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Internet support for those diagnosed with Moyamoya Disease

Guestbook Archives from Jan 2005 - Dec 2005

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Like so many others that have visited this site, I need to thank all of you for sharing your stories. This was the first and only place that gave me hope and comfort after being diagnosed with moyamoya in August of '05. After reading so many stories in this guestbook, my head was reeling trying to figure out what "the answer" was going to be that could help me in my particular circumstance. Then I read a message from someone else from Apple Valley, MN - and she had my same neurovascular surgeon (Eric Nussbaum, and yes - he is absolutely BRILLIANT)! I knew then that I would be okay. On September 23, 2005 I had an EC-IC bypass at St. Joseph's Hospital in St. Paul, MN. I went home 4 days later and have had a successful recovery. I returned to work full time on October 24, and aside from being tired as I try to get back into the swing of things, I have no other complaints regarding my condition. I wanted to respond to someone that had difficulty coming out of the surgery, in hopes that it might help someone else - the morning of my procedure I informed my anesthesiology team that under no circumstances, was I interested in coming out of surgery with a hole in my head and feeling like I needed to vomit! I requested a scapalomene (probably not proper spelling) patch and anything else to keep me from dealing with my usual post-anesthesia nausea. They did a great job of keeping me pain-free (and NO nausea), I even felt "good". Another site that was tremendously helpful to me throughout my experience was www.caringbridge.com It's a great way to communicate your healthcare status with loved ones and for them to respond in a non-invasive way. You can read about my procedure by going to that site, clicking on "visit" and then typing in "beth". It will give you an idea of how much the people in my life appreciated being able to keep abreast of my surgery/recovery as it was happening. I'm grateful that I knew about the site prior to my surgery. I consider myself incredibly fortunate to have found out about having moyamoya prior to any stroke. I urge people to advocate for their own healthcare and to keep asking questions (an often exhausting experience), because if I had taken the word of two respected medical professionals I never would have known that I had moyamoya. They read the results of my cerebral angiogram, decided that everything looked fine and told me to check back in a month. It probably would have only been a matter of time before something far more serious occured. My prayers and best wishes are with anyone who has come to this site looking for answers. I know what it's like to be scared to death when hearing that you are facing critical health issues. There is hope. Sincerely, Beth
Beth Wakefield <wakeupmommy@hotmail.com>
Apple Valley, MN USA
Saturday, December 31, 2005 at 17:42:30 (EST)

Hello Everyone My name is Bob Pekowsky and I share your trials with Moya Moya. Since 2003 I have had 4 strokes and uncountable TIAs. Finally, after dealing with severe migraines in early 2005 my neurologist directed me to have flow CAT scan and the radiologist diagnosed Moya Moya. The rarity of the disease was such that no one really knew what to do. Thanks to DJ and this site for providing the information I needed to take appropriate actions. Initially, I was set up to meet with a specialist neurologist in Boston, but no appointments were available for many weeks. After reading the information on this site and using the links, I got an appointment with another specialist Lahey Clinic in Bulington MA. He evaluated my tests and immediatley referred me to Dr. Carlos David, a neurosurgeon at Lahey. I was schedule for the MCA-STA in three weeks. That first surgery was of 8-14-05 and was not a classic MCA-STA, because the receptor artery was so poor, Dr. David took a small strip of muscle from my temple that was attached to the external temporal artery and attached it to the surface of the brain. The resulting arteriogenesis would take about 3 to 6 months and would result in restored blood flow to the left side of my brain. This surgery was very successful and I was home 4 days after the surgery. My secon surgery was Nov 2 2005 and was the classic MCA-STA. Again, I was home in a few days and back to work in two weeks. After a month of restricted work, nothing to reais my blood pressure, I was given unrestricted work clearance. I have an occasional headaches, but no other after effects, not even TIAs. I wish you all luck, this is very scary, but there is light at the end of the tunnel.
Bob Pekowsky <rpekowsky@comcast.net>
Portsmouth , NH USA
Friday, December 30, 2005 at 19:24:21 (EST)

Hello,just wanted to wish everyone a safe and happy holiday ,and "thanks again DJ"You are totally awsome -Lori-
Lori Miller <shirereeves@yahoo.com>
Anderson, SC USA
Monday, December 26, 2005 at 23:23:37 (EST)

Hello my name is tammie and i also have a child with moyamoya at times its so hard to know why my baby got this bad dieas she didnt do any thing wrong to deserve this but i guess this is the way god wanted her to be she is 5 now but in all she has had 10 mini strokes 4before she was 2 and5 before she was 4 and 1 before she was 5 it has been hard when she was small she couldnt tell me anything on her next to the last one she had a bad headach and she started throwing up on her last one it hit her like a ton of bricks she was playing at k4 and all of a sudden she could not walk. but every one that meets her falls in love with her she is this amasing little girl that everybody loves and she loves every one she meets she is big hugger she has to give every body a hug.i dont know how this little person has took as much as she has took she is my little fighter and god as ajob for her on this earth.o dont know if any one else has had this many strokes if there is please let me know and dj thank you so much for having this website im like you i didnt know anything about until savannah surgery and know i see all these presious people with this a bad deisae. anybody that wants to im me feel free to do so. tammie and savannah from alabama
Tammie
SPRINGVILLE, AL USA
Monday, December 26, 2005 at 18:21:23 (EST)

Hello,I am Lori and I have MM disease.I found out about MM Aug.1,2005 after having several mini-strokes,in which the left side of my body was affected.I did not know what was going on but,knew something was wrong when I started having involuntarly movement in my left arm and hand and a different kind of numbness in my left leg.I had been feeling really tired and just was not myself for a while.Normally I have always loved sports especially skating(roller,in-line,& skateboard),playing basketball and football with my 12-yr old son.I guess you could say I am a 38 yr-old kid when it comes to being outgoing and not affraid to jump in the game but,I was just so tired.I went to the hospital ER that night after I realized the numbness and muscle weakness was not going away and I was just so tired.My visit to the ER turned out to be a seven day stay which changed my life.When I arrived at the ER they started taking blood and gave me a Cat-Scan.My bloodcount was 6.2 and therefor was admitted for a bloodtransfussion.After several test,two MRIs,an Ultra-sound for my chest and a vaginal Ultra-sound,I was taken to surgry for a hystorectomy to prevent extra blood loss.I learned of MM and my first response was -BLANK-and then my thoughts were "huh?"I take medication Trental to keep my blood cells slick and to keep everything moving to prevent blockages.I feel pretty good at the time and have recovered from my surgry quiet well and am looking forward to trying to land that 360 in the skate world.My experience with MM and having MM has made me realize how precious life is and all the reason to keep on being the best I can be in all areas of life.I am a white 38yr.old female and would love to hear from all of you out there.Especially DJ,thank you so very much for your time and effort to this web-site.You let me know I am not alone by sharing your information. **Hope everyone has a very happy & safe holidays** All of you are in my thoughts and prayers.Please feel free to contact me at anytime. Lori
Lori Miller <Shirereeve@yahoo.com>
Anderson, SC USA
Saturday, December 24, 2005 at 13:08:42 (EST)

DJ God bless you, I have recently been diagonosed with MoyaMoya Sydrome on the 25th August2005. I thank the lord for my life. I was taken to hospital as an emergency with a severe headache on the right hand side only. I had this headache 2 days running and thoght nothing of it, I took headache tablets but nothing was happening. On the 20th I went to church as norm on a saturday, I did the reading as I was scheduled to do. When I finished the reading and went to sit down I could not and went out of church dancing around not knowing what was happening with my head. When the service finished I asked my friend to take me home and my friend said no we have to call the abulance not happy with the idea. I was admitted in hospital on the 20th Aug 05 and discharged on the 13th Oct because my headaches would not go, I was given oral morphen, mst,parecetemol,co-hydromol and nothing worked. I lost my memory of spelling common words and where I put things this has improved but still a problem. My doctors do not know how to treat me and have said my treatment will be blood transfusions every 3 to 4wks they believe this will reduce the blockage and I have to take it easy as I am prone to strokes.The neourologist was baffled that I have had no strokes up to now as they believe that this blockage has been there since in my teens.I have sickle cell anemia which praise the Lord has bee under control. I am 50 yrs old. Ater a CT,MRI and an Angiogram the neourologist said I MoyaMoya Sydrome, a blockage in the brain which they think happened in my teens. I had a rupture which sealed itself by the time I had the scans on the 25th and they will not operate due to the high risk brain operation it will require. The diagosis was sickle cell related vascular occlusive pathology. My Doctors have no medication for since leaving hosp my blood pressure has been high and am on tablets for it. At night especially i get aching legs and arms and fingers.In the morning I gv myself at least 30 mins before I can get up. Any one suffers this? I hv a full time job but hv been off work since 20th Aug 05.To tell you the truth I dont know whethere to go back to work I am scared as I hv been told to take it easy my job is stressful working with the public. Does anyone know how long do gv a ruptured artery to heal. Somebody on this message board said its like sitting on a time bomb, IN DID! A lot of MoyaMoya suffers hv survived with surgeries. Has any one been told they are not suitable for surgery. How do you live? Do you still go to work? What has happened if anything? Help!
Chi Chi <Cherub@hotmail.com>
United Kingdom
Friday, December 23, 2005 at 16:53:12 (EST)

Hi, I am a family member of a person with the moya moya disease.
Kim Hagen <Kihagen@yahoo.com>
Albert Lea, MN USA
Friday, December 23, 2005 at 16:23:47 (EST)

I am a 40 year old mother of two and was diagnosed with Moyamoya October 20, 2005. I had been having real bad headaches for about 6-8 weeks (so I thought)it had actually been more like 6months. I was taking Advil like it was candy and just thinking it was more like sinus. I went to work that morning (with a headache) and called my doctor when I got to his office I was apparently having a mild stroke, my tongue was thick, my mouth was tingling, I could not preform a sentence, I could not say what I thought I was saying, I was scared to death!!!!!!! My doctor sent me to have an MRI right then. My husband took to me the hospital to have the MRI. By the time we got back home my doctor was calling to tell me that he wanted me to come back by his office and wanted to admit me into the hospital (he did not like what he saw) and do some test. I was in their for four days for every tests you can think of and my Neurologist diagnosed me with moyamoya. My doctor put me all kinds of medication - Dilantin for seizures, Aggrenox blood thinner, Amitriptyline for headaches and stopped my HRT. I gone the internet as soon as I got home and found out about MoyaMoya and about DJ's story. I am know going to have my surgery on both sides at Stanford University Medical Center with Dr. Steinberg on January 11, 2005 and January 18, 2005. I told my doctor here that I did not want to take all this medicine for the rest of my life and sit here wait for another stroke. I have two kids to raise and a husband to take care of.
Lisa Bell <lbell@conwaycorp.net>
Conway, Ar USA
Friday, December 23, 2005 at 12:11:17 (EST)

Hi Iam Lori Miller from Anderson SC.Iam a 38yr old white female with Moyamoya disease.I learned of this disease Aug1,2005 after having several mini-strokes.I do not know alot about this disease or this computer,so please have patients with me.I was so happy to find this website and to know that Iam not alone.I could really use some emotional support through this and would like to hear from you about how Moyamoya may have changed your life as far as everyday,normal life.One of the problems I seem to be having is staying focused.I am currently studying Criminal Justice,2yr associate degree at Stratford in Washington,DC (home study)to work with juvenile justice.I find it hard to concentrate at times and think alot of it not what I know about Moyamoya but,it is what I dont know about it.This is all brand new to me,and would love to chat and or keep in touch with you (it is nice to know Iam not alone and neither or you!)
Lori Miller <Shirereeves@yahoo.com>
Anderson, SC USA
Thursday, December 22, 2005 at 19:16:34 (EST)

HI MY NAME IS TIFFANY MY 8YR OLD DAUGHTER WAS DIANOISED WITH MOYAMOYA IN APRIL OF 05 WHEN SHE WENT TO THE HOSPITAL THEY TOLD ME SHE HAD HAD A STROKE THEN AND IN 04 I DIDNT KNOW THEY ADDIMITED HER FOR ABOUT A MONTH AND SHE HADA STROKE WHILE SHE WAS IN THE HOSPTIAL AND WHEN SHE GOT OUT AND TWO MONTHS LATER SHE HAD ANOTHER STROKE THEY HAD HER ON BLOOD THINNERS BUT AS OF NOW SHES DOING FINE SHE HAD ONE BYPASS IN SEPT 05 AND DEC 05 BUT ITS REALLY HARD BECAUSE SHE WAS AN HONOR ROLL STUDENT AND NOW SHES NOT THEY SAYS AT A 5YR OLD LEVEL DUE TO THE AFFECT FROM THE STROKES.
tiffany mosley <www.tiffany15565@aol.com>
memphis, tn USA
Thursday, December 22, 2005 at 18:26:12 (EST)

Hello to all my MM Friends. I have finally got moved into my new house in Florida !!!!! Have not finished my unpacking yet.....What a Job.....I'll NEVER move again......Wanted to let you all know I see my new Dr. on the 22nd of Dec. and he is schuling an angiogram for me then I see the surgon that done my second surgery and will probably send my films to Dr Steinberg for a second oppion.. I just had an MRI-MRA done in November and have either No blood flow on my right side or very slow flow. I keep getting these spells where I almost pass out and have to hold my head to keep from fainting. It will be 6 years since I had that side of my brain surgery done on New Years Eve. I'm a little scared and would like to know if this has happened to anyone else ?
Elaine Calvert <elainecalvert@aol.com>
Sanford, Fl USA
- Saturday, December 17, 2005 at 23:53:03 (EST)

My daughter had her 2nd bypass in October and is doing pretty well except for vomiting at least once a day. She is not nauseous, just suddenly has to throw up. They did an upper GI and didn't find an ulcer or anything. I can't believe the bypass surgery would have caused this. Has anyone else had this problem following surgery?
Barbara Miller <brm@lceci.com>
Somerset, PA USA
- Wednesday, December 14, 2005 at 15:05:23 (EST)

Hi my name is Janelle I am a new user,I am just now learning to use my computer I have made some mistakes, so please bare with me.I began passing-out all over the place my family physician said I needed to see a neuroligist. In 1991 I had had my first of five strokes.I was then seen by a rumatoligist. She and my neuroligist agreed to start me on some steroid therapy. This was to enlarge the vessels in my brain that were obstructed. Also I was to begin some chemo therapy that was designed to clear-out the obstruction. So I became bald (chemo),fat (steroids) and bitchy! (just my mood.) After 10 months of that Dr.Codding my rumatoligist sugested that I take all my records,films,MRI results,etc.to see a neurolgist on the N.side of OKC, Dr. Steven Cagle. He did a full neurological examination on me. Dr Cagle suggested he fax all my records etc. to a Dr. in Dallas,Texas.Dr.Duke Samson. A brillant neurosurgeon. After an angiogram Dr. Samson said I needed to have surgery. He scheduled me for an ICEC (intera cranial to extra cranial) bypass surgery on my Rt.hemisphere. That was in May of 1993,during my stay in the hospital Dr.Samson and a few other Dr's decided I also needed an angioplasty placed in the frontal lobe of my brain. After seven years, I began to experience some dizziness.. So again I went to see Dr. Samson. Again I needed surgery. The angioplasty inserted in 1993 had stopped working. Dr Samson scheduled me to have another ICEC bypass surgery. This time in my Left hemisphere. Because of the strokes, I was paralysed on the left side of my body. Also I was left unable to speak. Through months & months of rehab I still have limited mobility in my left hand and arm. I took three years of speech therapy and I'm still misunderstood. It's been 13 years since the onset of my moyamoya diagnosis and I am now symtom free .I pray now for those of you who are dealing with or learning about moyamoya disease.
Janelle Whipple
Okc, Ok USA
- Friday, December 09, 2005 at 22:00:45 (EST)

I am currently a senior at El Camino high school and I am 17 years old. My sister was diagnosed with Moya Moya when she was three years old. She is now currently 20 and she is doing wonderfully. Anyways, I just want to let anyone know that if they ever need anyone to relate to about this, especially any relatives of a person with the diability, I am always up to talk about it.
Alysa Harless <Purtypixiegirly@sbcglobal.net>
sacramento, Ca USA
- Tuesday, December 06, 2005 at 18:15:05 (EST)

I just met Elwood and I feel a bit guilty at having read his inner-most thoughts and feelings that I decided I ought to say something too. I am in love with a man who has Moya-Moya. I'm a bit new at this, so I worry every time he has a stomach ache. You can laugh; I'm joking, but still serious. I met Elwood little over a month ago now and there's just so much to love in him. I know that partly his disease is what makes him the person I love today. He appreciates everything, gives so much of himself, and only wants love in return. Interestingly enough, everyone has their quota of garbage in their lives and I was seeking someone who just wanted to be with me. I found a guy who is tall and handsome as sin; he adores the ground I walk upon and only wants to be with me every minute of the day. My friends laugh and wonder why I don't feel smothered, but honestly I don't even want to go to work because I can't take him with me. Ha, ha! There is life after Moya-Moya everyone. Elwood has me and I have him. I hate the pain he went through and I hate that he had to go through so much with so little to gain medically. I would give my right arm if I could trade it for a normal life for him. Yet at the same time, I am thankful because without Moya-Moya he wouldn't be the man I love.
Tonya
Cleveland, OH USA
- Tuesday, December 06, 2005 at 11:20:10 (EST)

I am a 32 year old who was diagnosed with moyamoya on May 26, 2005 after my primary doctor noticed that I was not looking like myself. I had severe headache (my mom thought I ate too much hotdogs and balogna, she still blames me for it), blurred vision, numbness in my left hand, pain in my shoulder, and fatigued all the time. I wanted to sleep all the time. Because of my mood changes i went to see my counselor at school and at that time I was enrolled as a master/phd program. So I was diagnosed with depression and they gave me anxiety drugs and prozac. One of the side effects of prozac is that it makes a person feel suicidal. So I was in and out of the hospital thinking I am loosing my mind. I finally got in a car wreak and asked my doctor to change my medicine and he agreed to it. Because of me going in and out of hospital and not having any vehicle. I was told that I cannot live alone and finally my parents brought me back home. In one condition that I would find a different psychiatrist that would continue my medications. Then I had a severe toothache and earache so my parents made an appointment and took me too our family doctor in Nashville. I took with me all the medicine I was percribed to me. My doctor took one look at me and said "What happened to you?" and he started to ask me when i started to have hallucination and I said back in January of 2005. So he said that it is very unusual for you to have one of a sudden to have hallucinations. I am going to check and make sure you do not have lupus. That day he ordered an MRA of my head. Sure enough the MRA showed the blockage and he refered me right away to a neurosurgeon and the neurosurgeon ordered an cerebral arteriogram the next day. By that friday it was confirmed that I had moyamoya disease on the right side of my brain. That was when my mother came and found this website and we were able to get in touch with Dr. Steinburg in Califormia. He was a wonderful help because he helped with the diagnosis. He did help us tremedously and called the doctor here in Nashville and consulted with him about my condition. They told me I had 60% blockage and did not have much time to wait. Dr. Standard the neurosurgeon performed the synangiosis instead of a bypass because my ateries were very small. My headache was gone, and as of today I am not taking any medicine. After all I found out I was not crazy as they once wanted me to believe I am. Last week I found out with another cerebral arterigram that I have a blockage on my left side of my moyamoya arteries in my neck. I am going to have a Diamox Spect test done nect week to check the blood flow of my arteries.
Yassi <runity@aol.com>
Brentwood, TN USA
- Saturday, December 03, 2005 at 17:26:59 (EST)

i have been diagnoised with moyamoya diseae.
janelle whipple
okc, ok USA
- Friday, December 02, 2005 at 22:01:16 (EST)

I am a 41 year old ABJ who had an intraventricular aneurysm and was subsequently diagnosed with MoyaMoya. I am a stay-at-home mother of two young boys so this experience has truly rocked our world. Thankfully, I am home recuperating for a month with very little physical or other effects. I feel too good to have gone through what we just went through. Your site is great. My good friend sent me the link while I was in ICU. Thank you for sharing your story and allowing people to share their photos. I will post a photo after we take a family picture. We will be having a quiet, peaceful, grateful Christmas at home while I recuperate.
ML Potter
MI USA
- Tuesday, November 29, 2005 at 11:48:55 (EST)

I have been following this website since Nov. of '03. Not sure why it's taken me so long to finally sign on. But glad to be here and have this opportunity. I am a 37 yr. old white female with four beautiful daughters (16, 14, 10 and 3)who was diagnosed with MM in Dec. of '03, shortly after the birth of my last daughter (March '02). It started with my right two fingers tingling/numb and then eventually my right arm, lasting 5 to 25 minutes at a time). I kept dismissing it as being carpal tunnel. Then while driving with my kids my whole right side shut down. Very scary and finally made a dr. appt. If this is you, please don't wait as long as I did. Had an MRI which showed I had a stroke. Referred to neurologist which treated me for complicated migraines and partial seizures. Symptoms persisted (TIAs and headaches) and doc ordered an angiogram which then they immediately admitted me into Northern Michigan Hospital for a week. Had every test known and was referred downstate to a neurosurgeon Dr. Fessler. He scheduled me for angioplasty and actually had me on the operating table when he decided it was too risky and informed me I had complicted MM and referred me to another neurosurgeon Dr. Diaz. Spent another week in Harper Hospital and finally had a left frontotemporal craniotomy with STA-MCA Bypass and EMS procedure (8 hrs. long). Left hospital with 56 staples in my head among other things. Have been symptom free except for migraines which doc explains as an after-effect of such a long and traumatic surgery. About July of '05, I started having numbness/tingling in my left hand and foot and sometimes my right hand as well. Went to local neurologist in October (again, I waited too long) and doc scheduled a MRI which showed my left side artery was totally occluded now and the right side was progressing quickly. Put me on Aggrenox (which made me sick), was on Plavix and aspirin before. He referred me downstate to U of M this time. I was admitted another week there and had all kinds of test again which showed that the left side bypass and EMS was doing well but blood flow was slow and the right side was progessing and needed surgery. They hope by operating on the right side it will also pick up the blood flow for the left side. Met with the neurosurgeon Dr. B. Gregory Thompson at U of M on 11/22 and am scheduled for surgery on 01/09/06. I will be having another STA-MCA Bypass and EDAS this time on the right side. I'm not sure why he says EDAS and not EMS this time on the right side, any input? I'm also wondering if anyone has heard anything about Dr. Thompson and U of M. He assures me that he has treated several MM patients and only does vascular procedures on the brain for the past 13 years. I also worry about my girls inheriting this disease although doc assured me that he has never seen it passed from parent to child but has seen it passed from sibling to sibling. Don't know why but I am more nervous/scared this time than last. Maybe because I know more now than I did last time and I am worried about going under with my blood flow already being slow. Doc assured me that they would keep my blood pressure high to offset the blood flow. Just looking for someone to share with (as all of you are too) and any input would be appreciated. Thanks. Lorie
Lorie Fortune <fortunegirls@core.com>
Boyne City, MI USA
- Friday, November 25, 2005 at 11:12:10 (EST)

My daughter was diagnosed with moya moya when she was 2 years old. She has since had 3 bypass operations.She has had several strokes before and after the operations with one leaving her as a virtual vegetable for 3 months. She is now 6 and apart from a couple of scares in the last 12 months apears to be doing well. the last scan we had showed that the new arteries are starting to have good blood flow now so fingers crossed she should get through this. She does have problems with her fine motor skills caused by the strokes and also has trouble with vision. Our main concern at the moment is she is starting to fall behind in school due to not being able to concentrate and the problem she has trying to read and write. 2 doctors have prescribed the drug Ridalen to help her but we are very reluctant to put her on this drug. We were wondering if there was anybody who's child is having simalar problems who may have some advice for us.
Joel Fossilo <fossilj@newcrest.com.au>
Orange, NSW Australia
- Wednesday, November 23, 2005 at 05:14:30 (EST)

My I say first of all, may God place his hand upon you all, everyone that is affected by this disease and give you a sense of peace. I'm not trying to sound grim, but until they come up with a miracle for this today, everyone of us need to live today like it's the last day that we will spend with our loved one affected by this killer. Every second that ticks by is one that we can never get back, so PLEASE listen to me. Tell them that you love them, tell them what they mean to you. I tell you because I had to tell my wife Sandi while she was in a comma, and later at her grave and at night when the pain feels like it's going to rip my guts out, I tell her everything that I never told her when she was alive. We didn't know that she was dying until she went into the comma and then, well you know. They say hindsight is 20/20, I just want everyone reading this to understand that we are not promised one more day with them, so take care of business today. I know it is uncomfortable, but what is the reality of this disease? I love you all and I'm just trying to help you so you don't make the same mistakes that I made. I've put myself through hell for the last five years because I didn't realize that she would die. But the big picture is that God answered my prayer. I asked him to make her better, and he did. I hope that you find hope in my words. David
david <dze79@sbcglobal.net>
nixa, mo USA
- Tuesday, November 22, 2005 at 22:42:23 (EST)

My wife, Sandi died on April 16, 2001 from MoyaMoya. We(I) have two girls, ages 9&;8. They were 5&;3 at the time she died. She died the day after Easter and exactley a month to the day our oldest turned 5. Our lives will never be the same. From the time Sandi started getting sick until she died, was about 14 months. Her mother also has been diagnosed with the same, they just caught hers in time. Before 2001, they didn't think it was heredatary, but I'm here to tell you that it is. There were four people diagnosed in the U.S. in 2001, my wife made 5. Please respond to this and let me know that we are not alone on this. Now I have to think about my girls getting the same thing when they get older. Sandi was 30 when she went to be with the Lord, and I pray that my girls live to be 100. Thank you for this site. May God place his loving,healing hand on everyone who is affected by this disease. David.
david diebel <dze79@sbcglobal.net>
nixa, mo USA
- Tuesday, November 22, 2005 at 22:39:50 (EST)

My son has been diagnosed with MM. One side 100% blocked, the other 10%. Dr wants to wait until his symptoms get worse before any kind of surgery. Cound anyone tell me their story. I don't feel like wanting until symptoms get worse is a good option. What if they get worse really fast and something happens that nothing can be done? Please give me some feedback so that we can make some decisions. Thank you for any help you can give.
Marguerite <margueriteparker@bellsouth.net>
USA
- Thursday, November 17, 2005 at 10:13:49 (EST)

I was diagnosed with Moya Moya in 1991. I'm now 50. I have had brain surgery four times, but sadly nothing has helped except time. My brain is doing a better job of revascularizing than any of the surgeries. I suffer from very bad headaches every day and have beedn on every pain killer known to man, including Morphine, Percecet, Demerol and now methadone. It seems to be the best so far and my body tollerates it fine. I have suffered from stokes over the years but have been stroke free for about two years. I have been wheel-chair bound but for the past two years I get around fair well. I did an hour on the treadmill today and I walk my dog sevral times a day for a few blocks. Since my initial brain hemhorage in 1991, my short term memory isn't real good. I was a RN, but had to stop after my initial hemhorage. I look forward to hearing from other sufferers.
Debbie Daw <thedaws@rogers.com>
Woodstock, Ont Canada
- Friday, November 11, 2005 at 21:58:23 (EST)

Thank you for posting this site!!!! I was first told that I had moyamoya after I had a stroke in 1996. I felt like I was the only one to have this "tropical drink".At least thats what the name reminded me of. I was only 34 with 2 children at the time.And scared to death of what was going to happen. Well after 10 days in Cleveland Clinic,Ihad the first bypass surgery.And one month later had the second. I often looked for info. on different web sites but yours is the most informative and heartwarming. Thank you so very much for your hard work. A MM survivor!! Kristine
Kristine <krissy_kricket@msn.com>
Transfer, Pa. USA
- Thursday, November 10, 2005 at 23:52:07 (EST)

My son has been diagnosed with MM. He is 28 years old and is seeing a surgeon at Univ of Alabama in Birmingham. Is anyone familiar with Dr. Fisher or Dr. Harrigan? At first they said to wait for surgery until his symptoms got worse, now they are coming more often and will do a blood flow test in the near future and possible surgery after. Any info you could give me would be appreciated. Thank you. margueriteparker@bellsouth.net
Marguerite <margueriteparker@bellsouth.net>
LA USA
- Monday, November 07, 2005 at 20:29:32 (EST)

Hi, my name is Chad and am 45 years old, I have recently been told that I have Moya Moya disease. I have been scheduled to go to St. Louis for testing and to see a specialest that does this. I have had heart attacks, a cataract in the right eye and strokes on both sides of my brain. I go blind in my right eye on occassion and have had fainting spells that the doc told me was panic attacks, anyway that was wrong and am hoping that I can recieve some news from people in the same situation. I'm scared and am feeling that I am not going to last much longer. I'm sorry but I am just trying to figure all of this out. I am not as sharp as I use to be and things confuse me more and more any good or bad news will help me. thanks to all of you.........
Chad Langager <clangager@cox.net>
Edmond, Ok USA
- Monday, November 07, 2005 at 20:24:27 (EST)

has anyone else gone to John Hopkins for moyamoya?
Allyson
Ocean City, MD USA
- Tuesday, November 01, 2005 at 16:03:38 (EST)

I am writing because I want to do whatever I can to find information to help my sister in law who lives in the Toronto area. She suffers from moya moya and is now considering angioplasty. She would dearly love to go to Stanford, but it is too expensive. They do not have the means. If there are any mm sufferers in Canada who can recommend a neurosurgeon, hospital, surgical option, or even general information, please email me and I will pass it along to her. We'd be so grateful for any help whatsoever. She is in her early 30s and has a 4 year old son and the Stanford doctor's opinion is that she needs surgery soon. thank you so much!
Helen Rasmusen <helenrasmusen@yahoo.com>
Bloomington, IN USA
- Tuesday, November 01, 2005 at 14:40:56 (EST)

Queistion: If a child is diagnosed with moyamoya, and has suffered a major stroke, but had the surgery done where they take arteries and use them to try to restore blood flow to the damaged part of the brain, but still suffers from seizures, possibly TIA's, dose it still mean that they may have the blood vessels colapse again, and suffer another stroke? What is the percentage if known, that the child will not ultimatly be taken from us by this?
crissy green <rissypie_71@yahoo.com>
phoenix, az USA
- Tuesday, November 01, 2005 at 14:26:19 (EST)

Hi, I just wan't to let you all know that my prayers are with you all dealing with this. Tommorrow is the "Buddy Walk" for DS, here in Phoenix, and my niece will be walking in the parade 1st time since here stroke 2 years ago. I am so happy and proud. She is doing really well with "the potty", except when she's with me, I think she get's so engrosed in what were doing, and having so much fun, that she forgets to go, even tho I remind her. Which only gets us BOTH in trouble. She has done great since her surgery, I am so happy to have all of you to share with, and for support. Thanks much, Crissy
Crissy <rissypie_71@yahoo.com>
Phoenix, AZ USA
- Saturday, October 29, 2005 at 01:48:49 (EST)

Just wanted to let the Shin's know that we are all praying for you and especially Claire during this time. We have heard that she is doing well and we hope to see you all back in the 'boro soon. The Randy Smith's
SAndy smith <sansmith49@yahoo.com>
Statesboro, GA USA
- Friday, October 28, 2005 at 17:57:58 (EST)

thanks to all who help my daughter Ann she died oct.7th she loved chatting with you all. mom Julie
julie50
CirclePines, mn USA
- Thursday, October 27, 2005 at 17:51:33 (EST)

I wanted to update you on my daughter Cindy. She had her surgery at Cleveland Clinic on October 20th. The surgery seems to have gone well, but she was in an awful lot of pain. I don't know if that's normal. Her incision is much bigger than the one she had done on the left side three years ago. Please keep her in your prayers as she recovers. Thank you.
Barb Miller <brm@lceci.com>
Somerset, PA USA
- Thursday, October 27, 2005 at 07:38:55 (EST)

There have been many posts in the guestbook about Claire and the Shin family this last week, which is absolutely wonderful! Just so all of their friends and family know, there is currently a thread on the message board dedicated to their progress located at: http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=localmeet;action=display;num=1129991214 Please feel free to create a profile on the mesage board to respond. :) DJ
DJ
Wichita, KS USA
- Wednesday, October 26, 2005 at 23:49:46 (EST)

I spoke with Claire's dad, Stanley Shin this afternoon and she has come through her surgery wonderfully. According to dad, Claire is talking and talking and talking. For all so blessed to know this wonderful girl, you realize that is just what we wanted to hear. Claire, the Everidge family sends their love.
Joey Everidge / St. Jude Medical <jeveridge@wavelengthmail.com>
Beaufort, SC USA
- Wednesday, October 26, 2005 at 17:44:32 (EST)

I was just recently informed of a friend's adult daughter being diagnosed with moyamoya and decided to research the disease not ever coming across it before. Thank you for providing this website with medical information for our education as well as supplying solutions and hope for those who have to deal with this disease on a very real and personal daily basis.
Marlene Bradley <purplemaclady@gmail.com>
Schenectady , NY USA
- Wednesday, October 26, 2005 at 08:53:17 (EST)

trying to find out how Claire, from Statesboro is doing???
H Tapley <htapley@nctv.com>
Statesboro, Ga USA
- Tuesday, October 25, 2005 at 19:40:02 (EST)

Had my surgery done at Brighan and Women's in Boston by Dr. Phillip Stieg, who is now at a New York Hospital. My operation was in 1999 and so far have not had any recurring incidents.
Wayne Ursal <wursal@hawaii.com>
Waipahu , HI USA
- Monday, October 24, 2005 at 20:04:44 (EST)

Hi, thanks for you site D.J., and all others that have written. My niece has DS, and has a stroke that totally destroyed the right side of her body, she was soon diagnosed with MoyaMoya, thru PT she can walk now, raise her left hand, and sometimes relax it enough to try to use him - "we call him 'Lefty" - to incourage her to use him, she is 6 now. She had the surgey, went great, she's on the asprin deal and takes tegretol for seizures. I am so proud, she lost the ability to know when she had to use "the potty", so she had to wear pullups. Several days ago we tried it, and put on "chonies" (underpants), and she has been accident free. The Dr.'s said that her stroke had effected that part of her brian and she probably would never be potty trained again. She has proven them wrong on so many counts. I love her more than anything, now I have hope that this disease will not take her from us.
Crissy Green <rissypie_71@yahoo.com>
phoenix, az USA
- Wednesday, October 19, 2005 at 17:24:33 (EST)

looking for anyone in my area that is also going to John Hopkins Hospital with MoyaMoya ?
Allyson
Ocean City, MD USA
- Tuesday, October 18, 2005 at 14:39:11 (EST)

Hello Friends, My brother was suffering from Moya Moya disesase for the last 3 and half years.He was at school when the Doctors detected the disease. And he undergone surgery in june 2003 and nov'2003 in Apollo Hospital at Chennai. Now he is 15 years of age and is going to school. But before the surgery due to strokes his right side is weakened and he cannot move his right hand.Moreover we have noticed that he is unable to recall and concentrate on his studies.And of late he consumes medicines estimated around Rs.4000.00 (Indian Money) a month. Now I wish to know as an elder brother the following queries: 1. can he get back the power of his right side. 2. Will he be able to study. 3. will he have to take medicines through out his life . Since my father has retired from his job and the whole responsibility is on my shoulder. We are a middle class background family from Kolkata in West Bengal( India) 4.Will he ba able to lead a normal life. Anyone who can clarify my doubts will be highly appreciated.
Prasenjit Saha <prasenjits@g4india.com>
kolkata, WB INDIA
- Sunday, October 16, 2005 at 05:42:54 (EST)

thank you for your site, one of our friends daughter has just been diagnosed in Melbourne, Australia. Thankyou for being so brave to share your experience - we are feeling less stressed about her now. Many thanks and good luck in your life!!
Judy and Cecelia <cbroo37@eq.edu.au>
- Friday, October 14, 2005 at 04:36:19 (EST)

Hi. I was diagnosed with moyamoya a few weeks ago, and had my first surgery on the right side of my brain about 3 weeks ago. The question I have is about how others felt right after you wake up in the recovery room. I was so sick I was dry heaving for a day and a half. I've never been so sick in my life. I got better fast after the initial horrible nausia. But I'm afraid now of the next surgery that should be in another few weeks. I know it's just nausea, but it made me feel like I could never get through another such surgery. Anyone else go though this? Or does most people get out of surgery will little or no problems? Please email me with any help. Thank you.
Rhonda Susco <rsusco@yahoo.com>
Middletown, oh USA
- Wednesday, October 12, 2005 at 20:21:41 (EST)

I just wanted to let everyone know how AWESOME our moyamoya renuion 2005 was and hope 2006 in Orlando will have an even bigger turn-out !!!!!!!!!!!
Elaine <elainecalvert@aol.com>
Westerville, Ohio USA
- Thursday, October 06, 2005 at 19:54:19 (EST)

mom daughter hospital with acute bleed-moya Iam scared not waking up
julie50
circle pines, mn USA
- Thursday, October 06, 2005 at 06:49:56 (EST)

My best friend has just been diagnosised with moya moya. She is said to not be a good canidate for surgery and lets wait and see how she heals on her own. She is a fighter but without the right help this is one battle I don't see her finishing. Anyone who reads this message please pray for my friend to get the proper medical treatment and recover. She has such a beautiful soul our world would be a much worst place if she was no lomger in it. Thanks jlp
Jackie Perkins <dragoness_702@hotmail.com>
Las Vegas, NV USA
- Wednesday, October 05, 2005 at 23:42:34 (EST)

My daughter Cindy has MM. She had bypass surgery on the left side three years ago and did very well. Her doctor was Harold Yonas at Presbyterian Hospital in Pittsburgh. He has since moved to New Mexico. She is scheduled for the second surgery on October 27th at Cleveland Clinic by Dr. Rasmussen. I wish she could afford to go to NM and have it because she had such faith in her doctor. Does anyone know the real statistics after bypass surgery, such as how many people have strokes, what the usual recovery period is, etc., and of course the worst scenario that don't survive the surgery? I am so scared. Please pray for us.
Barb Miller
Somerset, PA USA
- Friday, September 30, 2005 at 13:54:45 (EST)

My name is Jeff Yu and my wife had a stroke ( her veins was ruptured)last Friday Morning, 9/23/05 at 10:30am. She was taken to USC Medical Center in Los Angeles, CA. At first, she was in coma for couple of hours and then she became stablized by 8:00 PM.. She had Angiogram test and she was diagnose with Arteriorvenous Malformations(AVM) Now she is in ICU but she is conscious with pains time to time. She sleeps a lot and she would wake up for few minutes and goes back to sleep. Today, when I talked to her Doctor, he strongly believes that my wife has a Moyamoya. Her Doctor sugest that they will have STA by-pass surgery sometime next week. Since it is a rare disease that I don't know what to do. I am so worried. I was wondering if anybody can give an advise for my wife's case. I noticed MM is rare disease that ther is no certain treatment for it. She is 36 years old. Is MM 100% curable at her age? What if she has another stroke? Will that cause brain damage? Right now, she is breathing through tube so I don't know if she can speak. Please help me..
Jeff Yu <jeffreyyu@yahoo.com>
Los Angeles, CA USA
- Thursday, September 29, 2005 at 21:58:35 (EST)

Dr.Tamargo John Hopkins Baltimore Md. Great!!!!
Allyson
Ocean City, Md USA
- Thursday, September 29, 2005 at 17:01:33 (EST)

just thought id say i was diagnosed with moya moya bout 3 years ago nd goin 4 my first op in december. its nice to know there is ppl who care!
Bethan <myheartbleeds4you@hotmail.co.uk>
england
- Thursday, September 22, 2005 at 15:46:43 (EST)

I heard of this website from a lady before it was complete.
Dana Atma <DANAATMA@AOL.COM>
Charlotte, NC USA
- Thursday, September 22, 2005 at 14:47:15 (EST)

Hi! I am Cass, the newest member of the website. This is the first I have had time to post, as we only found out on Aug.19 that our daughter Kate had Moyamoya. We were blessed to have a doctor without ego in Oklahoma run an MRI, MRA and lumbar puncture and tell us "I do not know what this is, but I know it is very serious and you need to get a second opinion in Dallas immediately" We then found a neurologist in Dallas and her colleauge who thought it was an "extremely rare disease called Moyamoya" Lucky for us, a dear neighbor found DJ's website at ll:30pm on 8/19. From there we found Dr. Steinburg (FABULOUS!) and Teresa Bell-Stephens {an Angel!) We left Dallas on 8/31, Kate had her first surgery 9/7, her second one 9/13 and left the hospital yesterday, 9/10. What a whirlwind month!! We have had SO much love and support from Jill, Tara and Campbell, as well as DJ and the rest of the "moyamoya.com" family. Thanks and God bless you all. I only hope we can give back as much as we have received. Love, Cass PS Like so many of you, Kate was misdianosed for 2-3 years.
Cass <mamacass11@msn.com>
Dallas, TX USA
- Thursday, September 22, 2005 at 05:26:02 (EST)

when I first got this deasice I was 6 almost 7 I'v had 3 majore brain surjores three angeiograms 5 MRIs and 3 mras 6 cat scans and several other test and both sides have gone wrong now I'm 16 I'v been through everything that this deases can put you through.
charles russell <cno@yahoo.com>
winters, Ca USA
Tuesday, September 13, 2005 at 12:57:42 (EST)

My sister, Erika, was recently diagnoised with Moya Moya. She is 27 years old and is a Down Sydrome Diabetic. She is the love of our whole family and we don't know how to deal with this. She's been in the hospital for a week and we don't have any insurance. We could use some more emotional support from people who are or have gone through this. Thank you for this support group. Sincerely, Jacob Nichols
Jacob Nichols <jacob7397@yahoo.com>
Gladstone, OR USA
Monday, September 12, 2005 at 14:36:09 (EST)

Aloha... I just wanted to let anyone from the Hawaiian Islands know that I too have been diagnosed with MM and recently had a double bypass in May of this year. I am so glad that you've found this site! It has provided me a wealth of information as well as a ton of support. I'm still learning more MM and how it has affected others just like me... Last but not least, I do want to let you know that I, along with the help of other MM survivors I've recently met here in Hawaii, am organizing a local support group..."Hawaii Moyamoya Ohana". Please feel free to email me if you're interested. Take care and once again, welcome to this awesome site! Take care, Shan (islandmoyamoya@yahoo.com)
Shan <islandmoyamoya@yahoo.com>
Honolulu, HI USA
Saturday, September 10, 2005 at 00:50:12 (EST)

jennifer here i've posted that i had surgery on august 18th i'm doing fine i had a seizure after surgery lasted only 45 seconds now on keppra was in surgery 15 hours wasin icu 3 days then wen home. very successful
jennifer
bakersfield, ca USA
Friday, September 09, 2005 at 22:14:18 (EST)

My best friend in the world (30 yrs old) has Moya Moya. She is going to Stanford University next week for the bypass surgery with Dr. Steinberg. Needless to say we are all very scared and worried. We need all the prayers we can get. Thank you.
sheri scholl <se_stockton@yahoo.com>
woodbridge, va USA
Thursday, September 08, 2005 at 20:00:24 (EST)

I have been diagnosed with MoyaMoya after giving birth too my second child. I was diagnosed after having 5 mini strokes, which the 5th one lasted 30 hrs. Mid Maine Medical center sent me too Mass. General hospital where i spent from July 8, 2005 too July 14,2005. I turned 35 on July 16th. I was seen by a Dr. Christopher Ogilvy who had asked if I have ever heard of MoyaMoya....I told him No...after all the tests were run and a Lumbar puncture,MRI's Mra's Ct scans...they had diagnosed me with this disease...I was far from home..away from my oldest son(who was turning 12 in august)and my newborn son who was born may 5th of this year and being told that I had this rare disease. On September 12 and 13th I return too Boston (Mass General) for a PET Scan and an appt at the Stroke clinic..If anyone has any info on MoyaMoya please let me know. Thank you!
Laura Stevens <hell_bytch_1@yahoo.com>
Waterville, ME USA
Wednesday, September 07, 2005 at 16:55:27 (EST)

I am pleased to have come across your webpage. I recently lost my sister on 06.08.05 due to a large intracerebral haemorrage stroke and she had suffered from sickle disease through her life up to the age of 14years. I spoke to the specialist nurse who informed me about moya moya and reading other peoples stories I wonder why my sister never had any surgery, if she had been operated she could still be here. We are still in shock because we never thought by now my sister wouldnot be here. I am now very interested to learn more about the disease and hope one day the will be cure.
Josephine <missyc89@yahoo.com>
London, USA
Wednesday, September 07, 2005 at 11:41:26 (EST)

I like this site, but you need more pics!
Lili <lili_nospam@yahoo.com>
USA
Wednesday, September 07, 2005 at 04:24:39 (EST)

My names Michael and I had my bypass surgery on November 17 04. I'm 18 yrs old and doing way better since i had surgery. Thanks to a brilliant Dr. Gary Steinberg. The man who saved my life. After surgery I aoutomatically felt better in the since I wasn't tired all the time and not having painful migrain headaches all the time. Doing better then ever though thanks to the surgery.
mneuro <mneuro@aol.com>
stockton, Ca USA
Sunday, September 04, 2005 at 01:37:18 (EST)

My daughter has moyamoya and she did have her 1st surgery done in July 18, 2005 in Korea. Now she is in Hawaii, but I do not know where to go to see a specialist for this case. Please, Help???NICE LOOKING SITE ONYEOLU
ONYEOLU NWAGUY <MAGA@YAHOO.COM>
LOME, LO USA
Saturday, September 03, 2005 at 13:42:23 (EST)

I had my first cerebral bypass surgery Jan. 1994. My secord cerebral bypass was May 1994. My neurosugeon is Dr. Van Der Veer in Charlotte, NC. This type of bypass surgery involved taking veins from my legs above my ankle to just below my knee for both surgeries. My neurologist's name is Dr. Steven Putman, he also works in Charlotte, NC. Dr Putman referred my Dr. Van Der Veer. I wrote my first web site forum in 1999. At this time there was only one web site for others that have Moya Moya. This was the Harvard web site. I would refer anyone that lives in the Charlotte, NC area to Dr. Putman, he has treated over 13 others that have Moya Moya. Dr Van Der Veer is an great surgeon. He was an intern/pre med. in Cleveland, OH. I have had no complications and or strokes since my first cerebral bypass surgery. I am not sure how to post these doctors addresses and phone numbers. If i did, I would. I am a 44 years old female.
Dana Atma <DANAATMA@AOL.COM>
Charlotte, NC USA
Thursday, September 01, 2005 at 15:15:58 (EST)

My daughter has moyamoya and she did have her 1st surgery done in July 18, 2005 in Korea. Now she is in Hawaii, but I do not know where to go to see a specialist for this case. Please, Help???
Joseph Kim <iesu316@yahoo.com>
Honolulu, HI USA
Wednesday, August 31, 2005 at 17:24:24 (EST)

I was 36 when I was diagonosed with Moya Moya. It all started with losing consciousness while taking a shower one Saturday morning in March 1999. When I woke up, I found myself lying on the floor with water still coming out of the shower head. Before this, I never had any fainting spell. I started seeing a neurologist. For six months, he could not pinpoint what was really wrong with me. Finally, in September 1999, I started to have weakness and numbness in my left arm/hand. He suspected that there could be a problem with blood flow to my brain. He immediately ordered a MRA (Magnetic Resonance Angiography)and TCD (Transcranial Doppler), and the result suspects Moya Moya. And it was confirmed with a cerebral angiogram a couple days later. I was very lucky that I worked in New York Presbyterian Hospital, a major teaching hospital, which had seen more than its share of Moya Moya patients. Its Neurosurgery/Neurology Dept was and still is rated #3 in the US. Dr. Connelly performed bilateral EDAS for me shortly after my angio. Today, my hospital has multiple vascular neurosurgeons who have been performing surgery for Moya Moya patients for years. Today, I am still working full time and normally do not have any TIA's unless is brought on by myself. What I meant was certain activities bring up TIA's for me. For instance, I lost consciousness for the second time last year while I was hiking a mountain in Alaska. The combination of high altitude and strenuous labor may have caused it. Also, sometimes I like to support my head with my index finger by pressed on the artery between my ear and my cheekbone. That always brings up numbness/weakness of my arm/hand on the opposite side. I think this cuts off the blood flow of the artery that was used in my EDAS procedure to suppliment blood flow to the frontal lobe of my brain. Otherwise, I lead a life that is no different from pre-Moya Moya. I wish all of you good health and do email me if I can provide any help.
Szu-Ping Di <diszupi@nyp.org>
New York, NY USA
Sunday, August 28, 2005 at 22:55:03 (EST)

I was diagnosed with Moya Moya in 1999 and had bilateral EDAS surgeries in the same year. I am still working full time and doing well currently.
Szu-Ping Di <diszupi@nyp.org>
New York, NY USA
Sunday, August 28, 2005 at 17:03:49 (EST)

i HAD A STROKE about 7yrs ago i still have mini strokes.i am very depressed today.i have no idea why ,i was 25 when i started having problems i had brain surgery in 1998 and i had a stroke right after surgery now i am 34yrs old.i would love to talk to someone that has the samedisorder
marlene smith <marsms@localnet.com>
palmyra, ny USA
Sunday, August 28, 2005 at 11:47:16 (EST)

I was diagnosed with Moya Moya in March of 2005, I went to the emergency room complaining of numbess in my fingers and feet and tongue. They sent me home with an asthma pump. I don't even have asthma. ANYWAY, A month later I was on the highway coming from my home town when my left side went weak and I could barely get off the highway before a truck ram me in the back. I thought I was having a heart attack. I could not speak nor move for about 12 mins. My 10month old daughter was crying in the back seat and I was helpless. When I regained some of my strengh back,I mangage to drive to the next exit and call my boyfriend and and my best friend call the ampbulance. When I got to the hospital the find out I had a Stroke. I am 28 years old amazed what they are telling me. I strayed in the hospital for 23 day getting all kind of test ran on me. My neurologist referred me a neurosurgeon which diagonsed me with moya Moya. The only problem is the can't fix it because it is in a hard to reach place in my head. I just left my neruologist and his heart goes out to me because he does not no what to do. I have the best team of doctors in this area. Just pray for me to at least see my daughter grow up.
Gennie Scales <genvsc@hotmail.com>
Charlotte, NC USA
Monday, August 22, 2005 at 10:58:31 (EST)

Iam writing to say my sister Diane was diagnosed with moya moya 13 yrs.ago.She went through so much she could not walk talk or even feed her self. She had surgery and is doing much better. She has drop foot in one leg,and is working parttime as a hairdresser. She is driving. I thank God she is doing so good,she is a fighter,and was sure not going to let any thing step in her way.
Debbie <DVCAPE@PRODIGY.NET>
ENFIELD, CT USA
Friday, August 19, 2005 at 17:34:42 (EST)

I was diagnosed with mm in march05 Iv'e had 2 strokes so far left me weak on my left side had therapy and know i am able to walk and little by little able to use my left arm overall i feel fine i am havin my first surgery Thursday August 18 th at UCLA HOSPITAL, in los angeles ca,Dr neil martin will perform the surgery has anyone heard of him?
JENNIFER ALBIAR <ALBIARZ@AOL.COM>
BAKERSFIELD, CA USA
Wednesday, August 17, 2005 at 10:51:57 (EST)

Greetings! I was diagnosed August 11,2005 with MoyaMoya. I am still reeling in shock, since the whole mess actually started in June! It all started with a horrible migraine and a extremely tight shoulder and neck on my right side. The migraine seemed to come and go, and honestly I don't even remember complaining of it, just the shoulder and neck! I saw my PCP on June 30, and she thought it was a pinched nerve, so she gave me some muscle relaxants and anti-nausea medications and told me to go to the ER over the holiday weekend if it got any worse. Which of course it did! NOTHING helped. Then on July 3, my poor husband fell and wrenched his back to the point that he couldn't move, so now the person that was taking care of me was out of commission (good thing we live with his mom and his younger brother, as they were fantastic about helping me and him!) But this leads to the next problem in that I decided I just couldn't take any more of the pain on July 5, and needed to go to the hospital. My stepmom and my dad took me to the ER, then had to leave me on my own as they had to be up early the next morning. So as I went through the ER, it was all very confusing and blurry (and not just because my eyes by this time had become pretty much useless). *Never go to the ER without someone to speak for you and make sure that they are doing what needs to be done!* About the only good thing the ER did was give me drugs...valium and diloted (not sure of the spelling of this)! I ended up doing a CT scan that evening, then they decided they wanted to admit me in order to do another test the next day, the Angiogram. The next morning (I think?? Everything from here on out is pieced together, as I was so far out of it I barely recognized my husband when he was able to make a short visit!), I was taken in a wheelchair down for the other test. They had told me that they had changed their minds and I was going to do an MRI, to which I didn't respond, as long as they made the pain go away! So in I go into the very constrictive machine, WiThOuT any ear protection, with a migraine headache and being mildly claustrophobic(which no one asked me about!)Needless to say, I got out of that very long and loud test and back into the chair only to scramble out and be sick all over. Then back up to my room for whatever amount of time it took them to figure it out. Then some guy (doctor) comes into my room, turned the lights on overhead (and you migraine suffers will understand the pain!), and proceeds to tell me that I have Cluster Migraine, and that "By the way, we did find a vein at the base of your skull that is closed off, but it looks like it isn't doing anything bad, and has been that way probably since childhood." Then he left without explaining any of it! So, I was released the next day (I asked to stay another night...the drugs were wonderful, and I didn't want to have the pain back), and lo and behold, not one person explained the situation to either me or my husband in such a way that we could understand it! Even the medication they gave me we figured out by reading the discharge papers! (So not going back to that hospital again!!) So now we proceed like I have a cluster migraine that is causing my near blindness, raging headaches, and now my numbness in my right hand and arm. They had me on Percocet (which I hated-I hate how it makes me feel) and Topomax to try and get rid of the headache. Then a week after I am realeased, I go to see my PCP again, and am actually worse than she had seen me on June 30. She increased my dosage of Topomax to 50mg a day, and referred me to a Neurologist. And on August 11, I saw the Neurologist my PCP most preferred (they are awfully difficult to get into around here, as most are no longer accepting Insurance), and the Neurologist did her exam and went over my history with me, then she read the reports and the films (which were late getting there due to my leaving them at home!), and once she saw the AMRI (AngioMRI), she saw the vein they told me was "no big deal" right way and about had a cow! She looked again at the hospital records and noticed that not ONCE did they have me see a Neurologist while I was there...they were all Neurosurgeons! She advised me that if a Neurologist had seen the information, they would have been able to tell me I had MoyaMoya right away! (So I wasted how much time thinking this would all just "go away"?) Not to mention that she was the only person to realize that I was treading a potential drug allergic reaction to the Topomax, as it is "cross-related?" to Sulfa based drugs, of which I am deathly allergic...and it says it EVERYWHERE on all my medical records...and I think I could be close to death and still manage to tell rescue peoples that I am allergic to the stuff! She immediately ordered another MRI with and without the dye, (which I did today), and referred me to some stroke specialists that were more familiar with MM than she was. So now here I sit, waiting to meet with the stroke guys on 08/25 in order to learn what I can expect from my head next! Since the name for this disease is so...interesting?...I keep telling people that I have a tropical drink in my head, it seems to work at establishing the right kind of balance between "this is serious stuff" and "it's not gonna get me down!" At least we have a disease where 1) we're not part of a ton of others who have the same thing (we stand out!) and 2)the name of the darn thing is actually easy to pronounce! So, that's my story, 9 days short of my 27th birthday and I get the wonderful gift of a rare disease! :) I am so glad to see this site though, and hope to be in contact with others that are also dealing with this bug-a-boo! Take care and Bless Be!
Jenn Prescott <Skybyrde2002@yahoo.com>
Centennial, CO USA
Monday, August 15, 2005 at 19:30:35 (EST)

I'M 31 YEARS OLD AND I WAS DIAGNOIS WITH MOYAMOYA. IT ALL STARTED AFTER I GAVE BIRTH WITH MY SECOND CHILD I HAD HER ON DECEMBER 21 2004. ON JANUARY,4 2005 I HAD MY FIRST TIA I WAS HOME ALONE WITH MY TWO DAUGHTERS, AND MY LEFT ARM GOT NUMB, AND MY FACE DROOPED ON THE LEFT SIDE. MY SPEECH GOT REAL SLURRED. I STARTED HAVING REAL BAD HEADACHES I WENT TO THE ER THEY GAVE ME A SHOT, FOR MY BLOOD PRESSURE, BECAUSE IT WAS REAL HIGH. AFTER 2 HOURS THEY SENT ME HOME. THE NEXT DAY I WAS SICK I WENT TO MY FAMILY DOCTOR HE PUT ME IN THE HOSPITAL, HE DID A MRI I STAYED 5 DAYS IN THE HOSPITAL. WHEN I WENT HOME I STILL WAS HAVING TIAS. I WENT TO THE ER AGAIN THEY PUT ME THE HOSPITAL AGAIN I STAYED 3 DAYS. MY DOCTOR REQUESTED THAT I GO SEE A NEUROLOGIST. I WENT TO THE NEUROLOGIST THEY TOOK A MRI,AND A MRA AND THEY FOUND OUT THA I HAD BLOCK ARTERIES ON THE RIGHT SIDE OF MY BRAIN, SO THE DOCTOR AT THE NEUROLOGIST REQUESTED THAT I GO TO A UNIVERSITY, SO I CHOOSE DUKE UNIVERSITY IN NORTH CAROLINA. I CALLED AND MADE A APPOINTMENT. I WENT ON JULY THE 12 THE DOCTOR ADMITTED ME IN FOR TESTES. I STAYED THERE FOR 8 DAYS I WENT HOME FOR 5 DAYS. SURGERY WAS SCHEDULED FOR JULY 27. I WENT BACK ON THE 26 TO DISCUSS THE SURGERY WITH THE DOCTOR. HE TOLD ME THAT HE WAS GONNA REMOVE A ARTERY BY MY RIGHT EAR, AND PLACE IT ON TOP OF MY SKULL. HE TOLD ME THAT IT WAS POSSILITY THAT I WOULD HAVE A STOKE AFTER THE SURGERY. I HAD THE SURGERY THE NEXT DAY I HAD A STROKE RIGHT AFTER THE SURGERY IN RECOVERY MY WHOLE LEFT SIDE WOULD NOT MOVE THEY GAVE ME A LOT OF MEDS TO MAKE MY LEFT SIDE TO MOVE. I STAYED IN ICU FOR THREE DAYS. I WENT HOME THAT SUNDAY WHICH WAS THE JULY 31ST. I WAS STILL UNABLE TO MOVE MY LEFT HAND, BUT MY LEG WAS OK.
VICTORIA DUKES <victoria_dukes@yahoo.com>
MANNING, SC USA
Sunday, August 14, 2005 at 18:40:23 (EST)

I am a 46 year old Native American. I was diagnosed with moya-moya on August 9, 2005. My story began in May 2005 after I experienced a TIA. The TIA occured out of the blue, my first episode occured at a mall in San Diego. Thankfully, the episode passed after about 10 minutes (I drove home), I had another episode about 4 pm after dropping my daughter off at work my right arm went numb during this episode). I drove all the was home again! When I got home, I called 911 because the right-side of my face was drooping. I was rushed to the ER & was told I had a TIA & to follow-up with my doctor. He immediately ordered a MRI. On my way home from the MRI, I had yet another episode. My husband drove me to the ER, they were able to get the results of the MRI. The MRI showed Multiple Sclerosis. My doctor transferred me to a Neurologist. Since I did not display the "clinical signs" of MS, the dr. ordered a MRA, this test showed "cerebral vasculitis" (spinal tap also came back normal). The neurologist ordered a cerebral angiogram to officially diagnose vasculitis vs moya-moya. The angiogram came back yesterday - diagnosis: Moya-moya. My dr. said we don't know what causes it, there's no cure. He recommended that I get back on 325mg of aspirin & cholesterol medication. I was told I was the 5th adult in the USA to be diagnosed (source: Medical Journal) obviously not a reliable source. I'm so thankful that I am not alone. I've forwarded the website to my neurologist. I'm hopefully going to be able to get a second opinion from Dr. Steinberg from Sanford Stroke Center. God bless...
Lee
oceanside, ca USA
Wednesday, August 10, 2005 at 18:36:37 (EST)

My daughter has moya moya since 2 years old, now she is almost 4 years old. She has 2 by pass and 5 strou. My english is not very well but I would like to hear about the other persons with this deaseas.
MARIA ANAYA <gitana_13@hotmail.com>
MIAMI, FL USA
Friday, August 05, 2005 at 15:28:14 (EST)

I am 27 years old. My Mom has moya moya. One morning about 13 years ago I woke up for school and my Mom fell out of bed. She tried to stand up and her legs gave out on her. She had 7 mini strokes all at once and they had to operate on her brain. If they didn't operate she would've had 1 major stroke that would've left her paralyzed for good. Now she walks with a limp because her toes curl under her foot and she walks on her toes. I have never been more scared then I was the day she went in for surgery. I thought I was going to lose my mommy. She had to learn how to do everything all over again. Talk, walk, eat even write. She is doing much better now. She works part time as a hairdresser and seems to be very happy. I am so proud of her. She is my hero and I love her so very much. She is an inspiration to us all. She makes me believe that anything is possible and anyone can overcome any obstacle thrown at them. She really is the BEST MOM EVER!!!!!!
Linnea Schook <schook69@yahoo.com>
Oregon, MO USA
Tuesday, August 02, 2005 at 00:28:53 (EST)

my story begins back in May of 2004. i was at work one morning and was experiencing some numbness in my left hand in which my Dr. thought was a pinched nerve. My assistant looked at me very strangely and said that the left corner of my mouth was drooping. I went straight to the ER. they did CTScans, kept me overnight. they informed me that I had what was called a TIA and placed me on asprin and plavix.i was in and out of the hospital almost weekly. They then sent me to another local hospital, which was supposidly better equipped for stroke patients.thankfully they did an MRI and one of thje local neurologists knew a Dr. in the Detroit Area who did the corrective surgery Dr. Richard Fessler at HarperHospital in Detroit. I was taken in an ambulance to consult with Dr. Fessler to see if he would take my case. on Oct. 4,2004 I had the EDMS procedure done. Although I did have a couple of strokes during surgery,I have had no other mini strokes or TI/a's.Other than not being able to use my left hand,Iseem to still have a lot of anxiety of the future and the unknowns ahead.I do wake up greatful each day and think yes!God!You have given me another day!! fessler ; they there was a great deal of bloodwork and consultation d nerve
kathy a <kathy5619@gmail.com>
Lansing, MI USA
Monday, August 01, 2005 at 17:58:55 (EST)

My name is Amanda Jaunarajs (yawn-a-rice)I'm 26 years old and I was diagnosed with MoyaMoya in June of 2004. I had surgery on both the right and left side less than a week after my diagnosis, performed by Dr.Steinberg. The fact that they made the diagnosis was a miracle in itself. I was thirteen weeks pregnant when I was at work, and out of the blue had what I now know to be a TIA. This happened to me once before, about 6 years ago in college. They gave me a cat scan and a spinal tap but found nothing so they attributed it to my horrible migraine. So when it happened again (along with a migraine)I figured it was the same thing. Because I was so concerned as to whether or not my baby was affected, I had my parents take me to the hospital while my husband was away. Because I was pregnant, they couldn't do a cat scan so they did an MRI and that's where everything changed. They saw bleeding on my brain and had to do an MRA for a more in depth look. The neuro doctor there that night had seen MM only ONCE before, so he was able to make the diagnosis! While in the hospital I kept having one TIA after another. My mother-in-law starting doing some research on-line and that's when she found Dr.Steinberg. She contacted him directly and within a few days I was in California awaiting surgery. It all happened so fast, I think I just went in to shock mode. My first and only concern at that point was to save my baby. I didn't think for one second about how I was going to come out of it, I just prayed that our baby would be okay. So I had the first surgery, waited two weeks, and had the second. And thank God for my guardian angels Dr.Steinberg and his staff, because both our baby and I are doing great!!!! Brady Lee, was born on Dec.20th, a healthy 7lb 13oz, beautiful baby boy...no problems what-so-ever! He truely is our miracle baby! I still have TIA's on occasion but my understanding is that that's normal. Reading about all of you and hearing your stories has really given me a sense of peace in knowing that we don't have to go through this alone. Because of its rarity, I felt very isolated at first, but now that I know you're all out there going through some of the same things and having some of the same experiences, I don't feel so alone. God Bless :) ps..I'd love to share pictures of Brady, he is the love of my life, (along with my husband) And I'd love to hear from you at any time, feel free to email me!!
Amanda <Jaunarajs07@hotmail.com>
Portage, MI USA
Saturday, July 30, 2005 at 21:27:25 (EST)

I have Moya MOYA Syndrom and have had it since last year the anniversary of my first surgery is in August of 2005
Chana <tie_my_shoe113@yahoo.com>
pa USA
Friday, July 29, 2005 at 19:43:54 (EST)

Just diagnosed with MM a little over a month ago. Scheduled for surgery mid August. Does anyone know anthing about Dr. Charbel from UIC? Please help with any info. Bad or good. Thanks, Cindy
Cindy <Chill52003@yahoo.ocm>
Valparaiso, In USA
Thursday, July 28, 2005 at 22:55:09 (EDT)

My sister was daignosted with moya moya when she was 3years old, however, I believe she was born with it. In August of 2002 my sister started to get high fevers which resulted in seizurs. Angelica (my sister) was hospitalized and during that time she had 2 strokes and 2 seizures. It was then that the doctors diagnosed the moya moya through the SPECT and MRI tests. My family decided to go with the STA-MCA operation. The operation was succsessful in "repairing" her blood vessels, unfortunately Angelica suffured a major stroke almost directly after the sugery. The stroke affected the whole left side of her body, preventing her from speaking and being able to walk properly. Today is July 25,2005 and Angelica continues to progress by using sign language and acting like a typical 6 year old! However, she has yet to speak and has problems with her Achilles Tendon (still preventing her from being able to walk properly). Hopefully these damages from the stroke are not irreprable. Angelica is an inspiration to me because of the obstacles she's overcome and the beautiful person she is.
NICOLE <santana501@optonline.net>
new york, ny USA
Tuesday, July 26, 2005 at 22:28:24 (EDT)

My mom had a massive stroke and a massive hemorrage in the brain due to a rupture anevrism... and with the scan they diagnose the moya moya desease... she had the surgery 3 weeks ago... still waiting to see what all that has left her with... Thanks...
Andrée <lemay_andree@hotmail.com>
st-jean, quebec canada
Tuesday, July 26, 2005 at 19:50:19 (EDT)

Here's our story - my husband began having TIA's in December 2004. He was diagnosed with middle cerebral blockage - 98%. We were recommend to have angioplasty - balloon surgery like they do in the heart, but this is in the brain. We found the dr. that pioneered the procedured and he said he could do the procedure and it was necessary or he would eventually stroke - sooner than later. Procedure went well but he didn't open the artery as far as he wanted (you can only stretch an artery so far!) so recommended we come back in 2-3 months for followup. The artery had collapsed again and he found progression in the M1 and M2 areas of the middle cerebral. Did the procedure again and opened the both areas further. He has had every test in the book to rule out other diseases that may be causing the narrowing - he has no risk factors - he is middle 40's, white male, no history of high blood pressure, high cholesterol, etc. The doctors are baffled by the cause. His neuroradiologist has said that it could be the beginnings of moyamoya. We had a second opinion by Dr. Steinberg and they think it is probably a variant of MM and recommend tests then probably surgery. Has anyone ever had the angioplasty done prior to bypass surgery?? He is scheduled to go back in early Sept. for a followup on the angioplasty - they will do a CT this time then angio if necessary. We are trying to decide to go back for the followup or just go to Steinberg - both are a plane trip away......any thoughts???
Shadow
USA
Tuesday, July 26, 2005 at 16:46:19 (EDT)

I am a 41 year old female that was diagnosed with moyamoya this past May. This afternoon I met with Dr. Charbel a neurosurgeon from the University of Illinois Chicago hospital who has told me there is no cure only surgery. He has scheduled me for a memory test and one last MRI before surgery. Surgery will be within 2 weeks as they do not need the results from these tests before performing the surgery. I will be going in for 2 surgeries 1 on both sides. The left side first as those symptoms are more predominant. I am a married mother of 3 whose family is incredibly supportive. I am told the surgery will take approximately 3 to 4 hours and will be hospitalized for 3-4 days. It's like going from ICU to home.I am getting scared but do not want to show my emotion as to not scare my family. I know there should be more questions to ask the surgeon but just drew a blank after hearing the only option was surgery. I ask you all how do you all say you have moya moya if you have had surgery? Does it not go away after surgery or are you just always diagnosed with the disease?Why do you all say I have moya moya but yet have had surgery? I hope I have asked this right as my words do not come right very often now!
Cindy Hill <Chill52003@yahoo.com>
Valparaiso, In USA
Monday, July 25, 2005 at 23:11:07 (EDT)

Hi, I have visited your site about a year ago after my dad had been diagnosed with moya moya and i am not sure about his outcome. I read where the only way to really get rid of it is surgery, but the doctors refuse to do the surgery on my dad. I'm not really sure how to handle cause my family on his side seem to be the only ones to care. I really don't have anyone to really talk to about this cause my mom and my sister don't really care, and i do. Then again he is my father. Your site has been helpful to better understand. Thank you.
Shannon <crazedcat_02@hotmail.com>
Golden Valley, AZ USA
Monday, July 25, 2005 at 16:55:41 (EDT)

I was diagnosed with MM about 3-4 yrs ago. Had STMCA bypass surgery on left side by Dr.Howard Yonas of UPMC, Pittsburgh 2 1/2 yrs ago. I have been under his care ever since until about 6months ago he left and went to Albuquere, NM. I had a cerebral angio on July 18, at Presby and it is showing alot of arteries on the opposite side are now 100%blocked and needing surgery. Just wanted some possible suggestions or input?
Cindy West <cinwest@verizon.net>
Somerset, PA USA
Monday, July 25, 2005 at 06:23:01 (EDT)

I've only had the pleasure to meet DJ in person last week (well a year ago actually, but we didn't have the chance to connect untill this year). His altruistic nature has been the GodSend for thousands of people world wide. He'll never command the spotlight, and will shy away from it when pointed. But he began his ventures into these internet venues for selfish reasons, and they have spread to help and assist sufferers world wide. All of us who have been given the gift to know him up front and personal know that although he is a meer human being..he has acomplished great things for those he cares so dearly for. Deej, I'm honored to know you...you've given so much and asked nothing in return. Love you Dearly my Brother. Pegg
Pegg Flick <pflick@sbcglobal.net>
Stevens Point, WI USA
Sunday, July 24, 2005 at 19:39:58 (EDT)

my daughter has moyamoya and i would like to talk about it with other families she is 32 and has had it since 1999
dotty <dottyann49@msn.com>
edgewood, md USA
Saturday, July 23, 2005 at 01:16:54 (EDT)

My wife said it all, (one post down). I love you, honey!!! This message board is extremely informative. Thank you for all the hard work you have obviously put into it.
Scott Blair <dei@twcny.rr.com>
Syracuse, NY USA
Wednesday, July 20, 2005 at 21:02:01 (EDT)

I am the mother of a 17 yr old boy who suffers from Moyamoya. He also has multiple other problems. He has Hydrocephalus, Neurofibromatosis, Partial Complex seisures, and has had two strokes. I have seen quite a few stories of patients with MM who suffer from head pain, some who are also down syndrome, many who have had strokes. I would like to know if there are any MM patients who suffer from multi neuro problems as my son. I would be very interested in any information they have to share. With the brain damage my son has, it is not possible for him to share with us what exactly he is going through. TY inadvance for any input anyone would like to share. God bless all of you here who deal with the daily uphill battles.
mshane <mshane@twcny.rr.com>
NY USA
Wednesday, July 20, 2005 at 18:34:58 (EDT)

My daughter Courtney has Down Syndrome and MoyaMoya. She will undergo surgery Pial Synangiosis on Wednesday 7/20/05. I will keep you posted.
Rosie PInckney <rosie.pinckney@absfirst.com>
summerville, sc USA
Monday, July 18, 2005 at 11:29:42 (EDT)

My name is Carolyn i am 28, i was diagnosed with moya moya in 2001, after my stoke in 2000. I had a double bypass in Sydney in 2001. I am now married, and am thinking about having a baby, but my doctors don't seem to think this is a good idea. Now i am more scared than when i was diagnosed! I am on blood pressure medication, and asprin. Any advise?. Most of the stories i've read about are in the USA is there anyone in Australia?
Carolyn
Adelaide, SA Australia
Friday, July 15, 2005 at 20:31:52 (EDT)

My name is Jan Takeuchi. I am a 42 year old female. I'm so happy that there is a support group for Moya Moya. I was diagnosed with Moya Moya 3 weeks ago. I was getting ready to go out with my boyfriend when I got this massive headache like I've never had before. I've had migraines for years but this was worse than I've ever experienced. I didn't realize how serious the headache was until my boyfriend told me a couple of days later that I had a droopy mouth. I then told him to rush me to the hospital. From there I was flown by air ambulance to Oahu where I was diagnosed. I have never been so scared in my life. I'm still trying to get my bearings together on what the next step is. Everything is so new to me. Please help shed ssomelight on this for me.
Jan Takeuchi <jankos_1@hotmail.com>
Kekaha, HI USA
Thursday, July 14, 2005 at 03:54:37 (EDT)

I am very impressed with this site, the woman my brother is engaged to, we just found out yesterday has MoyaMoya. She is the mom of 2 boys one 11 and one 2months. this disease really Stinks!!!!!I wish there was a way to find a speicalist closer to help her. She has so much going for her and she is such a good person. I just want my nephews to grow up with there Mom. Is that so much to ask.
Rose <ladyblackwidows@yahoo.com>
Waterville , ME USA
Thursday, July 14, 2005 at 01:45:29 (EDT)

I have Kaiser Insurance and would like Shannon to give me information on her treatment with Dr. Vanefsky. My brother has been referred to him for a large AVM 5X7. Did you find any information on him. The only thing I found is that he is a member of the American Neuorsugeon Assoc.
Sue Alanis <ohscareer@hotmail.com>
USA
Tuesday, July 12, 2005 at 13:02:10 (EDT)

I am 29 years old and was diagnosed with Moyamoya in 1985 at the age of nine. Yes, that makes me one of the oldest cases on record (the 11th in the country to be diagnosed). Every so often I go online and check out the "hits" for moyamoya. My user name is dragonladyRN, but I prefer not to leave my email. Although every story is unique, I feel somewhat alone, since not too many people have been living with this disease for as long as I have. I am looking for information on the long-term prognosis, and from hearing from people that have been fighting this for as long as myself. I will check this posting soon for any information. Thanx in advance!!!
Renee
MA USA
Saturday, July 09, 2005 at 17:53:00 (EDT)

My name is Laura Andersson I was 10 years old when i was diagnosed and i was on vacation with my wonderful parents and older brother Tony he was 13 i was camping at kelly's island in lake erie best camping there is and I went into a general store to get something to drink and i felt kinda weird and dizzy and then i remember sliding my hands down a pop machine and the next thing i remember is a mask being placed over my mouth and being told to count back from 100 and the next was that I was in the hospitals and My uncle Tony Heald was giving me a hug and donatos pizza and graters mint chocolate chip ice cream both my favs at the time and doing physical therapy and relearning how to walk. MY mom and dad were very supportive through this i was left handed before my strokes and i relearned how to pinch and grab but am basically right handed though i have had my moments of yearning for more things mostly to be concidered normal but above all else to be treated like a human being who happens to make mistakes I'm practically addicted to my computer and I have come to except my condision and have learned a lot about and have seen the tears in my parents eyes as they watch me go through things that i shouldn't have to i first blamed my parents then blamed god but now i don't blame anyone because theres no one to really put the blame on this is my story add yours it will help others and support your parents efforts in helping you i did
Laura Andersson <Laura_19a2003@yahoo.com>
Delaware , OH USA
Friday, July 08, 2005 at 14:49:14 (EDT)

Hi my name is Kamilah and I was diagnosed with MoyaMoya on June 6, 2005. I am a twenty-five year old, single-parent of two sons that use to get get verbally and physically abused by my sons father. In June of 2004 he attacked me and threatenened to kil me by chocking me and and hitting me in my head with the phone, if that wasn't enough he kept on telling me that he was going to shoot me in the left side of my head and kill me, right infront of his mother, his niece, and my two sons. It was after that incident that gradually I started to get these very terrible headaches on the left-side of my head. I mean I use to get headaches before and blured vision when he would stress me out, but it was never so severe. On September 5,2005 five I suffered my first minor stroke and I was very lucky because I was on the beach with my two sons and I was in the water leaning over on my sons float when I felt a pain run through my left hand and I got a severe pain in my chest and after that I did not have no feeling in my the left side of my body my hands, legs,face and mouth had no feeling I could not talk properly because my tongue felt heavy. After awhile I was able to regain movement in my left arm and leg so I hurried out of the water to lay down on the sand. After I took awhile and catched my self because I was so scared I didn't know what had just happened to me, but i still didn't regain feeling in my left side but I was greatful that I was able to move it. So I Packed up my kids and drove home. I know that it was by the grace of GOD that i was able to drive me and my two sons home safely because I could of hardly seen out of my left eye, everything just looked blurry. When I reached home I told my mother and she told me she don't know why that happened, but she thinks that I need to go a doctor to get checked out. So the next day I went to work and I know you are probably saying how did I make it to work and all I can say again is by the grace of GOD. When I reached to work my co-workers noticed that my mouth was twisted on the side and that I was talking funny and walking with a limp, so they immediately send me to a doctor because I started complaining about my head. I went to Redhook Family Practice on St. Thomas to see a doctor, I don't remember her name at all I remember her telling me, that I have migranes and gave me some medicine for migranes because of the symptoms I was having which was headaches, blurred vision, sensitivity to light and numbness. She did not even run any test or even evaluate me to see what the actually problem was she just diagnosed me with a migranine. My co-workers wasn't satisfied with what the doctor told me so they took me to Roy L. Schnieder hosipital to the emergency room where the nurses there at the time I came in was telling me I am to young to get a stroke and nothing looks like it is wrong with me because my lips where pink and my fingernails where pink and my co-workers told them that if they can't see that i suffered a stroke and that they didn't know that strokes had an age limit and if they don't check me out thouroughly they are going to sue them. so they did a CAT Scan and a MRI and the radiolgist said that he say a bleed in the back of my head. So they called the Neurologist that was on call and his name was Dr. David Weisher and from the time he came to me I didn't feel comfortable with him cause he said he wasn't convinced that it was a bleed it could be that how my bone in my head was formed and that didn't sound right to me and then he said that he would treat it like a bleed and he then put me in ICU unit for about five days where they kept me under observation and gave me something they said would stop the bleed. For the time that I was in the hospital I was in alot of pain and would loose the feeling in the left side of my body on and off and every time the nurses would try to contact my doctor to ask them what else to give me because the tylenol w/codene wasn't helping me and they could never seem to reach him so they took a risk and helped me out with my pain. For those five days I only saw Dr. Weisher two times and I thought to my self I need to get out of here and find another doctor. Dr. Weisher just released me just like that when I said that I wanted to go home. Usually another doctor would put you on the medical/surgical unit when you are released from ICU, but he never did that because his actions showed that he thought that nothing was wrong with me. I then came to Florida in September of 2004 and have been getting treated and evaluated by Dr. Melvin Grossman of Hoolywood, FL. I was very impressed with the way he delt with me and the different type of tests that he had me go and get done and he actually sits downn and listen to your problems and symptoms. Not like those other doctors on St. Thomas, he first diagnosed me with Vasculitis and I was put on steriods and for a while I started to feel better and then in January of 2005 I started to feel sick again so Dr. Grossman performed some more MRA's and MRI's to see what was going on. And on June 6, 2005 after my MRA's I was diagnosed with MOYAMOYA. My best friend Wilbert Smith looked up the disease on the Internet and found out some information for me that I found rather useful. So I contacted Dr. Steinberg at The Stanford Neurosurgery unit at Stanford Medical center and they are trying to set up my surgery for this month because they say my condition is so severe that they are afraid that I might get a stroke soon if the surgery is not done as soon as possible. So I am now awaiting my surgery and i will keep you posted.
Kamilah Thompson <immortalstone2000@yahoo.com>
St. Thomas, USVI USA
Friday, July 01, 2005 at 14:34:36 (EDT)

i am 19 years old living with moya moya.i was diagnosed with this at the age of six months. i have never had surgery, but the stroke affected my right side. i also see this as a blessing in disguise because with this it made me left handed. and to tell you i have been lucky i have finished my first year of college baseball. i also have to take baby asprin daily to help my blood artieries going to my brain, because i have developed many tiny artieries instead of having a few large ones. i have been blessed with a great family and an amazing girlfreind, the best part of having a great support group is being able to forget about this disorder and live my life.
adam <williewilson18@hotmail.com>
USA
Thursday, June 30, 2005 at 22:27:59 (EDT)

I was diagnosed with MoyaMoya in 1996 after suffering a small stroke. I was quickly diagnosed initial with an MRI and a follow up angiogram. I had the EDAS procedures performed at CPMC here in San Francisco. Ms. Grady's article in the New York Times was the first time I had seen anything other than medical journal articles. Thank you, Ms. Grady. Karen
Karen <kpfau2001@yahoo.com>
San Francisco, ca USA
Wednesday, March 30, 2005 at 10:25:19 (EST)

I know a person (Bryan Taylor) living with moyamoya. He's had it about 25 years now and has only marginal control over some functions. No one (other than me) seems to have any hope that he can ever be helped. What drew me to your site was an article in NYTimes, which mentioned a woman, Kathleen Young, who got her attack while she was working as a gardener. Bryan was a gardener up to the day he suffered this attack. Maybe to help more people and find a solution to some of it you can put up a poll asking what people were involved with as employment/fun so that occurrence patterns can be identified... maybe even the kind of plants that might have been handled prior to the attack. Thanks
Alan
Vancouver, BC CA
Tuesday, March 29, 2005 at 13:15:37 (EST)

This site is amazing. My son was diagnosed with moyamoya in January of 1985 two days after his eighth birthday. He had had a massive bilateral stroke. He had apparantly had a smaller stroke two years earlier that was misdiagnosed. He had surgeries similar to what I have read about here, although obviously much less sophisticated. It is so encouraging to know that research has continued and that surgeons can now use the much more sophisticated tools that are available now to achieve better results. My son's surgery was done at Henry Ford Hospital in Detriot by Dr. Dias. My mother and my son's first cousin were also diagnosed with moyamoya that same year. My mother was 71 and had surgery but continued to have small strokes and died six years later. My nephew did not have the surgery and has never had a major stroke, though many small problems. My son has significant problems because of the extensive damage done by the stroke.
Ann R
USA
Tuesday, March 29, 2005 at 13:02:23 (EST)

Hi. I was surprised today (March 29, 2005) with the story about moyamoya in The New York Times. I was born in La Paz, Bolivia (South America) but now I am living in Ecuador. The fact is the name of the disease startled me because since I was a kid I heard of a "muyumuyu" or "moyumuyu" disease concerning livestock in my country. The word could very well be of aymara or quechua origin, I really do not know, but the similarities about the symptoms are surprising. We used to say that somebody would have "muyumuyu", if he/she was crazy or delusional. In fact, it was (I do not know if it still is) a kind of derogatory remark about someone, but in a festive mood. Since I am not a physician or medical practitioner, I could not know more about this thing, but it impresses me to know that something called very similarly could describe the same conditions, although in the case I am relating, concernig sheep or goats. It was said (I never had a personal experience) that the sheep that got the disease, were infected in the brain and began to circle around and around until they fell dead. I repeat that I am not qualified to say any more than to point into the directions that some research could be directed to find about this "muyumuyu" disease that is present in the upper regions of the Andes, in South America. We never know where we could find an answer to our prayers. God bless them all.
Rene Fernandez <refa@pi.pro.ec>
Guayaquil, Ecuador
Tuesday, March 29, 2005 at 10:13:09 (EST)

This is interesting, haven't talked to anyone else diagnosed with moya moya. I am a 40 yr old female, I was diagnosed at the age of 35, the day I experienced a stroke. Sometimes I feel all alone, but I have a great family and friends who really care, but they don't understand the daily struggles that I experience. I currently take blood thinners & cholesterol lowering meds to try to keep things under control. All I know, is to Hang in There!! and take one day at a time. Life is precious, enjoy it!!!
June Richardson <june@midwestterminal-ky.com>
Paducah, KY USA
Wednesday, March 23, 2005 at 14:02:06 (EST)

I was diagnosed with Moya Moya in 1996 at the age of 26. At the time of my diagnosis I had a major stroke and several minor ones. I came out of all with no complications. My dad did so much research on the subject for me and found the neurosurgeon with the most experience in surgerys in the United Stated. Dr. R. Micheal Scott at Childrens Hospital in Boston. I had surgery in Aug of 96 called Pial Synangiosous. I had both sides done in a 2 week period. I have not had any problems since. I have given birth to 2 wonderful healthy girls. I will have them tested when they are older but I am told this is not genetic. My sisters were tested as well when I was diagnosed with MM and they were negative. I hope this gives people hope. I lead a normal healthy life. I do go to a doctor yearly for check ups but so far so good.
Janet <janetc777@iwon.com>
Colorado Springs, CO USA
Tuesday, March 22, 2005 at 23:55:48 (EST)

I am 16 yrs old have problem sleeping with me keppra and i don't if u do are not but i do and that is y i am doing this i want to see how many people that are on the keppra i just want to talk to them then i will know what the all r going thought i doing know what else to say. from Gian Marie Gauthier
Gina Gauthier <whatsupboys20007@yahoo.com>
COLTON, NY USA
Thursday, March 17, 2005 at 13:06:23 (EST)

Hi Karen, I tried to email you from several different email accounts but they all bounced. Wanted to make sure you saw what I was trying to say to you. I'm wondering why you said surgery is not an option for you simply because the artery at the base of your brain is totally occluded? Actually, that is what surgery corrects. All of the patients on the site have had major blockages in the arteries at the base of the brain and that is what the surgery corrects. They take an artery from the scalp and re-route the bloodflow around the blockage at the base of the brain. It's kind of like a heart bypass, only in the head instead of in the chest. I hope you get the chance to look around the site and read some of our stories. I know brain surgery isn't a pleasant thing to think about, but it is a viable option to correct a blockage for moyamoya disease! If any of us can answer any questions for you, please don't hesitate to let us know. Sincerely, DJ
DJ <survivor@moyamoya.com>
Wichita, KS USA
Tuesday, March 15, 2005 at 23:16:10 (EST)

I wanted to update you on my son Nathan. His surgery was scheduled March 22nd. 2 weeks ago he had rightside weakness and his speech was impaired. He sounded as if he was drunk. We went to the ER and they sent him to Gainesville. Dr. Pincus moved the surgery up to the 7th. After the surgery it took awile for him to wake up, when he finally did, he was very sick and could'nt speak. They did another CT to see if he had a stroke during surgery. It came back fine. When he did finally speak he also had a fever of 104. They did another spinal tap. The fever finally went down. He was discharged on the 10th. Were home now and he is doing good. He's getting stronger everyday. He does have major back pain from the spinal tap and his head hurts alot from the stiches and swelling. He forgets things. Is that normal? Things that happen the same day, he can't remember. I still have a million questions. I was not aware that the disease will not affect his new blood vessels. That is fantastic news. Love learning anything new.
Saundra <Shnay1173@aol.com>
Ft. Myers, FL USA
Tuesday, March 15, 2005 at 21:26:40 (EST)

hi, i am a 49yr old female, i was diagnosed with moya moya about 6 yrs ago. i understand that surgery is not an option for me because the arteries in the base of my brain is totally occlused. i would appreciate any information anyone can give me about this disease. also my father is having the same symptoms although he has not been diagnosed as of yet. he was in japan around the time of the hiroshima bombing. i just wonder if this has any bearing on this disease. i sincerely hope there is someone out there that i can communicate with. please feel free to email me at any time. thank you.
karen wilkins <kpwilkins@porchlight.com>
windsor, ont canada
Tuesday, March 15, 2005 at 17:01:57 (EST)

My name is Tammy Harrison and my husbands name is Pete. We are the parents of 3 wonderful children..Ashley 21 about to graduate college and getting married in July and Allie and Alex 16 yr. old twins...Alex is Down syndrome..for 4 years Alex has struggled and we have taken him from doctor to doctor. Probably more than I have fingers and toes...I've lost count. There Biological father died of a cerbal brain anurysium when they were 4 months old. I have taken all of Alex's medical records, films etc. as well as there late fathers medical records with me to every apointment..At times there was so much that I couldn't even tote them all myself...However just recently we were told (2/23/05) possible MoyaMoya..We were seen by Dr. Barbara Weissman- Emory childrens Clinic-Atlanta,Ga... as a referral from Dr. J.Cuff- Athens, Ga..Just this past Thursday Alex had a CT Angeogram performed and we got the phone call the same night confirming MoyaMoya...Alex's symptoms have been loss of right side and verbal...He cannot raise his right arm above his shoulders and he is now dragging his right leg so that he wears out the toe of his right shoe...(right side only)..He cannot walk up a flight of stairs without holding on to someone..He prefers to get down on all 4's and crawl up them...He experiences alot of tremors with the right hand and is constantly rubbing at his legs at the knees even stopping when trying to walk to hold his knees... We encourage him to walk and help him with every task...He can run a short distance, very short on his toes if he can see his destination in front of him..probably no more than 20-25 feet and has to be sure he has a soft landing place or something to brake his fall that he can catch onto...We are very discouraged and just want to get him the best help..he signs but is now limited by his right hand..so we have to read alot into his actions because his verbal means has turned into one word at a time..where he use to give us 4 and 5 word sentences...his comprehension is great he just gets flustrated at us trying to understand him...He has declined in his physical mobility trumendously in the past 6-8 months...Any help anyone can give us will be greatly appreciated...Dr. Weissman was suppose to have her office to call us friday to set up an appointment so we can sit down and talk but that phone call did not come so I am going to call her today....We want the best surgeon, Dr's Therapist and anything else Alex may need to get him through this...Your comments will be very much appreciated..Thanks DJ for this website and God Bless everyone in there journey with the battle of MoyaMoya and your success in winning the war...We all will win with the proper care and God as the Head Physician... I welcome comments and recomendations from anyone....You are all in our prayers and we desire yours as well.....
Tammy Harrison <Tambo1721@aol.com>
Gillsville, Ga USA
Monday, March 14, 2005 at 10:25:07 (EST)

Two weeks ago I was diagnozed with moya moya. I was told that i´m the 5th person in Sweden ever with this syndrome. I have not been able to find any information at all in swedish about this on the net but this seems to be a good site though... So if anyone from Sweden or the nordic regions who has MM or has someone in there family with the syndrome please do not hesitate to contact me. Thanks.
Teres Jakobsson <teresjakobsson@hotmail.com>
Sweden
Thursday, March 10, 2005 at 12:02:25 (EST)

Im 17 going on 18 and born in America. My mom and my 2 brothers moved to Germany about 6 years ago. Last year we found out that my mom has moya moya. She got operated and I thought i would loose her for good. But my mom was lucky. It still breaks my heart. I dont really like talking about it. This website helped me to learn more about moya moya. Im happy that this website exists. So thanks
Klümpchen
Alsdorf, Germany
Wednesday, March 09, 2005 at 04:50:14 (EST)

I was 23 whan thay told me i have moyamoya. I'm still unsure about what is going on can someone halp me understand.I'm 25 now and some of the doctors that i've seen don't have much to tell me.
Winnie <joicesar@yahoo.com>
broolyn, ny USA
Monday, March 07, 2005 at 12:13:24 (EST)

I am a 23 yo male who has just recently suffered a stroke on the right side of my brain. Upon arrival at the hospital I had a ct scan, and early the next morning a angiogram which uncovered the "puff of smoke"or MM. The stroke resulted in full weakness in my left side on jan. 9, 2005 since then I have been admitted to rehab where I have regained most of my strength and am still seeing physio twice a week. I have since seen a nerologist who has informed us of my upcoming surgery later this year.This site has been reassuring, because the doc who will be performing the surgery hails from Stanford.
Joshua Finnamore <finnamorejk@sympatico.ca>
ottawa ontario, canada
Friday, March 04, 2005 at 14:10:10 (EST)

Pain relief for severe headaches My Daughter Laura has had MM for 5 years after 2 EDAS and Multy Burr Holes she had been well for approx 18months since Jan 05 she has had severe headaches which has put her into hospital all pain relief they have tried is unsucessful, including calcium Blokers. Also she has lost the use of her lower legs and is now using a wheelchair. despite having CT with Angioram and MRI the hospital are unable to say weather connected with the MM does any one have similar symt