Moyamoya.com
Internet support for those diagnosed with Moyamoya Disease

Guestbook Archives from Jan 2006 - Dec 2006

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I was told four years ago I had moyamoya. Had by-pass surgery two years ago. I am 54 years old
Sharon Garthoff <SKAY2449@aol.com>
Evansdale, Iowa USA
Sunday, December 31, 2006 at 22:44:16 (EST)

My son Tyler is 3 months old and suffered 4 strokes by the time he was 5 weeks old. We noticed because he started having siezurs. He has been diagnosed with possible MoyaMoya Disease at Childrens Hospital of Philadelphia. WE will be going to Boston to see Dr. Scott in the very near future. Anyone who would be willing the share any thoughts please email us. Thanks
Amanda <mandyz94@verizon.net>
Aubrun, PA USA
Thursday, December 28, 2006 at 11:59:46 (EST)

Hello Everyone. My name is Jeff, my wife Abbe and I have a 7 month old Cash. On December 21st. he had a stroke and we ended up at the University of Chicago Comer's Children Hospital. Dr. David Frim has been tenatively diagnosed with moyamoya syndrome(do not know if different than disease). Cash will be having surgery in the near future and want to get in touch with other people who have toddlers or children with the disease. Good and bad, also if anyone has had surgery by Dr. Frim, please email jharpp@sbcglobal.net my wife and I are overwhelmed by this rare, extremely rare problem. Thank you everyone out there. We do not know what to expect. Jeff Harpp
Jeffrey Harpp <jharpp@sbcglobal.net>
Merrillville, I N USA
Wednesday, December 27, 2006 at 17:48:58 (EST)

Hi my name is denise and i was diagnosied in april of 2001 my doctors don't seem to take me seriously. i need some help to find out what i can do to make them understand that the pain in my muscles and bones hurt so bad and the migraines and headaches are starting to ware on my personal life. I have lost two boyfriends because of this illness and i have a new boyfriend now who i love very much and i don't want to loose him as well. He is very understanding and loves me and takes care of me when i am sick. If you have any information for please email me.
denise torsney <neecieree@yahoo.com>
avon park, fl USA
Tuesday, December 26, 2006 at 21:39:39 (EST)

Great website! Will keep you all in my prayers.
Deb Hawpetoss <debhawp@insightbb.com>
Springfield, IL USA
Thursday, December 21, 2006 at 20:52:02 (EST)

Bless this website and all who have shared their stories. Two years ago, after years of being told that our seventeen-year-old daughter suffered from anxiety disorder and migraines she was finally diagnosed with MoyaMoya at Vanderbilt children's hospital in Nashville, TN. Heather is scheduled for the EDAS procedure January 10th at Vanderbilt. The surgery will be performed by Dr. Robert A. Mericle the Director of Cerebrovascular and Endovascular Neurosurgery. If you suspect that you or a loved one has MoyaMoya demand a CT scan and then do your research. Locate a neurosurgeon that has experience with this disorder. Educate the health care facilities in your area. We have made it our mission to educate our community about MoyaMoya. We even had t-shirts made that say "MOYA MOYA - LOOK IT UP." Many physicians have not heard of MoyaMoya which is why so many children are misdiagnosed. As with any rare disorder/disease it will be up to the parents to educate and support other parents and those afflicted will need to reach out to one another for strength. Just know that you are not alone and I will keep you in my prayers. -Kim
Kim Frick-Welker <kfw43@frontiernet.net>
Cookeville, TN USA
Thursday, December 21, 2006 at 18:14:57 (EST)

Hello, I just recently got married and my husband seems to be having a lot of the symptoms described here. He did go to a neurologist on Friday, who kind of blew him off and told him that he has TIA's and that it appears that some of the vessels in his brain are blocked. He put him on aspirin and sent him home. I'm worried because he has numbness in this left arm and hand on a daily basis and also appears run down and tired. If anyone could give me any more info on Moya Moya, I would greatly appreciate it. I want him to get a second opinion somewhere, but would like more info. Thanks everyone and God Bless!
Jennifer Andreoli <jenlopp@hotmail.com>
PA USA
Monday, December 18, 2006 at 10:39:09 (EST)

Hello, I had my first introduction with Moyamoya in April 2005. At the time I did not know what the diagnosis was other than strokes. I am an MRI tech at a small hospital in Kentucky. The patient came back in for follow up as well as some new symptoms. Her symptoms were the same as DJ's. She told me the name Moyamoya and I had to research it for my own curiosity and for future patients. Great site
Steve Moffett
Shelbyville, KY USA
Friday, December 15, 2006 at 13:16:25 (EST)

hello to all my daughter suzzan had her surgery on the 13th of dec up in stanford by dr,steinberg and it went well im so happy and my whole family is so excited she should beable to go home by sunday are monday ,thanks for all the support i get from you all .im her dad steve
steve <crazyhorse5266@aol.com>
ELKGROVE, ca USA
Thursday, December 14, 2006 at 20:35:27 (EST)

hi my name is lydia. i am 8 and a half and live in the midlands. i was diagnosed with moy moya 4 years ago. i have had two tias and had surgery on both sides of my brain. i ama happy little girl who is living life too the full . i would like too get in touch with any other children who have moya moya, thanks for listening. lydia and hilary
lydia
USA
Monday, December 04, 2006 at 14:54:55 (EST)

After two years of dizzy spells and headaches, I have been recently diagnosed with Moya moya disease. This site has been very useful in answering some of my questions and educating me so I know what other questions to ask my doctor! Thank you DJ!
Kimberly Sanberg <geofandkim@yahoo.com>
Aliso Viejo, CA USA
Thursday, November 30, 2006 at 01:19:46 (EST)

Hello, I have been suffering from moyamoya since 2004 but not until yesterday 11/27/06 I was actually told of the diagnosis name. I am 35 years old and have gone through angioplasty surgery with no success. I was referred to Dr. Vanefsky and saw him yesterday. He has ordered a spec scan. I will know by Dec 27th if I need surgery. This is all new to me I am scared, I dont know what to expect and want to live a long life with my baby....well she is actually two years old! My faith in God keeps me strong, I appreciate any feedback from anyone, please feel free to email me inbarragan@ucsd.edu. Thank you DJ for this web site!
Irene <inbarragan@ucsd.edu>
El Cajon, CA USA
Wednesday, November 29, 2006 at 01:53:11 (EST)

Hi I am a 25 yr old single mother with moya moya entering her first surgery on dec 7 of this year. If anyone would like to communicate with me I,m available at jlove8116@yahoo.com
jennifer h <jlove8116@yahoo.com>
middleburg hts, oh USA
Tuesday, November 28, 2006 at 22:13:53 (EST)

hello everyone my name is tammie and my little girl was dx at the age of 14 months she has a total of 10 tias she had her surgery on the right side right before her second birthday in boston by dr michael scott his staff and hisself was so great they had the best bed side manners a tried to help us in any way they could the morning that she was to have surgery they gave hr something to make her sleepy before they put any needle in her they called every few minutes to let us know what was going on thy was nothing that i was unhappy about he will answer any question that you may have even after yopu get back home you can call him and he will return you call you cant get no more than that. but anyways she had surgery in 2001 and we are in are 1 year and 21/2 months tia free praise the lord he is a allsome god and i thank him everyday for her and all he has done for her and by the way she is a straight a student but if you should need to ask any questions feel free to email me any time and dj thank you sooooooo much for this web im hoping i will get to meet you someday and god bless you to for all you have done thanks .
TAMMIE <BRUZZERMTJS@AOL.COM>
SPRINGVILLE, AL USA
Tuesday, November 28, 2006 at 19:20:39 (EST)

I am 25 and ready to have my first surgery dec 7th
Jennifer Hamu <jlove8116@yahoo.com>
cleveland , oh USA
Tuesday, November 28, 2006 at 10:24:40 (EST)

Neww member to this have moya moya and recieving my first surgery on december7
jennifer <jlove8116@yahoo.com>
middleburg hts, oh USA
Monday, November 27, 2006 at 19:18:54 (EST)

I have a recent case and I go to publish in the Internet. It waits. Thank you. Edson Zerati, MD www.zerati.com Brazil
Edson Zerati, MD <edson@zerati.com>
Votuporanga, Sao Paulo Brazil
Thursday, November 23, 2006 at 19:07:42 (EST)

DJ Hi my nam is Michelle Angel and my mom was also diagnosed with moya moya. I read your story on how you used to get numbness in ur fingers. Well I also have been experiening numbess off and on everyday but now my fingers have been numb all day. I'm too scared to go to the doctor cuz I don't want to know if I have it. I called my friend who's an RN n she also told me that it might be a pinched nerve what do I do
Michelle Angel <angelloveattractive@yahoo.com>
Cincinnato, OH USA
Friday, November 17, 2006 at 18:34:22 (EST)

Hi i got Moya-Moya too since 2001
Angela <oylerangie@yahoo.com>
savannah, GA USA
Thursday, November 16, 2006 at 05:37:07 (EST)

hello there my name is steve i posted a note before and i just wanted to let everyone no .my daughter is haveing her first surgey dec 13 at stanford hospital.only on the left side the left side is 98 percent and right side is 53 percent well i just wanted to let everyone no and for the one's that been keeping in touch with me on a daily basses thanks you been a comfort especailly elaine thanks a bunch
steve <crazyhorse5266@aol.com>
ELKGROVE, CA USA
Thursday, November 16, 2006 at 00:41:56 (EST)

Hi my name is Jessie I am 24. I too have Moyamoya. i had a stroke when I was only 8mons. I had TIA'S while I grew up which means mini strokes, so, my doctor thought it was best that I have surgery. I had Brain surgery back in 96' The doctor I had was great. He made me feel right at ease. His name was Dr Micheal Scott. It only took him eight hrs for the whole thing. I was able to be taken off the medicine I was taking so here we are now in 2006 and I am still here I went to bosten to have surgery and I am thankful for that because when birthdays come around I don't of a another yr older I think another day of the journey that I am on. If anybody has any questions don't be afraide to ask
Jessie <Kittell101@hotmail.com>
New Franken , Wi USA
Wednesday, November 15, 2006 at 14:57:42 (EST)

Dear dj.My name is paul,my son was born 7 years ago with Down syndrome.He had two thirds of small intestine removed,open heart surgery,rsv pneumonia, he had a stroke and was diagnost with Moya Moya and bood vessals from his neck were planted on his brain.He spent 3 years in the hospital,now stays in a special home.This was a very hard period in my life ...He is ok for now.I bid you peace,yours truly,Paul Jankowski.
paul jankowski <Pjankowski@sympatico.ca>
Montreal, Que Canada
Tuesday, November 14, 2006 at 22:36:52 (EST)

Hi! We have a son who was diagnosed with moya, moya in 1990. He is now 17 yrs old and his strokes have stopped. He had 4 major strokes. 2 on @ side.He is dependant for all his needs. but he is a very happy young man who knows his surroundings. I would not think he is in his grade level though, although that is a bit hard to know. just wanted to say hi and God Bless You!!-The Schrocks
Bill and Brenda Schrock <billandbrenda88@netzero.com>
Amherst, VA USA
Wednesday, November 08, 2006 at 22:25:16 (EST)

I think this is a great site. I plan to learn all I can to help others.
Joanna Franklin <jofranklin16@comcast.net>
Indianapolis, IN. USA
Tuesday, October 31, 2006 at 16:00:01 (EST)

Hello everyone my name is Jamie and I am 23. My mother passed away a year ago yesterday at the age of 53 from MoyaMoya. She had a total of 3 strokes in 3 months starting in 7/2005. It wasn't until the second stroke that the Doctors discovered that she had moyamoya, at that time they said that she wasn't healthy enough to go ahead with surgery. She had her final stroke on 10/20/2005 and unfortunatly did not make it. It's a terrible condition and its unfortunate that there isn't enough information on the condition, but from reading all of the postings I do have hope for the future. I have hope they they will be able to do more research and hopefully find a cure. I believe that if it was caught a few years earlier she may have had a chance, but I cannot dwell on that. Instead I pray for everyone and their families and wish everyone the best. We now live in a day and age where we have extemely intelligent doctors and are so advanced in medicine then we were years ago, So even though we are only a small group of people who have had to deal with this, there is hope. This posting is basically for everyone who has been diagnosed with the condition and are doing well, because that lets me know there is hope for the future.
Jamie <Starlig749@aol.com>
Crystal Beach, FL USA
Thursday, October 26, 2006 at 23:18:38 (EST)

Hi all i'm 25 years old and was diagnosed with Moyamoya in March of 2006. I have never had a stroke or TIA(i don't think) I just started to get headaches, had an MRI, Moyamoya. My neurologist says that my carotids are completely gone 100% gone and that surgery is too risky since all it would do is maybe provide more blood flow in turn maybe providing more function. Since ive never had any other problems, I am a registered nurse working in an ICU in Mississippi, that right now I don't really need more function. They took me off the birth control pill, put me on asprin, zocor(I have low cholesterol, but strengthens arteries) accupril, toprol I also have Type I Diabetes since I was 10 years old, and Thyroid disease I was just wondering what any of yall think about this? When they told me about this I thought I should be on the show "House" Thanks for the site
Liz Smith <lizmushko@hotmail.com>
Hattiesburg, MS USA
Thursday, October 26, 2006 at 20:43:15 (EST)

Roz, My 23 year old daughter Sarah has recently been diagnosed with MoyaMoya. She is to be admitted to the National Hospital in London in 2 weeks for further tests. Professor Brown & Miss Grieve will assess her & then decide on the appropriate action. I would be grateful for your e-mail address so I can ask you about your treatment, the hospital etc. Naturally my daughter is very anxious and any comments from fellow suffers my help her. My e-mail address is hallamshire06@yahoo.co.uk Mant thanks,
Steve Brownhill <hallamshire06@yahoo.co.uk>
UK
Thursday, October 26, 2006 at 06:42:34 (EST)

Hi Matthew, I'm the girl you bumped into, after your appointment with Professor Brown @ NHNN on 28th September. I was the next patient to go in. Feel free to PM me. I'm on the message board as Roz. Regards, Roz
Roz
UK
Monday, October 23, 2006 at 13:02:31 (EST)

Hello. My name is Aki Masumura. Had a major stroke on June 21, 2006. I had a major stroke (Left) and found out had Moyamoya. Apparently, I had a minor stroke from several years on Right side. I had NO CLUE had a stroke. Turned out to have aphasia. In August, my doctor's (Dr.Liu and Dr. Morita - Queen's Medical Center) recomended me to surgery. I will have the surgery on 10/25/06. On 9/28, I had a minor stroke (TIA). Regardless, I had a pre-op on 10/18 and everything is good to go. My heart is strong, lung is clear, etc. (My goodness, I use to smoke alot before!) Well anyways, I don't know if anyone is writing but I will write again.. 5 more days for surgery.....
Aki Masumura <ellesse808@yahoo.com>
Kailua, HI USA
Friday, October 20, 2006 at 18:26:57 (EST)

My name is Rebecca Jones, I was diagnosed with Moyamoya Disease in 1997. I was a freshman in high school.
Rebecca Jones <Rhj926@yahoo.com>
Birmingham, AL USA
Friday, October 20, 2006 at 01:19:52 (EST)

P.S - Im sorry that i missed that convention on MoyaMoya in Orlando... there's never been one in the UK as far as i know. Let me know when the next one is please, and i might just consider flying over!
Matthew Baird <dothebeatbopbailie@hotmail.co.uk>
Portadown, Northern Ireland
Wednesday, October 18, 2006 at 13:16:16 (EST)

Hi. Just was browsing and i found this site. I was diagnosed with MoyaMoya in 1999 when i was 10, and had the surgery in Great Ormond Street Hospital for Sick Children in London. Im doing well now and plan to go to university in a few months! Glad to hear everyone else with it is doing well!
Matthew Baird <dothebeatbopbailie@hotmail.co.uk>
Portadown, Northern Ireland
Wednesday, October 18, 2006 at 13:11:43 (EST)

Since my surgery back in Jan i have started now taking tegratol for seizures,also i have had a total of 11 strokes. And also dealing with the news from my Lung doctor saying that i can't have anymore surgeries because of the damage that was done too my lungs during and after the surgery..So now i guess i will roll the dice once more and play with "Lady Luck"once again. Some days i feel like giving up but then again i have 2 beautiful boys and planning my wedding for May 16,2007 and i can't give up. I just keep making jokes and keep laughing that helps alot.
Laura Stevens <hell_bytch_1@yahoo.com>
Waterville, ME USA
Tuesday, October 17, 2006 at 17:36:39 (EST)

I'm 46 years old and I've just been diagnosed with moyamoya. I know nothing about this condition. Are there any doctors around the St.Louis area that have any experience with this condition? If anyone knows about them could they let me know? Thanks.
Audrey Carden <audreycarden@yahoo.com>
Chaffee, MO USA
Tuesday, October 17, 2006 at 08:47:10 (EST)

I was Dx with moyamoya in 2005 and doing well. No surgeries at all and not sx. Thank God! Is moyamoya genetic?
SHANNON DENISIUK
MERRILLVILLE, IN USA
Monday, October 16, 2006 at 13:53:50 (EST)

I was taken to the hospital in 1982 after walking strangely for moths.After a birthdayparty the previous evening,where no alcoholics where given to me,I waited for the bathroom door to have a quick leak before going home.After a few minutes waiting,I heared someone unlock the bathroomdoor and I turned around and fell to the floor.I had a brainstroke on the right side of my brain.I was driven home by a friend,who pulled me up to the third floor and layed me on my bed.I thought the paralazis would be over the next morning and I could go for my soccermatch.I WAS WRONG.The next morning I was taken to hospital,where my cigarettes where taken as was my lighter.I stayed in hospital for five weeks in which I was paralized on my left side for about 2,1/2 weeks.They did many tests and by one I was injected with a liquid to find out what was the matter with me.As from february 7th 1982 I've got diagnozed with Moya-Moya by doctor Peter Portegies,neurologist.
Fred Koolhaas <adamoffshore@hotmail.com>
Amsterdam, NH Netherlands
Sunday, October 15, 2006 at 02:53:11 (EST)

Thank you soo much for your website! I have spnt so much time thinking I was the only one around with this ailment but now I see I am not.
Jaime Holland <ilovelindsey@peoplepc.com>
Pittsburgh, PA USA
Sunday, October 08, 2006 at 20:11:55 (EST)

Sorry to hear that i missed the gathering in orlando, what a shame i live so close by , does anymore know when there is going to be another one? maybe in the florida location? Thanks
Andrea <Ang6006@yahoo.com>
fl USA
Tuesday, October 03, 2006 at 14:21:00 (EST)

Hi, my name is Michelle and my mother Lisa was diagnosed with Moya Moya when I was 8 years old. I'm now 19 and she's 41.They said that she can't have the operation because they're afraid that she'll have a stroke on the operating table. She is partially paralized,she has tunnel vision, a speech impediment,she has seizers and strokes often. My 22 year old sister is now taking care of her, along with her 3 children. Without the operation is their a chance that maybe one day she'll be better? Like I said the doctors say the operation is too dangerous but sometimes she says she still wants it. Should it be up to her or the doctor? Confused young lady who sends the best wishes to everyone. And DJ thank you so much for opening this web site you are such an inspiration.
Michelle Angel <angelloveattractive@yahoo.com>
Cincinnati, OH USA
Sunday, October 01, 2006 at 00:14:41 (EST)

Thank you for your site, our son Noah was just diagnosed with Moya Moya. We found your information and it has helped us understand the disease. We also appreciate the info on the site. We hope to keep you in tune with our son's progress and how the surgery goes. I do have a question for you as far as the surgery goes, does it require going through the skull or is it all through the arteries? Once again the saenz family thanks you for the joyful and helpful information.
david, maria, noah <penltybx17@yahoo.com>
west covina, ca USA
Saturday, September 30, 2006 at 11:36:51 (EST)

My mom, age 77, was diagnosed with mm in 2003. Surgery was not recommended at that time. Her cholesterol level was high and her blood pressure was also high. She started taking lipitor and blood pressure medication. Her health improved and her strength also improved. However, the past 2 months, and lately, the last two weeks, her conditioned worsen very fast. She lost control of her right hands/arm and her speech and short term memory has rapidly deteriorated. Please email to direct us to a specialist, who has treated seniors with mm.
mary <myrnakarlins@yahoo.com>
The Woodlands, tx USA
Thursday, September 28, 2006 at 23:05:54 (EST)

My daughter was diagnosed with moyamoya 3 years ago now. We looked all over the place at that time trying to figure out what to do. We finally got in touch with a Neurosurgen in Seattle, WA. We went and had several more test done and finally had surgery on both sides of her head. She is now doing well taking 81 mg of asprin a day.
Holly Hardin <mikeys_girl94@hotmail.com>
Orofino, ID USA
Thursday, September 28, 2006 at 00:49:35 (EST)

I do not know you. I do not suffer from Moya Moya. But I do suffer from another rare disorder that also was very hard to find. I must thank you for creating such a website were others can reach out and find each other. Websites like this are a GODSEND! Please keep up the good work! Never give up hope!
Jeremy Sheehn
Southgate, MI USA
Monday, September 25, 2006 at 21:25:03 (EST)

Hello, my name is Joerg. My 12 years old daughter Lea has an operation two years ago in Zurich/Switzerland by Dr.med Nadia Khan (she's amazing). What I want to know, is it normal that she has headaches like migraineattacs for five or six times since has her surgery? My wife and me were afraid about that. Otherwise she`s doing very well. If you have any information or just need to talk please e-mail me
Joerg <joerg.garbitz@volzotan.de>
Germany
Tuesday, September 19, 2006 at 06:03:37 (EST)

Voor info in Nederland kunt U mij kontakten. For information in Holland contact me.
Fred Onrust <fred_onrust@yahoo.com>
Alkmaar, NH Nederland
Monday, September 18, 2006 at 18:26:34 (EST)

Hello my name is andrea and i have moya moya, 16 years ago i had an operation done , had mini stokes few months after but nothing serious. It's been 14 years since any stokes at all ,i am doing remarkably well. my heart goes out to everyone here suffering or in need of answers and have so much questions. I am willing to share what i know . Bless you all
Andrea <Ang6006@yahoo.com>
FL USA
Monday, September 11, 2006 at 14:38:13 (EST)

My husband had the surgery for MoyaMoya about 11 years ago. He is doing great no problems! (thank God) He had it done at I.U. Medical Center in Indianapolis Indiana, Dr. Pritz was the doc that done both of them! If you have any questions or just need to talk please e-mail us.
Jeri Sue Henico <tylerdh2004@yahoo.com>
USA
Friday, September 08, 2006 at 21:21:27 (EST)

I guess this story might be heartbreaking for alot of you, however somewhat maybe comforting due to the fact that the person I am about to talk about is my Mother. In June of 1994, my mother was diagnosed with MoyaMoya Disease, which is what is was called then, not MoyaMoya Syndrome. At the time I was attending a College in the state of Michigan. While she was in Miami,Florida. She had a mini stroke, which in medical terms it is called(T.I.A). A week later she had a major stroke which caused a hospitalization at Jackson Memorial Hospital. While in the hospital, they found her Left Carotid artery 75% occluded and her right carotid artery 90% occluded. Physicians gave my mother no hopes. Within hours she went from slurred speech but still alert, to a coma and then a vegetative state, Following 6 months later passing on.I had no chance to even get to understand what MoyaMoya was,and she was already gone. My mother was only 40years old. And there was not one doctor that I would ask questions about this syndrome that knew absolutely nothing about it. I was 20yrs old when I lost my beautiful mother to this disease. I wish they had the technology there is now, back then,because I know for sure she would have still been alive now.You should consider yourself very fortunate. Thank everyone who has not given up and continued to research this illness for our future kids, friends and family. GOD BLESS YOU FOR THAT. Yours Truly, Zoraida
Zoraida Fernandez <vorimedi@aol.com>
Tampa, Fl USA
Friday, September 08, 2006 at 18:06:45 (EST)

Hello to We are from the Cleveland Ohio area. My daughter was diagnosed after putting up with 25 years of numbness and headaches along with all the fun of growing up with classmates making fun and not understanding currently 25 she has 2 young boys and much more important things to be concerned about. She was diagnosed by UNiversity hospital and after a diamox test it was suggested that we get a second opinion from DR Rasmussen from the Cleveland Clinic. Does anyone out there have any comments about having the surgeries performed by a Good Micro-brain surgeon? I would apreciate any comments.
Mike Hamulak <mikeh@ajrose.com>
Amherst, oh USA
Tuesday, September 05, 2006 at 11:34:57 (EST)

Well, my name is Nathen and I was diagnosed with Moyamoya when I was 16, had my surgery right after they found it at O.H.S.U. when I was 2and a half I was dianosed with A.L.L. acute lymphoblastic leukemia and it came back on my 15 birthday, only it was in my spinal cord, wich ment we had to do Radiation this time, well after radiation I started to have weird feelings in the right side of my face like it went numb and I couldn't talk, then my right arm would go numb, we didn't know what it was, well I spent a week in Dhornbeckers childrens hospital and nothing happen as we were on our way out the door figuring we spent all of it up there for nuthing I had a what we'll call Attack and that's when we found out that I had Moyamoya, It's scary lerning to live with it and I still have attacks every so offten and I was just told by a doctor that I have a heart murmur, I'm tired of my life going to crap that's why I'm here. Hopefully I can work through this.
Nathen Parker <trailer_trash01@hotmail.com>
Reedsport, OR USA
Sunday, September 03, 2006 at 22:56:36 (EST)

Hello We just found out that for 25 years my daughter was being treated for migranes ans seizures yet she was just diagnosed with MOYAMOYA we are in the latter discusions with the local medical people at the University Hospitals and the Cleveland Clinic looks like surgeory is the eventual outcome and we just need to be clear on what and how and where. spooky feeling being a father and finding out that your daughter has MMD Any comments
Michael Hamulak <mikeh@ajrose.com>
Amherst, oh USA
Thursday, August 31, 2006 at 15:49:41 (EST)

Our daughter, who has Down syndrome, was diagnoised with Moyamoya at the age of 22, by Dr. Stanley Appel in Houston TX. In 1997 she had surgery (with Dr. Robert Dauser) for revascularization - on each side 6 weeks apart. She has done extremely well for several years. Most recently she seems to be studdering, sleeping an excessive amount (2-4 hour naps plus 10-13 hours sleep at night), having difficulty finding the right words to express herself, her hands shaking, and most recently fainted. The fainting problem was how we discovered that she had a problem to begin with! Has anyone else experienced a "reoccurance" after their revascularization? Any then?
D. Topp <topp@xanadu2.net>
Harlingen, TX USA
Tuesday, August 29, 2006 at 21:42:22 (EST)

Hi everyone! My name is Evelyn and I'm 21 years old. I was diagnosed with Moya Moya when I was 6 1/2 years old. I had two corrective surgeries (one on both sides) at age 7 at Boston Children's Hospital under the care of Dr. Scott (who is amazing!). Since then I have had no problems and went on to be in advanced classes in high school and I recently just graduated from the University of Georgia with over a 3.0 GPA. I would be happy to talk with anybody who needs to. I hope that my story can let kids and parents know that while what we have is rare and kinda scary that life with Moya Moya can be quite fruitful!
Evelyn Veasey <shippe4702@aol.com>
Cumming, GA USA
Saturday, August 26, 2006 at 22:07:58 (EST)

My mother was diagnosed with this when I was six and started having strokes when I was eight. I had no idea what was wrong with her, or why she got sick. She has had moya moya for about ten years now. I still don't understand the disease very well, even though I am almost 18, but it is great to finally find a site that explains what this stuff is and to know that there are other people.
Kaity
Friday, August 25, 2006 at 19:33:46 (EST)

My wife has been diagnosed with Moya Moyaand have had tests run at St . Luke's in Kansas City, Mo.We go back on Aug.31. Just need to get some info from someone who has been through the surgery.
Rick Hubbard <lizzcatz@centurytel.net>
Amazonia, Mo USA
Wednesday, August 23, 2006 at 00:01:34 (EST)

To Adreanne from San Diego. Hey Adreanne. My name is Janet Bishop and I broke my leg in Dec. 2005 and didn't know how I broke it and then I was diagnosed wiyh moyamoya in February. I went to Stanford University to Dr. Steinberg and I live in Illinois and you live in California. so please contact Dr. Steinberg and myself. My e=mail address is janetjbishop@prodigy.net. And guess what. I'm ahhh 59 years old and dont't listen to wrong advice,get in touch with Dr, Steinberg hey I did I had surgery on both sides. I'm older then your mom .and hey I'm around writting you to e-mail me. So please send me an E-Mail. Love, Janet Bishop
janet bishop <janetjbishop@prodigy.net>
Lake Villa, Il USA
Monday, August 21, 2006 at 22:04:34 (EST)

Hi DJ, I'm looking for any family in the Phoenix, Az area to start a small support group for both people with mm and there family members. if anyone interested let me know.
karen clark <skclark1@msn.com>
phoenix, ax USA
Tuesday, August 15, 2006 at 09:34:14 (EST)

Hello, My mother was diagnosed with Moya Moya in January of 2006. She is 56 years old. Since being diagnosed (after a stroke in December of 2005) she has had an additional stroke and heart issues. She had surgery for a pacemaker 1 month ago. She has been advised that due to her advanced years, surgery is not an option. I have searched the message boards for people that have been diagnosed after 50 but was unable to locate any postings. As I am sure everyone here understands, this is a very difficult time for our family. Does anyone have any information on diagnosis after 50? Thank you.
Adreanne <laserena@huntpacific.com>
San Diego, ca USA
Friday, August 11, 2006 at 14:41:45 (EST)

hello my name is steve and i have a 20 year old daughter that be dianossied with a brain aneurysm.and they did more test yesterday 8-7-06 a mri and a akg and they found another aneurysm on the right side also so no she has 2.then they told us they found another disease wich is moya moya on her left side ,we are so hurt and confused my daughter is special ed so it hard for her to understand somethings on what we talking about if i make the choice for her to have it done and if something goes wrong how will my family feel towards me and what are the risks please help
steven olvera <crazyhorse5266@aol.com>
Elkgrove, ca USA
Tuesday, August 08, 2006 at 11:26:10 (EST)

Our 14 month old grand-daughter was diagnosed with Moyamoya in November 2005 and had surgery March 28, 2006 in Boston. Thankfully, we are seeing improvements every day. One of my concerns is that since it has only been 4 months since her surgery, is it unusual that she still is not sitting up by herself or crawling? She's trying, but she still struggles. I guess I'm just too anxious. I would appreciate any input.
Donna Semler <DBSEMLER@aol.com>
Keedysville, MD USA
Wednesday, August 02, 2006 at 12:53:18 (EST)

hell again if you would like to talk to someone with moya moya please email me at sweetbaby@entermail.net
Anna
Orefield, PA USA
Wednesday, August 02, 2006 at 02:20:20 (EST)

I have moya moya Krist you can email me , i have had it since 1994 many years and also had 3 surgeries Anna
Anna Martz
Orefield, PA USA
Saturday, July 15, 2006 at 19:25:43 (EST)

I put a message on here on July 8 2006. My email address was wrong. I put the right one on here now. I would love to hear from anyone with moyamoya. I have it. I have had it for 8 years. I have had surgery on both sides of my brain. (sta- mca) The first one was in 1999 and the second one was in 2000.
Kristi <ckma1@alltel.net>
tunnel hill, ga USA
Friday, July 14, 2006 at 22:02:41 (EST)

please if any or all of you would like to email me what you have gone through i am there for you you can even im at RJsAuntAnna i need some friends who know what i am going through email me at sweetbaby@entermail.net please i would be happy if i got some new friends here
Anna Martz <sweetbaby@entermail.net>
Orefield, PA USA
Sunday, July 09, 2006 at 22:50:06 (EST)

if you think your child or children have moya moya get them seen . Boston Children;s Hospital does great work I have 3 surgeirs done i am so glad i found this site can you help me with how to chat
Anna <sweetbaby@entermail.net>
Orefield, PA USA
Sunday, July 09, 2006 at 22:30:36 (EST)

I am a person with moya moya and wuld like if some of you can email me and tell be how it makes you feel, i just do not like it .
Anna Martz <sweetbaby@entermail.net>
Orefield, PA USA
Sunday, July 09, 2006 at 06:44:04 (EST)

thank you for this website!!!!! i feel so grateful that i have a place to come so i don't feel so abnormal. Thanks everyone!!!!!!!
andrea <ang6006@yahoo.com>
fl USA
Saturday, July 08, 2006 at 21:05:28 (EST)

I have moyamoya. I was diagnosed in 1998. I have had surgery on my right and left side of my brain.
KRISTI <CKMA1@ALLTEK.NET>
TUNNEL HILL, GA USA
Saturday, July 08, 2006 at 17:26:01 (EST)

MY SON IS AGED 2YRS AND 4 MONTHS. ON 7TH JUNE WE SUDDENLY FELT THAT HE LOST SIGHT FOR A PERIOD OF 3-4 MINUTES ( SIGNS OF RUBBING HIS EYES DURING THAT TIME ) BUT REMAINING CONSCIOUS DURING THAT PERIOD. THIS FEATURE HAS NOT REPEATED SINCE THAN. THE CHILD IS NORMAL SINCE THAN. THIS PARTICULAR INCIDENCE WAS NOT SEEN EVEN EARLIER. HIS GROWTH IS NORMAL. HIS WEIGHT IS 11 KGS. THERE ARE NO SIGNS OF FEVER OR HEADACHE. I AM A RESIDENT OF INDIA. MY EMAIL ADDRESS IS knkabhinay17@rediffmail.com STUDY PROTOCOLS :- MR ANGIOGRAPHY OF BRAIN HAS BEEN PERFORMED USING THREE DIMENSIONAL TIME OF FLIGHT MOTSA TECHNIQUE WITH MTC. RAW IMAGES WERE OBTAINED FIRST AND SUSEQUENTLY PROCESSESD USING MAXIMUM INTENSITY PROJECTION TECHNIQUES ON ADVANCED WORK STATION AND 3D VOLUMETRIC DATA WAS RECONSTRUCTED. PROCESSED IMAGES WERE ROTATED AT DESIRED INCREMENTAL ANGLE IN MULTIPLE PLANES. FINDINGS :- The study reveals diffuse significant attenuation in flow signal of left ICA ( cervical and intrapetrous and cavernosal segments ) With irregular contour and approx. 80 85% luminal signal loss due to vasospasm and luminal occlusions and stenoisis. There are multiple serpigenous basal telangiectatic collateral chaanels involving bilateral medial and lateral lenticulostriate branches of A1/M1 ( horizontal ) segments of the ACA`s/ MCA`s and posterior thalamoperforating and thelamogeniculate and medial and lateral posterior choroidal artery branches of the P1/P2 ( precommunicating / ambient ) and posterior pericallosal and splenialand parieto-occiptal twigs of P3 ( quadrigeminal) segments of bilateral PCA`s. There are collateral channels seen arising from the inferolateral and meningohypophyseal trunks and transdural collateral chhanels from the left middle meningeal artery. There are multiple serpigenous pial and leptomeningeal collateral channels across bilateral cerebal convexities. Division into both middle and anterior cerebral areteries is normal on right side. There is irregular and pruned appearance of the bilateral A1/ M1 ( horizontal ) segmentsof bilateral ACA`s/ MCA`s. Rest of A1, A2, and A3 segments of anterior cerebral artery is normal in course and caliber on either side. Rest of M1, M2 and M3 segments of bilateral middle cerebral arteries are normal in course and caliber. There is irregular contour and attenuated flow signal of bilateral P2/ P3 ( ambient/quadrigeminal) segments of PCA`s. Rest of bilateral verteblar, basilar and bilateral posterior cerebral arteries is normal in course and caliber. DIAGNOSIS : reveals diffuse significant attenuation in flow signal of left ICA ( cervical and intrapetrous and cavernosal segments ) With irregular contour and approx. 80 85% luminal signal loss due to vasospasm and luminal occlusions and stenoisis and similarmultisegmental attenuated flow signal of right ICA ( cavernosaland supraclinoid segments ) with approx. 60-65% luminal signal; vasopasm and lumainal occlusion / stenosis and serpigenous basal telangieactatic collateral channels involving bilateral medial and lateral lenticulostriate branches of the A1/ M1 (horizontal ) segmentsof bilateral ACA`s/ MCA`s and thalamoperforating and thelamogeniculate and medial and lateral posterior choroidal artery branches of the P1/P2 ( peduncular/ ambient ) and posterior pericallosal and splenialand parieto-occiptal twigs of P3 ( quadrigeminal) segments of bilateral PCA`s. FINDINGS ARE NON- SPECIFIC ; POSSIBILITY OF MOYA MOYA NEEDS TO BE CONSIDERED WITH UNLIKELY POSSIBILITY OF VARIED INFECTUOUS ARTERITIDES AND NON INFECTIOUS VASCULITIS AND MICROANGIOPATHY SYNDROMES TO NAME A FEW TO BE CONSIDERED AS DIFFERENTIAL POSSIBILTY. ADVISED : CLINICAL CORRELATION.
knkishore <knkabhinay17@rediffmail.com>
madhubani, bihar india
Wednesday, July 05, 2006 at 01:27:19 (EST)

To Jamie Venning in Canton, MI. I live in Novi. Contact me at email, potter01@peoplepc.com, to set up a chat or phone call. My name is Mie, and I was diagnosed last November when I was admitted to Botsford, transferred to Providence Southfield. Fessler is my doctor.
Mie Potter <potter01@peoplepc.com>
Novi, MI USA
Thursday, June 29, 2006 at 21:48:20 (EST)

Hi my name is Nicole and Im 16yrs old. I had surgery about three years ago for moyamoya and everythings been fine but i dont know if its just in my head that im sick again or if i really am. I dont know what to do , i really feel like its all in my head but my arm will go numb and sometimes my leg hurts. What should i do???
Nicole <lilflygal21@aol.com>
bx, ny USA
Thursday, June 22, 2006 at 15:50:43 (EST)

Hi sorry just a correction to my e-mail address - hockly@gmail.com thanks Hazel
Hazel Hockly <hockly@gmail.com>
Boksburg, RSA
Thursday, June 22, 2006 at 08:55:01 (EST)

Hi my name is Hazel Hockly. In 1997 at the age of nine months my daughter Chelsey suffered a stroke. She was admitted to hospital where an MRI scan was done and it was discovered that she had two lesions on the brain. The doctors at that stage were unable to establish what the cause was. In 2000 Chelsey regressed in her speech and lost her balance which we later realised was as a result of a TIA. We were pertrified as we had no idea what we were dealing with and what was wrong with ourprecious daughter. After 3 years of not knowing what was wrong with our daughter we were referred to a professor in Pretoria, Johannesburg who ordered an Angiogram to be done. The results were extremely worrying as it showed an abnormal vascular structure in Chelsey's brain. No one in South Africa was familiar with was the condition was so through many a late night on the internet we managed to track down Dr Michael Scott at Boston's children's hospital who had a look at Chelsey's scans and confirmed that she had Moya Moya. We started organising for our trip to the states for Chelsey to undergo surgery, when we were blessed with the wonderful news that there was indeed a neurosurgeon in South Africa who was familiar with this condition. On consulting with Dr Menin it was decided to operate on Chelsey doing the Pial Syngiosis, which is where they take the arteries that supply the scalp and re-route them by suturing them onto the surface of the brain, which would increase the blood and oxygen supply to the brain. Chelsey's progress has been phenominal since, she is doing well at school and her right haemoplegia has improved tremendously. Although she does still suffer from headaches we know that we are truly blessed. However it has been an extremely difficult road to travel with no support and i was really happy to discover this web-site to keep up to date with this disease. Are there any families in South Africa who have this disease or whose children have, please be in contact with me.
Hazel Hockly <hockly@gmail.co.za>
Boksburg, South Africa
Saturday, June 17, 2006 at 15:43:24 (EST)

Hi, My ordeal all began in April of 2004 I was 33 at the time.. I had a minor stroke. I did not have any damage. I kept getting migraines and paralysis on the left side, my arms would get numb ,tingly and weak amd sometime it would affect my lag and the left side of my face as well. Basically the doctors told me that I suffered from comlicated migraines. I stopped going to that hospital because one of the Drs. thought I was a fruitcake anmd making it all up. They did notice that I had a narrowing on the right side of my brain. I then started going to Massachusetts General Hospital in Boston. Best decision I ever made. They treated me and the neurologist I was seeing referred me to a stroke specialist. I met with him and he saw that the narrowing was getting progressively worse. I was referred to a neurosurgeon. He is one of the best. He looked at my films and told me that it was Moyamoya, a few days later after a conference with other Drs. he told me that I did not have this disease. I had the surgery on May 15,2006 and I am 35 now.(EDAS) and at that point it was determined that I do have Moyamoya. My left sidce looks preety good he told me and that I will not need to have the left side done at this time.The surgeon also put 2 burr holes in my head as well. I would like to know if this can happen again, or after suegery it stabilizes for good.My headaches have cut down as well as the paralysis, I do not get them as frequent as I used to and the migraines are also less frequent and less severe. I am happy.
Lara Stoller <peanutponydude@yahoo.com>
Norwood, Ma USA
Wednesday, June 14, 2006 at 20:33:54 (EST)

I was diagnosed with moyamoya after suffering a series if 4 TIAs, Friday, May 26, 2006. I am in the process of determining the best course of treatment and so appreciate the information on this site.
Cathy Lunn <calunn@vassar.edu>
Kingston, NY USA
Tuesday, June 06, 2006 at 17:58:40 (EST)

My name is Amy Stewart and I live In Texas. I was diagnosed with mm in 2000. I went to my doctor for migraines and did an mri and found the moyamoya. I had my first surgery in 2001 and the second in 2002. I had a stroke after my first surgery and it affected my speech. I get tired very easily. Sometimes I go to bed when my kids do at 8:00. e-mail me anytime.
amy stewart <amygary@sbcglobal.net>
floydada, tx USA
Sunday, June 04, 2006 at 21:21:39 (EST)

My girlfriend was diagnosed with moyamoya about 4 years ago. She had surgery and things were fixed I guess, but she doesn't like to talk about it. Thanks for all the information.
Crissi <muffinsntea@yahoo.com>
USA
Saturday, June 03, 2006 at 13:19:16 (EST)

My 8 yr old son was diagnosed with moyamoya on April 25, 2006. We flew from Milwaukee, WI to San Jose, CA on May 10, 2006 and Dr. Gary Steinberg successfully completed direct bi-lateral by-passes on each side of his brain. We flew back home on May 25, 2006. Dr. Steinberg is amazing! Stanford's Children's Hospital and everyone involved in his care are the best in the world! I highly recommend that anyone with this disease please contact them. They will gladly take care of you!
Renee <rmbielawa@yahoo.com>
Hartland, WI USA
Thursday, June 01, 2006 at 11:42:41 (EST)

i was just diagnoised with moyamoya and would like someone to talk with ..im scared
angie fowler <angel03773@yahoo.com>
newport, nh USA
Tuesday, May 30, 2006 at 19:07:25 (EST)

I just found out I have this disease and am looking at where to go for my operation. I had a stroke on May 2nd and the testing that followed showed I have moya moya. Looking for imput on where to go for the best success story
Larry Berg
Glasgow, mt USA
Friday, May 26, 2006 at 21:06:26 (EST)

My son is is a 12 year cancer survivor of medulloblastoma. This is a brain tumor. He had radiation at the age of 3 to complete his treatment. He now is having problems with the blood vessels in the right side of the brain. We have scene Dr. Scott in Boston. Has any one had this problem where the moyamoya was radiation induced? His surgery will be in July. Any informtion will be appreciated.
Norma Zimmerman <enzimmerman@comcast.net>
Lambertville, nj USA
Friday, May 26, 2006 at 10:12:28 (EST)

My wifes 8 year old neices family was told today that she has Moyamoya. They are setting surgery up for next week. Why does this happen to children so young that have so much to live for. No I am not a spammer.
Robert Frank <hawk1_1@sbcglobal.net>
Oroville, Ca USA
Thursday, May 25, 2006 at 19:58:17 (EST)

Nice web site DJ. This is important work. My son, Nicholas, was diagnosed with Moya Moya in December of '96. We were given the 'there is no hope' speech by his neurologist, but she did send us to Stanford to meet with Dr. Steinberg and his team. Nick had the surgeries in January and March of '97. Nick will graduate High School in June as a healthy and active student. Nick's very good quality of life is a direct result of the surgeries he had at Stanford and we will always be grateful to everyone who was involved. Back in 96, his Neurologist, who we love, was giving us the best information she could at the time. There was very little information about this disease ten years ago and she was very concerned about doing any surgery when Nick s circulatory system was in such a compromised state. We were sent to Stanford because there was nothing else she could do. The only good thing about getting the no false hopes talk is that everything after that was good news for us. Dr Steinberg and his team were supremely confident that Nick would be fine. They were right. Nick s neurologist has since seen several Moya Moya cases and has packed them all up to Stanford. John Groen
John Groen <Silverseagod@comcast.net>
Castro Valley, CA USA
Saturday, May 20, 2006 at 00:23:12 (EST)

Hello, im Mr_Moyamoya germany. At 6.6.6 ill go to hospital to have a wrigt STA-MCA-Bypass. If there are christians, please pray for me to Jesus. Thanks a lot In Christ Arno Gabriel (Mr. Moyamoya)
Mr Moyamoya Germany (Arno Gabriel) <AGabriel@AOL.com>
Sinn (its really the Name of the Villlage), Hessen Germandy
Thursday, May 18, 2006 at 16:50:45 (EST)

I am currently working with a family whose teenage son was recently diagnosed with moyamoya. I am looking for any information to give to this family that will guide them through this and any links them will help them make informed decisions for their son. I thank any and all who have helped in advance. Thank you, Marcie
Marcie Price <mprice@ocgov.net>
Utica, NY USA
Thursday, May 18, 2006 at 09:45:20 (EST)

DJ, It is absolutely wonderful what you have done here. The information is greatly appretiated. My 30 year old brother has just been diagnosed with Moymoya this week. I will point him to your site. Thanks again, Jeff Longtin and Family
Jeff Longtin <Jeff.Longtin@hotmail.com>
USA
Thursday, May 11, 2006 at 11:32:16 (EST)

My son was DX with moyamoya in July of 2005. It has been a real struggle for him and us. Our story began on 7/21/2005 he had called me at work and said mom there is something wrong with my noodle its all messed up. I'm a nurse and I thought what could be wrong with his brain he is only 25 at that time. So I went home after work and talked with him he was very confused calling me my daughters name his dad his brother name. So I proceed to talk with his boss and he said tim was not able to express him self correctly. Then I called the dr. I worked with and he said tim has expressive asphsia and maybe a stroke and we needs to go to the hospital and get a ct scan done. So we went to tbird sam. They did a ct scan and notice something was wrong and they added dye and Tim had severe reaction to the contrast dye and they could see he had a stroke. They decided to keep him and more testing / a MRA/ and there they could see the moya moya disease. The nuero surgeon came in and gave us the news the nurse looked up moya moya on the computer and gave us some information which seem very bad. Neurosurgeon wanted us to see one of his partner Peter Nakaji who has seen patients with this problem. And also an neurologist. We meet with Dr. Nakaji in Aug. Was scheduled for and angiogram. In Sept. Tim went for surgery they were hopeful the could connect the temple artery to a vein in the brain but as luck turn out was unable to. Tim went to ICU for 24 hrs seem to be doing ok. Next day we transferred to a regular floor. Then the next day Tim had a 2nd stroke and was unable to speak except for mom. Was transfer back to ICU for 5 more days. Dr. Nakaji told he would do anything in his power to save our son. We were so worried we had everyone we knew start to pray for him. And with in 24 hrs Tim was starting to speak a little bit. He continue to improve and went home. Tim had his 2nd surgery on the other side in Nov was not able to connect temple artery on that side neither did great without any complication. He just had his 6 month check up with MRA perfusion was told maybe a little improvement on the right back side and also told us he probably has had some mini strokes. He is back to work for now his speech is improving he has a great speech therapist. We were told to keep him well hydrated {he works outside in sunny Ariz.} He does have a great Dr. Dr Peter Nakji at St. Joseph hospital barrows and a great neurologist Dr. Frey. Has any one out there had any improvement after the 6 months mark? Are most of you working? Any other problems to watch for? I love the moya moya site I'm always looking to see what is new. Thank you DJ for all you have done.
Karen Clark <SKCLARK1@MSN.COM>
Phoenix, AZ USA
Thursday, May 04, 2006 at 21:05:42 (EST)

My sister was diagnosed with MoyaMoya in September 2005, She is in a nursing home in Ohio now but we are trying to get her down here, Of course, there are multiple problems with disability, Social Security & her existing hospital bills. I'm trying desparately to find a grant that will assist in building onto my home as it is very small. Can anyone tell me what I need to do to get these things resolved & if anyone knows of any grant programs without having to buy a guide. I'm obviously not a wealthy person & a guide, no matter the cost is a cost my finances could do without. I really feel that having my sister here rather than in a home is so beneficial, she'll be with her family, the people that really care about her & want to help her overcome this disease or at least help her to become comfortable with the situation.
Pamela Dougherty <pasudo2@aol.com>
Fayetteville, NC USA
Thursday, May 04, 2006 at 19:20:09 (EST)

Thanks for making this website. It helped. I also thought the name of this disease is just so weird, sounds like an island,like bora-bora :) hehe... Anyways, my brother-in-law was just told that he had this disease, and right at this moment he is in Singapore (National Singapore University Hospital)for long check-ups. The symptoms just occured around 3 weeks ago. Well, I wish the best and i also give my prayers to others with this disease...
Eryka <Banyuwangi@hotmail.com>
Semarang, Indonesia
Wednesday, April 26, 2006 at 03:47:16 (EST)

I have been diagnosed with Moyamoya since 1998. My symptons worsed dramatically in 2005. On February 8, 2006 I had a Craniotomy and an "EDAS" procedure done on the left side of my brain being I was receiving less than 70% oxygen to the left hemisphere. I am doing better each day, thank God. I still have exacerbations on the right side of my body: predominately on the right side of my face since surgery. I had my surgery performed by Dr. Robert Rosenwasser from Thomas Jefferson Univerisity Hospital in Philadelphia, PA. Assisting was Dr. Chen who was trained by renowed Dr. Michael Scott from the Children's Hospital in Boston, MA. Dr. Scott referred me to Dr. Rosenwasser. Dr. Rosenwasser has performed between 50 to 100 procedures with Moyamoya patients and I am confident in his abilities and that of his fine staff. I hope this helps anyone who may need this. I am looking forward to celebrating my 43rd birthday on April 23rd.
Andrea P. Koutoudis <apkoutoudis@yahoo.com>
Ambler, PA USA
Monday, April 17, 2006 at 13:52:11 (EST)

i am 31 years old just had bypass surguery in new orleanes.
cheryl robb
saucier, msi USA
Sunday, April 16, 2006 at 14:27:36 (EST)

Hi, I'd like to know if there are web sites in Spanish with information about Moya-Moya. An Argentine friend of a relative was recently diagnosed and they want to learn of treatments and prognoses. Thanks! (I sent this before but the email address had a typo).
Graciela Spivak <gspivak@stanford.edu>
USA
Wednesday, April 12, 2006 at 15:07:01 (EST)

I like to say thank you for posting information about this disease. I just found out Sunday 9th that my very best friend was diagnoised with moyamoya. Everyone that has moyamoya are in my thoughts and prayers. Thank you, candace newkirk
candace newkirk
raleigh, nc USA
Monday, April 10, 2006 at 04:52:49 (EST)

In 1963 When I was 24 I suffered a stroke that left my left hand and face paralysed. I was hospitalized at Columbia Presbyterian in New York. The diagnosis was an occluded carotid artery. Physical Therapy restored mobility to the hand and the face improved with medication. After 3 weeks I returned to work. The hospital put me in a study group with a Dr Martin seeing me every few months. Except for reduced feeling in my left hand my recovery was good. I married the followimg year and got on with my carreer. Forty years later in 2003 I suffered a minor TIA when I lived in the Houston, TX area. I was referred to Dr David Chiu at Methodist Hospital for consultation. I was feeling ok until I suffered a brain hemmorage a few months later and was hospitalized at Methodist. Dr Rose at Methodist transplanted a scalp antry from my left temple into the left side of the brain. The surgery was succesful and after some physical therapy I was discharged. Some weeks later I suffered a seizure during the night and was taken back to Methodist Hospital in Houston. Scans showed water on the brain. A shunt was implanted. Heavy doses of antiseizure medicine meant a very slow recovery. Served long periods in skilled nursing homes. After 6 months in a wheelchair I was fortunate to see Dr. Baejer at Northwestern Medical Center in Chicago and he started a slow reduction of Kepra. Wihin 6 months I was out of the wheelchair and particapating in living again. It has been a slow but steady improvement over the last year. I was very fortunate to have seen such great neurosurgeons and therapists,
Tom Kilgallon <kilg@aol.com>
Naperville, IL USA
Saturday, April 08, 2006 at 00:30:40 (EST)

My co-worker, 27, just died of this disease tonight. She had all the headache type symptoms with visual hallucinations since she was 3. She was never diagnosed until it was too late. Thank you for all you are doing to bring awareness to this disease.
Ann Hauser <drofnatsa@yahoo.com>
Portland, OR USA
Friday, April 07, 2006 at 02:45:22 (EST)

I actually just found out today that a childhood friend of mine has been diagnosed with Moyamoya disease and is having surgery on May 4, 2006. I came on to your site to find out more about this disease since I've never heard of this. Thank you for posting this website. God Bless and you will certainly be in my prayers.
Belinda Borja <belidancer@hotmail.com>
Las Vegas, NV USA
Thursday, April 06, 2006 at 23:27:14 (EST)

i have moyamoya. just looking for supporters. i just want to know how the surgery goes. if you are really in there for just three days. thanks tara
tara herrington <turtletara23@yahoo.com>
cynthiana, ky USA
Thursday, April 06, 2006 at 23:02:59 (EST)

Hi ....my last posting was Feb 6/06. Ella is now 7 months old and is doing as well as can be expected. I try not to get my hopes up too high just in case there is a set back in her progress. I do have to share with you all that Ella has been spasm free since March 27 (keep fingers crossed) and that she is now rolling over!!! Yay! I am excited because we have been told that Ella is about 2 months "behind" in her development/motor skills. Every little milestone that others take for granted is one we are thankful for... We had our follow up visit with Dr. Cochrane and the neurosurgery team and they are satisfied with how the wounds on Ella's head have healed. We will not know what is going on "inside" until about July when she is scheduled for a CT scan. So....it's more like a waiting game. I hope she doesn't have another stroke, I hope she can catch up developmentally now that her spasms seem to be under control, I hope her vision also improves as her brain starts to process what she sees a bit better now . All in all, Ella is a happy and content baby. AND I feel better when I come to this site and share the trials and triumphs of people who have experienced moyamoya....thanks all!!
Carmelita Basa <ccruzbasa@yahoo.ca>
Port Moody, BC Canada
Thursday, April 06, 2006 at 22:06:40 (EST)

DJ, I visited your excellent Site, and have linked mine to yours. Hat's off to you for what you're doing for moyamoya patients worldwide. Best regards, Vini G. Khurana www.brain-aneurysm.com
Vini G. Khurana <vgk@brain-aneurysm.com>
Phoenix, AZ USA
Tuesday, April 04, 2006 at 23:53:23 (EST)

John Voorhis,My daughter was diagnosed at Albany Medical Center.Her suregery was at Boston Children's Hospital.Looks like we're neighbors,we live just outside of Albany.It's great to see that your wife is doing so well now.Albany Med. is a wonderful hospital we felt lucky to have them there to make the diagnosis. Mary Grace
Mary Grace <mgrace5@nycap.rr.com>
east greenbush , NY USA
Monday, April 03, 2006 at 21:12:17 (EST)

SORRY for all the mistakes. I was meaning to say I hadnn't had any more TIAs since and actually tomorrow is my six months checkup.
Gennie Scales <genvsc@hotmail.com>
NC USA
Sunday, April 02, 2006 at 23:30:01 (EST)

I wrote my story latter of last year needing to find a doctor. Well thanks to all my moya moya family responding so quickly, I had my brain bypass on Oct.21, 2005. I was quite challenging getting my insurance to pay for Dr. Steinberg, but I did get a second opinion from him. He is wonderful and seems to really know his stuff. His staff is really friendly and helpful. However, I find a local doctors in the North Carolina area who performed my surgery. There names are Dr.Margraff at WakeMed and Dr. Fukishima from Duke. They team up and did my surgery and it was based off of Dr. Steinberg's second opinion. So I had the whole world working together and I am doing fine. I had any more TIA's since.
Gennie Scales <genvsc@hotmail.com>
NC USA
Sunday, April 02, 2006 at 23:24:10 (EST)

hello! just learned of my beautiful daughter's diagnosis 3 weeks ago after her 3rd stroke. thank you for your website, and your help with answering some of our questions. talk about feeling blindsided by this disease, what an understatment!! thanks for your message of hope.
dale b. <dspeedo@sbcglobal.net>
villa ridge, mo USA
Sunday, April 02, 2006 at 13:09:50 (EST)

Hello, Thought I would leave a little bit about my daughter. First thank you for the site it both scares and cheers me at the same time but Im glad its there, Amber is three and happens to have Down syndrome. She is a lovely bright and bubble little girl. In December 2005 when she was two she had a massive stroke out of the blue(healthy till then) that left her paralyzed down her left side. Her diagnosis was MM. Like you as soon as I could I tried to find out as much as I could. I had just lost her dad very suddenly and to be honest was ecstatic because at least she was alive. Since then she has stared to walk with help. Her left shoulder is starting to move and I still have hope she will get most of the movement in her left arm. She has lost all speech so it s back to square one. Most of all the lovely personality that make her is back. PS Note for a month or more she would laugh and cry way too much-I have been told this is common following strokes and usually resolves itself. The doctors have been lovely. Mr. Teagi at Leeds General (Neuron surgeon) thought a right side revascularization only but had no experience so went for a second opinion a Great Ormond Street Hospital, London. She has her first op there on 10th April the following on her left side three to four weeks later. Dr Ganansen (Consultant) and Mr Thompson (Neuro Surgeon). Both seem very nice and reading about them on this site has reassure me Hope to get in touch with Jane, Chloe s Mum , She live near Amber and I. Warmest wishes to all of you
Avril (Ambers Mum)
North Yorkshire, UK
Friday, March 31, 2006 at 17:43:01 (EST)

Janet of Lake Villa, Il. again. Sorry about my Guest Book entry posted on March 29th. Some of my words are missing. This does not get blamed on Moyamoya, but I do blame in on my computer. I just want to post my e-mail address janetjbishop@prodigy.net. Thank-you Lisa. After I talked to you I went over to my best bus driving girlfriend and told her it just wasn't about a broken leg. You were right brain surgery haha moyamoya tell me another one. Sat her down on her computer took her to the site and told her Good Luck telling everyone Janet needs brain surgery. I really feel bad for her having to tell my bus friends, their going to think we are both out of our minds. Her for believing me and me for coming up with such a story. Poor Carol.....Thank-you again Lisa for making me laugh. Love Janet ps don't worry DJ I also showed my friend Carol your pics. She believes....
Janet Bishop <janetjbishop@prodigy.net>
Lake Villa, Il USA
Thursday, March 30, 2006 at 18:22:09 (EST)

Dear DJ Hello Well you did it. Because of you I'm going to California. MAY 10TH is my first surgery and May 16th is my second one. My story is unlike everyone elses on y Had a very good timeour site. I'm a special ed us driver 27 yrs. I love my job. One bonus is having two weeks off for Christmas break SOOOOOO Christmas break we spent in our camper in the beautiful Tenn. Smokey Mts. Went to Dollywood hopefully my husband and I will retire there. Okay big deal you say what the heck does this have to do with MM. On the way home we stopped in the Cumberland Frozen Park State Park, long story short I broke my leg in three places, yeh you dsay so people break their legs big deal. Yes it was I couldn't remember anything about how I broke it. My husband says I was taking my dog outside in the dark. Enter MM because of a broken leg I have a Hawaiian drink desease. Had all the wonder tests do at the University of Chicago. Had an appointment with Dr McDonald sent all my kids info on Dr. Mc. They liked him, but they allwent on the net found your site, then I went on your site. The r5adiologist that radioactivated me twice told my husband to get a second opinion. Thats where you come in. We mailed my brains info to Stanford. To our surprise the next day a beautiful wonderful lady named Theresa called and asked how we knew to mail my results to Dr. Steinberg. My husbands response was DJ MM.com. Theresa told my husband why don"t you have Dr. Steinberg do the surgery. Blew our minds.......Theresa said that you are getting married. I've been reading your website for a long time and have followed your orders not to go on line because I'm new. Anyway, back to Theresa,she really impressed me. You getting married, I told her I was impressed with your girlfriend. She went on line with me on the phone and I took her through the guest bood so she coulod read the email your better half wrote to everyone saying is will embarras you. Theresa read it. You have a very caring loving wife to be. I hope I have the right wmen that your marrying. DJ please call me 1-847-356-6798. Im old enough to be your mom.......so this is not a dating e mail.....Remember I've driving school bus for 27 years. I went thru sorry we went throught I Bone Marrow Transplant with my son, so I know what my fmm.comamily is going thru. Call me Thank you for
Janet J. Bishop
Lake Villa, Il USA
Wednesday, March 29, 2006 at 18:40:10 (EST)

I'am 22 and there are 2 people in my family my aunt40 and cousin 11 I am 18 week pregent i am really scard I hope i don't and my kids i wont to check if i have it will they do it pregenat please write back iam scard Michelle
Michelle Rotella <michellerotella@yahoo.com>
potsdam, ny USA
Sunday, March 26, 2006 at 17:05:37 (EST)

Hi DJ -- I started experiencing what I found to be moyamoya disease when I was 12 years old. I was very fortunate to find Dr. Steinberg within a year of the initial onset of the disease since it was right before the advent of the Internet (1993)...I had the bypass surgery you described on both sides of my brain (Jan. 7, 1994 and Jan. 13, 1994) and have been VERY fortunate with the success of the surgery. I am now almost 27 and doing very well, as a result of Dr. Steinberg's miraculous surgeries. My mom did some research on moyamoya disease recently because my father has been experiencing similar symptoms to mine (he's 60). Though my understanding is that moyamoya is not genetic, it does seem to be more prevalent in Japanese people. My father if full Japanese, I am half. One thing I found interesting with my experiences at Stanford was that there does not seem to be a pattern to who the disease affects or when or why. I've tried to encourage my dad to seek Dr. Steinberg's help in identifying if his symtoms might be indicative of moyamoya, but he's seeking other doctor's assistance at the moment. I think his concern is that he would be wasting Dr. Steinberg's time? I'm not sure, but I do know that he has the utmost respect for Dr. Steinberg and his work. The bottom line is that Dr. Steinberg saved my life. I met so many people at Stanford who had even worse experiences than I. We also went through our share of doctors who didn't know what was wrong with me, didn't prioritize my condition and didn't know what moyamoya disease was. There was a darling little Korean boy who had just turned a year old who didn't fare as well as I. I have a terrible suspicion that he might not have lived. His condition pre-surgery was much worse than mine - he had suffered multiple strokes and was permanently paralyzed on his left side. Another girl who was a little older than I had been diagnosed as mentally retarded for most of her life, then someone finally realized that it was not mental retardation, but moyamoya. Once they realized their error, they were fortunate to find Dr. Steinberg. I don't know how she fared. It has recently hit me how much my parents went through to find help for me and how much they must have suffered having their only child degenerate at such a pace. The progression of the disease was extremely fast, though I was so fortunate as to have no long-term side effects form the minor stroke that I had. Dr. Steinberg has told me that the stroke occurred in a region of my brain that doesn't control anything, but I find this hard to believe. Please do respond to me. I have never talked to anyone who is post-op with moyamoya disease, much less a patience of Dr. Steinberg's. I would love to compare notes with you and share my experiences with others. With my father's illness, I have been reliving the whole trauma and it's been very difficult. Thank you posting your experiences and pictures. I appreciate it more than you can know. Aimee
Aimee Riley <aimeekriley2004@yahoo.com>
Las Vegas, NV USA
Saturday, March 25, 2006 at 23:36:37 (EST)

I was diagnosed with moyamoya in April 2003. Since then I have had 3 TIA's. The most recent one was early March 2006. If not for the love and support of my husband I don't know what I would do. He has constantly been searching for information on the internet and so far has been really sucessful in helping me. I wish you all good luck and may God Bless you! Just wondering if any one else in Tennessee goes to Dr. Robert Singer here in Nashville, he's a great neurosurgeon?
Tresa Overstreet
Nashville, Tn USA
Saturday, March 25, 2006 at 13:22:54 (EST)

On Aug.20,2006,while on vaction in Buffalo, NY.My wife, Michelle(36 yrs.old) suffered a stroke and was braught to Millard Fillmore Gates Hospital. The doctors were puzzled and (3)days later, Dr. Levy spoke to us in depth about the diagnosis. "MOYAMOYA!", What the ?@#*&! is that.He calmed me down and explained the disease and said it can be corrected with bypass surgery. We were 8 hours from home and were referred to Albany Medical Centers Neuro Unit. We eventually met with Dr. Alan Boulos and staff, after re-evaluation, bypass surgery was the only option. Being a Registered Nurse and the strongest willed person I know. The first bypass was done November 16th 2005,home by Nov. 20th. BEST Thanksgiving EVER, especially for our 5 year old son.The second surgery was done Feb.16th,2006. On March 8th she got a clean bill of health and is now back doing her job as a Nurse at Saratoga Hospital. KUDOS to the Saratoga Hospital Staff for helping out a fellow Employee. We love you all and will never forget all you've done. P.S.: Thank everyone in this group for your eye opening and heart warming stories.
John Voorhis
gansevoort, ny USA
Friday, March 24, 2006 at 16:47:20 (EST)

My husbands brother had a stroke and hung on for awhile but died of what the doctors said was moyamoya. Roger had never heard of such a thing. My husband has always had "migraine type pain in his head but just reacently it has gotten so much more worse and so very very often. The pain literally knocks him to his knees. Today is the first day that I have searched the internet on this subject(3-16-06).
Debbie Stauffer <actongoatshaven@aol.com>
Acton, Ca. USA
Thursday, March 16, 2006 at 17:57:04 (EST)

dj im traci , dallens daughter-in-law. she had her first surgery on 1-20-2006!! shes done really well. we have been on youre site many times but didnt realize we didnt set up her e-mail back!!! we appreciate the info u &everyone; has shared on this subject!!!! thanks again
dallen <rockytraci@sbcglobal.net>
indpls, in USA
Tuesday, March 14, 2006 at 22:53:55 (EST)

Thank you for your helpful information on moya moya my 9 year old son best friend Hope has been diagnosed with it in the past week we are currently trying to find a cure or treatment for her. Our childrens hospital in Melbourne Australia have yet to work out what way to go any suggests for the famliy on what way to go
carol <samijae@dodo.com.au>
victoria, vic Australia
Sunday, March 12, 2006 at 22:12:00 (EST)

This Message Is For Everyone With Moyamoya Please Check Out The Message Board For the 2006 Reunion in Orlando,,The Disney Compasion Dept is giving all of us (including Adults w/MM) and there imediate Families free hopper passes for all the Disney Parks for 3 days !!!!!!!!!!! So this could be a Dream Vacation for Everyone..........Check the Message Board for More Information,,,,,,,,,,,,,,,,,,,
Elaine Calvert
Sanford, Florida USA
Tuesday, March 07, 2006 at 11:43:13 (EST)

I just wanted to thank DJ for this website , in a sense i don't feel alone in this matter anymore. Thank you so very much .
Andrea <ang6006@yahoo.com>
USA
Wednesday, February 22, 2006 at 22:54:15 (EST)

Hi Jamie Venning, Sorry to hear about your diagnosis but welcome to the MoyaMoya family. I also live in Michigan and was diagnosed in Oct. 2002. I was raised in Lansing but now live an hour south of the Mackinac Bridge. I was also referred to Dr. Fessler. Originally he wanted to perform Angioplasty on the left side of my brain but decided it was too dangerous in my situation--on the operating table that is. I did have the STA-MCA Bypass and EMS on my left side with Dr. Diaz, out of the same office, at Harper Hospital in Detroit in Dec. 2002. Anyhow if you want to chat please feel free to start a thread in the message board or you can email me. We can even chat by phone if you'd like. You will also find lots of helpful information and answers to many questions in the message board as well as meet the MM family, which is a great support system. I just had my second surgery on my right side on 1/9/06 with Dr. B. Gregory Thompson at U of M hospital. Again I had the STA-MCA Bypass and EDAS this time. I will say it was a much more pleasant experience with Dr. Thompson at U of M. I'm glad I switched. Email me and we can discuss why further. He would be another option for a second opinion. Good luck and hang in!!!
Lorie Fortune <fortunegirls@core.com>
Boyne City, MI USA
Monday, February 20, 2006 at 15:12:02 (EST)

I am recently diagnosed with Moyamoya disease. i have an appointment with a Dr Fessler in March. Is their anyone in the Detroit area who has been diagnosed with this and what was your course of treatment?
Jamie Venning
Canton , MI USA
Sunday, February 19, 2006 at 14:03:10 (EST)

hi i am so glad i found this side. i am a 45 year old female and been told to have moya noya,here in germany not much is known about it.no one can tell me what syntoms go with it or anything,maybe one of you can help me...may god bless you all..bea
Bea Madaj <Fam_m@t-online.de>
Alsdorf, Germany
Sunday, February 19, 2006 at 10:55:58 (EST)

Hello Everyone - I just came back from my second yearly check-up in Seattle with Dr.Newell and all is well. I was wondering if anyone knew of a doctor here in Georgia that specializes in Moyamoya. We recently moved from Alaska and our insurance is giving us a hard time about traveling all the way to Seattle for a follow-up appointment. Any help would be greatly appreciated. God Bless You All! Diana
Diana Vincent <kissingmyboys@Yahoo.com>
Valdosta, GA USA
Thursday, February 16, 2006 at 14:09:21 (EST)

I am Onyeoru, my daughter of five has been diagnosed with moya-moya. Honestly I do not know what to make of it till a friend directed me to this site. Any helpful info will be appreciated.
Onyeoru Owerri Demian <demianuwazuruike@yahoo.com>
Houston, TX USA
Thursday, February 16, 2006 at 07:49:59 (EST)

HI im Angela, i have Moya-Moya since May 2001i had s By pass surgery's i feel better now, but im suffered from Depressions I have 3 Childrn in the Age of boy21, 2 girls 12,6 i fee l beter now, but got proplems with my left Foot, im going to savannah GA in May, is tere somebody in Ga, who got they same like me? would like to hear from u , Angela
Angela <relyoa@aolcom>
Hanau, D Germany
Thursday, February 09, 2006 at 23:28:48 (EST)

hello to everyone.i'm Caroline,i'm 15 years old.i just wanted you to know that a very close friend of mine has been diagnosed with moyamoya.it was very difficult for her to find informations about her illness here in Greece, she might be the only one here who has this.i don't really know what to write,i just want to say to all of you that there are people suffering from moyamoya even in Greece!this site is just wonderful.i just hope everyone who suffers from moyamoya gets better.size the day! :) Coincoin
Caroline
Athens, Greece
Thursday, February 09, 2006 at 14:09:39 (EST)

hello ,my name is andrea and i was dianosed when i was 7 years old, i am currently 22. For several months i was having severe strokes , a miracle happened and i had the bypass procedure done is ganisvell florida. Atthe time before they knew what was wrong , the doctors told my family to enjoy my life with me as long as i have left . Now at 22 i am a normal functioning,looking, talking miracle with everyday problems that most people my age have. It's hrd everytime i visit a doctor they read my file and can't believe it , i've never really shared my story with many people until now. I am very extremely blessed and all he other survivors should be as well, please feel free to email with your story , maybe we could have something in common?
Andrea <ang6006@yaho.com>
cs, fl USA
Wednesday, February 08, 2006 at 19:55:52 (EST)

Several years ago, my little sister, Wendi, was diagnosed with Moya Moya disease, when there was very little known about it. We were told, at that time, that it was not familial. Many years later, three more of our sisters were diagnosed with this disease. Thanks to our youngest sister's experience, the other three were diagnosed much sooner, and were able to undergo surgery before irreversible damage occurred. We'll be forever grateful for Howard R. Reichman, M.D. and the work he's done in this field.
Susan <swnsn6@swbell.net>
Allen, TX USA
Wednesday, February 08, 2006 at 16:31:21 (EST)

Carmelita, Tricia has a daughter (they live in Ontario, Canada) Amanda had her first stroke at 9 months old and another one at 10 months old her email # is poopsie36@hotmail.com
Elaine Calvert <elainecalvert@aol.com>
Sanford, Florida USA
Tuesday, February 07, 2006 at 19:09:17 (EST)

I am so glad my husband found this site....our youngest daughter (we have 3) was discharged from British Columbia Children's Hospital(BCCH)yesterday. She had that EC-IC thing done - I say "thing" because it wasn't really a bypass. Ella is only 5 months old and her vessels are not big enough to do a proper bypass. The neurosurgeon, Dr. David Cochrane, lay the vessel "on top" of her brain. The vessel wasn't cut,but notches were cut into the piece of skull that was removed (then placed back)so that the vessel can "enter in and out" of the brain. At first, we noticed a left eye twitch at about 1 month of age. This progressed to (what looked like the startle relex in newborns) seizures with one lasting up to 15 minutes. We were scared silly!! Took her to a pediatric walk in clinic (u need a referral here to see specialist but not at walk in clinics) and the pediatrician immediately called his colleague in Neurology at Children's and sent us straight to emerg. Ella was diagnosed with Infantile Spasms. EEG done right away in emerg and was told it was abnormal. Put on Vigabatrim and Pyridoxine that night to control seizures. Was admitted and also told she may have Neurofibromatosis (NF1). What?!?! Great....can't really say if she has NF1 coz she has only 1 - u need at least 2 - out of 7 markers needed to confirm disease. She has the cafe-au-lait spot which look like sm birthmark all over body. Genetics are in on this and the rest of the family was checked = no one has genetic marker for NF1. ANYWAY, while looking to see what was causing Ella's seizures- 3 MRI's, Lumbar Puncture, 2 cerebral angiograms, and one Xenon CT scan doctors found MoyaMoya disease. We see Dr. Cochrane and the NeuroSurgery team again in March and (maybe another angiogram) to see if surgery was a success. Meanwhile, Ella continues to have her seizures, thought not as severe, and has been put on another drug= TOPAMAX. We see NeuroLOGY Feb 21 and also scheduled for another EEG. DOES ANYONE KNOW OF ANOTHER BEING DIAGNOSED THIS YOUNG?? We hope and pray Ella does not have another "stroke", tests confirm there's evidence of an old one, and that there will be new "roots" growing and collateral blood flow reaching the left front side of her brain. One last note, Dr. Cochrane is great. So approachable and kind, he even consulted with doctors in Boston before going ahead with the surgery. We've had the best care from all the departments- Neurology, Neurosurgery, Ophthalmology, Genetics, and the Nurses are awesome!
carmelita <ccruzbasa@yahoo.ca>
Port Moody, BC Canada
Monday, February 06, 2006 at 19:41:30 (EST)

Hi...my son who is 21, is undergoing the testing today to see if he has moya-moya. I came online to check out what the drs were talking about. His celebrial angiogram (sp?) is at noon today... We are currently in Houston after him having 2 strokes (both minor), TIAs, and a small heart attack. They found with his ultrasound on his neck that he has some weird thing with his caroid artery... sorry on the spelling.. I am quite overwhelmed that is for sure.. and so glad to find this site!!! Would love to hear from anyone! Sara
Sara Bryant <ilovemybulldog@aol.com>
Fort Polk, LA USA
Monday, February 06, 2006 at 10:56:39 (EST)

I made it through surgery ok,,but now i have the speech problems that i never had before the 7 strokes. They did the EDAS procedure because of my arteries not being there and some were tiny and didn't grow as I did.and that was the only choices they had in procedure's I'm hoping it works. But i won't have it done again when being Half Past Dead. My skull Looks like "Train Tracks" I just want so much too get back too normal. My mom has got mine a chad's 8.5 month old taking him until I'm on the mend.A person doesn't even realize just how precious life is until they almost called you on the OR table. But since the surgery on Jan 18th (6am) my headaches have died down but still big crowds makes me nervous. But I don't reget having the surgery just I won't have it done again, that was too close for comfort being able too see the doctors as they were working on me . And come too find out Dr. Ogilvy knows Gary Steinberg...Chad took pics of my head before and after surgery
Laura Stevens <hell_bytch_1@yahoo.com>
Waterville, ME USA
Saturday, February 04, 2006 at 23:48:48 (EST)

I am home from Boston... Surgery went okay....After the phiasco during this last surgery i am not having the other side done...Now how many people can say they were "Half past dead"?...Skull looks train tracks...half of my head is shaven..Think I'll start a new fashion trend They had me in self induced coma for about 10 days, DBL Penomia in both lungs and i thought it was a kick ass time NOT....and I flatlined almost 22 min....so all the BS u here about a white light and everything...most peeps expience that but i didn't..i hovered over myself and saw as they were working on me and almost called me after 22 min...but then it was like i was slammed back into my body and there was a "BLIP" on the screen and a toe moved and i took a deep breathe...I can't talk which was a delayed reaction from the last 7 strokes so i am gonna have too have speech theapy, OT and PT..at least there is one good thing that came out of it all..no more headaches..
Laura-Lee Stevens <hell_bytch_1@yahoo.com>
Waterville, ME USA
Friday, February 03, 2006 at 13:53:16 (EST)

Hello everyone. I was just wondering if there is any information available regarding personality changes for those affected by moya moya. I know of someone who had a mini stroke due to this terrible disease a few months ago and since then, this person's whole attitude has changed and it has affected my own life drastically. This person has broken the law several times since this incident and has gotten me involved by their dishonesty. This person also began to hang around with a new crowd and nothing I could say would get them to come back or to change. If you could offer any advice for me, I would greatly appreciate it. I understand that this disase has played a major role in their destruction, but now that I'm personally involved, I'm really angry at them and I just don't know where else to turn. Thank you for your time.
Benni
USA
Wednesday, February 01, 2006 at 20:27:06 (EST)

Hi everyone, DJ....Wow - what a site! My 5 year old daughter Libby has recently been diagnosed with Moya Moya. She has it associated with Neurofibromatosis. She has had 6 or so very mild TIA's over a 3 year period. We have recently met with a UK Moya Moya specialist in London and are going back at the end of February to meet with the surgical team to see what Libby's options are. It seems odd to consider what is happening inside her head when she is so well on the outside - I guess that's part of the disease. I wish everyone who reads this message well and look forward to learning more from this great website. Karen xx
Karen <karen@ashby352.plus.com>
High Wycombe, UK
Wednesday, February 01, 2006 at 16:19:57 (EST)

Hi Janelle, I saw your message and that you are from OK. I am from Tulsa and also have MoyaMoya. Please email me!
Melissa <lionqueen9032@aol.com>
Tulsa, OK USA
Tuesday, January 24, 2006 at 22:33:43 (EST)

Hello everyone. My mother Carol Santellana visits this site offten. Moya Moya is a part of my every day life; I have a loving husband, two beatiful girls, and a demanding job. My lack of proper energy for a 24 yr old is frustrating; even after surgery. It's hard for most people to grasp what moya moya does to ones body. It's even hard for my husband to understand why I am tired often. I keep fighting to let moya moya know I will not give in easily. Hope everyone who reads this will find/keep on fighting.
Jennifer Lara <jennifer.santellana@sci-us.com>
Houston, TX USA
Tuesday, January 24, 2006 at 16:47:41 (EST)

hello! i am a new patient to moyamoya. on november 7 2005 i was starting to have episode where my right arm was reaching out in air. i also couldnt move to the right. i would only walk to the left. i couldnt remember how to put an infant back in the car seat. my episodes was happening more and more each day. they would happen several times a day as the week went on. on the 9th of november i was at work on my lunch break with a co worker when i started to have an episode. my co worker knew what was going on. she immediately told my manager, she called my husband and my doctor. my husband took me the doctor and i had two more episodes there. after my doctor took x-rays of my brain he told me there was a lesion and that i needed to go to the hospital to get a mri done. as i was being admitted i had another episode. but this one was worse than the rest. i had no idea what was happening to me. later in the day i found out i was having seizures. i had never had this before. the doctors told me i had suffered a mini stroke. they also said that an artery on the left side of my brain was blocked and i had moyamoya. after being on maui for two days. they flew me to oahu kaiser for more test and for another week. they decided to treat me with seizure medication and keep an eye on me. while i was on oahu my family decided to look up moyamoya on the internet. my sister has been in contact with dr. steinberg and several survivors of moyamoya. i am in the process of gathering all my films and sending them to dr. steinberg. i do not want to have any more strokes. i have a great husband who is afraid of losing me and two wonderful kids. my children are 11 and 4. i need to be with them and see them go. please keep me and my family in your thoughts and prayers. please contact me on my e-mail address with any comments. i want to be alright but i am very afraid.
ray
kahului, hi USA
Monday, January 23, 2006 at 21:14:28 (EST)

hello everyone it tammie i have a 5yr old with moyamouya she has it since she was 14months i want to know if any one can answer my question because i see people in the web that just found out that they had moyamoya i never ask her dr and i know its a gentic disorder but i want to know why some people get it while there babys and others find out about it when they are adults i thought you was born with it so would it not make since why you didnt have strokes are tias when you were smaller are is it because of dj just getting the word out i didnt know any other person that had this but him when they found my baby and thank him and god for the web site are still alot of us would be lost for words. i know when i tell people about savannah i just say go to the web and read it you will see what alot of has to go thru every day for are family but this is the way i look at it god give this awful diease to very special people and there family cause some could not handle what we have all been thru amen. and i also want to say it takes special people to have this too god bless each and every one of you just keep your heads held high.you all are in my prayers thanks again dj.the abbruzzos
TAMMIE
SPRINGVILLE, AL ALABAMA
Monday, January 23, 2006 at 15:22:26 (EST)

DJ,Myname is Janelle Whipple. I posted my story in your guestbook about a monyh or so ago.I live in OKC,OK. as I was reading some of the other entries I learned that there is a fellow Oklahoman from Edmond OK. whose name is Chad Langager. I would very much like to communicate with him on the internet. My question to you is: can you or will you help me get that acomplished? My E-mail address has been given.
Janelle Whipple
Okc, ok USA
Wednesday, January 18, 2006 at 00:38:51 (EST)

Hello everyone. My 26 year old son Brantley was diagnosed with Moya Moya 23 years ago. The neurologist had to look it up. I have never heard of or talked to anyone else who has been afficted with this disease. How wonderful it feels to know that I am not alone,although I am sorry that anyone has ever had to suffer through this. Moya Moya was a monster that attacked my little boy and tore my life wide open... He was an extremely fussy, irritable baby from the beginning, who used to throw his arms out and scream. I was told it was just "collic". Right before his 3rd birthday, he just lost the use of his left arm one day. I had it x-rayed, and finally was referred to a neurologist, who said he had had a stroke. After a week in the hospital, he was diagnosed with m.m. At the time we were told that there was nothing that they could do. A year later we were told of a doctor in Boston who had successfully performed an "experimental" surgery, so we took him there, and he had both sides of his brain done. The surgery worked; however he had had 2 strokes before he could get it, and numerous TIA's. He went on to have one more stroke when he was 6, which affected his right leg. At 26, he is the joy of our lives, and not a day goes by that I don't thank God for him. Cognitively, he functions like a 5 year old, and his speech is excellent for that mental age. He has very limited use of his left arm, and walks with a limp. The biggest residual problem we have had is seizures, which we have never been able to get control of. He lives at home with us, and goes to adult day care during the day. He has 2 younger, beautifully normal siblings, a sister and a brother. I would love to hear from some of you. God bless you DJ,you are the best!
Karen Mottinger <karen7493@comcast.net>
Glen Allen , Va USA
Sunday, January 15, 2006 at 20:43:07 (EST)

I am so sorry too hear that ur bypass 2 yrs ago didn't work..so what are their plans now? what other options do you have? I'm leaving for Boston tomorrow for the 1st of 2 surgeries...one now and another 3 months later. Hopefully within 6 mo too a 1 year they would've worked and are growing new blood vessels. the procedure that I am Having done is the EDAS...My thoughts and prayers are with you Sharon..and again I am truly sorry that it didn't work
Laura Stevens <hell_bytch_1@yahoo.com>
Waterville , ME USA
Sunday, January 15, 2006 at 16:37:57 (EST)

My daughter Stephanie was diagnosed with moya moya in June 2004. She has had two surgeries (one in December 2004 and one in July 2005). The surgeries were performed by Miss J Grieve and Mr Dominic Thompson at the National Hospital for Neurology and Neurosurgery in London. Stephanie is now 18 years old and is making a slow but good recovery. This site has been invaluable to our family as we could not obtain such information anywhere else. We are in contact with Joe Bustard and family as they live quite close to us. Thank you for this wonderful site.
GAIL BROWN <tony@cystichygroma.co.uk>
Belfast, UK, N Ireland
Sunday, January 15, 2006 at 14:50:44 (EST)

hello my name is tammie and i have writtrn before my baby is 5 and she has had 10 tias i have seen were some people has had more than 1 surgery my baby has had only one she went almost 2yrs without having any then when she started k4 she had one the 2 day of school but when she was little are had her surgery she kept having these strokes and it really got to me now we just make sure she drinks atleast 2liters of liquid a day i dont give her motrin are advil are anything with antihistamines cause the advil and motrin can make her bleed more and the antihistamines can make her dry up so you dont want that so whenshe gets a cold we have to pretty much let her wear it out cause of the stuff she cant take but you know even thought she has been threw all of this i would trade for nothing in the world she is just an angel i cant wait for some of you to meet her in august for our get together if any one want to e mail me feel free to do so bruzzermtjs2aol.com........ the abbruzzos
TAMMIE ABBRUZZO <BRUZZERMTJS@AOL.COM>
SPRINGVILLE, AL USA
Saturday, January 14, 2006 at 18:25:50 (EST)

I was told that I had moyamoya three years ago. I had by-pass surgery two years ago but did not help.I am a 53 year woman.
Sharon Garthoff <SKAY2449@AOL.com>
Evansdale, Iowa USA
Saturday, January 14, 2006 at 00:40:46 (EST)

I forgot to say they are Hopper Passes where you can ride the Disney Bus from one park to another in the same day. And for those that don't know yet this years MM Reunion is in Orlando
Elaine Calvert <elainecalvert@aol.com>
Sanford, Florida USA
Thursday, January 12, 2006 at 18:17:55 (EST)

I Wanted to make an annoucement in here for EVERYONE with MM. For those coming to Orlando August 11th thru the 13th I have been in touch with the people at Disney and of course the COMPASION DEPARTMENT always give (sick-kids) Free passes but she said they also had a program for (sick-adults)so US Adults can get 3 days of one day pass toMagic Kingdom, Epcot, Disney-MGM Studios, and Disney's Animal Kingdom........If anyone wants to email me (and have a Fax Machine--or access to one) I will Fax a copy of the letter so they can see what you need to do. Also we are working on A Group Rate at the Disney Hotel So as soon as anyone knows they need a room THEY will need to know how many rooms are needed and they have several different rates......
Elaine Calvert <elainecalvert@aol.com>
Sanford, Fl. USA
Thursday, January 12, 2006 at 18:14:06 (EST)

This is in reply too April on her question as too why she should have surgery ASAP. The reason she should consider surgery ASAP is too prevent more mini strokes which leads too the BIG ONE eventually. I personally have had 2 more TIA's since November of 2005. My first surgery is on Jan 18th and the 2nd is scheduled for 3 months later.
Laura Stevens
Waterville, ME USA
Thursday, January 12, 2006 at 11:20:19 (EST)

I am a 29 yr. old woman from Lexington, Ky. I have two children ages 8 and 5. I was diagnosed with MoyaMoya about a year ago after having a cople TIA's. It took over a year before my doctor told me what caused the TIA's. My doctor has put off surgery but I'm not sure why? From what I've read you should have surgery as soon as possible. Can anybody give me any advice ?
April <aprilcarson1@hotmail.com>
Nicholasville, Ky USA
Tuesday, January 10, 2006 at 10:44:46 (EST)

I'm a 35 yr old female and a mother of 2 boys. The 18th of January I have the first of 2 EDAS surgeries done at Massachusettes General Hospital by Dr. Christopher Ogilvy. I was told that the EDAS procedure is my only option. Other than that I would die alot sooner. I've been out of the hospital since July and since then I have had 2 mini strokes, one on Dec. 30th that lasted 15 min and it affecteted my left side instead of the right. Another stroke the first part of November or second part(forgive me my memory is shot)that affected my right side. Never lost mobility just went numb and tingly..my whole body even my tongue was split in half. Come too find out the neurosurgeon knows Gary Steinberg quite well. That makes me feel better knowing that. Dr. Ogilvy is a straight shooter,never kept anything from me. Told me that this is the worst case of Moyamoya that he has ever seen,due too the fact that some of the vessels in my brain are not there(wasn't born with them)and some are tiny-didn't grow as I did and some are closing in on themselves. I applied for SSI cause I can't work and the Moyamoya has given me an extremely short temper(Loose cannon) cause it has affected both sides of my brain and the frontal lobe. About 90 days later the 2nd surgery will take place. So now on the 13th of this month I go for a psych evaluation for social security. The headaches are getting worse by the day and I know that after the 3 hour eval I will have an extremely bad headache..any suggestions on how too ease the pain?
Laura Stevens <hell_bytch_1@yahoo.com>
Waterville, ME USA
Monday, January 09, 2006 at 06:37:58 (EST)

Hello Everyone! My name is Stephanie. I am a close friend...okay, we're together, of DJ's. I have known DJ for over a year now, as we used to be next door neighbors. I moved out in June of 2005, and kinda lost touched, but never lost thoughts of him. Back in November I decided after 3 weeks of thinking of him to pick up the phone and call. We went to dinner and caught up on our 5 months of absence. Can I tell you how nervous I was at dinner!! LOL We decided that we had to see each other again soon, and I think it was about 3 days later that I felt like I was falling in love. I know that I don't have to say it, because you all already know, but DJ has one of the biggest hearts in this world. The love and compassion that he has for this site and purpose is astounding. Why can't there be more people out there like him. What a wonderful world it would be. We talk alot about moyamoya.com and all the wonderful people that this horrible thing has inflicted. I have learned so much, not only from him, but months ago from the website. It's funny, I ask DJ all the time if he has taken his aspirin for the day...nagging girlfriend stuff, I guess!! Before meeting DJ I had never heard of this thing and when he told me about it one night I immediately went to the site to learn and understand more, once I got there all I could do was sob reading all the stories, knowing that DJ had done this thing without a wife/girlfriend at the time. BUT, now that I DO understand that there IS life after moya moya I feel alittle better. I am affected by this stuff everyday, not physically, but emotionally. Being with someone that has moya moya has made me second guess a cough, sneeze, headache, or tummy ache. I cherish every moment of my life with DJ and my son, Conner. DJ is so humble that he doesn't take credit for half of what he has done. I AM the luckiest women in this world. I wanted to just say hello to everyone and introduce the other half of DJ! (I'm sure that I have completely embarrassed him :) ) I look forward to learning more about you and your families, and hope that I can become a part of your moya moya family. God Bless...
Stephanie Vermillion <super_nova01@yahoo.com>
Wichita, KS USA
Tuesday, January 03, 2006 at 23:46:09 (EST)

I HAD A STROKE AT 16 YEARS OLD.WHERE I WAS TOLD AT A CHILDRENS HOSPITAL IN ATLANTA I HAD MOYA MOYA AND WAS GOING TO DIE. I HAVE HAD FOUR BRAIN SURGERYS TWO ON THE FRONT OF MY HEAD AND TWO MORE ON BOTH SIDES OF MY HEAD. I AM NOW 21 YEARS OLD AND I HAVE BEEN TOLD THAT I AM ALL BETTER NOW
HOLLY
TEMPLE, GA USA
Sunday, January 01, 2006 at 20:47:58 (EST)

 

 

 

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