Internet support for those diagnosed with Moyamoya Disease

Guestbook Archives from Jan 2004 - Dec 2004

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My name is Melinda,34 yrs old and a mother of a beautiful 3 yr old son (Chase). I've been officially diagnosed with Moya Moya today. I am a 20-year Insulin Dependant Diabetic, I have been experiencing intermittant numbness, fainting spells, nose bleeds and extreme numbness in the extremities for about 1-year. Every physician seen stated, "Secondary to Diabetes," without any furter investigation. Recently, I had a heart attack about 2 months ago with complete left sided numbness, underwent heart cath no infarct found. Had a neuro work up, told possible light stroke, MRI/MRA done, displayed no right hemisphere signal with white matter and decreased signal left hemisphere, evidence of a previous stroke. I underwent Cerebral Arteriogram a week later, told left/right hemispheres were blocked R>L. Unsure of etiology, possible Cerebralvascular Occlusive Disease. Went to Emory University, poor diagnosis, told Arthersclerosis, dismissed for 3 months, told to take Liptor and 3100mg. Aspirin daily, told unable to treat due to the excessive narrowing of my carotid artery. I wasn't too happy with the answers given in addition, the coldness I received on that visit, took away my sense of security, knowingly the untreatable condition I have, could be fatal or a debilitating stroke. I sent my information to multiple neurosurgeons across the country, a Neurosurgeon in California, responded to my request, told possible Moya Moya Disease. Needed further evaluation, I had the needed testings to reassure the diagnosis. I will be undergoing my first STA-MCA surgery, Dec. 1, 2004 at Cedar Sinai Hospital. Its' a breath of fresh air to finally know what is wrong, still a long road ahead of me. Wish me luck..
Melinda Mayfield <>
Douglasville, GA USA - Tuesday, November 16, 2004 at 13:44:51 (EST)

My name is Jane my daughter Chloe has moya-moya she is 5 she was diagnosed when she was 1. She has had surgery on both sides of her brain which were both sucessfull.If anyone has a child who has moya-moya please contact me I would love to hear from you. jane
driver mumu <>
ABA, mo USA - Wednesday, November 10, 2004 at 04:41:19 (EST)

My 7 year old nice who lives in Hungary has just been diagnosed with severe moya moya and needs surgery.She already had a bad stroke and we worry that she could have another if she doesn't get operated on soon. Can anyone recommend a hospital in Europe where they had good doctors and successful operation for this condition? How about in the US? Since it is unlikely that the Hungarian insurance will pay for her surgery we are looking for foundations that could help us. Please let me know if you have any suggestions. Thanks! Judit
Judit <>
USA - Tuesday, November 02, 2004 at 01:26:27 (EST)

Sorry my email address was typed wrong my keying has always been bad before the stroke and after. But the surgery has helped it some and I think my spelling has inproved as well.
Becky Rozeboom <>
mn USA - Sunday, October 31, 2004 at 15:58:26 (EST)

Hi my name is Katrina Marsh, I am 15, and just recently got diognosed with moyamoya. My mother Sandra Marsh died when i was 8 years old. The doctors never knew what happened to her, so when i started having the same simtoms we didnt know where to turn. I recorded all of my "episodes" in a calender i had bought. I went to my normal doctor and discussed the simptoms i had been having. From their i went and had tons of blood taken and many other tests run. I was so tired and just wanted to know what was wrong. And then hope came, doctors came, i found out. WOW! I never excpected this to happen,what was i to do now? My life had totally changed. But the doctors were brilliant, why was i so scared? My dad and i prayed constantly, and i am so glad now that i had the surgery. We are still waiting to see what happens on the other side,no signs have shown through yet. So thanks to all the doctors,and especially my dad.
Katrina Marsh <>
Kaufman, tx USA - Wednesday, October 27, 2004 at 14:07:30 (EDT)

My name is Michelle and I've just been possibly diagnosed with moyamoya. I say possibly diagnosed because one moment they are telling me that I have it...the next minute they are not quite sure. I have now sent my angio and MRI scans to Dr. Steinberg's office for a second opinion. I'm a 33 year old female and have no clue how I got it as no one in my family has it and I don't have any underlying diseases that I know of that would cause the possibility of moyamoya. The only thing I can think of is that I used to be a smoker for 21 years and on birth control since the age of 14. I've since stopped both a year ago. I started having TIA's about 2 months ago, and of course had no idea what was was happening to me. My right side would go numb or weak whether it be fingers or my arm or leg and then more recently the face has started to become affected with slurred speech at times. Pretty scary! I'm just waiting to find out if I'm one of the numbers that have moyamoya and if I'm a candidate for surgery. I'm trying to lead a normal life by working and doing things I like to do in hopes that I don't have a major stroke with permanent damage.
Michelle <>
Fredericksburg, VA USA - Thursday, October 21, 2004 at 17:51:24 (EDT)

My name is Becky and I am 23 years old from Minnesota. I have unilateral affected Moya-Moya on the left side. I recently had the STA-MCA bypass and encephalomyosynangios. My surgeon Dr. Fredric Meyer at Mayo Clinic was so incredible!!!! I barely lost any hair. Even when he found my temple vessels were too small and then he had to reroute it to collect a vessel from my forehead. I just lost a pencil line around the cut line. Any one who wants the Best surgeon where if you had long hair you wont loose much. Also He is the best because he talks to you like you are a person not a hunk of meat like a lot of neurologists do. If you want the most personable and well informed and respectful of ones hair line the go to Dr. Meyer form the Mayo Clinic in MN.
Becky Rozeboom <>
MN USA - Sunday, October 17, 2004 at 19:18:06 (EDT)

i have moya moya disease i was diognosed in 1995 when i was twelve and inthe december the 10th i was then in surgery within eight days i had the EDAS surgery on both sides of my head i also then developed the secondry disease to moya moya which excuse my spelling is called cariercathatosis i have suffered the TIA's since i was 7 but the doctors thought i was epeleptic until i was twelve i am now twenty one years old and i still suffer from moya moya but my simptoms have become less since the surgery and i also concider my self very lucky as i have never had a major stroke but in my research i have found that moya moya is quite common in the third and fourth parts of life so thats my only worry now is that i may have my major stroke then can i also say that this is a very good idea this web site
joanne mitchell
USA - Sunday, October 10, 2004 at 10:38:27 (EDT)

myseven year old daughter(ashanti)havemoya-moya.she have had a total of (6) strokes in the last two years.she have had both of the surgies done on both side of her brain.the last strokehave left her able to talk,walkand she is bed child just don't have moya-moya.she also have sickle cell,so that make here risk much higher.she goes in the hospital every other weekfor blood trefusion.i have been told that there is nothing else to be done.but what we are doing and all of the med that we are given is all that can be done.i have been told that there is no cure for other of these i am asking that every one just keep on praying that some one will find a cure for this moya-moyadisease.may god bless each and every one.thank you for reading my story.
arthena m lwashington <>
shreveport, la USA - Saturday, October 09, 2004 at 13:55:57 (EDT)

My wife has just had a stroke at 44 years old. She has been diagnosed with this disease. She is a Caucasian and my understainding from the neo surgeon is that this is a predominately a oriental disease that effects women
Ross Shimodaira <>
Delta, BC Canada - Thursday, October 07, 2004 at 19:10:22 (EDT)

Hi everyone... my 7 week old daughter has had a major stroke at birth and is currently still too young to undergo an andiogram. I have had her looked at in Singapore and the NEUROLOGIST suspects MoyaMoya to be very possible. The Doctor is even recommending surgery when she reaches 3 to 6 months of age when they can confirm it. Can anyone pls recommend a Neurologist in the United States that is used to handling stroke victims at this age. I am willing to go to the very best doctors to get a second opinion and if need be surgery for her. Appreciate any help. I can send records and scans first.
Alex Li <>
Makati City, 1200, Philippines - Wednesday, October 06, 2004 at 11:58:59 (EDT)

SHREVEPORT, LA USA - Wednesday, October 06, 2004 at 10:12:41 (EDT)

Hello, im a 36 years old man and last week, the Docs told me, that ive Moyamoya. Its hard to hear about that. Its also hard, that in german language we dont have much informations about moyamoya. God bless all people, which have moyamoya In Christ Arno Gabriel
Arno Gabriel <>
Sinn, 35764 Germany - Tuesday, October 05, 2004 at 06:45:27 (EDT)

I'm the mother of the 32 year old "grand daughter" in Atlanta and the daughter of Bev in Indiana. Don't worry, Mom. We, as a family, will get through this together as we always have done in the past. It's your love and support that has given your three children the courage and strength to get through all that has come our way. All of our laughter, love, prayers and compentent medical personnel and facilities will get us through this. And this I believe with all my heart.
Sandy <>
Atlanta, GA USA - Monday, October 04, 2004 at 22:01:40 (EDT)

My 32 year old grandaughter has just been diagnosed with Moya-Moya disease she is in Atlanta GA and I am in IN and seem to be at wits end, the more I read about it the worse it seems, I would like to hear from someone in similar circumstances. Thank you, Bev
Beverly Needham <>
Osceola, IN USA - Saturday, October 02, 2004 at 13:13:13 (EDT)

Hiya well I was searching around for some information on this disease since my friends always ask what it was and I could never really give them a straight answer.I used to have horrible headaches I would scream and cry and throw up and everything possible. My parents would take care of me giving me advil and a cold compress an things like that but of course it would never go away instantly always last about 2-3 hours before I would pass out from exhaustion. Then I started getting weird effect like slurred speech not being able ot think of words (which by the way still happens but not as frequently) numbness in the left side of my body and dizziness. So most of the symptoms I suppose. When I was 9 Had surgery on both sides of my head and stayed in the hospital for a while. I had staples down both sides of my head when I started going to a new school (my parents had retired that summer so I had to change from a town school to a school closer to home) Starting at a new school was strange because people would stare at my bandages and staples but none the less I grew to make many friends and as my hair grew and I started to look a little more normal again I kept those friends and made even more. Welp I'm 18 now I'm attending college. I have a large group of friends and graduated with Honors from my high school. I figure I turned out okay....but sometimes I wish someone would understand why I can't speak too well sometimes or get headaches and dizzy about once a month. So if there's anyone about my age out there who wants to chat please e-mail me!
Stacy Matsuo <>
HI USA - Monday, September 06, 2004 at 16:28:34 (EDT)

looking for info to know if surgery always means no futher problems and # of women that have vaginal vs. c/s births
mary <>
beverly, ma USA - Sunday, September 05, 2004 at 12:28:34 (EDT)

My son Joshua (5 1/2) Was diagnosed with Moya moya about a month ago. He had had no symptoms other than occasinal blurred visions, headachs. We are schedule to be in Stanford with Dr. Steinberg for two surgeries from Sept.19-Oct.5. Mny one who has infor long out of school, how long before he goes back to soccer, baseball and t-ball. How long before he feels better? Any experiance with Stanford? Should I have a hotel booked the whole time (even when I am with him at the hospital) of just book a room in between surgeries? How much pain will he be in? Can I get away with not having a car, if the hotel offers hospital shuttles? How do you worring parents and people every get any sleep? Thanks for any advice Stacy
stacy <>
sherman Oaks, Ca USA - Saturday, September 04, 2004 at 03:26:11 (EDT)

wow. nice site! my name is karl, i was dianosed with moya moya back in 1994 in topeka k.s.. i had a massive stroke of my right brain. they told me the same story nothing they could do surgery would be too dangerous. i was told by my physical therapy doctors to live my life and not to worrie about a disease. so i spend last ten years concentrating on recovery and living a normal life. in another words i was in denial. that all change a month ago. i started to headaches so i went in to see my doctor. what i thought was migraines. he suggested i go see Dr. Micheal Lawton of UCSF. that led to a angiography. that led DR. lawton confirming the moya moya disease. now the answer is different. he can do surgery to help me. so i will be going going under the knife in nov. it was nice to hear many people has done this and was sucessful. and now i am comming to terms with my disease. hopfully my story help some and/or let some of you know what not to do...:)good luck to all you you guys. it's nice to know we are all in this together. next is rehab and recovery! the future looks very bright for all of us. like my friend has told me: " keep your head up and keep looking foward".
karl chen <>
san francisco, ca USA - Friday, August 27, 2004 at 12:06:16 (EDT)

Hello, My name is Lilian and I am a 19 year old girl from The Netherlands. When I was 15 I was diagnosed with moyamoya.But it took almost 2 years before the doctors found out what was wordng with me. It sarted with me beiing tired all the time. That was around the age of 14. I couldn't do all the thingds my classmates could, and it got even worse. And eventually I was tired after a normal day of school.When I git home I had to rest until supper, and after that I rested again. And about 9:30 pm I went to bed, and got up at 7:30 am, and still I was tired all the time. When I was 15 I had a stroke and after that my speech was terrible. Than began the exemeniations. But nobody found out what is was. At the age of 17 , they finnaly got it, and I ws diagnsed with moyamoya.I had never heard of it and on the internet I couldn't find any info, yeah nd something but it was only negative. Than there was another problem, my insurence company wouldn't pay for the surgery, until my nurosurgeon called them and explained what was wrong and that it had to happen. And they decided I could go,I can't tell you how happy I was. 7 May 2002 I went to Boston and had the surgery, I had 4 bypasses on my left side and 5 on my right side. By now I am fine , nut ometimes i still find trouble when I talk, most of the time it's allright , but sometimes people have to ask me to repeat something, and that buggs me, but there is nothing I can do about that. Well that was my story ( sorry for my poor english )
Lilian <>
Netherlands - Tuesday, August 24, 2004 at 10:48:01 (EDT)

Hello, my name is Nicole, I am 14 years old I was diagonosed with moya moya two years ago. I had two surgries done and now my life is back to normal, accept sometimes i feel like i cat do anything because my family and friends are alway worried about me, so they dont let me do somethings or are always bothering me and telling me to be cardful i know they only do it becasue they dont want me to get hurt but i know what to do and not. I guess i just wanna know if there are any teenagers out there who have moya moya too?
Nicole <>
USA - Saturday, August 21, 2004 at 23:21:51 (EDT)

My wife is 42 and I am a physician. I was lucky to have taken her to barrow's for stroke, she suffered 2 months ago.Dr Spetzler diagnosed her as MM adult onset.A genius as far as I am concerned.I have been to six different neurologist and it was hard to pinpoint exact DX.Yesterday she underwent sta-mca bypass and doing very well.Reading all medical Lit.and your site I was completely convinced that my wife has MM. Thank YOU very much.By the way Dr.SPETZLER is world famous for above surgery and I highly recommed him.-keno
keno <>
peoria, az USA - Tuesday, August 17, 2004 at 15:10:02 (EDT)

Still waiting for Shannon to go to Standford. They are ready for her there. We have been waiting to see if Medicaid will help pay for the surgery. It seems like it is taking forever. mominlaw
mominlaw <grandma_rmus>
Beatrice, Ne USA - Monday, August 16, 2004 at 12:49:43 (EDT)

I am 27 years of age, today. I found out about 3 weeks ago, that I have had Moya-Moya since I was about 7, if not before. I am a mother of two small children, and I feel lost. I was diagnosed at 7 with Complex Migraines without the headache. I had severe seizures, which my neurologist now says were 'Mini-strokes'. I am scheduled to see a specialist in Charlottesville, VA on 8/16/2004, but I am barely able to function. I wake every morning with blurred vision and weakness in my entire left side. I don't even try to speak for at least ten minutes. Every afternoon, about 1:00, I get to the point where one more step and I think my head is going to explode. Almost every night around 8:00 I have a full-blown seizure. My left leg and arm loses all control. The left side of my face goes slack and my speech slurs. My children are 3 & 5. You can imagine how terrified they are when Mom gets sick. My husband has shut himself off, and refuses to talk about this illness. I have not received a prognosis, yet. I lost my job, and am not able to function well enough to even find a new one. I'm scared, frustrated, and can't stop worrying about everything. I was doing some research on-line, and found that this disease could possibly be hereditary. Now, I'm concerned for my children's health. I guess there is alot going on in my head, but I just keep living the best I can. I just pray everyday that I can get treatment before something terrible happens. Is there anyone else, out there who has symptoms this severe? Can you please email me with some ideas of how to function better on a daily basis? Please send some hope my way. Thank you.
Leana Timbrook <>
Augusta, WV USA - Thursday, July 29, 2004 at 01:03:09 (EDT)

Hey, My mama was diagnosed with MoyaMoya back in umm...i think...1998 when she lost my little brother...he was born but he came WAY early...and she suffered from a stroke and a hemorage...and it nearly killed her...she was at work one day and she just blacked out and then the next thing we knew we was on our way up to Augusta...and her doc. is Dr. Nicholls. but if yall wanna tlk to me thats my e-mail
Brandi Greene <>
Milledgeville, Ga. USA - Wednesday, July 28, 2004 at 11:43:10 (EDT)

Wow! I can't believe I finally found other real live people with this disease. It's been a long two year road with Moya moya. I was one of the luckier ones diagnosed before major stroke damage. I had 4 surgeries in 6 months - 2 of which were artery grafts to give me new blood supplies on either side of my brain; one was to evacuate a subdural hematoma from the 1st surgery; then they did an additional treatment with titantium mesh and multiple burr hole across the top of my scalp. The 4th surgery was emergency surgery because I bumped my head a month after the surgery for the evacuation and started the subdural bleeding again. The last surgery was just over a year ago. I've been having numbness in my left hand and arm ove the last few months and just had an angiogram Friday, and the neurologist said the blood flow was definitely impaired on the right side of the brain. She said that my surgeon would look at the angio study over the weekend and see what ideas he could come up with. When my neurovascular surgeon, Dr. Eric Nussbaum of the University of Minnesota, who is absolutely BRILLIANT, had done my right side surgery, he had said the artery on the surface of the brain he connected the scalp artery to was pretty small, but it was the best one he could find. So it is not surprising I'm having symptoms a year later. I'm just thrilled to find I'm not the only one. I just try to keep going - keep up my faith and sense of humor! By the way, my dog's name is - MOYA! God bless! ginabean
ginabean <>
Apple Valley, MN USA - Sunday, July 25, 2004 at 04:20:54 (EDT)

I am a 58 year old female who was diagnosed with Moyamoya in the summer of 1998. Initially, I experienced numbness in my left hand and arm. Testing was at first diagnosed as MS until a radiologist noticed the telltale "smoke" in the circle of Willis. I had bilateral procedures done (Dec 98, Jan 99) at Barnes Jewish in St. Louis--Dr. Dacy. Between the surgeries I experienced a series of TIA's that resulted in loss of sensation in my right side (although the motor function remained). In addition, I have been in rehab for several months due to troubles with expressive aphasia, apraxia and memory dysfunction. Since the diagnosis and surgeries I was forced to resign from my position as a school superintendent in rural Missouri. I am now on full disability retirement. I take blood pressure medication and aspirin. There has been a progression of loss of sensation on my left side and increasing loss on the right. It's OK--God's in control and has a plan, although I haven't figured out how Moyamoya fits yet.
nan <>
Columbia City, IN USA - Friday, July 23, 2004 at 16:02:41 (EDT)

Hi my name is Kevin.I was diagnosed with MM.I am a 46 year old male.Thanks to your web site I have been in touch with Dr.Steinberg and his wonderful staff and awaitng insurance approval.I am new to this and thank DJ and everyone for your story and information. Thanks again,Kevin
Kevin Allen <>
Delaware, Oh USA - Wednesday, July 21, 2004 at 09:01:32 (EDT)

Hi DJ and everyone else reading this. I am a 32 year old mother of two and was diagnosed with moyamoya last September after suffering a stroke just 2 weeks after my youngest child was born. I had had no symptoms until the stroke to give me even the slightest idea that anything was wrong and the diagnosis of moyamoya was terrifying at first. I have had both surgeries, my first was in October and my second was in December. Both were done by Dr.Newell at Harborview medical Center in Seattle,Washington. I feel great, just about as good as new but I do have a question that has been weighing on my mind... since I had the surgeries, does that mean I am cured and that I don't have to worry about it anymore? I have 2 young children and I want to see them grow and get married and have children of their own, is it possible. Please anyone who can help, I'd appreciate it. God Bless You All - Diana
Diana incent <>
Elmendorf AFB, AK USA - Saturday, July 10, 2004 at 03:56:13 (EDT)

Wow! I am a single mother to Mason, (just turned 1 yesterday) who has been diagnosed as having unilateral affected Moya-Moya. Thanks for all the info on your site. Whe have been refered to Barrow Institute in AZ for prelim. testing to determine if bypass surgery is necessary now. My son suffered a MCA stroke, and a brain stem stroke, and at this point, 8 months from the first stroke, they are now rec. more testing to determine when and if surgery is necessary now. Thanks for all the info on your site!!!!!
Lindsey <>
Milwaukee, WI USA - Monday, June 14, 2004 at 01:32:34 (EDT)

Hi i am a 36 year old house wife my husband is 39 and in December 2003 my husband was diagnosed with moya moya we made the decision in feb 2004 to have the surgery his neuro surgeon thought that it would help him in the long run he was having mini strokes that had effected his speech but no serious physical problems he had the surgery on april 22.2004 it took three hours the doctor came out and said everything went fine but four hours later in intensive care he had a serious stroke that made him not able to move his right side and made his speech much worse he spent a week in intensive care another 4 days in the hospital and 4 days in a rehabilitation institute it has been seven weeks and he was recovering preety good he is still doing out patient rehab he is about 75 percent of were he was. until yester day we went to see some friends for the first time after his surgery and get him out of the house on the way out the door leaving he compleatly passed out fell and hit the floor he had what i believe another stroke or seisure he turned white and was sweating really bad we called an ambulance and when they got there he was starting to come around his color was coming back he was still confused some but mostley knew what was going on they took his vitals which where all good and he didnt want to go to the hospital so they left and said call them back if anything else happened. today the next day he dosnt seem to be any weaker or changed im going to call his neuro surgion tommorow monday morning and see what they want to do.i am so scared i have been crying my eyes out all night and today. what a horrible desiese this is to affect such young people i wish they could find out more about this i feel so helpless.i wanted to know if anybody has any advise or a simular situation that they would like to talk to me about please i would love to hear it thanks and god bless
christy <>
louisville, ky USA - Sunday, June 06, 2004 at 14:16:10 (EDT)

My middle sister, Kristina, was diagnosed with moya-moya about three years ago. She is planning finally to have the surgeries. The doctor wants to perform them as soon as possible. She will be at Stanford for two and a half weeks. Can someone who has already had the surgery answer these questions for me? Should I stay with her for the entire two weeks? Will she want me there both before and after the surgery? Or would she rather me be there during the month recovery at home? Her husband, of course, will be there. But Kristina has me and our other sister, Lorie, too. We are all very close. I was thinking maybe I stay one week up there, then our other sister the other week. Or should we just be there to help during recovery once back at home? DJ, thank you so much for your Web site! Kristina seems not so scared now about having the surgery. Your story is exactly like Kristina's. Thank you!
Rhonda <>
Harlingen, TX USA - Sunday, June 06, 2004 at 14:01:03 (EDT)

Hi. I am needing some opinions from all of you who have a definate diagnosis of moyamoya. Here's why(and it's a long story)In September of 2002 my mom had a massive stroke and subarachnoid brain hemmorage. The only warning sign she had was a severe headach about 30 mins before she collapsed, lost all conciousness and began to posture immediately. At the hospital they ran a CT scan showing a large bleed in her head then they did an angio and said that they suspected moyamoya, but then they said no, then maybe, then no agian. She spent a month in a coma on a respirator. All of the doctors were telling us to pull the plug that she was't going to make it and if she did she would be a vegetable. Well we DID NOT pull the plug and she came off the respirator and began to awaken from the coma. Now, almost two years later she had recovered to about 80% and had even started staying by herself and even driving agian until Wednesday when she suffered another massive stroke and bleed, this one even larger than before. The docs once agian told us she would die and once agian(so far) she has prooved them wrong. She is totally responsive and even talking (with a blood clot covering 1/3 of her brain) Before the first stroke she had had no numbness or tremors or even recuring headaches. Does this sound like moya moya to yall? It is written on two pages of her chart, but none of the doctors have even mentioned it or given us a definate answer. What do yall think? And if so, what is the likelyhood of me or my sister having it?
nikki <>
USA - Sunday, June 06, 2004 at 02:23:48 (EDT)

I have to tell you that my sister had her surgeries done at the Mayo Clinic in Rodchester, MN. They were wonderful there and treated us all with respect. Thank god for them or we still wouldn't know what to do. Dori
Dori Miller <>
Manitowoc, WI USA - Friday, June 04, 2004 at 23:11:36 (EDT)

I have a sister who has moyamoya. It took us 8 years to find a dr. who was able to diagnos her. She has had surgery on both sides and has some residual effects, but is doing well. Now we are fighting with the state to get her MA. This has not been easy on any of us.
Dori Miller <>
Manitowoc, WI USA - Friday, June 04, 2004 at 23:04:52 (EDT)

My name is Kristina and I was diagnosed with MM 2 1/2 years ago. The doctor gave me the option to have the bypass surgery but I was and am too scared to take his advise. Recently, I have been confused and am having frequent TIA's. My sister has encouraged me to go back to the doctor but the problem is that he moved from Dallas TX to Wyoming. Is there any recommendations for a neurosurgeon in Texas? I live in San Antonio and find it difficult not to mention expensive to travel. Thanks for your comments.
Kristina West <>
San Antonio, TX USA - Tuesday, June 01, 2004 at 10:09:56 (EDT)

I am 36 years old, married and have 2 children. I was diagnosed with moya-moya Jan. 2003. So far I have done ok. No surgery. Just plavix and asperin. I guess the headache and occassional dissyness and not knowing when another TIA is coming is the most frustrating part. I still work full time with no problem but have more sick time than I like. My boss is cool about it but the problem is no one can tell you are sick. You are the only one who knows how you feel and sometimes I wonder if he really beleaves there is anything wrong with me. Anyway, I really like the web site. Thanks. David
David Farthing <>
NC USA - Monday, May 31, 2004 at 10:24:22 (EDT)

Mike, welcome to I am a neighbor (of sorts) to you over here in San Jose. I don't have MM, but my sister in NJ does. (That's where we're from.) I hope you join us on the message boards, if you have not already. The people here, with their wide variety of experiences with this disease, can share so much about what you can expect, what kind of treatments are available, and who the best medical professionals are in your area. From everything I've read here, your decision to contact Stanford is the right one. Dr. Steinberg is well-known in this branch of neurology and has treated many of the people here, including DJ, the owner of this website. I'll pray for Chris, and also for you as you try to get a handle on what can be a frightening load of information to "download" into your life. Diane
Diane Main
San Jose, CA USA - Sunday, May 23, 2004 at 18:25:17 (EDT)

My Name is Mike and I am the father of Chris. He is a 14 year old boy. He was diagnosed with "unilateral moyamoya" the left interior carotid is the one affeced. As of this time he has not had any stokes. He complains of a Headache some times. UCSF Child Neurology was the place that has done most of the work on chris. In February of 2003 I was told to monotor him and give him baby asprin. They also did a work up chris's cognitive abbilities as to monitor any loss of mental abilities. Please excuse my bad spelling. I am having some trouble trying to keep this together. I was told that they did not know if it would affect my sons lifespan. I now belive this to not be true. We are now working to get chris's records sent to Stanford. I want to do everything posible to prevent this stroke. I made some phone calls yesterday. Got some stuff started, I think. I will check again tommorrow. Chris is such a mixed bag of stuff. ADD/HD they went from "Learning Disabled" to "Retarded" last year. He is in special day class at school in the 8 th grade. I think this is enough for tonite. thank you for bein here.
Mike Bryant <>
Ft. Bragg, CA USA - Thursday, May 20, 2004 at 19:29:24 (EDT)

I have a son who is almost 11 yrs old and is 7 yrs post left-hemispheric stroke due to Moyamoya. Dr. Robert Dauser at Texas Children's Hospital performed EDAS & Dura-inversion (his "invention") on both sides of Kyle's brain (two separate surgeries: rt. side 5 days post-stroke, the left side, 3 wks post-stroke.) Angiograms at 5-mo post-stroke showed dramatic improvement of blood flow/supply. The stroke effected his speech and upper right side. He had speech therapy for about 3 1/2 yrs (the last 2 were only 1 x wk at school, so, FREE!) and is still seeing an OT at school 30 min/wk. He has minor paralysis in his pinky, ring and middle fingers on the right hand with very little sensory feedback from the fingertips, therefore he is learning to type with just his left hand. When he trys to smile, it's lop-sided, but his spontaneous smile is perfect! He has struggled with reading and writing tasks, but was diagnosed with Attention Deficit Disorder (not Hyperactive) last summer and 40mg of Strattera/day has shown improvements there. God bless you, DJ for creating this website! I recieved a few pages written by a nurse about surgery for Moyamoya when Kyle was in the hospital. A friend of my sister-in-law's had found it on the net. I can't tell you how many times I've read it - it was the only thing I had! I still search for information - what effect will this have on him in the future (20, 30 yrs from now)?????? Dr. Dauser's Dura-inversion procedure can be found in the Journal for Pediatric Neurosurgery, April '98. He is still at Texas Children's (a heavenly place for sick children) should anyone want to contact him or his staff. In 97, they told us they saw about 2 moyamoya patients a year. I bet that has increased, just due to better diagnostics and information dissemination. I will send pics later.
Sue McFee <>
Sugar Land, Tx USA - Wednesday, May 19, 2004 at 17:40:59 (EDT)

Hello everone I know it's been such a long time since I posted;my life has just been so crazy and one rollercoaster after another. I wish I could get a breakthrough someplace, everything is bad now very bad im' trying to hang in there but wow im' giving 110% and I can't get a break;im' fighting the good fight but faith and hope are carring me only so far....
Fairbanks <>
Cleveland, Oh USA - Monday, May 17, 2004 at 10:41:55 (EDT)

HELLO TO ALL!!!!Please see my message post on the Message Board about the meeting I had yesterday with Merrill Lynch Trust Company Private FAmily Foundation Services----it was fabulous..........By the way, as a result of a small inheritance left to me by a dear friend, I paid our attorney for his services. Thus, the new name of the Foundation will be "The Jerry DeMarzio Memorial Moyamoya Foundation---Helping Hands, Caring Hearts....." d/b/a The Moyamoya Foundation.....Come the the Message Board and check it out......we need all of your help....and, it doesn't have to be financial at all......just your time, talents, and the gifts that the Good Lord has bestowed upon you in those areas.........Also, blocks of rooms have been reserved at the Holiday Inn, Montvale, New Jersey for the "Get Together in the NOrtheast by an anonymous benefactos....Before the big gathering at my home on August 29th (which has now turned into a serious "block party", on the 28th of August, when you arrive at the Holiday Inn in the morning or the afternoon, there will be a free poolside barbecue with some local bands playing as entertainment.....I will be shuttling back and forth between my drum corps reunion at my house that day and the Overflow Shelter program at my very dear friend, Denise Scopas will be there to greet you, as well as some of my other friends, when you promises to be a great weekend......I need RESPONSES.....HOw many adults and how many children from each family will be coming.....The sooner you respond, the better it is for me.....have 2nd EDAS surgery on June 4th, and I KNOW that Dr. Connolly will be telling me to rest and PLEASE PLEASE respond (RSVP) to the post on the website as soon as possible. Love to you all.......PatM
PatM <>
Woodcliff Lake, NJ USA - Thursday, May 13, 2004 at 05:21:52 (EDT)

I was surprised to hear about this website from the "parentingchildrenwithmoyamoya" webgroup. My daughter was diagnosed last summer (July 03) when she was 7 yrs old. Thankfully she had never had any symptoms. She was diagnosed after a routine MRI which is done every few years because she has Neurofibromatosis type 1. I was not getting enough advice in my opinion. I was warned that she could suffer a stroke and what to do and where to go and not to go on vacation etc etc...the doctors seemed reluctant to do anything until after a stroke had occurred. It blew my mind. I managed to track down Dr. Scott from Boston Childrens and had her Angiogram films shipped to him. She had surgery on the right side in early November. So far, oddly enough there are no signs of problems on the left side. My daughter has done wonderfully. Learning issues have dramatically improved with the increased blood flow. Doctors say that won't happen but it has for my daughter. I think that it is much less common for diagnosis before stroke and I am sure that has alot to do with the fact that many people do not improve if infact they had issues beforehand. My daughter has improved a great deal, I am sure because she now has additional blood/oxygen flow with no brain stroke damage. This tuesday (5/4) she is scheduled for her first post surgical MRI. I am so anxious to hear if the revascularization has been significant. She is due back in Boston in Nov for a repeat Angiogram and to recheck the left side to be sure it still seems ok. To the Webmaster, Thank you for doing this. It is as you said, much needed and of great assistance to many. Keep up the good work and stay healthy. Thanks, Julia
Julia <>
, - Sunday, May 02, 2004 at 19:27:24 (EST)

hi there, i have moyamoya and had the opps, i am after some info about the effects that my strokes have done. had 1 stroke but did not realize it, it efected my speach. the second stroke i realized because i had i really bad headache for 4 days then after visiting my hospital and having a mri or cat scan, found out it was a stroke. the thing is the second stroke damaged my eye sight, ihave a field visual defect in both eyes at top left so i have had my license revoked. does anybody no of re-training the brain as i no ure brain can us other parts for other things( as my speach came back). i no this probly sounds funny but i will not let mm take other my life. thanks and i hope everybody keeps well, god blees u all. r.s
r spicer <>
cambs, Uk - Wednesday, April 28, 2004 at 14:53:34 (EST)

my 9 yr old daughter was just diagnosed with moyamoya, we have gone through some tests and she needs a couple more done, but we have surgery scheduled with Dr. Steinberg for may 18th for the right side and the 26th for the left side...she has been having TIA's since august..and so far no stroke..we hope to keep it that way. we are scared, and nervous abou the surgery but the outlook is good. everything seems to be happening so fast, the doctors said we are very lucky she hasn't had a stroke, the right side is pretty bad..they said about 99 percent blocked..and the left about 20 percent. hope this finds you all well and doing better, i will post an update after the surgeries...take care
Hillary Hoben <>
stockton, ca USA - Tuesday, April 27, 2004 at 20:20:46 (EST)

Hi DJ---I was wondering if you would consider listing my neurosurgeon Dr. E. Sander Connolly, Jr. under the "moyamoya links" portion of the website as a "moyamoya specialist" He has done at least 51 moyamoya surgeries and he is truly excellent.....and a fantastic demeanor and bedside manner. He is under the Columbia Presbyterian link, but if he was listed as a moyamoya specialist with his own link, more people would know about him.....If you waant more information about his qualifications, you can e-mail him at esc5@columbia.ed. I think he would be pleased to speak with you. thanks.
PatM <>
Woodcliff Lakw, NJ USA - Monday, April 26, 2004 at 14:43:54 (EST)

Hi everyone. I am a 42 year old who has had two strokes and was finally told that I have MM in June of 2003. The news really took the wind out of my sails as you can imagine. After being told by my doctor and the doctors at Duke U., that there was nothing could be done for me I almost gave up. That has been 8 months ago and I'm still here. I am so glad I found this web site. I am not alone as I thought. I feel great joy for those of you that I read about who have had the surgey and are doing so great. Hopefully there will be more understood about MM and maybe there will be help for me. Now it's just some med's to help with the symptons and alot of prayer. I wish to thank everyone for allowing me to finally share some of this with people who can understand!
Jeff Vonglis <>
Johnson City, TN USA - Monday, April 26, 2004 at 08:17:29 (EST)

I am Brenda's husband and A.K.'s dad. Brenda is to see Dr. Rose on April 26 to discuss surgery on the left side. I'm so fearful that she will have a major stroke while she is off of her Plavix prior to the surgery. Please give me some thing to go on.
Robert R. Kelly <>
Port Arthur, Tx. USA - Saturday, April 24, 2004 at 15:42:57 (EST)

We are all here for you Sandy, and for those 4 beautiful children of yours....God will take care of all of you.
PatM <>
Woodcliff Lake, NJ USA - Friday, April 23, 2004 at 16:12:46 (EST)

I am a single mom of 4 children my oldest child was born having tia's I was told that it was just a freak thing that only happens to one in ten million it will not happwn again.well i waited 3 yrs before i had another child i was so scared so a c-section was done just in case but after 2 mths my son was having strokes and believe it or not social services was called to the hospital and was told it was shaking baby syndrome my babies were taken from me but to shorten the story i had them back within hours a friend of mine from hospice got on the internet and explained the symptoms and we got a response back from Dr. Michael Scott in Boston by this time 8 mths went by after talking to the Dr. we flew to bosto the very next morning with angels in flightmy son is doing much better since the surgery he still has a lot of problems from the other strokes.well i came home to have my tubes tyed guess what ti late i decided to keep the baby cause Dr. Scott told me he would help me if the baby had moyamoya i am glad i did cause i now have twins one had the moyamoya and one did not the surgery was done so quick on the one that now i have 2 healthy children and2with alot of special needs and i an sitting here crying because i have been on the internet since 98 looking for someone who can share my feelings with who knows what i am going through I would like to say what has kept me strong just remember that god will never give us no more than we can bare God Bless each and every one of you
sandy <>
asheboro, N.C USA - Friday, April 23, 2004 at 14:30:14 (EST)

Hi everyone. I had the first EDAS surgery on the right side of my head this past Friday, April 16th and all went well. The other surgery on the left side will probably be in June. I was home from the hospital on Sunday afternoon. Just wanted to let you all know that I am doing fine and that the party on August 29th is shaping up to be something really, really great. Hope that alot of you can make the big shindig.....
PatM <>
Woodcliff Lake, NJ USA - Wednesday, April 21, 2004 at 08:03:52 (EST)

DJ, It is so nice to see that you are doing well. I remember talking you through the surgery. It is amazing how time flies. For those of you who don't know me, I had a stroke in 2000 when I was 17yrs old and was diagnosed a few months later. In August of 2000 I had my first surgery with Dr. Steinberg and had two more in the weeks after the first one. It has been a few years since my mom,me and you chatted. Well I have a fiance and a daughter on the way in June, which is kinda weird because it was June when I was diagnosed. We will get our daughter checked for the disease as soon as we can. I believe it is very unlikely that she has Moya Moya. Everyone who has Moya Moya or loves someone who has Moya Moya knows how hard it is to cope with. All I can say is hang in there and have faith. If you do not have faith then you will never overcome this disease. DJ you have truly done a good thing with this website to help educate. Please Take Care, Brian
Brian Farren <>
Phoenix, AZ USA - Friday, April 16, 2004 at 07:34:49 (EST)

i am alive . thank you GOD
marlene smith <>
Palmyra, Ny USA - Thursday, April 15, 2004 at 01:40:42 (EST)

I have moyamoya .Iam33 Iwas 25 when I started having problems,my left arm,left leg,would give out on me.I went to the Dr.they sent me to strong memorial hospital for an mri.after many tests .They told me I had MoyaMoya. Iwas floored and had no idea what it was.I had surgery in 1998 right after that Ihad a stroke.Ihad to learn everything all over. Now 5to6 years later Iam doing alright. God Bless
marlene smith <>
Palmyra, Ny USA - Wednesday, April 14, 2004 at 10:53:00 (EST)

Hey, My name is NIcole i wrote on the guestbook before. I just wanted to know if there are anyone is a teenager and is diagnosed with Moya Moya. Thank you Bye
Nicole <>
USA - Thursday, April 08, 2004 at 15:19:42 (EST)

I was Diagnosed with moya-moya in 2000. The one and only true medicine/surgery that I believe that still has me here today is my faith in God, although the Med & Surgery did help.
Jennifer Santellana
Houston, TX USA - Saturday, April 03, 2004 at 09:11:07 (EST)

Thank you,Amy, and all the girls in Deborah Circle who are praying for me and all moyamoya sufferers....and all of the people at my church and all of my friends and family. I will be in Las Vegas (hopefully, winning big) until the day before, I am spending the days before my first EDAS surgery (on April 16th) having a blast and just relaxing with friends and family....Be well, all of you, and remember that God loves each and every one of us.....
PatM <>
Woodcliff Lake, NJ USA - Friday, April 02, 2004 at 01:18:16 (EST)

Pat, remember we are all praying for you. God has brought you this far and will continue to guide you and bless you.
Hillsdale, NJ USA - Tuesday, March 30, 2004 at 09:26:30 (EST)

I was first diagnosed with MoyaMoya in 2000, right after my second child was born. I was having TIA's, and I was blessed to have been diagnosed within four days of seeing a neurologist. He didn't know what to do for me, so I got on the internet and searched. I found Dr. Michael Scott at Children's Hospital in Boston, and after reviewing my case and meeting with him, I had two brain surgeries. I have been symptom-free for almost four years now. I do take an aspirin daily though. I flew cross the eastern border to find a wonderful surgeon who is leading MoyaMoya research. Do whatever you have to to survive this disease!!! There is hope!
Joanna <>
NC USA - Friday, March 26, 2004 at 07:42:04 (EST)

Hi, My name is Ian Bustard and my 7 year old son Joe has just been diagnosed with Moyamoya. We have been told he needs to go to Great Ormond Street Hospital in London for surgery which has my wife and myself very concerned. We have read lots of the storys posted on this site which are of great encouragement to us especially the video clip as the young boy is around the same age as our son.Can anyone tell us roughly how long the surgery takes and how long Joe will be in hospital?
Ian Bustard <>
Belfast, UK - Wednesday, March 24, 2004 at 13:29:13 (EST)

Hi, my name is Nicole and I was diagnosed with Moya Moya one year ago, I was 13 and now I am 14years old. I got the surgery for both sides. When I first find out I had it, I felt alone and no one could understand what i was going through and the feeling helpless because my sypmtoms was my arm and leg wacking out or all of a sudden not being able to write and do homework. I am 14 and all i what to do is have fun and hang out with out anyone being scared that i might get hurt or hit in the head, i am now home for a week because of the surgery and i just what to go out and have fun. And thats my story.
Nicole <>
USA - Wednesday, March 24, 2004 at 12:51:45 (EST)

My husband Dan(49 yrs. young) was diagnosed with MM in August 2003. Unlike many of you he was told that his chances of survival would be about 20% if he opted for surgery. I'm not sure the location of his MM has anything to do with it, or the severity of cerebral hemorrhage he suffered in June 2003 is the reason for no surgery at this time, but I am sure after reading all the success stories from ya'll that we will be checking out some more options. Thanks to everyone for giving us a reason to "Hope". God Bless, Ronda
Ronda Whitsitt <>
Evadale, TX USA - Tuesday, March 23, 2004 at 14:59:36 (EST)

Hi Everyone! I'm the new "kid" on the site. My name is Kris. I'm 35 years old. I had a slight stroke December 2002 and via angiogram was finally diagnosed with MM November 2003. Just found a great doctor Wednesday (17th) at Emory University Hospital in Atlanta, GA. His name is Dr. Daniel Barrow. He's the first Dr. I've found that actually knew what MM was AND had experience with bypass operations. It was just a "comedy of errors" up to this point. Glad I finally have a direction to move forward in! I've been scheduled me for a SPECT scan on April 1st. Glad to have a group to communicate with! Thanks, DJ for setting up this site!
Kris <>
Greenville, SC USA - Saturday, March 20, 2004 at 15:40:32 (EST)

hi, my name is christy. june 2003 i had a stroke at the age of 21. after having an mri and angio done i was diagnosed with moyamoya. i looked up information online but found little answers. my doctor told me not to believe everything i read, so i was put on blood thinners and would just have to hope for the best. since my stroke i have experienced multiple tia's and headaches. thinking this was all that could be done i continued working and going to school believing things would be ok. my eyes have now been opened and i have found that there are doctors and friends here to help.
Christy <>
kennesaw, Ga USA - Monday, March 15, 2004 at 15:05:01 (EST)

Hi. My son had a massive stroke at age 10 due to moyamoya. He is now l9 and attending community college. His website is which may be helpful to those with kids. Also, there is a pediatric stroke network that many families might find helpful for the kids. My son was completely and globally aphasic (language impaired) due to the stroke at l0. Now, 9 years later, most people don't even think he has a disability as he talks so well. Thank God for Speech Therapists! :o) We recently got a group of 20 stroke survivors on a cruise-we had so much fun sharing stories and getting to know one another. We'll probably due another one in 2006. Email me if you want a flyer on it - it is helpful for people to go in a group - we found it just terrific.
carol dow richards <>
madison, oh USA - Sunday, March 14, 2004 at 10:08:04 (EST)

I am a relative of PatM, and Diane her sister, and would like to add my prayers for all the sufferers of Moyamoya. I am sure that faith can, and will, help. Keep strong and God Bless.
Janet Rigby
Cheshire, England - Saturday, March 13, 2004 at 04:48:54 (EST)

Elwood, your post made me think of a couple of things that might help, based on what I know about my church and some of the people who attend. Here in my county of California, we have a service of our local transit authority that helps disabled people go places (I see the vans bring blind and wheelchair-bound members to church). Do you have something like that available to you in Ohio? Also, see if your church has a food pantry where you could get food when you need it. It's a lot more discreet that going to a soup kitchen . . . but there's no shame in that, either. I will keep you in my prayers.
San Jose, CA USA - Friday, March 12, 2004 at 17:37:52 (EST)

Hello everone I have some good news, Im' not terminal anymore ;I do have some new symptoms though. My story or at least part of it My friends call me fairbanks ,but my proper name is Elwood Sadowsky. I am 29 years old;I am of japanese decent.I have been around the world and from one end of the united states to the other.My mother is japanese and my father is german.I have not had the best of lives but I always managed to get by.I have not seen or herd from my mother since I was seven,My father was a very abusive alcholic who, used to beat the living daylights out of me. I survived and left home when i was seventeen ; I did graduate from a privte school with a 3.25 gpa ,I then went to college on grants for four years. I studied commercial art for three years and then saw there was a very limited job market at the time. I went back to college and studied hospitality management. Soon after that I started playing semi- pro hockey with a echl team in Albany; After a few years I had to retire from hockey because of my back and I totally blew out my knee,I tore all of the ligaments and needed surgery. After playing hockey I started working in hotels and chain resturants I was applying some of what I learned in college. I kept working at differant places so I could learn more. Eventualy I worked my way up to the executive sous chef position I ran the entire kitchen of a four star fine dining resturant where I was untill I had my first major shutdown. I'll post more later take care everyone fairbanks
fairbanks <>
cleveland, oh USA - Friday, March 12, 2004 at 11:31:45 (EST)

Hello everone I have some good news, Im' not terminal anymore ;I do have some new symptoms though. My story or at least part of it My friends call me fairbanks ,but my proper name is Elwood Sadowsky. I am 29 years old;I am of japanese decent.I have been around the world and from one end of the united states to the other.My mother is japanese and my father is german.I have not had the best of lives but I always managed to get by.I have not seen or herd from my mother since I was seven,My father was a very abusive alcholic who, used to beat the living daylights out of me. I survived and left home when i was seventeen ; I did graduate from a privte school with a 3.25 gpa ,I then went to college on grants for four years. I studied commercial art for three years and then saw there was a very limited job market at the time. I went back to college and studied hospitality management. Soon after that I started playing semi- pro hockey with a echl team in Albany; After a few years I had to retire from hockey because of my back and I totally blew out my knee,I tore all of the ligaments and needed surgery. After playing hockey I started working in hotels and chain resturants I was applying some of what I learned in college. I kept working at differant places so I could learn more. Eventualy I worked my way up to the executive sous chef position I ran the entire kitchen of a four star fine dining resturant where I was untill I had my first major shutdown. I'll post more later take care everyone fairbanks
fairbanks <>
cleveland, oh USA - Friday, March 12, 2004 at 11:31:45 (EST)

Hello everyone it's fairbanks again;I just read my mail and now Im' replying.I am a semi - religous person I try to attend services but it doesn't always work that way.I also see two psychologists every other week;my problem is 1-I was told I can't work anymore (time being) 2- I have no income 3- I don't have any food 4- I live alone 5- I don't qualify for alot of Ohio State benefits. I am not alowwed to drive because I lost my peripherial vison to this disease. I have seen way too many doctors than I can name.I have had this disease since birth; I have had many strokes and way too many shutdowns. I was told it's a miracle I lived this long . I have no corrotid arteries in my brain I have very few blood vessles left in my brain;I have had so many tests I should glow in the dark. some humor there.. I've been called the" miracle person" Next time I log on I'll share a bit of my long moya moya story.
fairbanks <>
cleveland, ohio USA - Thursday, March 11, 2004 at 06:28:48 (EST)

Elwood---Keep the faith. You are not alone. You now have 106 new friends to help you through this. Be well, friend.
PatM <>
Woodcliff Lake, NJ USA - Thursday, March 11, 2004 at 04:39:19 (EST)

I can realy use some help here,I have been diagnosed as being terminal and I have advanced stage moya moya.I had an operation on my brain done december 8th of 2003 after being diagnosed in june of 2003. I am having so many problems.I feal so alone, I can not do this alone anymore;I feal all alone in this world.I lost most of my friends and I am showing a lot of my symtoms again.I miss my life and my friends so much.I am trying to live off faith and hope but that does very little for me.My world has stopped andI'm alone.I don't remember how it feals to be loved or to be held and told It's ok .Someone please help me....
fairbanks <>
cleveland, oh USA - Wednesday, March 10, 2004 at 06:12:19 (EST)

ABA,NAIJA, ABA NAIJA - Monday, March 08, 2004 at 11:02:30 (EST)

thanks so much for this website.I was dx. with this disease 1997 and have been unable to find any infor. except till recently.I suffered a bleed in my brain thats when I had my first by-pass and the second one in 2002.I still have the tias,severe headaches and it freaks me out every time.
sherry greene <>
milledgeville, ga. USA - Monday, March 08, 2004 at 07:38:44 (EST)

DJ could you please tell me how you just get on a chat line like we use to or do we just respond to any subject we want to.I still don't know a lot about this PC and I don't see how you talk to someone if they are on the same time you are Thanks. Carol
Carol Santellana <>
Houston, Tx. USA - Saturday, March 06, 2004 at 16:51:59 (EST)

Hi DJ. Wow---this website is great. My sister, Diane, in San Jose, found this site just today and I was surprised to see her here. This is my story. I am an attorney, married, with 3 daughters, ages 13, 10 and 4. In April, 2003, while vacationing in the Dominican Republic with 2 other families, I suffered a series of "minor" strokes. In the several months leading up to our vacation, I had been experiencing pins and needles in my left hand, aching of my left arm, and slurring of my words on occasion. I thought I was tired from 60 hour work weeks and just needed a vacation. On the trip, one day right before dinner, the left side of my body went numb, my face drooped on the left side, my arm ached and my left leg dragged when I tried to walk. My fingers in my left hand began to curl up uncontrollably. Well, everyone was pretty freaked. It was Thursday and we weren't returning home until Saturday. The symptoms lasted about 24 hours, but I was exhausted. When I returned home, I no longer had the symptoms but I saw my primary care doctor on Monday. He didn't think it was too serious, but he had me schedule an appointment for an MRI in 2 weeks and to see a neurologist in 4 weeks. Well, 2 days later, I was in the emergency room (because of my wonderful staff who insisted I go the the ER)when some of the same systems occurred while I was walking back to the office from the courthouse. I was admitted and they did blood work, MRI's CTscans, and finally the most painful angiogram(without sedation). The neurologist and the rheumotogist and the radiologists thought that I had a condition called "cerebral vasculitis", but they weren't sure. So,they wanted me to go to NY Presbyterian. But, I couldn't get an appointment for 6 1/2 weeks!! ( I have since learned that you should have your neurologist call the other neurologist directly and say it's an emergency!) In the interim, my friend recommended that I see the Director of Neurology at Westchester Medical Center. I saw him and he also thought i had cerebral vasculitis and he counted 5 strokes on my angiogram pictures. I was immediately put on a decadron drip for the weekend and sent home with a prescription for prednisone, 80mg. Well, then the nightmare began. To make a long story short, I developed steroid induced psychosis---spent 16 days in the psychiatric ward of a local NJ hospital (a VERY unpleasant experience, saw many psychiatrists and neurologists, and was not diagnosed properly with moyamoya disease until I went to NY Presbyterian in August with severe mania (formerly Columbia Presbyterian). I don't even remember the first few days there----but all the tests were redone----and the diagnosis was moyamoya. My right carotid artery is basically completely occluded and the left is not much better. I have been monitored by the neurologists at NY Presbyterian, but as of Feb 17th (after a carbon dioxide reactivity test, another MRI and a transcranial doppler), they recommended I see Dr. E. Sander Connolly, a highly respected neurosurgeon at NYPres. I saw him on March 2nd and he was really great. He explained the EDAS procedures (he even has some pictures of the procedure in his office) because I will have to have 2 surgeries, one on the right side of the brain and the second on the left. The first is scheduled for April 16th and the second one will be done about 2 months after that. I am also seeing a neuropsychologist at NYPres for cognitive functioning tests on Mar23 and 25th. After the 2 surgeries, I'll be tested again to see if there is any loss of cognitive functioning. Sorry this was so long, but I haven't told you even half of it. If I can be of help to anyone, please let me know. I am not really too computer savvy (But my sister, Diane, is!!!) so I don't know how to post pictures, etc. on any website. Thanks for making me feel that I am not alone. God Bless you for creating this website.
PatM <>
Woodcliff Lake, NJ USA - Thursday, March 04, 2004 at 14:26:40 (EST)

My sister in New Jersey is 43, and she was diagnosed this past year with moyamoya. It all started around a year ago, and they first diagnosed her with vasculitis in the main artery to her head. Unfortunately, they were wrong, and the prednizone they gave her to treat it really messed with her for a long time. They finally determined that she has moyamoya and not vasculitis. She will have the first of two EDAS surgeries April 16th '04. The second will be in June '04. This is all so new to me.
San Jose, CA USA - Wednesday, March 03, 2004 at 22:14:06 (EST)

After having horrible headaches for the past 11 years, and many doctor visits, hospital visits, MRI's, CT's etc, I suffered a stroke on l/25/04. I am a 39 year old female with a husband and two small daughters. Luckily, I was not left with any neurological damage from the stroke. I live in Monroe, Louisiana and the doctors here did not know what caused my stroke and sent me to Dallas Texas for a second opinion. I was diagnosed with MMD after several test. My neurologist, Dr. Dion Graybeal at Southwestern University Hospital in Dallas is wonderful. My doctors here in Louisiana have never even heard of MMD! I am on a large amount of meds and have a follow up visit with Dr. Graybeal in Dalls on Monday (2/l). He said that the blockage on the right side of the brain is 50% and left side is 40%. I don't know if he feels that surgery is an option for me for some reason. I will find out more at the visit. I am very scared at what is ahead for me and my family. But, am grateful for a reason for all my headaches. I was begining to think I was going crazy! Please email me with any advice or words of encouragement.
Laura Schwab <>
Monroe, LA USA - Thursday, February 26, 2004 at 11:58:40 (EST)

In December of 2000, my then 5 year old son Charlie had what was thought to be a seizure. Six weeks later while suffering from a similar episode, which was in fact a stroke. He quickly underwent a CT scan and MRI/MRA. He was diagnosed with MM. We referred to Dr. Michael Scott in Boston at the Children's Hospital. Dr. Scott confirmed the diagnosis of unilateral MM. Charlie had surgery performed in April 2001. His recovery was remarkably smooth and quick. He is now three years post surgery and doing great. At our one-year followup exam, Dr. Scott described his revascularization as "spectacular." He continues to go for MRI/MRA scans yearly as we have to monitor the right side of his brain. He also takes a daily baby aspirin. We were fortunate to have gotten a quick diagnosis and referral to a competent doctor with extensive experience treating MM patients. We feel very fortunate and very blessed!
Lisa Wright <>
Lemont, IL USA - Saturday, February 21, 2004 at 19:24:21 (EST)

Hey d.j,I had to drop you a line to thank you for your web site,it's fantastic.My daughter Christine is 28 and is married to a wonderful guy,his name is richard,and they have three young children.christine was diagnosed with MM back in 2000,she has had 3strokes,and then suffered another stroke during her surgery.Her surgery went for 18 hour's,and as it turned out the surgery was not successful,she has more problems now than she did before.She loses her vision quite often,falls over without any warning,has slurred speech (which gets worse under any stress)memory loss weakness and numbness on her right side.The doctors refuse to operate again as they say that it would be to much of a risk.I know that this is the hand that she has been dealt,and I know that we all must cope,but were do we go from here?It is so difficult to see her get so frustrated when she can't do certain things.anyway d.j.thanks again for being the person that so many sufferers and families can talk to. kind regards and best wishes Peta
peta <>
Perth, W.A Australia - Friday, February 20, 2004 at 03:36:39 (EST)

My 42 year old husband suffered multiple ischemic stroke in 12/02 and was originally diagnosed with moyamoya disease. The biggest stroke resulted in 100% occlusion of the left interior carotid. We were originally told that there was nothing more to be done and he was placed on Heparin therapy while in-hospital and cumadin when he was released. Our HMO required we see a non-specialist neurologist. We live in Southern California and were able to successfully fight the HMO for treatment at UCLA. Ironically enough, the dreaded moyamoya diagnosis was what enabled us to successfully fight the HMO for treatment at UCLA. Dr. Chelsea Kidwell, a stroke specialist there, came highly recommended and was experienced with this disease. Immediate testing requested by her determined an insufficient blood flow to the left side of the brain which left him at significant risk for major stroke. We were referred to Dr. Neil Martin at UCLA; a much-recognized neurosurgeon with lots of experience with moyamoya. After another successful fight with the HMO, Dr. Martin performed a superficial temporal artery to middle cerebral artery bypass in March, 2003. My husband has done extremely well since surgery and, although he continues to have some cognitive and visual spatial deficits, has been able to return to work. Through the expertise of Dr. Kidwell, Dr. Martin, and the neuro-radiologists at UCLA, we have learned that my husband's diagnosis may not be moyamoya. No one can say for sure, however, his films apparently do not reflect the tell-tale "puff of smoke" appearance of abnormal vascular growth) At this point, no other explanation for his vascular disease has been found and moyamoya continues to be a possibility. My husband has had no further episodes or symptoms and we're told will need to continue repeat testing every 6-9 months in order to detect any progression of blockage. The last tests done in 6/03 showed that the by-pass was working and there was no significant change. We are in the process of scheduling the next round of tests and are hoping for the same. For anyone out there with a moyamoya diagnosis, I strongly recommend that you seek out a neurologist who is familiar with this disease. As you can see from our case, had we not done so, my husband very likely would not have had the recovery he's had. Insurance companies can be tough but they can be fought successfully. For anyone out there who is having difficulty obtaining insurance authorization for treatment by a neurologist experienced with this disease, I would be happy to tell you what worked for me. Without a doubt, I would highly recommend Dr. Kidwell or Dr. Saver, both stroke specialists at UCLA and, if surgery is recommended, I believe there's no one better than Dr. Martin. Wish us luck with our next set of tests.
Jane <>
USA - Thursday, February 19, 2004 at 08:05:00 (EST)

I was diagnosed with Moya Moya in 1990. I was 8 years old. I am now, as an adult, trying to learn more about what I have. I have been almost symptom free since my surgeries. I still have periodic numbness in my body. It is different than it was before the surgeries. I will just feel a little part of my body tingling. It will be, for example, just the tip of my tongue, or a small part of my finger, or face. It always comes and goes quickly. Just this past July, I started having some shaking in my right hand. It sort of moves with a mind of its own. My neurologist put me on Keppra, which is a seizure drug. It helped with the numbness and the shaking, and also migraine. I really want to get involved like I never have before. I came across this web-site, and am so happy that DJ has put forth the effort to give us all a place to feel normal. I am intrested in talking with anyone who needs it. I am interested in finding people who were diagnosed as children, and are now adults, to see if any of you have had similar issues as I have. I would like to help parents of children going through what I did. I would like to give some inspiration to those who may not see a light at the end of the tunnel. I remember what I felt about having Moya Moya when I was 8,9,10,15,18... years old. If anyone has a question or a comment, or anything, I would like to get involved. Feel free to e-mail me at and I will get back to you quickly. I have been very blessed in my life. I had wonderful parents, and friends, and doctors! Please, let me be a part of this wonderful group.
Sara <>
Houston, TX USA - Tuesday, February 10, 2004 at 10:12:49 (EST)

Iam here because of my daugher-in-law. she was dianosed with MM and needs the surgery. Need to fine out a few things and sure this web site will help. Thanks D>J
mominlaw <>
Beatrice, Ne USA - Tuesday, February 10, 2004 at 08:44:36 (EST)

I'm here because my sister-in-law has MM. Three years ago she was diagnosed but before she could have the surgery, she had a massive stroke. She's now disabled and unable to speak. We searched the net back but found nothing for her (it was all about children). Until today, I decided to see if there was anything new on this today and Thank God for you DJ! Here is this website. She feels so alone with this. I can't wait to get her up here and show all of you wonderful people.
sisinlaw <>
Beatrice, Ne USA - Sunday, February 08, 2004 at 14:32:05 (EST)

Hi,my name is Sue,I'm 39 years old & have been recently diagnosed with MM.All seemed fine until about 6 months ago when I had a stroke (but luckily regained all movement quickly) & now suffer TIA's.I've had MRI's,MRA's & an angiogram.Now I'm due to see a vascular neurosurgeon next week to discuss surgery.I can see from the message board that surgery is quite successful.I suppose I have a few questions as I'm in the process of selling my business & moving into a unit of my own.How incapacitated do you become after surgery and for how long? I'm wondering if I should move in with family or should I finish my unit before surgery.I'm a independant type of person but am trying to be as practical as possible.How long does recovery time usually take? Does it improve your short term memory or is memory problems here to stay? Love the site!
Sue <>
Sydney, NSW Australia - Friday, January 23, 2004 at 17:09:59 (EST)

Hi my name is Carol and we live in Houston,Texas.My daughter Jennifer had a stroke on her left side when she turned 18 and we learned she had MM. She finished her senior year and had her surgeries in Aug.2000.After she had her surgies we learned she was also pregant.She had Kandice May 2001 and everything has been really good. Her doctor was Dr. Kim Dong and was really wonderful.He has moved to New York now.Would love to hear from the new ones.I know a few already.God Bless. Carol
Carol Santellana <>
Houston, Tx. USA - Sunday, January 11, 2004 at 22:51:29 (EST)

hello my name is anthony eason(tony).i was diagnosed with moya moya a month ago!i haven't heard of this disease until now!4 months ago i had a headache for almost day while riding with my son(marcus)it started to hurt again.marcus, said dad please get it checked out,i scared something is going to happen to i went to the doctor. i thank GOD for my first i couldn't turn to any one else but my LORD and one else didn't understand. mayomayo what is this shock my family.they have been so strong for me(wife,kids,mother,sisters inlaws,brothers,friends)but they didn't have any clue what was going on,but you guys do!!!GOD has used DJ in a special way.thank you a appointment with neru tomorrow. pray for me. tony 1/07/04.
anthony eason(tony) <>
lexington, n.c USA - Wednesday, January 07, 2004 at 03:48:17 (EST)

I am a 31-year old female who was diagnosed with MM in August, 2003. I had just suffered a stroke a few days after delivering my second son in July. I recovered the numbness and weakness on my left side, but then I continued to have TIA's Iwent to Baylor UMC in Dallas to try to figure out what was wrong. After an arteriogram, yhe MM was discovered.My husband, Matt and I were shocked, and began searching for information. We read how bypass surgery was the treatment, so I underwent the surgery on August 20,2003. It was performed by Dr. Sam Finn, and everything has been okay since. I have pretty much regained all function on my left-just some weakness in my left hand, so I count myself very lucky. My family was a great help. My sisters and the grandmas helped take care of my newborn, Hayden in my absence. I have since returned to work as an elementary special ed. teacher. I am hoping that the good news will continue upon further checkups, though my doctor has expressed concerns about the back right artery narrowing. He feels a future surgery may be necessary-Anybody out there heard of any other MM people having stenosis of their back arteries as well as the sides? I have enjoyed this website-it has been a comfort to read others' stories,and if anyone wants help or further information from me, please email me. Tricia Gilbert
Tricia Gilbert <>
Lewisville, TX USA - Thursday, January 01, 2004 at 13:03:08 (EST)




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