Internet support for those diagnosed with Moyamoya Disease

Guestbook Archives from Jan 2007 - Dec 2007

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

Let other families know you're out there!

Go Back to the Current Posts Here

gday everyone, Happy New Year from australia, we look like we will be having a good one, after 2 months in hospital in Sydney, my Nephew has had 2 bypass operations one on each side of his brain, he just got home on Christmas Eve and all is looking good he has a lot of swelling and has a few head aches but on the up side he is very well. I would like to thank you all for your prayers and support through this journey, and I wish you all the very best. Love to all of you and I will keep praying for you all.Regards Marg
Margaret Clarke <>
Adelaide, SA Australia
Sunday, December 30, 2007 at 00:21:49 (EST)

Hi. My name is Barbara. I am a 56 (almost 57) year old black female. Though I have had several TIA's, numbness in my right arm and leg and severe headaches - and forgetfulness, I have just had a thorough checkup with a specialist at UAMS hospital. He is very encouraging and after I get the information he has suggested, I look forward to more detailed information. Of course I looked to internet and found this wonderful sight. My thanks to each of your for your sharing and my prayers are with all of us. More of my sharing later. I'm going to rest now, I'm getting tired. Barbara 12/22/2007
Barbara B. Hatchett <>
North Little Rock, AR USA
Saturday, December 22, 2007 at 19:32:16 (EST)

i wouid like any imformation and advise you have on dealing with this condision. cause my 7 year old was told he might have it. plus he was born with cleft lip and palete. so it has been a long rode but i would not change him for nothing. we have done all the test and waiting to see the specialist.
sandra morgan <>
sandyhook, ms USA
Thursday, December 20, 2007 at 23:30:18 (EST)

Hello, My name is Susie Yim. I was diagnosed with Moya- Moya during the year of fourth grade, I'm 19 years old. I didn't receive my surgical treatment in Standford stroke center, I received my treatment from Scottish Rite Childrens hospital. I was sick as a child with seizure, but as I got older I didn't have any problems until one day I fainted and I remember going to at least three or four different hospitals. I was grateful to find a doctor who helped me to survive this valuable life. I guess the symptoms for each child are different, but my symptoms wasn't as bad as the others. I'm a freshmen in college now and I'm living a wonderful life with my parents.I still do not know a lot about this rare disease that is why I wanted to do some research about it and I found this website. I hope that my story will help in some way.
Susie Yim <>
Alpharetta, GA USA
Thursday, December 20, 2007 at 19:22:56 (EST)

Hi there, My name is tom and I live in Howell NJ. I'm origibally from cedar grove NJ and have many friends and relatives in Nutley. Actually My fatherwas a teacher and coach in the High school for many years. I was diagnosed with MM almost 6 years ago following a bad stroke (doing much better now thank God). Please give me a call at 732-256-4090. I had my surgery in NYC. and have a lot to share with you. Don't be afraid to call! Take care, Tom G.
tom gallucci <>
howell, NJ USA
Friday, December 14, 2007 at 13:08:30 (EST)

My niece was diagnosed 12/10/07 with moyamoya in Antigua,WI She is to get a workup in nyc asap. Your information and courage are greatly appreciated. Thanks for sharing. God Bless you all.
michelle james <>
bronx, ny USA
Wednesday, December 12, 2007 at 18:23:42 (EST)

Two days ago my sister went to the hospital and is now in a drug induced coma. She has moyamoya, this all new to us. Any help finding out this about this disease would be helpful. I would like to know if myself and my brothers should be tested for this disease?? My sister has never been sick in her life...our family doesn't understand, I'm just lost without her. Please, help us with any information. Thank you, Tammie
Tammie <>
Morris, OK USA
Tuesday, December 11, 2007 at 20:10:34 (EST)

My doughter was diagnossed with Moya Moya on 9/7/2007. She has undergone one STA-MCA surgery to help whith her case. Her name is Andrea Carolin Garrett-McCoy and is 4 years old. She is due to have another STA-MCA surgery on 1/21/2008. All of our love and hope goes out to her, as well as anyone else who has moya moya - McCoy Family
McCoy Household <>
Texarkana, TX USA
Monday, December 10, 2007 at 22:27:23 (EST)

My 43 year old sister has just been diagnosed with MoyaMoya. She was in the hospital for about two weeks while all of the tests were being performed. They sent her home the other day and is now waiting for her surgery - it should be sometime around Christmas. Is there anyone in the metro NYC area that's been through all of this?
Genevieve <>
Nutley, NJ USA
Saturday, December 08, 2007 at 23:24:56 (EST)

I want to thank you for your sight my friends son was diagnosed with moyamoya today and your sight has cleared up many questions. He is a 20 year old young man with Down's Syndrome and has been having TIA's for the last couple of weeks. Again Thank you for your site. Jeanne
Jeanne Samuel <>
Riverside , CA USA
Friday, December 07, 2007 at 22:41:51 (EST)

hi i am very happy to hear your story because today i was told that in my MRA the Moyamoya disease came up now i am freaking out because i am 4 months pregnant and i guess nothing came be done yet well that is until i see my neurologist. enough about me thanks god you are doing well ang hopefully it won't happen again and thanks for your information.
yulemny colombo <>
ny, ny USA
Friday, December 07, 2007 at 20:36:52 (EST)

My best Friend ED had an event last week (stroke )and was diagnosed with MoyaMoya. We are all very scared but this site has helped me cope with some of my fears. He's recieveing great care in boston and since he has no computer there I am printing alot of this site for him to look at.Thank you all very much! Ken
Ken Vengren <>
Merrimack, NH USA
Monday, December 03, 2007 at 16:23:05 (EST)

Michael, I lived at San Ramon and currently moved to Portland OR for my work. We had a very similar situation. I would like to provide you with all the information that I can. Please send me a response back at my email address. Thanks, Jamir
Jamir Shaikh <>
Portland, OR USA
Sunday, December 02, 2007 at 21:15:41 (EST)

My nephew is having his first bypass on Tuesday at the Prince of Wales hospital in Sydney, then a week after he will have his second. He has been in ICU since I wrote in the guest book about 3 weeks ago, if you believe in prayer can you please mention James as we as a family need all the help we can get. Thank you all so much Marg
Margaret Clarke <>
Adelaide, SA Australia
Sunday, December 02, 2007 at 06:56:09 (EST)

Hi Micheal,My son has moyamoya he is 5 we found out this febuary and he has had surgery and doin well. Our email is left for you to contact us. xxx
nicola <>
newcastle upon tyne, uk
Wednesday, November 28, 2007 at 06:06:18 (EST)

I am the mother of 14 month old baby.interested in knowing whether anybody knows about any doctor who has experience just not in moya moya but also in tortous blood vessels.
sunaina poddar <>
Hyderabad, Andhra Pradesh india
Sunday, November 25, 2007 at 08:17:40 (EST)

Michael, I just read your post aobut your 7 yr old daughter.My daughter was diagnosed 5 yrs ago at the age of 5(she's 10 now).It was a tough road but she's doing wonderful now.I didn't find a way to contact you on your post, I'll leave my e-mail for you if you would like to,feel free to contact me with any concers or questions I may be able to help you with.Many prayers for your family. Mary Grace
mary grace <>
albany, ny USA
Friday, November 23, 2007 at 09:47:33 (EST)

I m reaching out to the community of this website for support of my oldest daughter who was diagnosed with moya moya yesterday. On the outside Kendall is an extremely healthy and active 7 year old girl. Coming from the neurosurgeon s office at the Oakland Children s Hospital, my wife and I felt as if our heart s were pulled out and thrown across the room. To accept that the most precious thing in the world to us is under harms way is really taking its toll on us. We are taking the steps to have surgery scheduled before December 21st 2007. I would really appreciate if other parents that have been down this road to contact me. My wife and I are extremely scared of what the future may hold. Mike,
Michael Keyser
San Ramon, CA USA
Tuesday, November 20, 2007 at 15:40:17 (EST)

My 18 year old nephew is at present in Prince of Wales Hospital in Sydney, and after a lot of testing the DR think he might have MoyaMoya. The family will be having a meeting on Monday with a lot of specialists to decide what to do. He is such a good boy and he has just completed his first year at Uni and he has missed his exams. I tried to look up the disease and and there is not a lot on it so thank you for your story. Please if anyone has anything else about this can you please email me. I want to ask so many questions but I dont know if I want the answers. Thank You Marg
Margaret Clarke <>
Adelaide, SA Australia
Saturday, November 17, 2007 at 18:27:49 (EST)

Thanks for the informational site. My friend has MM and now I can better understand what she's dealing with.
Orange, CA USA
Thursday, November 15, 2007 at 18:09:13 (EST)

My son was diagnosed with advanced moyamoya in 2001. He has had 4 bypass surgeries and a stent put in his neck to open up his carotid artery. He was 11 when he was diagnosed with it and he is now 17. He has had about 10 major strokes and 1000's of TIA's. This year he got to play in a Jr. Varsity Soccer game at his high school. When he was diagnosed we didn't have much hope, now he is remarkable, he still has lasting efforts of some of his strokes, but for the most part his life is normal
Karla <>
Clovis, NM USA
Thursday, November 15, 2007 at 13:50:47 (EST)

I am just updating on our 8 yr old son who was diagnosed with MM on March 22, 2007. Since our last post, Jose has had his bilateral MM surgery in California as is doing extremely well. His recovery was so fast, it was actually unbelievable. For all the newly diagnosed MM's and to the rest of us, keep your heads high!!
Daisy <>
Antonito, Co USA
Monday, November 12, 2007 at 22:29:32 (EST)

Where should I begin? I had a twin sister that was diagnosed with Moya Moya, she is now dead. She was diagnosed 4 yrs ago. She said that it would be impossible for me to have it, so I did not have myself diagnosed. Then at the beginning of Oct 2006 she had a small stroke. She was going to be okay. They decided to try another surgery on her, while under the knife she had a massive stroke, she never woke up and she died October 08, 2006. I lost my best friend and sister. During the week she had her mild stroke I began the testing. The doctors began testing me and rushing it. I found out 1 month later that I had the same disease. It was confirmed 2 months after that, when I went and saw the specialist in the field... It was the worst nightmare comes true. After that I was afraid and do anything about it. I was scared; I knew the end result and did not want that to happen to me. I didn't think my outcome was good. Until June came a long and I found out I had a tumor growing around my uterus and cervix. The doctor would not do the surgery, until I had a clearance from the neurologist. I saw my sister s doctor and he would take a look at my pictures. He called me a week later on a Thursday night at home. Telling me that I had to have emergency surgery and it couldn't wait. July 6, 2007 I had my left side done, and then on July 10, 2007 I had the right side done. Then 8 wks later I had the tumor removed and a full hysterectomy. I am doing fine, but they decided to do 2 more CTA tests again with dye. I am having some side effects, so we will see. Yes I am scared I am not going to lie. My sister has been gone from us for over a year now. I don't want to end up that way. But, I will continue to be strong as I always do. My bills are piling up. I am so far in debt from the surgeries and living off credit cards. I am just not sure how much more I can handle. The stress is over whelming. I am a single parent and that frightens me even more. My sister left 3 children and her husband has managed. What more can I say. Thanks for listening. Take care and would like to hear from others.
Shirley Dawes <>
Gilbert, AZ USA
Monday, November 12, 2007 at 02:30:03 (EST)

My name is Janette. I am 33 years old and Caucasian. I suffered a massive stroke at the age of 26 just after giving birth to my son. The doctors concluded that childbirth was the primary reason for the stroke. Since then I have had 2 more strokes, numerous TIA's and hemiplegic migraines. On October 21, 2007 I went to the emergency room while suffering one of my strokes. It was there that the doctors performed a CT on me. Of course they found nothing, until they did a CTA. That's when they found something abnormal and decided to admit me. After yet another MRI and MRA, I had an Angiogram. The neurologist on call happened to be from Japan and knew of this strange disease called Moyamoya. He asked me if I had ever heard of it. Of course I had not. He showed me the results of all of the scans run on my brain. In fact he said he saw it on the MRI from my stroke when I was 26. Now, I am happy that they know what is making me feel so run down all the time. I am scheduled to have a low flow STA-MCA bypass in December. At this point, they are hoping to only have to do the right side since it's more severe. But, until he goes in the doctor won't know if it's going to be necessary to do the right side. Granted, I have not ever had surgery before. Wouldn't you know my first would be on my head! I am just so glad to know that there are other people out there with this same disease, who have been through the surgery and are getting the help they need to get better.
Janette Sanchez <>
Fort Worth, TX USA
Wednesday, November 07, 2007 at 10:17:38 (EST)

Hello again I have a little update on Tabitha,she is finally in pt and is being fitted for a brace. She is having a big problem with her red bloods cells causing her bone marrow to work over time. She is not going to school,she has to keep liguids down every hr. She has to see her nero doc in Jan to get another mra done. thanks again for the webb site. GOD Bless
Dianna <>
Bham, Al USA
Tuesday, November 06, 2007 at 15:39:30 (EST)

I am Cash Harpp's mom. He was diagnosed in Dec. 2006. This site has been amazing. We have come into contact with 3 families and have kept in touch since we met on this web site. We are anxious to find out if there will be another Moyamoya get together like last year. Our families are from IN, PA, GA, and WV. We were hoping to use the convention as a way to get together. I am willing to help with anything to get things started. Sincerely, Abbe
Abbe Harpp <>
Merrillville, IN USA
Monday, November 05, 2007 at 22:48:56 (EST)

On 23 September 2007, my wife of almost 31 years, experienced a massive cerebral hemorrhage. After getting her to the ER and having an angiogram, the Radiologist told me that she had Moya Moya disease. She was immediately taken to surgery to relieve the pressure in her brain and after 6 days in the hospital and 3 1/2 weeks in a Rehabilitation Center, she is home. She still is experiencing some cognitive problems, but she can walk, talk and most of all she is still with me. It has been a very difficult time for me as I basically stayed with her while she was in the hospital and most of the time while she was in rehabilitation. By the way, I must also mention that my wife is Japanese and until she had her hemorrhage, we were unaware of the Moya Moya condition. I have her home now and while she seem seems to be physically OK (other than having headaches and getting tired pretty easily), she is still having a tough time remembering things and sometimes she seems to 'zone out' other words, when we are talking, she seems to go somewhere else for a few seconds. The doctor tells me that this in normal in this type of brain injury and it is just a matter of time before she has a full recovery. But even if she has a full recovery, she still has Moya Moya...and I wonder what is next? Any comments or advice will greatly be appreciated!
Lige Hundley <>
Dublin, Oh USA
Thursday, October 25, 2007 at 21:29:05 (EDT)

Hi, It's me again. I'm really happy to have the exchange of experience here with MM disease. My son was suspected as MM paitent since July/2007 and we haven t stopped the examinations for him since then. Last week he performed a DSA (Digital Subtraction Angiography) and by mid Nov, we shall have the report and we might also know what will be the treatment for him receive the surgery or not necessary. May God bless us all!
Tina <>
Macau, Macau
Tuesday, October 23, 2007 at 12:57:10 (EDT)

My daughter Jasmine is 13 years old and has Down Syndrome. On Sept. 14, 2007 she was playing like any other Saturday when she suddenly started thrashing on the floor and screaming. I thought she was having a seizure although she has not had one since before her first birthday. We went by ambulance to the hospital, had a CT scan and were sent by life flight to a hospital in Tulsa. The neurosurgeon called it MoyaMoya and said it is congenital. He also said sometimes these kids with Down Syndrome are just born with it and he said it is inoperable. Well, so far what I have seen here is that it has very little if anything to do with Down Syndrome and there is a surgery available. I don't really know what my next course of action should be. I am interested in all I can learn about this mysterious illness. Thank you, Tami
Tami Kalbrier <>
Nowata, OK USA
Thursday, October 18, 2007 at 22:33:41 (EDT)

I was diagnosed it 2001 and have had surgery and was wanting to chat with peole like me
Hopkins, MN USA
Wednesday, October 17, 2007 at 22:05:12 (EDT)

My only son, Alexander was diagnosed with MoyaMoya last Friday at Sheffield Children s Hospital in England. Alex is 5 We returned from vacation in Mexico 6 weeks ago, and the following week he stopped using his right arm, He was in no pain and not complaining about it. My wife is a nurse, and new something was not quite right. The following day my wife took him to the GP and she said he had probably twisted his arm. The following day he lost the use of his right leg and was unbalanced. His speech was slurred. Again she took him to the GP, who this time referred him immediately to the local Hospital. He first had a CT scan which didn t show any problems, but he was kept in overnight, and many blood samples were taken. He was then referred for a MRI scan for the following week. Alex had a MRI scan and we received the MRI scan results a week later. We was told he had a narrowing of a artery in his brain, and that he had experienced a mini stroke. Again we were referred to a Children s Hospital. We met the Neurological Consultant last Friday at the Children s Hospital who showed us the MRI scan and explained the condition of MoyaMoya. We were devastated. We have now been referred to Great Ormond Street in London and are awaiting an appointment. Now the shock is over, we are all OK. Alex is going to school and is as happy as ever. We have seen a slight improvement in the use of his arm, and the leg and speech are back to normal. Its early days, but I m now reassured by reading all the stories in the guestbook, that there is still hope for our little boy. After reading all the stories in this guestbook, I thought id tell our story so far. This is the only real internet site where we have been able to learn about the condition and know that we are not on our own. There is no sites based in the UK we can find. I will add an entry after our next consultation. Keep up the good work!
Andrew Barraclough <>
Derbyshire, UK
Wednesday, October 17, 2007 at 11:10:09 (EDT)

I have just been diagonised with moyamoya. I am waiting to get a call from Dr Day in Boston. Has any one used him for a bypass? How long did it take to set up your appt.? I am going nuts worring that I will have another TIA. I have called him 8 times am still waiting for a call back. Any one have a suggestion? Iris
fort myers, fl USA
Tuesday, October 16, 2007 at 14:01:36 (EDT)

WOW! I can't believe there are SO many of us out here with MoyaMoya! I was diagnosied in March 04. Every Dr I went to kept passing me up to another Dr. None of them wanted to deal with "it" & the symptoms; saying I was TOO high risk! welll.. helloooo ! I was so very blessed to have found a stroke dr up in Chicago @ Univ of Chgo Hosp, Dr Brorson. What a GOD send to know I wasn't going crazy thinking all the stuff I was going thru was just in my head.. ok.. it was & is.. but at least had a name for it! I know so many of you can relate to that one. I have small mini strokes every day now. A new Dr closer to home has me on Welbutrin & Cymbalta to counteract each other; they helped for a while, but now nothing. I can't focus, get motivated, wanna sleep A LOT!, no energy, feel so all alone. But now I know I'm not.. I also suffer from Osteogenesis Imperfecta (brittle bone disease), but Dr's around Chicago don't know if the 2 may be related. Also found I have a blood clot on each side of brain, & the arteries in the back of the head called "the circle of Willis"-the left side artery is totaly missing.. go figure that one. I just wanna give up at the age of almost 50 but have 2 wonderful teens that need their mama. That's what keeps me going. Anyone out there wanna chat sometime or email.. please don't hesitate to reach me. Many blessings to everyone & their loved ones.. susan rita
Susan Hathcock <>
mchenry, il USA
Monday, October 15, 2007 at 23:20:38 (EDT)

Hi, my son is 1 years old. He had pial synangiosis surgery in Boston in Feb 2007. He has had a difficult seizure problem. They have been under control since April and he was doing great since then. Oct 8 we brought him to his Hospital in Philadelphia due to abdominal swelling. He has developted ascites. They believe it is due to some other abnormal vessel in his abdomen. I just need to know if anyone experienced this. They said this is really rare and are still trying to come up with a diagnosis. Please pray for our little guy he remains in ICU. Any info please email me...
Amanda <>
Auburn, PA USA
Friday, October 12, 2007 at 10:25:14 (EDT)

Hi all I know its been a longtime since I have been on here. But I am still alive..Lots has happened since i have been on here..Chad and i got our own place with the boys, I got my SSDI and SSI approved finally. I was on Lunesta for sleeping for mind racing and I got the results from my surgery that I had in Boston on Jan 2006.. Well, where to begin..My son had his apendix out and i was at the hospital when Chad got the Call from Dr. Ogilvy saying that since the surgery and testing that there was no change and no new growth of the arteries and vessels in my brain..but the upside to that is that the surgery but my MM in some type of remmission like cancer, It hasn't gotten any worse or any better since May 2005 to present I have had 13 TIA's and 3 seizures. Which was expected. I had my most recent TIA about a month ago..Now getting back to myself as much as possible. But i wanted to let everyone know that I am still upright and breathing LOL Love to all!! If anyone has any questions PLEASE don't be afraid to ask ok?
Laura Stevens <>
Waterville, ME USA
Thursday, October 11, 2007 at 11:13:55 (EDT)

My name is Linee. I have had 2 major surgeries for moyamoya revascularization. I have had major problems after the two surgeries.I have been though alot and I can see alot of people have gone though what I have too,and im happy to know I am not alone.So if you have and questions or would just like to talk please feel free to e-mail me.
Linee Moniere Brouse <>
Potsdam, NY USA
Tuesday, October 09, 2007 at 15:04:12 (EDT)

My daughter, Emma, who is 8 years old was complaining of headache for 4 days with some nausea. She told me a few times that she was tripping or falling over when she walks but we, her parents, didn't notice it until today. She went to school saying her stomach hurt, pewked all over herself in class, and then when we immediately picked her up she had serious balancing issues. She is tripping on her left foot and unable to balance standing up. She has some mild slurred speech and one pupil is dilated slightly. We went to the ER. HER DAD HAD MOYA MOYA AT AGE 8, ,so we're insistent they rule that out. The doctor said the MRI came out perfect but no MRA or angiogram was done. They wanted to send her home but agreed to keep her for observation. A pediatric neurologist will see her tomorrow. Anyone have any good advice? What other tests could or should be done? Are we overreacting to insist on other tests when her dad suffered with the same thing at the same age?
Sondra Brown <>
Granite Bay, CA USA
Monday, October 08, 2007 at 21:02:39 (EDT)

I was just recently diagnosed with moyamoya after a cerebral angiogram.I suffered a stroke two years ago and after an MRI my neurologist suspected moyamoya but without cerebral angiogram they cannot diagnose. As recently, three months ago, I started manifesting some weird symptoms. I started to feel like I'm going to faint. I started having tremors, and having memory lapses. So I went back to my neurologist, and that is when he suggested the cerebral angiogram, which confirmed the diagnoses. I had consulted two neurosurgeons, both suggested surgery. One suggested immediate surgery; another said that it didnt have to be done yet. I would like to know what could possibly happen if I don't do surgery now. Do you have an data that suggests, that if you don't do surgery immediately, that it could progress quickly? I don't know if I should contact Dr.Steinberg, who was mentioned in this web page. I also don't know if he accepts my insurance. I'm concerned with the symptoms, because of the job that I do. I need to be focused. I work with people everyday, and I also work long hours. Please e-mail if you have any ideas or suggestions.
munchkjn <>
Brooklyn , NY USA
Sunday, October 07, 2007 at 23:32:47 (EDT)

Hi people! My name is Daniela, has 23 years and has one year was diagnosed with Moya Moya. In March I made the surgery here in Brazil, that from there uses one different technique of the U.S.A. Here the doctor makes some punctures in my head and is necessary only one surgery. Today I am very well, but at the time where I discovered, it had made wrong treatment with remedies and I had ischemic and much migraine. Kisses. Daniela (it forgives the bad English)
Daniela Bravalhieri <>
Bauru, São Paulo Brazil
Saturday, October 06, 2007 at 13:30:48 (EDT)

Hello. Just wanted to say hi and share a quick story with you all. I to have moyamoya and my surgery was almost a year ago this month. It was on my left side. Went in on a Monday morning at 5:30 and surgery was scheduled for 7:30. I went to the ICU unit about 10:30 that evening and not even 2 days later I walked out of Vanderbilt hospital here in Nashville. Not only that my Dr.s name was Dr. Mericle. He truly was a mericle....So you see there is hope out there...I have 50-70 % blockage on the right side now. But surgery is not scheduled as of yet. I'm doing just fine right now they say. Prayer definetly does help. I wish you all the best. Please think positive and don't ever ever ever give up with this nasty disease....God Bless all of you.
Tresa Overstreet <>
Nashville, Tn USA
Friday, October 05, 2007 at 23:38:03 (EDT)

I am Vietnamese and I had 2 surgeries 17 years ago when I was diagnosed with MOYAMOYA. But recently I have 4 episodes of vertigo and imbalance. I am still in the process of investigating. Has anyone in similar case and who has any problems after the STA-MCA by pass?
Friday, October 05, 2007 at 03:48:38 (EDT)

My name is Kathy, I'm 28 yr old and live in Shanghai China. My mother was diagnosed with internal brain bleeding 2 days ago. The cause of the bleeding remains uncertain till today. After several rounds of tests, the NMR results came out as suspicious Moyamoya. Today I had a brief chat with one neurosurgery specialist of the best & biggest hospital here in Shanghai, and that was my first time to hear the word "Moyamoya". As I was told this disease is a born disorder, I raised a question as if it was inheritable. (My grandmather was down by a major stroke in her late sixties, and several small strokes happened ever since that. ) The specialist didn't answer my question directly, but suggested me check on the internet myself. I'm a little scared by what I saw online.But all the Chinese website can only provide limited information regarding Moyamoya. I'm lucky to find this site, and after read thru DJ's story, I'm planning to have a complete check on myself ASAP. I've been suffering from terrible headache since my childhood, and I'm experiencing worse & worse memory problem recently. My mother is fine now as she has no trouble with talking, walking and everything else, but she was suggested to remain in bed for recovery for at least the coming 2 weeks. And DSA would not be safe till her total recovery. Given her age and current status, I really don't think DSA is a good idea now. But hopefully I can book an apointment with the neurosurgery very soon to get the diagnosis on myself.
Kathy <>
Shanghai, China
Thursday, October 04, 2007 at 12:15:18 (EDT)

Hi. My name is Kim. On Halloween night 1985 I had a major stroke. After months of having test run in the hostital the doctors decided that I had MS. My father went and found a MS specialist in Houston Tx, which is where he lived at the time. After several more months the doctors gave my family the news that I had Moyamoya. I ended up having two bypass surguries, one on each side of my head. A long story short, I'm now 35, and have three beautiful girls of my own. I have limited use of my left hand because of the stroke, but other than that I live a normal life.
Batesville, Arkansas USA
Tuesday, October 02, 2007 at 17:23:57 (EDT)

Hi my name is Stephanie and my husband was just diagnosed with moya moya disease last week. My husband is 25 an he has blockage on both sides of his brain. The only reason they found it was beacuse a blood vessel in his brain ruptured causing hemmoraging. He is due for his first surgery the end of november and the next 2 weeks later. I really don't know much about this disease and the doctors are baffled about how he came to have it. He is a perfectly healthy guy with no medical problems. The doctors couldn't give me much information on it b/c they really haven't dealt with it much. If anyone has any information that could help me understand this more I would really like it.
Stephanie <>
Byhalia, MS USA
Monday, October 01, 2007 at 15:46:06 (EDT)

My daughter is 4yrs old and has moyamoya she is facing surgery in Oct. 2007 at the Cleveland Clinic I am really scared that i will loss her she is my life i waited for 9 yrs for her to come along i could use some support here you can e-mail anytime and i will check my e-mail in the evening. If any of you have any information on mitrochandrial disease or the vonwillebrand disease please let me know for my daughter has both of those including moyamoya. thank you christa in WV
Christa Brosius <>
Duck, WV USA
Sunday, September 30, 2007 at 16:47:01 (EDT)

what happens if surgery is not an medical option
mo <>
maryborough, qld australia
Thursday, September 27, 2007 at 23:05:44 (EDT)

I was diagnosed with MM in 1999. I went to the ER complaining of a major headache I had for several days in the front of my head on my forhead. After testing they sent me to Mayo Clinic in Rochester Minnesota. That is where I was diagnosed. I have had 20 strokes that has left me visually impaired. I can no longer work and I'm afraid to have the surgery due to I was told I could have more strokes that could make my condition worse. They put me on seven types of medicine. I haven't had a stroke since 2000. The doctors said that my end of life would be a massive stroke. I wish there was something doctors could do to let me live a long life with my wife and children. I have learned to enjoy everyday as if it were my last. God Bless those with Moyamoya.
Gary <>
Wichita, KS USA
Thursday, September 20, 2007 at 16:21:38 (EDT)

I just was looking up information on this rare disease. I have a close friend whose mom was just diagnosed with this, and she wanted me to look up as much info as possible. Her mom is like a mom to me, and im hoping this website informs me alot. Thanks and god bless.
Marisa <>
nicholson, pa USA
Wednesday, September 19, 2007 at 23:10:22 (EDT)

I quick question- My 5yr old son has had surgery on left side and does need further surgery on right side but unsure as when. Is it normal to have headaches most mornings and afternoons also he is very tired during the day. My doctors are very good but know little about moyamoya and whats normal in life with moyamoya I am just learning myself. Thank-you.
Nicola Docherty <>
newcastle, uk
Tuesday, September 18, 2007 at 09:11:35 (EDT)

Hello, everyone! I am a previous MoyaMoya patient, 14 years old. For those of you that have kids or teens who are diagnosed with mm, I have created a website specifically for mm kids and teen patients. If they have access to the computer/internet and with parents' permission, they could visit my website at and read about my story, learn what they need to know, and communicate with other patients their age. thank you!
Breeana <>
Saturday, September 15, 2007 at 18:10:23 (EDT)

My 4yr. old neice will be having surgery on tomorrow.She was diagnosed with mm in March 07. She has had 2 massive strokes and several ministrokes. She suffered a mild stroke on Sunday which affected her vision. The doctors don't want to keep waiting around. My neice seems to be in good spirits even though she is too young to understand what's going on. I'm a little nervous right now. But I have faith in God and I have confidence in the neurosurgeons.
Angel <>
Thursday, September 13, 2007 at 16:51:13 (EDT)

Hi my name is Liz. I have decided it is time I put a letter onto this site as 2 people have emailed onto this site and have thought there are no other people in New Zealand with moyamoya disease. There definatly are.If anyone from here reads this please feel free to email me and have a chat.I have contacted 2 others from here so far so thats a good start.My daughter has moyamoya. She was diognosed at 17 yrs old. She is now 26 yrs old. She has had the bypass surgery at 18 yrs and some other burr holes done since then. She is doing great.There is a neurosurgeon in New Zealand that specialises in moyamoya disease. So there is hope here. Kindest regards Liz
Liz Cleaver <>
Taranaki, New Zealand
Thursday, September 06, 2007 at 20:28:53 (EDT)

Hi, I had STA-MCA bypass on the right on July 25th and then an EDAS on August. During the diagnosis process the ENT MD used my Left STA for a biopsy to rule vascultitis, so I had EDAS. I am healing well. Sometimes my words come out a scrambled, especially if I am tried. I know when it happens and I usually correct immediately. I can't go back to work til Sept. 17th, so I gonna go to Alabama and see my grandkids for a couple of weeks. Prayers for all.
Suzan Holsomback <>
Blythe, CA USA
Thursday, August 23, 2007 at 09:32:10 (EDT)

Hi everyone, my name is Debbie and I'm a 39yr old female who has just been officially diagnosed with unilateral moya moya. So far it's just on the right side. I feel like i've been diagnosed with everything under the sun until now.. This all started a year ago with numbness and tingling of my face, hands,stomach and migraines after working out. I went to the er after a soccer game because my vocal cords, throat arm and hand became paralyzed. the feeling returned by the time i got to the er. the began treating me for stroke with aspirin. they took me off the asoirin in August when one doctor decided that nothing was wrong with me. In September i returned to work within a week i began to lose the use of my hand over a weeks time, one finger at a time. not realizing what was wrong with me i continued to get up and go to work every day until a coworker pointed out that i should see a doctor because there had to be something seriously wrong. my doctor was able to get me into a neurologist within a couple of days. the neurologist was sure i had MS until i didn't respnd to treatment. he sent me to an MS specialist who was certain i had MS and began sending me for several different tests to rule out stroke.Finally on January 29,2007 i had an angiogram which showed the blockage. i met with a stroke specialist in march who mentioned moya moya but i had no clue that it was actually a condition i just thought that was the term they used to describe the angio picture. it wasn't until mid may when i met with the surgeon that i found out what it was. I as well thought it was called maui maui. the diagnosis changed again i was told it was not moya moya but just a dissected artery and both neuroradiologists that saw my mri and angio agreed. i then met with the surgeon as i already had the appointment scheduled. i was so thrilled i thought he was going to tell me to go home and start living a normal life again. i had a ct perfusion test done at the end of June. once again because it was already booked and they wanted to publish the findings because of the difficulty in diagnosing. i got to the surgeons office. He did not agree that it was a dissected artery and while my husband and i waited from 10:30am-3pm he consulted with two different neuroradiologists who agreed that this was moya moya. the results from the ct perfusion also showed that i have only 50-60% blood flow on my right side. I am having an STA-MCA bypass done. in fact my surgery was scheduled for tomorrow but it's been postponed until Sept 11 as he has someone else who needs surgery on an urgent level. Also the surgeon Dr. John Sinclair trained under Dr. Steinburg at Stanford so i'm very confident things will go well. He also seems that he knows what he's doing. i'm very excited about this although i will probably be terrified just prior to the surgery. i hope i'm able to connect with a few people who know what i'm going through. i'm from a small town and pretty much no one has heard of moya moya until me. thanks for listening Deb Smith
debbie Smith <>
Lyn, ON Canada
Wednesday, August 22, 2007 at 09:36:23 (EDT)

When I first heard the word "MoyaMoya" from my son's doctor, I can't believe that my son had got this disease. Then I search the internet and found this webpage. This is a rare disease that I really don't know from where I could get started the information. I think more families from here can help me. Keep in touch and email to me all about MoyaMoya. Thanks
Tina <>
Monday, August 20, 2007 at 08:28:15 (EDT)

Hello everyone. My name is Jackie. I am a 47 year old mother of 2 and was diagnosed with MM about 2 years ago. At first the doctors thought I had MS. After the birth of my first child in 1989 and a million tests later the doctors thought I had MS. I had temporarily lost feeling in my leg and arm. On a routine follow up MRI they discovered the "puff of smoke". Lately I've had the feeling of being not exactly dizzy or light headed but sort of like I m walking around with my head in a tank of water. I have been aware that there s successful/available surgery but have been afraid to have it done. In light of my new symptoms I am reconsidering and appreciate this website and all the info it offers. Thanks again and good luck to you all.
Jackie <>
bethpage, ny USA
Monday, August 13, 2007 at 02:01:09 (EDT)

After many bumps in the road, which included the professor and only man for the job in the entire country, going under the knife himself, two weeks later Leo's EADS finally went ahead on August 7 at Sydney's Children's Hospital in Randwick. All went well and the medical team were very happy at the way Leo bounced back so quickly. They now plan to repeat the spect test and if circulation looks improved on the right side of the brain they plan to do it all again around December on the left side. Thanks to all who wrote and sent well wishes, Leo Lagana and family. A special thanks to the Kidzwish foundation and Wollongong Limousimes who ferried us up and back even for the false alarms and the American Potentials Foundation who supported us from so far.
Pauline Lagana <>
Sunday, August 12, 2007 at 21:17:37 (EDT)

Hello everyone. My name is Holly, I'm 21 years old and have just been diagnosed with Unilateral MM. I had a stroke when I was 13 and to make a long story short there was a disagreement as to whether or not my stroke was due to MM. For the past 8 years my family, myself and my doctors have believed that my stroke was a spontaneous happening. That was until I had an episode this week that landed me in the ER. I had a small bleed in the basal ganglia that caused edema to form around it compressing the nerves to the right side of my body. After having an angiogram the doctors believe that the previous diagnosis of MM was correct and that my stroke was not merely a spontaneous occurrence. Although I am relieved to know that my condition has a name it scares me to think that for the past 8 years my condition has been progressing and it wouldn't have had to if it had been caught. Anyway I am glad to know there are others with this condition.
Holly <>
Saturday, August 11, 2007 at 18:59:57 (EDT)

I just had the right side done at Stanford by Dr. Steinberg and company. Everything went wonderful and I will be going back next week for the left side. I was diagnosed in late May of this year with bilateral MoyaMoya, prior to that I had never even heard of it and I have been a nurse for a long time. Prayers for everyone in need.
Suzan Holsomback <>
Blythe, CA USA
Sunday, July 29, 2007 at 06:23:16 (EDT)

My daughter is 5 years old and was diagnosed with MM in May 2007. She began having seizures in August 2005 and doctors thought they were childhood focal seizures. But last October her seizures became different. We and the doctors passed them off as small breakthrough seizures. In late January 2007 we found her lying face down on the ground alert but she could not speak or stand. We had an appt early in February with MRIs and EEGs to follow. When they came back abnormal, they sent us for an MRA and that is when she was diagnosed with MM. We were then sent to Augusta, Medical College of Georgia, to consult with a neurologist. Long story short, we did an angiogram on July 9th and the doctors perfomed the EDAS procedure on July 17th. She is doing awesome. Withing 48 hours of surgery she was in the hospital playroom playing air hockey and basketball. We were really unsure as to what to expect in the way of recovery. She has managed her pain with tylenol only. She did try some heavier pain killers right after surgery, but they made her sick. This website has been helpful in compiling information and putting it in simpler terms. Thanks
Kim <>
Valdosta, GA USA
Thursday, July 26, 2007 at 21:28:53 (EDT)

My neice was diagnosed with mm in Mar.07. She has suffered two massive strokes and several ministrokes. She is experiencing involuntary movements in her left hand. Both of her arteries are blocked on both sides. So she is facing two surgeries. She will meet with her neuro. on next week. My neice's parents are going to be asking alot of questions. They want to make sure they get the right team of doctors to perform my neice's surgery. My neice is currently undergoing speech and physical therapy. I sometimes wish I could trade places with her. I don't want to see her have to go through this surgery. But if that's what it takes to make her well then so be it. I am contact with others whose children are suffering from this disease. It helps alot to have someone to talk to who have gone thru this disease. Please email me if you know of a young person who has gone thru this surgery. I know every experience is different. Praying for all.
Angel <>
Thursday, July 26, 2007 at 11:40:32 (EDT)

Hello everybody, my name is Daniel and I am from Germany. It´s good to know that i am not alone . In march (this year) the doctors said that I have MM and I was shocked. It started with .........I couldnt move three fingers from my left hand..... same like DJ´s sympthoms. With 2years I hab blood-cancer and so MM is because-off radiation. Now I am 22 years old, had 20Years a great normal life and now that. At the end of august i will speak with the doctors of University Duesseldorf because of a bypass at the of 2007. I am very afraid and I could cry often, it`s very hard for me...........I am happy that most of you doing fine.God Bless And Thank you for the website. bye daniel
daniel <>
Mönchengladbach, Germany
Wednesday, July 25, 2007 at 04:52:04 (EDT)

Hi, I was diagnosed with MM disease this year in May. I have been having multiple TIAs since April 2004 and after a second Angiogram and Brain Spect, it was confirmed that I have MM. The illness caused the stenoses on both the right and left of my Middle Cerebral Arteries (MCA). I've done STA-MCA bypass on the right side just last week on 18th July and I'm recovering very well. The next surgery is scheduled to be in 6 weeks time but we have not fixed the date. For the left side, the plan is to do an indirect bypass, most likely EMS. After the surgery, i'm now taking Aspirin and Phenytoin (anti-epilepsy). I was on Warfarin for the last 3 years. I'm 31 years old this year, Chinese living in Singapore. I wanted to share my story so that in the event that there are MM sufferers in Singapore, they can contact me and we can form a small support group. It has been a long journey of acceptance from the moment i had my TIAs till i had my surgery. In all of this, i've grown better as a person - more mature and accepting of what life has to offer. I'm grateful to have the chance to get treatment before I have a permanent disability. My recovery from the surgery has been smooth. Please email me if you'd like to know more about my condition and treatment. Cheers. Winifred
Winifred Ling <>
Singapore, Singapore
Tuesday, July 24, 2007 at 01:35:15 (EDT)

Hello, We live in New Zealand and our daughter Rachell is 14 years old, she had a brain tumor at age 5, after surgery she had 6 weeks of radiation, she had kept well for the past few years, until March 2006 when she suffered a mini stoke and in April 2006 suffered a major stroke effecting speach and right side arm. After MRI scan it was confirmed she has Moya Moya disease. She had right side surgery in May 2007, and is doing very well so far. - This is a great sight as very uncommon in New Zealand, so have no support from any other families - are very interested in speaking to others with similar situation.
Leanne <>
Auckland, New Zealand
Saturday, July 21, 2007 at 07:52:46 (EDT)

Hello again, This is a little update on Tabitha Thrasher my grandaughter Tabitha has medicade and since she does , she is treated so unfairly by the system. She has been needing pt forever and here in Alabama it takkes foreve. Tabitha is also mentally impired diagoined by the Sparks Clinic in Alabama. To me Tabitha's condition has became worse. I will give my life if she could get better and be a normal child, she loves life so much. God Bless And Thank you for the website.
Dianna Hartgrave <>
Birmingham, Al USA
Friday, July 20, 2007 at 11:55:26 (EDT)

I am a 42 year old wife and mother of 3 who was diagnosed with MM 2 years ago. My Dr. at University of Illinois at Chicago is Dr. Fadi Charbel. I had my first STA-MCA bypass 8-05. The original plan was to follow with the right side bypass 30 days later, Unfotunarely I wound up with an infection of the left side and had to have the cleanup surgery in 9-05. The right side bypass was done 90 days later in late 12-05. Feeling great now , however in 11-06 had a heart attack they say was due to the MM. A stent was put in and had an angio where they found the left bypass is now not working at all, however the "normal way of flow" is working about 60%. I am to watch for original symptoms like memory loss and poor eyesight and small stoke like symptoms returning. And be honest about them when they return. Then we will go back to the drawing board bypass wise I guess. I hate to put my family through this again,but I know they would rather have me with them than without. Has anyone out there had to have repeat surgeries? How did that go and how far apart were the surgeries? Last but not least Lisa if you are still out there give me a ring.
Thursday, July 19, 2007 at 20:53:51 (EDT)

hello everyone guess what savannah will be stroke free for 2 years on aug 12 2007 im so happy she is doing so great she is a/b student in school some people celbrate ann birthdays are birth of a new baby but we count each day as a new day for us a new day that is stroke and seizure free i thank god for my angel even though she has been sick since she was 14 months and has had 10 strokes iwouldnt take a perfect healthy baby for her i love her the way god give her to me she has taught me so much in life and its to short she has taught me to be more patient and kinder.for her to have been whats she is been thur she so patient and easy going she is so layed back but the most important thing about this moyamoya is you have to drink alot of liquid and the more you drink the better off you are and make sure you take your asprin every day she doesnt let to much bother her. again i cant thank dr michael scott and most of all god enough for taking care of my littlt angel they both are the best i love you both. the abbruzzo family.
Wednesday, July 18, 2007 at 01:19:35 (EDT)

My 5 years daughter had the 1st left side surgery in Korea. The 2nd surgery will be done in 8/7/07 at Severance Hospital one of the best hosp for moyamoya disease in Korea. We are living U.S.A. however, we decided to come to Korea and had the surgery because of many reason. I read your web-site and there is the best doctor in USA too. How can we contact them? We pray every moment.. please help..tks.
smilesunnie <>
fullerton, ca USA
Monday, July 16, 2007 at 02:01:04 (EDT)

I am sitting in a hospital now with my 7 yo nephew fighting for his life and just found out that he has Moyamoya. Please send us any infro you can on this to my email address. We can use all the infro and help now. Please keep Darin in your prays. He has suffered a stroke at 3 this morning. He has been having strokes all along and no knew. But this one is a big one.......Thank you, Kay
Kay Samz <>
Rhinelander, WI USA
Saturday, July 07, 2007 at 18:12:50 (EDT)

Iwas wondering if there are any foundations formed for moyamoya research. Ever since my son was diagnosed at 7 month old, it has been in my mind to find out. If nobody knows of any, would anyone be interested in starting one, or doing something regional or something like that? Sincerely, Abbe Harpp
Abbe Harpp <>
Merrillville, IN USA
Friday, July 06, 2007 at 17:44:46 (EDT)

Update- Leo will be undergoing surgery on July 17. Thanks to all of you that reponded and helped my husband onto the same page, making it all possibile. GOD BLESS! Pauline Lagana
Pauline Lagana <>
Thursday, July 05, 2007 at 21:36:26 (EDT)

Can anyone tell me what to except after surgery? My six year old daughter has moyamoya and has had some issues since surgery but we don't know what all to except, like will her learning suffer. Thanks, Rebecca
Rebecca <>
Richmond, Tx USA
Thursday, July 05, 2007 at 01:32:26 (EDT)

Unbelievable! I watched the Discovery Channel last night and I do now believe my son who is 27 yrs. old, has Moyamoya and not Cerebral Palsy!! I am dumbfounded because other than the back and forth eye movement (which I could of forgotten after all these years, he has all the other classic symptoms, especially the uncontrolling crying and the arms and legs stiffening, and he is paralyzed on his left side and suffers from learning disabilities. Of course they crying and stiffening are gone now due to his age. Is there a specific test that doctors can do to distinguish if it is indeed Cerebral Palsy or could it be Moyamoya? Please get back to me. I live near the best hospitals in the country (Boston). Thanks so much.
Wednesday, July 04, 2007 at 02:18:54 (EDT)

My 4 year old neice was diagnosed in March 2007. She suffered three strokes. She is currently undergoing speech and physical therapy. Thankfully, she hasn't suffered anymore strokes since her intitial strokes. She is scheduled for special testing MRI? on Friday. Then she will see her neurosurgeon the preceding Friday. I really don't know when or if the doctors will perform surgery. I can tell you this disease is scary. My neice has to be constantly watched. I will continue to pray for all who are affected by this disease.
Angel <>
Tuesday, July 03, 2007 at 15:47:32 (EDT)

My 4 year old neice was diagnosed in March 2007. She suffered three strokes. She is currently undergoing speech and physical therapy. Thankfully, she hasn't suffered anymore strokes since her intitial strokes. She is scheduled for special testing MRI? on Friday. Then she will see her neurosurgeon the preceding Friday. I really don't know when or if the doctors will perform surgery. I can tell you this disease is scary. My neice has to be constantly watched. I will continue to pray for all who are affected by this disease.
Tuesday, July 03, 2007 at 15:46:12 (EDT)

Hello When my granddaughter Tabitha was born she was born with the blood disease phersysotis she was having many tia which were diagnoised as seizures when she was 3 she had her stroke then she was diagniosed as having moyamoya. She had her spleen removed because of her blood disease and her gallbladder. Tabby has been on asprin theapy since her stroke. For 4 years she has had many headaches and trouble walking and talking. The doctors here in Alabama has never mention her having brain surgery. If anyone can help us understand more please email me back God Bless Everyone On this web site
Dianna Hartgrave <>
Birmingham, Al USA
Tuesday, July 03, 2007 at 14:15:39 (EDT)

I was diagnosed with moya moya disease in 1980. It was definetly a struggle to have the Doctors and hospitals to believe I had a serious problem. They all believed I was a hypocondriac that I was experiencing "Migrains" being hospitalized after a week of observation and testing they made me go home telling my parents that they could find nothing wrong with me. After being released approximately a week later I had a major stroke. Went back to the emergency room, they readmitted me into the hospital. I had another CT scan. I was blessed to have a wonderful Neurologist take on my case, Dr. Victor Robert. He had told me on the previous CT scan that I had done there was no signs of a stroke, but the one that was reviewed at this time was showing that I had a major stroke. Had surgery in Orlando, a couple of months later. With post angiography's there was little improvement from the bypass. Dr. Robert referred me to Shands Teaching Hospital, in Gainesville Florida. To a wonderful Neurosurgeon Dr. Aurthur Day. When he had me walk down the hall in his office, and the exrays of the angiography, he told my parents that I needed another surgery. To make a long story short I had 4 different procedures. The last one was when they removed a bloodvessel in my leg to do the bypass with. In conclusion I am a 48 year old survivor of this disease. I have some residual effects from my stroke, my mouth is droopy on one side and my temporalis muscle was severed so I cannot raise my eyebrow, but overall I am very proud of my outcome I had attended school at age 46 and was on the Presidents list for 3 quarters and on the deans list for 1, my intelligence level has not been sacraficed. Hopefully this will be a ray of hope for parents that have children diagnosed with this disease "good luck" please contact me if you have any questions.
peggy wolfe <>
apopka, fl USA
Tuesday, July 03, 2007 at 07:20:59 (EDT)

We live in Richmond, Tx. outside Houston, tx. our 6 year old daughter was diagnosed in March 2007. Is there any support groups in this area? Thanks, Rebecca
Rebecca <>
Richmond, Tx USA
Monday, July 02, 2007 at 20:02:41 (EDT)

Just checking things out. My wife is in the process of being diagnosed with Moya Moya. 95% sure that's what it is. From all the info here and other sites sounds like surgery is the way to go. Thanks for the info. Jeff
Jeff Miller <>
Portland, Oregon USA
Monday, July 02, 2007 at 18:32:30 (EDT)

Hello my name is Rebecca. My first thought when I found this website was where were you eight years ago? It was discovered that I had Moya Moya in 1999 when I was 13. Although I did have a stroke when I was eight years old it went undiscovered. For three or four years I suffered with the condition. In England this meant that the affects of the condition happened whilst I was doing my GCSEs. However it was my first year at college that the worst. I suffered very badly during this year. The affect of this was that the only way for me to continue college was to have the operation. I am not what operation I had, at least in its technical name anyway. I had the operation in the summer of 2002. That September after recovering from the operation I returned to college and despite the college I got my A levels and went on to University. I now have my degree and have thankfully not suffered from any symptoms of the condition after the operation. I would like to say thank you to DJ for this site and good luck to everyone else who has the condition or knows someone with it.
Monday, July 02, 2007 at 14:41:46 (EDT)

Hi, my son had extracranial-intercranial bypass 3 weeks ago and is doing great now he is back to school and his cheeky self. He is now on asprin for life and will eventually need surgery on right side but not yet. He lost the use of his right hand which is getting better and bizzarly his speech has improved from befor stroke. Hope everyone is well xx
Nicola <>
newcastle, uk
Sunday, July 01, 2007 at 08:14:28 (EDT)

My 7 year old grandbaby has moyamoya she had a big stroke at age 3 she is currently on blood thinner. Her leg has became weaker over the 4 years caused by the stroke.
Dianna Hartgrave <>
Birmingham, Al USA
Friday, June 29, 2007 at 16:43:02 (EDT)

Hello, my name is Petra and i come frome Slovenia.I got moya moya when I was 3 years old.I struggle with it for 13 years. 16 years ago the doctors in Tokyo preformed EDAS on me. Moya moya surrender unconditionally 12 years ago.After that I finished university. There is a hope you see... Don't give up...
Petra <>
Jesenice, Slovenia
Thursday, June 28, 2007 at 11:55:49 (EDT)

Daisy: There's a hotel in Redwood City(not far from Stanford). Cost is $60 per night tax included. You can request a fridge & micro to be put in your room. Also, most hotels offer discounted rates if you tell them you've a patient at Stanford. It was better than the govt rate I was first quoted. I'd be happy to help with any other info if I can. My son just underwent bilateral STA_MCA by Dr. Steinberg. So, if ya just want to chat or yell or whatever...give me a holler... There's LOTS of support me on this one. Josephine
Josephine <>
Ft. Polk, LA USA
Wednesday, June 27, 2007 at 04:22:16 (EDT)

hi my name is hilary and i have a daughter with MM.She was diagnosed in 2004 after having two tia,s and has had two lots of edas sirgery. She was doing ok but seems too be having more headaches and getting more tired I pray for her everyday. if you can help us please get in touch. thank you so much and god bless you all
hilary yates
leicester, midlands uk
Tuesday, June 26, 2007 at 17:47:44 (EDT)

The Day after my 19th Birthday I awoke from a nap in the middle of the day and decided to clean up my dorm room and make myself some lunch. After this I took a drink of water only to have it dribble out of my mouth. Shortly after putting my drink down the world began to spin as parts of my body began to become numb. My roommate, our friend and myself all got a good laugh at how I was talking while the left side of my face was numb. I began to tie my shoes and realized something was wrong, as I couldn't get my arm to move any more to finish tying my shoe. I had my friend get my car and my roommate helped me get down 3 flights of stairs to get there. By the time the car came around I was feeling normal again. I still insisted that I was driven to the hospital. I then spent the nights waiting for the CAT scan results only to learn that they showed nothing wrong. I was referenced to a local neurologist. At the time he realized that I had a TIA and wanted to know why. After several months of tests, (EEG, Heart monitor, MRI and a few others I can't even remember now) the doctor told me that he still didn't know what the cause of my TIA was. During this time I only had one more major experience where I was forced to sit down because my left side went numb again, but it only lasted a few minutes. My pinky, ring and middle finger of my left hand would go numb occasionally, but nothing "serious." My neurologist knew that there was some kind of blockage or possibly a collapse of an artery (which wasn't right, but wasn't far off). He then recommended me to the Barrow's Institute in Phoenix, AZ. Finally after almost a year after the TIA I was able to get the Barrow's and had an angiogram, with a next day bypass if necessary. After the angiogram it was deemed necessary that I have a bypass. I was told that the vein had shrunk (I though of it like a plastic straw near, but not in a flame. Try it out and you'll see what I mean) and that the cause has possibly a Moyamoya disease... What? That was the common look of everyone in the room. It was shortly explained as a rare disease, and that it was the cause... and that's it. The bypass was a success and I haven't had any problems since then, but I am do for a check up as it has been almost a year later. Until today, until this website I have know little to nothing about my disease or it's affects. I'm glad to see that there are others out there who know what's going on with us all and I hope to get connected with you all. I'll keep you updated as things happen.
Brandon <>
Saturday, June 23, 2007 at 05:21:19 (EDT)

Just an update on my 5-year old, Rhylley. We've been in touch with Dr. Scott (Boston Children's...) and after sending him copies of Rhylley's 4 MRI/MRA's--we've decided to go ahead & get things started on him having the surgery. We meet this Tuesday with Rhylley's neurosurgeon here at DC Children's to get the angiogram done here, but after that, things will be in Dr. Scott's hands. (After all the necessary *bleep* is done with the insurance company!) Rhylley's MRI's have shown some change since the beginning of this disease--but thank the Good Lord, he hasn't had any strokes or any major incidents since being diagnosed and starting in aspirin...Thank everyone from this site that has wrote me & given words of advice, support and just a shoulder to cry on. You're all wonderful! I'll keep you updated on Rhylley... Lynette
Lynette <>
hagerstown, md USA
Saturday, June 23, 2007 at 00:45:49 (EDT)

My daughter was diag. w/MoyaMoya May 25th, 1999. She was 3 years old. She is now 11. She woke up one morning fussy & complaining her head hurt. When she got out of bed she fell, (there was nothing for her to have tripped on), I picked her up & she fell again. After picking her up a second time she begin to walk with a left limp & her left arm was drawn in. I rushed her to Texas Childrens Hosp. in Houston, TX. She had experienced a stroke on the right side of her brain. After a week of test she was diagnoised w/the disease. She had a dural flap inversersion on the right side of her brain in June 1999, that is where they take a scalp vessel and place it into her brain to become her main blood supply vessel. Dr. Robert Dauser performed the surgery. We were told it would take 1 year for that vessel to fully grow & supply blood to top right side of her brain. Meantime she had lots of mini strokes. Then in August of the same year (only 2 months later) she begin having right sided weakness. It was horrible watching my vibrant 3 year daughter's deteriate to the point she could not even sit up nor walk anymore. So Aug 31, 1999, Dr. Dauser performed the second surgery on the left side. The vessels were'nt as damaged as the right so he was able to create a burr hole which he said would supply better blood flow to the leftside of her brain. He said he did not operate on both sides at the same time because there had to be damage (loss of blood flow) for the surgery to work. With so much damage to the brain, my daughter Lori is in a wheelchair today. She cannot use her left arm, her wrist is very tight & drawn. Both her legs experience severe spasticity. She undergoes Botox injections every 3 months to help loosen her legs and left arm. She also has seizures (startles real easy & has her legs straighten out & her left arm extends itself). In Oct 2007, she will undergo a 24 hr Epilepsy Monitoring, to verify these are truly seizures. Her speech has been effected, speaks 3-4 words at a time, her vision & is now mentally challenged. Its difficult for an optomologist to give her a proper eye exam but they believe she has cortical blindness. With all this being said, she is a very happy girl. She loves to play with toys in a repetitious way, in and out of a basket. Her favorite thing to do that with is Dominos. She's very friendly, says "HI" to passing cars & people and loves to give hugs. God has truly blessed her in my life. She is a joy despite some of her temper-tamtrams, (she hates to change her clothes & diaper). What go me thru all is? God will never give you more than you can bear. She is my special angel he has given me, & I'm gonna do my best to take very good care of her. Thanks for building this website!! There's wasn't much on line for such a rare disease in 1999. I finally saved enough money for a computer just to be able to log on to this site and also find other sites to help her. God Bless Everyone...I know it can be tough sometimes.
Nora Reyes <>
navasota, tx USA
Wednesday, June 20, 2007 at 01:13:58 (EDT)

Hi DJ,my name is Terry-Anne,Terry for short.I had a mini-stroke in 2001.I lost the left peripheral vision in both eyes and I am registered as partially sighted.My remaining sight is also now detriating quite a lot.I had the operation,the right-sided burr hole in 2003,I have been fine since the operatiion.Will I definnately end up with a bleed on the other side of my brain at some time in the future.Professor Mendelow at Newcastle General Hospital,does not want to operate on the left side of my brain until I get worse,as he said the burr hole on the left side is very close to the speach box,and could leave me speach impaired too.I visited this site in 2001,but didn't make contact.Part of me was very frightened of what I might find out about the desease.I did delay having the operation for a week or two.Professor Mendelow reassured me that he had done a lot of these operations.He and all the staff were briliant.I was supposed to be in hospital for a week.My lungs collapsed during the operation so,I had to stay in for two weeks.Never mind I have a great husband and two smashing teenage children.My stroke took place when I was aged 37.
Terry-Anne Nichols. <>
Cleveland, Britain
Saturday, June 16, 2007 at 19:02:46 (EDT)

I was diagnosed last week with Moya Moya Disease. I am 47 year old Mother and Grandmother and I want Dr. Steinberg.
Suzan Holsomback <>
Blythe, CA USA
Friday, June 15, 2007 at 15:52:08 (EDT)

Correction on my last posting. I meant to say Emily now has had numbness in her left hand twice so I'm concerned that the moyamoya has spread to her right side.
Lori Schnars <>
Charlotte, NC USA
Friday, June 15, 2007 at 14:30:54 (EDT)

Hello, my sweet little girl Emily was diagnosed with MoyaMoya in May 2006. She had a major stoke two days after her fourth birthday. She had symptoms since she was 2 1/2 but she was misdiagnosed several times. Now looking back at what the doctor thought was petite mal seizures then ordered an MRI. The neurologist said it showed something that she thought was sinus conjestion on the MRI in her head. So she sent us to an ENT surgeon to have her adnoids taken out and a new set up tubes put in her ears. The frozen like episodes (now looking back I know they were TIA's) continued every once in a while. Then when she was about 3 1/2 in early 2006 she started complaining that the back of her neck was hurting. I discussed the pain with her pediatrician only for her to tell me to buy a flatter pillow for Emily. I told her that her pillow was already flatter. Then on May 11th, 2006 she awoke in the middle of the night with a severe headache that lasted for several hours. Come morning time she started throwing up so we just assumed that she had come down with a stomach bug. I left her home with her father for the day while I went to work. When I arrived home at 5PM I noticed she was having trouble walking and talking. I brought her right away to her doctor thinking that maybe she was just dehydrated. Her pediatrician said get her to the hospital right away something is really wrong such as a tumor, stroke, etc. The nearest hospital didn't have the resources to diagnose her and care for her so they transported her by ambulance to CMC in the city. They did an MRI and found out that she had a stroke on her left side of her brain that affected her right side of her body. They kept her for a couple of days and sent her home on Lovenox injections for me to give her. Within a week she had another headache. I rushed her back to the hospital only for the ER docs to tell me nothing was wrong with her and sent her home and acted like I was a neurotic mother. The following Friday she was due for her follow up MRI. While in the recovery room her hemotology-oncology doc came in to give me the news that she indeed had another stroke and the first stroke in her brain now looks worse. They admitted her and did an angiogram and found out her left corotid artery was constricted in three areas over 90%. Within a few days the docs came into her room saying we are going to send her home where she's more comfortable. They said that there's nothing anyone can do for her that she was about to have a major stroke that was either going to paralyze her permanetly or kill her. I said no please find a surgeon somewhere in the world that will operate on her. I called Dr. Sanders her hemotology doc daily until he told me he found a surgeon. He originally thought they would put a stint in her artery to open it up. He had referred us to Dr. Berenstein at Roosevelt in NYC but Dr. Berenstein then referred us to his colleage Dr. David Langer who explained to us she would be getting the EDAS procedure. After fighting with our insurance co. for a couple of days we were able to get a medical flight approved to NYC and then an ambulance brought us to Roosevelt. We arrived on June 14th and she had her surgery on June 20th. It was a long recovery in the hospital. We were transferred back to CMC in Charlotte towards the end of June and she was released on July 3rd. Emily received speech and physical therapy and is now back to almost 100% speech wise and is 100% physically. She went back for testing in Sept. and at that time Dr. Langer was pleased with her progress of the the blood flow. She again went back in January but at that time he was said he was disappointed because her blood flow hadn't increased at all since Sept. He said he wasn't too worried because neuro wise she was doing fine. This past April she experienced numbness in her left hand and then had some trouble with talking for a couple of days. An MRI was done and it didn't show any new stroke damage so they said she's probably just fine. In May she had more numbness in her left hand and trouble with her words again for a couple of days. Another MRI was done and they said no new strokes are showing. About a week later she woke up in the middle of the night with a severe headache the CT they did looked fine they told me. Two nights ago she woke up again with a headache around 1AM that lasted for several hours so I brought her to the ER and they did a CT scan which again showed nothing. They gave me instructions to not let her listen to loud music and noise and to have her lie down and rest when she gets a headache... What do they think she was doing at 1AM partying it up and listening to loud music at the age of five!!! Anyways, I am really concerned that the Moyamoya has now started to affect the right side of her brain since she has had numbness in her right hand twice in the past month. I think I might end up sending a copy of her records to either Dr. Steinberg or Dr. Scott to get their opinions. Please email me to let me know if you have a child that has had it spread to the other side of their head. Also, I am now getting my 9 year old tested on Tuesday due to her having pains in the back of her neck. Please say a prayer for both of my girls.
Lori Schnars <>
Charlotte, NC USA
Friday, June 15, 2007 at 14:22:47 (EDT)

My sister was diagnosed with Moyamaya at age 47 she is now 61. But starting now again to have mini strokes. She has been a strong fighter on trying to over come the diease. I think the time is getting close where she will not be abe to keep going on.
Rebecca Herron <>
Rineyville, Ky USA
Thursday, June 14, 2007 at 21:04:58 (EDT)

My name is Aromsack Sonethongkham. I am a 45 year old male. I had a brain hemmorhage in October 2006. While looking for the cause of the hemmorhage, the Doctors at TMC discovered that I have moya moya decease in my internal corotid artery and 4 dural arteriovenous fistula in the external corotid. I have since had both problems fixed. I had an endovascular done on March 21st and STA-MCA on March 22nd. I am recovering from the operations and back to work, but have not had any post OP tests. I am currious if that is normal. Is there any test that will instill some confidence in me that I am now healed and healthy? The Doctors at Barrow (Dr. Spetzler) told me that they did not want to see me again for another 3 years. Family and friends, please let me know if there's any tests that will tell me how success were my operations and what are the DO's and Don't for someone in my situation. Thanks in advance for information and advise. Sack from Tucson, Arizona.
Aromsack Sonethongkham <>
Tucson, AZ USA
Saturday, June 09, 2007 at 03:26:55 (EDT)

Hi!! This is Daisy and had a couple of questions for anyone out there who might be able to help. My 8 yr old son Jose is ggoing to be having a bilateral STA-MCA sometime this summer in California. The surgery will be at the Stanford Hospital in Stanford, if anyone can help me with finding LOW COST housing for the time we are going to be there. I have found several hotel/motels, but they are still pretty high in cost. I'm wondering if there might be apartments or houses for rent on a week to week basis. THANK YOU FOR YOUR HELP!! Daisy
antonito, co USA
Friday, June 08, 2007 at 13:57:02 (EDT)

Paul just completed his second bypass surgery at Stanford University with Dr. Steinberg. Everything went well.
Paul Rager <>
Little Rock, AR USA
Thursday, June 07, 2007 at 14:42:14 (EDT)

Hello, my name is laura and 12 years ago i was diagnosed with moya moya disease I was ten years old and vacationing with my family and I collapsed I luckily survived two stropkes and I'd like to enter my story as an example that moya moya can be survived I'm currently twenty two years old
Laura Andersson <>
Delaware, OH USA
Wednesday, June 06, 2007 at 01:17:42 (EDT)

My sister was diagnosed with moya moya but she is 62 years old has any one heard of this.
Diana Roque <>
Indianapolis, in USA
Sunday, June 03, 2007 at 20:50:59 (EDT)

My daughter was diagnosed with Moya Moya when she was 2 years old and Allageles Syndrome 2 years ago, she is now 18. She had 2 surgeries in Canada and 1 in San Francisco before she was 3. She is on a blood vessel dialator. She has been stroke free since she was 10. We have been asking for a long time if she could have children and the drs would say "we will talk about it later" Well later is here, she is now 7 weeks pregnant and they don't know what to do. Has anyone out there had children, does anyone know how dangerous it is. She is also a track and field athlete. She is on the national development team. She is very fit and would like to continue to train. Anyone who could help with info, I would really appreciate it. We have written to the dr you all talk about and when he found out we lived in Canada he never wrote back. We are not sure why.
Cathy Leavitt <>
Nanaimo, BC Canada
Saturday, June 02, 2007 at 11:20:43 (EDT)

Does anyone have any info on moyamoya and pregnancy. I am 9 to 11 weeks along and pregnant. I am on lovenox daily. I was dx in 2005 and have no sx.
Friday, June 01, 2007 at 11:14:27 (EDT)

Our 6 year old son Leo has been diagnosed with Moya Moya which we was told is extremely rare yet he is also afflicted with a rare genetic disease ie Majewsky's microcephalic osteodysplastic primordialdwarfism Type II. Leo is extremely small in stature and although 6 years in age appears the size of your average 1 year old toddler. I have been told that there seems to be a common occurence between primordialdwarfism and Moya Moya, due to the apparent small size and miniture everything they have in common. I know of a few cases in NZ and USA. I'd love to here from anyone else as Leo has been recommended corrective surgery and I am keen to get it underway however leo's father is still in need of convincing. I don't believe he realises the severity of the disease and it's progressive nature, HELP!
Pauline Lagana` <>
Thursday, May 31, 2007 at 21:32:15 (EDT)

Hello: My daughter was diagnosed in April and will travel to Stanford June 10 for two more tests and to meet Dr. Steinberg...we are looking at surgery sometime in late July as we understand he booked up through the middle of July. She is 39, is perfect health otherwise, did all the right things, diet and exercise, etc., so moyamoya is not choosy about it's victims, right? She lives in Southern California and I live in Gainesville, Florida, but I plan to be with her for the surgery...what I would like to there someone here in Gainesville who has experienced the process who would be willing to share his/her experiences with me? I know there is a neurosurgeon at Shands who does this procedure, but it would be impractical for her to come here for it because of follow-up etc....please contact me if you have had surgery at Shands.
sandimom <>
gainesville, fl USA
Wednesday, May 30, 2007 at 09:04:15 (EDT)

It's taken me several months to post on here, but I've been reading postings since I first found this site back in March '07. I was diagnosed with Moyamoya in Nov '04 after having suffered a stroke in June earlier that year at the age of 28. I spent hours on the internet, crying and desperately trying to find information, but I never found this site until this year and so remained largely in the dark--all I knew was that I had minimal blood flow to my brain. I will be honest, I never realized how very serious this was until I read some of the postings on here. Education and learning is my life, but this was actually the one time in my life that I decided I preferred the motto "ignorance is bliss." But I was fortunate enough to find this site right as I was preparing to go in for STA-MCA bypass surgery--I have to admit I learned so much more about what was going on once I read D.J.'s story and some of the postings. I thank everyone for their stories. I had my first surgery on April 9 '07 and just had my second one on May 14 and am so grateful to report that I'm doing wonderfully, as I see many of you are as well! I just wanted to say hello to what appears to me to be a great many fellow moyamoya folk! My best to each and every one of you!
Lisa Brown <>
albuquerque, nm USA
Tuesday, May 29, 2007 at 23:03:13 (EDT)

I just heard of moya moya on Discovery Health Channel. I had a massive stroke when I was 14. All the arteries in the base of my brain were clogged. The doctors said they have never seen anything like this. And I was in the hospital for 3 months and they never figured out what happened to me. Now I know... The great thing is I never had to have a surgery. I must have had this since birth, I have always had terrible migrains that I would pass out from and also my arteries had regenerated themselves. My regenerated arteries bypassed the clogged arteries. I now have 2 sets of arteries and some of the top of the brain stem regenerated also, so 2 of those. Right after my stroke, I had to learn my name, age, how to walk and talk, I couldn't say 3 letter words... like cup (I hate that word to this day, LOL). But on the BRIGHTEST side, the only long term effects I have is epilepsy, slightly poor eye/hand cordination and a little memory loss. I can pretty much live a normal life... except for I can't drive because of epilepsy. Until today I thought I was a "Freak of Nature" and I was the only person to have to deal with this issue. I am glad to have found this website. I want to tell you, it has been 12 years and I encourage you to believe this can be a positive ending... and after all the fear and long progress of recovery, it will make the person and the family going through this stronger. Always think of the glass half full... Brandi
Brandi Wilson <>
Fort Riley, KS USA
Tuesday, May 29, 2007 at 02:38:27 (EDT)

My son Kyler was diagnosed with moyamoya on Dec.7 2005 he had his surgery on Dec.9 2005 at rainbow babies and childrens hospital. His surgery was only on the left side and he is 1yr.6 months past surgery and doing very well. At the age of 4 yrs. old he is as active as any other 4 yr. old and can tell you more about his moyamoya than some medical people. his problems began in 2004 with his moving eyes moving back and forth from side to side. Thanks to his determined pediatrition and the knowledge of rainbow babies and childrens hospital our diagnosis was quick.
sherry t <>
north ridgeville, oh USA
Saturday, May 26, 2007 at 21:49:59 (EDT)

My sister was diagnosed with Moya Moya in 1986 after having two strokes at the age of six. She was the first person in the Uk to have her type of operation(i cant recall which one of the top of my head, but she has two huge scars on each side of her head!) so shes kind of special! She has epilepsy as a result of the surgery and is mentally disabled with a weakness down her left side a s a result of MoyaMoya. It took a while to diagnose her back then and its only Thanks to a Doctor who had heard of this rare illness that she is here to tell the tale today. Kind wishes to all other sufferers and families out there, its nice to know we arent alone. :o)
Lisa Whitby <>
Leicester, UK
Saturday, May 19, 2007 at 17:54:30 (EDT)

Please add me on your email.Ihave the same disease. Thank you
Patty Cole <>
Nashville, Tn USA
Saturday, May 19, 2007 at 12:40:31 (EDT)

I was been diagnosed with Moyamoya disease in 2004 after I was found catitonic in my bathroom holding on to the sink right before I had to drive to school for my last fall of 2004 final exam at Rutgers University- New Brunswick, NJ. I sit here now 3 years later back working and enjoying my family. I just want to talk to someone else that had this disease. Please Email me if you want to talk sometime!
Cynthia L. Keefe <>
Waretown, NJ USA
Friday, May 18, 2007 at 15:23:53 (EDT)

My 6 month old granddaughter has had 3 strokes and numerous seizures in the last three months. Her name is Carleigh. The Doctors were baffled. And after the third stroke they stated that they felt, after , consulting with different Doctors and the US and Canada that she had Moyamoya.Her right coroted artery is completely shut off and the left is acutely closed. Well, after she has been stuck and poked, for what seems hundreds of times, she had brain surgery today. ( May 17, 2007). And thank you Lord, she made it through the surgery. The surgeon came out told us that it is now in God's hands. I can't express just how happy I am that God is in control! we know that God has a plan and Carleigh is in his hands and will. if you will let me know of you or your loved ones that are in need of prayer I will add them to my prayer list and I will also add their name(s) to our church prayer list where they will be prayer for 24 hrs. a day. God bless you all Chris
Chris <>
Thursday, May 17, 2007 at 20:16:39 (EDT)

on april 23 rd i went to my doc to tell him i couldn't see things out to my left side my vision wasn't right and my speech wasn't comeing out right eaither he asked me to go in for a mri so i did the next day he called and said i better ceck into the hospital asap,i told him i had to make some calls to have someone to care for my kids till we find what was going on with me,i was told that i had a mini stroke sometime i like freaked out i was in ahospital only 25 miles from my house the next day they wanted me transported to a nother hospital like 100 more miles away from my kids for more test well before they transpoted me to the other hospital they did a spinal tap damm that hurt so at this other hospital they had me go throught more mri's and a mriacat scans ultra sounds and a anaalogram sorry for the spelling. but after 6 days with not knowing whats up other than knowen that i had a stroke i didnt know anything i was so scared and not seeing my kids i wanted to leave with out knowen whats wronge then the next morning i had like 7 doc's all come in my room at once i freaked i thought the world was going to end right there and then i was told there was no cure and that i needed surgery now i said noway in hell after they left i wanted to die before they cut me open,i had this nice preg resident doc come to my room and talk to me how this works i listened to her and after talking to her i said ok i'll stay another day and then the main doc came in and talked to me he said we try platicx fist if that doesnt help in 4-6 months i will need the surgery then i hope not nut i will if i have too.i pray to god no-body has to get this ever god bless us all steve q.
steven quackenbush <>
sparta, wis USA
Wednesday, May 16, 2007 at 22:28:24 (EDT)

I have hade moya moya for ten years now both the right and left side of my brain is infected i have also whent through four major brain surguryes and i take four pills becuase of this disorder life for me is hell espesally with the effects of the deases.
charles j.russell
winters, Ca USA
Wednesday, May 16, 2007 at 16:00:08 (EDT)

My daughter had two surgeries with Dr. Scott at Children's in Boston. She is now a 3rd degree Jr. Black Belt and also a soccer player as well. Once you get the surgeries you will be good as new. Thank GOD that they found this early. I also have an interesting story about this too. Enjoy and good luck.
Douglas Veronesi
Wednesday, May 09, 2007 at 14:28:23 (EDT)

I was diognosed with moyamoya in april 2005 I was at my grandma's funeral when I had a terrible headache I went to the emergency room and was later life flighted to K.C. where I was in a coma for nine days when I awoke I was told I had an anurysum and I was also told I had moyamoya I was in the hospital for one month. On my sixth month checkup I was told my moyamoya was gone but I had another anurysum form they had to go in and do bypass surgery to remove it six months later I had another checkup where I was told my moyamoya had come back that was last september I havn't seen the doctor since they put me on asprin and I was told I didn't need tocome back for a year we have no insurance and my doctor doesn't accept medicaid sometimes I wonder If they don't want to see me because of that reason.
melisa wunderly <>
fulton, ks USA
Wednesday, May 09, 2007 at 13:22:20 (EDT)

well im a 16 year old softball/ varsity soccer player. i found out i had moya moya in march n im getting surgery may 14, 2007. when i fist heard i had a stroke i wuz shocked because of my age. i thought it only happened to people in the 50's but after i found out what i had. i been waitin for surgery so i can go back into playing sports.
cassie <>
sierra vista , az USA
Sunday, May 06, 2007 at 15:56:56 (EDT)

I have known I have MoyaMoya Disease since November 2002. In October 2002 I collapsed at my local medical center having gotten myself there complaining that I felt as though I had been hit over the back of the head. I was given something for the pain but never made it out of the building. At the time my husband and I lived in a small rural town in the North Island of New Zealand.I had to be rescue Helicoptered to the nearest Main center where Several CAT Scans were done comfirming I had suffered a Brain Haemorrohage and needed to be transfered to Wellington where a team of Neurosurgeons were on stand by to operate to stop the bleed. More CAT Scans were taken which showed the bleed had stopped by itself, surgery was not required. I am told, it then became a waiting game whereby I was left on life support untill the decision was made to slowly turn the support off and see what happened. Able to function I was gradually taken off life support. An Angiogram was then performed which showed MoyaMoya vessels....and the diagnosis was made. I spent 12 days in Wellington then back to Palmerston North for a further 6 weeks in Rehab before I was allowed to leave Hospital. 6 of the 8 weeks I spent in Hospital I cannot remember a thing about.People tell me it was like the movie Ground Hog day I kept asking the same ?'s over and over.My frontal lobe had been fairly traumatised resulting in very poor short term memory...the old stuff was in there such as knowing people and events (even phone nos) from before October 11 2002 but from then on no idea...I was in a place that we now refer to as LahLah land (which upon reflection was a pretty safe place to be because I am told it was all pretty scary) Before arriving back at Palmerston North Hospital nobody had heard of MoyaMoya let alone ever had any involvment with the care of somebody with MoyaMoya!! New Zealand has a small population of only 4 million people. My family were told in Wellington there was one other survivor in NZ with MoyaMoya!! So finding out I have a disease that affects 1 in 3 Million made me feel very lonely to say the least. My Husband is a police officer so we not only had the public health system doing it's bit to help but we were able to access support from Police Welfare. I remember sitting talking to one of the Police Psychologists and she asked how far down the recovery track did I think I was and to both her and my husbands horror I replied about 20%. The thing was I have no recollection of 6 weeks at all,I guess in my case I may not have been able to deal with it living in the moment so "LahLah land" it was untill I could cope with the enormity of events. I am a tough character who was in the process of joining the Police force at the time of these events hence I was the fittest I had ever been at the time! I continued as an outpatient for months seemingly making a great recovery untill things crashed around my husband and I. Shortly before getting clearance to drive again my visual fields were tested and I failled Having lost my upper left hand field of vision. Our world crashed around us...The trouble with a brain injury is that it is invisible, and people around you are not mind readers, they have no idea what is going on for you...untill you start to share and tell them . I was stuck with what I learned to call a "5.5 to 6" headache all the time, I was swallowing 8 Painkillers a day,I marked the sheet of pain killers at 6 hourly times.I felt knackered all the time. I went through the emotion wheel again and again untill one appt with one of the Police Psychologists I said it's too hard with this F****g headache. I had grown up with Migraines and they had never beaten me, this was far worse! I had to find help for the pain I had been left with...I was desperate...then I talked my husband into taking me to a public forum on pain at the Hospital. I found a Psychologist who was able to help me. Through some "Alternative" treatments such as using Freezeframer, Meditating to Holosync and the breakthrough I had an EEG or brain map done that showed a highly distressed part of my brain that was locked on full speed all the time, no wonder I was knackered all the time. Through Neurofeedback training we have been able to retrain this part of my brain and I no longer have the pain. Life is never going to be the same but in many ways it is better, it is now about quality, I could not have got to where I am now without the love and support my incredible husband. Prior to this if anyone had asked me to stop and smell the roses I would have said "What Roses?" without even noticing the roses, let alone smelling them. I have had many follow up appointments in Wellington with the Neurosurgeons and am told there is no need for surgery. I have had another angiogram all appears fine,I simply live life accordingly knowing the limitations of my condition. Any other Antipodeans with MoyaMoya out there? Trudy Lawton, Feilding, New Zealand
Trudy Lawton <>
New Zealand
Friday, May 04, 2007 at 06:42:24 (EDT)

On 26 April 2007, we learned that our son Jason has moyamoya. Had it not been for me finding my birth sister Sara, I would never have learned that this disease seems to be running through the male children of our family. Thus, I may never have pushed to have my son tested. For years we have lived with a diagnosis of Epilepsy & Obstructive Sleep Apnea. We have now been told by a different Neurologist that he doesn't have Epilepsy & most likely never did. We are now awaiting Tri Care to give us an ok for the flight to California to see Dr. Steinberg. He is who did both surgeries on my nephew. Although I saw what my sister went through with my nephew & this disease, I'm very worried about my son. I'm upset because this could've been caught back in 2001 at his last MRI. Now it's 6 years later & he's in serious condition. I can't seem to sleep these days. Any help or ....hell, just someone to talk to about this would be great. I'm very greatful to my sister & best friend. She's my rock right now.
Josephine Willis <>
Leesville, LA USA
Saturday, April 28, 2007 at 19:16:05 (EDT)

Hi just an update my son was diagnosed in march he is due to have surgery on 15 may fingers and toes all crossed. Just had a xenon ct scan, he was under for 3 hours with it havent got results yet prob see them befor op, Has anyone else with down syndrome been diagnosed with moyamoya docs say it may be connected. Thanks xx
Nicola <>
newcastle upon tyne, uk
Friday, April 27, 2007 at 08:37:04 (EDT)

In memory of Cheyenne Burks 8/13/04 - 3/18/06. My sweet baby girl Cheyenne went to be with the Lord on March 18th from an agressive progression of MoyaMoya. She fought for 15 months after her first stroke in Feb of 06. Psalms 121:1-2 "I will lift up mine eyes unto the hills, from whence cometh my help. My help cometh from the LORD, which made heaven and earth." We miss her greatly.
Theresa <>
Houston, TX USA
Tuesday, April 24, 2007 at 17:52:07 (EDT)

My 5-year old son, Rhylley, was diagnosed with moyamoya about a year ago. He presented with headaches (99% of them were first thing in the morning) that always resulted in him vomiting. After seeing numerous specialists, a CAT scan and finally a MRI, he was diagnosed by Children's here in DC with the disease. His doctor, however, did say that the vasculitis has not caused strokes that they can see, as of yet....And the decision to have surgery was left to my husband and I--which we decided not to. Rhylley is on aspirin to thin the blood....My question to anyone out there is what can we expect next? What time line, if any, should we be looking for?
Lynette <>
Hagerstown, MD USA
Tuesday, April 24, 2007 at 13:17:12 (EDT)

Hi, I am 34 and tomorrow i will finally get confirmation whether i have MM or not but just wanted to say a huge thanks for all the information i have gotten from this website. I had a stroke 8 years ago and they think i have had it that long but I am on plavix at the moment so fingers crossed! My heart goes out to everyone as now i have some understanding of the pain and fear that you all must be going through, i just hope you all have the support of your friends and family that i have had.
Nina McCormack <>
London, UK
Monday, April 23, 2007 at 19:02:34 (EDT)

I was diagnosed with Moya-Moya in April of 2003. October 23,07 I had my first surgery on the left side. And if not for this room and from a person that contacted me in here and told me of a Dr. that I went to I feel like I may not be here today. So God Bless all of you in here. And especially Dr. Mericle that performed my surgery here in Nashville. He truly is a "Mericle". I have never heard of him until someone from this room contacted me and told me about him and my life changed forever. I am starting to show signs on the right side now of a blockage of 50-70% but with the Good Lord and Dr. Mericle behind me I know all things are possible. And I pray for all of with this terrible disease. God Bless you all.
Tresa Overstreet
Nashville, Tn USA
Monday, April 23, 2007 at 13:51:41 (EDT)

Hello all. I was diagnosed on Thursday (April 19, 2007) at UCLA with Moya Moya. I am awaiting approval from my insurance to have further MRIs and tests and a follow up with Dr Neil Martin at UCLA to determine if I need the surgery. I had a small TIA in March and after 5 days in Mission Hospital, an MRI/MRA, a TEE, a four vessel angio, my doctors discharged me. They were stumped. I saw a cardiologist - ruling out any heart related conditions, a rheumatologist - ruling out lupus or any other auto immune diseases, and a follow up with my neuro - who referred me to UCLA. So after a month and a half of seeing doctors with no answers, I got my answer. Even though it isn't the optimal answer, I am relieved. I would love to chat with anyone local to So Cal (Orange County) to compare experiences and such. I am hopeful I can continue to lead a normal life with this rare condition. I like to think I am special because I have it and look forward to educating my friends and family about it. Cheers! Sandi Ressel
Sandi Ressel <>
Mission Viejo, CA USA
Saturday, April 21, 2007 at 16:16:04 (EDT)

Our 11 month old son, Cash, was diagnosed when he was 7 month old. He had surgery in Jan. and it was bilateral. We have since been coresponding with another family, Tyler, and it is a lifesaver to talk to them. We answer each other's questions and it helped us get through a difficult time. Our son is doing great and we are seeing his neurologist next week for his follow up MRI/MRA. We are scard but excited. Unfortuneatley, Tyler has had a more difficult time and we pray every day for him. Find someone and correspond with them. It helps greatly.
Abbe Harpp <>
Merrillville, IN USA
Friday, April 20, 2007 at 22:21:46 (EDT)

i am a 39 year old male with MoyaMoya and the amazing thing is that my sister who was 40,unfortunately deceased had the same disease. i had my first stroke when i was 15, they did not know what i had until my last severe stroke at the age of 25. i have had the bypass surgery with little blood flow increase.i have complete occlusion of the left coroatid artery and 40% in the right. Docs say that blood is finding a way around, since surgery would be to dangerous. we would like to know if there are any other sibling related cases? also would like to know if others have blocked coroatid arteries? I have TIA (mini strokes quite often and numbness and headaches every day). also shooting pains in the top of my head. My surgery was preformed by Dr. Yea of Mayo clinic, in Cincinnati, Ohio and was done at University of Cincinnati. I have some information on the disease, if you have any questions contact me.
rob campbell <>
oxford, oh USA
Tuesday, April 17, 2007 at 21:38:15 (EDT)

I just found out about an hour ago that my 16 year old brother has been diagnosed with Moya-Moya and I was just looking around to find information abour it. I'm glad I'm not the only person in the world who's going through this.
Tahnea Higgins <>
St.Paul, MN USA
Saturday, April 14, 2007 at 19:45:21 (EDT)

I have been just diagnosed with moyamoya on April 3, 2007. I have had a celebral angio. I am 41 years old with a husband and children. I have been told that the Neurologist in NJ would be treating me for migraines and the neurologist in University of Penn will be treating me for the moyamoya. But they Univ. of Penn would like to see by doing a xenon scan if I am a candidate for brain bypass surgery. I do not want to be an experience. what my chances are for healing me with this disease. Please help me if you can. thanks
Richelle Pierson <>
Burlington, NJ USA
Thursday, April 12, 2007 at 23:01:05 (EDT)

HI i was born with moya moya disease.I also have been dealing with syptoms for a very long time but, my symptoms are progressivly getting worse and I feel like i am losing my mind right now because my disease is getting so bad that i don't even want to get out of bed at times
katherine costantini <>
weirton, wv USA
Tuesday, April 10, 2007 at 21:10:24 (EDT)

My daughter, Jessi Fox, was diagnosed with Moyamoya in March. She is 23 and had been having trouble with her left hand doing what her brain was telling it to do at work. She is an Registered Nurse and the episode happened at work in the hospital she works at. Presently, she has had two angiograms, MRI, CT Scan, and will meet with two specialists on April 18. She will then be searching for a good surgeon to do the surgery. If anyone can help with a good surgeon, I would appreciate the information. She has been told about Steinberg at Stanford and may go there for a second opinion. Since this first episode, she has had others, usually affecting her left hand. We are hoping to find some information on costs, etc. We know it will be through the roof, but wondering if there is any help available. Concerned Mom
Maryann Fox <>
Long Beach, WA USA
Tuesday, April 10, 2007 at 20:53:34 (EDT)

I was diagnosed with a unilateral MMD (right) on 10/18/06 and had STA-MCA surgery done on (3/22/07) at Barrow(BNI) in Phoenix by Dr. Spetzler. I just want to share some of my experience and learn from others' experiences.
Aromsack Sonethongkham <>
Tucson, AZ USA
Tuesday, April 10, 2007 at 02:02:13 (EDT)

hi my name is tammy .i was diagnosed with moyamoya on nov 17, 2006. i had my first surgery on nov 21 ,2006 and the second one on dec 4 ,2006. the dr. said that i would need at least two more surgeries. i dont know when . i go back to the dr.s in may for more tests. does anyone from washington st have moyamoya besides me?
tammy martinez <>
wenatchee, wa USA
Sunday, April 08, 2007 at 23:47:32 (EDT)

I have known that I have moyamoya for 7 years, fortunately up to this point in time my collateral flow has been sufficient enough to get me through just fine. Recently I had a fuctional mri and a nova study done at the University of Ill in Chicago and it has shown reduced blood flow. I just got home last night from a overnight stay in the hospital after an angio. I will find out on Tue. what the panel of doctors thinks will be the best solution from this point on. I would like to know if anyone has had the bypass done at uic, and if you have ever heard of or had dealings with a neurosurgeon by the name of Sharbel. I don't know yet if it is going to come down to surgery but I want to fine out as much as I can now. Thanx, Sherry
Sherry Richoz <>
Baroda, mi USA
Saturday, April 07, 2007 at 20:43:30 (EDT)

In answer to Carol's question about the progression of the disease and if she can expect more serious symptoms - I saw four doctors, and although they did not necessarily agree on the correct course of treatment, the one thing they could agree on was that I would eventually have a stroke. They could not predict when, or how severe the stroke would be. The main question which presented itself is did I want to take a reactive approach, or a proactive approach. I chose a proactive approach, having bilateral revascularization surgery on March 21st and 28th. It was a grueling three weeks of perop testing and surgery, but, having it behind me now, I am so glad I did what I feel will give me the best chance for living a normal life. You owe it to yourself to research all the options and choose what you feel is best for your situation. Dr. Steinberg at Stanford has information free for the asking and he and his team are very knowledgeable and responsive.
Kimberly Sanberg <>
Aliso Viejo, CA USA
Saturday, April 07, 2007 at 13:33:44 (EDT)

My sister, Kim, had two surgeries for moyamoya at Stanford with Dr. Steinburg on March 21 and 28. Both were successful, and we are thankful to the Lord for that. While we were there, we met Greg and Jean. Greg had his surgery about the same time as Kim. I've been thinking about them and hoping they are doing ok. If they see this, I hope they will contact me.
Melanie Nelson <>
Fallbrook, CA USA
Thursday, April 05, 2007 at 17:58:53 (EDT)

My 8yr old son was just diagnosed with MM on March 22,2007. Does anyone have information on what facilities to the surgery so that I may do further research based on the most successful outcomes.
Daisy Cordova <>
Antonito, CO USA
Monday, April 02, 2007 at 13:05:58 (EDT)

hi i have Moya-moya too im going thru my worst live right now my husband and me split up we been married for almost 14 Years we have 2 beutyfull daughters who been thru the same ? please e -mail me thanks Angie
Angela <>
savannah, GA USA
Thursday, March 29, 2007 at 08:38:02 (EDT)

I have just been told that I have Moya Moya, they first said I CNS Vasculitis and finally they have decided Moya Moya. I am looking for Dr's in the Kansas City Missouri area that my be somewhat familiary with this disease?
Dea Elaine Kuether <>
Sugar Creek, MO USA
Monday, March 26, 2007 at 21:50:33 (EDT)

I was reading my previous post and realized my email address was incorrect. I am now a registered member of this site and would appreciate any feedback you all may have. Thanks,
Carol <>
Rockledge, FL USA
Sunday, March 25, 2007 at 08:24:43 (EDT)

I have recently (last Monday) been diagnosed with Moyamoya disease. I am asymptomatic except for migraines, and the preliminary diagnosis is based on an MRI/MRA. MRI was normal but the MRA showed blockage of the left carotid artery. I'm female, 45 and half Japanese. The neurosurgeon said since I have no other symptoms (no hemorrhaging or mini strokes) and that my brain developed collateral vascular flow that's compensated for the existing blockage, he indicated that no treatment was required. My question is, how progressive is this disease? Is it possible that I will be so lucky as to have no further problems?
Carol Laymance <>
Rockledge, Fl USA
Saturday, March 24, 2007 at 07:39:03 (EDT)

...Forgot to say, or maybe I did. She is one of FEW cases where the patients does not have ANY symptoms before they are "dead" or "gone". She had them ALL in one package; she had all her mini-strokes on the 17th of Dec, at the age of 15 (19march would be 16). And I can be angry, as much as I want, but it will never bring her back to me, in my arms, as the day she looked at me and could not move her legs... I pray to "what's out there" that one day, all our specialist doctors, will find the reason for WHY and WHAT.. I miss you so much!
Caroline, Henriette (15)'s sister (20) <>
Oslo, Norway, Norway
Wednesday, March 21, 2007 at 17:24:57 (EDT)

Hi My younger sister, 15 years, died of Moya-Moya Dec 22, 2006. Her first, and only symptoms came Dec 17, 2006 and she died 5 days later. She had all her symptoms/paralyzation Sunday Dec 17. I was with her, my father is an intensive-care-doctor and head of department, and saw her reaction at once, and we took her to the hospital. I miss her very much. only 1 other person had something similar in norway, about 4-5 in the nordic countries. its crazy. am devastated...
Caroline <>
Oslo, Norway, Norway
Wednesday, March 21, 2007 at 17:20:21 (EDT)

I've had 3 crainium surgerys,they didn't go so well!
Linee Jane <>
Potsdam, NY USA
Sunday, March 18, 2007 at 18:46:14 (EDT)

Hello ! I have Moya moya myself. Trying my best 2 let people know what it is...and never give up on life!! I have 2 go surgery again on my haed on march 23/07o
Sunshine <>
Halifax, N.S CANADA
Saturday, March 17, 2007 at 16:13:00 (EDT)

I have just heard about this disease for the first time this week. My mom, who lives in Michigan, was diagnosed with MoyaMoya. Her doctors were not sure what it was. They ended up having to call up a speacialist from Henry Ford Hospital. They are not sure how long she has had it. Five/six years ago she had two mini strokes. Since June of 2006 until now she has had four minor strokes and two massive strokes. Right now she is in the hospital at Hurly Medical Center in Flint, Michigan. At this time she can't move the lower portion of her body. She can move her arms but has trouble feeding her self. Her speech is affeced some. She is confined to the bed in the neurological trauma unit ICU. I would like to know (understand) what her chances are. Is there anything that I could do for her?
Jeanette <>
vicksburg, ms USA
Saturday, March 17, 2007 at 10:34:39 (EDT)

My four year old neice was just diagnosed with this disease on Monday. She is currently in the hospital. Her speech is slurred. I still don't know alot about this disease. The doctors told my sister that my neice's blood vessels were opening up on their own. Because of this they don't want to interfere with "mother nature". They will probably perform surgery sometime in May. They are scheduled to do an MRI today. Please e-mail if you or someone you know is going through treatment or has recently been diagnosed. I'm praying for my neice and all that are suffering with this disease.
Angel <>
Elm City, NC USA
Thursday, March 15, 2007 at 14:58:05 (EDT)

My daughter Ma'Keilah has recently been diagnosed with Moyamoya disease only because she suffered a stroke. At birth she was diagnosed with Agenesis of the corpus callosum but after her stroke I was told this diagnosis was not right. During her 4 1/2 years she has suffered from seizures which were causing small strokes this news is just coming inot play for us but I am at a loss as to where to take her to make sure that the diagnosis is correct before I talk about anyone operating on her. If anyone could provide me with some assistance as to where I could get help this information would be greatly appreciated.
Michele <>
Blythe, GA USA
Thursday, March 15, 2007 at 10:13:01 (EDT)

I recently viewed a program on moyamoya diease and my interest was peaked. I began to do research on the disease in order to understand it more clearly. I am a high school senior and in order to graduate I am required to do a research paper on the subject of my choice. I would really like to do my paper on moyamoya disease. One of the requirements of the research paper is an interview. I would greatly appriciate it if someone would be willing to talk to me about how moyamoya disease has impacted your life. If you or someone you know would be interested in this then you can contact me at Thank you. -Caitlin
Caitlin <>
Thursday, March 15, 2007 at 09:45:33 (EDT)

My daughter Cheyenne was diagnosed with MM on Feb14th 06 after having a stroke which left her with right side hemiperisis. She had Dura Inversion performed by Dr Robert Dauser on Feb 22nd. She was walking again within 6wks after surgery. She had another stroke July 29th and her second surgery Aug 3rd. Dr. Dauser has provided the utmost of quality care. Cheyenne is a strong girl and is doing fine.
Theresa Burks <>
Houston, TX USA
Sunday, March 11, 2007 at 12:42:40 (EDT)

Hi, i have twin daughters and 1 of them have been diagnosed with moyamoya. we found out that she has beeb having mini strokes she is only 8 yo. does anyone knnow whats the chances of her twin having this also. I am so scared right now im not sure what to do. evreything i have read on this mm has been sooo scary to me then when i foung this site it seems so much more hopeful. please if anyone knows anything please let me know. id love to hear from anyone whose had this mm or has already gone thorugh surgery she has to have 3 and we just went through one and she is still icu and has been in since wed.... sincerely, tanya
Tanya Holcomb <>
carnesville, ga USA
Saturday, March 10, 2007 at 22:14:07 (EST)

i know it's scary when u first get diagnosed with MM, what to expect, what to do, which surgery to get...this site helps lots of people understand the disease better and even connect with people in there home state. i've meet a couple great people and even out of my state for awesome support. but you must look to the Lord, He's your strength and strong tower. I've been very blessed with being diagnosed and is able to take care and have surgery. i say blessed because many people look at their situation as BAD, but I considered it as God making my unique :) and many people can learn about MM. So be humble and submit yourself to the All Mighty!!
Brandie <>
Pearl City, HI USA
Wednesday, March 07, 2007 at 17:40:02 (EST)

My son had a mild stroke last week and has suspected moyamoya he is 5 and has downs syndrome his granda has commeted below. This website has been fantastic the video really helped and sam may be having the surgery mentioned in the video. Glad to hear all positives.
nicola <>
newcastle upon tyne, uk
Wednesday, March 07, 2007 at 11:31:41 (EST)

Hi my name is Patricia Ann and just was told this morning that I have moyamoya disease and need to be operated on within the month.I was shocked leave it to me to find some exotic disease! I'm scared and in shock not sure of what to expect. So it was nice to hear that i'm not alone.
Patricia Ann Lush <>
Cambridge, ont Canada
Friday, March 02, 2007 at 13:46:50 (EST)

Hi everyone,my 5 yeard old grandson, Sam, who has Downs Syndrome has had an MRI scan after suffering a 'mild' stroke and has been diagnosed as possibly having Moyamoya. I have not heard of this before yesterday and am glad to have found this site to give me a better understanding of what the future may hold for him
Patrick Docherty <>
Newcastle upon Tyne,England, UK
Friday, March 02, 2007 at 04:28:01 (EST)

Hi I have moya-moya disease better known as maui maui, kinda of wish I was in Maui at the time I had found out I had it. I had it for a very long time before acutually finding out that I had it. I had both of surgeries performed at Columbia presbyterian in New York City by Dr. Sander Connely. i'm feeling ok now although I do not have full felling on my let side and it probably will never come back. I often still get head aches. I suffer from minor seizures from time to time and am treated w/ meadication for those. MY SPIRITS ARE UP BECAUSE I AM HEAR TO "CHAT" w/ YOU ABOUT IT!!! : ) Life is too short to be miserable and to dwell, and I think we all know, but after finding out about this website, I am glad to know that I can chat w/ all of you about it.
Brianne Haggerty <>
Staten Island, NY USA
Wednesday, February 28, 2007 at 10:19:26 (EST)

hi my son was dieanoticeed with moya moya he is 6 years old i dont know what to do i need some help he has surgery in march 2007
anna hage
okmulgee, okla USA
Sunday, February 25, 2007 at 14:31:39 (EST)

My cousin had a stroke 2 weeks ago and they have said she has moyamoya syndrome. She cannot talk or move the right side of her body. How can i help her?
Shannon Bradford <>
Phoenix, AZ USA
Friday, February 23, 2007 at 18:08:51 (EST)

I was diagnosed with Moya-Moya in 1994 at the age of 42 after I had a stroke which left me with left sided weakness and now in a wheelchair. I underwent a carotid bypass on my right front carotid since the other three were too occluded for anything to be done. At the time of my bypass I was told I "might" live six months,so don't believe it if you are told the same or worse. Doctors may mean well but they don't have all the answers.
Gary Preston <>
Jacksonville, Fl. USA
Friday, February 16, 2007 at 10:48:25 (EST)

My son Tyler is 4 1/2 months old he is getting surgery in Boston Feb 20. Please keep him in your thoughts and prayers.
Amanda Sincavage <>
Auburn, PA USA
Thursday, February 15, 2007 at 13:18:20 (EST)

my friend has to have the surgery she wanted me to check this site out
Deanna Morrison <>
wichita, ks USA
Wednesday, February 14, 2007 at 19:43:00 (EST)

Folks I´m from Brazil and almost 2 years later I can see and/or read something about this desease. Until that I was I little afraid to talk about it First of all, sorry for my poor english. I will try to transmite good energy for everybody that have this problem too or that recently discover it. My God! It´s horrible but fortunatelly, we have good doctors in the world that can help us. Now my soon is 8 years old and we discover that he had this disease when he was 6. I know exactly what everybody here feeling, because my soon pass for the same symptoms. Everything is gona be all right!!! Believe on it
Rose Kitamura Takada <>
Sao Paulo, Brazil
Tuesday, February 13, 2007 at 12:58:14 (EST)

I just met my first patient with a diagnosis of Moyamoya. I'd never heard of it. Thank you for the insights into living with moyamoya.
Michael Johnson <>
Lima, OH USA
Monday, February 12, 2007 at 11:26:24 (EST)

I nere thought that I would be blessed with moya-moya. I'm just made 36 ,my life will never be the same again when I found that I have moya-moya and I had a massive stroke.
Sharmaene Yeaman <>
Hilo , Hi USA
Saturday, February 10, 2007 at 21:53:00 (EST)

Hi, I am trying to find a doctor that does the surgery. I need to get it done as soon as possible. I also want to know, I am having pains in the top of my heard. I have to go to the doctor on monday but I wanted to know is that a problem?
elizabeth, nj USA
Saturday, February 10, 2007 at 20:05:13 (EST)

Just yesterday, February 7, 2007, a relative was diagnosed with Moyamoya Syndrome. Her situation is a bit more complicated than some of the stories I've encountered on this website. She has bleeding in the middle of her brain and surgery is not an option at this time. Unfortunately, there is only a 30-40% of chance that she will make it thru this diagnosis. In addition to all of that, she is unconscious. As you can imagine, this is a very difficult time for all involved. There are five children, numerous grandkids, and many relatives praying and hoping this horror story will have a positive ending. Please assist our family and pray for a solution to this medical dilemma. Thank you so much for everyone who has taken the time to read this entry. May God be with you today and always!
Lamanda Hinks <>
Orlando, FL USA
Thursday, February 08, 2007 at 10:16:46 (EST)

My name is Simone Cooper I am 27 years old and I have moya moya disease. I have had it for a year and a half. My doctor wants me to get the surgery but I am scared. I am looking for information on moya moya disease before I get the surgery.
Wednesday, February 07, 2007 at 11:36:20 (EST)

My mother in law was diagnosed in 1976 with Moya Moya - just 5 years ago she finally had surgery and it did in fact extend her life, unfortunately so much damage had been done through tht eyears to her frontal lobe, we pray for everyone out there to find peace and happiness.
Pamela <>
Aston, pa USA
Thursday, February 01, 2007 at 14:33:52 (EST)

A friend of mines, neice was just diagnosed with this rare disorder. Never heard of it before. WOW!
Amy <>
Benton, ME USA
Wednesday, January 31, 2007 at 10:52:16 (EST)

Hello I am Emilio Morrone. I was 8 when I was diagnosed with this disorder. I am now 17 and I would have to say thank you to my doctor Dr. Frim. He saved my life. It is hard growing up with the disorder especially the lack of being able to participate in certain athletic functions at school when I was younger. My parents always protecting me from the worst limited my physical activity, which sort of made me resent them in a way, but it was for the best. One suggestion to parents whose children have been diagnosed with the disorder is protect your children but don't go to far. For example football bad Idea baseball good idea... when wearing a good helmet. Parents it is important that you have you invest in a good helmet that your child feels comfortable in I got stuck with a hockey helmet in gym class which wasn't to fun. Keep an eye on your child to make sure they are wearing their helmet during physical activity Especially when they are riding their bike. Riding your bike is probably the biggest risk since it is the most common. I know that when I used to get out of my parents line of sight I used to take it off because it wasn't "Cool." Thank god nothing ever happened.
Emilio Morrone <>
Lemont, IL USA
Monday, January 29, 2007 at 22:40:30 (EST)

Hi, my aunt also has Moyamoya. She had a stroke last October and has been in coma since then. Nobody knows when she is going to wake up. Anybody here who had such experience and finally woke up? We are praying for her everyday. BTW, she is 48 and living in China. I am here in the United States and found this wonderful website where I learned so much information about Moyamoya.
Monday, January 29, 2007 at 22:30:51 (EST)

Our 8 month old son Cash just had successful bilateral revascularization on Jan. 22nd. at the University of Chicago with Dr. Frim. We are finally home. Cash needed little to no pain medication post-op and he had minimal swelling. He is getting back into his routine. His function lost from his stroke is slowly coming back and according to our doctors will come back. We are definitely blessed to have such caring dedicated people at the University of Chicago Comer's Children's Hospital. Everyone that took care of us were awesome. Cash is on the road to recovery and hopefully putting this experience behind him and conquer moyamoya. Good luck to everyone. The Harpp Family
Jeffrey Harpp <>
Merrillville, IN USA
Sunday, January 28, 2007 at 18:31:56 (EST)

Hello is there anyone out of Germany? I have moya moyo sins 1997. Iám 42 an i want contac to other people, they have the same. Sorry but my english is not so good. greetings from Aachen
Uschi Stiller <>
Aachen, Moya Moya Germany
Sunday, January 28, 2007 at 18:30:53 (EST)

I learned today that my insurance company has diverted me to UCI rather than Stanford...I'm crushed! Instead of Dr. Steinberg, they want me to see Dr. Chiedozie Nwagwu. I can't find any information about him anywhere but the UCI web site. Has anyone heard of this guy? He used to be in New York. Please email me if you have any information on him!! :-)
Kimberly Sanberg <>
Aliso Viejo, CA USA
Friday, January 26, 2007 at 22:08:22 (EST)

Hello - my last posting was April 6/06. Ella is now 17 months old and is doing remarkably well. Her surgery was Jan 31/06. (Diagnosed NF1 Dec 30/05 and Moya Moya Jan/06) The follow up cerebral angiogram was done in July and - thank God - the surgery was successful. There is a marked improvement in the perfusion to her left side of the brain. Although she is now 17 months old,she is actually hitting milestones for a 7 - 8 month old baby. I am hoping that in time as she grows older she is able to catch up and not be developmentally delayed....We are waiting now for another cerebral angiogram appointment to make sure everything is ok...So far, so good. Ella can sit up unassisted, is commando crawling and has just started to pull herself up to stand. I see so many success stories here that I am optimistic about Ella's future.... i hope she will be a success story too!!! Good luck everyone...god bless.
c. basa <>
port moody, bc canada
Tuesday, January 23, 2007 at 20:10:43 (EST)

Dr. Steinberg and his staff at Stanford have been so fantastic! I am tentatively scheduled for bilateral surgery and feel I will be in the best of hands. I would love to hear from anyone who has already had surgery at Stanford to find out about their experiences there.
Kimberly Sanberg <>
Aliso Viejo, Ca USA
Sunday, January 21, 2007 at 22:47:18 (EST)

I am Kim Sandburgs Aunt and we have known for a while she had some problems but just found out just what it is called. Thank you so for this site. It gives us so much information and answers so many questions. Thank you again.
Shirley Lester <>
Hawthorne, CA USA
Saturday, January 20, 2007 at 18:30:20 (EST)

I am marlene and I have moyamoya since 1995.
marlene smith <>
palmyra, ny USA
Thursday, January 18, 2007 at 14:53:39 (EST)

My daughter 17 years old, African-American with Sickle Cell Disease was diagnosed with Moya Moya. Is there any sickle cell patient that had the surgery done and what were the results. Also please let me know what is the name of the hospital and doctor so I can get in contact with them a.s.a.p. Do you know if Dr. Scott or Steinberg might be specialized to do this type of operation?
Claudette <>
New York, NY USA
Wednesday, January 17, 2007 at 00:05:29 (EST)

The recent special on TV which highlighted a Moyamoya case really grabbed my attention. Much of the story and many symptoms hit right at home for me. I've been struggling with stroke-like episodes over the past 12+ years which have always resulted in finding no known medical cause or definitive diagnosis. I feel like "the boy who cried wolf" after the many trips to the ER and no answers. I'm a male age 55 and am wondering if others may have had similar stories that finally landed on this diagnosis?
Dale Vaughn <>
Aurora, CO USA
Tuesday, January 16, 2007 at 01:50:16 (EST)

Wow! I am sorry I missed the story January 10th on Prime Time...or was it Nightline? Did they do a feature on MoyaMoya? Heather, our 17 year old daughter had the EDAS bypass performed that day at Vanderbilt Childrens Hospital. The surgery lasted eight hours..although it was an excrutiating twelve hour wait for our family, Dr. Mercicle or his nurse gae us an update every hour. I am so pleased and still somewhat stunned to report that Heather came home just two days after her surgery. Apart from a slightly swollen left eye and a five and half inch scar runnning from the front of her left ear up to the top of her wouldn't know she just had major surgery! She is walking, reading, talking and even joking around. I am simply amazed. We were even more amazed when we discovered that Heather now has three titanium bridges in her left temple that replaced the section of skull removed for the bypass. Apart from a sore jaw muscle which was cut for the surgery, Heather really hasn't complained much about pain. If you or a loved one has MoyaMoya or you suspect you have MoyaMoya I strongly encourage you to see Dr. Robert Alan Mericle at Vanderbilt. He is one of the few Neurosurgeons in the United States who specializes in this rare and complex disorder. He and his surigcal team... called the "A Team" have performed bypass surgery on over thirty Moya Moya patients in the last twelve months. Trust me... believe want a Neurosurgeon and equally important an anesthesiologist who has experience with this disorder. Dr. Robertson and Dr. Miller were the anesthesologists for Heather..they had a great sense of humor and made sure Heather knew they would be there for her. Our entire experience at Vanderbilt was exceptional. I am just an email away if you need to talk or would like more information about Dr. Mercicle and Vanderbilt. Please know I will continue to keep you all in my prayers. - A mom who understands
Kim Frick-Welker <>
Cookeville, TN USA
Monday, January 15, 2007 at 22:39:56 (EST)

Hello, I am patricia(28 years old) from the netherlands, I had moya moya when I was three years old. When they found out what I had they made a by pass. And I had some therapy for three years and I was almost normal. So I was lucky I see. Some people have a lot troubles with it. Sometimes I think my memory is not like others, and I am not really good in sports or dancing, but I can live with it easily. I have a normal job and I can drive a car. Last year I had to go to the hospital for something else, and before the surgery they wanted to see my brain is still allright to be under anaeshetic. And from then I was interested in moya moya, cause I never search for it before. So I am glad that I find this page. A lot of information I found here I never knew before. Thanks you!
patricia <>
Saturday, January 13, 2007 at 17:49:36 (EST)

I got some great news yesterday 1-12-2007. When I had taken my daughter, Shelbi, 1-9-07 for her MRI/MRA the doctor found that her MoyaMoya was present on the back of her brain and on the left side now. He said there was nothing that could be done with the back of her brain. So I left not knowing how much longer she had to live or if she would just become permenantly disabled or what. She had an angiogram yesterday and when the results came back, they showed that she had totally normal blood flow on the back and on the left side of her brain and that the blood flow was still excellent from her first surgery. The doctor said that sometime MRI's/MRA's over or under read images and that is what must have happened in this case, but I know that there was a lot of praying going on and I'm positive that God had a hand in this. However the MRI did show that she Sirynx and a Chiari malformation. This means her cerebellum is hanging out of the base of her skull. So we will have to have surgery on that. This and MoyaMoya have many of the same symptoms but I guess they are not related.
Tina <>
Trinity, AL USA
Saturday, January 13, 2007 at 12:48:21 (EST)

I seen the Primetime show on t.v last night and was so glad the word is finally getting out about this diasese.I have lived with it for four years. Wonder every day if I am going to make it to the next.Live one day at a time and am thankfull.
Sharon Garthoff
Thursday, January 11, 2007 at 23:05:16 (EST)

Thanks for all the information. I only found out about this disease last night from Nightline. I have already contacted my doctors to see if I could get the Right test this time. I have been having these symptoms for years with out any diagnosis. Thanks for the information so far. Very helpful. Thank you AShley Titcher SC
Ashley Titcher <>
North Augusta, Sc USA
Thursday, January 11, 2007 at 15:14:45 (EST)

Hello, my mom was diagnosed with Moyamoya in 1985-cuacasian, and in her mid-thirties. She had surgery-bipassed her saphenous vein. They didn't do both sides...she had a massive stroke during surgery. It was a combo surgery...something the drs at loyola had never done before. She's doing okay, still worry about the other side. I am just so glad I saw the Prime Time live report...I am so thankful for your web site. I am hoping to now FINALLY learn more about my mothers disease. Blessings to all of you that have been diagnosed and to the doctors diagnosing this disease!! THANK YOU< THANK YOU Michelle Ott
michelle ott <>
centennial, co USA
Thursday, January 11, 2007 at 09:09:48 (EST)

My daughter had surgery when she was 5 to correct the MoyaMoya that had affected the right side of her brain. Yesterday we found out through an MRI that it is now on the left side of her brain and that the blood vessels coming up the back of her brain are now narrowing. Her neurologist says there is nothing that can be done to fix the back blood vessels. Is there anybody out there that knows if this is fixable? If so PLEASE let me know ASAP. My email is I will check it off and on today in between making all the other the arrangements that go along with getting prepared for this. Please also keep her in your prayers. Thank You.
Tina <>
Trinity, AL USA
Wednesday, January 10, 2007 at 10:22:18 (EST)

As you can see my name is Moya--I have had 3 brain surgeries involving AVM and ANEURYSMS since 1996 latest one June 2006. I would like to know who and why they named this Moyamoya please. I will be happy to share my experiences. Kind Regards, Moya Runyan
Wednesday, January 10, 2007 at 09:43:56 (EST)

my sister was 1 1/2 when she got moya moya...she is now 6 years old on sept.3rd 2001 her left side of her body got paralyzed then 2 weeks later her right side.then she had a stroke.she was able to see but she couldnt move.a year later she had another stroke and got blind. she has a mind of my littler bother..a 7 month old baby.she recognizez us by our voice.with the help of therapy she starts to roll around she had therapy for 2 years then they stopped it thats all she does now roll around and talk her baby talk. i was 11 years old when this happened to her now i am 16.for my mom and i it is very difficult.we have to carry her everywhere she weighs 47 lbs.i personally think that those of you who are able to even type or read and talk,you are the lucky ones.yes things happen for a reason but y to my little sister.a little inocent girl one and a half years old...she ran played and loved to take pictures,she loved to watch we dont know what she likes..we need to do something to get more information.
Cynthia <>
harbor city, ca USA
Wednesday, January 10, 2007 at 02:52:32 (EST)

My 17 year old daughter was diagnosed with moya moya and have to do surgery. Do you know of any surgeon specialized with moya moya that have done surgery and how successful was it.
claudette <>
new york, ny USA
Tuesday, January 09, 2007 at 16:10:48 (EST)

Hi, I'm 20 years old and I was diagosed with MoyaMoya for 3 months ago. I would really appreciate if someone would write to me and tell me about how everything has been for them. At the moment I feel kind of lost because no one, not even my doctors, knows anything about MM. And if theres someone with MM in sweden, snäääälla kontakta mig :)
Sanna <>
Linköping, Sweden
Sunday, January 07, 2007 at 03:36:54 (EST)

I just praise the Lord every day that my moya moya disease was caught before I had a severe stroke. I'll post my story when I have more time.
Thursday, January 04, 2007 at 16:37:24 (EST)

My dtr was 5 when she had her first episode of a TIA. Confussion, nausea, slurred speech and facial droop. They did an EEG and said she had a focal seizure and went on a med for it never to have another episode. They repeated the EEG every summer. Going into 4th grade they said the activity was gone and took her off her meds. 1 yr later she had a migraine sort of attack. Took her too the neurologist he said migrains. Then she had a few more. I didnt see migrains I saw strokes. I got a new Dr. He said it looked vascular. They did an angio and found the moya moya. Im a mom. And a nurse. I never was satisfied with the diagnosis they gave her. I knew they were strokes but never heard of Moya Moya. 2 yrs ago now she had the revascularization on both sides. 2 days in the hospital and never had anything for pain. She has been in RSP for Math and Language Arts. I guess you can say she had mild learning disabilities. All her testing showed she could not process things. Infact when she was 11 she was tested by a Neuro Pshycologist and her conclusion was that she ranked as showing she was simular to having a brain injury. Its been 2 yrs now since her surgery. One in Oct the other in Dec. and she is now mainstreamed in highschool and out of RSP and she made Color Guard for the highschool. She never was coordinated. It has changed her life. She is a typical teenager. Noone would ever know that she had anything wrong. Shes my miracle baby.
Lisa Nichols <>
Mission Viejo, Ca USA
Tuesday, January 02, 2007 at 19:49:35 (EST)




My Story
DJ's Story
My Pictures

1st Surgery
2nd Surgery
Medical Info
Guest Book
Message Board
Links Page


2003-2006 All rights reserved. All information on this site is protected by international
copyright laws. You may not re-distribute any information from this site without written permission
from and the webmaster of this site. Violators will be prosecuted.