Moyamoya.com
Internet support for those diagnosed with Moyamoya Disease

I hope that some of the families from around the country will be able to use this guest book to share their experiences with Moyamoya.

Now you can even post questions and interact with others on the Message Board!

Let other families know you're out there!

Click Here to view more Guest Book posts in the archives!

Click Here to add your entry to the Guest Book!


My daughter was diagnosed with Moyamoya disease on the right side on March 15,2016. she had her surgery in july. does anyone know what are the chances of her getting it on the left side or where i can find out the information?
Amber Cheshire <Amber.Cheshire@dads.state.tx.us>
Lufkin, Tx USA
Monday, September 12, 2016 at 15:11:02 (EDT)

I just found out that my 5 month old granddaughter had a stroke and seizures resulting in some stroke damage. She definitely has Moyamoya but they are still struggling to figure what is going on as things aren't adding up the way the Drs think it should. Reading what little is online scares me with the fact she is so young with these problems already. Any support or answers would be welcome. So sorry to all those who lost loved ones.
Nancy <Ladyriderinfla@gmail.com>
Florida USA
Wednesday, September 07, 2016 at 23:42:15 (EDT)

I am so grateful this site exists it has been so helpful for my nerves; my brother three weeks ago after his angiogram was told he has MMD. He is Korean and age 40. He has no signs of strokes but recently been having horrible headaches-- which lead him down the the hallways of Dr. Langer at Lenox Hill. My brother has been lucky he found out before anything major has taken place but left side is is quite advanced and the right side is starting to show signs. We are waiting to get the images and then will send them to Dr. Steinberg and try Dr. Connolly who I found through this site (thank you) for 2nd and 3rd opinion. Just a brief phone call with Dr. Langer and he think my b should do the STA-MCA and the EDAS on left side; he says he think its miraculous he hasn't has strokes but its inevitable. It already scheduled for Oct 26 but it seems so fast. Is one considered healthy when asymptomatic? Should surgery be rushed? Its so confusing. I am praying for everyone who is posting and has posted.
Jean <foreverjeannie@yahoo.com>
NYC, NY USA
Tuesday, September 06, 2016 at 09:54:33 (EDT)

My husband and both my sons have Moyamoya. Husband was diagnosed in 1982. Sons diagnosed age 17 and 21. Written by bolandeve, published 3 months ago. This story is also published in the Moyamoya disease community. My husband was diagnosed with Moyamoya back in 1982. At the time, he was thought to be the only person in the UK with this problem. We were told that it wasn't a heritable disorder, so we went on to have 2 children. My husband died in 2000 aged 43 years following an operation to resolve arterial problems in his leg. The operation was a shambles and he died 9 months later because his heart was badly damaged during the operation. My sons were diagnosed in their late teens with the same disorder. They have fully obstructed carotid arteries on both sides. The blood supply to the brain is via an artery at the back of the head. They are on various medications to thin blood/lower blood pressure etc. One has serious problems with short term memory. The other one has epilepsy brought on by a stroke and has problems with the arteries in his legs. What some people don't understand is that other vessels can be involved like the heart, legs, renal artery and more.
Evelyn Boland <boland1510@msn.com>
Perth, Not Applicable/Other United Kingdom
Wednesday, August 31, 2016 at 03:07:58 (EDT)

Hi, I'm Maria, my 49 yrs brother survive from hemorrhage stroke cause from basal ganglia bleed from moya moya disease.It been half a year now, he still can't understand what people are talking, confusing and can't talk a word.the doctor said he has global aphasia.His right side is paralyzed. We really have a hard time dealing with him. Neurologist suggest him to have DSA done next month to consider EC-IC bypass.
Maria ooi <seooi3836@gmail.com>
ipoh, Perak Malaysia
Wednesday, August 17, 2016 at 06:09:10 (EDT)

Hi my sister was diagnosed in 2014. She was 28yrs old. The first sign was she was at work and could not function the work she was doing. Around 2 weeks later she started losing the power in her left arm like she could not straightner her hair or she would drop things. Then she went to the ATM and she could not remember her pin number so we new there had to be something wrong. I took her to the hospital that day (3hr journey) and on the way her speech started to make no sense. When we got there they told me to bring her to a doctor surgery because the A&;E was very busy. I did and they sent us back to the hospital as they had no answers. We went back to the hospital and they kept her in for scans etc. She was admitted around 9pm and by the next morning her speech was totally gone. They informed us she had had a stroke. Theg said this was unusal for a girl her age (28) so they then sent her to Beaunount Hospital Dublin a couple days later where they diagnosed her with Moya-Moya. I nor anyone I knew had never heard of this and got little information for hospital as some of the staff there themselfs had never heard of it either. Doctors said she had 12 blood clots in the brain and she had to undergo a bypass in surgery. After this her speech came back a little and she was sent to a rehabilation centre in Dun Laoirge where she had to learn to dress, wash, cook , clean, talk ect from scratch. She was home 4 months later and has made a great recovery. Her memory is still not 100% but this was the hardest thing we have been through. I find my sister is so disterssed wondering why this has happened to her and how etc whitch is understandable but there is so little information on it I dont know what to tell her. Her own GP who she sees regurlary this is his first case so he had to research it himself. She is doing okay now and living on her own again but thisng still are not the way they used to be. Also i wonder if we had went to the hospital earlier could this have been prevented? I hope someone finds this helpful.
Kate <katetfe@gmail.com>
Cork, IRELAND
Saturday, July 23, 2016 at 19:04:24 (EDT)

Hello May God comfort all of you. My mom past away a year ago when she was 67 years old. She had been suffering a couple of strokes. Doctor said the disease was too advanced. She was sent to an elderly home with nursing care for few months. She was in bed all the time and I would talk to her however there was no sign that she understood me. She just stared at the ceiling. We had nothing else to do but pray. Weeks later, she was moved to hospice, her breathing and heartbeat were slowing down..until she passed away. Nurse said she passed away peacefully. I wonder if she knew I was there with her and heard me as I talked to her. Did she know I was there? I've searched online for answers and I can't find any. Even if she didn't move, as I talked to her did she hear me? I miss her so much. I can't believe she is gone. I know this is a rare disease but someone has to come up with a cure.
Lazara
USA
Wednesday, July 06, 2016 at 16:44:55 (EDT)

My name is Amber Cheshire and my daughter Kennedy was diagnosed with Moyamoya Disease on March 15, 2016. My husband and I are at a loss of what to do. Kennedy also has sage 1 NF and siezures.
amber cheshire <amber.cheshire@dads.state.tx.us>
lufkin, tx USA
Tuesday, May 10, 2016 at 15:27:22 (EDT)

Hi my name is Lisa my son at one year old had an extreme breathing attack September of 2015 he was then airlifted to the local children's hospital. He had a large soft spot still and cafe latte marks which are indicated of neurofibromatosis 1 they did a scan which is not right and then an MRI showed something wrong and then they discovered moyamoya. He then had surgery to correct it on October 21st 2015. The doctor took out of his scalp on his left side and he was it to his brain on his right side where the problem is. We just had a follow-up MRI on May third to see if it worked I have not heard the results yet.
Lisa canavab
Chandler, Az USA
Saturday, May 07, 2016 at 13:04:59 (EDT)

Hi my name is Amber Cheshire and my daughter Kennedy was just diagnosed with MoyaMoya on March 15, 2016. My husband and I are at a loss, kennedy even though she has moyamoya the doctors at Texas childrens refuses to do surgery on her until she has a stroke or tingling in the hands or feet which has totally, as a mother, has been driving me crazy. Today is May 6 which is set aside as Moyamoya Awareness Day so my husband and I had shirts made for this occasion. I am completely stumped at what to do. We are now thinking about contacting Boston Childrens hospital to see what they say. Waiting for her to have a stroke is not something I feel I can set by and let happen. Kennedy also has NF1 and Seizures.
Amber Cheshire <amber.cheshire@dads.state.tx.us>
Lufkin, Tx USA
Friday, May 06, 2016 at 12:30:07 (EDT)

My two year old son was just diagnosed with moyamoya. He suffered a stroke and after several days in the hospital we were told of his condition. As a father I am terrified for my son. He is set two have two surgeries but we do not know a timeframe yet as he must recover from his stroke. This site has been huge for us as parents thank you
Justin Dorsch <ichigo4206@live.com>
Colorado Springs , Co USA
Tuesday, April 05, 2016 at 21:20:37 (EDT)

I'm from the UK and I was diagnosed with mmd when I was 7. After countless TIA's in 2007 I had the surgery and had a blood clot in my brain removed. I've been taking aspirin since 2005 and now at 18 the only trouble I experience is weakness in my arms and chronic migraines which miles better than I used to be! I'm currently trying different medications to help with the headaches. It's nice to have found a support page so I don't feel alone. It's incredibly rare in the UK and approximately only 1 in every million are affected. Does anyone else struggle with remembering things? I have trouble sleeping and tips would be brilliant. My doctor won't prescribe sleeping tablets. This website is brilliant and has really helped me. Thank you!!
Alex Etchells <alex_etchells12@hotmail.co.uk>
Royton, Lancashire UK
Thursday, March 03, 2016 at 15:26:23 (EST)

My then 6 year old son was diagnosed with MM in 2006 and had surgery at Boston Children's Hospital (Dr. Scott). Just about 10 years later, my son is doing fantastic! We feel so indebted to Dr. Scott and CHB! Should anyone have any questions about MM, feel free to contact me any time!
Lenny Demers <Demersl@medimmune.com>
Douglas, MA USA
Wednesday, March 02, 2016 at 15:08:20 (EST)

Hi there my daughter has just been diagnosed with mmd age 6 we are awaiting surgery and I just wondered if anyone would be willing to share there stories of there children with this please email me many thanks
Vicky <Hathaway_victoria@yahoo.com>
Leeds, UK
Monday, February 08, 2016 at 16:48:48 (EST)

I was diagnosed with MM in February 2014 after experiencing severe dizziness, fatigue, headaches, nausea and near fainting spells for over 5 years. The doctors at Toronto Western diagnosed me as having MM on left side only. But I sent my scans to Dr. Steinberg at Stanford and he diagnosed me as having MM on both hemispheres. I had surgery done at Toronto Western by Dr Tymianski but still experience extreme fatigue, dizziness, lightheadedness and nausea. It's so disheartening to experience so many symptoms after surgery, especially after Dr. Tymianski declared that I shouldn't need any more surgery and should be fine from now on. Does anybody else experience these symptoms post surgery? Any advice?
Susan <messykitchen2015@gmail.com>
Toronto, ON Canada
Saturday, February 06, 2016 at 19:47:16 (EST)

https://www.eventbrite.com/e/stacey-stroke-awareness-can-empower-you-tickets-20986173209?discount=EXAMPLE On February 28, 2016 my daughter is trying to share information about MoyaMoya and Stroke. Join the walk and the fight. My best friend was impacted a few years ago and is in the midst of the fight for recovery. My daughter started the ST.A.C.E.Y Non-Profit Organization on behalf and is teaching young children about the signs of stroke. Good luck to all of the families here. We have been touched by your stories. The fight to inform the public is real.
Teresa Murphy <temurphy70@yahoo.com>
Miami, FL USA
Saturday, January 30, 2016 at 08:41:40 (EST)

42 yr old female. Had several TIAs back in Feb/March of 2015. Scan showed right cerebral artery 30% occlusion. Put on blood thinners. Second opinion and rerun of tests in Nov 2015 shows same artery 100% occlusion. Schedule for spinal tap to test brain fluid. Mention of moyamoya. Appt with neurosurgeon set for Jan. 4, 2016. Anyone been down this road? Wondering what my chances are that this is not moyamoya or that I won't have to have surgery.
Jennifer Trainor <Jbtrainor@yahoo.com>
Dayville, CT USA
Monday, December 21, 2015 at 15:51:03 (EST)

unfortunately, my wife died 4 days after moyamoya surgery at Stanford last week. All my family is utter shock and grief.
Young <ylee92@hotmail.com>
Los Angeles, CA USA
Wednesday, November 18, 2015 at 20:01:03 (EST)

My name is Sami and I am the husband of a 33 year old female her name is Rima. Rima was diagnosed with MoyaMoya in 2009 and had an IC/BC By pass surgery in 2010 at the Toronto Western Hospital in Canada. We got married in March 2012 and in Sep 2012 first day of school, my wife is an elementary school teacher, as she walked into her classroom she had a stroke and was rushed to the hospital. I should mention that Rima was pregnant at the time, 5 months pregnant. after multiple surgeries and complete life support system for weeks, Rima delivered our miracle baby Tala while she's in a coma in Dec. 2012. its Oct 28, 2015 and until this day my wife remains in bed in a coma with severe brain damage and very poor prognosis. shes's in a vegetative state. I would like to share somethings that Rima did while she was pregnant. she was advised by the doctor after her initial bypass surgery that she needs to stay on blood thinners "Aspirin" and the doctor advised us as well that it shouldn't be an issue to get pregnant. Rima stopped taking blood thinners when she got pregnant, saying that she doesn't feel that its safe for the baby. After Rima was admitted to the hospital when she had the hemorrhage, i asked the doctor if stopping the blood thinners was related or a cause of what happened and he replied it actually saved her life, otherwise her blood would've been so thin and she wouldn't have survived, and bled much more severely! I was given the options on giving up on my wife and my unborn child in the first couple of weeks of their admission to the hospital giving the fact that a lot of damage has happened to my wife's brain because of the initial stroke and the unborn baby at 4 and half months isn't viable. I refused and asked the doctors to look after both of them. with all the heavy doses of pain killers and seizure medication tha was administered to my wife during her hospitalization, our daughter Tala was born pre-maturely at 1860 grams. Tiny but healthy beautiful bundle of joy. shes turning 3 in December and she brings joy and happiness to my life. I hope my wife isn't in pain, i see her every week but im not too sure what she feels as she lies in bed in silence. I always let her listen to Tala's videos so she can hear out little angels voice. I am hoping one day she can recover and get a chance to hold our smart little princess. Im so very sorry for all the families who have lost their loved ones from Moyamoya or still fighting. my prayers goes out to you, Have faith people out there, yeah its sad and awful, but God will never abandon you and you will always find a way and a little light that will guide you day by day. peace & love I love you Tala & Rima and I miss you Both !
Sami <HAJJSAMI@GMAIL.COM>
Mississauga, ON Canada
Wednesday, October 28, 2015 at 18:56:14 (EDT)

My wife Trudy who was diagnosed with MMD in 2002 and has had bilateral EDAS had another stroke in Aug13. As a result of this stroke she is able to use the computer so I'm typing for her. She was left quite devastated and required a care giver. Her speak was affected and her judgement impaired. Just a few of her symptons. The good news is that we travelled to Florida to see Dr Ed Tobinick. He is an amazing man who has discovered a treatment for stroke victims. It's called Perispinal Etanercept. Google him. As a result of this treatment Trudy is now independant again.The results were immediate. Her judgement has returned. She can walk to and from town. She can speak clearer than before. She can shower herself she can do most things again. Just to be clear the treatment does not cure any brain damage caused by the stroke. It clears any inflammatory in the brain. Mr Tobinick has endured many court cases about his treatment as the old boys in the USA don't believe his treatment works. He's won every court case. We have seen it first hand and we recommend the treatment. Our Neurosurgeon Andrew Law says do what ever it takes. Try everything that you hear about. You are to long dead. Give Ed and his team a call. When we were there in Aug 2014 there were people from all over the world who came for the treatment. You have nothing to lose. One year down the track and Trudy is still doing well. We raised money to see him and we are forever grateful to our small community of Feilding, New Zealand. Good luck yeah right.You have to just do it.
Trudy Lawton <granttrudy@clear.net.nz>
Feilding, New Zealand
Friday, August 28, 2015 at 04:27:37 (EDT)

My 10 year old niece was diagnosed with Moyamoya about 3 months ago. She and her family live in Lima, Peru. A well-trained neurologist in Lima suspected the disease and requested an angiogram that eventually led to the final diagnosis. We were in a race against the relentless progression of this disease, she had multiple TIA but haven t had a stroke yet, we contacted all the world's experts in this disease , sent her records and brain images and they all agreed that immediate surgery was needed. We researched all the different types of surgeries and approaches. She needed surgery in both sides or her brain. Her family is not rich, they had a local insurance, her parents attended hopeless meetings at the local hospitals with the hope of getting some insurance coverage for the surgical procedure. The final answer was NO. We did not stop there. We could not stop there. Boston children s hospital gave us the most reasonable quote, they were willing to do both surgeries with one anesthesia that reduced the cost of the surgery by half. They worked with us for the past 2 months. They coordinated the visits and answered the medical questions. They gave us letters of medical necessity for the loans, explaining the disease, explaining why the specialized treatment. They gave us hope. We celebrated together when we got the loan to pay for her surgery. They greet us when we arrived to the hospital for her procedure and yesterday when my niece finally had her surgery with Dr. Smith, he explained to us what the future will hold for her. She will growth and thrive and be person she was destined to be without living under the shadow of an imminent stroke. Now this message is for all the families who are struggling with this disease. If a family living in a developing country with limited resources could do it. You could do it as well.
Cyndya
USA
Wednesday, August 26, 2015 at 22:25:59 (EDT)

Just found out i have Moyamoya. I am a 45 wm with two teenage daughters. The doctors at the University of Minnesota are treating me. Told me i will need ECIC bypass soon
Greg Beckwith <beckwithfamilymn@yahoo.com>
Cottage Grove , MN USA
Thursday, August 20, 2015 at 16:22:51 (EDT)

My mom was diagnosed with moya moya disease a month ago. She is 69 years old. The entire family is suffering as we see her in a rehab center after a series of strokes left her without being able to function at all. She only opens her eyes and blinks. Doctors say if she improves its very minimal and she could suffer another stroke which could be the last one to cause her death. We are distraught without being able to help her much. It was too late for surgery of any kind, there seems to be no cure..she suffered a series of minitrokes last year we thought it was due to her heart no doctor mentioned anything until now about moya moya..we feel as a family we should have done more for her..I am her daughter. I miss her everday and dream she is having a conversation with me evernight. All i can do now is stand by her bedside, hold her hand and tell her about my day.
lazara <santlzr@aol.com>
Hollywood , Fl USA
Wednesday, August 05, 2015 at 12:58:54 (EDT)

Hi, my name is Tracy. I was diagnosed Tuesday, June 30, 2015 with Moyamoya disease by Dr Steinberg at Stanford University. He will be doing a STA-MCA bypass as soon as we get the okay from my insurance company. My neurologist was unable to make the official diagnosis, but I am thankful it was mentioned during my last visit. I have had many family members die of stroke and aneurysm. I think this may be a step in the right direction for all of us. My symptoms include two strokes, one aneurysm, high blood pressure, chronic headaches, numbing and tingling in my fingers and face, and restless leg syndrome.
Tracy <tracywmattingly@gmail.com>
Wakeman, OH USA
Friday, July 03, 2015 at 08:55:12 (EDT)

My wife is 52, had a stroke, and was admitted to UNM (University of New Mexico) Hospital here in Albuquerque. They did an MRI and saw something they didn't like, then did an angiogram and confirmed the diagnosis of Moyamoya. She is having STA-MCA bypass surgery done Friday, May 29.
Tim <tim@timsabin.com>
Albuquerque, NM USA
Thursday, May 28, 2015 at 01:53:49 (EDT)

After being diagnosed with moyamoya in 2006 and having STA-MCA bypass surgery at Stanford (Dr. Steinberg) in 2007, I just had a routine cerebral angiogram and was told everything still looks very good. I am wondering though about other diseases associated with moyamoya. I had surgery as an infant due to intestinal malrotation, and some skeletal issues. Does anyone else have multiple diagnosis related to moyamoya?
Kimberly <kimberly_fells@yahoo.com>
San Diego, CA USA
Thursday, May 07, 2015 at 19:02:41 (EDT)

in my last post in march I had just been diagnois was refered to John Hopkins and have not heard back from the hospital makes me nervous as I was told right side is 100 percent blocked and left 78 percent how long have others have to wait for their surgery ?
rachael cruz arroyo <reynacruzmtz@gmail.com>
USA
Wednesday, April 15, 2015 at 20:12:31 (EDT)

I had my surgery done November 4, 2014 on my left side at Stanford. I am from San Diego, CA
Talisa Shelby <luvnjesus@me.com>
San Diego, California USA
Friday, April 10, 2015 at 23:24:58 (EDT)

My husband was diagnosed with bilateral MoyaMoya in 2011. He has had 2 surgeries and is recovering more and more everyday. Some days there are set backs and they can be hard to deal with. we have been focusing on proper nutrition and supplements to help him regain some of the brain functions he has lost. Some of this has been very beneficial, but there are still deficits that can be frustrating for him.
Rona Alexander <Healthier4you2@gmail.com>
Gaylord, MI USA
Tuesday, March 24, 2015 at 01:10:13 (EDT)

My mum is 63 and just diagnosed with moyamoya! She doesn't see Dr Brown in London until June but has no answers to her questions. Has anybody been told they cannot drive?she hasn't suffered any strokes and no other symptoms other than bad headaches as yet. But diagnosed through angiogram and other brain images taken
Kelly <Kjbangel0@yahoo.co.uk>
London, Uk
Thursday, March 19, 2015 at 14:35:29 (EDT)

I have been recently diagnosed with Moya MoYa after losing my eyesight back in Dec 2014 was given steriods which. Helped somewhat to regain some of it back I have diabetes so I was thinking that was the problem asI had lost one eyesight two eyesago and was not treated nor given a proper diagnoses this time I went to diffent doctors that promptly started testing me lots of Mri and spinal taps and eventually a cerebral angiogram was diagnose with moya moya this is all new to me Im on a waiting call from the Hospital St Johns Hopkins. For a possiable surgery Im nervous and dont know what tp expect
Rachael Cruz Arroyo <reynacruzmtz@gmail.com>
cutlerville, mich USA
Monday, March 16, 2015 at 15:40:59 (EDT)

My wife passed away Sept 2, 2014 of Moyamoya that was not diagnosed until too late...she suffered a stroke and was told it wasnt a stroke but a flareup of Ms..given steroids and sent on our way. After an MRI was told the MS had not progressed as she was on a daily dose of copaxone and the neuro seen some strange activity in her frontal lobes...wasnt concerned with it but would keep an eye on it...obviously had no clue about Moyamoya. In essence she fell thru the cracks!
Stanley Crawford <stancrawford575@yahoo.com>
Ashland, pa USA
Saturday, March 07, 2015 at 15:22:17 (EST)

My husband was diagnosed with Moya Moya in Dec 1995 at the age of 39. He spent from Dec 5 till January 12th in hospital and rehab. Had brain surgery in July 96 and it didnt work. Shortly after surgery is when the seizures started. He has been seizure free for probably 20 yrs thanks to Gabitril but this med is extremely expensive. For anyone experiencing problems please see your doctor and never give up. He still has alot of health problems but at least we know we have made it this far and just found you on Facebook. Never dreamed this would happen to him but it did. He has been disabled since Dec 95 and its been hard but he didnt give up.
Cathy Kelley <cathykelley1958@gmail.com>
Reeltown, AL USA
Thursday, February 26, 2015 at 14:24:49 (EST)

My name is Pat. I live in Toronto Ontario Canada. I am an older woman who was recently diagnosed wth Moyamoya. Does anyone know of any older people who have MM? Thanks.
Pat <patanddaveharris@sympatico.ca>
Toronto, On Canada
Saturday, January 24, 2015 at 09:31:22 (EST)

My name is Pat. I am the 71 year old woman in Toronto who wrote in the guest book recently. I am very interested in hearing about any older patients who have coped with or are who coping with MM. My email address is. patanddaveharris@sympatico.ca
Pat <patanddaveharris@sympatico.ca>
Toronto, On Canada
Sunday, January 18, 2015 at 12:42:18 (EST)

My name is Leslie. I was diagnosed with moyamoya disease in September 2013. I was admitted to the intensive care unit and had surgery a few days later. I did alright after the full surgery but had a hard time with thinking confusion and some other kind of processes. Upon follow-up MRI we realize that although The surgery saved my life it did not restore the blood flow like we had hoped. In September 2014 I had an additional surgery, a burr whole surgery. I now have nine dime size holes in the right side of my skull. The good news is that I'm feeling much better and I have enough hair to cover up the dents in my head so you never know I had the surgery. It is very hard to have this diagnosis but there is hope. Hang in there everyone.
Leslie <Lzschokke@gmail.com>
Phoenix, AZ USA
Tuesday, January 13, 2015 at 10:17:06 (EST)

Hi, I am a 71 yr old white female...just diagnosed with moyamoya No one had even heard of it...I had a hemmohagic small stroke last Oct. To the amazement of everyone as I am / was healthy taking no meds. Boom. Right now, I have zero symptoms. Can anyone relate to my age ? I live in Toronto. Any info would be wonderful. I have been scouring the Internet.
Pat
USA
Monday, January 12, 2015 at 15:04:50 (EST)

Hello, MoyaMoya came into my life since 2000. I'm very disappointed by the lack of information about this illness, the symptoms, how much it is hard in the everyday life, in the professional life to live with it. I'd be happy to share with you what you live concerning Moyamoya and what you've made to live better with this illness. With best regards, Youka
Youka <youka78@gmail.com>
Brussels, Brussels BELGIUM
Monday, January 12, 2015 at 11:26:49 (EST)

My name is Amanda. I am 30 years old and was diagnosed with MM in June 2013, 2 months before my wedding. It was found during an MRI. The neurologist and neurosurgeon had me do an angiogram to discover the severity. They discovered that all 6 arteries were narrowed. They were surprised that I had not had any strokes, seizures, or bleeding. The only explanation was that God performed a miracle. I have adequate blood vessels that formed in order to compensate for the lack of blood supply. Praise the Lord! I am now married and 7 months pregnant with our first baby girl. For anyone who lives in Alberta, the neuroscience department at the foothills hospital is great. Knowledgeable and encouraging.
Amanda MacDonald <amanda.callbeck@gmail.com>
Calgary, AB Canada
Thursday, November 27, 2014 at 16:10:53 (EST)

hello My daughter De'Lane had a massive stroke on April 1of 2013 they took us to denver childrens hospital where she was diagnosed with moyamoya she is seven now and has had the revasculation surgeries done on her brain. Yesterday we found out she has what they call "a-typical moyamoya" which how I understood is more rare than the disease itself. Her right artery is still shrinking. I'm still trying to understand all this A lot to comprehend. Now they want to do fourth surgery on her. I know there is no cure but how do all of u deal everyday? With everyday living? With small children do any of u have behavior issues? Or anything you guys have to add would be great.
Amy <amywoods81@yahoo.com>
haxtun, co USA
Wednesday, October 29, 2014 at 11:55:32 (EDT)

My daughter was recently diagnosed with MMD. She just turned 21 prior to being diagnosed. We had the Mra's done and some other tests. When we went back to the vascular surgeon, his exact words to me were, "we are sorry there is nothing we can do for her, put her on blood thinners and live for today. This is a bad thing she is dealing with!" How does a mother deal with that news? Her disease has progressed too much to try to do any surgery. He stated, she doesn't have the anatomy to do surgery. the disease has progressed where there are not enough good blood vessels in the brain to try to fix the bad ones. her left interior carotid artery is completely blocked and she is suffering from major headaches, limb numbness, tremors. What should I expect next? How long is the prognosis supposed to be? can anyone help me.
Karen Wright <karenie516@yahoo.com>
Lake Worth, TX USA
Monday, October 27, 2014 at 22:00:40 (EDT)

For any Canadians...there is a wonderful team and an excellent neurosurgeon at Toronto Western : Dr. Michael Temianski .
Lynn Walter
USA
Sunday, October 26, 2014 at 09:39:47 (EDT)

husband has moyamoya
connie
USA
Sunday, October 12, 2014 at 19:30:18 (EDT)

My 25 year old daughter Elizabeth was jut diagnosied with MMD. had a stroke. not sure what to do next. So confused do we look for specialist in this area or just see regular neurologist.
susan parker <sukiemammacat@aol.com>
south hadley, ma USA
Saturday, October 11, 2014 at 00:05:31 (EDT)

HI, My daughter is 3 1/2 years old with Down Syndrome and we received the moyamoya diagnosis 6 hours ago. for the past two years, she has been misdiagnosed with anemia. ANEMIA! My daughter, Taelyn, woke up 4 days ago with no control over her right arm and leg, not many neck muscles, she couldn't sit, stand, or eat by herself. We brought her to the ER and they did a catscan which showed for that last two years she has been having many strokes, an MRI confirmed sometime in the last 5 days that she had a massive stroke with caused the paralasys. They have decided on the surgery to re-route her blood vessels and I am so nervious after reading so many posts of children passing away. this little girl is my world! I am a 24 year old single mom to this beautiful baby! any GOOD results would be appreciated! Her doctors here in Oklahoma are saying that they want her to go to physical therapy and go back ot normal before doing surgery! I am so nervious
NIki <rosario.niki@yahoo.com>
Choctaw, ok USA
Friday, October 10, 2014 at 21:15:11 (EDT)

Hey Hi. My name is Ishita. I m blessed with the moyamoya disease. I had gone through 2 anastomoses when I was 13. After my 2nd operation, I got a stroke. I had lost my speech, a little memory loss and was paralysed, my right hand. Thanks to Dr.Scott and Dr.B.K Mishra. I took 1-1.5yrs to recover. However, I regained my speech well and 90-95% I regained my normal functioning of my right hand. Meanwhile, I had switched to my left hand and now I m totally a left handed girl. I had to go through hardships but now, I m self sufficient. I completed my education and now, I m known as a Special Educator and as a Counsellor. I feel blessed. All I want to say is, people who have moyamoya,feel dishearten and worry about their future, no one will get into your shoes and experience your pain, it's you and you need to push yourself and prove others that this rare disease is not the end of all.
Ishita Saha <ishitagkm@gmail.com>
Mumbai, Maharashtra India
Monday, October 06, 2014 at 05:03:38 (EDT)

Today we learned my seven year old grandson most likely has MoyaMoya. He was born with rare chromosome abnormalities and has worked so hard and overcome so much. Wednesday he had a stroke. Tomorrow he will have a angio to decide what can be done. I see the success stories here and the sad stories. I ask why our Precious Johnathon? I am sure each of you have asked the same question. I thank you for taking the time to do this site. Betty
Betty Seaba <seas1@netins.net>
Wellman, IA USA
Sunday, September 14, 2014 at 21:25:29 (EDT)

Hello, my name is Jason. My 18 year old daughter was admitted to UIC after having a stroke. After an agio and MRI she has been diagnosed with MoyaMoya. while still in the hospital she had two more strokes, heart failure, and problems with low blood pressure. weeks later transferred to RIC in Chicago for rehab from the stroke. Next week we return to the hospital for more test. If blood flow is adiquite her skull may be replaced from the crainioectomy. I'm terrified,Is UIC in Chicago capable to take care of Brooke? Where do I turn who's the best? Theres so much info on this site and after a couple of hours of reading I cant see or think straight. I only want the best for my baby girl. And I need help. Thank you
Jason malone <jasonownsatracker@yahoo.com>
Wheatfield, indiana USA
Tuesday, September 09, 2014 at 00:37:27 (EDT)

My daughter was diagnosed with moyamoya in august 2013 prior to diagnosis she was having "auras" it had been very difficult for her to accept. She was 20 at time of diagnosis. She had a grand mal seizure in our home shower. She is severly depressed, severe anxiety. She had "meltdowns" I believe it's caused by Keppra meds for seizures (it's a side effect) or it's the lack of adequate blood flow. It has affected only the left side of brain at this time, the middle cerebral blood vessel we were told had collapsed and detached itself? (For sure collapsed) I've contacted dr in Boston about help for her. She is almost 22 now and it hasn't gotten any better. She had no memory, thinking process is not good, her speech is starting to show weaknesses, her pupils are mostly all the time very large. We were told it's a slow progressive disorder. Prior to the grand mal she was healthy and happy. Lack of nutrition and oxygen and drastic weight lose (diet pull called South African hodia) could be the reason the disease progressed so quickly to affect her at age 20. It's been very difficult for her to accept what has happened (after all she started living) her words.
Diana Bates <Dbcharger2007@yahoo.com>
Wyandotte, Mi USA
Sunday, August 31, 2014 at 23:20:26 (EDT)

8-01-13 I had a grand mal seizure at my moms house, after being admitted into hospital is when I found out I had moyamoya. It had been drive staying to me and my family to say the least. I was 20 when I found out. I've been on two different seizure meds, I've become severly depressed, severe anxiety.
Samantha Neubacher <Sneubacher@gmail.com>
Wyandotte, Mi USA
Sunday, August 31, 2014 at 23:04:59 (EDT)

Hi, my parnter has just been diagnosed with MM, over the past 2 months he has has been having multiple of what his Neurologist was calling seizures until I took I took him to a different Hospital 2 weeks ago. They transfered him to a stroke center, ran a million tests and have decided that his internal arteries on both sides are over 95% blocked and that he has Moyamoya. He is also being referred for surgery
Debbie <deborahmorson@gmail.com>
Toronto, ON Canada
Saturday, August 30, 2014 at 16:00:20 (EDT)

My name is Kristin, after having my son in October I was diagnosed with this strange disease. I was scheduled for an MRI and found I had a blood discrepancy then on to an MRA showing I had poor circulation, then to a neurologist who finally told me it looked like Moya Moya. On for more testing I had a catheter in my brain to insure me that I did have Moya Moya in the left side of my brain. My son is currently 7 month old and I am 20, we are both way to young to be losing me. Since I have been so recent introduced I guess I'm just hopping for a helping hand. I really never thought I'd get something so rare because I am generally in good health and never get sick. But I guess there is a first time for everything. If anyone would like to tell me anything to insure my safety that would be great, thank you all for being here as great supporters.
Kristin Woltz <kristinwoltz@hotmail.com>
New Lexington, OH USA
Monday, May 26, 2014 at 22:26:16 (EDT)

My son who was born with Down syndrome was 21 and woke up 2 days before Christmas 2013 and fell to the ground with right paralysis . He was taken to the hospital and an hour later while holding my hand he had a massive bleed to the brain, he had no warning signs previous to this. He had an operation but he never woke up. He died on Christmas Day . It was so sudden and such a shock. My husband and I and the kids are devasted. He was such a beautiful boy and touched a lot of people. Good luck to everyone here .
Marie <Marie@lechat.com.au>
Australia
Sunday, May 18, 2014 at 07:47:12 (EDT)

Hey there everyone, This is for all the Australians out there that find this page, there is a Moyamoya support group on Facebook called Moyamoya Australia, Look forward to seeing you there. :)
Della Johnson <dellarae1965@bigpond.com>
Palen Creek, QLD Australia
Wednesday, May 07, 2014 at 23:34:13 (EDT)

Thanks everyone for sharing your stories. I was dx with MM in May 2010 after having a stroke while I was 27 wks pregnant. Thank the Lord that my son and I fully recovered. I have since had 2 bypass surgeries, and am counting my blessings daily!
Audrey <audreyaldous@gmail.com>
Toronto, ON Canada
Tuesday, May 06, 2014 at 22:50:40 (EDT)

we have a son 16 years old with moya moya he is also a down syndrome boy. Dr Steinberg in Stanford California performed his surgery 5 years ago. He was fantastic and a fabulous doctor. Knows all there is to know and teaches other doctors in the country and the world about Moya Moya.
TERESA RAMOS <teresaramos123@yahoo.com>
BARTLETT, Illinois USA
Wednesday, April 23, 2014 at 21:37:29 (EDT)

G'day and firstly thank you so much for sharing your MOYAMOYA experiences. My name is Melissa and I am 48 years young. I live in Melbourne Australia and am yet to get a definitive diagnosis or treatment. Hearing you all makes me feel so much more confident about my future and it's direction. I am currently looking for a 2nd opinion from a Sydney Neurosurgeon (prof Marcus Stoodley) that has a clinical interest in MM. My neurologists/radiologists in Melbourne tried a balloon angioplasty last Aug 2013 but it failed and they told me that was the only known method of treatment. I've since found so much more on the internet thanks to DJ, this site and of course all of you. It would seem when one door closes another one opens. Kind regards Melissa
MelissaK <kclubtecoma@hotmail.com>
Melbourne, VIC Australia
Friday, April 04, 2014 at 21:38:29 (EDT)

My friend Elizabeth passed away this morning. She had been in a coma for 2 1/2 years after suffering a massive aneurysm. She was diagnosed with Moyamoya after having a stroke whilst pregnant at the age of 22. Despite her health being poor some times, she was a loving, devoted mother to her son. She was beautiful, funny, and was so good to my children. She will be dearly missed by all that knew her.
Christina Kaur <silverstina@yahoo.com>
Aurora, CO USA
Monday, March 24, 2014 at 13:48:33 (EDT)

Happy to announce the first Moyamoya patients information broschure in German language available at http://www.dmv-direkt.de/Moyamoya/
Dr Kraemer
Essen, Germany
Saturday, March 22, 2014 at 07:37:10 (EDT)

My daughter died 16/11/13 from Moyamoya in the UK, she was misdiagnosed with hemaplegic migraine in April 2014 and then in October was told she had moyamoya and had an operation EDAS and died 5 days later!She suffered TIA,s and strokes and lost use of her hand and leg, she then had an MRI scan which showed numerous strokes!! I feel that she should not have died and feel so awful that she has gone and not have died!She was 34 years of age , white European,married with a 3 year old daughter. Apparently rare to have moyamoya in white Europeans!!
Jane
England, UK USA
Monday, March 10, 2014 at 17:22:26 (EDT)

My brother had a mini stroke (TIA) on January 7th and he is now having a surgery on Monday, February 10th. HE says they are doing half his brain and the other half later. After finally figuring out what they diagnosed him with I found this site (we speak over the phone and he just kept saying MAMA Disease). He isn't the most sharing person, so I'm n ot sure which surgery he is having. Anyway, thanks for the information! It was very difficult find anythign on google search.
Wayne Henson <roehenson@hotmail.com>
Kansas city, MO USA
Wednesday, January 29, 2014 at 16:27:57 (EST)

I was found MMD on Oct.2013. I'm not so scare because Dr. said I'm 56 now. Usually MMD occur in young people or children. I'm a Chinese Female. I still have interesting in my illness.
ofelia lam
hksar, HK HKSAR
Wednesday, January 29, 2014 at 03:17:29 (EST)

I have Moya moya and just had a stint put in my brain to get more blood flow, the Doctors were fantastic. my Moya moya wasn't detected until I was 43 years old, so it was in its advanced stages and I was having seizures and strokes.
Robert Monahan <boldwing@comcast.net>
plymouth, Pa USA
Friday, January 24, 2014 at 08:49:41 (EST)

I recently found out that I have moya moya disease and am waiting on revascularization surgery on both sides of my head hopefully in late February early march.
Jason robertson <jasonrobe71@gmail.com>
melbourne, vic australia
Friday, January 17, 2014 at 06:41:39 (EST)

My husband was diagnoses with MM after suffering a hemorrhagic stroke in Dec. 2013. He is 37 and I am very confused as to the vascular bi-pass as a viable treatment option.
NICOLE <nlynnh@aol.com>
pittsburgh, PA USA
Sunday, January 12, 2014 at 20:13:50 (EST)

Hi there, am Elizabeth,I was dx with MM on january 2013,so i started looking for a neurosurgeon so finallu _I found a doc at stanford but my insurance didnt cover the cost at all, it was so expensive for me. Finally and thanks God i found Dr. Edgar Nathal Vera the best surgeon in Latin America, hes Mexican. Last week he traveled to my city and had the second surgery. Am fine by now,I dont know what is going to happen with my life, but in six months i will need an angio study. Am telling you this because if someone doesnt has insurance this doctor is fab and much less expensive.I had a great experience and we have excellent hospitals here in Mexico. if you need info please contact me lizy-71@hotmail.com
Elizabeth <lizy-71@hotmail.com>
Mexico,D.F., eleccione un estado -- Mexico
Friday, December 27, 2013 at 21:51:09 (EST)

I am a mother of a daughter who was diagnosed in 1990. Not as much was known about MMD at that time so she had different surgery than you have now. She is now 24 and having her first baby. She had so many strokes before she was 7 I wasn't sure she would survive. But she is doing very well. There is hope for all your little children. We treated her as a typical child and she is a typical woman now who can do anything she chooses. She has a few obstacles to overcome in her life but she meets them head on.
Catherine Leavitt <catherineleavitt@hotmail.com>
Naniamo, BC Canada
Saturday, December 14, 2013 at 12:44:07 (EST)

I'm thankful to have found this site. I had bypass surgery in 2011. The only reason I had a clue that I might need another surgery is because I happened to be browsing and saw DJ's post about a second bypass?!
Cecelia Jones <ceceliajon@gmail.com>
Glen Allen, VA USA
Monday, November 25, 2013 at 16:49:54 (EST)

My mother has been living with this since 2000. I am thankful to have found this site, I try to keep up to date. Thank you!
Tami
Chicago, IL USA
Monday, November 18, 2013 at 15:38:19 (EST)

Thanks for sharing I was diagnosed in 2011 and have 2 surgeries so far its nice to know your not alone. When the docs tell you there is nothing we can do until your almost broke. Its very scary. its nice to know there is others out there experience the same thing as you. god bless you and stay well. Angie
Angie Terzan <angieterzan9@gmail.com>
Tucson, AZ USA
Sunday, November 10, 2013 at 04:41:44 (EST)

I went in for a routine physical and insisted on getting an MRI since I had TIAs several times a day for a period of 3 years. I ignored the symptoms and let 3 years pass. The MRI showed I had an infarction and that I lost my peripheral vision. I went to Yonsei Hospital in Seoul, Korea and get the rounds of tests and was diagnosed a week later with MMD. To make things worse, my angio showed that my disease had progressed to the point where I had no visible arteries or any veins in my left brain. 2 days after my angio, my parents flew in from the States and I had my EC-IC bypass surgery. I'm recovering now and await my second surgery. I wanted to thank the contributors to this website as it provide me with a wealth of information in English!
Stephanie
Seoul , Korea
Thursday, September 12, 2013 at 01:25:53 (EDT)

I am the mother of Mina, 6 years old kid with Down syndrome who was diagnosed with Moya Moya of Feb 2013 living in Cairo- Egypt. He was hospitalized for 2 weeks after his first stroke then discharged. 5 Days after, he had a new stroke and again hospitalized for two weeks who left him with weakness in his left hand knowing that he is left handed. We were blessed to get in contact with DR. Nadia Khan in Kinderhospital Zurich and he had an STA-MCA bypass and EDMS/EGPS on May 3rd. We are back to Cairo and he is doing great thanks God. He is supposed to have another surgery by November- December this year and unfortunately we don't have money for the coming operation as what we had we paid in the first one made by a loan. If you know any way to get in contact with a charity organization who could help us for the coming operation please don't hesitate to send us details. Appreciate it!
ines doss <ines@arablc.com>
Cairo, Egypt
Monday, June 10, 2013 at 17:25:25 (EDT)

Does anyone in the MoyaMoya community know of neurosurgeons in the Toronto, Ontario area that do the STA-MCA bypass or any MD's that specialize in MMD in that city ? Thanks , Lynn
Lynn Walter <lgwalter@bellsouth.net>
PBG, FL. USA
Wednesday, May 22, 2013 at 13:54:04 (EDT)

Hi, my son is 5 years old (in august). MoyaMoya is a part of his life. He had many stokes and 3 surgeries EDAS, by-pass and a lot of medications. If you have questions or just wanna talk, we are on facebook couragecharlesalex and we have a website with pictures and comments. Welcome!!! We are not so many with this rare disease, we have to be together. Sonia (Charles-Alex's mom)
Sonia Trottier
Monday, May 20, 2013 at 16:01:03 (EDT)

My name is Piilani and my 6 year old son was diagnosed with moyamoya. I have been looking on the internet to find out more but have come to a dead end. We are about to schedule his first surgery and I am scared out of my mind. I have never heard about this before. I am glad that there is a site that I can come to for information. Mahalo nui loa (thank you very much)
Pii Colburn
waiane, Hi USA
Thursday, May 02, 2013 at 02:37:26 (EDT)

Plz inform me I was diagnose April 2013 I am a 46 year old black American
Adrienne Atkinson <Ellajohnaae@yahoo.com>
Bronx, Ny USA
Wednesday, May 01, 2013 at 23:54:19 (EDT)

I had my surgery in 2000 at age 36 and Im doing well but I do have vitamin D deficiency also. I'm interested in finding out more about testing to see if my son has the disease. I missed the conference last summer but found the keynote speakers information invaluable for my sons Dr. Thanks for all just being out there so I don't feel so alone!
Carla Peters <Carla@jasonandcarla.com>
Waco, Tx USA
Tuesday, April 09, 2013 at 13:19:40 (EDT)

Hi my name John, my father was diagnosed with moyamoya in 2000 at 48yrs old. I remember him having other problems years prior TIA related, that was never diagnosed. He to Was vitamin D deficient. He had surgery in late 2001 and began recovery. He didn't have another attack for almost 10 years, other symptoms displayed were arterial sclerosis and he discomfort in his feet.(currently forgetting the technical term for it).
John Matton
Lynbrook , Ny USA
Friday, March 29, 2013 at 01:30:45 (EDT)

HEY everyone, I've spoken to a few people via Facebook and it appears that some of the patients of which I am one is vitamin D deficient, it would be really helpful if we Knew more of you suffer from Viatmin D deficiency. Helen Smith from Australia is compiling a questionnaire and needs as many people as possible to complete it. FB page is World moyamoya day - May 6th. We are hoping that there may be a link with MMD and Vit D deficieny. Thank you
Della Johnson <dellarae1965@bigpond.com>
Palen Creek, QLD Australia
Sunday, March 24, 2013 at 06:21:00 (EDT)

Hello My name is Veronica and 3 wks ago my husband had a stroke and the only thing that was effected was his speech MRI was done and they told us it look like he had moya moya it showed the puff of smoke as they call it but he don't have all the moya moya symptoms he just has the pattern also they found that his was linked to hyperthyroidism and graves disease he got the radiation treat t o destroy is thyroid but it also created the moya moya pattern on his brain and caused him to have a stroke right now he don't require surgery but i think he might need it in the long run i am looking for a social group that could help me understand this disease a little more better by the way we are from Houston Tx and my hubby is 37 yrs old
Veronica White <veewhite12@yahoo.com>
Houston, tx USA
Saturday, March 23, 2013 at 11:24:26 (EDT)

Seeking information on coma patient recovery following brain swelling and continual temporal hemorrhages after Moyamoya bypass surgery (this surgery took place Friday March 8th). Friend was release after recovering from surgery and from post-surgery complications Thurs 3/14 (he suffered the first temporal lobe hemorrhage the day after surgery). He followed dr s orders and on Sat 3/16 sometime in the early morning hours he hemorrhaged again. He s been in a coma since and on life support. Friends coma has been GCS 8 since last Sunday-he responds to voice commands and pain and he even tolerated 3 hrs off the vent yesterday (breathing on his own). He has had numerous surgeries since Sat to relieve swelling of the brain and control bleeding-they also removed a small piece of brain that was dead 2 days ago. Today he was unresponsive and doctors say brain function is no longer detected, but they also said that same thing last Sat but he improved and then they said it looked good for at least an 80% recovery. After the non-response this morning, following a report of more bleeding, they now recommend pulling life support (vent, feeding tube, etc) because they say there is no further hope that he will recover-he's brain dead. Has anyone had the same complications following the Moyamoya bypass surgery? Or, does anyone have personal knowledge of a turn around when a patient was determined to be brain dead? I've been reading a lot about coma patients as well and think that 2 weeks following the original surgery and only 1 day following a setback is too soon to say the best option is to cut life support. Sadly, I think I'm just looking for the smallest shred of hope when there probably none... any and all information would be greatly appreciated
jamie <jamiechastan1@gmail.com>
Bovey, MN USA
Friday, March 22, 2013 at 01:29:00 (EDT)

Hey everyone, I was wondering if anyone has flown in a plane to go somewhere after surgery. We live so far away from relatives and its becoming a real drag to spend hours driving, just for a weekend. I'm asleep behind the wheel after two hours, so my poor husband who works long hours has to drive me. Is there anyone out there that knows. Your consideration in this matter is greatly Appreciated. Cheers Della
Della Johnson <dellarae1965@bigpond.com>
Palen Creek, QLD Australia
Sunday, March 17, 2013 at 09:04:41 (EDT)

48 hrs ago following my 12 yr old son's MRI and MRA for Neurofibromatois, we were given the alarming news he has Moyamoya disease. While we wait for the specialist to rally to give us an expert opionion I am so glad to have found your Internet Support Webpage and all its very useful information to inform myself and my husband. However my son has had no symptoms of TIA's or stroke, but does have an unexplained hearing loss on left side and often says he hears a buzzing/weird noise in that ear. So I feel "on guard" now and a sense of impending dome, which I can't shake!
Jane Smith <mjjpsmith@gmail.com>
Vienna, VA USA
Friday, March 15, 2013 at 12:42:21 (EDT)

i have moya moya. i had 2 surgeries. in december 18, 2011, my second surgery. my head is not healing! why? please help me! Sandi
Sandi <sammie_rae61@yahoo.com>
Crest Hill, IL USA
Thursday, March 14, 2013 at 18:05:45 (EDT)

My daughter has moyamoya and has had it five years of her life she is five years old and it seems like its getting worse every six months she has a attack she is now special need She has had two operations and it seems like it isn't working my baby means the world to me her name is angel and I am trying to find a way to help her Can someone give me some light on how to save my baby
dedrea pearson <dedreap36@gmail.com>
nashville, tn USA
Monday, February 18, 2013 at 03:29:01 (EST)

I was diagnosed Dec. 2012 with MM. I had noticed a shift in my vision and went to the Dr to discover why. It turns out I had a small stroke and after a couple MRI s I was diagnosed. My internal carotid arteries are completely occluded, so my disease was fairly progressed (39 yrs old at the time). My neurologist gave me some very good advice and I will always be grateful for him taking the time and effort to talk with me and share what information he had. I'm sharing this because I had no idea of what to do or how to even start searching for help and his advice really helped. He told me to find an expert, there aren't a lot of them but they are out there. He suggested getting in contact with either (or all) Cedar-Sinai, Mayo in Boston or Stanford because they all have clinics that specialize in MM. I did research on all of the above and found out that Dr. Steinberg at Stanford does free consultations. I sent him my medical records and he confirmed my diagnosis and suggested surgery since my scans showed I'd had a couple pinpoint strokes since the original. The second piece of advice my neurologist gave me was to be proactive and not just wait. This is a progressive, degenerative disease which means it will just keep going and should not be ignored (it will not get better on it's own). I had double craniotomies in Aug of 2012 and will be heading to my 6 month check up at Stanford soon. It was scary as hell but I had my family and friends and was able to talk to other people who were effected by the disease. I hope this helps. Maile
Maile
Kailua, HI USA
Saturday, February 16, 2013 at 00:58:33 (EST)

Hi there, I was dx. MMD last week,thanks God the hospital where I went to check myself, found a just specialized dr. arriving from Japan,he is mexican as I am and dx. me MMD. now am taking aspirin everyday,waiting for a new brain checkup. Am scared, am the only case here in my city, Merida, thats mean I really feel "unique",I wish to know if my life will change, sometimes I feel my right arm,finger and leg like numb,dificulties to speak, my words sounds funny with no sense,I dont know if I will need a surgery.Am scared, anyone can help?Thankyou!!! Lizzy 41 yrs.
Lizzy Saide <lizy-71@hotmail.com>
Merida, Yucatan Mexico
Saturday, February 09, 2013 at 16:57:59 (EST)

Hello , My name is Jen. I was just recently diagnosed with MMD on Sept. 1, 2012. This is also the day that I had my first and hopefully last stroke. I am a RN. I have never heard of this disease until I was diagnosed with it. It has changed my life. Now, since my stroke, I am unable to work as a nurse at my current job.Going fron a very independant woman to a woman who can't even drive to the store. Recently , I have been thinking about surgery. I am terrified, as a nurse I have seen so many things..... Makes me wonder... Will that happen to me? I have been havimg migranes since I was 16.Clusters they called them.... with periods of aphasia and numbness and tingleing on left side if mouth hand and arm....It was moyamoya causing this... wish i would have known. They say that even though my Right side id occluded , My left side may need intervention soon. That is why I may have the surgery. I can't go thru anouther stroke again. Does anyone else with MMD have anger issues? I do wonder if it's the stroke or MMD?
Jennifer <mcgorangerald@yahoo.com>
Pittsburgh, PA USA
Tuesday, January 22, 2013 at 17:01:01 (EST)

G'Day mates hows it going, Well its been a while since I made a comment on here. I moved to the country after the surgery as I was not playing well with others. No this is not part of moyamoya disease it is something else. My MMD is going as well as it can, I had a very very minor stroke a few months after surgery so minor in fact I didn't know I had had it until I got up off the lounge and my left leg and arm wouldn't work properly, they are both working fine now. I sometimes feel sorry for myself, which then only makes me angry at myself, so I get over it and try and do something positive, I sometimes take photos and I take little trips, around to the bush around my area, it can be quite beautiful my country. I prefer to go alone ut even I know that is silly, my balance is not what it used to be, I tried going back to rollerskating but my leg isn't strong enough to turn and I'm very unbalanced, but you thing I've noticed the most is now I have fear, I was never scared to try anything once, but now I won't do it in fear that I might get hurt or worse bang my head and ruin all the good work that has been done, I also have anger problems. So you all see why I need to go bush and take photos. If you would like to see my facebook page please email me and not discuss it here as this is for people like me who just want to give an update. Thanks. I see my specialist yearly now which is good. 3 Weeks ago it was my birthday and I turned 47, I never thought in a million years that I would be this old, but then you know I felt privalaged because getting old is a privalage, not everybody gets to be there. Cheers
Della Johnson <dellarae1965@bigpond.com>
Brisbane, QLD Australia
Tuesday, January 01, 2013 at 21:53:03 (EST)

Hello, I am 24 and was recently diagnosed with Moyamoya. I have had headaches for awhile but I just related it to stress (working, full time nursing school, and planning a wedding!)I had a severe headache the other night, nausea, and one episode of vomiting that pushed me over the edge so I went to the ER. Luckily no one brushed me off and I had a CT with and without contrast. They said they believe I have had it since birth since I have adequate collateral circulation, so my brain is adequately perfused. I am assuming I will still need surgery however. I have an appointment with a neurovascular surgeon on Jan.2 but does anyone have a similar story? It seems that everyone I read about either found out by having, TIA's, strokes, or seizures.
Hannah <hef0226@gmail.com>
IN USA
Thursday, December 20, 2012 at 13:54:04 (EST)

I can't thank you enough for the peace of mind I am now feeling that the money curse against me is gone. I am feeling more confident and happier every day.Dr maduraiI know now that there is someone like you, helping people like me, who are victims of evil people and their curses. Bless you and the work you do. I can't thank you enough and now I am finally able to sleep at night knowing that you have worked so hard on my behalf to rid me of this years long curse. Thank you. Thank you.Dr madurai of maduraitemple@yahoo.com
harri <maduraitemple@yahoo.com>
uk, 12 USA
Thursday, November 22, 2012 at 17:00:23 (EST)

bonjour je suis maman d un peti garcon de 7 ans on lui a diagnostique la moyamoya en aout 2012 c est une effroyable nouvelle pour nous on es face a l inconnu complet apres plusieur recherche via internet nous sommes rendu compte de ce que c etait aujourdhui alexi va bien on vit en permanence stresser pour pas qu il lui arrive quelque chose nous avons une date pour les operations trou de trepan sur toute la tete et operation avec l atere tamporal des deux cotes nous sommes inquiet car tres lourde operation et pour notre si petit garcon et pas de suivi par personne nous sommes dans un fluide total grace a notre amour et notre force nous tenons et gardons un grand espior merci
vermassen <info@muraneuf.be>
doische, belgique
Thursday, November 08, 2012 at 06:05:37 (EST)

i am giving this testimony cos l am happy My name is mrs. Deborah Collins from Houston,taxes.i never believed in love spells or magic until i met this spell caster once. when i went to Africa in june this year on a business summit. i ment a man called dr. Atakpo.He is powerful he could help you cast a spells to bring back my love s gone,misbehaving lover looking for some one to love you, bring back lost money and magic money spell or spell for a good job.i m now happy & a living testimony cos the man i had wanted to marry left me 3 weeks before our wedding and my life was upside down cos our relationship has been on for 2 years i really loved him, but his mother was against me and he had no good paying job. so when i met this spell caster, i told him what happened and explained the situation of things to him..at first i was undecided,skeptical and doubtful, but i just gave it a try. and in 6 days when i returned to taxes, my boyfriend (is now my husband ) he called me by himself and came to me apologizing that everything had been settled with his mom and family and he got a new job interview so we should get married..i didn t believe it cos the spell caster only asked for my name and my boyfriends name and all i wanted him to do well we are happily married now and we are expecting our little kid,and my husband also got a new job and our lives became much better. in case anyone needs the spell caster for some help, email address atakpospelltemple@yahoo.com Great Atakpo i thank you very much thank you in 1000000 times.. if not you i would have been losted and wasted thank you. please make sure you contact him for any financial difficulties okay.. What a powerful man such as Dr Atakpo.. he is so much powerful..\\ email him for any difficulties.. atakpospelltemple@yahoo.com
EDith Mrak <sandymike45@hotmail.com>
chicago, england USA
Wednesday, October 17, 2012 at 22:36:26 (EDT)

i was diagnosed with moyamoya disease back in March of this year. it was the most heart wrenching news i ever got. i have a twin sister who is going there the same thing. she was diagnosed in her teens. We both are 27 now and i just found out i had the disease this year. i had to bypasses to correct the issue. im doing good now but i still have a lot of questions to be solved. i was one of the lucky ones i was rushed to the hospital in the nick of time. i have no physical nor speech issues. so if anyone has more information on the disease please help me
Amanda Ryan <marinegrl_2006@yahoo.com>
independence , ky USA
Wednesday, October 17, 2012 at 10:38:05 (EDT)

I have had to have a bypass due to NO blood flow to the left side of my brain due to the lovely aforementioned MOYAMOYA. I am willing to talk and have a conversation about Moyamoya. I am open to learn more and give my experiences due to Moyamoya that I did not know I had for 30 some years.
Julie Kline <ravensjul@gmail.com>
Phoenix, AZ USA
Monday, September 03, 2012 at 02:54:25 (EDT)

Thanks Doctor mukulu My sincerest gratitude to your good self Dr mukulu for the entire assistance I have received. I am now on my way to recovery. My operation went well. I express my gratitude to you for the money spell I received beforehand. Without the money, I would not have been able to have my operation and I so seriously needed to have it. I have not been able to write with my thanks before now as my recuperation period was away in Canada far away from my home and my own familiar surroundings and my beloved computer. My family invited me to spend 3 generous months with them which I took up as soon as I could (I Thank you for the help there too my dear). Although I was able to use the computer where I was I did not feel comfortable until I was fully recovered and in my own home again with my ex lover come back to me ooh my life is back again I am very happy today and my business is going smoothly and I am happy with it what can I do for Dr mukulu I did send you many silent thoughts of thanks many times. Perhaps you got them I do not know. I most humbly thank you from the deepest recess of my heart and spirit for the tremendous help. God Bless you mukulutemple@yahoo.com I will till people about you Doctor you are good and so kind... Margret from Canada
Margret <Margreterte@yahoo.com>
canada, califonia USA
Friday, August 31, 2012 at 01:24:14 (EDT)

Bonjour je m'appel pascal et mon petit garçon de 7 ans est atteind de la maladie moya moya nous l'avons apris juste hier nous nous inquietions beaucoup ce site a permis d'apaiser nos crainte car les medecin ne nous dise pas grand chose a ce jour nous avons rendez vous avec un neurochirurgien le 5/9 je reviendrais vers ce site pour vous tenir informer pascal de belgique
pascal <info@ecopbc.be>
mariembourg, belgique
Wednesday, August 29, 2012 at 10:51:58 (EDT)

I am two year's from my last surgery for MoyaMoya. I go sept 11, for my two year Angiogram. I still have problem's bending over, i will get a head ake. Still do not have a lot of energy after the surgery's. I have a problem with remembering words. any one else?
Jennie Bader <jennie4342@yahoo.com>
fredonia, ky USA
Friday, August 17, 2012 at 14:50:28 (EDT)

Hi, my name is Dr. Christine Chang. I am a 44 year old Chinese female who was diagnosed with moyamoya syndrome on 4/2/2012. My only symptom of moyamoya syndrome was hearing a pulsatile bruit sound with every heartbeat in my right ear since around January 2011. I had tried to ignore it for almost 18 months before I finally told my primary care physician Dr. Nancy Venditti what I was hearing. Thank goodness she was really listening because she suggested that we get a carotid ultrasound. When I was getting my carotid ultrasound, I thought it was taking longer than usual. I knew it wasn't a good sign when the radiologist joined me and the ultrasound technician in the room. The radiologist proceeded to inform me that she could not see my right internal carotid artery and that it seemed to be occluded from the common carotid bifurcation. Shaken, I proceeded to dial Dr. Venditti's office so that I could get prior authorization for a CT angiogram of the head and neck, which was done within a couple hours. It showed that I had additional occlusions in my anterior communicating artery and a branch of my middle cerebral artery. And yet, I had never even had any symptoms other than the pulsatile bruit for the last 18 months. The CT angiogram also suggested a possible stroke but it was not clear if this was a real finding or not. In any case, I have never had any stroke-like or TIA symptoms such as weakness, speech difficulties, blurriness of vision, headaches or dizziness. By the time I got home after my CT angiogram, my mind began going into overdrive. Who should I see for this problem. It certainly was not normal for a 44-year old woman to have all these arterial blockages in her head without any clinical symptoms! I knew that I had to find a specialist to see quickly in the Boston area. Thank goodness there was no shortage of neurologists, vascular surgeons and neurosurgeons in my area. I decided to look into the Vascular Surgery and Neurosurgery departments at the Brigham and Women's Hospital and Massachusetts General Hospital. My first visit to a vascular surgeon at BWH was where the specialist suggested that my right internal carotid artery occlusion was most likely due to an asymptomatic carotid artery dissection. I was thought to be an extremely lucky patient not to have any stroke-like symptoms, but no procedure or operation was suggested since I was not having any symptoms. The vascular surgeon suggested that we might repeat the CT angiogram and consider getting a brain MRI/MRA in 6 months. I could have walked away from this visit and have done exactly what he suggested and the diagnosis of moyamoya syndrome would never have been made. However, it was still bothering me that a 44-year old woman like myself had these blocked artery findings in her head that were asymptomatic. I decided to seek the opinion of a neurosurgeon. I found a neurosurgeon at the Brigham and Women's Hospital whose profile stated that she specialized in carotid artery disease. Her name is Dr. Rose Du. When I saw the words "carotid artery disease" I thought to myself that this described exactly the condition that I have. Dr. Du's profile also lists moyamoya disease, but back in April 2012, these words did not mean that much to me. I certainly had no inkling at that time that moyamoya disease was applicable to my situation! I saw Dr. Du on 4/2/2012 and she took a careful look at my CT angiogram film and my carotid ultrasound. She then told me that she thought I might have moyamoya syndrome because she saw some dilated lenticulostriate arteries on my CT angiogram in addition to the blockages in my right internal carotid artery and other two brain arteries. I was stunned for a moment. She asked if I knew what moyamoya syndrome was. I told her that I think I vaguely remembered studying about it in medical school, but that I really did not know what it was. She proceeded to give me a textbook explanation, while all the while reassuring me that I was one of the lucky ones whose moyamoya syndrome was found before any TIA or stroke symptoms occurred. So, to cut to the chase, once I heard that my stroke risk could be reduced from 70% over two years down to 2% if I underwent the STA-MCA bypass on my right side, I could not sign up for the surgery soon enough. Since I was not having any symptoms, I was able to buy some time to schedule my surgery, rather than rush into it. I had to find a time to take a leave of absence from my own primary care medical practice and do my best to reassure my own patients that I would be okay and that I planned to return to practicing medicine after I healed from my operation. I underwent a right-sided STA-MCA bypass on 7/27/2012 under the excellent and capable hands of Dr. Rose Du at the Brigham and Women's Hospital. After the operation, I was sent to the Neuro ICU for one day. After one day in the ICU, I was doing well enough to be promoted to a step-down unit. I went instead to the Shapiro Pavilion at BWH because it provided me a private quiet place to get better and the nursing staff could not have been more excellent there. I went home on 7/31/2012 and have been doing well since with only minimal pain (a 2-3/10 intensity) from my scalp incision and craniotomy that is easily treated with some oxycodone 5 mg tablets. I did not have any complications from my surgery and I am grateful to Dr. Du's excellent skill for that fact, since there is a 3-5% risk from having the surgery. I also have evidence of left-sided moyamoya syndrome, but it is considerably less severe than my right side is. My hope is that the STA-MCA bypass procedure revascularizes and removes the ischemic impetus to keep further moyamoya fragile blood vessels from developing. Dr. Du plans to monitor my situation closely with CT angiograms and cerebral angiograms. I had my first post-operative cerebral angiogram on 7/31/2012 and it showed a wide-open anastamosis and successful STA-MCA graft. I can also feel and hear the whoosh in my right ear, but it is a good whooshing sound now which suggests plenty of blood flow to the right side of my head. I cannot thank Dr. Rose Du enough. Had it not been for her I would not have known that I had moyamoya. She is an excellent surgeon and I would not hesitate to strongly recommend her and her excellent team of clinicians.
Christine Chang, M.D. <cchang2828@aol.com>
Boston, MA USA
Wednesday, August 01, 2012 at 10:53:06 (EDT)

Invitation for all German-speaking patients: Moyamoya patients meeting, 8th September in Essen (Germany) Einladung zum Moyamoya-Forum am 8. September 2012 in Essen Referenten: Frau PD Dr. Khan (Zürich), Herrn Dr. Diesner (Essen), Herrn Dr. Roder (Tübingen) und Herrn Dr. Kraemer (Essen) Alfried Krupp Krankenhaus Essen siehe Link: http://www.krupp-krankenhaus.de/uploads/tx_crzevents/Einladung-Moymoya.pdf
Dr Kraemer
Essen, NRW Germany
Sunday, July 22, 2012 at 07:21:39 (EDT)

when I was 9years old my cousin was diagnosed with moyamoya after what turned out to be his second stroke. The first one 2 years before was thought to be a nonspecific menelogical incident. Since I had been having some of the same soft neuological symptoms my parents scheduled me for an angiogram which indicated I also have the condition. Luckily for me I have had only one small stroke at 19 from which I suffer some periferal vision loss. I am now 36 and approaching the next age group that has a higher incidents of stroke. It is becoming imperative that I start investigating the viability of surgery. This is my next journey with moyamoya.
brian arnold <mac2825@gmail.com>
wonder lake, il USA
Friday, July 13, 2012 at 14:55:41 (EDT)

Hi, My daughter Lana Just got diagnosed today with Moya moya, she is only 7 years old. We found out on the 4th of july that she has had 5 strokes, 2 that day and 3 old ones, and they dont know when she had them.I am very scared and I dont know what to expect. If anyone has some good info please let me know. Thanks
Heather <HMcMorrow1@gmail.com>
akron, oh USA
Wednesday, July 11, 2012 at 01:13:15 (EDT)

I was finally after 4 TIA strokes diagnosed with moyamoya disease in 2011. I have currently to date had 7 TIA strokes and the start of a heart attack. I hate having to be on medications. I have one attery on right side of my neck totally blocked and the left side had to have stents put in. I now have a stent in the left attery of my neck and one in my brain. I was diagnosed at Iowa University clinic and hospital. Since then I have been running into many medical problems and symptoms and most doctors dont even know about moyamoya disease. They have to look it up. I also hate that my friends and family are not educated about it either. Their needs to be more information available publicy and the doctors need to be more aware on this disease. It is complicated and not fun to have. Some days are worse than others and I dont even feel like getting out of bed. It is encouraging to read these blogs and know that I am not alone in this. I just wish that there was a more natural way to control it then medications and surgery. Oh yeah, I am 43 and had my first 3 strokes all at once on Nov. 2010. My left side is dramitically different than my right side. And my MRI scans look like someone took off the top of my head and blew smoke in the top of my brain. It is on both sides which the doctor said is rare. I am yet to get help in Indiana. I just moved back here from Iowa against my doctors wishes. I pray that Indiana is more educated on this disease....
Annette Raynae' Pechacek <camaro69hotgyrl@yahoo.com>
Indianapolis, IN USA
Friday, June 08, 2012 at 13:34:21 (EDT)

I was diganosed with MMD in November 2011. I started hearing a heartbeat in my first when I went to bed and then when it was all quiet. I was sent to an ear doctor who sent me for a test. It was then they noticed something was wrong. I went for another test the day before Thanksgiving. On my husband's birthday I was told I had moyamoya disease. I never realized all the funny feelings I was getting were TIA's. And I never realized on my left side 80% of my arteries were gone and everything looked cloudy(smoky). I went for surgery in January for a bypass and came home with a walker. I am still in physical therapy because the right side of my brain is not sending the signals that my left side needs. I eventually have to go for surgery on the right side. I am now on disability since my speech is not always good. It is a scary thought that you don't know what is going to happen from one day to the next.
Dawn <dawn.mcdonald42@yahoo.com>
Weare, Nh USA
Thursday, June 07, 2012 at 12:05:34 (EDT)

My 2yr old niece was just dignosed today with Moyamoya after suffering a stroke yesterday. The are in Reno NV and finding info for me of what to expect.
mandy sharp <mandy@grasshopperfertilizer.com>
Mt Vernon , TX USA
Tuesday, June 05, 2012 at 18:20:52 (EDT)

hi my diagnosis was made in 2008 via an angiogram, to be perfectly honest i was so scared because my doctors had to google to find out what was wrong with me, then they said we dont know alot about this desease and that i could be here today and gone tomorrow,which to be honest shook me up todate my consultant hasnt really done anything for me and i am scared everyday as to wether or not i will wake up in the morning so i dont sleep much dont want my kids to find me dead in my bed. my partner left me dont think he could handle it, niether can i, i suffer with severe migraine sometimes 4 times a week i am on medication but it does'nt seem like its enough, i am clinically depressed and suffer from fibromyalgia which i was diagnosed with in 2010 please give me advice...
catherine hattingh <katohattingh@live.co.uk>
england
Monday, May 28, 2012 at 10:10:24 (EDT)

I posted before when I got my diagnosis of MoyaMoya. I had my surgery on May 9th in the afternoon and got to go home before lunch on May 11th. My surgery was done at the Mayo Clinic, Jacksonville, FL by Dr. Ricardo Hanel (who is a MM specialist) and his fabulous band of characters. I had an EDAS and STA-MCA By-pass. The real kicker was that my middle cerebral artery was totally occluded and my right hemisphere of the brain was only getting 50% blood flow. Now, ain't that a kick in the pants? I am so thankful for my life.
Lisa McDowell <lsmcdwll@yahoo.com>
Jacksonville, FL USA
Tuesday, May 15, 2012 at 16:13:13 (EDT)

Sorry, not speak English. Hello, for information please. My daughter, 8 year old girl has a diagnosis of Moya Moya disease. We are in the state of the Slovak Republic in this country have no information about the disease. Please help. I do not know how to proceed. Thank you very much. Catherine Dingová, Slovak Republic
Katarína Dingová <kadinka92@azet.sk>
Bratislava, Slovenská republika SR
Monday, May 07, 2012 at 05:31:44 (EDT)

jus glad to find something to put my mind a ease
Cessia Woods
Houston, Tx USA
Tuesday, May 01, 2012 at 15:31:43 (EDT)

Dr. Gary Steinberg removed the right side of my pons in 1991. If I had MM, it wasn't called that at the time, but my headaches and the left-sided weakness certainly sound like what is being described. I have used a wheelchair since 1989 when I first had the AVM. I also had a surgery at OSU to remove the bleed. Then happened to hear about Dr. Steinberg's research and he had me at Stanford in two weeks. That was 24 years ago. I'm finding that my short-term memory loss seems to be getting worse. Has anybody had a similar problem? And MANY thanks for this website. All these years, I thought I was alone.
Raeanne Woodman nee True <awoodman4ever@wowway.com>
Columbus, OH USA
Monday, April 30, 2012 at 22:44:15 (EDT)

Hello, my name is Michelle, and my son Trey has Moya-Moya and Down syndrome. He had his 1st 0f 3 known strokes at age 11 in 2006. He has had surgery to both sides of his head. I'm interested in what type of speech therapy your child receives or communication device that you find helpful. He is verbal, but for people who do not know him he is hard to understand. With having Down syndrome (low muscle tone), the strokes which also have effected his speech, and having a hearing loss we are looking for new options.
Michelle <mscochran07@yahoo.com>
Baltimore, MD USA
Sunday, April 29, 2012 at 20:50:29 (EDT)

Hello Hello, I was diagnosed with moya-moya disease in 2000. I was ok after I had surgury until recently. My symptoms are coming back more often and lasting a little longer then before. I am from Nunavut Canada... anyway I'm just a little freaked out. I want to find a doctor in Canada who I can ask about a second opinion because I've been reading blogs and doing research, it seems that most people have had more then one surgery. Can anyone help me? Thank you
Myles <mr.gauthier@live.com>
USA
Thursday, April 26, 2012 at 23:00:44 (EDT)

I had stroke in 2004 and my right hand had weakness and had difficulty in speaking to people. My parents did a CT scan which as normal. I moved to Mumbai but had problems talking to people.In Dec 2010 I had a lot of problems with sleeping because of stress at work. On 1st Jan 2011, I had a second stroke while talking.I consulted a doctor in India , and had two successful bypass surgeries under Dr. B K. Misra.
Anil Kumar
Mumbai, India
Sunday, April 22, 2012 at 09:27:17 (EDT)

My 13 year-old son, Spencer had his first surgery on April 14,2011, at Arkansas Children's Hospital in Little Rock. Dr Elbaba performed surgery. That was his right side. My knowledge of moyamoya was extremely limited. I thought that since there was no problem in the other side of his brain(at that time),that was it. now we've found out that it is progressive and now affects the left side. I'm so thankful that i found this website. I was wondering if there are others from Arkansas on this site.
angela retherford <eik_570@hotmail.com>
paragould, ar USA
Friday, April 13, 2012 at 22:39:03 (EDT)

Hello out there in cyber land...My name is Geoff Kasper, I am 24 years old, and I was diagnosed with moyamoya disease back in 2001 at 13 years of age. But here I am now, healthy as an ox thanks to Dr. Jodi Smith at Riley Children Hospital in Indianapolis Indiana. I am hoping to be able to make it out for the gathering in Kansas City this year but after all, I am a broke college student...lol. I am open to any questions and hope to talk to people about the disease.
Geoff Kasper <jazzy_g06@yahoo.com>
Peoria , IL USA
Tuesday, April 10, 2012 at 14:51:34 (EDT)

I was diagnosed with Moyamoya a little over 4 years ago and had my 4 year anniversary from the day that I had surgery. I was getting ready to pursue my dream of playing college football but then got the news that I had Moyamoya and the my football career was now over. Although that was a very difficult day I realized how gifted I was to even be alive because my moyamoya had become so bad I was due for a major stroke that would kill me at any second. I have learned from this disease that although it makes life more difficult at times with migraines that are indescribable and other restrictions it has taught me that each day is a miracle and a gift and to not take it for granted. So always keep your head up and just keep battling through because everyday is a privilege that should not be taken for granted. Good Luck everyone who is still going through the testing and surgery procedures I know what it is like. Just stay positive it helps.
Tyson Daw <dawtyson2@hotmail.com>
Salt Lake City, UT USA
Saturday, April 07, 2012 at 17:58:35 (EDT)

I was just diagnosted march 2012. Looking to get names of Dr. for 2nd-3rd opions in MA. Thank you.
dc <c21dc@yahoo.com>
newton, ma USA
Saturday, March 31, 2012 at 20:49:05 (EDT)

sorry everyone . little better today. still scared by the way im leann im 43 , married . i also put the wronge email. its leannboyce@1mail.com . please email me. leann
leann boyce <leannboyce@ymail.com>
proctor, tx USA
Thursday, March 22, 2012 at 17:02:58 (EDT)

i just found out the 15th i have moyamoya. im scared, freaking out, need someone to talk to that is going threw this nightmare.please help
leann boyce <leann.boyce@yahoo.com>
proctor, tx USA
Tuesday, March 20, 2012 at 12:07:47 (EDT)

iwas diagnosed with moya moya last month.i had my revaacularization operation last feb 13. i wsnt able to movemy left part because of swollen left brain. now, i have rehab and going to walk soon. i am so thankful, it is cureable.
mica flores <mica.flores3600@gmail.com>
manila, philippubes
Wednesday, March 14, 2012 at 23:10:17 (EDT)

hi there...well where do i start!! my son was diagnosed with moya moya in oct 2005, he was 6 then. 2 years before that he was diagnosed with neurofibromatosis type 1. it has changed his life and the whole familys life dramatically. he was a perfectly healthy little boy when one night he got up and said he couldnt move his left side, i told him to stop playing 'games' and go to bed. i am so glad that i actaully sat him on the sofa. his eyes were rolling all over the place he couldnt move his arm and was slumpled on the left side... i called for an ambulance which rushed him to hospital...10 hours later he was in an induced coma, they found a bleed on his brain and needed to operate immediately.. over a few weeks i was told to expect the worst and to prepare myself. over the coming weeks he had his left kidney out, had a massive internal bleed and had a tracheostomy fitted...he was diagnosed with moya moya after all the tests came back and had actually suffered 3 strokes..he had multiple burr hole re-vascularisation. he will be 13 in 2 weeks and im so proud of him and all that he has been through. he has had no other strokes since his operation, and is having lots therapy and probably always will have lots of therspy. im so thankful that i made him sit next to me that night as he wouldnt be here now...
mandy fantarrow <mandyfantarrow@talktalk.net>
united kingdom
Tuesday, March 13, 2012 at 13:51:42 (EDT)

follow up from feb.17 operation last week a success ,stiches out all is fine according to drs. she will go back home and have periodic checkups at the MAYO clinic in jacksonville fl. they were brilliant and corrected the missed dignosis of the wilmington ,nc. drs. thank God good luck to you all bearing up under this horrific disease.
joe madigan <jvmadigan24@yahoo.com>
andover, meoustin USA
Tuesday, March 13, 2012 at 09:38:46 (EDT)

Thanks for your efforts, God Bless.
Gary Miller
danbury, CT USA
Monday, March 05, 2012 at 14:05:29 (EST)

All my tests came in and neurosurgeon called and said I've got the MoyaMoya! Time for surgery! Thanks for all the info that you've posted so that I can have an intelligent conversation with him next week. I thought the four strokes and 2 dissections were enough fun but no - it's MoyaMoya fun! HEHE
Lisa McDowell <lsmcdwll@yahoo.com>
Jacksonville, FL USA
Thursday, March 01, 2012 at 15:02:04 (EST)

Hello everyone my name is Shannon I am a 32 yr old lady living with moya moya disease. Even though it has only been a year since being told that's what I have, i went through bypass surgery, December I had two strokes the second stroke left my left side without use then I had an angiogram and they opened my artery which was the reason for the strokes then February of 2012 in began to had a pounding headache in my right eye doc said go to hospital had cat scan with dye . Then I was told your artery is closing ,another angiogram aretery was reopened again. So now my question is what's next I have never heard of this disease really need to talk to someone so if anyone is out there needing to chat about our lives please email me shannaboo28@yahoo.com
Shannon <Shannaboo28@yahoo.com>
Buffalo, Ny USA
Monday, February 27, 2012 at 23:16:10 (EST)

I have Moyamoya. I have gone through two bypasses within the last 2 years. It is very difficult for me to even think about was going on with my. I still get headaches. I am more aware what change are going on in my own head.
Marla A Castro <cmarla60@yahoo.com>
Ono, Ca USA
Monday, February 27, 2012 at 14:48:18 (EST)

I think this website is wonderful. Never heard of Moyamoya until this past Friday when my mom was just diagnosed with it after an angiogram. We are still trying to learn more about it. We thought she had a stroke due to her diabetes, buth that wasn't the case. I am just glad I find this website to get some great information and read other stories. Thank you!!!
Angie <angjh18@hotmail.com>
Raymore, MO USA
Monday, February 27, 2012 at 00:23:49 (EST)

Hi my name is Jenny. Tester we found out our 7 year old with down syndrom suffers from moyamoya. He has had issues walking and then his teachers called concerned with his writing and walking. I was called to get him from school after a fall. Took him to the local er where they did a cat scan. Said wasn't sure what could be causing the problems and refuted us to nationwide children's hospital. We took hi There that night. We found out they believe he suffered a stoke about 4 weeks ago. Monday more testing to decide if surgery is necessary. It's a definite possibility considering he has only 1 good artery running to his brain at this time.
Jenny <Jenny.myers88@gmail.com>
Shelby, Oh USA
Saturday, February 25, 2012 at 01:46:58 (EST)

I had 2 times of brain surgery, April and November in 2011. But still symtoms, some fingers and arm num and horrible headache. Im worried if I have to have one more surgery. I go to hospital for checkup in may :(
Connie <lable80@hotmail.com>
Seoul, South Korea
Thursday, February 23, 2012 at 17:33:08 (EST)

Im starting to get some of the old symptoms back again, just wondered if anybody else has im now 18 months post op
Sue Bennett <bennybennett@hotmail.co.uk>
Liverpool, UK
Wednesday, February 22, 2012 at 18:54:22 (EST)

My name is Sherrie Fortner and I had a stroke at age 7, and I am now 43. tThey did not have the technology available back in 1976 that they do today. They opened me up at my femoral artery and found a blood clot there, when they performed a CAT scan they found another on the left side of my brain. I was partially paralyzed on my entire right side. I am in no way so completely disabled I cannot walk. It does however cause me alot of pain. My foot will go into spasms so bad that it will go clear up to my hip. I hope the dr will tell me some good news after taking 17 vials of blood from me today.
sherrie fortner <hobbit0414@yahoo.com>
kansas city, mo USA
Wednesday, February 22, 2012 at 18:31:27 (EST)

For all who have posted on line I now know what you are going through because my fellow teachers wife has just been diagnosed with mmd.this is a learning tale for you.a month ago suzanne was in the market and could not get the last word"milk" out properly.her husband took her home.Her headaches over the month came and went.I can tell you that as of an hour ago the carotid artery operation was successful,now icu for a few days and then major surgery in another week or so. I cannot go further into this until i find if this works out and then i will tell all of you what,where when and how things are working out and where she luckily wound up going.her husband considers me his life mentor and we are close.my prayers are with her and all of you.I will let this site know what the results are as soon as I can.
joe madigan <jvmadigan@yahoo.com>
andover, me USA
Friday, February 17, 2012 at 20:34:00 (EST)

My husband (24yrs old with Type 1 Diabetes) had IC/EC Bypass surgery on Dec 6, 2011. The Neurosurgeon made it sound as if his very very narrowing arteries were a serious deal to us. When she explained MoyaMoya, we looked at each other like .okay? She emphasized how imperative surgery was. He only has arm and leg tremors when he smoked marijuana. That was his only symptom. After the surgery, he had persistant facial ticks on his left side (had surgery on right), blackouts, falling down constantly, dazed stares, completely different personality, he chokes and coughs on his saliva constantly, excessive saliva production so bad he fills an 18oz coke bottle in 15 minutes and SEVERE migranes from Hell!!!! I am having a really hard time understanding how before the surgery he had symptoms .000009% of the time and now he has symptoms 100000% of the time. We are frustrated! The Nuerosurgeon and nuerologist say well, with time it will get better once the arteries grow ..there are no changes!!!!! My husband is completely 1 million times worse than before the surgery and its ruining our marriage! When he complains of the migranes, they blow them off and gave him neurotin .it does nothing! He s been on Depakote and Keppra .still having seizures and the medicine has been configured about 10 times or more! We are losing hope and confused! Is this a misdiagnosis and an unneeded surgery? Or are there others out there that have the same issues?? I cannot even take him in public, he went from being a 24 year old to a 5 year old in a 24 year olds body. We have no support no help, no ideas, no options, I am in the Army and have to take so much time off work to care for him that I am about to be discharged from the Army!!!!!! ..PLEASE Help!!!!!!
Kyle Osmolinski <baconbits0115@yahoo.com>
Columbia, SC USA
Wednesday, February 15, 2012 at 23:33:22 (EST)

Hi, I was diagnosed with moyamoya after I gave a birth to my daughter,3 days after I had small bleeding in my brain..and hurra...they found this disease.I am feeling down and wait for additional checking and decision about the surgery.Are there any meds for moyamoya- my neurologist says there are non..Take care
Agnieszka Madaj <aga.madaj@gmail.com>
Bournemouth, United Kingdom
Wednesday, February 15, 2012 at 11:36:07 (EST)

My 18 year old son was diagnoised with MoyaMoya in October 2011. It took the doctors awhile to figure out what was wrong with him because on September 21st he suddenly went totally deaf and they say that is not associated with the disease. In testing him to find out why he lost his hearing they discovered that he has had atleast 2 strokes that did not affect his body. After further tests is when they diagnosed him. He has had one bypass surgery and is having another in June. Because of this disease he has had many complications in healing. Any support on how to keep him with a positive outlook that things are going to be okay would be greatly appreciated.
Stefanie <slw4woodsy@sunflower.com>
Tonganoxie, KS USA
Friday, February 03, 2012 at 15:53:22 (EST)

My son Brandon was 1 year 7 days when he had stroke like symptoms. He died within 24 hours of being admitted to Texas Childrens Hospital. We found out he had Moya Moya through the autopsy. This was in October 1985. I wish that well I guess we all know what I wish! Good luck and may God be with you!
Kathy D Johnson <kathntxs@hotmail.com>
Willis, TX USA
Thursday, February 02, 2012 at 14:14:56 (EST)

When I was twelve, I was diagnosed with mm. I have had both my surgeries and I'm still having a couple of issues. By any chance has anyone else had problems after their surgeries? Here recently, I have had no control of my right arm and my mouth. I have been biting my tongue much more and I accidentally punched someone. I mean it's almost like my muscle is spasming. I just barely noticed it happening and I had my first surgery in September of 07 and my second one in January of 08, so it's been a while.
Christina <snakelvr14@aol.com>
Stillwater, OK USA
Monday, January 30, 2012 at 16:04:27 (EST)

hello i think this page is fabulous. my little brother has just been diagnose at only 29. my family and i are researching to see if other family members should be tested
christina chavez <christinar0851@yahoo.com>
houston, tx USA
Monday, January 30, 2012 at 13:14:48 (EST)

My name is Pamela and my sister just recently got diagnosed with moyamoya disease. We had never heard of it. She is a nurse herself. Her neurologist told her she has had this disease since her late 20's but she never had any symptoms. She is now 44 and had a stroke on Jan. 3rd. Amazingly she has only weakness on her left side but does need the operation.two actually. This has been difficult but this website is so helpful. She is suppose to have an indirect bypass on brain. Anyone who could shed some light of the recovery period; I would appeciate your info. Please e-mail me. Many thanks!
Pamela Yee <Puccapay36@aol.com>
New York City, Ny USA
Sunday, January 29, 2012 at 17:27:42 (EST)

Hello I m a 33 year old young man who just have received the moyamoya diagnose. I think the plan is for me to get an operation in Berlin in the next few weeks. I would like to hear from someone who has had the operations. Can I live a normal life after the operation? Will the moyamoya come back? What is the diagnose for someone like me to grow old ? I know is difficult to say, but please let me hear your stories, and what the doctors told you ? There isn t much info about in Denmark!! Thank you Martin
Martin Faurholt <martin.lund.faurholt@skolekom.dk>
Holstebro, Denmark
Thursday, January 12, 2012 at 13:43:27 (EST)

Thank you for your website. I was just diagnosed on Jan. 7, 2012. You website has helped my wife and I have a little bit of peace about treatment and expections.
Scott B. <defibvt@gmail.com>
Glendale, AZ USA
Wednesday, January 11, 2012 at 13:00:09 (EST)

My name is Pam and i was dx with MMD in may 2010 when I had 6 mini strokes( just lost my speech) and was flown to Capital Heath Hospital. That where they did numerous test and found that I had 3 strokes that where silent. They say blood flow with the medication is okay now and dont need surgery yet. The headache that I deal with on daily bases are horriable. I work as EMT. If anyone has any sugesstion on how to stop the headaches. Please let me know
Pamela Gerkey <angelofdeath7929@yahoo.com>
Bridgeton, NJ USA
Monday, December 19, 2011 at 12:30:19 (EST)

Hi, my name is Tresa I am a 49 yr female that has moyamoya disease and has had two EC/IC bypasses. I also have a brain tumor that I was diagnosed with 9 months after I found out about the diagnoses of the MMD in 2003. This is to be removed in mid-Jan. Yesterday I went to my neurosurgeon and after test had been ran 2 weeks ago my results came back and I found out that I now have a aneurysm, he told me that MMD and aneurysms go hand in hand! Has this ever happened to any of you before? He said that MMD and tumors do not however tho. I was devestated!!!! Just curious about it. I know my dr. is excellant and knows what he's talking about but I'm just scared..thanks.
Tresa <tj98809@bellsouth.net>
Nashville, Tn USA
Wednesday, November 30, 2011 at 22:53:14 (EST)

I'm not sure if I've signed your book not, but anyway. I was also blessed with Moyamoya in 2009 after having two mini strokes in my frontal and occipital lobes. I was 37 years old. I am still having headaches, that medicines don't seem to help. Are you still having side affect from your moyamoya?
Amy Joseph <adennis3530@yahoo.com>
USA
Wednesday, November 30, 2011 at 11:04:22 (EST)

I am 28 and I have Moyamoya-like characteristics along with ACTA2.R179H mutation that causes weakness in the arteries. I have had 2 heart surgeries, 2 vascular surgeries, 5 abdominal surgeries, and now they are suggesting the bypass. I still have a 3 potential heart surgery and I'm wondering what's the point. The risk of having the surgery is the same if I don't, but I have a lot of pressure from family to continue. Anyone have any suggestions?
Kimberly <Kim@dizom.com>
Dallas, TX USA
Tuesday, November 29, 2011 at 12:58:12 (EST)

I am 44yrs old with moya moya I was told 1 month ago My name is ngaio waiting on surgery
ngaio brooks <ngaiobrooks44@gmail.com>
detroit, mi USA
Monday, November 28, 2011 at 16:51:42 (EST)

I'm 49 and was diagnosed with Moyamoya on Oct 28, 2011. I have been having problems with my peripheral vision in my left eye since the end of July. I was referred to a neuro ophthalmologist at Mass General Eye and Ear who discovered my disease through an MRI. I am completely asymptomatic (interestingly, he says the Moyamoya and the vision problem are unrelated). I have an appointment next month with an interventional radiologist at Mass General. I think the first sign of this disease showed up when I was 5 y/o. I started walking funny and was even in a leg brace for a short period of time. They did spinal taps and brain scans on me, but my symptoms mysteriously disappeared. I find it interesting that my vision problem is on the same side as my leg problem 45 years ago.... Has anyone else had visual issues like I've been experiencing? I tried to create a user name and password, but I must have done something wrong. I hope I can get that straightened out soon, so that I can continue to communicate with everyone who is in the same situation as I am.
Cheryl <cconley1@maine.rr.com>
Portland, ME USA
Monday, November 21, 2011 at 12:43:01 (EST)

Hi, My name is Maryanne and 6 weeks ago I had a stroke. After many CT scans, MRI and finally a cerebral angiogram I have been diagnosed with moya moya. My husband and I are very grateful to have found this site and found the information invaluable.We have been referred to Mr John Laidlaw. Does anyone have any experiences with this neurosurgeon?
Maryanne <m.maltby@optusnet.com.au>
Keilor Park, Victoria Australia
Thursday, November 17, 2011 at 05:30:46 (EST)

Hello, my daughter from 7 years old, had diagnose moyamoya when she was 4, she had 4 strokes and several tia`s. She had surgery 2 times with 2 direct bypasses and 4 indirect bypasses, and now she is having her third operation in December 2011.They will create holes in her head and they make a wire loose in her mind and the end of the vein they put on her brains ( invention from Boston), we haven`t got that before, so we hope this will help! I am very scared about the future, because she will grow very fast in her puberty and that will be very risky for her. When there are more childern who had surery in there younger years and now are after puberty i am very curious how they are doing? Maybe you can contact me than? we live in the Netherlands and my email is m.fitters@onsnet.nu Thank you, Kind regards, Mirjam Fitters
mirjam fitters
nuenen, netherlands
Friday, November 11, 2011 at 09:40:59 (EST)

hi. my daughter was diagnosed at the age of 4and a half after having a stroke aged 4.Dr's said she suffered from the age of 2 which was a shock as i thought she just was clumsy and suffered migraines as i had. she since had operations to improve blood supply which were succesful and was able to re-build her own blood vessels to prevent major brain damage. she was the fifth in the country at the time and there was limited info, i wish something like this was around then although with family and friends in health indusrty they gave me info which i passed onto the specialists themselves as they also had little knowledge..she is now 18 and nearly 19 she displays asperges type symptoms and am looking for anyone with similar experiences, we have nothing in the uk in the way of support so any info anyone wants to share or anyone wants to mail me feel free. x
rachel <rachelskidmore@rocketmail.com>
uk
Wednesday, November 09, 2011 at 16:01:28 (EST)

Hello my name is Laura and I was recently diagnosed with MM on October 31st, 2011. I had my first stroke July 31st, 2011 5 days after I had my fourth child. I am not going to lie I am scared as heck and still in shock. And I just wanna say thanks to DJ because if it wasn't for him starting this website I wouldn't have that much of a understanding of what MM is and I would have felt like I was alone. If anyone has any advice for me or anything they can or wanna share with me I would love to see what you have to say and what advice you would have. Like I said I just recently found out I have MM and I am scared as heck and right now just waiting to find out what the next step is for me.
Laura Becker <sde05_zcb08_jdb09@yahoo.com>
Omro, WI USA
Tuesday, November 08, 2011 at 13:20:26 (EST)

My name is Sherrell and I'm 35 from VA. January 2009 I had a stroke. Prior to the stroke I was very healthy and on my way to achieving my Black Belt. After endless testing I was finally diagnosed in July 2010 after having an angiogram followed by surgery December 2010 at John Hopkins. Its definitely a lot to go though. The hardest part for me is physically not being able to be the same person I use to be. I hit rock bottom but I'm still here. I have made it a point to live each day stress free. My motto is "it's not that serious". It's nice read your moyamoya stories and to be able to chat with you. I'm not alone. It's sometimes hard for people to understand what we are going through and feeling. No, it's not "just" a headache.
Sherrell <s_brogden25@ymail.com>
Fredericksburg, VA USA
Thursday, November 03, 2011 at 19:20:52 (EDT)

Hej! Jeg hedder Jette, er 41 år og havde en hjerneblødning for 3 år siden. Jeg har lige fået konstateret Moyamoya og skal snart til Berlin og opereres. Det kunne være interessant at høre fra andre fra Danmark som har moyamoya.
Jette kristensen <Jette.kristensen@energimail.dk>
Denmark
Sunday, October 30, 2011 at 11:51:39 (EDT)

Hello, my name is Crystal and my mother was diagnosed with MM when I was about 15 years old. She had numerous strokes starting in 1988 and had her surgery in 2006 at Stanford. She WAS Doing well considering that prior to her surgery she was having repeated siezure like episodes and could never be left alone. After the surgery, though she had a stroke and can no longer speak, her quality of life greatly improved and was doing well. She recently has begun to have severe headaches again and thinks she may need another surgery. i have three young children and hope that my kids dont develop this disease. My heart goes out to everyone on this site, because i know what you are all going thru.
Crystal Steverson <mrscriss@yahoo.com>
Tulare, ca USA
Wednesday, October 26, 2011 at 21:35:51 (EDT)

My 7 year old daughter was recently diagnosed with Moyamoya. I'm glad to have found this site. My head is spinning and I'm looking forward to browsing this site to help me fully understand this disease and what lies ahead for my daughter.
Leann <leannimal116@gmail.com>
Toledo, OH USA
Friday, October 21, 2011 at 08:43:46 (EDT)

can someone please wite back to my daughter i told my story in march 2011it would make her very happy my email is mcdowellcc@yahoo.com her name is crystle she is 22 years old now she was nine please read our story and wite back i fogot too had my email in my first story so now you have it much LOVE to my moya moya family i will be praying
cecile mcdowell willie <mcdowellcc@yahoo.com>
L.A, C.A USA
Tuesday, October 18, 2011 at 01:08:33 (EDT)

Hey, I came by this site while researching for a college project in my speech class. Although I don't have Moyamoya, my mother did. She actually passed away last year as a result of it. I am sad that she never got the chance to see this website, or the inspiration that I have found on it. During my informative speech on Moyamoya, I will definitely make reference to this site and hopefully educate some more people about this condition. Thank you everyone for posting your stories on here. It is nice to know there is hope and my prayers are with all of you.
Kirsten Bennett
Maryville, MO USA
Monday, October 17, 2011 at 14:45:08 (EDT)

Hi my name is Anja 39 years old, from Denmark. I had a stroke in march 18, I gave birth to a girl 10 mdr before. I get enough blood, so next examine, is about 1 year. I am looking for other moyamoya people in Denmark, for at høre deres historig, writen in danis.
Anja Poulsen <anja@landlyst21.dk>
Aarhus, Denmark
Wednesday, October 12, 2011 at 04:49:40 (EDT)

It's hard to believe that this is supposed to be so rare but I find more and more people who suffer from it. I have two aunts on my father's side, one passed away from this and the other just had brain surgery today and hopefully will recover quickly. I wonder if it affects a lot more people than they realized. Glad to read all the comments and how others have dealt with this. Thank you all for sharing.
Patti <patti.lufkins@vacationclub.com>
winter haven, fl USA
Thursday, October 06, 2011 at 14:40:17 (EDT)

Hi all, My name is Imelda, i was also diagnosed with Moya-moya way back in 2007 right after I gave birth to a healthy baby boy I was 26 years old by that time. Like most of you who are diagnosed with it, I was also lost of what the heck was it. Information over the internet was so limited and I was frustrated to understand it more.According to the explanations I got from my doctors is that the cause is unknown but most cases it happens during pregnancy, drug addiction or hereditary. I think it runs in my family, since my grandma had stroke almost 30 yrs ago and my mom have the similar symptoms as well as my sister. And my doctors said that it is rare neurological condition. It all started with series of headaches then it get worse, the headaches became constant (meaning I wake up and sleep with it), then numbness came in constantly as well on my left side of the body. Initially its just the fingers then the lips, legs and the back of my neck. And most of the time I felt that I was always about to collapse. I was blessed that I was diagnosed in the early stage and I found the correct doctors right away. Mine was a unilateral moya-moya and it was really in the beginning stage. But for 3 years I went on observations, numerous MRI, angiogram, spinal tap, blood tests and medications. For 3 years with the supervision of my doctors we were hoping that the brain can compensate by itself and I was able to manage my stroke like spells. but the progress was too slow and the symptoms are getting worse because of that I underwent a brain bypass last year (November 2010). So far everything is doing well, i still have numbness in my left fingers but way lot better and more manageable. I'm still taking Aspirin as my blood thinner and according to my doctors i have to take for life. I also try not stress myself too much and will have annual visit to my doctors and MRI since the damage in the right artery is still there and only made an alternate route for blood circulation and also we have to monitor the left side of the brain as well.
Imelda Yumul <imyumul@yahoo.com>
Anjou, Quebec - QC Canada
Sunday, September 25, 2011 at 00:58:15 (EDT)

My niece was diagnosed with MM yesterday and I have found your site to be comforting and will pass on the imformation to my sister and her family. thank you for the hope.
Char Willis
USA
Wednesday, September 21, 2011 at 01:37:58 (EDT)

I had a stroke 2 yrs ago when I was 26 (2 days after I gave birth to my beautiful baby girl). I was told that I had the stroke due to the straining during delivery. I've never done any research on MM because my mom researchs every thing and in fact she is the one that came across this website a few days ago. I have recently become interested in doing my own research and learning more about this disease. I know what MM is but what is TIA? I have not had surgery because my md told me "if you behave then you are good" (meaning if I don't have another stroke or spell).
Sarah <sarah.darceneaux@gmail.com>
USA
Friday, September 16, 2011 at 06:31:06 (EDT)

Hey all its just me again. I have had both surgeries done with in a week of each other and am now on the road to recovery. I had to fight every inch of the way for my surgeries my hospitals were not kind and it wasn't until I went on TV the radio and had a few stories in some news papers did I finally get my way, if you want anthing in Australia thats how it is if your a public patient, And the big deal was that they do not do the surgery in QLD But Sydney NSW which is in the next state. I now have have private health insurance and will never be a public patient. Lucky country for who is what I want to know. Anyway no point whinging. I thought that it would hurt a little more and I had 2 hell of a shiners (black eyes)and 2 very bruised ears I looked like I had done ten rounds with Mahamid Ali and lost every single one of them. I had scans the next day to see if the new vein had taken they were good nice and successful, thank you lord. The ended up doing my left side first as it ended up being the worse side the Prof ended up asking me which side I wanted done all I could say was surprise me. The doc also said that I bounced back really quick, I guess its the approach I had I wasn't gonna let this beat me, I didn't survive my miserable life so I could go out like that, so I'm still here and will continue to fight as long there is breath in me thats what I will always do. Thanks DJ for you wonderful website with out it I wouldn't have met the people that are post surgery and helped me with my nerves and am in contact with them regularly.
Della Johnson <dellarae1965@bigpond.com>
Brisbane, QLD Australia
Tuesday, September 06, 2011 at 09:09:33 (EDT)

This disease is so rare it happens once in a family, we are up to 4 now!!!!!! Why do some family members get it and not others? Is there any help for people without insurance to get checked?
Holly (Hawkins) Soldano <holly2kay@yahoo.com>
Dummer, NH USA
Thursday, September 01, 2011 at 20:19:36 (EDT)

I am a woman age 26 with moya moya disease since 1985 my mother had the same disease but found out to late.
ACACIA VANCIL <tinkegirl2004@att.net>
porter, tx USA
Tuesday, August 23, 2011 at 19:12:38 (EDT)

hello everyone .its been a while since i did a post i had surgery may 7 2009 im doing good just have a little problem with studdering and my balance alittle bit other then that im fine .i have a few head aches .I GIVE all praise to the MAN above GOD HE knows all about our probles he want put more on you THAN you can bare . so please stay strong dont give up you can make it I LOVE YOU ALL IN JESUS NAME . AMENCAROL EASON
carol eason <caroleason70@yahoo.com>
coats, nc USA
Wednesday, August 10, 2011 at 00:24:48 (EDT)

I was diagnosed with Moya-Moya back in 1986 and had two successfull EDAS surgeries performed at OHSU Doernbecher. I've lived a normal life, even got married bought a house and now have two kids and a loving wife, both of my daughters have had MRI\MRA and have been given clean bills of health by the same Neurologist that performed my surgeries. Their Pediatrician actually knew what Moya-Moya was and pushed it through our HMO.
Frank
Wilsonville, OR USA
Monday, August 08, 2011 at 16:07:32 (EDT)

I am looking for other moyamoya people in my area! My 10 year old daughter has moyamoya and it would be so wonderful for her to make friends with other kids in our area who know what she is living with. If you live near the fort bend county area in texas and would like to communate please email me at ledkins@sbcglobal.net Thanks
Rebecca <ledkins@sbcglobal.net>
Richmond, Tx USA
Sunday, August 07, 2011 at 16:50:50 (EDT)

For B.J. in Rosenburg texas!! I live in Richmond Texas so I am your neighbor. My 10 year old daughter has moyamoya and has had it for 4 years!! I was diagnosed today with moyamoya too. PLEASE get a MRA and all of your sisters too. It is better to know!!
rebecca <ledkins@sbcglobal.net>
Richmond, tx USA
Wednesday, August 03, 2011 at 21:36:43 (EDT)

Hello all. I last posted here a year ago. I was dx with moyamoya dx in 2009. I had surgery to open the blockage the in my brain that was causing me to have strokes. I am upset this morning. Now in January 2011 I was approved for social security for my headaches that are caused by moyamoya. I was living in Nebraska at that time. I was getting medicaid. Now I have moved to Georgia. Even tho I get social security because I can never work, the state of Georgia has denied my my medicaid because I am over the income guidlines. I get a little over $700 a month. How am I suppose to pay rent, food, clothes, and have money to see a neurologist and get MRI's and MRA's. Please I need feedback. Is this just a ridiculous to you as it is to me?
Sh <sha_phillip@yahoo.com>
Marietta, GA USA
Friday, July 29, 2011 at 09:00:53 (EDT)

My husband,matt, is 35 yrs old and has suffered wth 3 blood disorders for several years. They are laiden factor v...lupus anticoagulant inhibitors..and s protein deficiency. He has been on high doses of blood thinners. He had his first stroke last year in april. We thought it was due 2 blood clot disorders. However, he has had another stroke and 2 TIAs just this past month. He has been diagnosed wth mm and we were told it is as a result of the blood disorders. He is scheduled for bypass on aug 4th. I am so scared for him especially since it is 10x more risky for him wth these blood disorders. I was wondering if anyone else on here has clotting disorders as well. Anything I should know 2 expect as his caretaker for after the surgery? What do you all know is the real life expectancy prognosis of this disease...thank you
shari <mryarber@yahoo.com>
new port richey, fl USA
Friday, July 22, 2011 at 14:22:25 (EDT)

My husband has suffered from one stroke and 3 TIAs...the three being within this last month. He is scheduled for ECIC Aug 4, 2011. I was wondering if anyone on this site also has blood disorders along with their moyamoya? Matt has 3 blood disorders which have led to the cause of moyamoya. Any info would be awesome
shari yarber <mryarber@yahoo.com>
new port richey, fl USA
Thursday, July 21, 2011 at 21:54:31 (EDT)

hi, my name is vanessa. i was 40 living new jersey when i had my 1st stroke in 2004. i was paralyzed on my entire left side,it thought that due to my high blood pressure i had a major stroke. 2010 i had 2 more strokes with one in new jersey and the other in north carolina was told that i have moya moya disease i didnt want to believe it but was placed on long term disability from my employer. i ignored what the doctors said about surgery and started taking aggrenox. in 2011 i went to a specialist at john hopkins hospital- he specializes in moya moya disease. he said that i d/n have moya. july 1st i had my 4th stroke with left sided paralysis again, my health insurance is cancelled and now im applying for medicaid so that i will commit to having the surgery. i am scared so very scared, depressed and feeling hopeless. how did i get this terrible disease i dont want surgery. im praying but my faith is withering. thanx for letting me vent
vanessa <ms.mapp43@yahoo.com>
charlotte, nc USA
Thursday, July 21, 2011 at 18:01:37 (EDT)

I was diagnosed in Nov. 2008 two weeks after I had my son. I was scared as hell! My mouth started to twist and my right hand went numb. I went to the emergency and my pressure was high. The surgeon told me I had MM, and I needed surgery then. I just had a baby and my family didn't know a whole lot about it. So I was placed on Keppra 500mg from Nov. until March of 09. So i hadn't had an "episode", for almost 3yrs. Then May of this year, my immediate short term memory was really, really bad. I did see another neurologist and did the routine tests again. So next week I'll be seeing the neurosurgeon to schedule my surgery. My family wishes there was another way, I personally just want to get better. The blood vessel that's missing is controls my personality and speech, and I can't have that!
Letitia Finch-Germany <lgermany@uabmc.edu>
Birmingham, AL USA
Tuesday, July 19, 2011 at 10:18:42 (EDT)

My name is Heather and my 8 year old daughter, Ali, was just diagnosed with MM. Ali went in for a MRA to more closely watch a fibroma growing around her heart when the MM was discovered. She was diagnosed with NF1 when she was only 2 months old, and we've been told that both her fibroma and MM are related to NF1. We are going back to Boston Children's Hospital Monday to discuss next step. This site has been a helpful educational tool.
Heather <hmbenham10@yahoo.com>
Spencer, MA USA
Friday, July 08, 2011 at 19:15:32 (EDT)

My daughter, Bryanna, 19 yrs old, was dx with Moyamoya June 1st 2011 aafter she was hospitalized with a stroke. She also has neurofibromatosis type 1 and was treated for a brainstem glioblastoma multiforme when she was 6-9 yrs old. Unfortunately, the radiation treatment necessary to treat the tumor left her with a lot of health problems including moyamoya. She is being seen at Duke in NC and hopefully will have her STA-MCA bypass surgery before the end of this month by Dr. Britz. She is trying to keep her spirits up, but is still very upset with the dx, having lost some of her vision from the stroke, and anxious about the surgery. We are taking this one step at a time and trying to get through this new journey as best as we can. Wishing everyone peace and better health, Tammy
Tammy Boone <tammydboone@yahoo.com>
Greenville, SC USA
Wednesday, July 06, 2011 at 19:19:53 (EDT)

Hello all, My sister was diagnosed with MoyaMoya back in 1990. She was in her 30's. She died 6 years ago today at the tender age of 46. I like so many others had never heard of this diesease. We are a mix of creole and african americans with God only knows what elese. So we were shocked when she had a stroke in her apartment in Houston Texas and was not discovered until 3 days later by her neighbor. She was taken to Herman Hospital in Houston and placed in the psych ward. Somone said that she must have over dose from illegal drugs. None of this was true. My sister Patsy had never used illegal drugs. Her doctor who was treating her for corpal tunnel syndrome becuase she was a telephone operated for ATT, had just happen had gone to a simanar on MoyaMoya. While he was doing his daily visits he recoginized my sister and her MoyaMoya. He treated her for years and became her friend. I am now 44 and often wonder if I too am plagued with MoyaMoya. But like my other 4 sisters, we are too afraid to seek someone who could test us, if there is such a test. I just wanted to share my story with others and have someone that knows what its like to have MoyaMoya. Thanks for listening.
B.J.
Rosenberg, TX USA
Sunday, July 03, 2011 at 17:20:05 (EDT)

Hi, My name is Karina Christensen from Denmark. I am mother to Daniel who now is 16 years old. In 2001 he got the diagnosis moyamoya. The reason why I write to you all, is that he now has got a new diagnosis ACTA2,R179H. This new diagnosis is the reason for his moyamoya. It is only 2 years old and perhaps some of you also have this diagnosis. Daniel had a PDA repair at birth, he also has a hypotonic bladder, too large pupils (congenital mydriasis), problems with the lungs and his blood vene by the heart is also too big. I am not so good in understanding english and thats why I am not sure if I have registrated myself or not... But I think my information is important for all Moyamoya patients. Cheak if you also have ACTA2,R179H. It is not necessary that you have. I hope you think my information was okay to give to you. Best wishes Karina
Karina <kfc@post.tele.dk>
Brtoager, Danmark
Thursday, June 30, 2011 at 07:28:37 (EDT)

Hi,my name is Anna and a young mother, I was diagnosed with moya moya about 3 months ago, until now I still unable to accept how unlucky I am to get a disease like this! I was sad and angry! Now I am facing the fact that I need to decide on the surgery or not, and I am scared. Because there are so many things I haven't done, and my poor little child is only just turned 1! I had so many hopes for him and afraid not able to see him grow up... I have cried so many times over this, I don't know who I can turn to. In front of my family members, I had to pretend to be strong, like it is nothing really, but inside I am so scared. I want to thank you for this website, because it is one place I can share my fear, also able to open up about this rare disease. And last, after reading all the success story about the surgery, I feel better going to do it. Thanks everyone for share.
Anna
Toronto, ON Canada
Thursday, June 30, 2011 at 00:49:55 (EDT)

Hi, My name is Autumn I found out that I have MoyaMoya May18th I get my first surgery done May30th. My Doctor explained to me that the disease is in the advanced stage, that I could of had this way back at the age of 14. My emotions have been all over the palce, but I am happy to know that I am not alone in this . I am more happy to see that many are having long lives. If any one can share anything about this please e-mail me at tucgirl89@yahoo.com
Autumn Tucker <tucgirl89@yahoo.com>
Akron , Ohio USA
Friday, June 24, 2011 at 21:33:04 (EDT)

so i just found out that i have moyamoya and i have to take the blood thinner. i am having an angiogram in about two weeks. Yikes! i guess i am that one out of three million united states citizens with the syndrome. ohhh boy!
BRANDI LEIGH
PINE BLUFF, AR USA
Friday, June 24, 2011 at 13:14:01 (EDT)

Hi everyone, my name is Rob and I am 33yrs old. I am sitting in Barrow Nuerological Center in Phoenix AZ. I was told I either have vasculitis or Moyamoya about 2 weeks ago. Things are moving very quick cause now I'm here about to go thru some more scans and they say they will be doing a bypass operation.
Rob Harbin <harbinrobert@ymail.com>
Kingman, AZ USA
Wednesday, June 22, 2011 at 22:07:44 (EDT)

louise and i are off to sydney on next monday (the 20/6) for her angiogram, good thing the p&;c meeting got moved to the 27th. and every one has to cross every thing for us to be home on tuesday!!!!!!!!!
kim holt <redisg00d@yahoo.com.au>
newcastle, nsw australia
Thursday, June 16, 2011 at 03:58:22 (EDT)

G"day everyone, Your not going to believe this but I finally have my referral. Yayyyy sort of. Now all I have to do is go down Sydney and have the operation. I have been married for a week now and loving it. Yes I'm in a much better mood than the last time I entered something on this site. I have got to known some people on this site and it makes me feel good. Just knowing that I'm not the only one doesn't make me feel so isolated. A BIG THANK YOU TO DAVID FOR CREATING THIS WEBSITE. I know that I have to have big scary surgery but if the kids can do it I can. Well I will check in after I have had the surgery. Cheers
Della Johnson <dellarae1965@bigpond.com>
Brisbane, QLD Australia
Tuesday, June 14, 2011 at 06:26:39 (EDT)

i have a daughter named louise who also has down syndrome and autisum as well as many other problems and now moya moya she is 15 she has had at least 8 big tia's the bigest 2 in feb this year 2011. it has been a long road since then but with a great team louise she has moya moya as of the 7/6/2011 but with other complecation (not the normal moya moya) we will have her treatment starting very soon and i am glad i found this sight
kim holt <redisg00d@yahoo.com.au>
newcastle, nsw australia
Thursday, June 09, 2011 at 19:00:24 (EDT)

Hi again, Just thought that I would give you and update on my Moyamoya disease. I went to see a specialist in the disease in Sydney, I had not trusted the Neurologist in Brisbane to just leave me until I got worse. So off I went to Sydney its a loong drive. So after the G'Day mates and how ya goins I found out that I'm a massive stroke waiting to happen so much so the doctor wanted to operate on mee the folowing week, turns out that Im a right royal mess. You know I have to laugh and the crap they go on with, It took an hour to diagnose me properley, an hour I can't believe it dont get me wrong I couldn't look forward to this surgery any more than I do now if fact I can't wait. The problem is that my state has to pay for it, I'm in queensland and I've got to go to sydney, I could curse myself for not being with a health insurance fund, but I got now time for that as I have to arrange for the silly state to pay for it. I have been having a terrible time at work because the neurologist said that MMD would not affect my memory, my concentration or the fatigue levels. WRONG my poor boss and the team i'm sure felt like crawling into a hole as I'm told them this. The conclusion is I'm going to die if I do not get the life saving surgery I now need. I won't reach my 46th birthday and I'm already 45. And to think this all could have been avoided if I didn't have a arrogant neurologist, stay tuned and maybe next time you hear from me I would have had that surgery, and maybe I won't be so angry. See you round like a rissole mates
Della Tippett <dellarae1965@bigpond.com>
Brisbane , QLD Australia
Thursday, June 02, 2011 at 05:34:09 (EDT)

I was diagnosed in 1990, 1 year after being diagnosed with Type 1 diabetes which was blamed for my symptoms when stroke actually occurred. I was 12 years old at the time. I spent several months in and out of hospitals going through tests and such and on Easter Sunday of '99 while in the hostipal I was given a day pass to have dinner with my family, I flatlined(that experience I will share at another time)but recovered and was transferred to another hostital where I was finnaly diagnosed with Moyamoya. I had brain surgery at The University of Minnasota Hospital, performed by Dr.Heros. I can't believe I waited this long to look for others like me, but it feels good to know I'm not alone :)
Andrea Aldridge <aaldridge77@ymail.com>
Bonner Springs, KS USA
Tuesday, May 31, 2011 at 01:07:11 (EDT)

I was finally diagnosed with MM April 14,2011. I had been having TIA's, which my doctor diagnosed as reverse migraines, for a year and half. I recently had cerebral bypass in St Louis, MO at Barnes with Dr Zipfel. Surgery went well and I was so relieved to find a doctor in MO that had a clue what MM was. When I first found this site, I knew immediately thats what I have. I sure do, and am now a part of a research study at Washington University. Thanks so much for putting up this site. It is great to hear all the wonderful stories of hope.
Stephanie <sdavolt_king@hotmail.com>
Nixa, MO USA
Monday, May 23, 2011 at 21:23:52 (EDT)

hello there. if you remeber me, it is I the famous 15 year old that had surgery for this thing 2 years back. (I was 13 then). I wrote me story here before, and this time, I just want to say that I will be in Philly when the convention thingy comes around. If you want to hook up with me and my family, contact me! It would be great if us kids (my age and younger) could get together and hang out, compare thigs we like, dislike, stuff like that! ok, see you guys later!
Courtney <elphabafreak4@comcast.net>
SELLERSVILLE, PA USA
Tuesday, May 17, 2011 at 14:35:43 (EDT)

Thanks for having an internet support about this disease.Hope we can share also our story and help us also to know more about this disease furthermore in which my sister is on recovery period.More power and God bless
omega <omega.andres@yahoo.com>
Manila, Philippines
Wednesday, May 11, 2011 at 11:26:53 (EDT)

So very sorry ! My niece Jennifer is 37 years old and a mother of 2. I got so excited about this website I forgot to add that info.
gwen carnes <carnesgw@sbcglobal.net>
tulsa, ok USA
Monday, May 09, 2011 at 15:51:10 (EDT)

Hello. My niece Jennifer has just been diagnosed with MM and will have the first of 2 surgeries this week. She had her first stroke in 2002 and has had several TIAs since. Last week another stroke took her back to the hospital and finally a diagnosis other than 'high blood pressure'. Both carotid arteries are the size of string with no blood flow. The vessels at the back of her neck, trying to make up for the blockage have 3 blood clots and and aneurysm. I am so appreciative to you DJ, and all who have shared - it helps to lesson her anxiety. Question: my niece also have narcolepsy. Any one else with MM who suffers from narcolepsy?
gwen carnes <carnesgw@sbcglobal.net>
tulsa, ok USA
Monday, May 09, 2011 at 15:48:39 (EDT)

My daughter Jenny was diagnosed with Moya Moya disease 2 yrs ago. She has had the EDAS procedure in Madison, WI by Dr. Iskandar in October 2009. We have a great pediatric neurologist named Dr. David Hsu. She turned 18yrs old this week. Jenny didn't have any real noticeable symptoms till she was 15 yrs old. It's been an interesting few years. I was lead to this support site by my brother and my other daughter. I am so grateful for it. I will be keeping in contact.
Maureen Browning <browning.maureen@gmail.com>
Whitewater, WI USA
Saturday, April 30, 2011 at 09:40:11 (EDT)

Hello. My name is Karly. I was diagnosed with Moya-moya at the young age of six in 1995. I am now 23 years old in 2011. It's been a long road, and I still have much much more to go. I'm soo very happy I found this website. I haven't ever researched this disease before just because I knew there wasn't much out there until now apparently. If anyone has any questions feel free to email me. I know I'm young, but I've had countless number of angiograms and 4 surgeries already. Please feel free to contact me.
Karly <pulchritude3137@yahoo.com>
Denver, CO USA
Thursday, April 21, 2011 at 22:06:22 (EDT)

My name is Liz I was diagnosed with MoyaMoya disease on March 2, 2011. I am a half marathon walker and was having stroke like symptoms when walking 6-8 miles. I know now that I have had two TIA's in the past year. I was referred to Mayfield Clinic in Cincinnati, OH where Dr. Mario Zuccarello, MD a neurosurgeon at Mayfield Clinic and Director of Cerebrovascular Surgery at the University of Cincinnati Neuroscience Institute(UCNI) at University Hospital did my surgery on March 24, 2011. UCNI is emerging as an important treatment center for patients suffering from moyamoya disease. If anyone in the midwest needs a STA-MCA surgery I suggest looking into the Mayfield Clinic. The staff were wonderful. I never got an uneasy feeling from my experience and felt total confidence in their help. The team works with UC Hospital on a regular basis so communication is very good. I am three weeks into my recovery and look forward to hearing from other adults and reading about others recovery experiences. thank you DJ for the opportunity.
Liz Sabo Johnson <saboliz@cinci.rr.com>
Cincinnati, OH USA
Saturday, April 16, 2011 at 12:42:09 (EDT)

LastThursday, 4/14/2011, I was diagnosed with Moyamoya. I have doctor's appointments with a cardiaologits, blood and neurosurgeon doctors with in the next 2 weeks. My doctor told me that I should be very careful and that I would know some more information soon. I only know what I have read on line and in a document that my doctor gave me last Friday, when I went home from the hospital.
Mechelle
Alto, Tx USA
Sunday, April 10, 2011 at 18:40:54 (EDT)

After having a subarachnoid brain haemorrhage back in 2008 aged 27. I was diagnosed with Moyamoya. I have NF1 which Iv been told is linked to Moyamoya and was wondering who else has NF1 and Moyamoya?
Georgina Farrimond <g80affleck@hotmail.com>
Leeds, England
Friday, April 08, 2011 at 10:40:04 (EDT)

my son, spencer, started having numbness on his left side last fall. dr said it was migraine related. then, on feb 10 this year he lost complete use of his left arm. after multiple tests, he was diagnosed with moyamoya. fortunately, it only afects one side of his brain. he will have surgery later this month.
angela <eik_570@hotmail.com>
USA
Monday, April 04, 2011 at 10:42:11 (EDT)

My daughter is 10 years old and was diagnosed when she was 6 years old. She just had her 2nd surgery. We were told that some moyamoya kids have had other issues with the arteries in their lungs, kidneys and hearts. I wanted to know if anyone out there has had any of these issues and if so what they were and what the symptoms were. My daughter has been having problems with high blood pressure and has a had really bad cough for over a month. She is having an echo. on her heart and a MRA on her kidneys soon. But would love to hear from anyone who has had any of these issues or any other issues with their moyamoya.
Rebecca <rebeccaledkins@yahoo.com>
Richmond, Tx USA
Wednesday, March 30, 2011 at 20:22:06 (EDT)

Hi, I'm thankful for those who have shared their stories. I'm a mom of a 14 year old daughter named Sarah who had a brain tumor when she was six, she went through surgery, chemotherapy and radiation therapy. She went into remission in July 2004. By December 2006 she had a Tia and we didn't know what it was at the time but I took her to the hospital and niching was found. That would be a first of many tia's and her memory began to decline and she would have times of left side numbness and be fatigued. Finally the doc had her get an angiogram one year after these episodes were coming frequently. W had to take her to an adult hospital to have it done. They found that her right carotid artery was occluded(closed) so the docs put her on aspire. Well fast forward 4 years and Sarah is still having Tia's and is now on Plavix and lipitor plus her other hormone replacements. She was just diagnosed with moyamoya disease after her recent imaging. I've been trying to search information about this disease and I do feel sympathy for us moms and our children with this disease. My daughter is speaking and can do things not sports though and that makes her feel very different in junior high. I am thankful for those who started this place to share. Thank you for this help and hope. Our God is bigger and greater and his love is always there for us, our kids names are written on his hands.
Kristine beddingfield <Kmbeddingfield@yahoo.com>
Aledo, Tx USA
Tuesday, March 29, 2011 at 22:54:31 (EDT)

Hello Everyone- I've read all the posts regarding MoyaMoya. I have educated myself in this disease. Right now, I've just completed tests to determined if it is MoyaMoya. My neurosurgeon diagnosed me having vasculitis of the end of 2010. But to make sure, she scheduled me to have a brain biosys. After that, I had a spinal tap and brain scan. All three test were unconclusive. I was getting determined to get cured, and she decided that it was vasculitis and ready to put me on meds. Frustrated as I was, I asked for a second opinion (which is always good). So she referred to Dr Steinberg at Stanford. Because, I had done my work, Dr. Steinberg is well-known all over the country. Stanford is the only facility besides Boston, that is known for MoyaMoya. So, I met with one of Dr. Steinberg's colleagues, Dr. Dodd and he wanted me to get several tests done in order to confirm whether or not it's vasculitis or MoyaMoya. Dr. Steinberg's group are very professional and their facility is state of the art. They are going to compare the tests from my previous Doctor to theirs. If you are unsure, please look them up. Dr. Steinberg, Stanford hospital, CA for MoyaMoya. Good Luck to all!
nina vaca <ninav4@comcast.net>
san jose, CA USA
Sunday, March 27, 2011 at 18:24:22 (EDT)

Iwas diagnosed with moya moya in 2006.Iam flying for 1s.t. time on may 13t.h. extremely worried, but cant go through life saying what if. anybody got any thoughts or tips for me thank you . jill horn
jill horn <jill.horn@hotmail.co.uk>
porttalbot, great britan
Sunday, March 27, 2011 at 03:06:01 (EDT)

My name is Della and finally after 10 years I have been diagnosed with Moyamoya disease. I finally got a specialist at the hospital who wasn't happy with not knowing what was ve been diagnosed with MS, some sort of migraine thing that causes paraylis and when they couldn't find it they told me it was psychological, I tried to tell them it wasn't and they wouldn't listen to me. So I did what all people do when they told and went away I started working on my mental health, it wasn't until I had a serious episode, and was taken to hospital by ambulance that the hospital decided that they would refer me back to the neuro clinic with reluctance. Mind you they sent me home almost immediately because my episode had righted itself. Funny that. So I went home with the it's just psychological Della in my head feeling guilty that I had wasted everyones time yet again. I started looking up brain conditions on the internet and didn't find anything that wasn't depressing ie: everything. They finally seen me at the hospital they suggested I have an MRI which I did they have a mirror so you can see outside so you don't feel claustrophobic, what they didn't know was that it was pointed at the people taking the MRI I knew from the looks on their faces that it had gotten really bad. With the results coming my way I walked into the specialists room and he told me he didn't know what it was. My heart sank, it dropped on the floor when he said I am surprised you are still walking and talking anyone with that amount of damage shouldn't be. I thought I had PCNSV at first and pushed for an angiogram he refused, and then when it become his idea I finally got to have one and guess what it said I have Moyamoya disease. Yes relived to finally have a diagnosis but disappointed to find he was going to do nothing, I was told that when something happens then I will be taken to Sydney to be operated on, but I don't want to wait till I stroke out. Surely if I was a child they would take the risk. All my main arteries in my neck and brain are just about closed up. I am talking severly attenuating I'm only 45 and clearly am not ready to die I have had a hard life and am finally happy, really happy I would just like to enjoy it for a little while longer.
Della Tippett <dellarae1965@bigpond.com>
Brisbane , QLD Australia
Saturday, March 26, 2011 at 21:16:24 (EDT)

Hi again im sorry i fogot to add my E MAIL I TOLD YOU MY STORY ABOUT MY DAUGTHER CRYSTLE ON MARCH 21 hear is my email mcdowellccyahoo.com please wite back
cecile mcdowell
LOS, ANGLES , C.Au USA
Tuesday, March 22, 2011 at 15:26:03 (EDT)

Hi my moyamoya family my daugther was nine she was healthy the year of 1997 she came to me and said her right arm hurt it feel funny she said i told her to shake it off she did and went too play with her friends crystle had lots of friends that night crystle said her throat hurts i gave her something for pain when my daughter worke up she could not talk i took her to the doctor and told him what had happen the night befor she could not close her right hand are talk that was the last words i heard from my daughter he told me to take her to the hopital i did i told the doctors the same thing for seven days they did not no what to do they gave her a MRI but she kept moving so they told me to take her to children hopital in long beach when me and my husband got thair we talk with a neurology he said he would do a MRI when the next day came he came into my daughter room and said she have moyamoya i cried and then he said she would not be able to talk again crystle had two surgery in 1997 and they went well i thank god for that its 2011 crystle is in a alternative learning center crystle can hear very well she knows a few sighs due to her stroks crystle is on diffrent stages she can read very little and add but shelove her money smile crystle like going to her school she can be with people but none of them have moyamoya she enjoys the thing that they do like going on the train and shopping crystle sometime is sad she will write why i cant talk i try to explain to her it makes me very sad she hads lots of friends to play with when she was little now she just stay in her room and play with her dolls crystle takes cardene sr 30mg at nights if she dose not take her med she can have little tsa this happen only once crystle like to run she won frist place in the 2000 olympic we were very proud of her she would love to do that again crystle has one sister and two brothers she is the oldest she is now 22 years old and just need a friend. THANKS DJ
cecile mcdowell
LOS, ANGLES , C.A USA
Tuesday, March 22, 2011 at 00:56:55 (EDT)

My daughter who was nine years olds was diagnosed with moya moya shes is 22Years old she cant talk sometimes she is sad she have no one to play with when she come home from school
cecile mcdowell willie
LOS, ANGLES , CA USA
Monday, March 21, 2011 at 19:22:23 (EDT)

Our 6 yr old son was diagnosed this week with Moyamoya after having a stroke. We are at the very beginning of the learning curve and appreciate all the experience you are sharing! Thanks!
pritzlm
USA
Tuesday, March 15, 2011 at 21:29:47 (EDT)

My son was diagnosed with MoyaMoya in 2008 at the age of 3. He had the surgery on both sides and 2 strokes following his surgery. (complications). He is 5 years old now and is continuing aggressive rehab for PT, OT and Speech. This has drasticaally changed our lives. He is currently in a wheelchair and cannot speak to us. This Condition stinks, and I still want/need answers as to why my "typically" developing 3 year old all of a sudden one day has a stroke and then another in 7 weeks then surgery and two more the day after surgery. He had a 4% chance to have complications! 4% and it happened. Anyone else have complications with their child similiar to this. I would love to "connect" with someone else who can tell me this....
Janet <jskillin_23@yahoo.com>
Farmington, NH USA
Tuesday, March 15, 2011 at 21:21:16 (EDT)

hello i ahave a 12 yr old lil girl and she was having tia's in june 2 of 2010 had surgery june 11 2010 it is now march 2011 and we still have some bumps in the road alot of wierd problems like passing out the sez and not waking up they just keep getting worse even after upping to meds to 2000 mg a day but she is in great spirits and is more mad about not playing sports then surgery but i keeping getting the brush off every time we go to the er it seems like anyone have that problem? and thanks for making this site i was gonna go crazy with no idea what i was walking in to !
april lopez
anchorage, ak USA
Sunday, March 13, 2011 at 06:09:02 (EDT)

Hello everyone! I just wanted to share that yesterday (March 11, 2011), I ran a Half Marathon in 2hours and 50minutes....I know, not exactly the best finishing time, but the point is, I did it and I finished running 13 miles! This means that guess what? I believe that you all can do ANYTHING you set your mind to. Be confident, be happy and be true to yourself and go for your dreams and goals!!!
Claris Diaz <cmondiaz@comcast.net>
Cardiff, U.K.
Monday, March 07, 2011 at 15:49:15 (EST)

I was diagnosed with Moya Moya in 2007, I had a TIA in February of 2006, I was thought to have vasculitis at the time and went throught 6 months of chemo therapy and high doses of steroids and had another angiogram with no change, I was sent to Johns Hopkins for consultation for this also and the only way to find out if vasculitis for sure is to do brain biopsy which my doctor and I did not want to do. He had me consult with a neurologist and a neurosurgeon here in Kansas City MO, Dr. Jonathan Chilton recognized right away that it was Moya Moya and refrered me to a surgeorn at Northwestern University in Chicago, I had surgery September of 2007 and repeat MRI's since, this was on my right side of my brain only. I have had good results so far with no physical problems, except depression and other emotional issues. I would recommend that this is nothing to fool around with apprarently finding out I had had a stroke previously sometime in my early years and did not know about it I will be 50 years old in May and doing good.
Dea Elaine Kuether <dekuether@comcast.net>
Independence, MO USA
Friday, March 04, 2011 at 14:45:25 (EST)

Rachel, glad to read that the bypass was successful. Your account of your experiences was powerful. I'm glad you're better and that you have a positive outcome.
Toby Morris <tmorris746@hotmail.com>
Springfield, MO USA
Monday, February 21, 2011 at 15:04:52 (EST)

Rachel, Holli and I are amazed too at your diagnosis, surgery and recovery. We are so very grateful for the outcome. You are a lucky girl; lucky for the surgical solution, but lucky too for having a superior appreciation and understanding of the privileges of this life. Your personal testimony is indicative of that.
Clay Sanborn <claysanborn@hotmail.com>
Garland, TX USA
Monday, February 21, 2011 at 10:27:08 (EST)

My Moyamoya story plays out like an episode of mystery E.R. When I was four, I started having episodes where my fingers would go numb. It was always just one or two fingers on a hand, and it was never both hands at the same time. It was not particularly disruptive or upsetting, and it always went away after 10 minutes or so. I assumed that it must happen to everyone, so I never mentioned it. This continued until I was about nine, at which point the episodes stopped. Then, one day in April when I was eleven, I MAJORLY screwed up without knowing it. I had nothing to drink that day, I was outside playing in the hot sun, then I went inside and played a videogame that got me really worked up. Suddenly, I realized that when I tried to play the game, my left hand wasn't moving. I literally had to pry my hand off the contoller. By the time I ran downstairs to get help, the left side of my face was paralyzed. My mother immediatly took me to the E.R. When we got there, My left leg went numb and I started stumbling and had to be carried into the hospital. I had a CAT scan, MRI, and several EEGs to rule out siezures, and was finally diagnosed with migraine variant the next year. After that, I learned to live with the symptoms. The first hint that something was seriously wrong came at the beginning of my freshman year in high school. I tried out for the soccer team, and I noticed that I could barely run thirty feet without becoming dizzy and nautious. My vision was blurred, and my coordination and logic were wrong. Needless to say, I didn't make it on the team. After that I started noticing that I seemed to tire more easily, and sometimes became disoriented for no apparent reason. Then, I had my first TIA. I was at school, and we were having an outdoor cookout for some event. I got a headache, which quickly grew worse. I went to get a teacher and asked her to take me to the nurse, because for some reason I couldn't remember where it was. I lay on a cot for two hours in almost unimaginable pain. The tylenol didn't do anything, and sometime while I was there I lost my vision. My mom came to pick me up, and when I got in the car, visibly limping, she asked me what had happened. I didn't remember. Suddenly, I started having a hard time speaking. It wasn't just my speech, I couldn't even think right. Throughout my entire freshman year, I continued having attacks like this, with the frequency and intensity gradually increasing. These events were so nightmarish that I began to live in constant fear of them, I stopped going public places because I was afraid of having an attack. At school, I was always tired. All these times, the events were written off as migraine variant. Finally, in the spring of 2010, I went back to my neuroligist and this time, she sugggested that I get an MRA with my MRI. It turned out that she saved my life. I was at a camp in New Hampshire when My parents got the news last summer- I was diagnosed with bilateral Moyamoya syndrome. The day after I got back from camp, we went to Newport. On the drive over, My parents suddenly stopped the car, turned around in their seats, and told me that they knew what had been causing the atacks. They described it as, "narrowing of the blood vessels around the brain." I said, "My god, that doesn't sound good," and started crying. I refused to talk about it anymore until we got home. That whole day, walking around Newport, I kept thinking, "Am I going to die? Is that what they're telling me?" I remember having this feeling that things were not going to be the same ever again. That turned out to be true, but in more good ways than bad. I will never take life for granted again, and I try to live every moment like it's my last, because things really can change in a heart beat. I am now eight months out from surgery, I had an MRI 2 weeks ago, and the new veins have taken effect, and my outlook is very good. I want to thank the creator of this site for prividing so much support and information for my family and me. And for all the people here who have just been diagnosed or had a family member diagnosed, it's not the end of the world. Despite all the doom and gloom stuff you'll find on the internet, most of the surgeries are successful and chances are you will make a full recovery. I had my surgery done at Children's Hospital in Boston, and the people there were amazing. They had me up and walking again three days after the surgery! Good luck to all
Rachel
Northbridge, MA USA
Friday, February 18, 2011 at 20:35:13 (EST)

ih my name is emmily and my family was told that i had moya-moya when i was three but i was one when i started having mini epodesunlike a lot of poeple i was somewhat lucky my doctors hsd my try two diffent meds umtil they finlly found a med that work but that wasnt good enough for my mom mom and dad they wanted a cure so they kept going when they found the surery the doctor they found said he had never done it on a kid so they kept looking until they found doctor scott and he was well quilefind for the the job at hand so that was it we went to boston by this point i am six and the first surery they did was the right and what can i say doctor scott did a great job to weeks latter i went it was about two weeks after that that that i had my storke and it braught the world crush down around it for my family because i had lost use of my left side it was then that three things became know one was that i would have to learn how to write,walkand talk again two that i was going to have to have another surery and that this was going to be hard on me and my family so the sceond surery rolls around i am gald to fully recovered of the the storke and sceond surery turns out to work i was one of the lucky ones i am sixteen now and happy to tell very one on there that i am that i have been almost four years without a thing
emmily
USA
Tuesday, February 15, 2011 at 22:50:32 (EST)

I was diagnosed with Moymoya at the age of 2 in 1988. So needless to say I don't remember much (I just remember the popsicles and all the flowers and baloons at the hospital) but my mom told me stories that I had several strokes and seizures. One of which had caused paralyzation on my left side of my body. At the time Moyamoya was unkonwn and my surgery was experimental. I have 2 soft spots in my skull and a scar. Because it was so unknown doctors told my mom it was possible I wouldn't live past 7. I turnrd 25 yesterday. School was and is still hard for me. I was in special ed though most of elementary and middle school. I even had to take percautions in gym class and had to have a helper there to make sure I wouldn't get hurt. I guess the reason I'm looking more into it now is I want to have a family but am terrified that my children will get this. I don't want them to go through what I went through. Since Moyamoya is still being researched I guess I won't know till they are born, Unless any of you know where I should go or what to do to try and prevent this. Any help or insight would be appreciated.
Jennifer Carlson <jjc0215@hotmail.com>
Shoreview, MN USA
Saturday, February 12, 2011 at 14:37:47 (EST)

My father was diagnosed with moya moya Jan 1999, when I was 16, now Im 28. It had a similar beginning, he was a hard worker with headaches, then mood swings to very angry. He had strokes and then the surgery within the first month. He was given 6 mths to live, now its 12 yrs later. But honestly I am not sure if its been easy. For the first 5 years he lived at home with my mom, @ the time 3 yr old brother, and I. He yelled alot and began weird tasks, like rearranging the furniture. Thought this was being disables and not allowed to work, then drive. He became violent toward my mom and I and refused treatment. Eventually in 2004 he was placed in a home after being reported lost in his neighborhood he grew up in, Uptown Pittsburgh, by a local fire dept. (Thank You to them)He was in this first home for less than a year. Here he broke out numerous times, was violent, disruptive, and we were no longer allowed to bring him home for visits, returning him was never easy. My mom lost everything during this time, her job, then the insurance, and eventually this home came after our house and my dad became awarded to the state. The next home he went to provided him with a room and he was able to go outside and walk, because it was out of the city, (He knew his way around, but would forget where is was going). Here he has lived for the past 6 yrs. Recently he has developed problems with the circulation in his legs and no longer walk. He is in a sad state now, and we just got to see him yesterday. He's in diapers and we were there for 3 hrs, he flipped out and the orderly came because he wants to go, but physically cant. This is one of the most painful experiences for a person. to slowly deteriorate. I love my father and am deeply saddened to know that a great man feels so alone and helpless. I am so excited to find this site to share information and no longer feel lucky the rare family to deal with this. Usually when I tell someone what my father's illness is they try to rename it dementia, which is a part of the illness. however there are parts that the person can engage, the conversations may last briefly and the topics may reoccur, (My dad wanted me to order two XL Pizzas within the 3 hrs visit :)But I think the old memories have stayed and love keeps him alive. I truly wish I could remove this disease from hurting people. But when my father was diagnosed the internet first came out, and my mom and I could not find anything on it, not even in medical journals. Now there are a few, but better than none. That's why I am truly appreciative for this site. I wish all the best to all of you. I have read that Stanford has had success on younger children to perform surgery and aid in the brain development. I hope at the time when my father finds peace, that some university will take a look to see if there can be any benefit from this--to society. For now all we can do is pray<3
Tanya Riston <tanyariston@gmail.com>
Erie, PA USA
Friday, February 11, 2011 at 08:53:43 (EST)

I was dx with Moyamoya in Dec 20, 2010,By a Dr Zauner in Santa Barbara.(after suffering from headaches for many years) He ordered SPEC scans to check the collateral flows. These confirmed that there was significant flow on the right side. On Jan 18 i had surgery. I spent 4 days in the SICU. I am home now 22 days post op, after spending 2 weeks with a friend. I have noticed changes in how I am feeling for the better. I will return in march for a follow up.
Cindy <Cbohannan777@att.net>
Visalia, Ca USA
Wednesday, February 09, 2011 at 16:18:47 (EST)

i was dignosed with moyamoya in 2009.
barbara doig <barbaradoig@yahoo.com>
glenside, pa USA
Tuesday, February 08, 2011 at 14:06:22 (EST)

Hi my mom had this disorder and she died form it when I was ten. I'am six-teen now and what to tell my side of the story. My mom went to the Dr. and they told her that she was crzy that nothing was wrong with her, that it was all in her head. Then one night after my step dad put me to bed my mom and dad were just haing out and my mom went into the other room. My dad herd a screem and ran in and found my mom on the couch with her eyes rolled back in her head. When the amblince finally got there he followed then and almost forgot me at home. I did not know what was going on... all I knew was mom wasent there. We went to the hostpitl and she was fine and we went home atleast that how I rembered it. My mom had all the sergery but it did not work it just got infected and got worse. But the worst day was when I woke up to see my grate grandma crying. When I ask her what was wrong I didnt expect to here what she said... your mamas died honey! I ran into the room where my cousin and I was sleeping and woke my cousin when she asked what was wrong I told her and my grandma came in and we all layed on the floor and cried. I just didnt want to beive that she was going to die I rember going in the room to talk about taking her off of life support but I didnt know what they ment I was only ten. I wish I would have spent more time at home instead of at my grandmas. I have a huge amout of regret for not being there for her. I want to learn more about it... please write me!
Narissa <celrod@wildblue.net>
White Cloud, KS USA
Saturday, January 29, 2011 at 22:33:35 (EST)

I'm hoping that some of you who have gone trough a similar experience to what I will tell you can tell me of your recovery/recuperation so I may pass it on to my son. This is what has happened: We have a 39-year-old son who was first diagnosed with moyamoya at age 8 after a small stroke. He was treated at Good Samaritan Hospital in Portland, OR. At that time, they prescribed Dilanten for about 3 years and tapered him off of it, thinking that it was something he would outgrow as he got older. At age 17, early in his senior year in high school, he again had a stroke - it seemed to go progressively over several days, until we, his family, determined that something was going really wrong. This time, after consulting an adult neurologist at Good Samaritan, they prescribed aspirin each day for the rest of his life. That was all. Now, we have found out that the moyamoya comes back in the 30s or 40s, which his did. We were so naive that we didn't realize what was happening, and since he's single and was working hard with heavy machinery, under considerable stress with his work schedule, etc., he contributed his continuing headaches with an injury he'd had through work. He lived with this headache for 8 or 9 years, but the last few months before his stroke in Oct. 2010, the pain had gotten much worse and it affected his personality and irritability. Even though he was seeing doctors in our small town, he apparently didn't tell them much about having the moyamoya in his system from earlier and was blaming all of his pain on a reoccurance of the earlier injury. Consequently, the right treatment was not done until after his stroke on the left side, a trip to emergency, and subsequent trip to OHSU in Portland, OR, where a week later he was operated on by Dr. Aclan Dogan. Dr. Dogan found that his blood vessels were too fragile to simply connect new arteries to, so he did a "patch" on the brain to start new vessels growing. Kyle spent a week in ICU, 3 more weeks recuperating, and finally went to intensive rehab at the RIO Center at Legacy Good Samaritan in Portland. He is now still doing daily therapy while living in an adult foster home in the Portland area. Dr. Dogan is waiting for his 4-month checkup to decide about doing the same kind of surgery on the right side. Right now our son is very worried about the 2nd surgery since he's had such a struggle after this one and still doesn't have full use of his right side. He can walk, and his right hand is doing better, but he can't write or eat with it. He also has "neglect field of vision" in his right eye so has limited vision. He has gotten the idea that the surgeries will only keep him alive another five years and is really wondering if it's all worth it. Can anyone give me your story about what happens after 10 or 15 years? I know each person is different, but he needs encouragement right now to go with the many prayers from many people, so if you can help us, I would appreciate it.
Diana <diana704@yahoo.com>
The Dalles, OR USA
Thursday, January 27, 2011 at 04:42:13 (EST)

Hi there. My 10 years old daughter has just been diagnozed with bilateral Moyamoya. It started with an TIA just after christmas. Here in Norway the Neurosurgeons have not much experience when it comes to treating Moyamoya surgical. So we hope for an operation somewhere abroad, perhaps Europe. Where in Europe is the best hospital for treating Moyamoya for kids? Hope for answers! Erlend, from Melhus (Norway)
Erlend Sæter <s.erlend@gmail.com>
Melhus, Norway
Monday, January 24, 2011 at 09:29:05 (EST)

I am 41 and going in for surgery on Thu. I had a stroke in april 10 and have been steadly worse since then. Thank God for this site so I know I am not the only one.
toni maxie <wonderwoman7828@yahoo.com>
New Orleans, LA USA
Sunday, January 23, 2011 at 11:49:27 (EST)

My son, 9 years old, had an operation on MMD at Seoul National University Hospital last December 27. I took him there after a lot of studies through the internet, in Korean, though. He has shown a headache after working out or sometimes weakness of a left arm and a leg after severe crying for about a year. We had him tested by MRA and he was diagnosed a unilateral MM dease. I realized that the parent of a patient must try to find a right doctor, I mean, who has a lot of experiences on this rare desease, which is the only way that can save precious time and your family. The doctor told me to give my son as much water as I can, so that the blood can flow well and chances of TIA can be reduced. With a lot of case studies, the doctors in Seoul National University Hopsital seem to be excellent in treating patients like my son. I hope you can get valuable information not only here but also many Korean web sites.
MBS <1goodsong@hanmail.net>
Seoul, South Korea
Wednesday, January 12, 2011 at 05:40:43 (EST)

My name is Debra. I was diagnosed with MM in January 2009. I had some severe complications, and had to have my first surgery on June 5,2009, and another on june 17, 2009. I want to try and gain supporty for myself and my husband,it is a very lonely world,for me. It feels as if no one really understands all the pain and difficulties,along with the frustration. I will try and check back in later.
Debra Patterson <hatgirl2009@gmail.com>
Nashville, Tn USA
Friday, January 07, 2011 at 14:38:13 (EST)

My Aunt was just diagnosed with MoyaMoya at age 49. She suffered a major stroke about a month ago, and is still in Extensive Rehab here at Ochsner. She has suffered some brain damage, can not speak, her right side is very weak. This is her second stroke, one which was a mild stroke happened about 2-3 years ago. Her Medial Cebebral Artery is constricted basically blocked. Surgery was brought up and I work in surgery so I am asking around to find out more about the procedure. Very frustrating for her since she can not speak for herself. Prayers please as I pray for the rest of you and other families that are dealing with this. If there is any information you would like to send to me about the ECIC bypass surgery, please feel free to email me. Thank you so much for this site!
Kellie Seal <kelliemseal@yahoo.com>
New Orleans, LA USA
Tuesday, December 21, 2010 at 14:45:39 (EST)

Hi, my name is Ewa and my three year old daughter, Anna, has moya moya as a result of a gene mutation that she has (ACTA2 R179H). She has had a number of strokes and in September had the EC-IC bypass on both sides of her brain at Great Ormond Street, London. After the first surgery she had a really bad stroke which has left her disabled and unable to speak/eat but she is slowly getting better, and the good news is that we do not think she has had any strokes since. We live in Birmingham, England and would love to hear from anyone in a similar situation.
Ewa Scudamore <ewaandluke@yahoo.co.uk>
Birmingham, England
Sunday, December 19, 2010 at 15:38:16 (EST)

hello again Im now 6 weeks post op from my bypass surgery which was done by my excellent surgeon Mr Javedpour in the Walton Centre in Liverpool. Im feeling great apart from a bit of dizziness and some headaches but so far so good Im looking forward to returning to work when Im fully recovered
Susan Bennett <bennybennett@hotmail.co.uk>
Liverpool, England
Friday, December 10, 2010 at 20:03:39 (EST)

i am a 37 yr old female,who was diagnosed with moya moya N 2008(a lil ova 2yrs...)im now dealing with reality&acceptin; that i was also CHOSEN....
syreeta armstead <syreeta.armstead@yahoo.com>
philadelphia, pa USA
Thursday, December 09, 2010 at 21:24:37 (EST)

I was diagnosed with Moya Moya in August of 2010 at Hillcrest Hospital after experiencing a BAD headache that would not go away. After my 2nd trip to the ER, many CAT scans MRIs, MRVs, a few seizures and after a visit with my regular doctor, I was told I had this rare brain disease called Moya Moya and that I had had 5 mini TIAs thus far. I was told that I needed to immediately be transferred to the Main Campus of the Cleveland Clinic where there were more experienced doctors and better tests that could be run. I was scared. But I think I really hadn't accepted it at the time. After lots of experimental testing and scans and pictures my stay finally ended at the Cleveland Clinic. It was to be set for me to have EDAMS surgery, revascularization surgery of my left side of the brain. I do not have any functioning artieries on my left side. My vessels are so small that they are like hairs or they are all the way constricted. My surgeon, Dr. Peter Rasmussen, told me I would be having a surgery where they take the chew muscle of my left side and cut it and place it on my brain. It acts like "sod" and hopefully in 6 months new vessels will grow. I was having seizures, or TIAs, not sure what they are, up until my surgery, so I was very scared and worried. But I made it through. September 27, 2010 I had the surgery. I was in the hospital exactly one week and dont remember much of anything other than waking up in the recovery room and my head hurting something awful. They gave me morphine, and I guess thats when I lost my memory of the hospital stay. I am back to work already, almost just a month and a week after my surgery. I dont reccommend that to anyone. I was being stubborn and pushed for it. Sadly, I started having these TIAs or seizure things again. I believe I went back to work to soon. Having MoyaMoya is a very scary thing. Its been a emotional roller coaster for me. Its been a learning experience for me. There are not many doctors who know much about it. Alot of my learning I find myself on the computer. That sucks when your looking for support and you see some of the information that is on here. If I can help anyone, I will. I, too, need the support. I am only 33 years old. I am not Japanese. I do not have Japanese in my family. Its hard. Im finding out the antiseizure medicines Keppra and Zonesimide that they put me on cause me to be this emotional wreck that I am, but I am not sure my options at this time as I am having more TIAs or seizures. I just advise anyone who is having any symptoms not to wait. Go see the doctor. Even if its minor. If I didnt get a headache, I wouldnt know I had this. That was my blessing. Good Luck and God Bless all of you going through what I am going through.
L A Lamar <lovnlaya@gmail.com>
Cleveland Heights, OH USA
Wednesday, December 01, 2010 at 21:07:06 (EST)

I would like to comment about my recent moyamoya revascuralization surgery. I got this surgery Nov/16th 2010 by Seoul National University Hospital's Dean of Neurosurgery Dr Kyu Chang Wang. I was sufferring secondary symptoms of MoyaMoya and this doctor saved through revadcuralizing nerves but unfortunately, some of my nerves had to be sacrificed in order for me to reconnect the other big nerves and I was having various symptoms such as having extreme headache, vomitting, dizziness and some anorexia. I'm going to have to wait for a while to see what the MRI is going to tell me but since only 5% of people in Korea get this disease again out of 30, 0000 people and I think this surgery went fine. On the other side, my family history, there were people who were having hypertension and I will have to deal with BP level reduced. It's been two almost two weeks, i'm still taking normal medications such as penytoin, gaster, lenipril, ormetesen. And in Korea, penytoin is not the best drug use for the people like sufferring a lot of headache and I'm about to substitute through taking other anti-zeisure medication. Dr. G. Steinberg, If you have any clent that who had been sufferring through moyamoya, I want you to tell me who had one because I want to have a connections with them. Thank you. JungHyun (Kevin) Han
JungHyun Han <fearless0202@hotmail.com>
Seoul, Korea
Sunday, November 28, 2010 at 20:50:24 (EST)

I got in a car accident 8 yrs ago, got northflighted to a hospital a couple hours south of where i lived. After alot of testing and things they came to the conclusion that i had right side damage to my brain, and left side trauma to my face(4 metal plates, 19 screws, and a plastic peice for my eye socket). They were sort of confused why that was, but that was their findings.Somehow thats when my neurosurgeon, who had studied in japan for 8yrs., came into the picture and said, no she has moya-moya syndrom. At the time I was 18 yrs old. The accident was most likey caused from a mini stroke. In which case others were injured as well, not too bad, but i'm sorry for that. Now I will be 26 in January and the only time i've experienced another stroke was in the hospital.Had to be on blood thinners and angiograms, testing frequently. Then i had insurance, and wasn't able to work because I had brain surgery on the right side of my head. I was only the second person the doc had performed this particular surgery on, so i was kind of nervous, well brain surgery is sort of nerve racking in itself i suppose. It was a procedure that, there's a film inbetween your skin and your skull, they removed that film and placed inbetween my skull and my brain right over the carotid artery. this film somehow produces it's own veins that continue to grow around this main vessel allowing blood flow, even when that main vessel is still detiererating. Intersting procedure to me, i had 46 staples going from the top of my forehead around the curve of my head and down to the top of my ear, my temporalis mussle on the right side isn't there you can feel my skull when you touch that area, because they removed it and placed it up on top of head for protecting and so it would not looked caved in. In the past i became a smoker again, the doc did not like that. I am no longer a smoker and over came that evil urge.If you have moya-moya and your a smoker as well think about your life.I have a two year old, and breastfed until he was 2, so I haven't been on any blood thinners for about 3yrs. Like I said i've had insurance in the past, not always, and this doc and always seen me for the treatment that i need. I went 4 hours down to see him and get back on the plavix i need, with no insurance and he wouldn't see me without a couple hundred dollars right then. I guess I feel like I dunno what I was thinking going down there expecting free treatment anyway, except that I dunno who paid for it in the past when i didn't have any insurance. I was deeply sad and had to leave, feeling lost and alone with no help with this damn rare disease that no on knows anything about. For some reason i've put off the thorow(however spelled)research in Moya-Moya syndrom. Now, i feel like my life is at stake and i need to somehow seek the help that i need without insurance, trying to look for some of that as well. I have never met or even spoke with anyone else that has this disease. And I think i'm more ready then i've ever been. It feels good to be able to tell my story and I'm really looking for some feedback on it. As well as suggestions on other docs, organizations something........thank your everyone for taking the time to read my story i'm off to see if i can't read some more of yours!!
Leah <Sassygrl_7679@yahoo.com>
Grawn, Mi USA
Monday, November 22, 2010 at 14:24:41 (EST)

Hi my name is Sabina, I come from Polen, my daughter was moya moya, is now after the surgery but is still not well and I do not know what to do.
Sabina Kacan <sabinakacan@wp.pl>
PYSKOWICE, Polska
Sunday, November 21, 2010 at 12:03:27 (EST)

Hugh, Welcome to the mm site.I read your entry to the guest book.You need to join the moyamoya web site that is free to get the answers you need. I was diagnosed with mm in 2002 and would be lost without the support I have fould on this site.
Sharon <Skay2449@mchsi.c0m>
Evansdale, Ia. USA
Friday, November 19, 2010 at 22:53:15 (EST)

The daughter of a friend of mine has recently been diagnosed with MM,in adlulthood, and we were wondering the best questions to ask of the consultant surgeon. If anyone out there has ay suggestions or answers that may be of use too the family could you please post them on this website, we will be keeping an eye out for information. It is good too know that there is information and support out there for people who suffer from this traumatic (for the family as well) condition.
Hugh Swain
Bristol, UK
Thursday, November 18, 2010 at 09:39:47 (EST)

I have moyamoya disease. I was first diagnosed in March 2009. I had two surgeries, which were successful, but I had a massive stroke after the 2nd one which left me paralyzed on the left side. I am still in therapy, and trying to recover.
Tiffany Jo Tosh <tjtmtsc@aol.com>
Whiteville, TN USA
Wednesday, November 17, 2010 at 09:29:41 (EST)

hello moyamoya family, just an update on our son carrington age 9, we were diagnosed with the disease in april of 2010. Had our first surgery july 1, 2010 and that was very successful, he now has 45% of blood flow on the right side of his brain. Now we will be going in for the 2nd surgery at Vanderbilt Childrens Hospital on Wed Nov 10, 2010. Please keep us in your prayers and thougts as we are one big family, if you have any questions please feel free to email me on your condition or your child's or any updates on carrington. Thank you, Stephanie D.
stephanie demoss <D.Stephanie73@ymail.com>
nashville, TN USA
Monday, November 08, 2010 at 21:12:03 (EST)

I was diagnosed with MoyaMoya on Christmas Day 2006 at the age of 47 after having stroke like sympthoms and seizures. I had a STA-MCA Bypass surgery on my right side in March 2007 @ Arkansas Medical Centers in Little Rock Arkansas by Dr. Ali Krisht and his wonderful medical team. I have not had to have the left side done yet. I have never been so afraid in all my life! It took me very little time to recover and today I feel great with no signs of the MM any more. I am truly a walking miracle and I thank God for letting me live to see my grandchildren.
JR Benson <Jrbenson01@ymail.com>
clinton, ms USA
Monday, November 08, 2010 at 16:23:17 (EST)

hello moyamoya family our 9yr son Carrington will be going in2 surgery number 2 4 this disease the first surgery went great he did really well he had surgery on the right side and lood flow is already at 45%percent coming from 15% since July 1st Carrington's surgery is set 4 Nov10th this wed as many of u all know this is a very scary time 4 the kids and parents and family, friends please keep us in your prayers those of u that just found out that u or your child has this disease feel free 2 drop us a line on this page or facebook remeber love all u and we r all FAMILY
stehanie demoss <dstephanie73@ymail.com>
nash, tn USA
Monday, November 08, 2010 at 11:41:09 (EST)

I just got diagnosed with moyamoya about 3 weeks ago when I went to the hospital after suffering a stroke I thought. They told me they discovered a brain tumor about the size of an orange and that I had moyamoya and they told me they knew nothing of the disease and sent me to another hospital. They planned to operate on me Nov. 8 but then Medicaid denied me and now the surgery is cancelled. They were going to do the bypass surgery so they could remove the tumor which is so big it is causes brain tissue to die. I am very scared and disappointed and would love any advice anyone has to give. My nuerosurgeon is so upset because of the red tape in this country and he feels I will eventually die without this surgery. The main thing is to remove my brain tumor so he can do the bypass so my brain can start receiving blood and to remove the dead brain tissue. It was hard enough just to find a surgeon who has done this before and we are both so frustrated right now. Thank you for reading this and if you have advice for me..I would appreciate it greatly.
Julie Swafford <julieswafford@yahoo.com>
St. Petersburg, FL USA
Saturday, November 06, 2010 at 14:33:55 (EDT)

My 35 year old wife passed away in May 2010 after several months of treatment for CNS Vasculitis at L.H.S.C. in London Ontario Canada. It was just recently from autopsy reports that I learned it was not Vasculitis,but was Moya Moya,which I had never heard of or was it ever mentioned to us. When I look back, every symptom was there. If there is anyone else in southwestern Ontario who has been diagnosed, how and by whom did you get the diagnosis? My main concern now,is if there is a test for our 5 year old son that should be done? If Bonnie from Statford Ontario Canada who posted here Apil 16 2010 could get in touch with me that would be great,as we are from the same area. I tried to contact you but was unsucessful, I hope all is well.
David Nevill <dwnevill@amtelecom.net>
Vienna, On Canada
Saturday, October 30, 2010 at 21:52:51 (EDT)

I have been through this with my son and we had a very successfull outcome Please Ring if you wish to talk 0413001894. My wife and myself would love to help, we felt very alone at the time
colin Kennedy <colink@alltools.net>
Melbourne, vic Australia
Thursday, October 28, 2010 at 23:52:50 (EDT)

I am 28 yr old korean/american, and I was diagnosed with moya moya. I had a stroke last March 2010. That was when I discovered my disease. I was flown to the trauma center in Orlando, FL. I spent the first 6 weeks in the hospital, I was paralyzed on my right side. Since then I have been rehabbing and working out. My first surgery was successful and the next will be in December 2010, before the holidays. I am thankful to be alive and have a great family and support group.
Crystal Lytle <cmrbuckeye11@yahoo.com>
Winter Garden, FL USA
Friday, October 22, 2010 at 09:26:01 (EDT)

Im a 37 yo f and i have moyamoya. I had 3 silent strokes then I had a mini stoke and contiued to have a total of six of them on 05/29/10 and was flown from Bridgeton hospital to Capital Health Center in Trenton. Thats where I was DX with moyamoya, I am currenty taken the medication route.
Pamela Gerkey <angelofdeath7929@aol.com>
Bridgeton, nj USA
Wednesday, October 13, 2010 at 19:41:26 (EDT)

Was diagnosed over Memorial day weekend. Seem to see a recurrent theme about headaches after surgery, is this the case and if so why?
Mark DeBole <markdebole@msn.com>
Grand Island, NY USA
Wednesday, October 06, 2010 at 16:16:00 (EDT)

First of all if anyone wants to contact me go ahead. Most of you folks are younger than me. I am 52,white male, but my symptoms are really good. I had 2 strokes at 45. However the only real problem now is affects of sight.I can legaly drive, married and living in our home. All my functions are fine with exception of my eysight. I passed the drivers test with use of glasses. I have heard of some patients with MM, having tremors? For those who do just what are you refering to? Are there many people in my age bracket? I have not yet had any surgeries done. I have been waiting to here from Dr Stiengurg at stanford.
joel lunning <jklunning@hotmail.com>
plymouth, wi USA
Tuesday, October 05, 2010 at 22:54:13 (EDT)

Many thanks to BJ for the work she put into this,hope she has helped other families that are going through what she is,I am very proud of her........phiked
Catherine Pierce <cappysue@aol.com>
Ruckersville, Va. USA
Saturday, October 02, 2010 at 01:53:10 (EDT)

hello my name is courtney and i am 14. last year, in april of 2009, i started to have these major headaches. everyday, i would have theses headaches and they wouldn't like go away! my parents did everything they could, but no one seemed to know what was up. so one day when i was in the car with my mom and my sister cassidy, my mom got a phone call, saying we needed to get to grand veiw PRONTO. i burst into tears, scared. i mean you would to! so then they took me to grandveiw, then people from CHOP came and took me there. and this was july 23, i know this because the next day we were going to see the jonas brothers live. bad luck for me :P so my dad did some research and found boston's childerns (chob how i say it :) ) and he said they had a whole lot of stuff on moya-moya. so, in augest i had nmy sugery. we were in boston for like two weeks. it took me only 4 days to get the ok to go home. im a fighter! if you have any questions about me, or moya-moya, i will do my best to answer them. just shoot me a email!
courtney <elphabafreak4@comcast.net>
sellersville, PA USA
Tuesday, September 28, 2010 at 09:19:46 (EDT)

Hi everyone, its been a couple of years since we posted on this site, and decided to post further comments. Our daughter Rachell (18yrs) suffered a stroke following a brain tumor and radiation which caused moyamoya to develop. She was operated on by Dr Andrew Law in NZ 3yrs ago now. She is doing well apart from her learning abilities and memory has declined. Due to Rachell's brain tumor, it has caused obesity problems and we are now wanting to conside gastric bipass surgery for her. I was wondering if anyone else has had this type of surgery or procedures who is living with Moyamoya also? We have approached a couple of private surgeons, but they get put off very quickly in us when I explain about Rachell's health conditions, as this disease is unknown to many doctors. Any help or comments would be greatfully accepted.
Leanne Prestidge <prestfamily@xtra.co.nz>
Auckland, New Zealand
Tuesday, September 21, 2010 at 01:05:17 (EDT)

hi I was diagnosed 6 weeks ago and my head has been all over the place trying to deal with it all. My surgery is scheduled for 1st week in November and im very scared
Susan Bennett <bennybennett@hotmail.co.uk>
Liverpool, Merseyside England
Monday, September 20, 2010 at 13:59:05 (EDT)

Hello & God Bless to all...It's been a while since I've been here, sorry! For more details, feel free to email me--but to put it briefly, our 8-yr old son, Rhylley, was diagnosed with MM when he was 5-yrs old. He's since had EDAS surgery on his right side only...(So far the left side hasn't gotten bad enough.) Anyhow--my question for any & all, is this: have any other children been diagnosed with a Morning Glory Disk and/or were born with an imperforate anus, in addition to MM? All info is welcome, thank you!
Lynette <lynetted28@yahoo.com>
Hagerstown, MD USA
Friday, September 10, 2010 at 11:23:59 (EDT)

My son (13) has just been diagnosed with moyamoya and I feel like I'm in a dream. Does anyone have any experience with this in Australia and are there any recommendations of surgeons who are experienced with the type of surgery required
Sally
Melbourne, vic Australia
Thursday, September 09, 2010 at 07:16:53 (EDT)

Hello!!! im a 23 yr old female who has been dealing with mmd since 2007.. i have already suffered a stoke and a few TIA.. im writing here today though because i recently became pregant and all of my doctors are giving me mixed advice and comments weather or not i should have a natural brith or just get a c section if anyone on here has any insite on this please write back thanks!!!
Jamie <jdmreyna03@yahoo.com>
antioch, ca USA
Wednesday, September 01, 2010 at 22:23:24 (EDT)

My Best Friend was diagnosed with MM, after 7 years of headaches followed by stokes which have taken her speech and impaired her right side of her body.She had surgery 2008 knowing that the surgery would not correct what she already had lost.After surgery she suffered another stroke,she is now up in a wheel chair and can wheel herself around.Thumbs up and thumbs down and I can make her laugh and smile.She has a communication book and can point to her needs.This disease is progressive and moves quickly.This disease is about getting the word out there and catching it before the stroke take away speech and movement and brain damage.She is my Best FRIEND. I am thankful for this website. It is very important to treat this disease early.Thanks for getting the word out!
Susan Matzdorff
Peoria, Az USA
Sunday, August 29, 2010 at 00:06:28 (EDT)

Hello my name is Jermile Richards i was diagnosed with the Moya Moya in the second week of Jan of 2010, I was home one mornig just got out the shower and wasn't feeling good at all, I worked the night before and got home that mornig around 9 or 10am. I went to take a shower to go back out and meet my boss for a early lunch and when I got out the shower i dryed off and was just hot as you what and was sweating really bad I was home alone i got to my cell phone and called my mom and she had told me to have a seat and I told her i was already down, well she called my grandmom to get them to check up on me and she also called 911 and told them what was going on, they took me to the hospital here in Cartersville and they didnt know what was going on and the doctor that was there seeing me didnt think i was gonna make it and told family and friends to say there good bye's cause once he put me in the comma i wasn't coming out of it, so they called around to see who could take me and got intouch with Emory they said they could help me out so i was life flightd to Emory. they later slowly brought me out of the comma and was diagnosed with moyamoya , I stayed in ICU for 3 weekes and then was transfered to Shepared Center where i had to learn how to walk,eat and everything. I was at the Shepared Center for 6 weeks then the days pasted I was getting better day by day so I then was strong enough to go the pathways its a out patient for Shepared Center and was there from march 3rd until april 16th.I had my first surgery on March 23th that was my right side of brain and my second one was May 27th on the left side of brain pretty painful but we made it. So from December 28th until april 16th i was away from home, family and friends. My mom was with me the whole time and my dad came down when he was off. Now its Aug 28 and i am back to full strength, it was a long jounery and i thank God for each and every minuet
Jermile Richards <jermilerichards79@yahoo.com>
Cartersville, GA USA
Saturday, August 28, 2010 at 13:46:49 (EDT)

Anybody have a problem with sleep apena. i have moyamoya and 1 1/2 post surgery. was diagnosed with this now.
paris <paris29sc@yahoo.com>
columbia, sc USA
Saturday, August 28, 2010 at 08:36:37 (EDT)

Hi I'm Janice, and I was diagnosed with MoyaMoya in February in 2010, I have had both surgeries done, and will going back to school at the end of this month! I am so thankful for Dr. Nussbaum!
Janice <Jlfisch01@hotmail.com>
Mtka, Mn USA
Saturday, August 21, 2010 at 19:02:34 (EDT)

Thanks, for sharing your story about Moyamoya disease. It was very touching to see what you've gone through with having your son diagnosed with this rare disease. It was also heartwarming to see how it all turned out well for him eventually. Unfortunately, this is not so in every case. But we hope that with increased awareness of this disease, we will have more treatment options and success stories like yours. Thanks for sharing your story.
andrew <andrewfaniku@yahoo.com>
Amarillo, TX USA
Saturday, August 21, 2010 at 08:40:49 (EDT)

Hello. We live in scotland and have been told that our 7 year old daughter may have moyamoya. Her scans are being sent to london for confirmation. We have been devastated as you all will understand. We have so many questions and now, having found this site, hope that someone out there can help answer them. Katie has no obvious deficicts following her stroke (an'incidental' finding on an MRI to investigate headaches), should we still consider pre-emptive surgery? Several people on the site have spoken of the importance of hydration - is this only true after surgery or from diagnosis? If anyone can help, or pass on any info at all we would really appreciate it.
jackie bell <jac.scot@hotmail.co.uk>
glasgow, scotland
Friday, August 20, 2010 at 08:53:49 (EDT)

Hello, my husband was diagnosed with MMD on July 6, 2010 after having a stroke in the back of his brain. He had MMD on both sides of brain. Spent a week and a half in the hospital then sent home to wait for surgery 2 weeks later. He was doing great, we ate out, walked the yard, watched tv and had a great 2 weeks. On Saturday, July 31st he ate breakfast, then lunch. Was doing great then got a headache, went to bed and started thrashing around. We had to have him airlifted to Vanderbilt, he had had a massive brain hemmorage from all the moyamoya veins that had formed. He passed away on Sunday, August 1, 2010. Less than 30 days from first stroke. This is a very dangerous disease that needs to be found very early. (my opinion). I saw the scans with my husband and moyamoya looks like a large hairball on the brain. So sad that this disease is so dangerous to its victims. But, it is good to know that there are some on here that are doing great and it makes me feel better knowing that some have been cured.
Denise <dscott462006@yahoo.com>
Nashville, TN USA
Monday, August 16, 2010 at 22:36:34 (EDT)

Hi everyone, It has been 5 years since I have been diagnosised with moyamoya on May 26,2005. I am wanting to get back in touch with my moyamoya family. I regret that I have been gone for so long. I am doing great!! Thanks to Dr. Steinberg and his team I am here today. I am starting a PHD progrom in Health Psychology and taking Nutritional Response Testing classes also. I want to give back to my community the support and love that they have given to me. Take care all and hope to talk to you all real soon. Yassi
Yassi <Runity@aol.com>
Brentwood, TN USA
Saturday, August 07, 2010 at 23:51:56 (EDT)

What is a good way to talk to someone with Down Syndrome, age 23, about an impending surgery for moya moya. Any suggestions?
Jean Walker-Wiley <handswithheart.jean@gmail.com>
Reston, VA USA
Tuesday, July 27, 2010 at 21:39:43 (EDT)

This is my first post!! I always check out the guestbook and messages but have never posted before...but feel I need to tell my story in case there are others experiencing the same symptoms. I am a 42 year old, asian female. I was diagnosed with MMD April 09 and had the STA-MCA surgery on the left side in November 09. My symptoms were paralysis down my right arm and sometimes down my right leg for about 2 minutes after exercising, having a coughing fit, laughing too hard, crying, etc. It happened if I was hyperventilating. After a couple of minutes, I would be completely back to normal. But over time my head always had a foggy feel to it, sometimes could not focus if someone was talking to me, felt "off" all the time. Went to neurologists who could not find anything wrong after having numerous MRIs. Finally a stroke specialist had a closer look at my veins and said "has anyone mentioned that you may have Moyamoya?" What is that I thought?! It took over 2 years to get a diagnosis after seeing 6 different specialists! My advice is to always get a second or even a third opinion if you feel something isn't right! I could have left it at "it's just a rare type of migraine" but I knew it was way more than that. I had a follow up appointment in April. Everything looks great...the MMD was also occuring on the right side but so far it seems that the surgery on the left has corrected this. Hopefully it will stay that way! This website is excellent and it's the best place to get information on this disease.
Debbie Kozai <dkozai@rogers.com>
Toronto, ON Canada
Tuesday, July 20, 2010 at 22:44:54 (EDT)

I am a Grandparent and Guardian of a 19year old Yound Lady who was diagnosed In April of 2000. She has had 4 brain surgeries. Both left and right sides of front and back of the brain. She is on medication for this but also for depression. She at times can be a very loveable young Lady but as she matures her body matures not her mentality. She has been deemed to have a 3td. grade education level but has graduated High Shool and went to a Vocational school for six months and graduated from there. I am very proud of her but as time goes by she gets harder to control because she feels that she can make her own choses and that she doesn't have to listen to me or anybody else. I am not being able to handle her change in moods. She gets very aggressive and has been known to call the police and tried to have me arrested. Her Father passed away in 2003 and her Mother had a stroke in 2009. Her Mother and Grandmother both have this same disease. I need help and ideas on how to find a way to help her without making her feel that I'm trying to control her but letting her feel good about herself. God Bless To All who may read or respond. Please Help!!
Donna Bostic <funboydwayne@yahoo.com>
Lawrenceburg, Ky. USA
Tuesday, July 20, 2010 at 15:49:51 (EDT)

I'm a 32 year old women from Norway who got this diagnose 1 1/2 year ago. In Norway they don't treat this disease. How dangerous can that be? Is there any one else from Norway her?
Siv <sbialgje@online.no>
USA
Saturday, July 17, 2010 at 17:56:08 (EDT)

my name is donna miller and i have a 3 year old son named daylon he has moyamoya
donnal miller <dlmiller7141@yahoo.com>
portland, ore USA
Saturday, July 17, 2010 at 12:36:45 (EDT)

I had a sta-mca bypass in novemeber of 2008 thanks to my surgeoun Dr. Zucarello at the mayo clinic here in cincinnati ohio I can say I am a survivor of moyamoya. When I had the surgery I was very lucky because there was very little blood getting to the right side of my brain. I owe my life to my Doc. I am getting ready to go to see him for my continued follow up and worried will have to have the surgery again due to some of my syptoms coming back. It is great to now have this website and to see how many other people are suffering from the same disaese and to be able to compare what I have gone through to others. I just wish they could tell me what caused me to get it. Thanks so much for having the website a place to go an know you are not alone.
Laurie Rieger <yoda.blue@hotmail.com>
Cincinnati, Oh USA
Thursday, July 15, 2010 at 11:10:37 (EDT)

We became members of the MM family in 2006 when my son was diagnosed at 7 months of age. He is 4 now and is doing well. We are expecting son #2 in September. I have come across some information about banking the baby's cord blood to use as a possible stem cell treatment for stroke. Has anyone else heard similar info, or any ideas? I would love to get all the input I can. Thanks, Abbe
Abbe Harpp <abbeharpp@yahoo.com>
Indianapolis, IN USA
Tuesday, July 13, 2010 at 14:59:31 (EDT)

I am 15 years old and have just been diagnosed with moyamoya. It looks like I'm going to be getting the surgery, and I was just wondering what the options are for that as far as different procedures.
Rachel <chsanborn@charter.net>
MA USA
Monday, July 12, 2010 at 18:06:48 (EDT)

UPDATE:all the testing I have done I finally had the surgery. On May 3rd of 2010 they did the EDAS surgery on me. My surgery was on my left side only the right side is trying to heal itself. I spent 5 days in the hospital came home and then had a seizure, hospital forgot my seizure medicine. Had alot of problems with the hospital so we now are in the process of sueing them. I am going on 2 months recovery and I am feeling fine. I am off the seizure medicine and doing good. I will go in December for another test just to make sure the blood is following and to make sure the right side is working.
natasha weigl <pitcher911@aol.com>
bethany, okla USA
Saturday, July 10, 2010 at 16:01:48 (EDT)

my friend had moyamoya (she has wridtband) and i made her a huge card and she got alot better
sala
USA
Thursday, July 08, 2010 at 23:06:58 (EDT)

Hi its Vickie 46 mother of 2 from Melbourne fl. My last post was April 15, 2010. I'm almost 26 months post ECIC and Right temple by-pass. current meds for Moyamoya Topamax 250mg 2 x times a day (500)mg daily to help control my headaches and 325mg Asprin I am doing great thanks to Dr Hanel of Mayo Clinic in Jacksonville Fl. and Dr. Unger here in Melbourne FL. Still no change since May of 2008!! I am still running and finished my first 1/2 Marathan last year and plan on running 2 1/2 Marathan this year!! Funny the running seems to help me feel better with the headaches and I have lost weight!! I know blood work looks better :-). God bless everyone with the disease and God Bless your families! Celebrate Life everyday!!!If you would like to email me with questions or my case please feel free!vickieanthony@yahoo.com
Vickie Anthony <vickieanthony@yahoo.com>
Melbourne, Fl USA
Wednesday, July 07, 2010 at 21:12:53 (EDT)

Hei. Olen 36 vuotias nainen Suomesta. Minulla todettiin MoyaMoya vuonna 2008. Minulla on päänsärkyä, näköhäiriöitä, ajoittain voimattomuutta ja huimausta, puutumisia jaloissa ja käsissä. Olen etsinyt Suomalaista vertaistukea, mutten ole löytänyt. Minulla on 2 vuotias tytär, toivottavasti hänellä ei ole tätä sairautta.
Piia <piia_kuitti@hotmail.com>
Nurmes, SUOMI
Monday, July 05, 2010 at 16:14:34 (EDT)

7-14 for suture removal and evaluation. Befor March of thisI am a 56 year old male who recently underwent bypass on my right side. I had my surgery at the Cleveland Clinic. My surgeon was Dr. Peter Rasmussen. I am feeling much better since my surgery (6-17). I return to the clinic on year I had never heard of this disease along with my Dr. in the Youngstown area. They said I have never had a stroke. My Dr. had been treating me for migraine like headaches for the last 10 yrs. or so. I would lose partial vison in my right eye along with wavy zigzag lines. The vision thing would eventually clear but would be followed by a debilitating headache for almost 24 hrs. It was after my Dr. offered me some Relpax pills for my next episode that things changed. I took a Relpax when one of my headaches started around Thankssgiving. I had a bad reaction . I started sweating, chest pains, difficult breathing and the worst headache ever. I reported this to my Dr. and he said it was time for a brain scan. I had a MRI/MRA done in Youngstown that had abnormal results. I was sent to a neurologist and was told I needed to go to the Cleveland Clinic as I had no blood flow to the right side of my brain. I was eventually diagnosed with Moyamoya and told I would need surgery. After getting an angiogram a good donar vessel was found and surgery scheduled. Well I made it thanks to Dr.Rasmussen and his team at the Clinic
Larry <ljr19183@zoominternet.net>
Autintown, OH USA
Friday, July 02, 2010 at 10:10:46 (EDT)

Thank you for taking the time to reach out and bring Moyamoya famililes together! You are a blessing and the site is filled with rich information and great encouragement!
Amy Pickett <colossians3@N2jesus.com>
Providence Forge, va USA
Saturday, June 26, 2010 at 22:57:40 (EDT)

I am a 56 yr old male who was diagnosed this Spring with Moyymoya. My family Dr. had been treating me for the last 10 yrs. or so for migraine headaches. It was after I took a drug called Relpax for a migraine in Nov. that I had a bad reaction that my Dr. scheduled an MRI/MRA . The results came back abnormal. No blood flow to right side of brain and limited to left side. I was sent to local neurologist and he could not understand how I was walking or talking. He ordered a CT scan with dye which showed same results. My Dr. was amazed and said I had better go to Cleveland Clinic for further tests and evaluations. It was there I first heard the term Moyamoya and learned about the tiny collaterall arteries and found out I was not having migraines but TIA's. I was seen by Dr. Rasmussen at the Clinic and had a SPECT test done along with an angigram of my brain. I had revascularization surgery on 6-17 and was snt home on 6-20. I still have some head pain and can't wear my glasses as my new artery passes along side my ear and puts pressure on it. I am very tired and weak but was told that can be expected after 8 hrs. of surgery
Lawrence Roth <ljr19183@zoominternet.net>
Austintown, OH USA
Friday, June 25, 2010 at 13:57:47 (EDT)

We live half way across the world in New Zealand and have a todler that was diagnosed with MM. I wondered if anyone could let us know of any doctors that you know in Australia specialising with this disease as this may be the closest to us. Most of the specialist are in the States and we cant afford to go that far because of the huge medical expenses. Any help would be greatly appreciated
Lina <glory7x@yahoo.co.nz>
New Zealand
Wednesday, June 23, 2010 at 05:21:19 (EDT)

A patient in my hospital is diagnosed with this disease.i need more information and the help if any it can provide.
Abdul Ahad <ahad4u84@yahoo.co.in>
Lucknow, Uttar Pradesh India
Saturday, June 19, 2010 at 07:16:10 (EDT)

I am the proud husband and father of a wife and son with MoyaMoya disease, both of whom have had corrective surgeries and doing very well.Thanks to Albany Medical Center's Neurosurgery Unit. Thank You, John Voorhis
john voorhis <jvoorhis@rocketmail.com>
gansevoort, ny USA
Sunday, June 13, 2010 at 21:18:15 (EDT)

howdy, I'm a 38 yr old female who has moyamoya. My mom died at the age of 52 with aneurysms and extreme high blood pressure,my aunt was 64 and died 2 mo ago from this disease. It definately runs in our family.Doc said we don't knoiw why you have it,you don't even have the gene. so anyway, I had surgery 9 mo ago, and still have droopy right side of face, and my right side feels weak, I get dizzy alot and am having to ,leave my very part time job,because it's too much for me . Yet, the docs say oh your fine we think you can workwithout problem anyone else have this scenerio after surgery? I tried for disability but they denied me.
kthleen <gcseto@hotmail.com>
pearland , tx USA
Tuesday, June 08, 2010 at 02:08:13 (EDT)

Hi, my son has his first stoke in june 2009. Second one, 2 months later in august 09, anonther in december 09 so they decided to do a surgery edas both side. In january2010 the right side was a sucess. In febuary he had a stoke post-surgery. So now he his 22 months age, he often seem to have pain somewhere. They find out he has hypertension too. He has often part of his body red and hot (leg,arm or ears) He doesn't walk,doesn't talk and has hemiparesie in both side. He takes drugs every day: aspirin 80mg, frisium, sibellium, and norvasc (for hypertension). His hypertension is not controled yet. I would like to know how you feel with moyamoya, you have headaches, and what more. Please help me to understand my boy. Thanks you.
Sonia <soniatrottier@hotmail.com>
montréal, qc canada
Saturday, June 05, 2010 at 21:50:27 (EDT)

My 8 year old granddaughter just had surgery at Boaton Children's Hospital. They told us to expect TIA's and headaches until the vessels establish themselves. This has already happened. Can anyone tell us what they have experienced?
Diane Fiorentino <dgf847@aol.com>
coram, ny USA
Friday, June 04, 2010 at 21:46:31 (EDT)

Hello, I have MoyaMoya. When I was 4 I had woken up for breakfast and was drooping on the left side. It was discovered that I had a stroke. I was in the hospital for about two weeks. I had been on medicine for siesures, which didn't really help, until the age of 12. Then when I was about 24 years old I started having tingling in the face, I went to Urgent Care. The Dr said it was due to stress and gave me some sleeping pills. I talked to my Chiropractor that same week and he got me in to a nuerologist the next day! It turned out that after a couple weeks of MRI's and examinations that I too have MoyaMoya. Twelve years later I am still taking a lowdose Asprin every day, and have not had a sign of TIA's. I would like to thank my Chiropractor for "saving" my life. I too had the suggestion made to me about the surgery to do reroute the blood vessals in my head. But due to the grace of God my body found a way to do it itself. Now I am 35 years old and have a beautiful 2 yr old little boy. I pray every day that he won't end up like his mommy.
Melissa E. <thehuskyranch@frontiernet.net>
Blooming Prairie, MN USA
Wednesday, May 26, 2010 at 09:06:47 (EDT)

I think I have this disease. I have not been fully diagnosed yet. I am a 40 year old white female who had a subarracnoid ruptured aneurysm in 08/08. 9 months later I started having left sided what the docs called "spacticity" and now my angiograms show a completely occluded right carotid. It was not that way when the aneurysm ruptured so they tell me. I have poor balance on the left side now and I am afraid to have another surgery.
Christina <cmbresnan@aol.com>
Woodstock, Ga USA
Friday, May 14, 2010 at 22:24:22 (EDT)

hello my name is sabrina and our family and myself just found out on april 14th our 8 year old son carrington was diagnosed with moya moya. We found out this dignoses when he went into the hospitol to have his tonsils removed. He had complications and had to go back into surgery. He had 3 mini strokes 3 days later. He had a series of test done and show's he's a stage 4 on the right side of his brain and a stage 3 on the left side of his brain. He is going into surgery in 10-14 days. This has been a scary time since we found out this diagnoses as you already know. Any parents out there who can give advice it would be wonderful. We are still not familiar with moya moya but are trying our best to research and find out information on parents and children who have gone through or may be still going through moya moya. Our family has been very supportive but we need everyone's prayers as well as we will be giving to all of you. Thank you.
sabrina <stephaniemom1969@yahoo.com>
nashville , TN USA
Friday, May 14, 2010 at 20:09:14 (EDT)

Hello everyone. Two days ago we had never dreamed that our life would be turned upside down because of Moya Moya syndrome. We had never heard of the disease. In Denmark, where we live, there is only one case of Moya Moya. Our fourteen year old son was diagnosed with Moya Moya Tuesday, May 11, 2010. He had a brain haemorrhage in September 2009. He did not suffer brain damage. But it was a very hard experience to have a healthy son who suddenly became so ill. It came as a thunderbolt from a clear sky when he became ill. No warnings came before he became ill. Our lives are devastated by our son was diagnosed with Moya Moya. Even worse is that our fifteen year old daughter has been different compared to other children since she was born. My wife has always believed that she has a low degree of autism. She was diagnosed with APD last summer and is epileptic. After our son was diagnosed with Moya Moya, we were very afraid that our daughter might also have Moya Moya. We hope we are wrong and she did not suffer from Moya Moya, We do not know what to do if she is hit by the disease. It would be terrible to have two children with Moya Moya syndrome. Our thoughts are with you all who have this disease. With Best Regards Dan & Amalie Riis from Aalborg in Denmark
Dan & Amalie Riis <danogamalieriis@gmail.com>
Aalborg, Denmark
Thursday, May 13, 2010 at 15:24:11 (EDT)

Hi my name is Lisa and I have moya moya my question i have horrible headaches and i was curios does anyone else suffer from headaches to what is being done to treat the headaches
lisa presto <lspresto@yahoo.com>
bethel park, pa USA
Monday, May 10, 2010 at 19:15:01 (EDT)

Hello, My grandaughter Carleigh was diagnosed with Moyamoya at the age of 5 months in 2007. She had her 1st surgery at 6months and her 2nd at 9 months on the other side of her brain. She has alot of damage due to the fact that she had 3 strokes prior to surgery. Carleigh is a true blessing to our family, God has answered many prayers and continues to do so. She has just been diagnosed with Vasculitis also.We have been told this is also very rare in children. Her doctor's at Children's Medical Center in Augusta, Ga. have only seen 1 other child with Vasculitis. They are researching and consulting with dr's elsewhere to determine treatment. Would love to hear from anyone with a child with both disease's. You can follow Carleigh on her caringbridge site @ caringbridge.org visit:carleighoconnor.Thank you for this site.It's great!!
Pam Rayburn <prayburn7557@yahoo.com>
Augusta, Ga USA
Saturday, May 08, 2010 at 12:57:06 (EDT)

Hi my name is yeni wolfe and my 1 year old daughter kalisa wolfe was diagnosed with moya moya disease just yesterday, is good to know that there are more people out there with this disease
Yeni Wolfe <wym25@live.ca>
regina, sk canada
Thursday, May 06, 2010 at 00:30:09 (EDT)

hi i have moya moya and would like to talk to other people w/ it thanks
roberta galka <nascarlady24@comcast.net>
hudson, ma USA
Tuesday, May 04, 2010 at 20:28:18 (EDT)

In December 2009 my three year old daughter was diagnosed with Moyamoya. We discovered at this time that she had a series of strokes and that led us to our first hospitalization for 18 days. Since then, she has been in the hospital for 1 week in January. We checked in to the Childrens hospital for her EDAS surgery of the left side of the brain on February 12 and as of May 2 we are still in the hospital. She has suffered one massive stroke that happened shortly after the surgery and just suffered another one this week. It is sad and frustrating and discouraging and I feel helpless to be able to do anything. Is there anyone else out there that has had it to this degree and any encouragment that can be offered? Help!!
Leslie Shafer
Motley, MN USA
Sunday, May 02, 2010 at 23:45:39 (EDT)

What an amazing story! I am so glad you were your best advocate and you found out what was wrong. I ran across your article. I was diagnosed with essential tremors but lately my fingertips go numb at the same exact time in both arms and it's starting not to go away as fast as it normally does. I also suffer from a leaky heart valve. I'm on several meds for it already. Just had a good check up with my cardio. I also have a neuro but haven't checked in with him recently. When I get the shakes bad I feel like I'm losing my balance and then this new tingling sensation in my finger tips is bizarre it happens exactly equally in both hands at the same time? Your story was fascinating to me.
Liza Armstrong <harley.1295@yahoo.com>
Littleton, Co USA
Wednesday, April 28, 2010 at 01:36:27 (EDT)

I am 37 and had a stroke Dec.5/09 since then I have been told I have MoyaMoya. I had an angiogram done yesterday, (I am abit sore today). I am waiting to talk over the results with Dr.Lownie next week. All the testing has been a little overwhelming but, should be done soon.
Bonnie <bnngale@yahoo.ca>
Stratford, Canada
Friday, April 16, 2010 at 19:01:46 (EDT)

I had a mild strke last February 6, from thn on I went to Toronto Rehabilitation Institute for various therapies to get back some functions in my left leg and left hand, I'm doing ok. I had another MRI last March 1, and it showed there that my vessels aren't able to dilate anymore, I am scheduled for an EC-IC bypass surgery on April 20th. I am positive about the outcome of tis surgery. it is for stroke prevention, I was told by Dr. Michael Tymianski, he's the expert on this disease here in Toronto.
Vivian RoseBcorro <vivrosebacorro@yahoo.com>
Toronto, ON Canada
Thursday, April 15, 2010 at 18:49:29 (EDT)

Hi its Vickie 46 mother of two from Melbourne FL. My last post was Feb 23. I'm 23 months post surgery (ECIC and right temple by-pass). Things are great no change since May 2008! I am staying strong thanks Dr Unger from Melbourne Fl and DR Hanel from the Mayo Clininc in Jacksonville FL they are great!!! I completed my first 1/2 Marathon March 7 2010 in Orlando Fl at Walt Disney world! I have also completed 2-5k 3 mile and 1-8k 5 mile run. So there is hope! Please keep your heads up, things do get better! My two Sisters-Valerie(twin)and Michele, two Nieces Krista and Amanda also ran with me. we were wearing Blue Ribbons with MOYAMOYA written on them for the Awareness of MOYAMOYA! God Bless each and everyone with this disease and your families.
Vickie Anthony <vickieanthony@yahoo.com>
Melbourne, fl USA
Thursday, April 15, 2010 at 17:49:41 (EDT)

Hello all my good freind had a massive stroke last week and they did a test yesterday and said it was Moyamoya. He is 54 yrs old and he had some brain damage. they did a cat scan today so they can replace his cap tomorrow. He can not communicate except for moving his eyebrows. They are going to tranfer him to a rehab hospital but the Doctor does not believe he will walk again or if he is even a candidate for this surgery. His wife as you all can imagine is devistated so I found this site to have her get in contact with people who have experienced this type of illness. I f anyone has some advice for us that I can pass on to his wife would be appriciated.
Kevin Mackey <mackeyk2000@roadrunner.com>
hIGHLAND, cA USA
Wednesday, April 14, 2010 at 00:24:57 (EDT)

I have been googling the www and I am shocked by how few organizational support groups are out there for family and Moyamoya patients. Is there a group in SC or on FL? I found a multitude of groups and organizations for almost every other rare disease but not for Moyamoya. Any help would be appreciated.
Marie <threeangelsms@gmail.com>
West Palm Beach, FL USA
Friday, March 26, 2010 at 20:22:56 (EDT)

Hey, i was diagnosed with this disease but failed to take the medication as it made me doped up and retarded feeling. well, i had a small seizure and now I'm taking my condition very seriously as i have a one and half y/old daughter. It's just frustrating because i still have painfull headaches and just now my fiance realized i can't take too much stress on. I hope i don't get too overwhelmed with further research as i do in worrying it doesn't get passed to my daughter or any of her kids......
Carla <carlae1433@yahoo.com>
st.helens, or USA
Friday, March 26, 2010 at 00:15:48 (EDT)

I have a great friend who is going through intense testing at this time with a probable diagnosis of Moyamoya. Thanks for this website and all of the great information here regarding this disease. It has all been very helpful.
Lindsay Bridges <lindsayebridges@yahoo.com>
Guntersville, AL USA
Monday, March 15, 2010 at 22:53:43 (EDT)

Hello. my son jemile had a stroke on Dec. 28/2009 that when we found out he have moyamoya. He is 25 year old black man from Georgia. he now have to undergo two sugeries.we need your support in understand more about moyamoya. thanks. may God be with us!
judy richards <judyrichards20@comcast.net>
cartersville, Ga. USA
Wednesday, March 10, 2010 at 14:32:06 (EST)

just found out about my condtion am 45 and doctors stated they would just observe me with medication. woundering if that is a good idea, having headaches and dizzingness weakness in left side walk like am drunk. dont have good coordination and cannot remember how to spell simple words vision is blurr. what should i do?
kim <cardrichekim@yahoo.com>
little rock, ar USA
Wednesday, March 10, 2010 at 00:59:26 (EST)

Just had a stroke and was diagnozed with moya moya. I am very scared about surgery. I am only 53 years old.
Maureen Manzano=Perez <maureenmanzano@att.net>
Fresno, Ca USA
Tuesday, March 09, 2010 at 12:32:12 (EST)

i was diagnosed with moya moya disease at the age of ten i was only 8 1/2 when i had my first right priotal stroke and i had one of the to neuroloists dr.brucecohen he has over 80 patients with my disease. but he's only a pedeatric neurologists he tried to keep me as long as he could but after i hit twenty one he was only able to keep me for 2 more years he is at the cleveland clinic.
katherine
weirton, wv USA
Friday, March 05, 2010 at 09:47:09 (EST)

My daughter was diagnose with mayomayo in 1991. She had 2 seizure and stroke at 7 and 13 months. Doing the time she was diagnose with mayomayo there was only ten kids that had it. Out of those ten she was the only one that didn't have sickle cell. Her speech and her left side was effect. We ask about surgery but the doctor said surgery would be harmful to her. She was put on medication to control the seizure and blood thinner. Years went by she was taking off the medication and was doing well, until she reach 15. We started to notice shortness of breath, was referred to several doctors and was told the same by all she just needed to walk more. I ask about her seeing a heart specialist, we went to the appointment and that's when we discover she had pulmonary hytertension that was causing the shortness of breath. She was put on oxygen and 5 different medicine. Everything was ok she didn't have the shortness of breath due to the oxygen and medicine. The medicine work good one year to the date she started taking it. She lost her battle at 16 years of age do to a massive stroke.
Pamela <ptm37@yahoo.com>
atlanta, ga USA
Thursday, March 04, 2010 at 16:06:29 (EST)

I sufferred a mild stroke last February 6, afternumerous MRIs and CAT scans thats when I learned that I have moyamoya disease, it actually caused my stroke. I say mild because i didn't need a surgery after the stroke.
Vivian Rose bacorro <vivrosebacorro@yahoo.com>
Toronto, ON Canada
Wednesday, March 03, 2010 at 16:14:57 (EST)

I just found out my sister has this disease and is a walking time bomb. I need help trying to help her any ideas?
racheal sorensen <rach_dale@live.com>
holland, mn USA
Monday, March 01, 2010 at 23:17:50 (EST)

Hi, my name is Asra Jawaid. I'm a 28-year-old female of Pakistani descent living in Miami, Florida. I was diagnosed with moya-moya 14 years ago, but only after suffering a serious brain hemmorrhage which kept me in a coma for nearly 3 weeks. A now-retired neurosurgeon performed an EDAS on my head a few months later, but I still "suffer" from some setbacks incurred because of my stroke. (poor short-term memory, diplopic vision when I look to my right; a disorganized lifestyle, a limping gait; difficulty in sequencing) Has anyone visiting this site heard of a "club" called Families with Moya-moya? It's based in Cedar Rapids, IA. I've called and written to them but haven't received a response.
Asra <Asra23@bellsouth.net>
Coral Gables, FL USA
Thursday, February 25, 2010 at 21:45:15 (EST)

Hi its Vickie 46 mother of two from Melbourne FL. My last post was Jan 12,2009. I'm 21 months post surgery (ECIC and right temple by-pass). Things are great no change since May 2008! I am staying strong thanks Dr Unger from Melbourne and DR Hanel from the Mayo Clininc in Jacksonville FL they are great!!! My 1/2 Marathon is next weekend March 5-7 in Orlando Fl at Walt Disney world! I have completed 2-5k 3 mile and 1-8k 5 mile run. So there is hope! Please keep your heads up, things do get better! My three Sisters-Valerie, Michele and Robyn and 2 Nieces, Krista, Amanda will be running in the 1/2 Marathon with me wearing Blue Ribbons with MOYAMOYA written on them for the Awareness of MOYAMOYA! I also have 2 more Nieces, Paige and Payton running in a 5K wearing the same Blue Ribbons for our disease!! So wish us Luck!! God Bless each and everyone with this disease and your families.
Vickie Anthony <vickieanthony@yahoo.com>
melbourne, Fl USA
Tuesday, February 23, 2010 at 20:07:29 (EST)

Hi. my husband George was diagnosed with MM in 1981 at the age of 25 following 2 strokes in 18 months. We lived with moya moya for the next 20 years until his death age 42. During his life he had many strokes but when he was in his 20's we requested genetic help and were informed that moya moya was rare and to go ahead and have children. We have 2 boys and to cut a long story short they both have moya moya presenting as teenagers. My oldest son is 25 and has lost all sight to his left (not a problem with his eyes just the brain) the youngest son is 23 and has epilepsy following a left sided stroke. MRI has shown they both have occluded carotid arteries with only blood supply to the rear of the brain. As you can imagine I have spent many years trying to understand why them?.. I have done intensive family history research and have concluded that my husband's mother carried a defective gene and she had 2 brothers who died early 40's with stroke. We have a 4 yr old grandson who we are watching closely. When we need to deal with an 'event' as we have come to call the stroke activity we still have a problem with the medical profession understanding that young adults/children can have a stroke. I now know my eldest son first presented at age 3 when he stopped walking but the hospital said it was his shoes. He did walk again within 12 months. We are in the UK and have so far been advised not to go for surgical intervention. Keep taking the medicine. Good luck everyone. eve
Eve
USA
Monday, February 22, 2010 at 16:02:28 (EST)

I'm starting to think MoyaMoya isn't so rare after all. So many people being diagnosed everyday.Im a 32 year old black female who was dx last year. A year post surgery and doing well. Keep faith in GOD! He has the final say!
paris brown <paris29sc@yahoo.com>
columbia, sc USA
Monday, February 22, 2010 at 14:01:02 (EST)

Hello all. I am a 36 year old black female dx with mm 11/2009. I had never heard of the disease. I have the sickle trait and all my life I was told as long as u have the trait and not sickle cell disease it was nothing to worry about. WRONG! My sickle cell trait is what caused me to have mm. In 10/2009 I had a tia. I had been having ha for 6 months and no one could figure out why. After my tia I was dx with mm. I have been in the hospital 3 times in the last 3 months. I had a stent put in my brain on 12/19/2009. I still experience ha every day. My left hand is affected from my tia. I found out that I had many tia's and never knew it. MM is a scary disease. I don't know what my future holds but I do know that if continue to pray for each other our faith can only make us stronger. Thanks for reading.
Shay Phillip <tyree_phillip@yahoo.com>
Omaha, Ne USA
Thursday, February 18, 2010 at 10:30:02 (EST)

My daughter is Mechelle and she is 6 years old. I have written on here previously but to recap, Mechelle had a seizure in April 2009 and over the past months has had MRIs and MRAs and an Angiogram. She is scheduled for surgery on Wed., Feb. 17 for her right side. She has had no other seizures and her headaches have decreased and her last MRI showed no signs of change. She is not on medication and I wonder if we are doing the right thing. Since this is so rare, how do the doctors know that surgery is the only way? Dr. Jeffery Leonard from St. Louis Children's Hospital in Missouri will be performing the surgery and he has admitted to only performing 10 surgeries dealing with MoyaMoya all of which he says has been successful. What can I expect after surgery? Will this be the first surgery of many or will this fix the problem? How will this surgery affect her physically, mentally and emotionally?
Mendi Enloe <m.enloe@yahoo.com>
St. Clair, MO USA
Thursday, February 11, 2010 at 19:14:45 (EST)

My daughter was just told she has Moya Moya, she is 19 years old. She has a stroke Dec.2,2009 with many mini strokes. Have been reading alot. Am trying to find as much information as possible.
denised <denised1963@hotmail.com>
pgh, pa USA
Tuesday, January 26, 2010 at 22:28:26 (EST)

Hi, my name is Debby. I just recently found this website. In 1985, at the age of 12, my son suffered a stroke and was diagnosed with MoyaMoya. He is now 36 years old. In 1985 rehab centers were not readily available. After his discharge from the hospital, a month long stay, he was sent home with us. PT was done at a local hospital and speech therapy was done in our home. His speech was the last thing to return. He still has short term memory problems, foot drop, right sided visual problems and no use of his right hand. He has been employed for 15 years at a local factory, although some of his experiences there have been rough. He lacks self esteem and all encouragment would be greatly appreciated. Thanks for the opportunity to reach out to someone else who has been through this.
Debby <dsherman@hardynet.com>
Moorefield, WV USA
Sunday, January 24, 2010 at 22:08:09 (EST)

Thank you for the support I have recieved from this site. It has been a God send. Tony is now dead and gone to Heaven.It has been a very long month. Tony Sanchez started out with a stroke a month ago when he recieved his diagnosis of moya moya at ago 30, They did surgery on him and relieved the pressure and he was up walking and talking. He was sent to a larger hospital for more surgeries where he had a massive hemmorhage. major brain surgery to stop the bleeding ( they couldn't stop it) They told us no one had ever survived this kind of injury to the brain. he basically had no brain left and they had placed him of life support. He lived 5 days on life support until the family pulled the plug and he breathed for approx, 10 hours on his own when they disconnected him.
EMILY EVERINGHAM <LEMONY45@COMCAST.NET>
TAVARES , FLA USA
Saturday, January 23, 2010 at 06:19:13 (EST)

hi, my name is kat and i'm 26, my symptoms started at 22 and they were finally recognised when i was 23. my consultant is mr christos tolias from the kings college hospital-london, i've had a right sided sta-mca bypass in march 2008 and left edas january 2009, that doesn't include all the tests and investigations i have received. All is looking good for now but i do worry that my son gets it but either way i hope he will receive the great attention and care that i received. God bless to all that have/will encounter this scary disease
kathleen english <noangel@in.com>
rochester, kent Uk
Tuesday, January 19, 2010 at 06:27:47 (EST)

I am writing to tell you about my friend Tony Sanchez Massa. He is 30 years old and in the hospital; he has moya moya. 2 weeks ago he had a migraine, a collapse, a stroke, a loss of speech, blindness and left sided parlysis. Since then he has been airifted to a regional hospital, had three brain surgeries and the implantation of 2 stents with good results. He can see, talk coherently, knows us, and the numbness on his left side is gone. The surgeon says he has 6-8 months of rehab ahead of him but "he should be fine". Some how I don't think so. I think there are more surgeries down the line. This disease is so rare. The local dr. said "well, son, you've had a stroke and I don't know why you aren't dead." He had 2 more before they sent the info to a neuro surgeon at the regional hospital who airlifted him inside of 20 minutes. i learned a great deal by just typing moya moya disease into my computer. there is a lot of infomation about diagnosis but not a lot on prgnosis. we just don't know what's coming or what to expect. Can anyone tell us? Thanks for listening. I will include all ofyou in my prayers for Tony.
EMILY EVERINGHAM <LEMONY45@COMCAST.NET>
TAVARES, FLA USA
Friday, January 15, 2010 at 22:06:23 (EST)

Well hello to everyone who visits this page. Thank you for the e-mails of support and info. Hayley our 10 yr. old daughter had her angiogram on Thursday Jan. 7th. and a Pial synangiosis on the right side and lay on on the left side. Hayley spent one night in ICU and then had her own room until Monday afternoon. Then they sent her home with us. How awesome. She is improving constantly. Feel free to e-mail us if anybody has any questions. We would love to tell our story in depth and help others as much as possible. Thanks, Jeff and Kelly Jones
Jeff and Kelly Jones <spurtwo@msn.com>
Evanston, WY USA
Thursday, January 14, 2010 at 12:45:55 (EST)

I was hoping that someone might have information about whether moyamoya can be hereditary. My husband and his sister both are afflicted with this. Both had a type of surgery, but not the same type. My husband still had TIAs after his surgery and dropped our daughter in 2007. She landed on her head and for some reason didn't survive. I also know she had weird reactions to her vaccines. I am desperate for answers and the few doctors who've answered me tell me that at 5 months a baby is too young to know if she had Moyamoya. Please contact me if you find out anything about hereditary potentials of this disease. My husband was accused of murdering our child because her doctors didn't test for differentials and I know they had no clue she was part Japanese and her father has Moyamoya so does her aunt. If anyone knows anything I hope you will contact me.
Tonya <info@theamandatruthproject.com>
OH USA
Wednesday, January 13, 2010 at 20:53:07 (EST)

hi i am the mother of a 14 year old girl named charley. i have went to hell and back with her having moya-moya. charley is doing well since her opaeration. she's not 100% yet but getting there. lots of meds needed.charley will never ride a bike dance or jump,skip or run, but i thank the lord that she is here with us. i wish everyone with moya-moya all the best. I know what you are going threw. to evryone god bless. karen.
karen harris <kshaeskisses@yahoo.com>
watertown, ny USA
Wednesday, January 13, 2010 at 15:02:22 (EST)

hi i am the mother of a 14 year old girl named charley. i have went to hell and back with her having moya-moya. charley is doing well since her opaeration. she's not 100% yet but getting there. lots of meds needed.charley will never ride a bike dance or jump,skip or run, but i thank the lord that she is here with us. i wish everyone with moya-moya all the best. I know what you are going threw. to evryone god bless. karen.
karen harris <kshaeskisses@yahoo.com>
watertown, ny USA
Wednesday, January 13, 2010 at 14:58:55 (EST)

Hi its Vickie mother of two from Melbourne FL. My last post was Sept 22,2009. I'm 19 months post surgery (ECIC and right temple by-pass). Things are great no change since May 2008! I am staying strong thanks Dr Unger from Melbourne and DR Hanel from the Mayo Clininc in Jacksonville FL they are great!!! I am Training to run in 1/2 Marathon March 5-7 in Orlando Fl at Walt Disney world! So there is hope! Please keep your heads up, things do get better! I have never run in a race before, This weekend is my first 5k. run wish me luck! God be with everyone with this disease and your families! Take care!
Vickie Anthony <vickieanthony@yahoo.com>
melbourne, fl USA
Tuesday, January 12, 2010 at 19:37:54 (EST)

I was diagnose with moya moya 7 years ago. Now I'm 47 and still not 100% back the way I was before.
Jeannette Mukhar <jeannettemukhar@aol.com>
Redwood City, CA USA
Tuesday, January 12, 2010 at 19:23:36 (EST)

I was diagnosed with moyamoya post stroke in February 2008 at 34 years old. My first EDAS was in August of 2008 and my other side was done in June of 2009. Although I have almost no deficits from strokes the mental part is ever present.
Nick Christopher <nickc952@yahoo.com>
Toms River, NJ USA
Monday, January 11, 2010 at 09:49:10 (EST)

Hi, Our daughter was diagnosed with moya moya on Dec. 18,2009. She actually has never shown any symptoms other than a headache. Hayley has already had an MRI. She had a second one on the 21st. I'm thinking they want to do surgery on Jan. 7th. @ Primary Childrens in Salt Lake City,Ut. We have ins. but don't know how much they'll cover. I may have forgot to mention that Hayley is 10. After people go through this operation is the prognosis good? If someone could let us know. Worried in WY.
Jeff and Kelly Jones <spurtwo@msn.com>
Evanston, Wy USA
Tuesday, December 22, 2009 at 10:15:02 (EST)

I just found out right before halloween this yr my oldest son Tyler(14YRS OLD) had a stroke due to this moyamoya since the age of 8 he has complained of right sided numbness and since 10 yrs old he has been treated for tuberousclerosis with anti-seizure meds does anyone out there have a simular situation? what i am wondering and he is too is if he will ever come off the meds ?
kim bourne <kim_reynolds2000@yahoo.com>
McKenzie, TN USA
Tuesday, December 22, 2009 at 03:35:17 (EST)

Hey our daughter was diagnosed with MOYAMOYA just this Friday. She was diagnosed at the University of Utah after an MRI. Hayley has never shown any symptoms of this condition.Hayley is 10 years old. When they told us they said it was a disease found mostly in Asians. I've been reading some of the entries on this page and I see alot of people having multiple surgeries. I don't know much about it. Do people need to have multiple surgeries? They only found this after a CT to look at her nasal passages.Are the operations usually pretty successful. Do people go on to to live normal productive lives? Thanks for your time. Worried parents in Wyoming
Jeff and Kelly Jones <spurtwo@msn.com>
Evanston, wy USA
Sunday, December 20, 2009 at 19:47:32 (EST)

I am 50 years old. I just recently had a TIA. When I went to the ER they did a CAT scan and 2 MRI's. They said that I have Moya Moya and had a previous stroke. I do recall being told 10 years ago I had MoyaMoya but did think anything of it. That's where the Nueurologolist left it. So I started my own research and now I am really concerned. I do have an appointment in 2 weeks. How should concern should I be?
Russ Huekler <huekler@hotmail.com>
St. Pete , FL USA
Wednesday, December 09, 2009 at 10:39:49 (EST)

I am looking to get information on Moya Moya and hoping that someone has some answers for my husband and myself. My 35 year old husband was diagnosed with Moya Moya over 2 years ago and has had two surgeries to correct this blood flow and to stop the strokes and seizers he had been experiencing. He would get numbness in his left had and would loose ability to stand when he would have a stroke. During that time he would have a glazed look in his eyes and would not be able to communicate to others. This would take a minute or less to pass. He would get very bad headaches and would have stomach problems as well as having blood flow to all parts of his body. Being a guy that would affect him in a way that he could not perform. This has been a very confusing time for my husband and I as we had no idea what was wrong with him. I gave my husband an altamatom to go and find out what was wrong with him. At this time we were just dating and not knowing what was wrong with him. My friends and family were concerned and had asked what was wrong with him. I was afraid that his family might think that I had done something to him to cause this to happen to him. It was the final eye opener when an ex co-worker say him drop to the ground and not able to communicate to him. They took him to the hospital and a series of test were done. It was a cat-scan that confirmed the Moya Moya. A few months later he was having his first surgery to start to correct this problem. Then 7 months after his first surgery he has his second surgery. Since having both he has improved so much and I thank Dr. Garnet Sutherland at the Calgary Foothill Hospital for saving his life. He is an amazing surgeon. My husband has never has to take any medicine for his Moya Moya. He occationally gets headaches but I don't believe anything like what he use to have. We would one day like to start a family but we are not sure if he is able to have kids due to the Moya Moya or if we do have a child will this be pasted on to them. We have met with a lot of doctors and none of them can confirm this with us. This is such a rare condition that no one seems to have any answers. When we first found out about Moya Moya we tried to find out more info about this condition and we found nothing other than what we were already told. We were told that it is mostly found in Asian Men. Now it looks like anyone can get this. We were told that if we wanted more info we would have to go to Japan to get more info. Now it seems that things are now coming out in the open and more people are knowing more about this. What I would like to know is if anyone know if this can be pasted on to kids or what? If you have any questions or would like to know more about this, please feel free to contact me.
Catherine Kalivoda <kittcatt@shaw.ca>
Calgary, AB Canada
Tuesday, December 08, 2009 at 19:44:39 (EST)

Hello my name is Tom and I am a 35 year old man who was diagnosed with Moya Moya about two years ago and have now had two surgeries to correct this. Thanks to Doctor Garrnet Sutherland at the Calgary Foothills Hospital who performed my two surgeries and saved my life. I think this website is a great idea. When I was first diagnosed with Moya Moya, I searched the internet and found nothing. What I finally did find indicated that the sydrome was found mostly in Asian Men and young children. Now to my surprise studies show that this is more common for women to have rather than men and children. How I first found out that I had Moya Moya was I was experiencing numbness in my left leg. There would be times where I would loose my ability to stand and I would have to wait for this to pass which would really take about a minute or two but it felt longer. I was unable to communicate what was happening to me. The Foothills Hospital found out that I had Moya Moya but running a series of test on me. The final test that confirmed Moya Moya was an MRI. That was an answer to my Wife and my prayers that someone finally knew what was wrong with me and could finally help and let me live a normal life again. If you have any questions or would like to know more infomation please feel free to contact me and I would be more than happy to give you what information I know about this syndrome.
Thomas Kalivoda <tkal74@yahoo.ca>
Calgary, AB Canada
Monday, December 07, 2009 at 23:46:17 (EST)

I was 25 when I was diagnosed with moymoya in 2005 after suffering a small brain hemorrhage. During that time I experienced loss of feeling and tingling on my entire right side and slurred speech. I had headaches but they were pretty minimal. Since my diagnosis I've been very blessed to say that I haven't had many complications with my moyamoya. Because of the rareness of this disease I was having to travel to the Medical College of GA to receive treatment. Recently my local neurologist informed me of a new doctor who worked with adult moyamoya patients at the Medical University of SC. This neurosurgeon ran new tests to see how far I've come since my initial diagnosis four years ago. He informed me that although I've been asymptomatic, the disease has progressed, the arteries on my left side are narrowing greater than the right and he recommends that I undergo the ECIC bypass surgery on my left side. In my case the surgery is a preventative measure to give my brain time to prepare in case something should happen later on. I don't know what to do. It's a very difficult decision to make. Continue as I've been going? I've been fine so far. Or have the surgery? I've read your stories. I know what can happen. I wish I knew what to do. You all inspire me with your courage and bravery as you face the many unknown variables of our disease. God bless.
Jessica <jacabiad@gmail.com>
Charleston, SC USA
Monday, December 07, 2009 at 01:22:49 (EST)

I am a 22 year old white female diganosed with moyamoya only 2 weeks ago. (scared shitless). i was diagnosed after a long process of haveing headaches lastibg for months at a time and being told that i was only having migraines.. ( yea ok ) so i was very presitant that something more was wrong . Finally something that happend that made the doctors look a little harder. my nurologist sent me for an mri mra and mrv which showed that i had narowing on both sides of my brain in my arterys. i was sent imediatly to albany to the er only to be sent home hours later . about a week went by and i was felling worse and started to have stroke like symptoms and was admitted to the hospital for three days and the released and told i had a stroke nothing permanant happend .. thank the lord ! but my mom was researching all of the different things they told me i COULD have and found dr stineberg and had me send my films to him and now i have the diganosis of moyamoya deisease. i am flying out to califonia on dec 9th and am having to direct and indirect bypass sugerys the first on dec 22nd and the second Jan 5th. unfotunaly i will be missing chrismas with my two yearold daughter but i need to have these sugerys inoreder to care for her. soo wish me luck !
Rachel; Jurkowski <Rjurkowski2@hvc.rr.com>
Saugerties , ny USA
Friday, November 20, 2009 at 14:39:19 (EST)

Hi, I wrote on this page on september 23, and I would like to thank people that gave me answers and advices. Now, I'm waiting for an second opinion, I choose Dr.Scott from Boston. My son is now 15 month age, he seem to feel good; play,smile and eat well. However during the nignt is very difficult, I may get up 20 times to reconfort him. I think he hate to be on the back....My son doesn't talk so he cannot tell me what' wrong. I really would like to know how feel a person with moyamoya. You have headaches ....tell me more. It could help me to understand my boy. Thank you.
Sonia <soniatrottier@hotmail.com>
Montréal, Qc Canada
Thursday, November 19, 2009 at 15:32:03 (EST)

I have living with moya moya for 3 Years now. I still really bad headaches. every other day i take vicaden and that dont work any suggesion i see my surgueron tomorrow thanks for listinsting nanci.
Nanci Dallas <rocco1@comcast.net>
Hobart, IN USA
Wednesday, November 18, 2009 at 15:51:04 (EST)

I have a 13 year old daughter that is suffering from moyamoya. I do not think the people in our life really understand what we are going threw and how hard it is. I'm a single mother and I have end stage kidney failure. It gets really over whelming for me, but I'm all my little sun shine has. The strokes and operation and the long hospital stay's makes my head weep and my eyes fill with tears. It's been one year but I could not even afford to return her back to her neurosurgen for her follow up in California. I wounder just how many family's in wisconsin have children going threw this. Thank you.
Denise Fuller <poopookittyhoney@yahoo.com>
Milwaukee, WI USA
Tuesday, November 17, 2009 at 01:00:45 (EST)

Its been almost a year since being diagnosed with moya moya disease it was found when i had a stroke i was 20 at the time. i had my first surgery in march and have been put off for my second and i still have constant headaches and multiple signs and symptoms of mini strokes... i should be going for a second opinion at John Hopkins and i hope they do my surgery. i am also in the navy so this is gunna end that once treatments done but i am glad i got to join and fight for my country b4 this all happened...
judi boyce <judiboyce@gmail.com>
Silver Spring, md USA
Saturday, November 14, 2009 at 01:43:07 (EST)

I am 40 years old I was diagnosed with Moymoya when I was 35 in 2005, one morning I did not feel well at all. Numb all over in legs, arms and face. I went to Fairfax hospital that is when they diagnosed me with it. I was refered to Johns hopkins hospital. Johns Hopkins said I need surgery on both sides of my head (skull) in my temples. But since at that time I was getting oxygen to my head then if the symptoms ever come back, be sure to come to Johns hopkins Hospital no one else, so far fortunatly I have not had any symptions thank goodness!!! :) Will Report again when the symptoms do come back.
Kelly Johnson <kelkeltic@yahoo.com>
simpsonville, SC USA
Friday, November 13, 2009 at 14:37:12 (EST)

It has been 5 months since my son's last surgery and he is doing fabulous. It's been a while since I posted on here and just wanted to let everyone know that there is light at the end of the tunnel. My (almost) 10 year old boy is now leading a mostly normal life with very few changes ie...no contact sports for obvious reasons. He takes aspirin and medications for headaches, but is otherwise very healthy. They did have to put in a plate on the left side of his head on this last surgery but he's doing great. Just wanted to keep you updated! Thanks Dr Mangano at Cincinnati Childrens!!!
Crystal Sams <csams1@gmail.com>
Hamilton , OH USA
Friday, November 13, 2009 at 12:44:36 (EST)

I was diagnosed with Moya-Moya at 5yrs old after experiencing my first stroke and had two successful bypass surgeries that year on Dec 1st for one side of the brain and Dec 31st for the other. Over the next 7 years I experienced the neurological works. I had multiple strokes, countless petite seizures, 3 grande mal seizures, migraines, weakness, numbness, memory loss, etc. School was a nightmare; trying to learn with a brain that has a severely underdeveloped short term memory was a blast. Thankfully, at 12 years old, my symptoms began to lessen. My neurologist agreed to start weaning me off my medications and by 13 I was symptom free for a whole year! On that birthday I took my last doses of Nimotop and Tegretol. For the last 13years I've remained symptom and medication free with the exception of the occasional migraine, but who doesn't get those. :) I've never shared my story with anyone but a doctor, or ever met anyone with this disorder. I am hoping there is someone out there to bounce conversation off of. I'm at a time in my life where I have some questions and concerns about my future and would like to hear the opinion of someone other than a trained medical professional.
Tara Moyna <magikaluniverse@yahoo.com>
NY USA
Wednesday, November 11, 2009 at 16:58:01 (EST)

My sister Amy was diagnosed with Moya Moya 10 years ago when she had her first stroke. Dr's here treated her with meds and she had continual headaches and weakness but she took it like a trooper. It was not until this year when she got a new neurologist that she had any glimmer of hope for some relief as her sent her to Cleveland Clinic for a consult with Dr Rassmusen and she had her first surgery in Sept. It was not the bypass, but one where they used her chew muscle to help increase blood flow to her brain. She was doing very well in her recovery and her headaches had almost stopped. She was scheduled for the second surgery later this year, but unfortunatly she suffered a major hemmorage and stroke a week ago and passed away. I only wish we would have had a site like this 10 years ago and maybe things for Amy would have been different. Continue to do what you do so that others may be spared the hurt that my family is going through.
Lisa Lucio <mcmom17@yahoo.com>
Ft Wayne, In USA
Monday, November 09, 2009 at 08:38:35 (EST)

My son is now 13 years old at age one and half he was diagnosised with MoyaMoya. He had the pial surgery done by Dr. Scott at Boston's children's hospital. He has very good luck with it. However, now suffers from pulmonay stenosis basically the arties in his lungs are narrowing. They have very little information about it. He has had to have over 40 dilations done. Has anyone had to deal with this?
kara thurlow <nya732000@yahoo.com>
harrison, me USA
Friday, November 06, 2009 at 20:41:12 (EST)

Hi Moyamoya Family.My daughter Neome 4 years old was diagnosed with moyamoya on May 14th. She had surgeries on June 25th and June 30th at Stanford. We went to Stanford, because of this website and I want to thank you all for the help and support. Because of my Little Angel we started a Foundation called www.LittleAngelsInNeed.org. We hope to help lots of families. You can read Neme's story on this website that hopefully will help other families with moyamoya and other childhood diseases as well. Neme's caringbridge site is www.caringbridge.org/visit/holdren. Please email or call us for any questions. Thank You. The Holdren Family
Tunde Holdren <tundeholdren@gmail.com>
Prosper, TX USA
Friday, October 30, 2009 at 09:13:21 (EDT)

Hi I am a 51 year old male who was recently diagnosed with moya-moya and did have a bypass is it necessary for me to have my children tested. I have 3 boys ages 15,20 and 22. None of them have ever had any symptoms but neither did I until this past year when I had a stroke. At this point I'm not sure if this is hereditary or not any help would be greatly appreciated. Thanks Mike
Mike Monaghan <mtjmonaghan@aol.com>
Phila , Pa USA
Monday, October 26, 2009 at 14:35:21 (EDT)

I'm am so angry that it took 14 yrs for the doctors to be able to confirm this disease in my sister. She passed away from it on monday morning.
Erin Knox-Nielsen <knoxnielsen@gmail.com>
Buckhorn, on canada
Friday, October 23, 2009 at 15:33:41 (EDT)

My husband was told he had moya moya in May 2008.Since then his doctor has been keeping an eye on him. September 2009 he was told that he need surgery on his right and soon after that on his left side. Sam (my husband)& I will be traveling in the next few days to meet with Dr. Dong Kim in Houston, Texas to discussed his surgery. Has anyone heard of Dr. Kim. We would appreciated any information. Good Luck to all and God Bless.
bonnie <bonniec59@yahoo.com>
alice, tx USA
Thursday, October 15, 2009 at 14:41:36 (EDT)

My son Nathan is 8yrs old, he was diagnosed with Moyamoya disease Dec 08. He has had 1 surgery on his Rt side. We were told it failed. Dr. In Chicago said there was nothing else he could do for our son. We were devestated!! I started searching online and came arcoss this website. We contacted by email, and it all started from there. Our son is scheduled for Surgery Nov 10th 2009 and Nov 17th 2009 with Dr. Steinberg. This is all new to us. We are travling from Indiana. Any help on the best hotels or attractions would be helpful. We are leaving on Nov 2nd, so we have a week of tests before surgery. We would like to find something fun to do. Please contact me.
Tracy- NatesMom <sassafrass98@aol.com>
union mills, in USA
Sunday, October 11, 2009 at 14:15:10 (EDT)

I found out I had Moya Moya Disease two years ago when I suffered a stroke. I had been incorrectly diagnosed with Multiple Sclerosis (MS) 34 years ago. I would like to talk to other people with Moya Moya Disease to see how they are coping with it.
Ethel Fordyce <ethelfordyce@hotmail.com>
Santa Monica, Ca USA
Saturday, October 10, 2009 at 22:38:57 (EDT)

my email is carol eason @charter.net do not email me at carol eason 70@yahoo.com it doses not allow me to get my messages
carol eason <caroleason@charter.net>
coats, nc USA
Friday, October 09, 2009 at 20:29:22 (EDT)

Hello everyone, how are you doing now im doing good unless i get stress or give out .I would like to know some of the thing that you had to do to get your ssd so please email me
carol eason
coats, nc USA
Friday, October 09, 2009 at 20:24:37 (EDT)

my name is megan and i am the nineteen year old mother of a baby girl named bailee with the moya moya diease. we was told she had this june 7,2009. it all started when she started having seziurs only on her left side we had taken her to galion hospital because at that time we lived in bucyrus ohio. she had three seizurs in the 10min drive to the hospital (didnt know she was ha ving seizures at that time) when we got there she had two more seziures they did a ct scan and then brought us to nationwide childrens hospital in coloumbus ohio and this is where they did angiograms and mri and mra everything and came back to tell us she had an acute stroke meaning she had it 3 to 5 days before we had come to the hospital. it was very scary cause we had no idea she had had a stroke because at the time she was 6 months old and there are no signs for a stoke in 6 month olds. over the next month we stayed at nationwide and met two wounderful doctors and an amazing nero team. who decide to do lots of test to find out more. we know that she only has it on the right side of her brain which caused the strok and the seizurs on her leftside. the left side of her brain is not consistent with the moya moya. but does have a blockage in one artry. we ended up going home on june 17th 2009 and on new medicines .8 keppra and 1/2 baby asprin. we come to coloumbus 2x a month to see dr. grondin and dr. hyer who both are amazing. today is tuesday oct. 6th 2009 my daughter has had her first surgery only on the right side she is ten months old. her surgery went great. she is in picu now and has to remain a sleep and very medicaded right now because of her risk for another stroke is very hight the day of and the first week after surgery. so please pray for her recovery and i know all of u will be in my prays. PRAYING, megan
megan <haydensmommy7707@yahoo.com>
mansfield, oh USA
Tuesday, October 06, 2009 at 22:21:46 (EDT)

I was prgnant with my girl in 2001. I got a stroke before I had her and I didn't understand why. They said my blood was to thick. I had another stroke in 2007. They said that one was because of stress. Now they are saying that I have MoyaMoya. The doctor was going to do my surgery said he couldn't do it. Because I had a thin artery. We got a second opinion. They are going to do the surgery when we get everything arranged around my house. They are going to have to do two surgeries. Left one,they are going to use my artery next to my eye. Right one, They are going to use my jaw muscle. There going to open my skull put the jaw muscle over top of it and put my skull over the top of the jaw muscle they put next to my brain. We are going to try to get this done before this year is up.
Natalie Adkins <satssugar@yahoo.com>
Hernshaw, WV USA
Tuesday, September 29, 2009 at 18:36:46 (EDT)

My name is Cindy West. I am from the Somerset Pennsylvania area(about 1 hour east of Pittsburgh).. I had a stroke 10 years ago, and after a lot of wrong diagnoses, I had an arteriogram at Falk Clinic in Pittsburgh and they diagnosed me with moya moya. I had an stmca bypass at Presby Hospital with very good results in 2002 on my left side. My surgeon/fantastic doctor whom I saw regualary at Presby for years prior, had left in 2003 to start a practice in Albuquere, NM. To make a long story short, I had to have another bypass on the right side and I had that done in Cleveland Clinic because finances, three girls, my husband and I couldn't make it out west to NM, that right stmca was done in 2005. I had been doing okay after both surgeries, still had headaches and both arms would get numb occasionaly but recently in past 3 months I have had more pronounced tia sypmtoms, numbness, weakness on left side in July, that recovered in a day(left arm and leg) now it happened to my right side, same thing arm and leg on August 30, and I am having to go through rehab, therapy, etc. for the past 4 weeks, its starting to come back, but we are at a loss to try to get help. The doctors do not know anything about this disease around here, and I saw your info about this wingspan, and I am going to look into that. Just wondered if anyone had any input, information, etc. I am very frustrated and discouraged, and do not know what to do! Thanks so much Cindy
Cindy West <westercin@aol.com>
Boswell, Pa USA
Friday, September 25, 2009 at 09:49:50 (EDT)

my last entry was 2-16-07 since then I have had a triple heart bypass and my left leg amputated above the knee, BUT I'm still here, please whoever you are, wherever you are don't give up hope, I was first diagnosed with MM in 1994. Life hasn't been easy but considering the alternative I'll take it. I'm 57 years old and have 5 grandchildren that give me the will to go on everyday. Actually it is my whole family, wife, two daughters, grandchildren, and pit bull puppy that keep me going everyday.I wish you all the best of luck, remember, just keep on keeping on!! God bless!
Gary Preston <pchairrider1@yahoo.com>
Jacksonville, Fl USA
Thursday, September 24, 2009 at 20:58:14 (EDT)

I,too have Moyamoya and have undergone 2 sugeries.I was dx. in 1997 then in 1998 i had a bleed on my brain which was when i had my 1st surgery @ Medical Center in Augusta,ga..Today i still experience tias @ intervals.Does anyone have information regarding a female with this disease and have it affects their body during pregnancy?
sherry greene <trae10@windstream.com>
milledgeville, ga USA
Thursday, September 24, 2009 at 16:34:48 (EDT)

Hello, I'm a french canadian mother very anxious. My little boy is 13months old, and doctor diagnostic (2weeks ago)he has moyamoya disease. I try to find informations about moyamoya, but in french it's very rare....I think this website is perfect and very clear. However my english is not high level and it's a bite difficult for me. I'm anxious cause the neurologist I get, hasn't see this case (moyamoya) often, and I feel like he doesn't know very well what to decide for my boy. He give drugs to my boy and told me we should wait for surgery cause 13 months old is a young age for surgery...I don,t know what to think, and i don't know what to do. In usa they look good with moyamoya. I write here today with hope, with hope to have a sign.
Sonia <soniatrottier@hotmail.com>
montréal, qc canada
Wednesday, September 23, 2009 at 18:39:24 (EDT)

Hi its Vickie mother of from Melbourne FL. I have not posted in some time sorry. Well today I'm 16 months post surgery (ECIC and right temple by-pass). Things are great no change since May 2008! I am staying strong thanks Dr Unger from Melbourne and DR Hanel from the Mayo Clininc in Jacksonville FL they are great!!! Wanted to let you know that I am going onto the DRS website as well to push help the Doctors to have MOYAMOYA on their show!! please help us and vote!!! God bless everyone with disease and your family!!! Take care!
Vickie Anthony <vickieanthony@yahoo.com>
Melbourne, FL USA
Tuesday, September 22, 2009 at 15:01:10 (EDT)

My son is14y/s who been diagnosed MOYAMOYA and had EDAS operationin his right head last month. His DSA shows his left head stage 2 and need another operation but he hasn't got symptoms in his right side of his body yet.Is there anyone know when is good time to have another operation and which tape of operation suit him? EDAS or STA-MCA? tHANKS
feng <zhaofengjie7@hotmail.com>
Uk
Tuesday, September 22, 2009 at 09:54:28 (EDT)

hi my name is kimmie i am 30 years old i found out i had moyamoya in september of last year i had to have a arterialbypass on my right side you cant even tell i have had a major brain surgery i had my one year check up and every thing seems to b goin great the doc said new vessels are already startin to grow and the blood flow has picked up on both sides i thank the lord every day and the doc who saved my life dr zuccerrello in cincinnnati
kimmieb
USA
Sunday, September 20, 2009 at 15:20:01 (EDT)

Because it can be a bit difficult to locate, I thought I'd let you know that as of today, 9/16/09, Moyamoya Disease is on page 35 of the "Disease & Illness" category (see my previous guest book entry on 9/14/09 for more info). I hope you'll vote for MMD as a topic for the TV show, The Doctors. Currently MMD as an on-air topic has only 180 votes so many more votes are necessary if we want the producers to select MMD as a topic to raise awareness for this disease. Thank you!!!
Jennifer Berry <yunnanbaby@gmail.com>
Indianapolis, IN USA
Wednesday, September 16, 2009 at 12:36:38 (EDT)

well as of tuesday i will have my operation for Moya Moya Disease im very nervours and scared of whats gonna happen during and after it so wish me luck
Brian Dazey <lonestarfan2009@yahoo.com>
canton, oh USA
Sunday, September 13, 2009 at 22:31:53 (EDT)

Hello. My 6 y/o daughter was diagnosed with MM in May 2009. I just submitted an idea to the show "The Doctors" to raise awareness about Moyamoya Disease. If you'd like to vote for the show to produce this idea, you can go to http://www.thedoctorstv.com/produce/vote, look for Moyamoya Disease and cast your vote.
Jennifer <yunnanbaby@gmail.com>
Indianapolis, IN USA
Friday, September 11, 2009 at 10:52:10 (EDT)

hello and how is everyone doing the question that i want to ask is are you working with this problem . and was you able to get your disabilty please let me know thank you.
carol eason <caroleason70@yahoo.com>
coats, nc USA
Thursday, September 10, 2009 at 00:12:36 (EDT)

In Feburary 2008 I began having migraines. Normally that is nothing new to me. I have had them since the 4th grade, but these were different in that they started with my eye right watering, right face going numb and then the pounding. Plus they were every week lasting 3 to 5 days 24 hours. nothing over the couner helped. As usual I worked through them. I also work in neurology as a tech. Finally in October I told my doc. I could not take it and she ordered aN MRI. Hence MoyaMoya. Old films always showed a right MCA flow. I had surgery in Madison WI on Dec. 9, 2008. On Sept 14th I will go for my six month check up.
Jeanne Jacowski <tjaco8606@sbcglobal.net>
WI USA
Monday, September 07, 2009 at 12:49:00 (EDT)

Hi my name is Larry, and I had a stoke while working in the Seattle area in November 2007. After a couple of weeks to get me stable enough to travel, I was sent back home to the Houston area (Katy actually) for further treatment. After a couple months of speech therapy, and treatment from my PCP, I was accepted to be treated at the stroke center at Methodist hospital, in the Houston medical center. 6 months after my stroke I had my first angio which showed that the left side was completely blocked and the right was already partially blocked. The angio also showed the presence of the moyamoya vessels on the left side. My neurologist decided to put a wingspan stent in the right side to try and keep that side open, and at that point he wasn t convinced that my problem was Moyamoya. He put me plavix and aspirin and said we would do another angio in six months. Well 6 months later the Moyamoya vessels on the left side had expanded, the right side had become more occluded even with the stent and Moyamoya vessels were now becoming visible on the right side as well. At my next appointment my neurologist decided that this probably was Moyamoya and that I should see a neurosurgeon, which I did. I am now scheduled to have STA-MCA bypass on the right side on September 14th, and the left side six months later. So far I have been very lucky. My stroke only affected the speech center of my brain and after therapy I now have very few problems with my speech. I have also had Two TIA s within the last couple of months but those went away in a week or two. Hopefully my luck will hold and I will recover from both surgeries without any further problems.
Larry Krauss <lkrauss1@comcast.net>
Katy, tx USA
Friday, September 04, 2009 at 21:35:07 (EDT)

hi i just wanted to say that i am so happy that there is a support group for families with a child suffering from moya moya and hope to join so i become part of this group in talk more about my nephew who has moya moya
denise <dnt529@yahoo.com>
pinellas park, fl USA
Monday, August 31, 2009 at 16:46:07 (EDT)

Hello my Moya Moya family, I haven't log in her for 3 years because I had my bypass in 2005 and everything was OK. Had my regular angiogram to make sure that the passageway was clear and it is, however, my other side that I didn't get operated on has worsen. I had a TIA recently and is experience numbness and stroke-like symptoms again. They have scheduling my second bypass for October. This time I don't know how to feel. I am displaced because this side is worse. I wish there was a solid cure or a pill for this disease!!
Gennie Scales
Durham, NC USA
Sunday, August 30, 2009 at 21:51:04 (EDT)

Hi everyone! I had a wingspan stent put in the artery in my brain that was causing the moyamoya. It is a pretty new procedure done by only a few Doctors in the country that performs this kind of operation. I had it done 4 days ago and I feel great! I have had headaches off and on for the last 4 days but that should go away in about another week. I actually felt like I got a new lung because I can breath better than before I don't feel like I'm gasping for air like I had been. For information on it just look up wingspanstent.com. The doctor that does the operations on it is Dr. Mark Harrigan at The UAB hospital in Birmingham AL. I've had a brain surgery 10 yrs ago a heart valve replacement surgery 5 yrs ago and a stroke and probably 15 TIA's in the last 10 yrs and I've never felt this good as I've felt in the last 4 days. I actually feel like I'm 23 yrs old instead of turning 41 in a couple days!
Chris Durst <chrisdurst39@aol.com>
Birmingham, AL USA
Saturday, August 29, 2009 at 04:02:36 (EDT)

Hi everyone! I had a wingspan stent put in the artery in my brain that was causing the moyamoya. It is a pretty new procedure done by only a few Doctors in the country that performs this kind of operation. I had it done 4 days ago and I feel great! I have had headaches off and on for the last 4 days but that should go away in about another week. I actually felt like I got a new lung because I can breath better than before I don't feel like I'm gasping for air like I had been. For information on it just look up wingspanstent.com. The doctor that does the operations on it is Dr. Mark Harrigan at The UAB hospital in Birmingham AL. I've had a brain surgery 10 yrs ago a heart valve replacement surgery 5 yrs ago and a stroke and probably 15 TIA's in the last 10 yrs and I've never felt this good as I've felt in the last 4 days. I actually feel like I'm 23 yrs old instead of turning 41 in a couple days!
Chris Durst <chrisdurst39@aol.com>
Birmingham, AL USA
Saturday, August 29, 2009 at 03:59:49 (EDT)

hello my name is carol eason and i found out that i had moyamoya diease june 17,2008 i was at wal-mart with my mother as we walked up and down the rows .i found that my left side was very heavy like i had another body on that side i told my mother about it and we was on our way home and all i known is i just slumped over on my mother and she took me to the hospital in dunn n.c. and they kept me in the hospital about 3 days . so when i went to see my doctor he told me i had moya moya diease .i had my surgery at duke .
carol eason <caroleason70@yahoo.ocm>
coats, nc USA
Wednesday, August 26, 2009 at 22:51:32 (EDT)

Hello. I'm 56 years old and have lost my mother, brother and sister to moyamoya. I myself was diagnosed with aneuretic dilatations and abnormal formations consistent with moyamoya back in 1996. One neurosurgeon told me I would benefit from bypass surgery but I was advised by another surgeon who operated on my brother that it would probably not help me and that what I have more resembles lupus or some kind of inflammation. Since then I have been on aspirin regimen and taking COQ10, Red Yeast Rice, B-complex, and some other herbs. I used to get a migraine aura without headache once in a while but currently I'm symptom free. I still expect that this disease will get me eventually but so far, so good! I'd also like to hear from others who are using excercise and natural methods to forestall strokes.
Leslie
Pittsburgh, PA USA
Wednesday, August 26, 2009 at 20:10:00 (EDT)

I had a stroke 5yrs ago and I had a bad heart valve so I had a valve replacement surgery. I kept having TIA's and it was finally found out I have moyamoya diseas I had a cerebral angiogram on Friday Aug 21. I am having a wingspan stent surgery tomarrow Aug 24. I'll let you all know how it went.
Chris Durst <chrisdurst39@aol.com>
Birmingham, AL USA
Sunday, August 23, 2009 at 21:53:49 (EDT)

I'm a wish granter for Maw A Wish and just recently received information on granting the wish of a young man with Moya Moya. Your website allowed me to understand this illness with ease and get a better feel for what my wish child may be enduring. I think that it's amazing that you created such a supportive and informative community for individuals and families sharing the same experiences. You're an incredible person and we are all very lucky to have people like you to bring such communities together. Thank you for all that you do. DQ
Delana <punkin2412@Hotmail.com>
Naperville, IL USA
Saturday, August 22, 2009 at 01:23:42 (EDT)

my 13 year-old son has been diagnosed with moyamoya yesterday 8/13/09.He have had 3 strokes.
tennile bradberry <tennilejb@yahoo.com>
birmingham, al USA
Friday, August 14, 2009 at 10:14:11 (EDT)

Hi, my name is Pam and my daughter Courtney, 13, was diagnosed with Moyamoya on July 20th at Childrens Hospital of Philadelphia. We have since seen Dr. Smith of Childrens Hospital Boston, and are proceeding with an angiogram, then surgery on the 25th. From my first e-mail to them, Dr, Scott and Dr. Smith have responded to me very quickly, which I am so thankful for. Any pre-surgery advice would be extremely helpful, and this forum seems to be THE place to get it! My daughter's only symptom is a headache that started in May and NEVER went away. The doctors told us she had a chronic daily onset migraine, which ws their only diagnoses. My husband and I pushed for further testing because no meds they tried ever got rid of the headache. Her first MRI had what my pediatrician said was an "overread", and said she would have another MRI in August. When the headache persisted, we insisted they repeat the test. So much for there being an "overread". And here we are today, anxiously awaiting what comes next. Any advice would be greatly appreciated. Thanks, Pam
Pam <Prankin5@comcast.net>
Sellersville, PA USA
Thursday, August 13, 2009 at 09:15:28 (EDT)

Hi, After two surgeries for MM, the first in Oct 06 and the most recent in 08 I have had my first TIA last week since my surgeries. I'm scared to death. I really thought I was done with all of this. I absolutely thought that the surgeries would correct all of this. I guess I was wrong. Could anybody tell me what is happening. Is it getting worse again. I do go back into the hospital on the 27th for a arterialgram, but I'm so scared. I know MM is not curable. But I didn't know it would come back so soom. I had a ECIC on both sides. Any advice would be greatly appreciated..Bless all of you.
Tresa <tj98809@bellsouth.net>
Nashville, Tn USA
Sunday, August 09, 2009 at 03:49:00 (EDT)

Hi my name is Leslie. My 24 year old daughter Hannah had a massive hemmoragic stroke on the first of Feb./09.The Drs just told us that she had abnormal blood vessels in her brain, and then sent me for an angiogram to see if it was hereditary or not. My results were okay. They didn't really tell us anything until June 4th. That is when they confirmed that she has Moyamoya. And also that this was her 6th stroke. They are figuring that her first stroke was when she was 4.5 years old. Also the carotid arteries on both sides are almost completely gone. The doctors say that she is not a candidate for surgery. More tests are being done, but the neurosurgeon says she is a walking timebomb. She has a 6 year old son that the doctors say is a true miracle baby, as they don't know how she managed to get thru the pregnancy, delivery, and major surgery 2 years later without dying. From the stroke she has lost the left periferal vision, and some neglect of her laft arm and hand. Her memory has also suffered more. At her last visit the stroke neurologist told me to look up Moyamoya on the internet and it brought me to you. Thankyou so much for this site. I'm hoping someone can give me some idea as to the correct questions I should be asking. They say surgery is out due to the fact that her brain is being supplied by small vessels all acting together and they are afraid if they did surgery that she will either have a massive stroke and suffer irreperable damage or die. Hannah dooes not know all this as she is too scared to hear the truth. She says that it is enough that I know. She may be physically 24 but mentally she is in her teens. Sorry this is so long.
Leslie Janzen <zookeeper0210@hotmail.com>
Welland, ON Canada
Monday, July 27, 2009 at 19:45:32 (EDT)

Hello my name is marlene . I was 25 when i started having problems, my arms would ge very weak when i was at work . so i went to my doctors and she sent me to a specialist and he said i had carpell tunnel and treated me for that . well a while later down the road my left leg gave out on me ,so they sent me home from work and then the nxt week i got up to get ready for work and could not walk well i went back to the doctor and she sent me to the hospital ,i was in there for a week doing tests and in the long run they found out i had moya moya2years later that was .having mini stroke after mini strokes. then they finnally told me i had to have brain surgery so after brain surgery i had a stroke . I had to learn all over again tie my shoes , dressmyself,washmyself count ,write and tell time . since then i have had 5 more strokes and that was 1997 and now it is 2009 . thanks for reading, marlene smith
marlene smith <marsms1512@verizon.net>
PALMYRA, ny USA
Wednesday, July 22, 2009 at 15:19:48 (EDT)

Do you still remember us? We are from Poland. Our daughter - 2,5 years old Hania -is suffering from the moyamoya disease and in December our baby girl experienced two ischemic apoplectic strokes within a period of a month. Here in Poland nobady wanted to help us, but thanks to your help, sending us the e-mail adress to many specialists in moyamoya disease and their intervention, in May our daughter was operated. We would like to thank you from all our heart for your help with Hania s case, for your support and your lovely letters. We apologize that we did not notify you about the operation earlier, but we spent a very long time in the hospital with Hania. We are very grateful for your help. In Polish Child Health Center- seemingly called the best hospital in Poland we had to cope with lack of understanding and little knowledge about moyamoya. Doctors in Warsaw assured us that the operation is not necessary, that there is no chance for saving Hania s life, and that they do not give permission for Hania s treatment abroad. Now we know that the best Child Health Center in Poland is just our dream. But thanks to Dr. Scott s intervention we find wonderfull doctor in Lublin. He helped us and operated on our Hannah. We could not believe that after so many months of fighting for our daughter s life, the surgery would be finally performed in Lublin, Poland. Owing to many kind people from our city Hania has a website www.lewko.eu where some information about moyamoya in Polish can be found. As of today, one month after Hania s surgery, our daughter feels much better. She does not eat through a tube any more. Unfortunately, Hania still suffers from very strong body spasticity. She does not speak or move, but we believe that hard work with a rehabilitant will bring some positive results. We know the consequences of two strokes can be severe for her, but we hope that young children come back to their shape very fast. That is why, we-her parents- will do everything to help her become independent. We were wondering if you could help us one more time and give us an email address of any rehabilitant that works with children with the condition similar to Hania s. We would need his/her professional advice and assessment of Hania s rehabilitation that is taking place here in Poland. We just want to make sure that rehabilitation services including physical therapy are provided in the most efficient way. We want our daughter-more than anything else-to recover and enjoy life just like many other children. Perhaps you could give us some advice how we should rehabilitate Hania and what medicines our Hania should take? We would be very grateful for your help in this case. Ewa, Peter, Hannah from Poland
Eve, Peter, Hannah Lewko <kinga@viisonjobs.com>
Poland
Tuesday, July 21, 2009 at 04:52:40 (EDT)

I have an eight year old son with neurofibromatosis type 1 and we thought he just had migrane headaches because it runs in the family. A few days ago he was dignosed with Moya Moya. The neurologist is starting him on aspirin and medication to prevent migranes. He has not had any seizures or strokes only headaches. If someone can let me know if their child has both conditions as well and what avenue of treatment they persued, that would be very helpful.
Nancy Lahey <mnlahey@bell.net>
london, on Canada
Sunday, July 12, 2009 at 23:40:36 (EDT)

Hello. It's me Janette Sanchez again. I realized I had not posted anything about my second surgery, so I figured I'd better get busy! I was due to have the second surgery (my sta-mca bypass was unsuccessful) in June of 2008. Many complications led me to end up having it in October of 2008. I had the radial artery harvested from my arm and fused through my neck to the coratid(?) artery into the right side of my head. It took an exhausting 15 hours to do the surgery, since all of the vessels in my head were so tiny. But nonetheless, my surgeon found one he thought would work. I was surprised that the only pain I had this time was my arm. After 2 days I underwent another angiogram only to find the artery had already closed. Once again back to square one. I'm thankful I went through the second surgery though. I am however discouraged that I have had both of these procedures and neither of them worked for me. I'm only 35 so I still have lots of life ahead of me. I am part of a research study for MMD in St. Louis, so that makes me feel better knowing that what I go through could help another person eventually. My surgeon has told me he will not go back in on the same side since I would probably not make it out of surgery this time. He would have to go too far into the frontal lobe and the chances for me to have a stroke and die would be much greater. We are waiting on the results from the research study to determine where I go from here. If anyone has any insight for me or questions, please feel free to email me. May God bless each and every one of you!
Janette Sanchez <jansan74@gmail.com>
Fort Worth, TX USA
Sunday, July 12, 2009 at 12:38:45 (EDT)

My son Tyler is a 19 year old male adult who was told on Wednesday that he has MoyaMoya. He had a stroke and his left side was affected. We are at the present time at the Mayo clinic in Rochester,Mn. He was in the stroke unit from Monday till today. He is now in the rehab unit until July 6th at which time they will do surgery on the right side. Aprox. 2-3 weeks after the first surgery they will do the left side. They want to wait for awhile because of the damage the stroke did to the brain. I have spent countless hours on the internet studying MoyaMoya. This is by far the best webset I have found as far as layman terms go. Thank you so very much, I would sure like any input and advice that is offered. Many prayers have and continue for Tyler and his minor setback in life!! Thanks mike
mike haugen <mikehaugen1@hotmail.com>
saint peter, mn USA
Saturday, June 27, 2009 at 20:38:43 (EDT)

Hello everyone, I got the news that my son has moyamoya a few days ago. I had never heard of the disease before. Jonathon is a very active athletic nine year old. He wrestles and plays football. He has always struggled with severe headaches from the age of three. In the past week Jonathon has has three TIA's. Many tests later they have diagnosed him moyamoya. My family and I are struggling with which surgery would be the best for Jonathon the EC-IC bypass or the Pial Syraangiosis. If anyone has any input please email me Thanks Deann Cornwell
Deann Cornwell <Oden114h4l@yahoo.com>
Johnstown, oh USA
Saturday, June 27, 2009 at 10:12:45 (EDT)

the reason i want to be part of the guest book is to know more about moyamoya desease. i've was hospitalized last august of 2008 and with findings as moyamoya patient and i was not been operated just taking my oral medications only. per my doktors' advised.
Anne Kalaw <annek_09@yahoo.com>
makati city, Philippines
Thursday, June 25, 2009 at 09:32:35 (EDT)

I am awaiting results and for the doctors to meet my 11 year old son has neurofibromatosis 1 and has had many mri s , and other tests to follow this didease , he was seen in the stroke clinic, a few weeks ago and it was quite shocking to hear that he was at high risk for a stroke , in the stroke clinic they mentioned this disease Moya Moya , he had an angio gram done 2 days ago and now we wait , to find out if it is Moya Moya i was a little scared how can one lil guy get 2 rare conditions , and i found this web site , so thanks , they have already started him on the aspirin but hes having a hard time with it , any info you wanna share would be greatly appreciated, as i am trying to learn all i can , we are now awaiting a call from the stroke team , once they all meet after his tests the past few days , he is seen at The Hospital for Sick Kids in Toronto, Ontario.
michelle <michiee66@hotmail.com>
etobicoke, canada
Thursday, June 18, 2009 at 09:21:56 (EDT)

hay everyone. my almost three years old dougter had her second surgery yesterday in israel - DR FELDMAN and it looks like every thing is o.k we had the first surgery last year . this site gave me allot of strength thanks
jackline <jakyatias@gmail.com>
jerusalem, ISRAEL
Tuesday, June 16, 2009 at 23:25:27 (EDT)

Hi, my name is Val and I have a 14yr old Down Syndrome girl,she had a stroke in 2004 which only affected her for a while, slightly loss of arm movement and speech, under Great Ormond Street, they thought she had Moyamoya on one side but were not sure so they decided to scan her yearly, to keep a eye on her, nothing changed until this year. Had MRI in May and went back for report,was then told that she now has moyamoya on both sides.She is having surgery in the next couple of months. At present she is fit and healthy (touch wood), but Iam concerned what her future will be like. Would like to hear from other parents, who's children have Down Syndrome and moyamoya and who have had the surgery. Very frightened, we have been expecting it, but she has gone 5years, with good health, it has been like living with a time bomb. We are very lucky to have her at Great Ormond Street under Dr Dominic Thompson and have great faith in him, just praying that everything goes ok.
valerie Thomson <val.thomson@ntlworld.com>
england
Tuesday, June 16, 2009 at 16:31:20 (EDT)

Hey, my name is Mendi and my just turned 6yr old daughter Mechelle has recently been diagnosed with Moyamoya. We have been through the CAT, EEG, MRI and MRA tests and now the doctor is wanting to do the angiogram. My daughter had a one-time seizure in April '09 and that is what has started all the tests and now the diagnosis. The Neurologist has said that this is not hereditary, but the neurosurgeon says it is hereditary. Everything is moving so fast and they are wanting everything done now, and my head is spinning. I want what is best for my daughter, but I am scared to death for her. I don't want to make a mistake, and I don't want to make her go through something that is unnecessary. I don't know anything about the neurologists and surgeons. We have seen a neurosurgeon at the St. Louis Children's Hospital yesterday. If anyone has any information on the surgeons there good or bad I would appreciate the help. If there is a diet or physical therapy that we can do to help the situation, please let me know.
Mendi <m.enloe@yahoo.com>
St. Clair, MO USA
Saturday, June 13, 2009 at 14:13:01 (EDT)

My 5 year old daughter has just been diagnosed with MoyaMoya. She had 2 massive bilateral strokes last year which left her with speech difficulties, right side weakness and judgment and attention problems. She had the burr hole procedure done at Cook Children's hospital in Fort Worth Texas. She has been on aspirin therapy this past year. She is currently having TIAs and they changed her therapy from aspirin to Coumaden. They are saying that it takes years for the collateral to work and she currently does not have adequate flow to her brain. Her carotids have dissected and occluded. I have looked up the hospital in Boston that does surgeries on the little ones. Has anyone else had the surgery to have the arteries sewn to the brain surface. Allie (my daughter) just had the burr hole to allow more blood flow to find its way to the brain - no direct route. She hasn't complained of migraine headaches yet, is this something she has to look forward to?
Deb Marcotte
Claremore, OK USA
Thursday, June 11, 2009 at 17:09:18 (EDT)

Hi, just found this site and its good to know find other people with MoyMoya. I was diagnosed with MoyaMoya in 1980 at the age of 11 when I had my first bleed. I lost the use of my lefthand side and sufferred from slurred speech. I recovered and was able to lead a happy and full life. I became pregnant in 2002 and suffered another bleed. I again recovered and gave birth to my happy and healthy son in 2003. My condition is untreatable as the MoyaMoya is too deep so I would be reluctant for them to operate if they now turn round and say its treatable. I just live my life and not let MoyaMoya rule how I live as celebrate my fortieth birthday on Thursday.
Bev <beverley.k.casewell@mercer.com>
Birmingham, UK
Tuesday, June 09, 2009 at 09:00:24 (EDT)

hi everyone, my name is mandy and i have a 10 year old son who was diagnosed with moya moya when he was 7..hed had 3 mini strokes for them to make this diagnosis...he also has NF1!!..when we were told he had moya moya we had never heard of it, so didnt quite believe it..after finding out information on this condition i went into shock as i feared for my sons future..he has lost hes speech and is weaker on his left side due to his strokes..he has had 40 burrell holes in his head to hopefully build new blood vessels and create more blood flow around his brain..on his last scan this was working and he has new blood vessels growing and it gave us hope..his neurosurgeon DR SOLANKI from BIRMINGHAM CHILDRENS HOSPITAL U.K was and still is fantastic and always positive..he never held anything back from us and gave us the truth so we could always be prepared...that was over 3 years ago and since the surgery my son hasnt had any more strokes, goes to a main stream school and his speech is improving but very slowly..they say it takes 5 years for the brain to repair and we are seeing improvments..he is only on asprin and nothing is holding him back..hes just a normal 10 year old and has the attitude to go with it..haha!!..3 years ago i was in shock and never believed it could happen to my child..but you have to cope to be strong for your child and it becomes way of life and you have to deal with it to get through and to understand what is happening to your child and how it affects your family..to me my son is a normal 10 year old and is under the best care.. thank you
mandy <mandyfantarrow@talktalk.net>
tamworth, uk
Sunday, June 07, 2009 at 07:21:13 (EDT)

Hi all, Hi all, If anyone gets to go to the symposium in Stanford can you please post any information you think people will be interested in. Anything will be useful. Thanks, Entesar
Entesar <entsar_saad@hotmail.com>
Kuwait, USA
Saturday, June 06, 2009 at 04:18:08 (EDT)

My name is Brandie and I am 35 years old. I got diagnosed with MM in 1999. I have undergone the EDAS bypass, STA/MCA bypass, Muscle Flap Onlay, and a few bore holes. For the last ten years I have continued to have TIA's and other stroke like symptoms. Just about one month ago I begrudgingly found out that the MM had travelled from the left side of my brain to the right encompassing the whole thing. In May My neurosurgeon did a balloon angioplasty to one of the 2 miniature right side cerebral arteries that are left. From what I understand it was the first time that this has been done to a MM patient in the U.S. My vessell went from .3mm to .5mm. The size it should be is 5.0mm. Success sometimes comes a little at a time. I have a question for some of you adults and/or parent with MM kids. My baseline headache is a grade 4 out of 10. For about a month I have been waking up with a 6 and taking 2 midrin in hopes of getting rid of it. For the last week or so, I have been really struggling with grade 8 - 10 headaches. More so on the higher side. Now I am having to take 8-12mg of dilaudid and that covers it for a while and then it comes back. I dont think that they are migraines as they are not usually light sensitive. Any help with this would be greatly appreciated. Any advice or help that I can give anyone else; I've been through most everything, feel free to write or I will be glad to give you my phone number. Thanks very much gang!!
Brandie Pittman <brandie4levi@comcast.net>
Richmond, va USA
Thursday, June 04, 2009 at 20:35:10 (EDT)

Hello! I posted at the end of February, having just learned about Moyamoya disease, and fearing that it might be afflicting my daughter. After many months of round-&-round with her pediatric neurologist, and finding Dr. Scott at BCH who gave me invaluable medical advice & guidance, my daughter was properly diagnosed with MM after a CT angiogram. Thus far, she has not experienced any TIAs or strokes (that we know of) although she has had many seizure-like episodes (vacant or absence type) over the past 2 years, along w/some other neurological type issues (dizziness, numbness in fingers, legs) that cause me to question whether this is correct. She will be having an MRI on 6/9 to compare to the one that was done 2 years ago and then we will hopefully be getting a referral to Dr. Jodi Smith (a former fellow at BCH under Dr. Scott) to learn where we go from here. I shudder to think what shape my dear daughter could have ended up in had I not trusted my maternal instincts and pushed her doctor to consider MM as a serious possiblity in her case.
Jennifer <yunnanbaby@gmail.com>
Indianapolis, IN USA
Tuesday, June 02, 2009 at 18:41:28 (EDT)

My son has just successfully had his first of two pial synangosis ops in Pendlebury hospital - amazed at his resiliance! Have looked at some entries on the message board but would love to hear from any other people in the uk as it is so rare in this country!!
tina sheridan <tinasheridan@tiscali.co.uk>
manchester, uk
Tuesday, June 02, 2009 at 17:23:53 (EDT)

hi all. i am too used to im format, so u can forget the capitals, etc from me. i an 62 yr old w female 7 years post op bilaterally. my surgeries were done at stanford. My mother died of massive stoke at the age of 44. my first and only symptom was a left drift when walking. there are a lost of things that can happen to us as humans. those of us with MM can worry too much about the future and what might happen. What might happen is the same thing that could happen to anybody else out there. i went to stanford's mm picnic today. it was my first experience with others who had been there. i was amazed at the range of syptoms that got people into treatment for this. i was blessed that i had had no stroke or tias. when i was diagnosed, this site didnt exist and after my recovery and return to work and the followup studies i just went on about my business and didnt worry. thank you all for sharing your sories both today in person and here on line. five yrs ago i had a postop stroke due to a "too normal" bloodpressure during and abdominal surgery.I believe that my recovery and lack of neuro deficits is directly related to the positive effects from my 2 surgeries at stanford. thanks again for this website, DJ.
Diann <gfbarbere@aol.com>
Paso Robles, Ca USA
Sunday, May 31, 2009 at 02:36:32 (EDT)

Hello Everyone, Just joined this site. After 7 years of mis-diagnoses (from MS to Chorea Gravidarum), my 25 year old daughter yesterday was diagnosed with Moyamoya. It was like being on an emotional roller coaster not knowing what treatment we where facing, now we know what we are facing and will be doing research on Moyamoya and treatment. I will be on this line asking a lot of questions and looking for support. God Bless.
Wanda
Manchester, CT USA
Saturday, May 30, 2009 at 10:10:20 (EDT)

i have a doughter almost 3 year . last year in april we wake up and she could'nt sit, stand or move her hand all her left said was like,paralayzed we ran to the hospital and after 10 days they said that it can bee moya moya and the only neurosurgeon that treat this in ISRAEL is over abroad and lats start to treat her wikness in her left side. and we started to preper to the surgery . my sweet dougter she whanted so bad to walk and in three weeks she was walking and in aweek layter with hard work her left hand was back to normal .we had to do arteriogram befor the surgery BUT after few days she had another stroke and her left arm was not moving ( all this time we gave her shuts of blad thinner) we did the first surgery and after three days we were home and she felt wonderful but she had fluid at the place of the surgery for three month - very rare . we are a year after the surgery her hand is o.k she able to do evrything with her left hand not in a good qualityand she have problems to to release things with few fingers. three weeks ago we had wikness in her right hand that passed away and another wikness three days ago . in the 16.6.2009 we are going to the second surgery and hope it will go ok and we hope that after some time we will poot this in ours past and that my dougter can be busy, in growinng up . thank for the hope
jaky
jerusalem, israel
Friday, May 29, 2009 at 15:49:58 (EDT)

My brother was diagnosed with Moya moya last year 2008 after suffering from stroke. The stroke has paralyzed his left side of the body. He is has gone through 2 times of brain vessel by pass in Singapore under Doc Lee. The operations were sucessful and he is currently recuperating. Doc Lee has undergone some training in Japan in the field of Moya Moya and has offer good advise to undergo bypass operation to prevent further stroke that might cause more damage.
Steven Chiam <tatlingchiam@yahoo.com>
Singapore, Singapore
Friday, May 29, 2009 at 05:59:14 (EDT)

My daughter Adriana was diagnosed with Moyamoya in December of 07 at 5 months old. She had surgery on both sides of her brain and recovered very well. I heard about this site but did not have the internet until now. She is doing great. She has right sided weakness and recently had restraint induced therapy to help improve function with her right arm. She is now doing things with her right arm and hand that she could not do before. So many good thing have come out of our journey. I truly feel like my life has a purpose. I would love to hear from any moms with young children with the disease because I do not know what to expect in the future. We also have trouble with her doctors having different opinions about feeding, sleeping, and behavior.
Danielle Davis <michael_dani@yahoo.com>
Muskegon, MI USA
Wednesday, May 27, 2009 at 23:31:19 (EDT)

i would not saythatthis desses isablessing it'sbenhel since lost myspech a promising young woman to aadanmnrsainvalid
doretta (dodie) blue <dodiedblue@yahoo.com>
crosby, tx USA
Thursday, May 21, 2009 at 17:44:55 (EDT)

I am a family advocate, and am working with a family who has a 2 y.o. son with MM. He will be scheduled for surgery with Dr. Nathan Selden at Oregon Health Sciences University (OHSU) in Portland, OR, in June or July. His parents are frantic to talk with other parents of young children who have had MM, and have gone through the surgery. I have been looking through the email postings and have only found a couple of children in the 2 - 4 age group. 'My family' doesn't have a computer, so I am doing some of the research for them. They also have 4 children under the age of 5 (including the child with MM) and have recently been homeless. If you could share your child's story, especially details about the surgery and the outcome (remembering the questions and concerns you as a parent must have had), I will print it and share it with this family, and also email you with their specific questions. Thank you so much.
Roni <roni.l.rose@state.or.us>
Portland, OR USA
Thursday, May 21, 2009 at 16:09:40 (EDT)

Dr. Mangano at Cincinnati Children's hospital is amazing. He did my son'r first surgery and is getting ready to do my son's second surgery. Dr. Mangano is very personable and explains everything very thoroughly in terms you can understand. Those of you that are new to this disease and have no idea who to chose as a doctor, I HIGHLY recommend him. Alex is doing great considering what he's been through. A you can see I have posted on here before...very recently
Crystal Sams <csams1@gmail.com>
Hamilton , OH USA
Tuesday, May 19, 2009 at 09:24:03 (EDT)

Hi all, I am writing because my niece was diagnosed with MM recently. She is only 6 years old and had few strokes the worst was about 5 months ago when she could not move her right arm for a while. She lives in Kuwait right now but She will be coming to the USA soon. I have few questions and please if anyone can help me please email me, as we are really desperate for help Where is the best place to have the surgery? Who is the best physician in this field? How long was the procedure? How complicated was it? How long is the recovery afterwards? She only has a problem in her right side of the head. Thanks to all Entesar
Entesar <entsar_saad@hotmail.com>
Kuwait, Kuwait
Tuesday, May 19, 2009 at 04:29:42 (EDT)

Has anybody with moyamoya had any corotid artery stenting? And does ot help. I have had By pass surgery and temporal artey rerouting. EMDAS
Paris brown <Paris29sc@yahoo.com>
columbia, s.c. USA
Tuesday, May 19, 2009 at 00:11:18 (EDT)

I was recently diagnosed with MoyaMoya. There seems to be more info available now, but thought a support group might be a nice place to visit.
Riki Barker <trikib@gmail.com>
Rh, WI USA
Saturday, May 16, 2009 at 16:02:02 (EDT)

Hello, My daughter Neome 4 years old was diagnosed with moyamoya today. My husband and I are in shock and hoping that this is just a bad nightmare. She did not have a stroke, but had very bad headaches, and that is the reason we got an MRI done on her. The doctor is scheduling a MRA to and than we will know what we need to do after that. I am very worried that the doctor's don't know too much about this disease, and want to be sure that we will make the right choices. I read that Stanford is having a yearly moyamoya pic-nic at the hospital. It seems that they have lots of experience there with moya-moya. Did anyone had their surgery there?
Tunde Holdren <jamesholdren@att.net>
Prosper, TX USA
Thursday, May 14, 2009 at 21:19:32 (EDT)

Well, I'm new to this Moyamoya thing, my daughter is 8 and she has been diagnosed with Moyamoya after her first stroke, which has left her with weakness on her left arm and hand. We'll be going for an agiogram on Monday and we have scheduled the first surgery on June 1st. We are trusting in God and He is by our side, it hasn't been easy but He is by our side. I just want to let everyone know that God is in control and that he has a very special and perfect plan in everyone of you all. don't just hang in there, hang from God!!! I'm praying for all that has been happening in my daguhter and I will add all the families that are going through all of this. God bless you all!
Karin <handmadebykarin@bellsouth.net>
Weston, FL USA
Thursday, May 14, 2009 at 13:12:43 (EDT)

My then 8-year-old son was diagnosed with MoyaMoya in January 2008 after having a severe migraine with no feeling on the entire left side of his body. He'd been having migraines for a year or so and his pediatrician marked it up to reactions from the adhd meds he was on at the time. Being a single mother, I was devistated that one of my children was having such odd symptoms. I took him to Cincinnati Childrens Hopsital and they did CT Scans and kept him overnight then an MRI the next morning showed that he'd had extensive damage on the left side of his brain from previous strokes. His arteries were nearly closed. They had no idea how he'd gotten this far without knowing he had it. The neurosurgeon placed him on baby aspirin therapy and suggested we wait on surgery. 3 months to the day later he had 2 back to back episodes within 24 hours. Then they did an EMS surgery on May 5, 2008. He came thru with flying colors. He was off his aspirin for a week and had another episode on the opposite side of his brain but was otherwise ok. In the past year he's had very few TIA episodes and they keep putting off the surgery for the left side of his brain until the new channels of blood flow from his previous surgery are mature enough to attempt the next surgery. They are looking to do his second surgery at the beginning of June. He's gained 45 lbs from the rounds of steroids he's been on over the past 16 months but is otherwise a normal goofy 9 year old kid. He has serious memory difficulty and impairment of motor skills but is in therapy for that. He is doing well for the time being. Thank you for your website as it was the main source of infor I could find helpful when he was diagnosed
Crystal Sams <csams1@gmail.com>
hamilton, oh USA
Thursday, May 14, 2009 at 10:57:43 (EDT)

i will be going for sugery on may21/09,i am very scared i have the dease on both sides,the left side is the worse so it will be done 1st then about a year later my right side will be done
Debby Gutoskie <debby.gutoskie@sympatico.ca>
Chesterville, Canada Canada
Thursday, May 14, 2009 at 10:16:18 (EDT)

hi. my name is megan and i was diagnosed with moya moya at age 15. im now almost 19 and have not had barely any symptoms since my surgeries. at age 14 and 15 i had a stroke. we spent 2 and a half weeks in the hospital in childerns hospital in omaha and unmc doing every test and trying to find out what was the cause. finally, after the agony of being told they thought i had TB, they came to the conclusion i had moya moya. i had my first surgery in december and the second in march. my neurosurgeon was bill thorell. i dont know if everyone else has had to shave their whole head, but i didnt.dr thorell and his nurses braided my hair back and took care to shave just two strips on each side which are now scars. im very capable now though. i cant play sports without a skull cap, and that has ruined my love of pitching in softball. so because of not being very active i dont have alot of muscle. im about 5'4 and just 100 lbs haha im graduating high school sunday may 17th. but barely. i was a freshmen when i had the surgery and afterwards it was hard for me to write type or lift the smallest things like my books. i kinda gave up in school for awhile. now because of haveing to retake abunch of classes i have just enough credits to graduate hs. i should be really greatful that i can even walk and yet i hate the fact that the things i used to love and that came easily, i can no longer do without difficulty, or some use of precautions. im actually really selfish to think this way when i could have ended up much worse. no doubt i am very blessed. you could never tell by looking at me that i had two strokes and brain surgeries. but i still long to do normal teenage thins. normal college things that i wont be able to do. like drinking. not going to lie i have tried cigarettes, cigars, weed, and alcohol. but in the last year i realized how stupid i was being. i think i should probably go see a councelor, because everytime i talk about my surgeries and everything i start to tear. but then again i have not once cried during either surgery, or after either stroke, or one procedure. i feel good about it too. i feel tough for having been through so much and not shedding a tear. but then i think about what my future holds and it starts again. one thing im finding is that i require alot more sleep than my friends or i get migraine headaches. i dont know if this is because of the medicine im taking or the disease or just normal. but it sucks. i shouldnt complain, i know. i think back to when i was 14 and i would lose feeling in my right arm for a period of time. it wasnt the feeling where your arm goes to sleep and then as it starts to regain feeling it feels like pins and needles. it was really weird. cant quite explain it, but it seemed to spread through my fingers just by my touching the one finger to the other. no physician ever understood this. i dont know if all mm patients have the same feelings as in symptoms, but i guess it would be nice to know that someone out there knows how it feels. how i was feeling. what that feeling was. anyways im much better now. the average girl. i dont worry about anything extra that i have to do except take my medicine night and morning. i have to take trileptal am and pm, kepra am and pm and baby asprin in the pm. for that i am blessed thats the only thing i have to do. oh. almost forgot i do have trouble thinking up words to explain things. i know there is a better word for the situation or thing im describing, but for the life of me i cant think of that one word. if you would like to email, be my guest. i would like to know if there is anyone out there my age, like me. so if youre able to type on here in complete sentences, after what we have all been through, youre a miracle. god bless yall
megan haase <megz_haase_05@hotmail.com>
kearney, NE USA
Wednesday, May 13, 2009 at 00:39:48 (EDT)

does anyone know how long a person can survive for after having by pass surgery on both sides of the brain? although it has been 6 years since i have had this, i still don't know how long my life will go on for. i have been feeling quite unwell lately and am wondering if it is due to this disease. have to wonder if they have saved my life by operating or not. a stroke is a stroke so after having 16 of these stupid things (even after surgery) , i have to ask myself whether or not is was actually worth all the pain and suffering me and my family went through and still go through every day. if anyone out ther reading this feels the same as what i do, please send me an email !!!! i promise not to bite!!!! good luck and godblessxxxxxxxxx
kym <sleepy.71@hotmail.com>
mandurah, wa australia
Monday, May 11, 2009 at 10:57:35 (EDT)

I've just been diagnosed with it. Oddly, I'm an idential twin and my twin was just tested for it, and came out clean. We both had CAT and MRIs. I'm to be evaluated May 11 by Dr. Arthur Day, head of vascular surgery at Women and Brigham's in Boston. Your webpage and information has been most helpful to me.
Marilyn Miller <valmil@comcast.net>
North Truro, MA USA
Wednesday, May 06, 2009 at 16:29:12 (EDT)

Hi. I am a 39 year old white female from a very small town in Northwest Missouri. I was originally diagnosed with MM in July of 2003. My daughter discovered me slumped over in our livingroom and not breathing. Thanks to her quick thinking and repositioning my body, I made it to the ER. The doctors thought I had a blood clot because my right side was numb after 24 hours. I was taken to a Kansas hospital and met with a wonderful neurologist who right away said i had MM. My family had no idea what to do. My husband at the time, looked up everything he could find. There wasn't much to go on. My doctor had trained at Mayo Clinic. I was sent there 2 weeks later. After almost 6 weeks of tests, they confirmed the diagnosis of Moyamoya. However; the lack of information was not the problem. The doctors at Mayo Clinic were wonderful and told us all they could. I found out that my condition could be traced back to an brain injury i had when i was five. The hospital in Omaha shared my records with Mayo with my permission of course. I had tremors, strokes, and problems during my 3 pregnancies. My heart even stopped during my last two children being born. I was told several disturbing things about this funny named disorder. I would not be able to have any more children without risking my life. I would pretty much be on medication for the rest of my life. There was no surgery available to me because of the risks. And worst of all, they had never before seen such an advanced stage of MM except when doing an autopsy. I however am now going to turn 40 on May 10th. And celebrate my 3 beautiful daughters growing bigger. My hiusband left me due to the stress, my many mood swings, and medical bills. He has custody of my children. I checked out this site in hopes of finding someone out there like me. I lived in Kansas City Missouri when I was first diagnosed. I'm trying to remain optimistic about all of this.
Kery Ann Bennett <kerryannb@fairfaxmo.com>
Fairfax, Mo USA
Tuesday, May 05, 2009 at 00:44:37 (EDT)

Reading a local newspaper on a young man who has moyamoya and have added your information to a disability book I am compiling for a scout resource. Many thanks for your helpful information
Sandra <samgouldadsl@nsw.chariot.net.au>
Albion Park Rail, NewSouth Wales Australia
Friday, May 01, 2009 at 21:40:56 (EDT)

My sister was diaganosed with MM about a month ago and had her 2nd surgery last week at Stanford. My parents are with her and trying to keep "us" kids informed through txt and email traffics. It's a scary thing because we have never heard of this MM before. Thank God that my parents was on vacation in Seattle, when my sister who lived in CO, was told that she had to have surgery right away. Our family are scattered all over the four corners of the US (WA, PA, FL,and CO) and could not drop everything to get there. My sister and little brother will be going to CA next week after college finals to make sure our parents are hanging in there. We are trying to have at least one son/daughter/cousins with my parents at a time. I feel for the parents to see their kids go through things like this...Thank you for this support forum. Please pray for my sister and parents. Once again, thank you.
Gerry <drivespin@hotmail.com>
Philadelphia, PA USA
Tuesday, April 28, 2009 at 10:28:17 (EDT)

Please forgivemy spelling other mistakes. 2002 was quite a year, I was recovering from a reconstucted foot &stents; in my heart. I was not doing well in rehab,things like falling & such. They decieded to chec my coroted arteries. I had to drive myself 60 miles tothe Doctoer that day. Bless his heart he had to tell me that I was in serouse truoble.they were amazed that I was walking muchless driving. God had me in his hand that day (as he has all my life). My right himusfer wasall smoke & myleft had about a siver dollar size. See God does hold us near. I had both sides done between Oct 16th & Dec. 7th 2006. It has been a hard road to travel, but I am here. I was born 2-19-1943, a little old for this. there has been many things that I have had to lean over. Since then I have had a 5 heart bypass surgery. That make 29 surgeries in my life. But when you can see the sun,smell the flowers and hold my grand & Great children.How blessed Am I. Medicine is coming along way I pray that each and everyone of you that has this rarething will see treatments comeforth for all loved ones. It is wonderfull too know that there is someone who understands
Helma Elliott <helmaelliott@bellsouth.net>
Turners Station, Ky. USA
Saturday, April 25, 2009 at 13:43:31 (EDT)

I hope all are doing well. I have completed my bypass surgery at Stanford University and will be traveling back home with my husband tomorrow. Please let me know if there is anything I can do for anyone. I had my first stroke back in 1974 when I was 7 years old. I have lived with MM for 35 years and did not know anything about it until 6 weeks ago. I have grown up with and lived with MM practically my entire life. For parents with children who were just resently diagnosised please let me know if I can help in any way. I am going to be spending the next several months working on a MoyaMoya Foundation that will be available to assist families and patients with MM in all arenas. Including guidance, support, education, finacial, and anything else that is needed. I do not want any one to not have treatment because they can not find the right physician or pay for the medical expenses. I also want everyone to know what to expect before during and after surgery. We are truly a unique group of people that have been blessed with this rare disease. I have worked as a registered nurse for 15 years and had never heard of the disease. There are not enough physicians and general practice providers that even know about MM. It is time to educate as many people as we can. I know first hand how scary it is to find out that you have MM and will be there for anyone who needs a shoulder to lean on. Please feel free to e-mail me and I will respond within 24 hours. If there is anyone out there from the midwest that would like to get together please just let me know. God Bless!!!
Tracie <t.oneill467@comcast.net>
Danville, Il USA
Wednesday, April 22, 2009 at 01:15:14 (EDT)

Hi everyone. My nephew was diagnosed a couple of months ago. we are blessed that he has not had a seizure, but really bad headaches. His surgey is in June. He is 14 years old. I am so nervous I was looking for information and came accross this group. Your words are uplifting!
Colleen <colleenac1@yahoo.com>
Binghamton, NY USA
Tuesday, April 21, 2009 at 21:18:27 (EDT)

Hi Ewa, My brother was diagnosed with MM when he was 12yrs old about ten years ago. I know he was treated at the Great Ormond St Childrens Hospital in London if that is any help to you. He recovered quite well and though he now has some left side paralysis his treatment was a great success. Hope this helps.
PCO
Bradford, UK
Monday, April 20, 2009 at 17:29:29 (EDT)

I am a 29yr old female. Who had a stroke in 2006,and a small Tia in 2008. Then I started having head aches. Neruo wanted to find out why I had the stroke to begin with, so they did an arc 4 vessel ango plast ango gram on me this past march and found that I have the moyamoya disease. The blockage is in the back side of the brain. I am the 4 case They have seen at the oklahoma medical its mostly been children. so I am alittle nervous and scared, but I go monday to meet with the surgeon that is going to do the surgery. So if you all have any incouraging words you can give I am willing and capable to hear them.
natasha weigl <pitcher911@aol.com>
bethany, okla USA
Saturday, April 18, 2009 at 00:44:39 (EDT)

Glad to have found others, my 19 yr old daughter, Mallory has just been diagnosed with Moyamoya. We are scheduled to go to Barrows the last week of April for surgery. If there is anyone out there near her age that she can relate to she would love to. Right now she is just scared as am I and her mother. This came out of nowhere! no strokes, just a lot of fainting spells in a short time. Fortunately they did contrast enhanced CT and MRI and they showed her occlusions. Hope someone responds, I feel helpless take care Jack
Jack Dempsey <jdem77@aol.com>
Theodore, Al USA
Friday, April 17, 2009 at 15:46:42 (EDT)

Hi Again its been almost two weeks since my son had his stroke,Today his doing fine he's outside playing basketball,he had a number of test done over the past week every thing look prety good for now,I know hes not out of the woods yet. With sickle cell its a number of blood counts that have to be in the right perspective before he can have sergery to help his MMD so hopefully everything will go akay soon.With all the praying we are doing and recieving my worries have somewhat eased because i believe in GOD. again thank GOD for this web sit and the responce i got from vewers
lorenzo simpson <renzoone@yahoo.com>
inkster, mi USA
Thursday, April 16, 2009 at 16:40:53 (EDT)

I am thinking of you all. Our neighbors son ( 1 year old ) was just diagnosed with MM.
Paul Mackenzie <ptmackenzie@sbcglobal.net>
Deep River, CT USA
Wednesday, April 15, 2009 at 23:02:22 (EDT)

sono una ragazza italiana di 27 anni e il 31 maggio 2008 ho avuto un emoraggia cerebrale e mi è stata diagnosticata la malattia di moya-moya ma nessuno ancora a distanza di un anno a saputo darmi delle spiegazioni chiare su questa malattia.
assunta <assunta_81@live.it>
campomarino, italy campobasso
Tuesday, April 14, 2009 at 16:21:20 (EDT)

I am a 42 year old female currently admitted to the Stanford University Hospital. I had my Moyamoya durgery this past Wed. April 8th. I am doing fine. It is a little slow coming back, but I had very severily deplited blood flow to the rt. hemisphere of my brain. I am expected to be discharged from the hospital tomorrow. I have to come back on Wednesday April 15th for a second surgery. This one is not a MM surgery but for a tumor removal. I also have a meningioma on the right side of my brain that is pressing on the MM sight. I am also a registered nurse so from both the medical professionals perspective and a patient perspective I feel very possitive about my surgery and recovery. Just remember a couple things: Most of us with MM have had insufficient blood flow to certain areas of our brain for a long time. When the surgery finally happens it is definitly an enlightening expereince, but also takes some getting used to. I have tastes, sensations, and sensory input that I had not had for several years. It takes some people a liong time to recuperate from a surgery like this, and others ar up and going within a week or two. Just don't ever give up and keep talking to others who are in the same situation as you. Good Luck to all and if there is anything I can do tohelp please feel free to e-mail me.
Tracie O'Neill <t.oneill467@comcast.net>
Danville, Il USA
Saturday, April 11, 2009 at 23:26:47 (EDT)

A friend of mine has a 13 year old son whose was just diagnosed with MMD and had surgery yesterday. He is scheduled for his 2nd surgery in a month. He had 2 strokes last week which is how he ended up in the hospital to begin with. I guess today was not a good day as he was pretty much in a vegetative state for most of the day. Is this normal? Will he still be able to live a normal life? Please give me any information available as I have never heard of this until today. Thank you.
Kelli Michel <kllmichel@yahoo.com>
Arvada, CO USA
Saturday, April 11, 2009 at 00:08:56 (EDT)

Hi my son has just been diognosed with MMDtoday 4-7-09 it hurt so bad to even talk about it because he is my whole word he,s 11yrs old he also has sickle cell disease. He would have a crisis once or twice a year so the family can cope with it, but having a stroke three days ago has been hard on the entir family, this was his first stroke it was'nt that bad he did'nt lose any mobility but im so scared of whats to come I realy need some kind of support system someone to talk too.Im at alost for words This boy means so much to me,he is my youngest child i have three a daughter 22 a son 17. please email me if you feel my pain.
l simpson <renzoone@yahoo.com>
inkster, mi USA
Tuesday, April 07, 2009 at 19:20:34 (EDT)

Hi, my name is Paris. Im a 31 year old african american female who was diagnosed with MM in dec. 2008.I had surgery in 2 days after being diagnosed. i am doing well and keeping a positve attitude. I feel so blessed that i was glad to have a neuro surgeon who cared enough to do it so quickly. I am back at work full time and doing all the things i normally do. I don't no a whole lot about this disease, but i am still learning.
Paris brown <Paris29sc@yahoo.com>
columbia, s.c. USA
Monday, April 06, 2009 at 19:54:34 (EDT)

hello it has been two years since my son jaeden has been diagnose with moyamoya. two years in april since his surgery. i thought that the surgery would take care of everthing but my son still has slurred speech and leg weakness, numbness in his fingers. although his symptoms don't last long it scares me that it still happens. he is 7 1/2 years old. we are very lucky that he is with us today. he already had ct scan, mri's angiogram, that show his blood supply is good. he just had a follow up mri and we dont get the results until his appt with the neurologist april 9, i pray that everything will be ok. i fear for my son's future, i am so afraid that his symptoms will last longer and leave damage. is their anyone out there that can share positive stories about their moyamoya experience? i need help keeping a positive attitude. my son is my world to me and i need to be strong for him.
ezayas <jandezayas@hotmail.com>
allentown, pa USA
Tuesday, March 31, 2009 at 20:33:51 (EDT)

Hi all! Kym from Australia her again. Just checking to see if Jennifer is ok. Have been sending her msgs but not getting any reply. Jennifer , if you read this pleas contact me as have been worried about you. anyway, have been diagnosed with epilepsy (grand mal) , not very happy as blod flow as slowed down on right hand side and my surgeon has done everything possible. Hope i am here tomorrow.
kym <sleepy.71@hotmail.com>
perth, w.a australia
Monday, March 30, 2009 at 09:07:54 (EDT)

I went to the ER on March 12,2009. On March 13th I heard the term Moyamoya for the first time ever.My sister (dataqueen) immediately went on line and found this site. I was kept in the hospital for several days so she has been doing all my research for me. First I would like to thank all of you that have helped out with so much information. I was so lost those first few days that I thought I was drowning and your info was my life preserver. I am home now and the first thing I had to do was sign in. I just wanted to say thank you all again for the wonderful information. I am sure I will have questions as I go along this journey and it is so much comfort knowing a site like this exists.
juls <juls_p38@yahoo.com>
Racine, WI USA
Monday, March 30, 2009 at 03:20:24 (EDT)

I just found out last month that I have moya moya disease. I woke up one Saturday morning and lost use of my left hand. I went to the ER at the hospital where I work ano the doctor there told me my sugar was high, gave me an I.V. and sent me home. Overnight the symptoms got worse so I went to another ER and they did a cat scan and told me I had a stroke and I was then diagnosed with the disease after further testing. I am scheduled for surgery on April 20th.
Sunya <sunyakong@cox.net>
Gainesville, FL USA
Friday, March 27, 2009 at 18:20:52 (EDT)

My father was diagnosed with Moya Moya in december 2006, he was a white male in his mid 40's, as we all know very rare for this Moya Moya.... We did not know until after he suffered a stroke on the left side of his brain that he had MoyaMoya. He had a small stroke and drove himself to a local hospital in rural minnesota. They transported him to central minnesota (st cloud) where they had no idea what was wrong with him besides the stroke. He got worse and suffered more strokes, after that we decided that we had to bring him to the only place we knew could help him, the Mayo Clinic in Rochester, MN. They air lifted him to the Mayo Clinic. He was in the Intensive care for months after suffering more serve strokes. We thought we were going to loose him. He has since had multiple surgeries and is in physical & speech therapy. It has been tough for him, but he has gotten some of his speech back, mostly "yes" and "no" and still learning new words. You never think things like this could happen to you or your family. My family and I would recommend the Mayo Clinic in Rochester, MN for anything to do with Moya Moya, they saved my dad's life when other hospitals couldn't figure out what to do. If you want names of doctors you can email me, I can find out where/and which doctors my father had. I hope this helps any of you who have been recently diagnosed. It is a scary time but hopefully you can catch it before something serve happens. My families thoughts and prayers go out to all of you who are struggling with this disease. Stay strong you will get through it!
Coubal <acoubal@hotmail.com>
Clarkfield, MN USA
Tuesday, March 24, 2009 at 21:26:43 (EDT)

i am a 20 year old female and was told in dec 08i had moya moya and found out by having a full blown stroke the first week of dec. i just had my right side surgey and am doing farly well.. i just so happen to be in the navy so this causes issues. they have one surgen that specialised in blood vesles and was able to do my surgery he happens to be army. but i have been moved around and seen by pleanty of docters. i find this issue to be a blessing in discise. being dignosed at 20 i truly dont fit any of the seen things for this disease so my docters find it intresting. i have had a little hearing loss and a left side eye sight loss from my stoke but other wise dont have any true issues god willing. my life wasent easy to begin with being in foster cre from 7 to 14 i find this to be another bump in the road. i am around guys that have had legs blown off in irq and they find my scare from the surgery grosser then that. its kinda funny they have war wonds that dont fase them but a girl with brain surgery does. but all in all i am kinda happy to have a rare thing going on it just makes me even more uniqe i feel i was blessed with it and would love an email from any one even just to talk..
judi <judiboyce@gmail.com>
bethesda, md USA
Sunday, March 22, 2009 at 20:35:23 (EDT)

I am doing the same thing you did.Looking for answers,anywhere.I don't know if I have moyamoya,haven't been diagnosed w/it yet.It's just something somebody said on the first page I read @a symtom that I have had happen to me.Yes, I have definitely experienced numbness on the whole left side of my body just like someone used a marker.It scared me. I had that happen to me one night right after I got out of tub. It started getting numb on my left side in my arm(pins and needles).Then,I felt like my left leg was like a peg(like it was carved to a point athe end. Strange that it felt like a forty lb. weight just laying on my left arm. I couldn't move it and my heart rate I could see through my shirt. Called 911 cause I thought I was having a stroke or heart attack. The emts,and these people just stood there. I had to ask them to take my blood pressure. Yeah, I live in hicksville.My pressure wasn't bad,just 148/89. In which, usually my pressure is really low,like 110/68. So, on top of everything I am not sure if it is the surgery I had in '06(C5 Diskectomy)and they put titanium plates in.Since then I have been told I didn't even need the surgery and after the statute of limitations went out. My doc here said I had a million dollar lawsuit. In which, I am a christian and felt maybe I needed another opinion and the same result,I didn't need it. Now, the docs. that did the surgery won't see me. Making excuses that I need to bring an exray that shows it and also bringing up any balance I might owe due to one month w/out ins. They even seem arrrogant and hard to deal with.What am I to do? I am suffering.I am in pain,43,2 young boys that need their mother and she is stuck in the bed in agony. I hate my kids to see me suffer.All I know is something is terribly wrong and I have been to at least 15 docs. My list of problems:DDD,Spinal Stenosis,Myofascial,Fibro,and the list goes on. I just don't believe they can say that the pain I am expierencing is not something more serious. I feel like I am dying.I have tremors and it's in my neck and shoulders. Numbness stays in my hands and feet. Sometimes,in which is often my feet feel like risons and my arms feel like sticks that brake when moved. I crack all the time all over. I feel like I am being stabbed deep in my back and oh my knees are always painful.I can't stand long,I lean,lose my balance,drop everything,miserable!!! Anybody got any idea where I should look or what I should do.Help!!!!!!!!!!!! skeetelmore65@yahoo.com.au
Karen Elmore <skeetelmore65@yahoo.com.au>
West Helena, AR USA
Saturday, March 21, 2009 at 12:07:51 (EDT)

45 year mother of 2. 10 months post right side bypass surgery for MMD. Doing great and staying strong!!!! Thank you Dr. Hanel and the team at the Mayo Clinic in Jacksonville Fl. Thank you D.J. for this web-site. My prayers go out to each and everyone on this site and their families stay strong and god by with you all.
vickie anthony <vickieanthony@yahoo.com>
Melbounre, Fl USA
Wednesday, March 18, 2009 at 18:31:19 (EDT)

I have had both of my moya-moya surgeries. I am almost 20 years old. I really want a tattoo but I don't know what the side effects would be. I am no longer on blood thinners. any advice?
Heather Frick <virgin_crantz89@yahoo.com>
Cookeville, TN USA
Monday, March 16, 2009 at 19:07:19 (EDT)

Hello my name is Kimberly. My sister was taken to the hospital on Thursday and on Friday the doctors told her she has MoyaMoya Disease. I just found out yesterday about this and have been up all night reading everything I can find. The doctors are not telling her much yet as they are still running tests. She has had several strokes since Thursday. When I came across this site I was so excited because all of you understand what we are going through. I just got done talking with her and told her about this site so she maybe able to find some support when she gets out of the hospital. She has bleeding on the brain but tells me not to worry because the doctors are saying its a small bleed. I almost lost it when she told me because what is small. They told her "the blood on the brain is acting like acid". Now I haven't been able to find any information on how long we have till we have to close this "small bleed" and the doctors arent saying either. Just in the last 48 hours since I first found out she is loosing her short term memory. They gave her 3 words to remember and ask her to repeat them and after a minute or two they ask her to repeat the words again and she can only remember one. And that is not like my sister at all she has always had a good memory. She is in good spirits. All we know at this point is she has this disease and the docotrs are leaning to it being genetic.
Kimberly Hunkins <dataqueen@hotmail.com>
Osceola, WI USA
Monday, March 16, 2009 at 17:50:54 (EDT)

Do you have any information about specialistic clinics in UK that would make attempts for treatments of such cases like moyamoya disease? We come from Poland and we can't afford travel and treatment in USA. Our daughter has been diagnosed with moyamoya disease. Do you know if there are any clinics in UK? We look forward to hearing from you.
Ewa <kinga@visionjobs.com>
Olawa, Poland
Monday, March 16, 2009 at 09:37:26 (EDT)

I have just been (preliminary) diagnosed with moyamoya by my local neuroligist(after 4 mri's and a final mra) and it is not in the carotid artery but at the base of the skull- so it is in or near the vertebral artery. I am headed to the cleveland clinic for further evaluation. The initial indicators were 4 limb peripheral neuropathy. Has anyone else had these symptoms and had treatment at cleveland?
kevin a lawrence <kalaw1957@yahoo.com>
USA
Saturday, March 14, 2009 at 16:16:43 (EDT)

My daughter Pamela was diagnosed with MoyaMoya in 2007. Pamela will be 12 this year. Since then she has had 3 strokes, seizures and TIAs reoccurring. She also has Sickle cell anemia SS disease. So it took a while to completely get a handle on her MoyaMoya disease. I have to say this has been a difficult journey. She is scheduled for bilateral EDAS surgery today with Dr. Fisher, at UAB hospital in Birmingham. My heart goes out to all families dealing with MoyaMoya. Pamela s only wish is just to be normal. To all the families dealing with MoyaMoya be blessed and my prayers to you.
Patricia McArthur <mcarth_l@bellsouth.net>
Birmingham, Al USA
Monday, March 09, 2009 at 12:36:44 (EDT)

This message is from jim and kathy bogdonas. our son Nick was diagnosed with moya-moya a little over four years ago. he just had his 4 year anniversary date, surgery with Dr. R. Michael Scott, at Boston Children's Hospital. He will be turning 17 years old May 5th. His prognosis is very good, looking forward to a healthy, happy life. any questions please contact us. He also sees Dr. Berman Iskandar at Childrens Hospital in Madison Wisconsin each November to run his various scans, Dr. Iskandar also does the moya-moya surgery in Madison. thanks Jim Bogdonas.
Jim Bogdonas <jbogdonas@hotmail.com>
Rockford, IL USA
Monday, March 02, 2009 at 11:28:32 (EST)

ji! kym again. just wondering if anyone in australia is suffering from this disease abd has foubd this website. Thankyou DJ for setting this site up. It certainly will help a lot of people. I have had this disease for 8 years and am doing well after 2 bypass surgeries. Like everyone, i too am scared about what the future holds as i am a mother to four children whom i live for each and every day. I do things with them all the time just so they know that i was always there for them when they needed me. God help them when i pass away. My 15 year old daughter has been with me through everything and has seen stuff that she shouldn't have to but copes extremely well for someone her age. god it suxs having to fight for life every day. All i know is that if i wake up every morning, i know its going to be a good day!!! Good luck and god bless to all visiting this website.
kym <sleepy.71@hotmail.com>
perth, wa australia
Monday, March 02, 2009 at 08:50:28 (EST)

Hi all... my son have been diogonized with moyamoya.. unfortunately the surgery is not availbe in my country (maldives) please donate for my son.. chk this blog i have made http://alizayyan.blogspot.com/
Mohmed Marzooq <marzouq69@hotmail.com>
Maldives
Thursday, February 26, 2009 at 12:48:54 (EST)

HI everyone. I recently learned about Moyamoya from another adoptive mom of a Chinese child. My daughter, also adopted from China, now almost 6 y/o, has been having symptoms similar to Moyamoya for 2 years, but has been diagnosed as having migraine w/"episodes". I am now wondering if this isn't a misdiagnosis. I'm contacting her ped neuro with moyamoya info today and am hoping that he takes me seriously. I also hope it is not what my dear daughter has, but the sypmtoms are too frighteningly familiar for me to ignore.
Jennifer <yunnanbaby@gmail.com>
Indianapolis, IN USA
Thursday, February 26, 2009 at 10:43:32 (EST)

Hi !! I have just discovered this website and have had moyamoya for six years and i am still here!! Had a good surgeon i feel!!! great website. god bless abd good luck to all who have got this disease xx kym from perth WA AUSTRALIA.
kym <sleepy.71@hotmail.com>
perth, wa australia
Thursday, February 26, 2009 at 08:08:14 (EST)

Hi,my name is Lori and my brother John was diagnosed with moyamoya yesterday. He is 31 years old and woke up Monday morning and couldn't feel his right arm and could not talk. When the hospital did the first MRI they came back with the results and said that there was white matter that they could not determine, the second came back and they concluded that it was moyamoya. I am wondering whether we should get a second opinion? I am so scared!
Lori Eustis <lorieustis@hotmail.com>
Lawndale, Il USA
Wednesday, February 25, 2009 at 10:22:46 (EST)

I am a 28 year old female and have been diagnosed with moyamoya,unfortunetly I found out after I had a stroke, I am having surgery on boyh sides of my brain in March.
Jennifer Moody <caspermj@aol.com>
Union, OH USA
Tuesday, February 24, 2009 at 23:46:22 (EST)

My 31 yr old neice has been diagnosed with MM. It has taken several years to get to this diagnosis. She had a stent put in last summer and was scheduled for EC-IC bypass surgery last monday, unfortuately she had another stoke on Thursday befor her scheduled surgery, and surgery was put off for another 3 to 4 weeks. We have an excellent stoke treatment center at Methodist Hospital in Indianapolis and everyone is very helpful, but this very scary for everyone. And I am amazed to see how many people this rare disease affects.
Denise <queend1118@aol.com>
Muncie, IN USA
Tuesday, February 24, 2009 at 14:53:14 (EST)

howevever did they discover this unusual disease?? it really sux!!!!!
kym <sleepy.71@hotmail.com>
mandurah, ma australia
Sunday, February 22, 2009 at 17:13:22 (EST)

Ladies and Gentlemen, We are the parents of a 2.5 year old baby girl who has recently been diagnosed with moyamoya disease. We come from Poland where the incidence of moyamoya disease is extremely rare (the very diagnostication of the diseases took more than 2 months) and there are no specialistic clinics that would make attempts for treatments of such cases. In Poland, our daughter Hanna does not have a ghost of a chance to be recovered. The baby girl experienced two ischemic apoplectic strokes within a period of a month (the first-one occurred in the middle of December and it was an ischemic stroke of the left cerebral hemisphere with a considerable degree right-handed hemiparesis and a motor aphasia; the second-one occurred in January and it was the ischemic stroke of the right hemisphere. Only then, the physicians determined the reasons for them a carotid artery stenosis but since yesterday they did not know it was caused by the progression of moyamoya disease. The baby girl did not have earlier any serious diseases nor she haven t revealed any worrying signs. At the time being the girls is being hospitalized but this hospital does not treat such cases. She is conscious but she has a tetraparesis, she can not speak, she is fed with stomach tube. We know that in USA there are clinics specialize in treatment of subjects with moyamoya. We kindly request for an information if there is any chance to treat our little daughter at such clinic. We will appreciate any information, including this-one concerning the cost of such a treatment. Nobody is able to help our baby in Poland. Nobody will take attempts for operation. Nobody knows how to manage in such cases. We are kindly asking for your help. Ewa and Piotr Lewko The parents of the girl suffering from moyamoya
Ewa Lewko <kinga@visionjobs.com>
Olawa, Poland
Monday, February 16, 2009 at 04:57:18 (EST)

My bro Ajay Shah is now in COMA after being operated for Moya moya disease at the Appolo Hospital, West Bengal(India)- need immediate help as to what is the next course of action. It is evident that the neurosurgeons have messed it up. Please advise.
anselm <ans_men@yahoo.com>
USA
Monday, February 16, 2009 at 03:24:42 (EST)

hello there, my name is mike. i was diagnosed with moyamoya back in aug 2008. my main reason for telling my story now is that you need to know just how easy it is to be misdiagnosed. just a little quick background. i am 43 yrs old, never been sick a day in my life, other than broken bones. i live in the orlando florida area where there are many, many great hospitals and surgeons, but was still misdiagnosed. back on fathers day, june 2008 is when i had my first mini stroke/seizure. i literally felt a hop in my head, and that was it, i was down for the count. i didn't know how long i was down for, but when i started coming around, i can remember not being able to move everything, and i was dizzy as hell. well, needless to say i found myself in the local hospital for the next two days undergoing test. i kept telling them that i was having trouble talking on my left side, i was partially blind in my left eye, and i had paralysis in my left arm and leg. they ran a ct scan WITHOUT PERFUSSION, (remember that), and a battery of heart test. by the end of the second day, they came in and said they had figured out what was wrong with me. they said i had crystals built up on my eardrum. they gave me some valium and sent me home. my wife kept insisting that they needed to perform an mri, and a mra. they looked at her and said, (oh, we have seen this at least three times this month alone. he will be fine, just take hime home and give it time.) well, we did go home, but thank god my wife is what you would call a persistent type person when she knows she is right, and something is wrong. we started by going to an ent doctor, who within less than 5 minutes of seeing me, told us that it wasn't the crystal build up, but it was neurological. i had a battery of test that confirmed this. veng test, eeg test, all abnormal. my primary care physician, who is the best, never gave up on me, because she could also tell that something major was wrong, she sent me i for an MRI and an MRA (with perfussion). she called me and told me that she had found something bad and was going to close down for the day to take all my records to a nerosurgeon group she knew. they agreed to see me on aug 5, 08. well, i didn't make it that long before having my second ministroke/seizure. that was on aug 1, 08. i spent 5 days in the hospital, once again i was put through a battery of test, but they did finally diagnos me with moyamoya disease. they explained what they could to me about the disease, and then told me that there was nothing else they could do for me. needless to say, my wife and i were floored. this is the 21st century, you have to be able to do something? once again, they said they were sorry. so thats when we checked out of the hospital, and they were still wanting to run more test on me (i couldn't figure that one out). we went home, got on the internet, typed in a google search on moyamoya disease, and that is where we found this god sent website. we found alot of answers to our questions. i've even been able to make some new friends thru email here. most of all, i found a surgeon ( dr stephen lewis )at shands hospital in gainsville, fl who was not only well known in treating the disease, but performed my first surgery in aug 2008. it has been 5 months now since the surgey. i haven't had anymore ministrokes, but i have had some problems with seizures. the medication does help, but it did take me awhile to get to the right one and the right dosage, so please don't get discouraged if you are having seizure, this can take awhile. my surgery went great (or at least thats what they tell me), it wasn't as painfull as i thought it would be, but maybe thats because of the paralysis i already had. i was only in the hospital for 5 days. i was able to walk on the 2nd day. you go thru the normal black and blue from the surgery, and i can't say there is no pain, because i would be lying, but it was all worth it. i felt alot better within a couple of days, and have continued to feel pretty good up to about a month ago. i think it is almost time for the other side to be done. i believe this due to the amount of dizziness, and seizure activity i am starting to have again. but it's ok, i'm ready to do it all over again if thats what needs to be done. i'm not afraid, and neither should you. just do yourself a favor, and please do your homework on your surgeon. don't be afraid to ask questions, and demand credentials. please pray for all the people out there who are not getting proper treatment. i personally have spoken with some of them. it's a shame. please email me if i can help answer any question you may have, or at least direct you in a good direction to get them answered. you may just want to talk, thats ok too. thanks for reading my story, and wish me luck, as i will for all of you. thanks again, mike
mike <bigdaddybb@cfl.rr.com>
longwood, fl USA
Tuesday, February 03, 2009 at 13:18:27 (EST)

My daughter was diagnosed with Moyamoya Jan 27th 2007. She has had two MCA-STA bypass surgeries followed by three brain surgeries due to complications caused by infections. She is just 22 and struggles with her future, she feels off track from where she thinks she should be. The past two weeks she has been retested, the whole shebang, and an angiogram last Friday. Bad news, reduced blood flow in both sides. Tomorrow we go to talk to the Neurosurgion about options she has. She thinks the Doctor will say more surgery. We live in Washington state and wonder about other MM people. Please contact us if you are able, thanks.
Kat <kitkat5157@msn.com>
Kent, WA USA
Tuesday, February 03, 2009 at 05:24:41 (EST)

My name is Taly, and my 22 month old son has Moyamoya. I was looking for information about the surgery done to treat this and also information about how children with this syndrome do as they get older. If any one has any information PLEASE pass it on to me it would be GREATLY appreciated. My email address is Talybama@yahoo.com.
Taly <Talybama@yahoo.com>
Beaver, OK USA
Tuesday, January 27, 2009 at 17:16:16 (EST)

My son who is 21 months old have been digonized with moyamoya disease. I am from the republic of maldives and as we are not from a rich background we cannot really afford to visit Stanford or USA to perform this surgery. Non of the hospital in this region cannot perform this. Can any of you give me an advice or help me to get funds. Thnx Regards
Mohmed Marzooq <marzouq69@hotmail.com>
Maldives
Saturday, January 24, 2009 at 03:22:52 (EST)

35yr old is when i was {diaois} with moyamoya
dorothy <benice2me41@yahoo.com>
lexington, ky USA
Wednesday, January 21, 2009 at 14:08:21 (EST)

To all those whose local doctors have told you have no hope and surgery is not an option, get a second, third or fourth opinion. By doing so, you may just find the one doctor who can help you when others are unwilling or unable. Moyamoya is such a rare disease that some "specialists" don't really know enough about the treatment options and prognosis. What makes sense for one patient may not make sense for another, which is why you need a doctor who has routinely dealt with moyamoya. Question your doctors on exactly what experience they have with other patients who have the disease, and find out what their success rate is. After all, there's a reason they call it "practicing medicine."
Kimberly Sanberg
Mission Viejo, CA USA
Saturday, January 10, 2009 at 01:20:11 (EST)

My 7 year old daughter has moyamoya and I am looking for info. on if children with moyamoya seem to get sick easier or more often than other children? and also, if there are any reported cases of REYES Syndrome with moyamoya? our doctors said we have to watch for Reyes since she takes aspirin everyday. I also want to know any other medical conditions that might come with having moyamoya!! Thanks!!
Rebecca <rebeccaledkins@yahoo.com>
Richmond, Tx USA
Wednesday, January 07, 2009 at 14:17:29 (EST)

Hi my name is Angie and I am 42. I had a stroke in may of 2008. I was diagnosed with moyamoya while in the Hospital. I thank the neurologist who was persistant on finding out why I had the stroke. Dr. Marcus refered me to a neuro surgeon at the University of Michigan in Ann Arbor. Thanks to Dr. Thompson he did an EDSA on my right side Dec. 5, 2008. since surgery a month ago I am doing pretty well. I am taking plavix and keppra since surgery. I am scared right now wondering if I will be able to drive again and be around for my children. Just wondering if any other adults are feeling like I am?
angie <vampirelady2006@comcast.net>
river rouge, mi USA
Tuesday, January 06, 2009 at 18:47:12 (EST)

My name is Lynette, and our 7-year old son, Rhylley, was diagnosed with MM about 2 years ago. I originally posted a message back then & now wanted to thank everyone for all the help and advice & support. When he was 5, Rhylley started getting very bad headaches that always ended up with him vomiting...After numerous MRI's and one angiogram, he was diagnosed. He had EDAS on the left side in February 08 and so far is doing great. He takes an aspirin a day...Other than the scar--that I might add you have to really hunt for!--you would never know he has this awful disease. We go again next month for an MRI...Kudos and many, many thanks to Dr. Keating of Children's Hosp here in DC. He was absolutely awesome! As was the staff at Children's. I feel blessed to have these people in our lives to help through such a hard time. I do have a question though...Is there anyone out there that the doctors have mentioned genetic testing to? Rhylley was born with a few non-related (supposedly) birth defects (none of which compare at all to the MM) and they feel there might be a connection. But in the same breath, they say the testing is very expensive, as there's only one place in Germany that does it. (?!) When we asked why do the test, they say what about Rhylley's future, if and/or when he should want children of his own. My husband and I are not sure what to do, and were wondering if anyone else has any ideas... Again, thanks to all those who have already answered a million questions and calmed a million fears!
Lynette <lgochez@wm.com>
Hagerstown, MD USA
Monday, January 05, 2009 at 10:10:00 (EST)

I had a stroke in 1998 age (30) & diagnosed with Moyamoya disease (35) yrs old, just want to say this is a great web site that has been made.
Kelly Johnson <Kelkeltic@yahoo.com>
Simpsonville, SC USA
Sunday, January 04, 2009 at 20:05:07 (EST)

our son is 37 and we just was told that he has moyamoya--we have never heard of it.His dr.(Hartord Hospital ,Hartford-Ct)said no surgery would make him better--yet I look at pictures on this site and everyone is either up or seem to know there where abouts. my son is in a cloud--please help anybody PLEASE
Bea Melino <bmelino@hotmail.com>
Ivoryton, CT USA
Sunday, January 04, 2009 at 13:12:30 (EST)

Hi Everyone. my cousin's wife who is in her 30s had her first stroke around 8 months ago. We are Persian and they live in Iran . After being in hospital for a couple of days , she came back home but in a very bad mood. She could walk hardly and always many people were around her to take care of her . Then she began to speak and got better until 1 month ago when she had her 2nd stroke . Now her husband and her 2 daughters and all our relatives are sad and worried about her . The reason I am here is to ask some questions her husband asked me to search .Cause they don't speak English and I am here to help them find some good information.His quesions are : 1- Is there any MoyaMoya treatment in which the patient is cured and controlled ONLY with drugs ( no operation ) ? 2- Which countries in Asia/Europe have better successful results as for operations being done on the patients ? We appreciate any information and help from the nice people all around the world. Thanks a lot Javad
Javad Zare <javadzare2020@yahoo.com>
Kuala Lumpur, Malaysia
Sunday, January 04, 2009 at 05:10:25 (EST)

Our Son (7yrs) has been diagnosed probable MMD in Dec first week 2008. His right hand and feet were weak initailly but now due to physiotherapy it has become normal 80%. His speech also has come back 50%. He is on ecospirin/valporin. Local neuro logists say as collatorals are not yet formed, surgery is not advisable immediately. Is this correct? We have contacted Dr.Steinberg, not received any response as yet. Response requested from other families on when does the speech come back completely? Does comprehensiveness get affected also? Is MMD and MMD syndrome different? Any doctors names in India/Singapore suggested for treatment? In anxiety - Parents 9
Bir <vaish56@hotmail.com>
Delhi, India
Saturday, January 03, 2009 at 22:35:16 (EST)

Hi,whoever u are.My son Elvis 9 months old has had two strokes in one month both left and right sides of the brain.Is he too young to operate,is it to late.They say its moya but complicated
james beirne <jamie.beirne@orange.fr>
vallauris, france
Monday, December 29, 2008 at 16:17:03 (EST)

Hi everyone. I am a single mother of an almost 13 year old daughter who was diagnosed with MM at the age of 15 months. She has suffered from 10 strokes and had stopped having seizures. As she has gotten older though and started puberty the seizures have returned. We have looked into neurosurgery, but the neurosurgeon said that everythinghe could have done for her her body had already done. She has frontal lobe damage on both the right and left sides and i was told she would never smile, laugh, or be able to recognize anyone and that she would most likely be a vegetable. Well she has proven her doctor wrong so many times. He is truly amazed at the progress she has made and she recognized him after not seeing him for 5 years. So many times they have no idea what is really going to happen. She has the best smile and laughs all the time. We may deal with the physical disablities but the spirit and will are strong.
Jeanette Pierce
Norfolk, VA USA
Sunday, December 28, 2008 at 23:39:36 (EST)

My mother was diagnosed, at the age of 38, with moyamoya during a time when no one knew what it was. Her doctor sent her to mayo clinic, and they gave her 6 months to live, that was 24 years ago and she is still here. although not able to have the surgeries to help, we manage hers' with numerous amounts of medications. we now go to Barnes in St louis and it was a relief to go to a hospital where we do not have to explain to the doctor what moya moya is, they know it there!! my family has been treated like guinea pigs in the last 24 years learning what medications will and will not work for my mothers condition. but my mother has taken it all in stride, she fights everyday to get better, some days are better than others, and we cherish the better days because they are few and far between. my mothers first major stroke came in 1989 with the arrival of the youngest member of our family, she wasnt going to let some "stupid disease" her words, keep her from her baby, even though the doctors told her they didnt know what would happen to her, she stroked on the table, eventually she recovered, and never regretted her desision to keep the baby, my younger brother is a very healthy 20 year old. it was difficult for my family to grow up with a mom who has moyamoya, my friends never understood why she was ill all the time, and we were always frightened. A sneeze can kill our mom, its scary to think that when you hear her sneeze, it might be her last moment, but that was the childhood we had, and as dark as it was i cherish the time i get to spend with my mother every day, because it might be the last. As a result of her advanced case of moyamoya my mother has to be very carefull when having other medical procedures, just because you have one bad medical problem doesnt mean you cant have more... due to a medication she had to have her teeth extracted, and going under cased her to stroke, she coded on the table, but thankfully they were able to bring her back to us. and we struggle everyday to get her back to where she was, just but 12 months ago. i am sure that if the medical community was as aware of moyamoya then as it is now, things for our family would be different, but my mother is proud that the things they learned from her helped pave the road for what little help can be given today.
Carol Wachtel <carolwachtel@gmail.com>
Springfield, IL USA
Sunday, December 28, 2008 at 15:39:38 (EST)

My very good friend was just given the DX of Moya Moya. She is 35 and has an 8 year old daughter. She is a single Mom and is very concerned about the long term outlook. She is being seen to find out if she is a candidate for 1 of 2 surgeries and is just unsure of what is to come.
Janine <janinecjc@yahoo.com>
USA
Tuesday, December 23, 2008 at 11:13:39 (EST)

my daughter has moyamoya like vessels. she is 2.5 in the seattle area. She also has PHACE syndrome and has a pacemaker making MRIMRA impossible at his time. She has a complicated health history. She had Doppler every 3 mths and now her dr s have told me to start consolations with pediatric neurosurgeons. Due to my daughter complicated health history I am hoping to consult with more than one surgeon and would greatly appreciate some names of doctors who have worked with specialized cases. please email if you can help wyndilee@yahoo.com What is PHACE Posteria Fossa malformation. Izabell does not have this Hemangioma The external hemangiomas responded well to steroids and laser treatments. The hemangiomas on her ear drum have caused some hearing loss. She has hemangiomas throughout her neck, nose airway and saliva glands. She was on a N-G feeding tube for two months before she was strong enough to drink from a bottle. Izabell was not able to swallow thin liquids and required all liquids to be thickened with special gels to protect her from aspirating the fluids into her lungs. This was needed for about 2 years. She has had three surgeries to remove the hemangiomas from her airway. She also had surgery to remove some of the internal hemangiomas in her nose because they separated and closed off her nasal septum making it difficult to breath. Not all of the internal hemangiomas could be removed and the scar tissue from the surgeries also narrow her small airway. Her airway is very narrow and will be monitored. She might need reconstructive surgeries to help rebuild her airway in the future but we are hoping that as she grows her airway with will also grow and heal. She has had three laser treatments on her superficial hemangiomas and has healed well after each one. She had sleep apnea and slept with a pulse ox monitor on for about a year. Arterial Defects Izabell has many arterial and venous defects. She has very narrow and twisted arteries which increase her risk for stroke and aneurysm . She is being followed by neurology and is on aspirin daily to help lower her risk. She is followed with Doppler imaging at this time she is going every 3 months because she had some recent changes in her vessels .She is followed by neurology because of her arterial defects and venous pooling. We are now starting to consult with surgeons at our Drs suggetion. Cardiac Defects Izaebll was born with an interrupted aortic arch, and a large ventricle septic defect. When she was six weeks old she was admitted to the hospital with severe congestive heart failure and underwent open heart surgery to repair these defects. She was in the ICU for 6 weeks. She had an open chest for a week to take the pressure of her heart and heal her body heal before her chest could be closed after surgery. She got complete heart block from the surgery and now has a pacemaker. She has also had two heart catheter surgeries. She has a narrow ventricular outflow track and mitral valve prolapse and Aortic valve regurgitation that is being closely monitored by her care team. She will need surgery every 4-5 years to replace her pacemaker. She is likely to need another OHS in her adult years to either repair or replace the valves. She will also need a stent placed when she is older to open her arch more. She has a damaged vocal cord from the breathing tubes used during surgery but has regained most of her voice. Eye Anomalies Izabell is far sighted and has hemangiomas around her eyes Izabell has Hip Dysplasia Izabell has neuromuscular scoliosis.
wyndi <wyndilee@yahoo.com>
seattle, wa USA
Sunday, December 21, 2008 at 18:23:38 (EST)

I jst found out i have moyamoya bt found DR. know very little about this and arent sure what to do for me after I had my stroke in october, I now suffer from exterme headaches .any information on a Dr. in Texas would be greatly apperciated. I want to live I have 5 wonderful children and a great husband we are all really scared at thi point. Thanks for any information you ca provide. Carman
Carman Doan <mdoansr@yahoo.com>
waco, tx USA
Sunday, December 21, 2008 at 15:06:52 (EST)

Hi there, my mum aged 37 has had MM for a year Iam just a 13 year old girl and it is putting a strain on my family here, it is 6.20pm here and already my mum has had to be put to bed for the night and my dad isnt home from work yet. my dad is brilliant he just makes sure everything is done but then whenever i try to help with it becomes such a big deal for everyone because to them I cant help becuse i am only a 13 year old who is just a pain and i wish i could do more to help out and was basically wondering how all the family members help without getting there heads bitten off all the time (as you can tell my mum is way to proud to let people help) If you can email me advice that would be fab ! thanks
wishin it could all go away <charlotterigby@btinternet.com>
berkshire, UK
Thursday, December 18, 2008 at 13:23:36 (EST)

Please if anyone knows of a neurosurgeon close to me that does the bypass surgery I would love the information. I had problems with my insurance paying for my last 2 surgeries. I will probally need another. I feel sure the hospital wont approve me again. I have MM and the right side of my head isnt flowing right. I go back to the neurosurgeon december 11, 2008 in Ohio. Thank you
Kim Cobb <wolfchick_kim@yahoo.com>
glasgow, KY USA
Tuesday, December 02, 2008 at 14:29:19 (EST)

Hey my name is amber,im 20 years old, i was recently diagnosed with moya moya about 2 1/2 weeks ago. Which was the same day i had actually heard of the disease. It came as a shock, but me and my family are taking it pretty well, i'm looking forward to the surgery in about 2 weeks, so i can start a new chapter in my life. My thoughts and prayers are with you all. Just a reminder aall you parents out there, if your child is suffering from this rare disease and you start to get overwhelmed, stop and take a deep breath, everything is gonna be ok. I think i've told my mom that alot lately :] Good luck to you all.
Amber Reeves <areeves06@aol.com>
Austin, TX USA
Sunday, November 30, 2008 at 17:56:12 (EST)

Well I am here MoyaMoya.com.. Glad to find the site and all the great stories below. I have a good story to tell on this very rare condition. My wife a very healthy 27year old had our second child in 2005. Pregnancy was normal up to the last trimester. She had a stroke, which left her with left side weakness and slight speech deficits. Our daughter was taken via c-section very healthy! My wife was then sent to numerous tests MRI s, MRA s, CT Scans the list goes on and on. She was eventually released, and the cause of her stroke at the time was caused by stress of pregnancy. She recovered well over the next month or so. Since this time she has been having reoccurring episodes, typically about the same time each month during her menstrual cycle. The episodes where TIA s, that left her basically paralyzed on her left side arm,leg. Her occurrences not always occurred during her menstrual cycle, at times it came if she over exerted herself or just sitting on the couch. They usually started with pain in her shoulder, chest moving up to her jaw followed by left side deficits. She s tough and recovered quickly from these occurrences. She started seeing a neurologist regularly since these episodes started occurring. We ve had many diagnoses during each and grew frustrated after years of trying many different types of medicines. We eventually switched to a new neurologist after a pretty significant TIA in April of 08. I also started a second opinion during this time with the eCleveland clinic and highly recommend anyone to do this. A month went by and we started her on Lupron, basically shuts down her menstrual cycle. The neurologist backed us on this, since her issues typically cropped up at the same time each month. This was just a Band-Aid to a bigger underlying condition, which was yet to be diagnosed. The Lupron seemed to be working well; she made it a good two months with no further episodes. July came and she sustained another setback, same as the TIA in April. During this time more tests, which included a cerebral angiogram. Our neurologist was still trying to understand what was causing her conditions, mentioned briefly the word MoyaMoya . I took notes and did what most do and scoured the net for answers. Well I m here, after a little adjusting of the word! It was unreal, the symptoms of moyamoya and how much it coincided with my wife s condition over the past three years and life! At this time I knew we where getting closer to a cause. We got the results back from the eCleveland clinic and they concurred an underlying vascular condition, which could be causing this to occur. November 3rd another episode more chest, shoulder pain during this stay at the hospital she had a SPECT test completed. Still weak on her left side, we had a follow-up appointment with a neurosurgeon that specialized in MoyaMoya. He reviewed her history and recent tests, and concluded she has MoyaMoya on a Suzuki scale level between 3-4. We where relieved to find a cause to this, but where terrified with the fix. On November 25th, she underwent STA-MCA bypass it took about 4hrs to complete. She was released the next day and is currently in allot of pain but each day looking better and better. I am looking forward to being a part of this site and understanding this condition in better detail.
Kevin <kmace74@yahoo.com>
Brookville, IN USA
Saturday, November 29, 2008 at 15:19:32 (EST)

i am 37 and had a stroke in may of 08 but the doctors really didnt know what wa going on and on Sept 29 i had 2 strokes and was diagnosed oficially in Sept 08 with MMD. MY surgery date is 12-2-08. i am hoping this is the beginning of the end. i have God on my side. I am confident i will get my life back to somewhat normal. this site has really been a giant help!
Tim J Smith <timcup1996@hotmail.com>
Coway, SC USA
Monday, November 24, 2008 at 11:56:18 (EST)

I just turned 29 last month and was diagnosed with MMD 3 days ago. After months of severe headaches, dozens of tests and doctor's appointments I'm relieved to finally know what's going on up there. Like others I'd never heard of MMD, but I'm lucky to be in great care at UCLA Medica Center. Though I still need to have an angiogram they've told me surgery is fairly certain. Just hearing those words has been very difficult. DJ, thank you for creating and managing this site; it's wonderful. And thank you to everyone else for all the posts I see with warm, open offerings of support and sharing of stories. When Wikipedis tells you only "0.35 per 100,00" have MMD" you feel very alone. This site takes takes that away quite a bit.
CJ <JenniferDownUnder@gmail.com>
Long Beach, CA USA
Tuesday, November 18, 2008 at 05:52:54 (EST)

Hi Everyone, a quick update on William. He had his 6 month MRI/MRA a couple of weeks ago and it went well. The neuroradiologist here said everything looked good. We sent the CD to Dr. Scott at Boston Children's and he was very pleased with how everything looked and with William's recovery. We feel very blessed and very lucky that he has done so well. We will be going to Boston in June for a one year arteriogram that will really tell us how things are going. Fortunately, William has had no recurance of the chorea and no strokes at all. He and his dad are riding bike trails almost every weekend! What a great kid I have! Happy Thanksgiving and Happy Holidays to everyone.
Marie <dochenry@charter.net>
Greer, SC USA
Sunday, November 16, 2008 at 16:40:58 (EST)

This web-page is a God-send! Thanks to all of you who e-mailed me & told me to get all my records to Dr. Steinberg. I finally heard 2 days ago that he looked at my films & records, diagnosed MMD & has already scheduled my 2 surgeries for mid-January! I am so grateful to all of you who have gone before me & prepared the way as I navigate my way thru this. Thanks for all your help. I'll keep you posted!
Melinda Bloom <melinda_bloom@yahoo.com>
Estes Park, CO USA
Monday, November 10, 2008 at 00:48:17 (EST)

My mother, a caucasion female in her 60's, had a stroke on 12 Oct. The MRI diagnosis revealed it was due to MoyaMoya. In what little there is out there about it, it's surprising she survived 2 childbirths. She's recovering well. Have any children of adult sufferers decided to have an MRI to see if they inherited it? Just wondering if I want to, as the only treatment is surgery.
David Price <dmprice@twcny.rr.com>
Syracuse, NY USA
Wednesday, November 05, 2008 at 19:16:24 (EST)

Aloha from the Big Island i'm one of the few people that foundout that they have this rare disease on this Island, when i first foundout that i have MM i was already bleeding in my brain for a few day doctor's did not run any test on me at the time-so by the time they foundout what i had i had to be transfered to another island on Oahu there they were able to tell my parents that i have this disorder-the doctor had to do research to finout what could be done-for me i had the 8 burrows holes on the rop of my head. It was an 4 hour surgery-which you can't even tell i had my hair hides the scar but i'm reminded at times when i do rub my head-but i would rather have them then have strokes-but with all of this i did suffer a stroke it caused my left-side to go numb, after the surgery was done i had to regain my strength on my left-side, but unfortantly all of my nerves did not return. so i now have been recovering for the past 2and half years it has not been easy, for me i had to learn eveything all over again(i was left-handed).So if my experince can help anyone in some of the answers that you need help in -i'll be more then glade to help, right now i think that i'm one of the few that foundout that they have this disease hard way so if it can help anyone please feel free to contact me i will help in anyway i can! MUCH LOVE AND ALOHA! to all the famlies and people that are suffering from this rare disorder!
Sharmaene Yeaman <sharsky002@yahoo.com>
Hilo, Hi USA
Sunday, November 02, 2008 at 14:54:57 (EST)

I'm a nursing student. I've recentley been charged with caring for a patient that has MM. I've never heard of it and when asking staff about this gentlemans' condition, NOONE could tell me anything. So here I am. Trying to learn. This WebSite is so far the best regarding information to help me understand what this disease is. Thank you fo sharing yor story.
Brenda Wright <orion4881@netzero.com>
Rindge, NH USA
Wednesday, October 22, 2008 at 10:56:12 (EDT)

DJ & ALL- Hi DJ it's Cindy Hill again. I was diagnosed in 2005 with MN. Ihad by-lateral bypasses in the same year. 3 months apart due to an infectionn on the first side operated on. My Dr. is DR. FADI CHARBEL at UIC iN Chicago, IL. Anyway, finally had 2nd bpass in December of 05. Went back to work part-time abput a month after each surgery then gradually went up to full-time. 2 years after original surgery I had a heartattack. The DRS. did an angiogram and found a closed artery of the heart,so they put a stent in. The drs. said this closed artery is due to the MM. Recently I had another episode of the heart and the dame artery is closed only in a different part of the artery, so they put anoh=ther stent in that very same artery. When they did the angiogram my neurosurgeon and cardivascular surgeons were there. Apparently both the bypasses are now closed and the "regular blood flow"is aflowin. Has anyone elses bypasses closed in such a short period of time. Are they supposed to close? Please e-mail me with some info. I didn't ask questions and now could kick myself. Al were just happy as clams about how I was feeling. THANKS!!!!!!!! CINDY
CINDY HILL <Chill52003@yahoo.com>
VALPARAISO, IN USA
Monday, October 20, 2008 at 14:56:53 (EDT)

Hi there! Ten years ago, at age 45, I went to a neurologist for chronic migraines. She did an MRI and found that I had had a stroke at birth. The radiologist said moyamoya. The neurologist didn't know very much about MM, so ruled out MM because I had 3 children & she wrongly said no one would live thru a pregnancy with this disease. Since then, I have had 4 more MRI's & MRA's, all confirming the MM diagnosis. I have a weakness on the left side that is getting worse, plus a numbness in the back of my tongue & throat. A neurologist today saw my latest scan & announced right away that she has never had a MM patient & can't help me! So now what? She is referring me to University Hospital in Denver, but I still have many questions. Where do I go in CO?
Melinda Bloom <melinda_bloom@yahoo.com>
Estes Park, CO USA
Tuesday, October 14, 2008 at 00:47:23 (EDT)

Last May my mother died from Moyamoya. She had a major bleed that ended her life. I'm here trying to understand why she lived with this and doctors didn't do anything about her disease they pretty much lead her to believe that this was her fate.
Lori <lbelo1@hotmail.com>
Muscatine, IA USA
Thursday, October 02, 2008 at 15:28:05 (EDT)

4 months post surgery (MMD) feeling great thanks to dr. Hanel at the mayo clinic jacksonville fl. (great team of DRS if you are looking). my prayers are with everyone on this sight, Please feel free to email me if you have questions or just need a little support. Vickie 44 mother of two. vickieanthony@yahoo.com.
Vickie Anthony <vickieanthony@yahoo.com>
melbourne, fl USA
Wednesday, October 01, 2008 at 15:35:52 (EDT)

Hi Claris, not sure of any institutions but our son had his surgery at newcastle general hospital by professor Mendelow who knew alot about moyamoya. Our son also had a xenon ct scan at cambridge hospital befor undergoing surgery. Nicola x
nicola
newcastle, uk
Tuesday, September 16, 2008 at 05:15:07 (EDT)

I have put my story on this site. I have answered other questions to try and help. I know moyamoya is scarey disease. I had my last surgery right side may 20,2008. I found out after a spec scan last monday 9/8/08, I have decreased reserve on my right side? can anybody tell me exactly what that means? My neuro surgeon and neurologist are going to talk. The only suggestion so far is a angiogram. Does this mean the surgery didnt help?
Kim Cobb <wolfchick_kim@yahoo.com>
glasgow, ky. USA
Monday, September 15, 2008 at 22:21:22 (EDT)

Coming to this web site was great! My Brother James is now 27 going on 28 years old and he to has Moya Moya He has had to brain surgers and 5 strokes and is still he with us today. Thanks to the Drs. at Duke
Judy Ford <jamslight@yahoo.com>
rome, ga USA
Monday, September 15, 2008 at 16:01:33 (EDT)

Hello! I just found out two days ago that I too have the Moyamoya disease. I am very glad to have found this web page and do not feel so alone. I just turned 26 on the fourth and am now living in Glasgow, Scotland because I am doing my Masters here at the University. It is difficult because I am so far away from home and I have no family here. However, I have been blessed with wonderful friends whom I do consider my "family". Does anyone know if there are other institutions outside of Stanford that specializes in the Moyamoya disease? I am so happy to have this network to talk to others with this disease and thank you so very much to the creator of this site.
Claris Diaz <cmondiaz@comcast.net>
Manteca, CA USA
Saturday, September 13, 2008 at 07:34:29 (EDT)

I was just diagnosed a couple of days ago with MoyaMoya. I had a stroke in April. I have overnighted my records to Dr Steinburg. I am just waiting for Dr. Steinburg to tell me to get on a plane. I am very scared and wondering what I did wrong in my life to deserve this. I am trying to be strong for my family. I have some questions if someone would be willing to answer them for me. God bless all of you that have been affected by this disease.
Amy <amyhopper1992@hotmail.com>
Columbia, MO USA
Thursday, September 11, 2008 at 15:39:39 (EDT)

Hi my name is Tracy I am here just to learn a little more about Moya Moya. I have a 36 year old cousin who has this he just recently had the two surgerys in Calafornia back in July he lives in Virgina just went to visit him he is doing wonderful.I have a friend name Diane she has been having these mini strokes and the list goes on I told her about my cousin Butch now she is going to be tested for this diease she is worried about how to pay for a surgery like this because they don't take medicare if anyone knows what we can do to raise money in our town of Greer S.C.for her procdure if she has the diease my cousin Butchs doctors are going to take a look at her tests his nurse says its very likely she has it because of years of health problems, If this is what it is there will be a sigh of relief but depressed thinking she will die because she can't afford this nesssary surgery please if you have any ideas for fund raising this diease needs to be more public to people.How many more people have to die of this unknown diease. THANKS FOR YOUR TIME. Tracy Bridwell
Tracy <tbridwell1722@charter.net>
USA
Thursday, September 11, 2008 at 14:58:00 (EDT)

I am a 62 year old caucasion female who has just been diagnosed with MoyaMoya Disease at the University of Michigan Hospital. I have been advised to "let's wait and see" because my symptoms are slight; i.e., TMI approximately 15 in the past year. I am afraid to wait and yet afraid to progress. My difficulties seem insignificant compared to so many I have read about in the Guest Book. I would like to get a second opinion from Dr. Gary Steinberg of Stanford University because it is my understanding he is the leading neurosurgeon in this field. Does anyone have his email address? Thank you and God Bless You All! Sherie
Sherie J. Wood <swood72546@aol.com>
Newberry, Mi. USA
Sunday, September 07, 2008 at 13:36:42 (EDT)

My best friend had brain surgery today. She has been suffering from stroke for a couple of years, she has now been diaginoted with Mayo Mayo which I know nothing about,but am learning.She has conplained for year since she was 20 stating to the doctors there something wrong with me I know I have an anerizism,years later she now is getting treatment.I'm deeply saddened,and scared.
Susan Matzdorff <suematzdorff@cox.net>
peoria, az USA
Friday, August 29, 2008 at 19:55:35 (EDT)

Briget, I have long hair it covers alot of the shaved part. If you have short hair your outta luck. Sorry. My surgeries took 5 hours each. The right side was worse then the left. Make sure you feel better before returning to work. I dont think they will let you in 2 weeks you said? They told me it takes about 6 to 8 weeks to recover from surgery. Good luck. write me my e-mail is on here. Anyone is welcome to write.
Kim <wolfchick_kim@yahoo.com>
glasgow, ky USA
Tuesday, August 26, 2008 at 19:08:10 (EDT)

Hi I am 32 yrs old and have been diagnosed with an advanced stage of moyamoya after suffering a major stroke a few weeks back. I will be having both surgeries with Dr. Gary K. Steinberg. The 1st will be on the 23rd of September and the 2nd on the 30th of September. I have a few questions and may have more as the surgeries grow closer. My first question is about how long does the surgery last? The 2nd question is will they shave my head for these surgeries? I will be returning to work 1 week after the recovery week how has returning to work 2 weeks after the surgery effected anyone? Thank you, -Bridge
Bridget
jersey city, nj USA
Monday, August 25, 2008 at 13:34:17 (EDT)

I was wondering if anyone has ever been diagnosed with MM with only one narrowing vein in the brain??? My neice has had a stroke and they can see the vein on the left side of the brain that is affected but want her to wait 3 weeks before they do another mri
Amanda Guillen <amanda_guillen@yahoo.com>
port lavaca, tx USA
Friday, August 22, 2008 at 23:38:03 (EDT)

hello gang new to this group but not to moyamoya,looking for someone with a similar story or someone to chat with,i have an 18 year old girl with moyamoya she has been thru chem,radiation 3 edas proceedures with 4 strokes ,now she is having vascular issues . she is falling for some unknown reason,not blacking out ,not seizures,all tests are fine,her feet just won't hold her up,it started outlasting a few mins ,,then started to last days..now into weeks numerous doctors have been consulted no one has an answer maybe a mom or dad does.. who knows ..very frustrated..but would love to hears fromother with moya moya either with similar espisodes or just anyone... its hard to find an answer
heather <hjnp19632@yahoo.ca>
halifax, ns canada
Thursday, August 21, 2008 at 19:33:09 (EDT)

After viewing this site I just want to thank you all for taking some of the anxiety away. My nephew Jimmy was diagnosed at age 6 with moyamoya in 1979 after having a stroke. At that time we were told he was one of 4 in the USA and it was mostly found in Asia. Surgery was discussed but lack of studies ruled it out. One year to the day his brother Kevin age 4 was diagnosed after having a stroke with right arm paralysis. Jimmy now in his mid 30's is scheduled for surgery because of diminished mental status due to narrowing of the vessels and decreaseing oxygen to the brain. I will pass all that I have read on to my sister and her husband and hopefully bring them some peace and confidence. Aunt Donna
Donna
Harrisville, RI USA
Monday, August 18, 2008 at 15:38:39 (EDT)

I was diagnosed with moyamoya this past Friday 08/18/08 and was told I would need the surgery in two parts. How long is the recovery time and is it painful recovery what should I expect during this time?
Candace <bbbwgoddess@aol.com>
Miami Gardens, FL USA
Sunday, August 17, 2008 at 23:42:54 (EDT)

Hi, my name is Veverly Edwards. My 14 year old daughter was diagnosed with MMD in October 2007, after having a major stroke to the right side of her brain. I had taken her to a nuerologist who had stated that she had a rare form of migraine headache that caused the temporary paralysis, about three days later she had a major stoke. On Oct. 9th 2007 my family was told that she was brain dead and that she wouldn't make it through the week. To make a long story short she is home and starting to walk again. She is enrolled for three classes this semester: Algebra, Englsih and Choir. I am trusting God for a full recovery.
Veverly Edwards <vevmye@aol.com>
Idaho Falls, ID USA
Saturday, August 16, 2008 at 15:29:13 (EDT)

Dear Dj, I just got in contact with Dr steinbergs office and they want to see my films to see if I am a candidate for the surgery. Thank you very much for the quick response. My doctors told me that there was nothing else they could do for me so they have me in hospice. It is so nice to finally hear a doctor say that a may have a life after all. thanks again. Denise
denise torsney <neecieree@yahoo.com>
sebring, fl USA
Wednesday, August 13, 2008 at 13:17:22 (EDT)

I am Kim I am 40 year old mother of 1 boy 10. I was told I had moyamoya in febuary 2008. I knew nothing about this. I had headaches earlier in life. They came back about 1 1/2 years ago. Over time they got worse and sudden. I got confused, numbeness on right side, flashing lights, tingling in my tongue, twitching in my eye. I went to Lousiville kentucky. University hosp. has a stroke team. They did a ct scan then mri, then a angiogram. Told me still on the table I had moyamoya. I freaked out of course. March 20, 2008 I went to cinncinati, Ohio. Dr. Mario Zuccerello, mayfield clinic, did a bypass on my left side first. I was out of the hosp. the next day felt good minor headaches. About 3 days later had a bad TIA, lost speech, head hurt, right arm numb. They sent me home after a Er visit. The TIA went aways after about 30 mintues all went to normal. Had the right done May 20, 2008. I did well. I have some spasms, and pain in the incisions. I have had some Iscemic problems. I take Lipitor, also Aggrenox. (is like plavix) I go to Louisville thursday august 12, 2008 for a check up. Diamox spec scan, and a EEG. PLease anyone with this disease e-mail me we can be friends exchange phone numbers. I have a question????? How long are people expected to live with moyamoya? How many corrective surgeries can you have? much love to all with this disease, Kim
Kim Cobb <wolfchick_kim@yahoo.com>
glasgow, ky USA
Wednesday, August 13, 2008 at 00:31:01 (EDT)

Hi I have just come across your web I have at the age of 46 been diagnosed with Moyamoya and am rather anxious about my condition. Here in south Africa we have not heard really of this and not many doctors either. I had a bad Angina attack and the cardiologist diagnosed me from a MRI and MRA
Susan Johnson <tabansi-okiciyapi@topmail.co.za>
Durban, South Africa
Sunday, August 10, 2008 at 12:50:17 (EDT)

I am havimg an angiogram tommrow to see if I have moya moya again. Had surgery 12 years ago for moya moya.
Glenn Rupert <glennpsu@aol.com>
Bloomsburg, PA USA
Wednesday, August 06, 2008 at 21:15:48 (EDT)

hi i'm ty, i was diagnosis in july 08 with MMD. i started having t.i.a.'s in dec of 07'. i dont know what to expect, so far i'm having mild headache. please keep me in your prayers as i keep you in mine. god bless
Ty <tyrone.rogers09@comcast.net>
nashville , tn USA
Wednesday, August 06, 2008 at 03:04:26 (EDT)

Hi, sorry to post this on here having trouble loging in to post on message board. Those of you who suffer headaches do you get blood spots on the back of your neck befor or during headache? Also when you do sports or any physical activity that causes you to sweat do you get blood spots on your body were your clothes rub your skin? Reason i ask my son does and the docs dont know an awful lot so wanted to get an idea of you guys befor monday, maybe he just needs his asprin lowered. Sam also has downs so not sure if this adds to the factor?? Thank-you xxx
nicky <martyandnicky@talktalk.net>
newcastle, Uk
Saturday, August 02, 2008 at 10:56:20 (EDT)

Hi I am giving an update on my son Michael. They do not think that he has MoyaMoya. They think that it is a virus. However they can not treat it because they do not know what virus. So he will be on steroids for five days. Hopefully this will fix the problems he is having. Thank you all for your concern and prayers.
Michelle Freeman <micheleefree@gmail.com>
salem, OR USA
Wednesday, July 30, 2008 at 18:57:06 (EDT)

Hello my name is Grant and my wife has MMD.Her name is Trudy and she has a post on here. Dated May 2007. We live in New Zealand. She had hemorrhage in 2002. Wellington Neuorsurgeons diagnosed MMD. Like most Dr's they did not know anything about MMD. Although they were great I'm not sure they knew what to do. We were told Trudy was the only one in NZ with MM. It was through this website that we have found out alot about MM. This website also put us in touch with other MM people in NZ and Mr Andrew LAW of Auckland a specialist in MMD. Tonight Trudy showed me the message about Nic from Wellington who passed away last year and her son uplifted her degree. I remember reading this article in the Dompost. I took the article home as I knew she would want to read it. I also knew that this would make her sad and that dealing with this would be difficult. Wellington is 2 hours drive from here. We did not know Nic or her family and our heart goes out to them. Dealing with MMD is very trying for both her and myself. I love her and reading this article has made me think long and hard about how this disease can take someone suddenly. My professon has a super annuation plan. It has allowed me to draw from it and pay off our mortgage. If Trudy has not got long on this earth then all our time together is prescious. We have decided to do an OE to Jamaica. Thats where she says she wants to go. She has contacted Mr LAW who states that although there is no literature about longhaul flights he does not recommend it. So we are looking at alternatives to get there. We have a travel agent looking. Any suggestions welcome.
Grant <granttrudy@xtra.co.nz>
New Zealand
Sunday, July 27, 2008 at 07:04:25 (EDT)

Hello, I am not new on here. I have posted info a couple of times previously. But there is one more important information I would like to share with all of you out there. A few years ago because of this very website a woman contacted me and told me of a Dr. here in Nashville who specialized in MM. I went to him for a second opinion. Turned out I needed the surgery after all. If not for that woman contacting me and not this website I am sure I would not be here today. So I am very very grateful for her and to D.J. for creating this website in the first place. Second of all what I would like to say is people if your physician don't seem to know that much about MM please by all means go elsewhere and find another physician. Don't take the chance. My first surgery was 15 1/2 long in 2006. I had a EC/IC bypass and this last surgery was about 10 hours long and it was the same. I had complete faith in my doctor to pull me through..Him and God. That's what it takes though. A good Dr. Someone who is very experienced in MM. After this last surgery I told my husband If I passed away tomorrow it wasn't because my wonderful Dr. Mericle didn't do his best. Cause he certainly did. And what a great name for a dr. to have huh? And that really is his name by the way. Robert Mericle..take care and God Bless you all..
Tresa Overstreet <tj98809@bellsouth.net>
Nashville, Tn USA
Saturday, July 26, 2008 at 23:47:39 (EDT)

My wife Aisha was diagnosed with Moya Moya in 2006 and still having terrible headaches and weakness. Wondering if there are medications out there that could help with the headaches. Currently she is on hydrea and aspirin as she also has sickle cell disease. I pray for all you out there that Almighty God will make known to us medication that will cure or remedy this suffering that you are all facing. May the Angels come to your aid in your sleep. Please do not leave out traditional medicines there could be a cure. God bless you all. Keep the spirit and faith strong do not give up. For every hardship there is always relief.
Y.A.Kareem <yakareem@cyvotel.com>
Raymore, MO USA
Friday, July 25, 2008 at 04:37:30 (EDT)

Hi I am giving an update on my son Michael (my name is Michelle), we will find out what is to be be done for Michael on Tuesday and they will tell me for sure if it is Moya Moya.
Michelle Freeman <micheleefree@gmail.com>
salem, oR USA
Thursday, July 24, 2008 at 18:03:00 (EDT)

Aloha All, I'm new to the Moyamoya family, I am 41 year old female of Hawaiian, Chinese, Filipino and French decent, my first on sets where May 26th and 27th went to the Dr on May 28th and admitted to the ER after doing an MRI. Within 2 hours I was having a Angiogram and diagnosed with Moyamoya. I feel like one of the blessed ones, the Radilogist was also a Dr. at Standford (lives on Maui now) and knew the disease immediatly. July 1st we left for Stanford my surgery was set for Jully 9th, the surgery was was a success and we flew home on July 18th. I love this site, thank you for taking the time to set it up, I'd love to talk to anyone that had gone through the process. Please email mail me anytime. God Bless
Iwalani Borge <soccerohana@aol.com>
Kahului, HI USA
Thursday, July 24, 2008 at 02:38:21 (EDT)

Hi, I was diagnosed with MMD last year and went for STA-MCA for both sides. Both operations were successful. I want to share that it has been a year since the first op and I'm doing really well. My quality of life has improved and I have been asymptomatic. Prior to the op, i had multiple TIAs. It was one of the most difficult decisions I had to make and it was the best. I'm grateful to be alive and well today. Presently I'm living in Singapore. In the next month I'd be relocating to the United States of America! San Francisco. I'm more than happy to meet friends who might be interested in forming a support group for MMD. I'd be most willing to share my experiences in terms of my treatment and recovery. Please email me if you're keen. Keep the faith.
Winifred <ling.winifred@gmail.com>
Singapore
Wednesday, July 23, 2008 at 04:01:34 (EDT)

On the 7 day of MAY 2007 Velentaz Matthews was traumatized by the brain he has 15% brain damage and has half of a skull .Velentaz is heavely sedated with medications. His parent Catrina Matthews is not finacially stable enough in order to send him to the specialist that he needs.In regaurds will someone write back to let me know how are we able to know if Velentaz has Moya Moya if he dosent have the fundings .
Tarlesha Newberry
memphis, tn USA
Monday, July 21, 2008 at 12:45:29 (EDT)

Michelle - be sure your son has an angiogram in order to determine if he has moyamoya. If he does, research surgeons with experience dealing with this. Dr. Gary Steinberg at Stanford is the top one for sure - we are at Stanford now as my daughter (age 17) is having her surgeries. You need to push for answers - lots of doctors don't know this disease - but it is critical that you find one who does! You can't afford to be complacent with this disease...Laura
Laura <lbachman@aol.com>
Seattle, WA USA
Friday, July 18, 2008 at 01:31:49 (EDT)

My mom was diagnosed with MMD in 1978. She had a stroke due to me being born and was not correctly diagnosed until two years later due to no one knowing about this disease. She has some disablilty left over after her surgery.
Stacy <methos99207@yahoo.com>
spokane, wa USA
Thursday, July 17, 2008 at 17:10:13 (EDT)

Hi, my name is Michelle. My son has recently had two strokes with in two weeks of each other. They believe that it is Moya Moya, but they can not be sure because they believe that he is in the early stages. The only thing that they can do is give Him blood thiner and hope he does not have another one. My sons name is Michael and we will know soon if he for sure has Moya Moya. He is in rehab right now recovering from the last stroke which caused loss of right arm function, reading ability, right side not moving correctly, and inability to judge what he can and can't do. He is recovering well and they say that he should recover about 90% us of the right arm and 98% use of the right side. I would love to hear from others who has Moya Moya. Thank you
Michelle Freeman <micheleefree@gmail.com>
Salem, OR USA
Wednesday, July 16, 2008 at 14:23:38 (EDT)

I am 30 yrs old and was dx with Moya Moya in 2005 with this rare find on an MRI. I have no sx and have never needed surgery. My doctors in Chicago repeat MRI/MRA yearly. I am doing my next one this Thursday. Hopefully no changes. I pray for eveyone out there that has sx and has or will go through surgery. The only possible bad link to my Moya Moya is that I gave birth to 2 stillborn babies. One in 2000 and the other in 12/07. They say it is not related to the Moya Moya, but there is no other reason for my losses. Thoughts and prayers and with everyone out there with Moya Moya. Keep in touch.
Shannon <DDSONS@ATT.NET>
MERRILLVILLE, IN USA
Tuesday, July 15, 2008 at 14:36:35 (EDT)

hello my name is tammie and my daughter is 8yrs she has had moyamoya she she was 12months she had her surgery right before she was 2 in all she has had 10 strokes she had her surgery by dr michael scott in boston he is the best and he also has the best bedside manners and his staff is also so great the hospital is also great we had to go back after savannh surgery for a check up i told dr scott we were going to put him in our suit case and bring him back with he was so great but her is the best news august the 12th savannah will be stroke and seizures free for 3 years praise god he is so good so i would tell any one to go and see dr scott we still call and talk to him and is staff thanks dr scott and to god we love you both if any one needs to talk feel free to email me anytime.the abbruzzos
tammie abbruzzo <bruzzermtjs@aol.com>
springville, al USA
Friday, July 11, 2008 at 19:12:46 (EDT)

Hi i was diagnosed with moya moya 3-4 months ago, doctors here had to look up condition on the internet. they seem to be looking @ me to have the answers and i dont!I had a brain operation @ the age of 14yrs in south africa, when i returned to england I brought all my medical records with me and my doctors have lost them, so now they have nothing to compare current scans too.I AM PETRIFIED need an understanding ear please.
catherine hattingh(kate) <katohattingh@live.co.uk>
swindon,wiltshire, England
Tuesday, July 08, 2008 at 06:58:43 (EDT)

My son, Abhi was just diagnosed with Moya Moya. He will be one year old on Thursday. He has already sufferred a big stroke on the left side if his braain that has affected his right limbs. The doctors however are amazed with how he is dealing with it. They say that chances to recover from such a stroke are much better for babies and that's good news. I have made an appointment with Dr. Michael Scott in Boston to see what he thinks and recommends. My wife had an AVM, which was successfully operated on in 2001 at Cloumbia Presbyterian in NY so we are a little used to this type of an illness. It seems that there are not many cases diagnosed or oeprated on for children as young as Abhi. I will keep everyone informed of the outcome. Ashish
Ashish <ashish929@aol.com>
Orlando, Fl USA
Monday, July 07, 2008 at 13:58:19 (EDT)

i just learned of this my twin girls have this it presented its self in my daughter krissy when she was 7years old she had a stroke it took drs 3weeks to figure this out just recently my daughter kirssy twin had her stroke an is under going surgy this month im really sadden by this
rose randle <redroses20010@yahoo.com>
reno , nv USA
Wednesday, July 02, 2008 at 23:20:00 (EDT)

In Memory of my beautiful baby girl,Kayla Danielle Taylor June 22, 1992 June 21, 1998. My heart goes out to anyone who has this disease or has a loved one who is suffering from this disease. I would love to talk to others and share our stories. Linda
Linda Gayle Bradley <brdln7@yahoo.com>
Ringgold, Ga USA
Wednesday, July 02, 2008 at 12:50:06 (EDT)

Dear DJ: Thank you very much for sharing your story. My nephew has been diagnosed with Moya Moya and will undergo bypass surgery a week from today in Mannheim, Germany. I have read most of the information now available on the internet, but your story has been most helpful because I now feel that my nephew has a very good chance to survive the surgery and live a good life thereafter. Thank you. Walburga
Walburga
USA
Wednesday, July 02, 2008 at 11:43:28 (EDT)

Hi im Rebecca Matthews and im 21 years old i was diagnosed with MoyaMoya when i was 18 years of age. I had my first stroke wilst at work and have had 3 more since but they say i cant have the opporation im now partly paralsed down my right side and it keeps getting worse, if there is any one with ideas as what to do please let me no through my e-mail address which is shineybox@yahoo.co.uk please help!
rebecca matthews <shineybox@yahoo.co.uk>
ilse of wight, ryde uk
Tuesday, July 01, 2008 at 12:18:12 (EDT)

My name is Amy and I am 36 years old and I had my first mild stroke in September of 2003 when I was 31. It was a schock and my family were all unsure of what it was. I was in the process of buying my first home. In fact I was having the inspector look at the home that evening with my realtor and I the night of the stroke. The episode only lasted a few seconds and there was no pain, just kind of a short paralization and everything went back to normal. I told my mother "I think I just had a stroke". We did not call the doctor because everything seemed fine and we were unsure. I continued on with buying the house and we closed that weekend. I noticed that my speech became impaired the days after the stroke and I called the doctor and it was determined that I had had a stroke because I had an mri done. I called my job and told my boss of the small stroke as soon as I found out it was a stroke. I really regret having done this, because I was let go very shortly after that. They said I was let go for other reasons, but I know in my heart it was because of the stroke. Over the years it has been determined that I have moyamoya. I have had several strokes and 2 brain surgeries. It has been a hard road though in figuring out and determining my diagnosis of Moyamoya. The neurologists at my clinics were unfamiliar with the condition and it took a long time to figure out why I was continuing to have strokes and come up with the correct diagnosis. I am glad that I have hooked up with Dr. Nussbaum my brain surgeon, he is a genius and is familiar with MoyaMoya. I have not worked for years and am still trying to get on SSDI. I have applied again and am hoping to get approved in October. If not I will appeal. I take an adult aspirin a day and am on lipitor for high cholesterol. What medicines do others take relating to their Moyamoya disease. At first my neurologists had me on plavix and baby aspirine but I discussed issues with that combo like bad bruises and heavy periods etc. Now im no longer on the plavix. I have not had a surgery for a couple of years. I will have another Mri/Mra scheluled to see how things progressing or not progressing very soon. Does this seem to be how others that have moyamoya are dealing with the disease, MRI's -mras checking on the progress of the brain. And brain vascular bypass surgery? That is my story in a nutshell. It is nice to read your stories as well. PS Does anyone get annoying sounds in their head, I call them blood noises.
Amy <oda69@netscape.net>
Minneapolis, MN USA
Monday, June 30, 2008 at 19:55:29 (EDT)

god bless everyone on this site and stay strong
sheryy gibbens <harleygirl939@yahoo.com>
north ridgeville, oh USA
Monday, June 30, 2008 at 11:03:52 (EDT)

We have joined the MMD circle. My daughter Katie (age 17)was diagnosed on June 10th, and is scheduled for bilateral surgery with Dr. Steinberg in mid-July. We feel very lucky that she got diagnosed relatively quickly, and now are counting down the days until the surgery process is over. Many thanks to this web site as it has helped us and our friends better understand this unique condition! Laura
Laura <lbachman3@aol.com>
Seattle, WA USA
Monday, June 30, 2008 at 10:20:19 (EDT)

Hello, My name is Wanda Ballard from Brookhaven, MS. My 20-year-old daughter, Emily, has Down Syndrome and has just been diagnosed with Moyamoya. Of course, just like most, we had never heard of this. Emily has been well all twenty years of her life and has always been high functioning, active, etc. Now, after a TIA, a seizure, then a stroke in the course of a week, we are now at Methodist Rehab after spending a week in the hospital, where she had all sorts of tests run to rule everything else out. She is doing wonderfully well, but we would love to have our hundreds of questions answered. Right now, Emily is taking Plavix and a baby aspirin, and we meet tomorrow with a neurologist here in Jackson, who is supposed to be the best there is in MS. I have a ton of questions. We haven't been told nearly enough, so I hope to get these questions answered tomorrow. I had a dr. today who did a hearing test tell me that he didn't know much about MM, but he didn't believe that surgery was a "compatible solution" with MM. And it's just so hard when in one breath someone says they don't know much, but then tells you something like that. So, any info and advice would be such a blessing. Emily has always worked so hard, and even through this has been the toughest patient ever. Thanks so much, Wanda Ballard
Wanda Ballard <JKBallard77@aol.com>
Brookhaven, MS USA
Friday, June 27, 2008 at 17:55:11 (EDT)

What a surprise! Moyamoya struck me a bit later in life (62). I suppose that I coasted along further than the other victims of MoyaMoya. No teletale alarms before my stroke, except for one incident in 2004 when I couldn't grasp several objects and slightly had a speech problem. This was for one night. I didn't give it another thought. Then when Hurricane Katrina struck New Orleans my blood pressure was affected, and I found out about it through a usual doctor visit. But the Moyamoya was a total surprise. I had run out of medication, and stroked. The neurosurgeon was the only one at the hospital who knew about this disease, thank the Lord. When she told me what I had and what it meant, a sinking feeling came over me. No talk of operations yet, but there is time.
Suzanne Galjour <suzgal@hotmail.live>
tyler, tx USA
Thursday, June 26, 2008 at 12:48:58 (EDT)

Hi Everyone, William is doing great. He finished his homebound school today and is all caught up. Now he can enjoy the rest of the summer without having school work hanging over him. His stitches finally finished disolving a couple of weeks ago so he can go swimming now and that was a very important milestone. So far, he has had no problems with his surgery or recovery. We are hopeful that the surgery will be successful and should know more in November when we have the MRI/MRA and in May when we go back to Boston for the follow-up arteriogram. We all feel like a huge weight has been lifted from our shoulders. Our best to everyone.
Marie <dochenry@charter.net>
Greer, SC USA
Wednesday, June 25, 2008 at 21:03:07 (EDT)

Hi my name is Jessie. And i have been told a couple weeks ago i have Moyamoya, i still have no idea what it is. So if anyone can tell me it would be great. I was also wondering if having it is Elegible for the make a wish foundation to make a wish. E-mail me and give me some info please =)
Jessie Robbins <jessie.robbins@mac.com>
canada
Wednesday, June 25, 2008 at 13:58:23 (EDT)

Hi Matt!! I am a Japanese from Japan and I am married to an American. My husband was more scared than I was because I was so healthy or never even had any headaches or any syptoms of MMD. We had never even heard of the disease until I was diagonosed. After my husband posted his entry on this site, several great people responded to my husband's entry and encouraged us to contact Dr. Steinberg's team. I had Direct By-Pass surgery performed by Dr. Steinberg on January 30th. Guess what? I went back to work part-time two months later and full time soon after. In Japan, there are several Moyamoya specialists now, but it is very important for you to find an very experienced doctor like Dr. Steinberg. It is very far away for us to go all the way to SF from Columbus, Ohio, but we are so happy with the results of my surgery now.
Yachiyo Hundley <yachiyohundley@hotmail.com>
Dublin, OH USA
Wednesday, June 25, 2008 at 02:04:24 (EDT)

Hello. My name is Matt and my wife has just been diagnosed with Moyamoya disease. Thank you very much for setting up this site! It has lots of good information. We are in Japan and my wife is Japanese so I'm sure she will be looking up information in Japanese too. Our doctor has said that my wife will probably need surgery. I have looked up some information on the web about surgical procedures but I was wondering if there are sometimes instances of complications arising from surgery. My wife is 35 and I read somewhere that children often get a better result from the surgery. If anyone could give me any information about the benefits and risks of surgery, I would greatly appreciate it. Just not knowing much now is a little tough. We have 2 children (girl 4, boy 1.5). The doctor also mentioned that we should keep an eye on our girl since Moyamoya might be hereditary. Is it common to have multiple cases of Moyamoya in the same family? Thank you again very much for reading and I wish all patients and their families the best.
Matthew Fairbairn <mg_fair@yahoo.ca>
Osaka, Japan
Tuesday, June 24, 2008 at 03:24:27 (EDT)

Good evening. I was diagnosed with Moya Moya last week. Until last week, I had no idea or heard of the disease. Not until I googled on the web, I did not know there was so much information out there. I am scheduled to see a doctor in a month and I am scared as hell. I feel like I am a walking time bomb until my appointment. Is there any support group in the Seattle area that I can talk to and get more information from?
Thomas <mroum@comcast.net>
Seattle, wa USA
Monday, June 23, 2008 at 23:08:01 (EDT)

Our daughter Kendall is 7 and was diagnosed with MM in November 2007. She had STA-MCA bypass surgery on both sides in December with Dr. Steinburg. As I type this we are at Stanford for a series of tests (6 month follow-up). To all those newly diagnosed or to the parents/family of those diagnosed, keep your chin up and know that surgery can correct this condition. Our daughter is thriving and doing well!
Mike and Karen Keyser <mikeandkarenkeyser@comcast.net>
San Ramon, CA USA
Monday, June 23, 2008 at 22:31:51 (EDT)

my son is 6 and was diagnosed with moyamoya at 14months old.hes had several operations and is doin well.is great 2 hear from some1 who knows about this disease.
kerry hampson <kerrylou26@hotmail.com>
okehampton, devon england
Sunday, June 22, 2008 at 06:55:41 (EDT)

Thanks for adding my story and yes i forgot my email address. Vickieanthony@yahoo.com.6/22 is 1 month post surgery feeling better every day? next testing coming fist week of July to check the left side. just looking for some feed back how you are feeling/felt after your first surgery and whats meds you may be taking if any? Thanks!!
Vickie Anthony>Vickieanthony@yahoo.com <vickieanthony@yahoo.com>
Melbourne, Fl USA
Friday, June 20, 2008 at 15:57:49 (EDT)

Hi! I am the father of a 31 year old daughter who had a baby boy 5 weeks ago and two weeks later had a stroke. When taken to emergency, she was diagnosed with Moyamoya disease. She had an operation on the left side June 6, 2008 and she will have the right side operated on this coming week. We are going through the most difficult part of the process and I hope it will become easier with time. She is at Saint Joseph's Hospital and Medical Center in Phoenix, Arizona. It was all coincidence that my wife took her to the emergency room at this hospital without knowing that they do have a Neurological center that specilizes on medical cases like this one. I would like to ask if there is any one in Phoenix from your support group who went through the same procedure who can talk to my daughter to help her cope with the situation. She is depressed, scared, and confused about all this and more so knowing that she still needs the surgery on the right side. I will certainly appreciate to know and be much thankful for any support and help. Thank you,
Randall Reyes <lawfive01@Yahoo.com>
Santa Clarita, CA USA
Thursday, June 19, 2008 at 21:42:52 (EDT)

44 year old mother of 2 diagnosed May 10th 2008. here is my story follwoing a life time of heachaces and a few white shots on a MRI and a caring doctor. working at home stood up one morning in my office only to see darlniess and loosing control of my left arm for a very short 12 seconds and trip to the hospital and following several test and 4 days later a dr to tell me You have MoyaMoya your right what the hell is that!!!and by the way we cant treat you, no cure, an you will die with out surgery. No one should have to hear those words so thank you DJ and i hope every keeps spreading the word about this web site. New to your sight and thank you to all of you and D.J. My prayers are with you all!!. I have questions my hedaches have increase and still feeling dizzie following standing from a sitting position. I had surgery on June 22 STA and MCA Bypass, not sure how to feel following surgery ??? headaces still coming... Loved the Mayo Clininc Hsp in Jacksonville fla. great staff and DR. Hanel was awesome!! can you please advise on some of your feelings following surgery?? Also what kinds of meds are you taking now? i had a great recovery immedately following surgery.Thanks Vickie
vickie anthony
Melbourne, fl USA
Wednesday, June 18, 2008 at 21:02:50 (EDT)

My 3 yr old son was diagnosed today with moyamoya disease i have never heard of it untill today. we are going to have to go out of state to get surgery for him. i am trying to deal with this. i am 5 months pregnant so this is a hard time for me. i am hoping to find other people with young children who have had similar experiences.
alisha wile <juniorasp_01@yahoo.com>
wichita, ks USA
Saturday, June 14, 2008 at 00:57:03 (EDT)

I'm 33 and wonder how life is after surgery?
nick <nickc952@yahoo.com>
toms, nj USA
Monday, June 09, 2008 at 13:00:55 (EDT)

Our 29 yr old son (Glenn)was just diagnosed as having Moya Moya on Feb 28/08, after completing several required tests, he is now scheduled for surgery on June 13/08 @ Toronto Western Hospital, His Neurosurgeon is Dr. Tiamianski and has performed several surgeries on Moya Moya Patients and has stated that none have had any stroke activity since which is very comforting. Glenn just became engaged on Christmas Eve and has been a commercial Driver since he left school. This has all been an extremely devasting and streesful time for all of us. Thanks go out to Dj & all the others who have posted here and given us Hope & Faith that he may be able to lead a normal life, I think the biggest fear for Glenn is that he may never be able to drive commercialy again and will have to look into some kind of re:training program since that is all he knows. The fear of the unknown is great for all of us as it must be for all to visit this website. You are all in our prayers and may Glenn be in yours. If any one here in Canada has experienced the surgery or will be doing so in the near future, we would really like to hear from you. This awful disease seems to be more rare here in Canad than in the US.
Heather Fagan <hafagan@nextcom.ca>
Innisfil, ON Canada
Wednesday, June 04, 2008 at 13:35:49 (EDT)

Hi.My mother,45yrs,has been diagonised with MM last year.She was normal and healthy .Last year March,she had brain haemorrhage and paralytic attack after which she became paralytic on the right side of the body.Doctors suggested that no surgery be done until the haemorrhaged part heals up.She has been recovering since then. Now we are thinking of surgery for her.Does anyone know a neurosurgeon in India who has performed MM related operations??
Jyothi <samanthapudi_jyo@yahoo.co.in>
Hyderabad, AP India
Tuesday, June 03, 2008 at 04:59:13 (EDT)

Hi, My daughter is having Moyamoya surgery on the beginning of July 2008 in Stanford University. Are there any support groups or any people in the area that have gone through this. We do not know anyone in the area and would like to know what questions to ask before surgery, etc. We are traveling from Florida. Thank You.
Stephanie Meza <ntravelocity@hotmail.com>
Deltona, Fl USA
Tuesday, May 27, 2008 at 13:19:37 (EDT)

Hi my daughter was daigonoised with mm 5/9/2008 she is twelve years old she has always been healthy.She was acting strange for a week I thought it was just puberty.Because she was still doing good at school in fact she brought her math grade up from a c to a.Well she complained of left arm pain so i thought she slept on her arm.Intill one morning she couldn't get up so i called 911. Still you would of thought nothing was wrong besides that all her vitals were normal even the parmedics and doctors in the emergency room thought nothing was wrong with her.But the doctor decided to order a catscan which showed that she had some tias.The next morning i went home to shower i returned and she had a breathing tube and was unconsious when i left her she still could talk to me and was alert.From what they told me she sufferd a major stroke while in the hospital i haven't talked to her since she is still unconsious.So intill she becomes more alert the will not consider the surgery.Please if anyone has experience this situation with mm please contact me at 317-366-5911 or 317-664-8850. I would appreciate it good bless every family that this diaese has affected.My daughter is a patient at Riley Children Hospital in Indianapolis,IN.
Takisha Bryant <ms.kisha26@yahoo.com>
Indianaopis, IN USA
Sunday, May 25, 2008 at 15:24:22 (EDT)

My 26 year old son Michael was diagnosed with Moyamoya during Thanksgiving 2007. He got up on Sunday before Thanksgiving acting confused and his personality was so different. We took him to the doctor on Monday and he said it was Bell's palsy, as he had no weakness at that time in his arms, hands, or legs only a little weakness in his face. We took him to the neurologist the next day, and he did a stat MRI and the doctor saw a large lesion on the right side of his brain and small lesion on the left side of his brain he could not explain what it was . He even told me 26 year olds do not have strokes and referred to me as nervous mother. I took him to the ER at Memorial Hermann in Houston,the Wednesday before Thanksgiving when they saw his MRI, he was admitted. They did an MRI/MRA and it took 2 days of constant testing to come up with the diagnosis. On Friday after Thanksgiving the doctor told me my son had a stroke and could not tell me why. He had an arteriogram which showed the MoyaMoya and he had another stroke after the arteriogram. Dr. Kim said it was too dangerous to do surgery until the brain had time to heal for 4-6 weeks. He had bypass surgery on both sides of his brain at the same time on January 3, 2008. We were lucky in that Dr. Wong Kim had just returned to Memorial Hermann Hospital in Houston, Texas as the Chairman of Neurosurgery. Dr. Kim came from Harvard where he has done over 50 cases of MoyaMoya surgery. His entire team had just transferred with him from Boston to Houston, when Michael was diagnosed. Dr. Kim is a wonderful surgeon and person. I understand from his assistant surgeon that Harvard recommends doing both sides at the same time. Michael's lesion on the right side was much worse than the left side. This has been devasting as we will never have the same son we had prior to his strokes. He has made remarkable progress after the surgery, but we have a long way to go regarding his cognitive issues as the strokes were in the frontal lobes. Dr. Kim explained prior to surgery that he should have an excellent chance of recovery and living a quality life inclusive of getting married, working, and the like. He looks great physically and can walk, talk, and use both of his hands, his left hand was effected by the strokes. He is in rehab to learn independence and then a cognitive program to help him go back to work. Dr. Kim told us that when he was learning to do the bypass procedure in 1998, he continues to follow his first patient who has not had any subsequent strokes. This is a wonderful website, does anyone have a loved one who had frontal lobe stokes with Moyamoya and what the outcome has been?? This disease is indeed a nightmare. Dr. Kim will see him again in July which will be six months post op and he said we would be amazed at how many branches of arteries will have taken root since the surgery. I would highly recommend Dr. Wond Kim for this surgery, he is practicing at Memorial Hermann in Houston, Texas. My prayers are with all of you as well, because I know what you are going through. Thanks for the chance to vent.
Rebecca lehmann <rlehmann@mdanderson.org>
Houston, Tx USA
Tuesday, May 20, 2008 at 17:51:03 (EDT)

Hi Everyone, We are back from Boston and so far, William is doing great. He had surgery on both sides of his brain on May 5th and after a couple of very rough days(severe nausea and headaches)he has made an amazing recovery. Dr. Scott and the team at Boston Children's are wonderful. Dr. Scott has called everything that has happened, right down the line, from the nausea and headaches to when it would end. He told us William would feel like eating on Wednesday night, and he did, and that on Thursday, he would be a different child, and he was! He was discharged from the hospital on Friday, we went sightseeing in Boston on Saturday and William walked everywhere we went! No wheelchair needed! We are starting with his tutor tomorrow to get him caught up at school. We are so thankful for everyone at Children's. They are amazing people and care givers. William has to have an MRI/MRA here in Greenville in 6 months and an arteriogram in Boston in a year. He has had no more episodes of chorea or any other symptoms of moyamoya. We hope this will take care of his problems. Dr. Scott is wonderful!
Marie <dochenry@charter.net>
Greer, SC USA
Tuesday, May 20, 2008 at 15:46:48 (EDT)

I am 42 and was diagnosed in November 2004. I had my first two surgeries one week apart and my third surgery 6 months later. The doctors at Barrow's Neurological (St. Joseph's Hospital) in Phoenix, AZ are the BEST. They have more experience and knowledge of MM than anyone, anywhere. I was very lucky to be so close and to be diagnosed so quickly. After having several TIA's, I got the right help. Dr. Robert Spetzler (head of neurosurgery and Dr. Peter Nakaji were wonderful and answered all my questions. I have some permanent damage (from not getting help sooner), but nothing that anyone can tell. If you have questions, please ask. This does not mean a death sentence. There is help. I am on meds to suppress headaches still, but I live a normal life and enjoy everyday I have with my beautiful family. I thank God every day for working thru these surgeons to give me back my life.
Joyce <skeemama@yahoo.com>
Surprise, AZ USA
Saturday, May 17, 2008 at 03:05:29 (EDT)

I am 42 and was diagnosed in November 2004. I had my first two surgeries one week apart and my third surgery 6 months later. The doctors at Barrow's Neurological (St. Joseph's Hospital) in Phoenix, AZ are the BEST. They have more experience and knowledge of MM than anyone, anywhere. I was very lucky to be so close and to be diagnosed so quickly. After having several TIA's, I got the right help. Dr. Robert Spetzler (head of neurosurgery and Dr. Peter Nakaji were wonderful and answered all my questions. I have some permanent damage (from not getting help sooner), but nothing that anyone can tell. If you have questions, please ask. This does not mean a death sentence. There is help. I am on meds to suppress headaches still, but I live a normal life and enjoy everyday I have with my beautiful family. I thank God every day for working thru these surgeons to give me back my life.
Joyce <skeemama@yahoo.com>
Surprise, AZ USA
Saturday, May 17, 2008 at 02:12:14 (EDT)

I just received a text message from my best friend today. She is at Stanford going thru the tests and has surgeries scheduled. Thank you for the wonderful website to help me understand what my friend is going thru.
Kelli Graham <kellijo63@gmail.com>
Omaha, NE USA
Friday, May 16, 2008 at 15:01:19 (EDT)

Hello again everyone. I am writing once again to update on my surgery. I was due to have the STA-MCA in December of '07 but it did not actually happen until the first of January. I was told that I would have the surgery on Friday and be out on Monday as long as everything went well. Unfortunately Monday came and went as well as Tuesday and so on and so on. I ended up being as Southwest Medical Center for two weeks all together. So much for an in and out procedure! Anyway, what occurred were small seizures due to who knows what while I was there. I ended up being hooked up to an EEG for 48 hours. I couldn't leave the room at all which was hard for me. They hoped to find some sort of activity while I was hooked up to the machine. But of course nothing happens when you need it to. After days of trying to figure out what was going on, my surgeon decided to do another angiogram. Those things are so painful and I cried for hours because I didn't want to do it. But thankfully I did and found out that the surgery DID NOT work! I was devestated! I had been in the hospital for two weeks away, from my children (we live in Fort Worth and I was in Dallas) and my husband. Apparantly when my surgeon performed the surgery it was successful, but after a few days the artery had already closed up. I knew it was a 50/50 shot before having the surgery, but I had hoped for the good 50! Anyway I don't want this posting to deter anyone from having the surgery!! I am completely happy I did it. I figure God closed one door but opened a different one for me! I am really happy with the hospital and doctors who helped me. They were GREAT!! In fact on June 27, I am scheduled for my second surgery. This time they will take part of the radial artery from my wrist and fuse it inside of my head. And they're going in on the same side, so they don't have to keep opening me up. Bless my surgeon. He's so great. Anyway, I would love to hear from anyone who may have had the same problem or anyone else who just wants to ask questions. May God bless you all and your families!
Janette Sanchez <jsanchez74@charter.net>
Fort Worth, TX USA
Thursday, May 15, 2008 at 11:44:47 (EDT)

I want to be part of the moya moya family
ISAGANI L. CLAVEL <i_clavel@yahoo.com>
taguig, Philippines
Thursday, May 15, 2008 at 08:46:05 (EDT)

I don't know if I have to check in each time but did.Jennifer knows everyone and everything but does odd things she would never do.She won't keep her clothes on I can't even think of the other thinks she does.I was wondering if it could be from the seizure and it will take a while to get back to normal.The doctors checked everything and everything looked good.
Carol Santellana <carols3471@sbcglobal.net>
Houston, Tx USA
Wednesday, May 14, 2008 at 18:51:18 (EDT)

I am so glad a site like this exists. Recently my oldest brother was diagnosed with MM after my other older brother was diagnosed a few years back. I am now concerned for myself. (My mother had a major stroke at my age. I'm 52 years old.) I have some questions as to what I should be doing now. Do I need to see a specialist or get MRI? Should I obtain more life/long term care insurance? I don't want to over-react, but, I want to be proactive.
Jennifer <Azanon100@yahoo.com>
Hacienda Heights, CA USA
Monday, May 12, 2008 at 12:44:20 (EDT)

My daughter (Jennifer had her surgery in 2000 and has really done well.She has 2 children & never had any problems but last week she has a serzure which the doctors think was from a bladder infection. I don't know if I believe that.She had to be straped to the bed and now she is home but very confused.Have any of you all had this.All her test were perfect.I really don't know how to send messages on here to well so if I don't answer my e-mail is carols3471@sbcglobal.net.I already know Elaine and a few more but it has been years.I thought we were over this nightmare. Thanks,Carol
Carol Santellana <carols3471@sbcglobal.net>
Houston, tx. USA
Monday, May 12, 2008 at 10:55:40 (EDT)

Hello everyone. my 8 year old cousin was just diagnosed with moya moya last month. symptoms started more than a year ago,but doctors failed to diagnose it because its a very rare.last march he had left sided body weakness and couldn't walk without assistance.his blood pressure shot up to 200/110 and was admitted to the ICU.after the attack he was unable to eat, speak or move.he's always sleeping and when he wakes up he's always crying as if something hurts and he couldn't tell us.he had a burr hole surgery.seeing him like this breaks my heart.i would always pray he'll get better.he is a very good boy,always happy, smiling all the time.i miss his laughter,i miss him playing with us just like before.i really wish he'd get better so he could do what healthy kids do.he loves going to school, eating out,playing basketball.i know someday he'll come back to us. knowing that you guys are there gives me so much hope.
lynne <lynneclavel@yahoo.com.ph>
Taguig City, Philippines
Monday, May 12, 2008 at 01:37:43 (EDT)

hello DJ and everyone else. I am writing to let you know that i have had surgery done to correct the narrowness of the veins running up to my brain. I suffered a mild stroke again and had to put up with another three months of therapy and to learn how to eat all over again. My family has been wonderful through all of this. Eventually, Dr. Woo says that it will be a stroke that kills me. I used to be so afraid of it happening to me, but now I thank God for every day I wake up. Kiss your children every day. I must say that I feel really good and that's all that counts. keep on trucking. Sue.
Susanna C. Quintana
Lakewood, OH USA
Monday, May 05, 2008 at 12:51:49 (EDT)

hi everyone and DJ,I have been doing real good since the last time I wrote you. I am 47 years old and had two strokes in the year of 2001. I had further surgery to correct the smallness of my veins going to my brain. It went better than my doctor expected and I went back to work after three months. He said that I may feel really good, but eventually it will be a stroke that kills me. I thank god that I am alive every day. My children and my familiy have stuck by me thru all of this and no one knows just how special they are to me. Thank God for my faith in Him, because I couldn't have done it without Him. My faith has increased in many ways and there is no doubt that the is a God in my book. some days, I feel to tired to get up, then I feel this wonderful feeling of being lifted up and I can find the strength to go on and do the things i have to. I work full time and I love what I do. I have been divorced since before my strokes and I am not sorry. My children, Anthony and Carmen are wonderful people and I am so proud of them. They fight alot, but this two shall pass. My sisters and brothers get along with each other, better than we used to.Have a beautiful day and keep on trucking. Sue
Sue Quintana <QUINTS@odjfs.STATE.OH.US>
Lakewood, OH USA
Monday, May 05, 2008 at 12:34:49 (EDT)

Hi it's 12 year old briana and things are stable but not going so well. Me and my mom is getting the run around with childrens hospital in milwaukee when it comes to getting medical records and second opinions. Now they want to perform a diamox brain stect study test on me and they say it's dangous but they are doing to see if I'm a canadiate for surgery. They told me with out surgery I would to survive two years. Help I'm up for advise for me and my mom? Ms. Briana
braina fuller carter <poopookittyhoney@yahoo.com>
milwaukee, wi USA
Sunday, May 04, 2008 at 09:45:02 (EDT)

I had a TIA March 15 2008 where my husband and I thought it was just a food allergy. 3 days later I finally stumbled into the doctor office to see what it was. There she said it wasnt a food allergy, I didnt have blood sugar problems and at 22 years old she is 99.9 percent sure it cant be a stroke but calls for an MRI just "to be safe", a week later I have my MRI, 2 hours later I am already hooked up and in the hospital for what looks like a blood clot in my brain. 4 days later and after several "your case is so different and unique, your too challenging, no one has a clue what is wrong with you!", they come in with MoyaMoya. I am actually still in Pheonix on Post Op from my MCA STA Bypass on April 25 2008. Doctor Speltzer in Pheonix is AMAZING and I will answer any questions, concerns or anything about him - I would recommend him out of anyone! He has had more MoyaMoya cases then anyone else in the world and is just remarkable and wise. At this point, we arent sure I will ever need a second one but the only way to find out is wait and see. Ill keep everyone posted. Please, anyone with questions about Doctor Spetlzer, being young, the surgery, post-op - let me know!
Lauren Crawford <crawford.lauren@comcast.net>
Aurora, CO USA
Thursday, May 01, 2008 at 00:18:21 (EDT)

I am one of the Lucky ones, both of my parent's are RN's so I had access to some of the best Dr.'s in the San Fernando Valley, and UCLA back in the 80's. At that time I was told that only young Japanese women got this disease, my great-great grandfather was Japanese. I was diagnosed with Moya Moya in September of 1984. I had my first TIA in February 1984, at work, I was 19 years old at the time. Between February and July I had 3 small strokes and numerous TIA's. I had all the tests the Dr.'s could throw at me and some tests 2 or 3 times. I even had a brain biopsy looking for Moya Moya that was inconclusive. Finally, on July 3, 1984 I had a major stroke. I was already in the hospital because I couldn't speak the morning of July 2 over night I had my stroke. This stroke caused paralysis of my right side, I was unable to dial the phone, unable to read, unable to do simple math, and I spoke Spanish (I am not Latin), I had taken 2 years of high school Spanish. It wasn't until a month after I was released from the hospital when I had this strange bruising sensation on the top of my right and saw a new Neurologist (my mother had fired my other one because he told my mom and Dr. that I was just hysterical and that it was all in my mind)she told me that the sensation that I was having was a stroke and she changed my medication to coumadin and I have been symptom free ever since 1984. I was even able to become pregnant. My pregnancy was high risk but I would have done anything for my son, who is healthy and will be 19 years old on April 29, 2008. I don't think of myself as a survivor of Moya Moya it is a part of me and as long as I take my meds I am in control of it. I am going to celebrate my 24th anniversary in July.
Kristine Poe <kmlebrane@yahoo.com>
Agua Dulce, CA USA
Monday, April 28, 2008 at 16:47:29 (EDT)

It has been a while since we have updated on our son, Cash. We owe our lives to Dr. David Frim from Chicago for the quick diagnosis, and care he provided for us. There is more than the two doctors that I have read so much about on this web site. There might be a successful, caring surgeon closer than you think. Dr. Frim is amazing and we thank him from the bottom of our hearts. Cash is doing great and we just recently received the great news that his surgery is doing its job and we are now to repeat MRI's every year instead of six months. He is very confident that he won't suffer another stroke. None of his MM patients have suffered a stroke after the surgery. We are very blessed to have met this wonderful surgeon.
Abbe Harpp <abbelynne@sbcglobal.net>
Merrillville, IN USA
Sunday, April 27, 2008 at 22:10:21 (EDT)

I have posted comments in this room a couple of times before but it's been a while and I think it was when I had my first surgery back in Oct 2006. So it's time now for me to do the 2nd ECIC bypass on the right side. And I am terrified. I wanted to mention my wonderful Dr. here in Nashville though. I didn't know if any of you knew of him. his name is Dr. Robert Mericle at Vanderbilt University. His name truly says it all. He really is a miracle. My first surgery was 15 1/2 hours long and I came out of intensive care to go home 2 days later due to this wonderful surgeon. If any of you are looking for a great Dr. and are in this area, he is truly a great one. I had a lady who saw my comment posted in this room one day and called me out of the blue and told me about him and to that I will ever be so greatful. She and Dr. Mericle both I believe saved my life. Just wanted to pass on this information to you all..God Bless.
Tresa Overstreet <tj98809@bellsouth.net>
Nashville, Tn USA
Saturday, April 26, 2008 at 00:14:18 (EDT)

I also had moya-moya disease and hadSurgery on one side of my brain. It worked out great. I wish there was a group that would meet in RI/Ma/Conn on this subject. But I know it is a small group so it doesn't get the attention.
Rick Kelly <rk2425@msn.com>
Barrington, RI USA
Friday, April 25, 2008 at 10:58:07 (EDT)

Thanks for the site. My five year old adopted son was just diagnosed with Moyamoya today. My wife and I will be on this site learning as much as we can in the next few days and weeks.
Scott Diaz <scott_diaz@yahoo.com>
Seoul, Korea
Thursday, April 24, 2008 at 01:43:19 (EDT)

We all know that moyamoya disease is an extremely rare disorder in most part of the world.Most of the victims are the young ones.The only cure of this as far as I know is to undergo into what we call a surgery. Why I know all this stuffs? Because my cousin recently went through this. Thanks for this site. It helps a lot especially in giving the family of the victims a support group. criean Put The Message Where It Matters! WideCircles aka Wide Circles represents relevant, distributed, highly targeted and efficient internet word of mouth marketing using entertaining or informative messages that are designed to be passed along in an exponential fashion using social network mediums such as blogs, forums, wikis and so on. http://widecircles.com
criean <glenn@1explore.com>
california, NY USA
Wednesday, April 23, 2008 at 13:39:29 (EDT)

Dr. Scott performed surgery on my two year old son last month. He and the team at Children's Hospital Boston are confidence inspiring. It was the right decision to go to them. Our son suffered a stroke prior to the surgery, which he continues to recover from. Wishing your family a safe trip and your son a speedy recovery.
Angela Todd <angela.todd@alltel.com>
Little Rock, AR USA
Wednesday, April 16, 2008 at 15:33:54 (EDT)

Thank you for this information.I knew nothing about moyamoya and have had the opportunity to learn.
Sandra Freeman RN
USA
Tuesday, April 15, 2008 at 15:02:52 (EDT)

Hi everyone. My 16 year old son was diagnosed with MoyaMoya about 6 weeks ago after an episode of Chorea. We are heading to Boston Children's at the end of April for surgery. Needless to say, we are all pretty shaken by this. Has anyone had experience at Boston children's Hospital with Dr. Michael Scott. Everything I am seeing says he is the one to see if it's a child with this. WE are hopeful that the surgery will be successful and this is the best option for our son.
Marie <dochenry@charter.net>
Greer, SC USA
Saturday, April 12, 2008 at 22:11:08 (EDT)

I'm 12 years old and I just had my first stroke. I need a doctor that can help me try and live a normal life. I'm in pain and me and my mom has been living at the hospital. If there are other people like me keep in touch.
briana fullercarter <poopookittyhoney@yahoo.com>
milwaukee, WI USA
Saturday, April 12, 2008 at 14:43:53 (EDT)

Hi my name is Vicki and I would like to let you know about my nephew Nicholas Flores who has Moya Moya. Nicholas is 8 Yrs old and he has great parents Mary Jo and Jerry Flores. I would really appreicate it if you would take time to contact my sister and become a support partner with her and give her some insight to where she can get help for Nicholas. Her telephone number is 806-741-0972 and my number is 806-441-4401. I thank you for taking the time to share your time and story with my sister. I only wnat her to know that she is not alone. Thanks, Vicki Herrera Indio Ca
Vicki Herrera <herreravicki@yahoo.com>
Indio, Ca 92202
Thursday, April 10, 2008 at 00:39:01 (EDT)

My sister was diagnosed with MM a month ago. I am currently deployed to Iraq and she just had a bad stroke. She won t talk and is having Kidney problems. As of right now she is to unstable to move to Houston where she was to have surgery on the 20th of April. I am just wondering the severity of the problem. Do get the Red Cross to get me home will she still be there when I do get home from the deployment I am at a loss. I do know the damage from the last stroke is pretty severe. How life threatening is the surgery after a stroke like this?
Ray <doyle.underwood@us.army.mil>
Texarkana, Tx USA
Tuesday, April 08, 2008 at 01:38:17 (EDT)

My mother just had a stoke and when she was under going test they found that my she has moyamoya.
Amber <sweetmyst16@yahoo.com>
mi USA
Friday, April 04, 2008 at 00:59:43 (EDT)

Hi, my name is Edith and my mother was recently diagnosed with moyamoya. She is only 40 years old and truthfully I'm scared.Can anyone give me advise or tell us what to expect? Thank You very much for taking out time to answer me.
Edith Canales <nicalove85@yahoo.com>
Medford, NY USA
Wednesday, April 02, 2008 at 20:21:16 (EDT)

My name is Karen Pelletier. I found this site last year and I am now ready to tell our story about this horrible disease. If there is anyone out there that has lost a family member from this terrible disease. Please email us and let us know how you cope with such a terrible devastating loss. Our Daughter Kristy Pelletier was diagnosed with this terrible disease called Moyamoya in May of 2007. She was having mini stokes. She was scheduled for surgery on the right side of her head on June 18, 2007. She made it through the 5 1/2 surgery with no complications and in the recovery room, she talked to us a little. A couple of hours later, we were told that she had a major stroke on the left side of her brain. We were so devastated. A couple of days later she had a seizure and was rushed into surgery again to release the pressure on her brain. She was very sick and in critical condition. Another couple of days later, she had another major stroke and was rushed into surgery again. This was all to much for our beautiful daughter Kristy. She died on June 25, 2007. One week after her first scheduled surgery. We were so devastated from the loss of our precious daughter. She was only 21 years old. Please, if there is someone out there who has lost a precious family member from this awful disease, please email us. We need someone to talk to. We have made an on line memorial of our daughter Kristy. Please feel free to visit her site and light a candle for her. Type in remembered-forever.org and on the left side, when you come to the site, where it says find a site, type in her first and last name. It will bring you to her site. Please light a candle for our daughter. I ask that God will take care of all those who have been diagnosed with this disease and to keep you safe. I pray that God will give you strength to face your upcoming surgery. Kristy's mom, Karen
Karen Pelletier <karen.pelletier@comcast.net>
Bristol, CT USA
Monday, March 31, 2008 at 23:15:37 (EDT)

The info on this web page is very helpful I will be having By Pass Surgery April !),2008 at UW Madison Hospital Thank you Alicia
Alicia White Eagle <helasha1@yayoo.com>
USA
Saturday, March 22, 2008 at 11:28:55 (EDT)

hello my name is thomas roollins i have been diagnosed with moyamoya disease. the doctors discovered the disease after i had a stroke unexplained. that happened in april of 2007 i stayed in the hospital for about 1-2 weeks the doctors didnt know what to do with me. the disease was unknown to the doctors. little was known about the diesase, doctors would come in and say that they just wanted to see someone with the diesease. i have always had bad headaches all my life. in june of 2007 i under went suregy to repair my blood vessels or to restore blood flow to my brain. the doctors gave me no choice with the suregy i was to have it or die. the doctor told me that i would eventually have to have the other side done. that day is coming sooner than i think. my headaches are worser,now than they have been.
thomas rollins <selinarollins402@yahoo.com>
mcminnville, tn USA
Wednesday, March 19, 2008 at 17:36:26 (EDT)

I am so grateful that I found this web site.November 2006 my husband had a car accident, he suffered a concussion and has had headaches for over a year now.January 2007 he had an MRI/MRA of the brain because of this accident the Neuro Dr we were seeing looked at his MRI and said to us that he thinks he sees something that wouldn't be a result of his accident.Long story short we lost our insurance before this Dr could tell us what he thought he saw on this MRI, 11 months after losing the insurance and getting it back,my husband and I are hit with this brain disease Moya Moya. We are off to see Dr's at Jefferson hospital here in Phila, Pa.on April 3rd 2008.These past 3 weeks have been hell, for the first time since being hit with this news my husband has finally looked at this web site and just sat and cried. he is 39yrs old and otherwise heathly.His MRI from 1/2007 showed an occlusion to the right middle cerebral artery and he has been walking around for the last year not knowing this because we lost our medical coverage.We are lucky enough to have a sister that is a E.R Nurse in New Jersey and a Dr she works with is buddies with a specialist at Jefferson hospital, we took my husband to her ER and as a favor they did all kinds of blood work,a CT Scan after hearing what we were faced with.The CT Scan did show the occlusion of the middle cerebral artery but also showed vessels branching off from the Artery with some blood flow, just how much we don't know, I guess this is what they will find out at Jefferson,I do know his Cartiod arteries are find as is his left side of the brain.Only 1 blood test came back elevated and that was an S protein????I have been on this web site daily as a form of comfort and my prayers are with everyone on here.I am hoping in time my husband will also be on this site as much as I have been so he too can see he is not alone. Thanks to everyone for there stories, I hope to hear back from some of you. Wendy O'Donnell
Wendy ODonnell <wendyodonnell07@comcast.net>
philadelphia, pa USA
Tuesday, March 18, 2008 at 14:13:09 (EDT)

I have just found out tonight that my sister who is in her thirties has moya moya and was wondering what next? Catherine had brain surgery when she was 13 and has been on several drugs since then , she had surgery in South Africa and came out very well (we grew up in SA) . Now in her late thirties last month she was told she had moya moya , any advise would be helpfull thank you . We lost our mother 3 years ago and my dad had a stroke 4years ago , I love my sister and dont want to loose her.
Stuart Diston <sdiston07@aol.com>
UK
Friday, March 14, 2008 at 16:05:59 (EDT)

My brother in law was diagnosed with Moya Moya around the age of 8 when he had his first stroke. He is now 26 and has never treated his MM and hasn't had an MRI in 4 years. That MRI showed a major part of his left side of his brain gone! Recently he has become a different person. Violent outrages, unrealistic thinking, slurred speach and admits to horrible headaches. We don't know what to do, he will not see a doctor and the family is getting scared. Anyone have suggestions or know anyone that has had these symptoms?
Jaime
WA USA
Wednesday, March 12, 2008 at 12:44:04 (EDT)

my daughtewr has moyamoya, 1st surgery in sep 2006,2nd in jan 2007, all seems to be going well, needs extra help in school, not sure what help will be needed in future would like to her from anyone 1 in uk with this medical condition.
karen <karen1774@hotmail.co.uk>
england
Tuesday, March 11, 2008 at 17:15:37 (EDT)

just found out 2 wks ago i had MM.im married with a family of 8 live in ireland.we dont no much bout it here in ireland. so please sum1 help
bridget reilly <biddyreill@hotmail.com>
newbridge, kildare ireland
Monday, March 10, 2008 at 21:09:29 (EDT)

hello from ireland.i am an MM sufferer.dont no alot bout it. wul like to here more
bridget reilly <biddyreill@hotmail.com>
newbridge, kildare ireland
Monday, March 10, 2008 at 20:53:38 (EDT)

My 8 year old daughter had her surgery 6/07. She had high blood pressure since age 4. The first 3 months post surgery she needed no BP meds. Now her BP keeps going up and up. Has anyone else had this problem w/their moyamoya?
Lori Reid <lreid7@cox.net>
Virginia Beach, VA USA
Sunday, March 09, 2008 at 16:35:50 (EDT)

Hi i was diagnosed with moya moya at the age of 18 when i had a stroke, this affected my whole right side,leg and arm,can not control my hand, speach goes funny, vision plays up as well. The area of my brain that is affected is the centre cortex which is why i have not had the opporation because i was told the risks were too high. I am now getting scared as i am startng to get miagrains and strong headachs for the pass six weeks non stop. I am on the strongest medication there is and don't know what to do, can you help me please
Rebecca Matthews <shineybox@yahoo.co.uk>
isle of wight, ryde uk
Saturday, March 08, 2008 at 15:43:07 (EST)

Hi i was diagnosed with moyamoya at the age of 18 yrs old am now 20, i have not had the operation down to the fact it has affected the centre cortex of my brain and my consultants said it was far too dangerouse. Now i am starting to get scared as i think the tablets are not working as well as they were when i first started taking them on highest dosage and for the last six weeks I have been suffuring from migraines and headaches, if any one could help me with this dilema please contact me
Rebecca Matthews <shineybox@yahoo.co.uk>
isle of wight, ryde uk
Saturday, March 08, 2008 at 15:20:07 (EST)

Hi to All- I am new to this site because I never knew it existed and I didn't know there were more of you out there. I am 22 years old and I was diagnosted at a young age. I had seizures and strokes until I had the surgery. I was 4 or so wen I had surgery. I was also given a death sentence. I wasn't supposted to live past the age of 7. So to be here and still doing well was amazing to me and my mom. So it's good to know more about moyamoya since I still don't totally understand it.
Jenni Maher <jennim211@hotmail.com>
Shoreview, MN USA
Friday, March 07, 2008 at 14:52:43 (EST)

I was diagnosed with moya moya 9yrs ago.I had the surgery and have been(so far) symptom free.Every time I have any problem at all,my wonderful primary physician(who of course has no other moya moya pts)thinks that this may be the cause.So now I'm dizzy,and I'm having an MRI this friday.The poor baby thinks that this will show'something'.The only test I've had to show the progression is an angiogram.I feel like I'm jumping through hoops.It's okay.I'm a nurse and work at one of the top 10 teaching hospitals in the U.S.Knowledge sucks sometimes.Take care
mary kertz
USA
Wednesday, March 05, 2008 at 21:34:11 (EST)

Hello Everyone, We came back from Stanford, California 3 weeks ago. Our 14yr old daughter had 2 bypass surgeries a week apart. Dr. Steinberg and the entire staff were awesome. Our daughter received top notch care. She went back to school 12 days after the second surgery. She is doing great! Thanks again for making our research easy. We won't be able to make the reunion this year since we have to go back out there for the followup tests at the end of the summer. Hopefully we can meet all of you next year!
Chris Slowey <byoung10@tampabay.rr.com>
Tampa, FL USA
Monday, March 03, 2008 at 11:44:57 (EST)

my sister passed away 7 years ago from moya moya disease and i have to say that it is awesome for to have found others she was 1 in 150 at the time!
lisa gozdowski <lgozdowski@buckeyeexpress.com>
perrysburg , ohio USA
Monday, February 25, 2008 at 15:40:36 (EST)

Hi All, My sister Blonnie who is 40 received a left side bypass at Stanford by Dr. Gary Steinberg on Feb. 12. She is back home in Alexandria doing great. The whole Stanford Team was GREAT!!! Jill in Dr. Steiberg's office is an angel. She talks to you and answers questions and clearly cares so much. My sister Blonnie is doing well. Dr. Steinberg said there was only 0.4 blood flow to the left side of the brain and now after surgery there is 16. Normal is 20. He seemed very pleased with the result. Also, her tests showed only left side Moyamoya. So far. Fingers crossed. She had been having undiagnosed headaches and seizures and possible TIA's for about 10 years with no diagnoses and was also suffering some speech problems and had a horrible 2 week episode of Aphasia in August. Her speech improved but remained slightly halting. After surgery, she is tired and a little frustrated by speech trouble which we were warned about as operation was to left side. Also she discovered she can't really write, as her motor skills are a little off. Walks very slowly and is tired. However it has not even been 2 weeks since surgery. We are hoping all these symptoms will improve and have been told once the swelling goes down they should. Any info about how long it takes and what exactly to expect in recovery. This has been an amazing experience to witness, and I am so thankful for this site and for the fact it all went so smoothly. Thanks for all your postings and good luck to all those about to have and recovering from this surgery. Any specific info about left side bypass surgery recovery would be appreciated. Thanks and blessings!
Cori Thomas <Corithyme@aol.com>
New York, NY USA
Sunday, February 24, 2008 at 01:06:14 (EST)

Hello everyone!!! My five yr old neice was diagnosed with MM in March 07. She had her first surgery in Sept. 07 and she had her second surgery in Jan. 08. The first surgery went very smooth. The second sugery was a little different. She has suffered 3 ministrokes about a week after her 2nd sugery. The doctors said there isn't much to be done, but wait for the new arteries to grow. The doctors told my sister there is a race against time for these arteries to grow. We pray daily that she doesn't have anymore strokes. Whenever she has the ministrokes, she seems to recover quickly. She is so vibrant and she hardly ever complains except when she has to go to the doctor. I am praying for all mm patients that God will heal and restore every inch of your bodies. Remember my neice in your prayers. Please feel free to email me.
Angel <afcorp2003@yahoo.com>
USA
Tuesday, February 19, 2008 at 11:22:42 (EST)

Hi, My 8 year old daughter, Jillian was diagnosed a week ago with MM after having a scan because of migraines. we have met with a surgeon at children's hospital in London and they want to do surgery in March if she can get all her tests done. The only symptoms she has is the head aches. The right carotid artery is closed and the left shows signs of closing. She is a very active hockey player and I am terrified that if we don't act soon, she will have a stroke, but if we do she may also have one. The surgeon just did the same surgery on a 15 yr old, which went smooth, but 2 days later he had a major stroke. I don't know which way to go, wait or surgery. Any Help??
Kathy <kthybrklmns@hotmail.com>
Thamesford, ON CAN
Sunday, February 17, 2008 at 22:27:46 (EST)

if anyone has any questions about mm you can write to me i had surgery 10 years ago and now i am 38 years old. i would be happy to share my story to help someone else understand.
SUZETTE <TWEET814@AOL.COM>
STATEN ISLAND, NY USA
Friday, February 15, 2008 at 23:59:58 (EST)

Aloha Everyone, My name is Cain Kamano and my wife, Elizabeth (LIZ; aka Honey) was just diagnosed with Moyamoya today. What a turn of events, though we are saddened by the news... I know we are blessed to have a knowledge that everything that happens to us... is for our good! Though it may be hard to try and picture exactly what that is for us right now... Ultimately we know that we Love and Trust in the Lord... and that in his timing, he will reveal all that we need to know. And in return reminds us of how much He cares for and Loves Us! I have been blessed by the outpouring of hope, love, relief, and yes pain by this page and guestbook, that I just want you all to know that I LOVE YOU ALL. And though we may have never met... yet, I feel encouraged to say that your experiences has brought peace and a clearer understanding to me that we are more connected to each other in this life than we may realize. And though they say that Moyamoya may be a rare disease, I am confident to read that there are men and women in the world (and as I have read, right here in Hawaii) that God has blessed to perform such an intricate procedure. And so while we wait for the next step(s), consults, and treatment / surgical recommendations, my wife and I would be honored if you would 1) keep us in prayer and 2) please write us with any and all your suggestions, comments, thoughts and feelings, and we ll be sure to respond as quickly as we can. Thank you all for taking the time to read this and it is my sincere prayer that this message may have been just as meaningful to you as it has been for me. Until next time Aloha, Cain K.A. Kamano Asset Management 101 Owner P.O. Box 1509 Kaneohe, HI 96744 Phone: (808) 699-8588 Email: assetmanagement101@hotmail.com
Cain Kamano <cain_kamano@hotmail.com>
Honolulu, HI USA
Wednesday, February 13, 2008 at 17:03:04 (EST)

lots of support here it helped me through both my surgeries
jennifer albiar <jennlbrz@aol.com>
bakersfield, ca USA
Wednesday, February 13, 2008 at 00:18:03 (EST)

I have been wondering about something that Rebecca Richmond, TX posted on Jan. 16th, also. Is there a link to medicines a mother had to take during pregnancy and MoyaMoya? My 11yr old daughter, Shelbi has it and when my mom was pregnant with me she had shots of DES??, something experimental back in the late 60s early 70s, to keep her from losing me. This caused me to have high risk pregnancies so I had to take either Brethene?? or Magnesium Sulfate when I was Pregnant with each of my children. I mentioned this to her NS and he doesn't seem to think that there is a connection, but this might just not be something anybody has ever done a study on. Shelbi also has a Chiari Malformation, Syrinx and Basilar Invagination. She is the only patient with MM and a Chiari at Children's Hosp. in B'Ham, so if there is anyone else out there with this combo please let me know. Thanks.
Tina <kdap97@aol.com>
Trinity, AL USA
Saturday, February 09, 2008 at 20:12:31 (EST)

Hello everyone My husband was diagnosed with MoyaMoya in 2000 he was 47 yrs at the time. We opted to have surgery in May of 2000 something happened and he suffered a mild stroke with some dehibilitating conditions. Conditons are minor enough that he is able to take care of himself, but unfortunaley he is not able to work anymore. Because of this mild stroke, his surgeon postponed the second half of the bypass. he now is showing some new systems. What I want to share with you all is that during and after the surgery I was not afraid. I clearly remember praying the Rosary in the hospital room about 2 days later. As I went thru the mysteries. I found myself focusing on my accepting God's will. As I realiazed this the most seren,comforting feeling came over me. and somehow I knew that for about 8 or 10 years we would be ok. It's now 2008...8 years after and he is beginning to have new symptoms....Prayer is the best and strongest medicine God Bless Irene
Irene
Santa Ana, ca USA
Friday, February 08, 2008 at 20:13:14 (EST)

Hi, I do not have Moyamoya but my mother does. She was diagnosed back in the 1980's. I wish more info was out back then. She now is unable to take care of herself. She has had many strokes and unable to even dress or bath herself. Back then doctors were not very familiar with this disease. I am happy to hear that their are people out there now able to get treatment. I wish all of you luck. I am curious of one thing, can I get it? If so, what are the chances? I am not getting a straight answer anywhere.
Cynthia Decker <beartroop4@cinci.rr.com>
USA
Friday, February 08, 2008 at 10:48:08 (EST)

Hi, My son just got operated at his right brain by end Jan/2008. The operation totally lasted for 6.5 hours and it was a successful one. He will get the second operation at his left brain in mid Feb/2008. His progress is in satisfactory, thanks to every doctors and nurses of his hospital.
Tina Wong <tinapy@hotpop.com>
Macau, Macau
Friday, February 01, 2008 at 11:47:15 (EST)

i found out that i had mm november, last year. not really sure what the sympthoms are, all my life headaches were coming, and going. sometimes really bad, sometimes mildly.and at the moment yust bad, but not all days. i also have a background with a bad trauma-expiriense that started when i was 6 years old, till last year, when my mother died. the doctors that i have seen say that, with my history (no fall out symthoms) it is more likely that the trauma is the factor that i have headaches, an dizzyness. don't know were i stand now...
francis <francisschokker@hotmail.com>
den haag, netherlands
Friday, February 01, 2008 at 09:06:20 (EST)

It was first suggested on Nov.30th, 2007 that I had MoyaMoya but my Doctor wasn't sure as I had other problems. But I was referred to Harborview Hospital in Seattle where i was confirmed that I do indeed have it. I was assigned a specialist that is known all over the world and has published several books on this type of disease. My first surgery is schduled for Feb. 8th which is the day before my 57th birthday. I go in next week to start the preop tests. I am getting quite nevous about it all. If anyone would like to email me, I would appreciate it. I do have a lot of questions.thanks and God Bless everyone.
eletha mcclinn <ellathu@hotmail.com>
kalispell, mt USA
Tuesday, January 22, 2008 at 16:07:32 (EST)

I am a 28=year old who was recently diagnosed with MoyaMoya disease. At this point I have very little knowledge of what this disease is, and am very scared of the upcoming surgeries that I am going to need to have. I have a million questions, and I would love to talk to anyone who has dealt with this disease. Please contact me if you are a survivor of this illnews. Thank you!!
jessica vandergraff <jessica_vandergraff@yahoo.com>
tampa, fl USA
Monday, January 21, 2008 at 21:30:34 (EST)

MM disease is associated with many other diseases, including the following "blood" disease, according to the web site at http://www.thedoctorsdoctor.com/diseases/moyamoya_disease.htm Aplastic anemia, Fanconi anemia, sickle cell anemia, and lupus anticoagulant
Kimberly Sanberg <geofandkim@yahoo.com>
Aliso Viejo, CA USA
Friday, January 18, 2008 at 14:59:09 (EST)

Can anyone tell me if there is any link between moyamoya and Lupus or any other blood problems? Or if there are any links between moyamoya and medications given to mom's with difficult pregnacnies? Thanks
Rebecca <rebeccaledkins@yahoo.com>
Richmond, Tx USA
Wednesday, January 16, 2008 at 19:08:20 (EST)

I am amazed with how well put together this site is. I lost my cousin, Amy (7 years old), in 1997. I've always been eager to find information on how I lost her. At the time I was only 8 and couldn't understand the situation. I'm glad to know people have a great survival rate with the surgeries. Good luck to everyone who suffers and their families. God bless.
Tiffany <afgirl6156@aol.com>
Cincinnati, OH USA
Wednesday, January 16, 2008 at 00:59:57 (EST)

My sister Jennifer is only 30 years old. She is a single mother of a 5 year old girl. My sister has been diagnosed with Moyamoya. She has suffered a sever stroke that has left her speechless and her hole right side pairlised. She has not had any surgery for this yet. I am in the same boat as DJ, I tried to learn about Moyamoya when all this happened and I could not find a thing, and the doters could not answer a lot of our questions. I think my biggest concern, out of many would be does her daughter, my brothers and me have to worry about the same thing happening to us? Jen is on http://www.caringbridge.org/visit/jenniferkinney to see more of her story and her up dates. This is a very scary thing to go through with a loved one especially knowing that it is not over yet. I have read some stores from everyone and it is keeping me hopeful. Thank you and good luck to all of you. Sincerely Lisa John
Lisa John <lkinney@comcast.net>
St. Paul, MN USA
Sunday, January 13, 2008 at 21:32:34 (EST)

I have a 16 year old Down Syndrome daughter. Last October she was diagnosed with moyamoya. Her tests show she has had a major stroke, although we don't know when. She has been having both tia's and seizures. We are trying to to figure out which she is having now. We go to Children's Hospital in New Orleans. They are trying to wait to do surgery until they figure which she is having. She has been through so much in her young life. I am a single parent and just don't know which way to turn. I just have to trust that the doctors know what they are doing. If anyone has any suggestion, they would be appriciated.
Margaret Cardello <margartcardello@cox.net>
Baton Rouge, La USA
Sunday, January 13, 2008 at 20:25:57 (EST)

I m not really sure what I am supposed to say here, or what I want to say here so I guess I'll just start. I am 27 years old and apparently was diagnosed with this moya moya thing. I just got home from the hospital yesterday so none of this has really started to sink in yet. I m not really sure what this disease is, actually my friends and family all know more about it then me. I do know that the doctors are telling me I need to get some bypass surgery or something in the next few months thought. From what I understand if I don t get the surgery I will continue to have these headaches, and I think they called them mini-strokes. I really do not know what I want to do. If anyone has any suggestions feel free to pass them along. I was also wondering what hospital/doctor was generally considered number one for the surgery if I decide to get it. Ok Thanx for your time.
Tom <bartho46@yahoo.com>
PA USA
Sunday, January 13, 2008 at 18:51:27 (EST)

Hey, I just wanted to commend you on this site! My mother was diagnosed with this disease in april 2007 and they beleive she is in the last stages. I had a hard time finding out info about it. I think it is awsome there are sites out here telling about it! Thank you!
Melody <southerncomfort101683@yahoo.com>
Lennon, MI USA
Wednesday, January 09, 2008 at 10:13:59 (EST)

My mother had been diagnosed with MM back in 80's at the age of 28, after she had her first stroke. Unfortunetly they did not know much about this back then and did not have the surgery. She was placed in a nursing home at the age of 30. She passed away in 1999 at the age of 42. Since then two of her sister were diagnosed with the same illness. One of them had the surgery and is doing great, the other did not have the surgery and is in a nursing home. I have been tested for this and was told I do not have it, but have a 15 year old daughter who is going to be tested in a couple of weeks, due to headaches, nauseau, vomiting, dizziness, etc.. The doctors say that the chances of her having it is slim, but they said that about everyone in my family which was not the case. I am more nervous now that it is my daughter being tested then when it was me!! Her chances are much greater, since it seems to run in the family!
Tobatha Raymond <tabby911@comcast.net>
Concord, NH USA
Tuesday, January 08, 2008 at 15:06:07 (EST)

I have never really shared my experience with anyone, but saw this site and decided to open up. My daughter was diagnosed with Moyamoya at age 4 ½ at the same time she was diagnosed with Diabetes Type 1. Most people ask 'why me' when they are told something that will change the norm of there life, but I am a firm believer to this day there is a very important reason. My daughter s father was diabetic and we were told when we became pregnant that there was just as much of a chance of any baby we had becoming diabetic as any other 'normal' family. We accepted that chance. When she started getting sick and losing weight then suddenly had a seizure and was taken to the hospital by ambulance, then transported to Children s Hospital in San Diego I was devastated. They told us her brain was hemorrhaging and that she would be put on life support. She remained on Life Support for over a week. Later they informed us that she was diagnosed with Diabetes Type 1 but that the hemorrhaging had not solely been caused by the shock of the high blood sugars. She was also diagnosed with something called Moyamoya . They didn t make a big deal about it at the time; they just told me it was a neurological disease that may have been partially to blame for the stroke she had suffered when she went into Ketoacedosis shock (shock from extremely high blood sugar for extended time). She survived her hospital stay of 26 days at Children s Hospital San Diego. I thank everyone there, every day, for the life they handed back to me. That wasn t the end though. After a short while back at home, she began having seizures again. They progressively got worse. It seemed to be triggered by her low blood sugars. They took me in and advised me that she would need to have brain surgery. I told them absolutely NOT! It was not an option. They had never told me how serious and progressive it was prior to that and I was in shock. They gave me the full details of what would happen if I didn t opt to have her get the surgery. After a long hard cry and much deliberation, I opted for the surgery. Being a single mother, at the time, of 3 was going to be tough. I had to be strong and explain this one to my oldest daughter (who had been diagnosed with it) and then her younger siblings. I did it, it was tough but it was far from the toughest thing I had yet to encounter. I opted to have the procedure done 2 months later when school got out for the summer as she was at age 8 and would have the next few months of summer vacation to recover. The procedure was to be performed on both sides of her head and it was explained to be a small incision on each temple underneath the hair line. The incision would be in the shape of a small upside down question mark and she would have a minimal 3 day hospital stay for the procedure. Long story short, it went well. I know my baby is not as young as some who have gone through this, but I believe in all those babies out there who are diagnosed. They were able to keep my daughters diabetes under control through out the procedure and the recovery was very tough, but she is a very functional child to this day. If it hadn t been for her diabetes hospitalization at age 4 1/2, I would have probably never known she had Moyamoya and would not have reacted so quickly to her abnormal behavior as I did when her seizures began. If I hadn t, her side affects could have been anywhere from paralyses to death. We are very fortunate to have my beautiful daughter today. I thank Children s in my heart every time I see her smile and hear her laugh. She is in Junior High now and doing well. She is taking all normal classes in academics and physical education. Not many know that she has been through what she has, but those who know her regardless love her immensely. She has touched many lives with her kindness and love. She has had another huge step in her recovery lately as well, she was weaned off her seizure medication completely as of November. We cried together. It was a huge step for us. To any of you out there who would like to share, please feel free. I am so touched as I read all of your feedback. It was nice to come across this site, as i felt so very alone and helpless being a parent of this disease. I am so thankful though that there is a treatment and it looks like it was very successful for us. There are so many other things that we could have been much more unfortunate to have. Sorry my story was so winded, but if you would like any other details on the procedure she went through, I would be happy to share.
Heather MacLeod <hb04041977@yahoo.com>
Vista, CA USA
Monday, January 07, 2008 at 17:29:41 (EST)

My grandaughter is 5 mo old and was diag. with mm in Nov, 2007. She had a seizure & stroke in Oct followed by 2 more strokes in Nov. She was transfered to Detroit Children's Hosp. where she had brain surgery. She's sched to have brain surgery on the other side next mo.. Wondering if there is anyone who's gone through anything similar out there whith a child so young? If so, how is he/she doing today?
Linda Cwynar <cwynarl@trinity-health.org>
Muskegon, MI USA
Sunday, January 06, 2008 at 06:17:04 (EST)

Hi, we are headed to Stanford for 2 surgeries for our 14 year old daughter. Thank you so much for this website. She was diagnosed on 11/30 and we were told we needed to find a surgeon asap. You made our research job so much easier. We are hopeful that she will be all right.
Chris Slowey <byoung10@tampabay.rr.com>
Tampa, FL USA
Saturday, January 05, 2008 at 13:15:21 (EST)

December 2007 I lost my sister to this disease and it has devistated my life. My family has had to deal with losing the strongest, most organized, and caring person we have ever known. My memories of her will be with me always and will help to sooth some of the pain but also give me strength. Love ya Sis. Jode
Jody Talon Carter <rrjcarter2006@sbcglobal.net>
Tulsa, Ok USA
Thursday, January 03, 2008 at 10:54:53 (EST)

 

 

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