Moyamoya.com
Internet support for those diagnosed with Moyamoya Disease

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

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

Let other families know you're out there!

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

Click Here to add your entry to the Guest Book!


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

Main
Homepage
DJ's Story		 Pictures
Moyamoya Family
Las Vegas 2005
Orlando 2006
SPECT Scans
DJ's 1st Surgery
DJ's 2nd Surgery		 Medical Info
Moyamoya?
STA-MCA
Surgeries		 Communicate
Guest Book
Message Board
Archives
New LIVE Chat!		 Shop MM.com
Online Store		 Links
Links Page
Netiquette

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment. moyamoya.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!

 

Click here to email DJ

 

®2003-2006 MoyaMoya.com. 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 MoyaMoya.com and the webmaster of this site. Violators will be prosecuted.