Internet support for those diagnosed with Moyamoya Disease

Guestbook Archives from Jan - Dec 2003

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Hi! My name is Michelle. My daughter Cally was diagnosed with Moya-Moya Disease in late 2000. She was a perfectly healthy child until she was 4 years old. At that time she started having episodes of numbness, her mouth would be drawn to one side and she couldn't speak for any length of time. She was sent to a neurologist and a number of tests were run on her. They couldn't find any thing wrong so the doctors diagnosed her with complicated migraines. She was put on Tegretol and Inderal. She got a lot better and hardly had any more problems until she was 10 years old. At that time she started experiencing some numbness in her hands. She went back for more tests and that is when we found out that she had Moya-Moya. Her doctors really didn't know a lot about the disease and we were really scared. Since we live in Louisiana we went to Texas Children's Hospital in Houston. She had her first surgery in January of 2001 and the second side done in February of that same year. She is 13 years old now and perfectly healthy. At her one year check-up her Dr. (Dr. Robert Dauser) said that her results were one of the better ones. She is very lucky not to have had a massive stroke. There was a small lesion on the front of her brain but thankfully it didn't leave any permanent damage. I believe that the Inderal, which is a blood thinner, saved her from having a bad stroke. We feel very blessed. I would be glad to answer any questions that I can.
Michelle <>
Campti, LA USA - Monday, December 08, 2003 at 20:26:54 (EST)

Hello DJ how are you doing sorry it has been a long time since we got on. Wanted to let you know that Amber is doing good they are back with their mom in waco we hear from her often they were up this weekend but we missedthem for we were out in newark. just wanted you to know that we have not forgot you we think of you often. we just want every one on this web site to know that Darren is a Angel of mercy and had it not been for his web site our Amber would have had a stroke of massive capabilities, he put us in contact with dr.stienberg and we are so thankful that God put DJ on the computer to help other you know God works in mysterious ways.I will be forever grateful to him and love him for his help DJ we just want you to know that we are thinking of you and we wish you a very merry christmas and a blessed new year. we hope you are well and that you are taking care of yourself. Thankyou again from the bottom of our hearts. we love you Joyce, Arnold Stierwalt.
Joyce Stierwalt <>
Ft.Worth, TX. USA - Sunday, December 07, 2003 at 23:08:59 (EST)

Hello DJ how are you doing sorry it has been a long time since we got on. Wanted to let you know that Amber is doing good they are back with their mom in waco we hear from her often they were up this weekend but we missedthem for we were out in newark. just wanted you to know that we have not forgot you we think of you often. we just want every one on this web site to know that Darren is a Angel of mercy and had it not been for his web site our Amber would have had a stroke of massive capabilities, he put us in contact with dr.stienberg and we are so thankful that God put DJ on the computer to help other you know God works in mysterious ways.I will be forever grateful to him and love him for his help DJ we just want you to know that we are thinking of you and we wish you a very merry christmas and a blessed new year. we hope you are well and that you are taking care of yourself. Thankyou again from the bottom of our hearts. we love you Joyce, Arnold Stierwalt.
Joyce Stierwalt <>
Ft.Worth, TX. USA - Sunday, December 07, 2003 at 23:08:58 (EST)

Hello DJ
Joyce Stierwalt <>
Ft.Worth, TX. USA - Sunday, December 07, 2003 at 22:54:04 (EST)

my daughter is 5 she has moya moya.
jane/chloes mum <>
bradford, uk england - Thursday, November 13, 2003 at 16:54:00 (EST)

Hi, my name is Tim Koto I am 45 years old and I was diagnosed with MoyaMoya in June 2002. I had two bypass surgeries by Dr. Gary Steinberg. I am very lucky because I also work at Stanford Hospital. My wife works there too. In the MRI dept. With the help of her and her supervisor I was able to see Dr. Steinberg. I was diagnosed on June 20, 2002 and my first surgery was on June 26th. Presently I just had another MRI, Spect Scan, and Angiogram. I've been suffering severe headaches lately and I can't see Dr. Steinberg until Nov. 24th. I just want to thank everyone for their support.
Timothy Koto <>
San Jose , CA USA - Saturday, November 08, 2003 at 18:45:06 (EST)

I am a pediatric psychologist and have been practicing at the Children's hospital in Calgary for the last 24 years. In May this year I had a mild stroke. A few weeks later I was given and angiogram and was diagnosed with moyamoya. I had never heard of this condition before. My husband and my son researched all over North America to find out what could be done. We found that in Calgary there was a surgeon who was one of the few people in North America who did the kind of surgery that I needed. So, I had my first surgery in June and the next one in September. My surgeon told me that I am cured now. I am very lucky as my stroke has only affected partial vision in the lower right quadrant. My surgeon told me that it is very rare to find a patient with MoyaMoya at my age. It usually occurs in children. He also told me that many years ago I had had a stroke which had not affected me in any way. I recall now that as a child growing up I used to faint frequently. As these episodes lasted only a few seconds, no one could tell me why I fainted. I also suffered from numbness in my fingers and remember not being able to get the words out of my mouth on one occasion. No one could understand why this was happening, even though I went to see a neurologist. Now I know why I had those symptoms. Even though I am a psychologist and sometimes used to think if I was imagining what was happeneing to me, I am relieved to find out that there was a reason. I would like to hear from others who might have experienced what I have.
Dr. Swapna Gupta <>
Calgary, Alberta Canada - Tuesday, November 04, 2003 at 12:54:26 (EST)

My name is Jane my daughter Chloe has moya-moya she is 5 she was diagnosed when she was 1. She has had surgery on both sides of her brain which were both sucessfull.If anyone has a child who has moya-moya please contact me I would love to hear from you.
jane <>
bradford, england - Saturday, November 01, 2003 at 11:00:31 (EST)

I've been looking for this site for 1 1/2 year now. My son, Christopher was diagnosed with MM when he was 9 months in Feb 2002. Right after, he had two EDAS surgeries and suffered a few strokes. Currrently, he is doing wonderful, except for his left foot. He uses foot braces to help him to walk At the time, I did not know any thing about the disease and needed to find someone to talk to but was not able to do so. Accidentally, I've founded yours. Through your web sit, I just can't tell how thrill to find out that there are so many more people with the same problem. Thanks again.
Susan Ly <slyprescott@ev1net>
Houston, TX USA - Friday, October 10, 2003 at 07:59:29 (EST)

Hi, I was just released yesterday, Sat. 9-13-03, from Stanford University Medical Center after my 3rd bypass surgery was performed. I am 19 years old and am so relieved that I was lucky enough to have this surgery before any permanent damage. My first 2 surgeries were done at the end of my senior year right before graduation and I was quite reluctant to get this done. My parents left me no choice, I was upset at the fact that it was about a month before i was supposed to graduate but after the surgery I realized how lucky I really was. My diagnosis was a lengthy process (email if you are interested in what i mean). Upon returing home to Maui, my teachers were very understanding and i was able to walk the line and graduate on time. Everything was going very well no migraines, no numbness of my fingers, no involuntary movements, slurred speech nothing, until, July of this year, (2003) i started to get severe migraines again and my tongue started to feel like it was getting swollen although it actually wasn't and i was beginning to get numbness in my right fingertips and right side of my face. I tried to play it off afraid of having to endure all the MRI's, angiograms, and other tests. But I started to get scared as the headaches got more frequent, I finally told my mom and she made an immediate appt with the local neurologist. Within the week i had my angiogram and MRI done and was up here ASAP they could fit me in. I wish I could've said the same as DJ and some of the other patients, but I am still in pain, mostly from the incision and headaches associated with it, and also my veins hurt from all the iv's. I have very tiny veins so the nurses had the hardest time finding my veins which resulted in at least 5 unneccessary pokes, but I guess my pain I'm having now is not permanent and quite minor compared to the circumstances that would've happened if i did not have the surgery. I can't wait to go home to Maui on Thursday. I will finally get to see my family, boyfriend, and friends who have all been so supportive and all prayed for me which i know has got me through this so much faster. The only thing I am dreading now is because I left 2 weeks into my 5th semeseter of college so suddenly i will have a massive amount of catching up since i'll be out about a month :(. That's okay, I'll make it. If I can make it through this ordeal I think I can make it through almost anything. I know everybody else who has this disease will overcome it and shouldn't hesitate about getting the surgery done because it will not go away by itself. It will only get worst. Please don't blow it off, the only thing that will happen if nothing is done is to have a stroke or even worst. Thank you DJ for putting together a great page and all the support because I think a lot of people want to know about this rare disease but don't know where to turn. Thank you also Dr. Steinberg and all the neurosurgery staff and nurses in the ICU and on B3 at Standford Univ Med. Cntr. for all the care. Mahalo . . . Aloha . . . Good Luck to all
Melina <>
Kahului, Maui, HI USA - Monday, September 15, 2003 at 02:17:01 (EST)

I had my 1st surgery Dec. 31st 1998--99 and my second surgery Aug. of 2000, I just got my results from my EEG and Necular Med. Scan Tuesday ( sept. 2, 2003) My Neurologist said I have narrowed alot in both frontal lobes and I might need surgery again..Anyone ever hear of this happing to anyone else ??????
Elaine <>
Westerville, OHIO USA - Thursday, September 04, 2003 at 20:21:15 (EST)

Hi Alison, I have just read your message from the website and it caught my eye that you are in the UK. we too live in the UK, Surrey. Our 2 year old daughter has just had 2 surgeries for Moyamoya in Great Ormond Street this July. We are looking for other families in the UK to talk to, get & give support. My daughter has a very slight weakness from her stroke in March. Would you like to get in touch? Nancy
Nancy <>
UK - Sunday, August 17, 2003 at 05:40:59 (EST)

Just sat and read some of the messages on this board and wanted to tell you its so nice to hear from people who know and live with moy moya, my daughter Bethany does cope well but its hard when she wants to be the same as her little sister Jessica who has no problems with right sided weakness, taking medication or hospital visits. Bethany is our little miracle but if there is anyone who can give us some help, that would be great.
Alison Lynn <>
Tyneand WEar, UK - Thursday, August 14, 2003 at 10:07:49 (EST)

Daughter 9years has Moya Moya no help line here in UK would like any help, she suffered stroke before surgery resulted in right sided weakness any tips on helping her to adapt, play sports, balance etc here's hoping!
Alison Lynn <>
Tyneandwear, UK - Thursday, August 14, 2003 at 09:56:44 (EST)

very cool site. you are a survivor
Maj Bill Novak <>
USA - Wednesday, August 06, 2003 at 09:36:54 (EDT)

Dangit all DJ I met you last summer in Vancouver thinking ClusterHeadaches were my only problem now I find out I have this crud too I wish I spent more time talking to you about it then. ltltnt
Sheryl Barnes <>
Phoenix, AZ USA - Monday, August 04, 2003 at 12:29:21 (EDT)

I am now almost 60 years old. I was diagnosed with MM in 1998 after having had several TIA's. I was living in Fla at the time and obviously never heard of the desease. I was very fortunate that my doctor had studied under a neurosugern at Duke University. For over a year all doctors were trying to find a cure (there is none). Duke doctor put me on cumadin (sp?), a blood thinner, and that seemed to work - no more TIA's. November 1999 the doctors slowly took me off cumadin. Within days I was having TIA's again. My husband said thats it - operation now. At this time I had some slurred speech, difficulty speaking fairly easy words and my middle right finger the tip was numb. I had done my homework on the net and knew about Dr. Steinberg at Stanford U. in Calif. He had started and perfected the surgery for MM 10 years before. My husband had me scheduled on December 21 for surgery on the left side and right side on December 28. First surgery and my husband immediately noticed a major improvement in my speech. Other surgery went well too. Dr. Steinberg took one artery from each side of my head and attached it to vein about 5 inches above each ear inside my head. The surgery was very easy, no pain and recovery quick. They did discover that I had had a very mild minor stoke. It is now 2003. I have continued doing everything I did before. Plus I am taking up flying lessons. I did quit scuba diving since I did not want to put pressure on the brain. If anyone has any questions please email me. JonNJer@aolcom
Jeri <>
Penhook, VA USA - Thursday, July 24, 2003 at 17:05:44 (EDT)

DJ, I just saw your webpage via a tech here at Stanford! I was the one who "glued you up" for your first surgery! I'm glad all went well with your procedures - you look great in all your photos. Scars make you look ruggedly handsome. ;) Hope you are continuing to do well. Sherry Padgett R.EEG/EP.T
sherry padgett <>
stanford, ca USA - Friday, July 18, 2003 at 17:43:25 (EDT)

hi my name is sue quintana...i just found out that the stroke i had in june of 2001 was because of moya moya whole family is very concerned about this...we are very upbeat and concerned that i will do well with the surgery...pray for me and let me hear from you soon...
susanna c.quintana <QUINTS@ODJFS.STATE.OH.US>
lakewood, oh USA - Thursday, July 17, 2003 at 10:10:09 (EDT)

My daughter, Lizabeth, had her first stroke in Dec., 1979. In Dec., 1980 she had a second stroke and was diagnosed with Moya Moya Disease. At that time we could only communicate with eye blinks. She couldn't move and had to be fed by tubing. We were told she probably wouldn't live for more than a few years and if she did she'd be a total vegetable and die within 10 yrs. of cerebral bleeding. We went to Mayo Clinic and were told to take her home and make her happy. A few months later a new surgery came out of Japan. Our doctor at Evanston Hospital (we lived in Chicago then) talked a surgeon into operating. As far as we know, Liz was the first one in the U.S. to have the surgery and only the 6th and youngest in the world, at that time. The surgery restored good circulation but she still continued to have from 2-12 TIA's daily until she was 14 yrs. old (she was 2 yrs & 10 mo. when she had the 1st stroke). She was put on Cardene and hasn't had a TIA since. Liz has regained the ability to walk and use her right arm and hand. She can now eat and drink but has some problems with it. She also communicates with a Touchtalker and the computer. Lizabeth is now in college and taking business computer classes. She is now 26 yrs. old.
Tobey Elovitz <>
Thousand Oaks, CA USA - Thursday, July 10, 2003 at 17:32:48 (EDT)

Hi, My roommate Elaine was diganosed with MoyaMoya in Aug. 2002, when she had a stroke, she is 38 had her first stroke when she was about 22.I am worried about the treatment she is getting because she was schedule for surgury on Nov. 4 2002 at the University of Michigan. One week before the surgury the Doctors cancelled, hoping medicine would take care of it. In Feb 2003 she was back in the hospital with tias two different times. They finally scheduled her last week with a surgury date as of Aug. 11. But the artery they where planning to use in Nov. is no longer there. Today we have been notified that they are moving the surgury back to Sept. 5. I don't know if the neurloligists at the U of M know enough about MoyaMoya. Would you suggest we contact a differnt Neurloligists to see if they would move quicker. She is very fatiged all the time & has been off work since Aug. 2002.
Chris Vanness <>
Essexville, MI USA - Thursday, July 03, 2003 at 19:43:53 (EDT)

Hello DJ, You have definitely done alot with your page since I first came looks very nice. The video clip was very interesting...I hadnt seen it before. I am the mother of a 7 year old little boy who was diagnosed with MoyaMoya about two years ago. My son was misdiagnosed for almost a year as just having migrain headaches. I would bring him back to the doctor over and over until finally they decided to do some tests. Due to some irregular responses they decided to do an MRI...Luckily for us, we were referred to a Neurosurgeon who was familiar with Moya Moya and sent us to Dr. Scott in Boston. 4 weeks later my son had his surgery. Since the surgery he no longer has TIA's and his headaches have become very infrequent. I consider Dr. Scott a miracle worker...Last year we went for his follow up and the arteriogram showed that he now has normal blood flow to his brain. So the surgery was a success. The only medication that my son is on is one baby asprin a day, and he is living a very normal lifestyle, full of sports and other activities. I thank God everyday for the Drs and staff at Boston Childrens Hospital who caught this disease before he had a stroke and had to suffer any permanent damage. I must say after speaking to many of the parents on my Yahoo group, that these children are tough little cookies and most of them are doing well. They have definitely been an inspiration for me... To all of you parents who are going through this with your children, and those of you who are suffering with this yourselves...Have will turn out fine.
Leilei <>
USA - Tuesday, July 01, 2003 at 16:56:14 (EDT)

My 14 month old son Mujahid is scheduled to have his second surgery July 11th!
mishell <>
san diego, ca USA - Friday, June 20, 2003 at 00:57:51 (EDT)

Hello, my name is June, parent of 17 year old daughter who has just found out she has moya moya disease. It was a month ago, I was alarted by her right face frozen. The stroke was very minor, but because of the school year near end and unable to catch up with her work, she will be missed going to university or even graduate. We are having a difficult time to corp with her because of her age. Whether she has recognized her condition, she is not taking seriously about her health. We are not sure this is because her brain not be able to reason the situation. She has been very much like this about couple of years. Her attention span has been very short. Anyone who lives in canada and has a information about Doctors in Vancouver area, and anyone who has teenage kids, I would like to hear how you corp with your child.
june <>
West Vancouver, BC Canada - Thursday, June 19, 2003 at 17:16:27 (EDT)

My beautiful 21 month old daughter, Emily, (twin) was diagnosed with Moyamoya on 29th May 2003. She is scheduled to have her surgery in Great Ormond Street on 30th June. I'd love to hear from other parents who have had children of a similar age with Moyamoya. But also, could some aldults tell me what they go through with the operation i.e. headaches etc. as Emily is too small to tell me. PLEASE HELP. Nancy
Nancy <>
UK - Thursday, June 19, 2003 at 06:42:27 (EDT)

I recently brought my son, already diagnosed with moyamoya, to the emergency room because he was having seizures for 2 and 3 hours. They said that he was constipated and sent us home. My husband says that they are not seizures, he is throwing tantrums. On Monday I find out that he has Moyamoya on the other side of his brain too!! My openion, although right, isn't recognized or taken into consideration. I keep getting looked at as an over protective mother. I am so annoyed!! and angry.
SAN DIEGO, CA USA - Wednesday, June 11, 2003 at 22:54:01 (EDT)

Hi My name is lisa and my son augustine was sick since he was 2 years old. He passed away in December of 2002 they did an odtopsy and found out that he had moya moya disease. I wish they could of found it earlier so that maybe we could of had him with us roght now because maybe they could have done something to help him. He was only 9 years old when he passed away. It was very hard to take him off of the ventalater and let him go. If anybody has some encorageing words to help me please send anything because I am still having a hard time accepting what happened.
Lisa <>
Scottsbluff, Ne. USA - Tuesday, June 10, 2003 at 21:14:35 (EDT)

hi Julia, We are also in Canada, right next door in Alberta. My daughter has yet to have an operation, we are still in the waiting faze, to make sure that it is MM. We will know more the first part of July. Where was your surgery done? Did your dr know much about MM? Keep in touch! Susan
Susan <>
Alberta, Canada - Friday, June 06, 2003 at 18:00:44 (EDT)

My son was diagnosed with moyamoya at 10 months old. He is now 13months and has had 1 surgery. He still contenues to have seizures which seem to become more frequent and worse. It is wonderful to know that there is a support group. I am a young mother and this is weighing so much on my heart right now. Any supportive words of encouragement is appreciated.
SAN DIEGO, CA USA - Thursday, June 05, 2003 at 21:49:47 (EDT)

Hi everyone.I'm the mother to Jennifer.I know a few of you all.Jennifer has a stroke on her left hand on Jan 6, 2000.She had just turned 18 Dec.31 It was a very big shock and we were very worried just like you all are.She finished her serior year and then in Aug.she had her surgeries two weeks apart.She had a very easy time and went home the very next day. After we were home a month or so we learned she was having a baby so we had something else to worry about. She did real well and Kandice is now 2. Jennifer has went on the be a funeral director and Has no problems so far.I wish you all the best of luck and I love to have this place to come too.Carol
Carol <>
Houston, Tx USA - Thursday, June 05, 2003 at 19:54:06 (EDT)

hi im julia i have moya moya and i have had 3 surgeriries in my life they did not work. i am now on medication to make my blood vessels bigger but ui still have a stroke about every 2 years i am 14 now and it has been hard to get used to not being able to do some of the things that all the other kids do but im used to it now
Julia <>
Nanaimo, british columbia Canada - Wednesday, June 04, 2003 at 13:19:11 (EDT)

hi im julia i have moya moya and i have had 3 surgeriries in my life they did not work. i am now on medication to make my blood vessels bigger but ui still have a stroke about every 2 years i am 14 now and it has been hard to get used to not being able to do some of the things that all the other kids do but im used to it now
Julia <canadian_girl)>
Nanaimo, n/a Canada - Wednesday, June 04, 2003 at 13:15:48 (EDT)

I was diagnosed with moyamoya in Jan 2002, requiring a sta bi-pass, the moya moya had only affected one side of my brain. My operation was a success, I now have suffered anxiety as a result this, but I am doing every thing I can to over come this
michelle <>
Glendenning, nsw Australia - Saturday, May 31, 2003 at 01:42:48 (EDT)

Susan -- my son [age 5] was operated on last week by Dr. Scott in Boston. It was the right side only. The surgery went fine. Without it, I'm told that he would have had a stroke or a series of strokes. He had one TIA in February [severe headache; left side weakness]. We were lucky to get such an early diagnosis. Will's biggest objection was the IV but other than that, there were no complaints. He jumped out of bed two days after surgery and was all over the hospital. By the time that we could leave on Friday, he didn't want to -- too much entertainment there!! Since the surgery was only on one side so there is a real possibility that we may be back next year for the left side. But one day at a time.... Ginny
Ginny <>
USA - Tuesday, May 20, 2003 at 16:56:18 (EDT)

Hello again. I think the realization of my daughters (8 years old) having had a stroke has set in. It is 2 weeks today that we learned that she had a stroke and now we have been left with the diagnosis of "probable moyamoya". She is on asperin once a day and they have given us the option of surgery. It is such a difficult decision to make without the exact diagnosis. Is this something that will get better on it's own...we don't know and fear risking her future by waiting. Has any one else had it only on one side of the brain? Any information I can get at this point will help. Thank you for this site!
Susan <>
Canada - Sunday, May 11, 2003 at 01:52:33 (EDT)

hello, this isnt because i have moyamoya, but because my aunt does, and i was wanting to know much more about it. i also would like Dj's email address so i could reach him.
cacey <>
USA - Friday, May 09, 2003 at 13:44:43 (EDT)

Hi!D J. My name is Tom and I live in howell N.J Iíve become a MM friend ofLlisa. I am 47 and suffered a stroke14 months ago. I was given immediate angiogram and within hours I was diagnosed with moyamoya. I thank GOD that I have progressed from being totally unable tomove my left side to walking over a mile without a cane. Although I am doing well physically I am battling depression and a lot of fatigue. I went to see 2 of the best neurosurgeons in the country. Dr. E. sander Connoly of Columbia Presbeterian in NYC and Dr. Christopher Ogilvy of Mass General in Boston. They both agree that surgery is not needed at this time because I have good blood flow and not much would be accomplished. The problem is how do you live with this condition knowing that it could cause another stroke at any time? Any suggestions? anyone can feel free to call me at 732-938-3038 or e-mail me at Since I wrote the top portion of this entry Iíve returned back to work as a special ed.. Teacher. I also have had a follow-up angiogram on Feb. 28 2003, I got a very good report. Orininally my moyamoya was considered severe but the endo vascular neuro surgeon at Columbia who sees a lot of MM said He felt it was a mild case. I also had a very small anuerism earlier that had now disappeared. My deficitare difficulty walking, general left sided weakness and loss of left side peripheral vision. Fatigue and depression are still a problem but Iím learning to deal with them. For anyone on the East Coast with MM Columbia Presbeterian Has as good a stroke center as you will find and Dr. Connoly and Dr. Lavine have as much experience with MoyaMoya as any one in the country. If anyone would like Their numbers, ? feel free to call me at 732-938-3038 or e-mail me at PS Prayers really do work!! Goodluck and god bless you all Tom G.
Tom Gallucci <>
Howell, NJ USA - Tuesday, May 06, 2003 at 19:53:55 (EDT)

Susan, there are alot of people here who are going through, and have already been through the same thing you are facing. If you have any questions or we can help in any way, please don't hesitate to ask some questions on the Message Board. Just follow the "Communicate" link to the board at the top of the page...
DJ <>
Wichita, KS USA - Friday, May 02, 2003 at 00:23:52 (EDT)

It is wonderful to hear so many people surviving this disease but my husband was not diagnosed with it until after he experianced a massive stroke at the age of 30 and then his autopsy was is diagnoses. This seems so uncommon to all the stories of surviving the strokes and then going onto the surgeries, has there been many deaths from Moyamoya? My husbands brain began to swell 2 days after the stroke and then the swelling ended up making him brain dead-Was there any special treatment given for the strokes in these stories and could have any surgery been performed immediately to replenish the blood and oxygen flow back to his brain following the Carotid Ultra sound or MRI which showed the blockage still there even 6 hours before he was pronounced brain dead? Was the diagnosis of the strokes delayed because of age or because of having the disease which caused undue damage? Does anyone know if this is hereditary-I have 3 daughters my husband left behind that I am so worried about. Sorry for all the questions, I am just really confused about "a rare disease". Thank you DJ so much for giving me a chance to get some answers and for sharing your story.
Shana Turner <>
Redmond, UT USA - Thursday, May 01, 2003 at 02:07:03 (EDT)

We are currently undergoing the diagnosis and treatment of Moya Moya in our 8 year old daughter. Our lives have been changed forever by this Moya Moya.
Canada - Thursday, May 01, 2003 at 00:44:11 (EDT)

My sister is 29 years old. It is a rare disease and rare for an older person to get this disease. Please if you have any information write me at 6423 S. Woodlawn St. Chicago, Il 60637
Helen Rivera <>
Chicago, Il USA - Monday, April 28, 2003 at 12:33:06 (EDT)

I was just diagonosed with MoyaMoya today. And Im so uncertain of my future. It scares me not to know much about this disease. Any help you could give me in this matter would be greatly appreciated..Sincerely Tresa Jones
Tresa Jones <>
nashville, tn USA - Tuesday, April 15, 2003 at 22:40:56 (EDT)

my daughter was 27 when she had her surgery on the right side she had a stroke that wiped out her memory and eye sight in the 3 years since she has been on disabelty and learning from the beggining she can write her name now and function a little also it has been a rough road for her i was wondering if she has the other side done will the same thing happen again she is also a brittle dibetic any info will be helpful thanks
dotty <>
edgewood, md USA - Sunday, April 13, 2003 at 20:58:39 (EDT)

My husband was recently dianosed with Moya Moya, I'm trying to find out all I can about this disease. He is 51 yrs old and we just found out. We need to go through all kinds of test to see if he need an operation. I need some help on this, I don't know what to expect or what symtoms to look for or how to help him now. It's going to take about 2 weeks before we go to the Doctors. If anyone can offer any information it would be greatly appreciated. Thank you and God Bless
Nancy <>
Philadelphia, PA USA - Friday, April 11, 2003 at 22:05:32 (EDT)

My mother, Lana, who is Korean was diagnosed with Moyamoya disease yesterday after undergoing a cerebral angiogram. She was admitted to the hospital on 04/02/03 because of an abnormal CT and MRI scan. Today, a nurse at the hosptial printed a page from DJ's website and gave it to my dad. We are feeling somewhat overwhelmed right now, because of the rarity of this disease. My mom is 54 years old and was having visual disturbances, hypertension, dizziness, and a horrible headache that would not go away. She had a stroke in 1997 while she was in her 40's. Thank God, she only had mild residual symptoms after her stroke. I'm wondering, now if she may have had MM dz then, her age then makes more sense (from what I've read.) Her neurologist told us that she would be treated with medication (ca channel blockers and antihypertensives). He said surgery was not indicated. I just can't bear the thought of my mom living her life like a time-bomb, just waiting for another stroke to happen. She has a follow-up appointment on 04/09/03 with the neurologist, I am going with my mom and dad because I have a lot of questions, I'm an RN myself, and being able to understand what I've read so far, is almost frightening. I apologize for this lengthy entry. If anyone has advice, we would really appreciate it. Thanks
Sandy <>
Winston-Salem, NC USA - Saturday, April 05, 2003 at 20:48:41 (EST)

I would like to know how moya moya patients generally feel after they have been operated on and back on their feet. My son complains of fatigue and I am not sure if this is a result of moya moya or not. Let me know how you feel. thank you
sandi lawler <>
greenwood, in USA - Wednesday, March 19, 2003 at 00:34:55 (EST)

Hi..I was recommended to this site by Elaine Calvert. Pretty awesome. My wife (35yrs) was dx'ed with mm last year in June, after suffering tia's and strokes for a while.She had her surgery in July, had another stroke and other stuff. She is doing really well now after a few setbacks. Not many New Zealanders with this disease...if any. Nice to read the stories.
Dean Viviani
Hamilton, New Zealand - Thursday, March 06, 2003 at 17:42:47 (EST)

Hello, I am Mandy's aunt from pennsylvania. I just want everyone to know that we are praying and hoping for the best today with Mandy and Amber's surgeries. I ABSOLUTELY love the pictures. I was so excited to see them posted. Thanks for all the updates. It's great!!!!!!!
denise <>
croydon, pa USA - Wednesday, March 05, 2003 at 08:13:21 (EST)

My son 11-year-old son is undergoing testing to confirm a Moyamoya diagnosis. He has had one stroke that left him without use of his left arm, he is starting to get it back though. Any information your willing to share would be greatly appreciated. Thank you.
Rena <>
Trinidad, CO USA - Saturday, March 01, 2003 at 17:17:47 (EST)

Hi, I am the mother of Louise, 7 years old who was diagnozed with moyamoya in oct 2002 after a few strokes( that whe didnīt even notice ) and quite a lot of TIAīs that started in late summer 2002. MM is a very unknown disease in Europe and Sweden and I think we were very lucky to get a fast diagnose. After that Louise was put on blood-thinner (she also has a inherited defect in her bloodcoagulation called APC-resistance) and extra oxygen when needed.Louise had her surgery Dec 2002 on both sides, the operation was going on for 14-15 hours and went really smoothly. Since 5-6 weeks she is doing better and better and the scars are almost invisible. Her doctor was in contact with Dr. Scott in Boston several times to prepare for the surgery and so was I (on mail). I so much would like for Louise to have contact with others with MM when she grows up, right now I dont think she feels that need. Mow that I found this site I will be seing you every day. To you DJ; You are a fantastic person to go through all this trouble and work to start this page for MMvictims and their families. And to all of you out there; It gives me great comfort that you will share your thoughts and worries with others. Annica
Annica <>
Stockholm, Sweden - Saturday, March 01, 2003 at 12:54:18 (EST)

I was diagnosed with MoyaMoya in 1999 at the age of 26. I had a mild stroke and was able to walk out of the hospital on my own and back to work the next week. I was and still am very lucky. I do want to know if there are now more cases of adult onset moyamoya then I found 4 years ago, or are we just now diagnosing the problem correctly?
Shelley Judd <>
Austin, TX USA - Friday, February 21, 2003 at 18:13:59 (EST)

Hi Amy--It's wonderful to hear you're doing so well after having a stroke and being diagnosed with moyamoya. Do you mind if I ask you a few questions? I too am learning more about this disease through DJ's site and would like to understand more and how you recovered so well. Did you have surgery? What medications did you take, if any? and do you have frequent follow-up visits and tests after your recovery? My niece has been diagnosed with moyamoya and all the information I can get will be helpful. You can help a great deal with such an inspiring experience.
Marlene Riccardo <>
Philadelphia, Pa USA - Friday, February 21, 2003 at 00:58:13 (EST)

hello my name amy robinson and i was just browsing your site because i am doing a project at school over this disease that i did have. i had a stroke when i was five and the doctors said i was the youngest patient in connecticut to have moya moya "puff of smoke" i was suppose to have open brain surgery when all of sudden i was completley recovered having no surgery. i was in the hospital for months on end with my recovery and was paralized on my right side and had to learn everything over again so reading you site made me go back to when i was child and didnt understand but you web site helped me learn now. i am 23 today and have no side effects what so ever and thank god everyday for being alive. Thank you.
Amy Robinson <>
Tampa , FL USA - Thursday, February 20, 2003 at 09:41:28 (EST)

DJ,Jennifer's surgeries sound just like yours.She had them done here in Houston and the doctor was just wonderful.MoyaMoya is pretty well know here in Houston.Thanks so much for this site.It is such a wonderful feeling being able to talk to other people.It was really scary in the beginning.God Bless
Carol Santellana <>
Houston, Tx. USA - Saturday, February 15, 2003 at 00:01:24 (EST)

Carol, glad to hear your daughter is doing good. Do you mind me asking what surgeries she had and where she had them done?
DJ <>
Wichita, KS USA - Thursday, February 13, 2003 at 00:33:36 (EST)

My daughter is 21 and has MoyaMoya.She had her surgeries in 2000 and has done wonderful. She went on to have a baby 9 months later and everything went perfect.It was very scary at first but with all these wonderful people you met and God everything works out just fine. God Bless Carol
Carol Santellana <>
Houston, Tx. USA - Thursday, February 13, 2003 at 00:21:14 (EST)

DJ, wonderful site, I'm glad to hear you are doing well. My daughter Amanda had strokes at 9 & 10 months of age, she was misdiagnosed until the age of 11 years old. She had two surgeries in July and August of 2000. She is doing pretty well now considering everything she has been through.
Tricia <>
Ontario Canada - Saturday, February 08, 2003 at 22:23:15 (EST)

DJ that sounds like what I've read about the disease in children also. It gets progressivly worse. Kathleen's strokes got worse over just 3 months.Asprin therapy is extremly important, but she had to go off it for her angiogram and then again for surgery.She had strokes both times.She actually had one the day before surgery on our way to Boston Childrens Hospital.Kathleen also was born with Down Syndrome so this may have been working against her because the arteries in children with DS are smaller to begin with.She has been stroke free for 9 months now!!!!! Surgery and asprin seem to be working!!!By the way great to see your surgery went well and as always thanks for this site. Mary
Mary <>
ny USA - Saturday, February 08, 2003 at 20:33:25 (EST)

Joyce, I found this in a study I found by Dr. Steinberg..."Children with this disease usually have strokes, whereas adults have ischemic symptoms or intracranial hemorrhage. The natural history of untreated moyamoya disease is poor, with a 73% rate of major deficit or death more than 2 years after diagnosis in children and a similarly poor prognosis in adults"... Sounds like the longer you wait the worse it gets!
DJ <>
Wichita, KS USA - Saturday, February 08, 2003 at 14:11:09 (EST)

Our 11 year old has moyamoya we have seen the nurologist and had xrays done,they want to wait till the TIA,S slow down to perform the operation.Any body got any advice.
Joyce Stierwalt <>
Fort Worth, TXOur USA - Tuesday, February 04, 2003 at 10:17:07 (EST)

Hi Dj I am another aunt of Mandys..I have been trying to reach you via e-mail for weeks and it keeps bouching back.. I have done most of the research for the family and if it wasn't for you i would of still been in the dark..You are a true inspiration..It was only 4 days after Mandy's stoke that you put this web page together must be an angel Thank you from the bottom of mandys families hearts..
Renee <>
fairless hills, pa USA - Friday, January 31, 2003 at 20:15:57 (EST)

Hi DJ Thank you for giving us a place to find help and support. My niece Mandy was recently diagnosed with moya moya and her family contacted your Doctor at Stanford. Her first surgery is scheduled for Feb. 25th, 2003. Hope and pray she does as well as you did. Our continued thoughts and prayers are with you. God Bless you! Marlene
Marlene <>
Philadelphia, Pa USA - Friday, January 31, 2003 at 10:25:35 (EST)

Your Dad and I were talking tonight. Happy to hear thing have gone well with the Dr.s. I thought you had better taste than to allow old shooters with receding hairlines be photographed with you!! We want more shots of the nurses and some closeups if you dont mind. Call me, we'll go to the Crow's.
Steve Rist <>
Wichita, k USA - Thursday, January 30, 2003 at 22:43:23 (EST)

Hi DJ am glad you are doing so good !!!!! Love this site. You have done an exellent job !! also would like to mention that there is a moyamoya chat DJ I am doing pretty good since my fall (on my head--of course) had 5 staples out today and another CT, will get the rest of the staples out Saturday.. Lots of Love to all my MM friends.
Elaine Calvert <>
westerville, ohio USA - Thursday, January 30, 2003 at 21:39:58 (EST)

Hi DJ, I'm glad to hear that your surgery went well. I do not have "moya moya" but a very dear friend of mine does. She has found great comfort in your web site, and I wanted to just send a little "thank you" to you for giving her a place to go where people REALLY understand. Keep up the inspiring work!! Denise
Denise <>
Kingston, MA USA - Wednesday, January 29, 2003 at 18:20:19 (EST)

Hi, DJ Was really glad your sugery went well. Was wondering if anyone with moya moya has suffered a seizure. On 9/1/02 I had a seizure. I remember my right arm getting pretty numb and yelling to my husband to call an ambulance. The next thing I remember was being in the hospital. My doctor really dosen't no why I had it. He said it could of been old scar tissue from the tia's I had before. Iam know on Depekote for seizures which I hate.In the past I would just get numbness in my right hand and arm but it would go away. This scares me because I actually became unconsious, I was wondering if anyone else with moya moya has experienced this, They can email at if they have. I love the fact that I can even ask these questions. Kept up the great work with the website. Hats off to you. Mary
Mary Burns <>
East Bridgewater, Ma USA - Sunday, January 26, 2003 at 14:07:04 (EST)

Hey, DJ. I hope everything went well in California. Oh yeah, cool site. Garrett
Garrett Johnson
lawrence , Ks USA - Monday, January 20, 2003 at 15:24:53 (EST)

We are so grateful that you have come through another valley. I find myself feeling anxious knowing you were out in California, again, and praying for positive results. DJ, your family here in Kansas loves you very much and love the web site. This will be an encouragement and a source of strength for many. Take care of yourself and hurry home. GO JAYHAWKS!!!
Guy and Robyn
Fredonia, KS USA - Sunday, January 19, 2003 at 21:47:30 (EST)

Hi everyone! Glad to see that some of you have found the site! Looking forward to communicating with you more as I'm able to add to the information here. There is alot more I have to add to the site and will be doing that as I get back home next week and get settled in. As of yesterday, I'm out of the hospital. I'm back in a hotel room near Stanford and will be here until the end of next week. I have an appointment to have my staples taken out next week and will be going back to Kansas after that. I've put up some of the pictures from this surgery on my picture page. I will be moving some stuff around when I get back home but wanted you to be able to see how it went this week. I'm getting around like normal and everything is still WONDERFUL after the surgery!!
DJ <>
USA - Sunday, January 19, 2003 at 15:41:17 (EST)

You are an amazing person Deej! I am sure when you reach the "Pearly Gates" Many many moons from now; the man upstairs will have an important position for you up there....just put in a good word for me will ya. JSF! Love Jayne
Jayne Salters
USA - Friday, January 17, 2003 at 17:54:07 (EST)

It was great to see your web site. My son has TIA's for months a was wrongly diagnosed with MS. He then suffered a bad stroke effecting his left side. He was 26 at the time. He has had 2 operations one on both sides and is doing well. He just had a follow-up angiogram and it looks as though he is getting good blood flow. His neurologist works out of Methodist Hospital in Indianapolis and we have been very pleased. It is a great feeling to see your web site as I have tried for 3 years to get into some kind of support group to talk with other Moya Moya patients. They are hard to find and all I could come up with was updates back from 1999. Thanks, Sandi Lawler
GREENWOOD, IN USA - Friday, January 17, 2003 at 17:51:29 (EST)

You are my inspiration DJ! I am thrilled that things worked out so well for you once again! I will talk to you soon, but in the meantime, do as your mother says and stay in bed! Get some well deserved rest for soon it is back to the rat race otherwise known as LIFE! Love ya Buckethead!
Darlin' Lisa <>
Arlington Heights, IL USA - Thursday, January 16, 2003 at 02:50:43 (EST)

"Get back to bed, DJ. I keep trying to explain to you .. you've just had brain surgery?!?" Your mother!!! ;-)
DJ's Mom :-) <>
Weatherford, TX USA - Wednesday, January 15, 2003 at 15:31:42 (EST)

Hi, It's me again! Surgery went AWESOME yesterday! I think they rolled me out last night 8:30 PST I'm laying in my bed in ICU right now making this post. I'm in virtualy NO pain and will be up running around the hospital a little later on this morning. Should be in a "normal" room by noon or so. Thank you for your thoughts and prayers! I'll have some new pictures up this weekend.
DJ <>
USA - Wednesday, January 15, 2003 at 09:24:16 (EST)

Well, today's the day. I check into the hospital in just about two hours. Surgery is at noon PST. Should be fun! Hope to have as many pictures and video up on the site soon. Thank you for all of the emails telling me you're praying for me. I'm sure I'll be fine and I'll put some posts up on my recovery process as soon as I get out of the hospital (probably Sunday). See you soon!
DJ <>
USA - Tuesday, January 14, 2003 at 11:41:17 (EST)

My 4.5 year old daughter, Cara, has been diagnosed with MoyaMoya...she has not had any strokes or seizures yet but has slight involuntary movements of her left arm and leg. They noticed it two years ago but it went away and returned just recently...the MRA shows that all her arteries are abnormal...she will have the angiogram soon...and from there we will decide where to take her for her surgery.
carol mcwilliams <>
Paradise Valley, AZ USA - Friday, January 10, 2003 at 03:02:47 (EST)

I forgot to mention that my daughter is 5 years old.She's a real "trooper"!
USA - Wednesday, January 08, 2003 at 12:26:29 (EST)

My daughter was diagnosed with MM one year ago. She has had several strokes. She had surgery at Boston Childrens Hospital In April.She has been stroke free since surgery. Her last stroke left her paralised on her left side. She is getting stronger everyday . She can actually take some steps on her own now.Her left arm is a bit slower getting movement back.
Mary <>
USA - Wednesday, January 08, 2003 at 11:45:38 (EST)

I was DXed with moyamoya at age 48, after having dozens of strokes for over a year. Had my first surgery Dec. 31, 1998 and second surgery Aug. 22, 2000
Elaine Calvert <>
Westerville, Ohio USA - Friday, January 03, 2003 at 12:01:54 (EST)

My wife Carla was diagnosed with moya moya a couple of years ago and had a double EC/IC bypass on the left side of her brain in Dec. 2000. We share our experience at . I'm glad there is finally a dedicated site for those that suffer with moya moya. Thanks, DJ
Jason & Carla Peters <>
TX USA - Thursday, January 02, 2003 at 22:06:51 (EST)

Looks like I've got stuff up and fairly operational. I hope this guestbook allows folks from around the world to contact each other electronically. If there's anything you would like to see on this page, please don't hesitate to email me with your requests. Hope you like the new site!
DJ <>
Wichita, KS USA - Thursday, January 02, 2003 at 21:25:11 (EST)





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