Moyamoya.com
Internet support for those diagnosed with Moyamoya Disease

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

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

Let other families know you're out there!

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

Click Here to add your entry to the Guest Book!


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

gday everyone, Happy New Year from australia, we look like we will be having a good one, after 2 months in hospital in Sydney, my Nephew has had 2 bypass operations one on each side of his brain, he just got home on Christmas Eve and all is looking good he has a lot of swelling and has a few head aches but on the up side he is very well. I would like to thank you all for your prayers and support through this journey, and I wish you all the very best. Love to all of you and I will keep praying for you all.Regards Marg
Margaret Clarke <margclarke@aapt.net.au>
Adelaide, SA Australia
Sunday, December 30, 2007 at 00:21:49 (EST)

Hi. My name is Barbara. I am a 56 (almost 57) year old black female. Though I have had several TIA's, numbness in my right arm and leg and severe headaches - and forgetfulness, I have just had a thorough checkup with a specialist at UAMS hospital. He is very encouraging and after I get the information he has suggested, I look forward to more detailed information. Of course I looked to internet and found this wonderful sight. My thanks to each of your for your sharing and my prayers are with all of us. More of my sharing later. I'm going to rest now, I'm getting tired. Barbara bbhatchett@sbcglobal.net 12/22/2007
Barbara B. Hatchett <bbhatchett@sbcglobal.net>
North Little Rock, AR USA
Saturday, December 22, 2007 at 19:32:16 (EST)

i wouid like any imformation and advise you have on dealing with this condision. cause my 7 year old was told he might have it. plus he was born with cleft lip and palete. so it has been a long rode but i would not change him for nothing. we have done all the test and waiting to see the specialist.
sandra morgan <romero271@bellsouth.net>
sandyhook, ms USA
Thursday, December 20, 2007 at 23:30:18 (EST)

Hello, My name is Susie Yim. I was diagnosed with Moya- Moya during the year of fourth grade, I'm 19 years old. I didn't receive my surgical treatment in Standford stroke center, I received my treatment from Scottish Rite Childrens hospital. I was sick as a child with seizure, but as I got older I didn't have any problems until one day I fainted and I remember going to at least three or four different hospitals. I was grateful to find a doctor who helped me to survive this valuable life. I guess the symptoms for each child are different, but my symptoms wasn't as bad as the others. I'm a freshmen in college now and I'm living a wonderful life with my parents.I still do not know a lot about this rare disease that is why I wanted to do some research about it and I found this website. I hope that my story will help in some way.
Susie Yim <Sooooji@msn.com>
Alpharetta, GA USA
Thursday, December 20, 2007 at 19:22:56 (EST)

Hi there, My name is tom and I live in Howell NJ. I'm origibally from cedar grove NJ and have many friends and relatives in Nutley. Actually My fatherwas a teacher and coach in the High school for many years. I was diagnosed with MM almost 6 years ago following a bad stroke (doing much better now thank God). Please give me a call at 732-256-4090. I had my surgery in NYC. and have a lot to share with you. Don't be afraid to call! Take care, Tom G.
tom gallucci <tdgallucci@optonline.net>
howell, NJ USA
Friday, December 14, 2007 at 13:08:30 (EST)

My niece was diagnosed 12/10/07 with moyamoya in Antigua,WI She is to get a workup in nyc asap. Your information and courage are greatly appreciated. Thanks for sharing. God Bless you all.
michelle james <malmv28@yahoo.com>
bronx, ny USA
Wednesday, December 12, 2007 at 18:23:42 (EST)

Two days ago my sister went to the hospital and is now in a drug induced coma. She has moyamoya, this all new to us. Any help finding out this about this disease would be helpful. I would like to know if myself and my brothers should be tested for this disease?? My sister has never been sick in her life...our family doesn't understand, I'm just lost without her. Please, help us with any information. Thank you, Tammie
Tammie <mythart@windstream.net>
Morris, OK USA
Tuesday, December 11, 2007 at 20:10:34 (EST)

My doughter was diagnossed with Moya Moya on 9/7/2007. She has undergone one STA-MCA surgery to help whith her case. Her name is Andrea Carolin Garrett-McCoy and is 4 years old. She is due to have another STA-MCA surgery on 1/21/2008. All of our love and hope goes out to her, as well as anyone else who has moya moya - McCoy Family
McCoy Household <spidy1@cableone.net>
Texarkana, TX USA
Monday, December 10, 2007 at 22:27:23 (EST)

My 43 year old sister has just been diagnosed with MoyaMoya. She was in the hospital for about two weeks while all of the tests were being performed. They sent her home the other day and is now waiting for her surgery - it should be sometime around Christmas. Is there anyone in the metro NYC area that's been through all of this?
Genevieve <myjoyeter@hotmail.com>
Nutley, NJ USA
Saturday, December 08, 2007 at 23:24:56 (EST)

I want to thank you for your sight my friends son was diagnosed with moyamoya today and your sight has cleared up many questions. He is a 20 year old young man with Down's Syndrome and has been having TIA's for the last couple of weeks. Again Thank you for your site. Jeanne
Jeanne Samuel <jeamarha@gmail.com>
Riverside , CA USA
Friday, December 07, 2007 at 22:41:51 (EST)

hi i am very happy to hear your story because today i was told that in my MRA the Moyamoya disease came up now i am freaking out because i am 4 months pregnant and i guess nothing came be done yet well that is until i see my neurologist. enough about me thanks god you are doing well ang hopefully it won't happen again and thanks for your information.
yulemny colombo <jewelsunchin@hotmail.com>
ny, ny USA
Friday, December 07, 2007 at 20:36:52 (EST)

My best Friend ED had an event last week (stroke )and was diagnosed with MoyaMoya. We are all very scared but this site has helped me cope with some of my fears. He's recieveing great care in boston and since he has no computer there I am printing alot of this site for him to look at.Thank you all very much! Ken
Ken Vengren <KenVen99@aol.com>
Merrimack, NH USA
Monday, December 03, 2007 at 16:23:05 (EST)

Michael, I lived at San Ramon and currently moved to Portland OR for my work. We had a very similar situation. I would like to provide you with all the information that I can. Please send me a response back at my email address. Thanks, Jamir
Jamir Shaikh <shaikhj@yahoo.com>
Portland, OR USA
Sunday, December 02, 2007 at 21:15:41 (EST)

My nephew is having his first bypass on Tuesday at the Prince of Wales hospital in Sydney, then a week after he will have his second. He has been in ICU since I wrote in the guest book about 3 weeks ago, if you believe in prayer can you please mention James as we as a family need all the help we can get. Thank you all so much Marg
Margaret Clarke <margclarke@aapt.net.au>
Adelaide, SA Australia
Sunday, December 02, 2007 at 06:56:09 (EST)

Hi Micheal,My son has moyamoya he is 5 we found out this febuary and he has had surgery and doin well. Our email is left for you to contact us. xxx
nicola <martyandnicky@talktalk.net>
newcastle upon tyne, uk
Wednesday, November 28, 2007 at 06:06:18 (EST)

I am the mother of 14 month old baby.interested in knowing whether anybody knows about any doctor who has experience just not in moya moya but also in tortous blood vessels.
sunaina poddar <sunaina_poddar@rediffmail.com>
Hyderabad, Andhra Pradesh india
Sunday, November 25, 2007 at 08:17:40 (EST)

Michael, I just read your post aobut your 7 yr old daughter.My daughter was diagnosed 5 yrs ago at the age of 5(she's 10 now).It was a tough road but she's doing wonderful now.I didn't find a way to contact you on your post, I'll leave my e-mail for you if you would like to,feel free to contact me with any concers or questions I may be able to help you with.Many prayers for your family. mgrace5@nycap.rr.com Mary Grace
mary grace <mgrace5@nycap.rr.com>
albany, ny USA
Friday, November 23, 2007 at 09:47:33 (EST)

I m reaching out to the community of this website for support of my oldest daughter who was diagnosed with moya moya yesterday. On the outside Kendall is an extremely healthy and active 7 year old girl. Coming from the neurosurgeon s office at the Oakland Children s Hospital, my wife and I felt as if our heart s were pulled out and thrown across the room. To accept that the most precious thing in the world to us is under harms way is really taking its toll on us. We are taking the steps to have surgery scheduled before December 21st 2007. I would really appreciate if other parents that have been down this road to contact me. My wife and I are extremely scared of what the future may hold. Mike,
Michael Keyser
San Ramon, CA USA
Tuesday, November 20, 2007 at 15:40:17 (EST)

My 18 year old nephew is at present in Prince of Wales Hospital in Sydney, and after a lot of testing the DR think he might have MoyaMoya. The family will be having a meeting on Monday with a lot of specialists to decide what to do. He is such a good boy and he has just completed his first year at Uni and he has missed his exams. I tried to look up the disease and and there is not a lot on it so thank you for your story. Please if anyone has anything else about this can you please email me. I want to ask so many questions but I dont know if I want the answers. Thank You Marg
Margaret Clarke <margclarke@aapt.net.au>
Adelaide, SA Australia
Saturday, November 17, 2007 at 18:27:49 (EST)

Thanks for the informational site. My friend has MM and now I can better understand what she's dealing with.
Brion
Orange, CA USA
Thursday, November 15, 2007 at 18:09:13 (EST)

My son was diagnosed with advanced moyamoya in 2001. He has had 4 bypass surgeries and a stent put in his neck to open up his carotid artery. He was 11 when he was diagnosed with it and he is now 17. He has had about 10 major strokes and 1000's of TIA's. This year he got to play in a Jr. Varsity Soccer game at his high school. When he was diagnosed we didn't have much hope, now he is remarkable, he still has lasting efforts of some of his strokes, but for the most part his life is normal
Karla <stedebearknm@aol.com>
Clovis, NM USA
Thursday, November 15, 2007 at 13:50:47 (EST)

I am just updating on our 8 yr old son who was diagnosed with MM on March 22, 2007. Since our last post, Jose has had his bilateral MM surgery in California as is doing extremely well. His recovery was so fast, it was actually unbelievable. For all the newly diagnosed MM's and to the rest of us, keep your heads high!!
Daisy <dcordova75@yahoo.com>
Antonito, Co USA
Monday, November 12, 2007 at 22:29:32 (EST)

Where should I begin? I had a twin sister that was diagnosed with Moya Moya, she is now dead. She was diagnosed 4 yrs ago. She said that it would be impossible for me to have it, so I did not have myself diagnosed. Then at the beginning of Oct 2006 she had a small stroke. She was going to be okay. They decided to try another surgery on her, while under the knife she had a massive stroke, she never woke up and she died October 08, 2006. I lost my best friend and sister. During the week she had her mild stroke I began the testing. The doctors began testing me and rushing it. I found out 1 month later that I had the same disease. It was confirmed 2 months after that, when I went and saw the specialist in the field... It was the worst nightmare comes true. After that I was afraid and do anything about it. I was scared; I knew the end result and did not want that to happen to me. I didn't think my outcome was good. Until June came a long and I found out I had a tumor growing around my uterus and cervix. The doctor would not do the surgery, until I had a clearance from the neurologist. I saw my sister s doctor and he would take a look at my pictures. He called me a week later on a Thursday night at home. Telling me that I had to have emergency surgery and it couldn't wait. July 6, 2007 I had my left side done, and then on July 10, 2007 I had the right side done. Then 8 wks later I had the tumor removed and a full hysterectomy. I am doing fine, but they decided to do 2 more CTA tests again with dye. I am having some side effects, so we will see. Yes I am scared I am not going to lie. My sister has been gone from us for over a year now. I don't want to end up that way. But, I will continue to be strong as I always do. My bills are piling up. I am so far in debt from the surgeries and living off credit cards. I am just not sure how much more I can handle. The stress is over whelming. I am a single parent and that frightens me even more. My sister left 3 children and her husband has managed. What more can I say. Thanks for listening. Take care and would like to hear from others.
Shirley Dawes <californiablu2@msn.com>
Gilbert, AZ USA
Monday, November 12, 2007 at 02:30:03 (EST)

My name is Janette. I am 33 years old and Caucasian. I suffered a massive stroke at the age of 26 just after giving birth to my son. The doctors concluded that childbirth was the primary reason for the stroke. Since then I have had 2 more strokes, numerous TIA's and hemiplegic migraines. On October 21, 2007 I went to the emergency room while suffering one of my strokes. It was there that the doctors performed a CT on me. Of course they found nothing, until they did a CTA. That's when they found something abnormal and decided to admit me. After yet another MRI and MRA, I had an Angiogram. The neurologist on call happened to be from Japan and knew of this strange disease called Moyamoya. He asked me if I had ever heard of it. Of course I had not. He showed me the results of all of the scans run on my brain. In fact he said he saw it on the MRI from my stroke when I was 26. Now, I am happy that they know what is making me feel so run down all the time. I am scheduled to have a low flow STA-MCA bypass in December. At this point, they are hoping to only have to do the right side since it's more severe. But, until he goes in the doctor won't know if it's going to be necessary to do the right side. Granted, I have not ever had surgery before. Wouldn't you know my first would be on my head! I am just so glad to know that there are other people out there with this same disease, who have been through the surgery and are getting the help they need to get better.
Janette Sanchez <jsanchez74@charter.net>
Fort Worth, TX USA
Wednesday, November 07, 2007 at 10:17:38 (EST)

Hello again I have a little update on Tabitha,she is finally in pt and is being fitted for a brace. She is having a big problem with her red bloods cells causing her bone marrow to work over time. She is not going to school,she has to keep liguids down every hr. She has to see her nero doc in Jan to get another mra done. thanks again for the webb site. GOD Bless
Dianna <midfieldtax@bellsouth.net>
Bham, Al USA
Tuesday, November 06, 2007 at 15:39:30 (EST)

I am Cash Harpp's mom. He was diagnosed in Dec. 2006. This site has been amazing. We have come into contact with 3 families and have kept in touch since we met on this web site. We are anxious to find out if there will be another Moyamoya get together like last year. Our families are from IN, PA, GA, and WV. We were hoping to use the convention as a way to get together. I am willing to help with anything to get things started. Sincerely, Abbe
Abbe Harpp <abbelynne@sbcglobal.net>
Merrillville, IN USA
Monday, November 05, 2007 at 22:48:56 (EST)

On 23 September 2007, my wife of almost 31 years, experienced a massive cerebral hemorrhage. After getting her to the ER and having an angiogram, the Radiologist told me that she had Moya Moya disease. She was immediately taken to surgery to relieve the pressure in her brain and after 6 days in the hospital and 3 1/2 weeks in a Rehabilitation Center, she is home. She still is experiencing some cognitive problems, but she can walk, talk and most of all she is still with me. It has been a very difficult time for me as I basically stayed with her while she was in the hospital and most of the time while she was in rehabilitation. By the way, I must also mention that my wife is Japanese and until she had her hemorrhage, we were unaware of the Moya Moya condition. I have her home now and while she seem seems to be physically OK (other than having headaches and getting tired pretty easily), she is still having a tough time remembering things and sometimes she seems to 'zone out'..in other words, when we are talking, she seems to go somewhere else for a few seconds. The doctor tells me that this in normal in this type of brain injury and it is just a matter of time before she has a full recovery. But even if she has a full recovery, she still has Moya Moya...and I wonder what is next? Any comments or advice will greatly be appreciated!
Lige Hundley <l_hundley@yokowo.com>
Dublin, Oh USA
Thursday, October 25, 2007 at 21:29:05 (EDT)

Hi, It's me again. I'm really happy to have the exchange of experience here with MM disease. My son was suspected as MM paitent since July/2007 and we haven t stopped the examinations for him since then. Last week he performed a DSA (Digital Subtraction Angiography) and by mid Nov, we shall have the report and we might also know what will be the treatment for him receive the surgery or not necessary. May God bless us all!
Tina <tinapy@hotpop.com>
Macau, Macau
Tuesday, October 23, 2007 at 12:57:10 (EDT)

My daughter Jasmine is 13 years old and has Down Syndrome. On Sept. 14, 2007 she was playing like any other Saturday when she suddenly started thrashing on the floor and screaming. I thought she was having a seizure although she has not had one since before her first birthday. We went by ambulance to the hospital, had a CT scan and were sent by life flight to a hospital in Tulsa. The neurosurgeon called it MoyaMoya and said it is congenital. He also said sometimes these kids with Down Syndrome are just born with it and he said it is inoperable. Well, so far what I have seen here is that it has very little if anything to do with Down Syndrome and there is a surgery available. I don't really know what my next course of action should be. I am interested in all I can learn about this mysterious illness. Thank you, Tami
Tami Kalbrier <tkalbrier@sbcglobal.net>
Nowata, OK USA
Thursday, October 18, 2007 at 22:33:41 (EDT)

I was diagnosed it 2001 and have had surgery and was wanting to chat with peole like me
Jennifer
Hopkins, MN USA
Wednesday, October 17, 2007 at 22:05:12 (EDT)

My only son, Alexander was diagnosed with MoyaMoya last Friday at Sheffield Children s Hospital in England. Alex is 5 We returned from vacation in Mexico 6 weeks ago, and the following week he stopped using his right arm, He was in no pain and not complaining about it. My wife is a nurse, and new something was not quite right. The following day my wife took him to the GP and she said he had probably twisted his arm. The following day he lost the use of his right leg and was unbalanced. His speech was slurred. Again she took him to the GP, who this time referred him immediately to the local Hospital. He first had a CT scan which didn t show any problems, but he was kept in overnight, and many blood samples were taken. He was then referred for a MRI scan for the following week. Alex had a MRI scan and we received the MRI scan results a week later. We was told he had a narrowing of a artery in his brain, and that he had experienced a mini stroke. Again we were referred to a Children s Hospital. We met the Neurological Consultant last Friday at the Children s Hospital who showed us the MRI scan and explained the condition of MoyaMoya. We were devastated. We have now been referred to Great Ormond Street in London and are awaiting an appointment. Now the shock is over, we are all OK. Alex is going to school and is as happy as ever. We have seen a slight improvement in the use of his arm, and the leg and speech are back to normal. Its early days, but I m now reassured by reading all the stories in the guestbook, that there is still hope for our little boy. After reading all the stories in this guestbook, I thought id tell our story so far. This is the only real internet site where we have been able to learn about the condition and know that we are not on our own. There is no sites based in the UK we can find. I will add an entry after our next consultation. Keep up the good work!
Andrew Barraclough <andrew.barraclough@uk.atlascopco.com>
Derbyshire, UK
Wednesday, October 17, 2007 at 11:10:09 (EDT)

I have just been diagonised with moyamoya. I am waiting to get a call from Dr Day in Boston. Has any one used him for a bypass? How long did it take to set up your appt.? I am going nuts worring that I will have another TIA. I have called him 8 times am still waiting for a call back. Any one have a suggestion? Iris
IRIS <g74@embarqmail.com>
fort myers, fl USA
Tuesday, October 16, 2007 at 14:01:36 (EDT)

WOW! I can't believe there are SO many of us out here with MoyaMoya! I was diagnosied in March 04. Every Dr I went to kept passing me up to another Dr. None of them wanted to deal with "it" & the symptoms; saying I was TOO high risk! welll.. helloooo ! I was so very blessed to have found a stroke dr up in Chicago @ Univ of Chgo Hosp, Dr Brorson. What a GOD send to know I wasn't going crazy thinking all the stuff I was going thru was just in my head.. ok.. it was & is.. but at least had a name for it! I know so many of you can relate to that one. I have small mini strokes every day now. A new Dr closer to home has me on Welbutrin & Cymbalta to counteract each other; they helped for a while, but now nothing. I can't focus, get motivated, wanna sleep A LOT!, no energy, feel so all alone. But now I know I'm not.. I also suffer from Osteogenesis Imperfecta (brittle bone disease), but Dr's around Chicago don't know if the 2 may be related. Also found I have a blood clot on each side of brain, & the arteries in the back of the head called "the circle of Willis"-the left side artery is totaly missing.. go figure that one. I just wanna give up at the age of almost 50 but have 2 wonderful teens that need their mama. That's what keeps me going. Anyone out there wanna chat sometime or email.. please don't hesitate to reach me. Many blessings to everyone & their loved ones.. susan rita
Susan Hathcock <suhathcock@sbcglobal.net>
mchenry, il USA
Monday, October 15, 2007 at 23:20:38 (EDT)

Hi, my son is 1 years old. He had pial synangiosis surgery in Boston in Feb 2007. He has had a difficult seizure problem. They have been under control since April and he was doing great since then. Oct 8 we brought him to his Hospital in Philadelphia due to abdominal swelling. He has developted ascites. They believe it is due to some other abnormal vessel in his abdomen. I just need to know if anyone experienced this. They said this is really rare and are still trying to come up with a diagnosis. Please pray for our little guy he remains in ICU. Any info please email me...
Amanda <mandyz94@verizon.net>
Auburn, PA USA
Friday, October 12, 2007 at 10:25:14 (EDT)

Hi all I know its been a longtime since I have been on here. But I am still alive..Lots has happened since i have been on here..Chad and i got our own place with the boys, I got my SSDI and SSI approved finally. I was on Lunesta for sleeping for mind racing and I got the results from my surgery that I had in Boston on Jan 2006.. Well, where to begin..My son had his apendix out and i was at the hospital when Chad got the Call from Dr. Ogilvy saying that since the surgery and testing that there was no change and no new growth of the arteries and vessels in my brain..but the upside to that is that the surgery but my MM in some type of remmission like cancer, It hasn't gotten any worse or any better since May 2005 to present I have had 13 TIA's and 3 seizures. Which was expected. I had my most recent TIA about a month ago..Now getting back to myself as much as possible. But i wanted to let everyone know that I am still upright and breathing LOL Love to all!! If anyone has any questions PLEASE don't be afraid to ask ok?
Laura Stevens <hell_bytch_1@yahoo.com>
Waterville, ME USA
Thursday, October 11, 2007 at 11:13:55 (EDT)

My name is Linee. I have had 2 major surgeries for moyamoya revascularization. I have had major problems after the two surgeries.I have been though alot and I can see alot of people have gone though what I have too,and im happy to know I am not alone.So if you have and questions or would just like to talk please feel free to e-mail me.
Linee Moniere Brouse <LineeMoniere@yahoo.com>
Potsdam, NY USA
Tuesday, October 09, 2007 at 15:04:12 (EDT)

My daughter, Emma, who is 8 years old was complaining of headache for 4 days with some nausea. She told me a few times that she was tripping or falling over when she walks but we, her parents, didn't notice it until today. She went to school saying her stomach hurt, pewked all over herself in class, and then when we immediately picked her up she had serious balancing issues. She is tripping on her left foot and unable to balance standing up. She has some mild slurred speech and one pupil is dilated slightly. We went to the ER. HER DAD HAD MOYA MOYA AT AGE 8, ,so we're insistent they rule that out. The doctor said the MRI came out perfect but no MRA or angiogram was done. They wanted to send her home but agreed to keep her for observation. A pediatric neurologist will see her tomorrow. Anyone have any good advice? What other tests could or should be done? Are we overreacting to insist on other tests when her dad suffered with the same thing at the same age?
Sondra Brown <jaredtbrown@surewest.net>
Granite Bay, CA USA
Monday, October 08, 2007 at 21:02:39 (EDT)

I was just recently diagnosed with moyamoya after a cerebral angiogram.I suffered a stroke two years ago and after an MRI my neurologist suspected moyamoya but without cerebral angiogram they cannot diagnose. As recently, three months ago, I started manifesting some weird symptoms. I started to feel like I'm going to faint. I started having tremors, and having memory lapses. So I went back to my neurologist, and that is when he suggested the cerebral angiogram, which confirmed the diagnoses. I had consulted two neurosurgeons, both suggested surgery. One suggested immediate surgery; another said that it didnt have to be done yet. I would like to know what could possibly happen if I don't do surgery now. Do you have an data that suggests, that if you don't do surgery immediately, that it could progress quickly? I don't know if I should contact Dr.Steinberg, who was mentioned in this web page. I also don't know if he accepts my insurance. I'm concerned with the symptoms, because of the job that I do. I need to be focused. I work with people everyday, and I also work long hours. Please e-mail if you have any ideas or suggestions.
munchkjn <bkzniceguy718@hotmail.com>
Brooklyn , NY USA
Sunday, October 07, 2007 at 23:32:47 (EDT)

Hi people! My name is Daniela, has 23 years and has one year was diagnosed with Moya Moya. In March I made the surgery here in Brazil, that from there uses one different technique of the U.S.A. Here the doctor makes some punctures in my head and is necessary only one surgery. Today I am very well, but at the time where I discovered, it had made wrong treatment with remedies and I had ischemic and much migraine. Kisses. Daniela (it forgives the bad English)
Daniela Bravalhieri <danielabraval@hotmail.com>
Bauru, São Paulo Brazil
Saturday, October 06, 2007 at 13:30:48 (EDT)

Hello. Just wanted to say hi and share a quick story with you all. I to have moyamoya and my surgery was almost a year ago this month. It was on my left side. Went in on a Monday morning at 5:30 and surgery was scheduled for 7:30. I went to the ICU unit about 10:30 that evening and not even 2 days later I walked out of Vanderbilt hospital here in Nashville. Not only that my Dr.s name was Dr. Mericle. He truly was a mericle....So you see there is hope out there...I have 50-70 % blockage on the right side now. But surgery is not scheduled as of yet. I'm doing just fine right now they say. Prayer definetly does help. I wish you all the best. Please think positive and don't ever ever ever give up with this nasty disease....God Bless all of you.
Tresa Overstreet <tj98809@bellsouth.net>
Nashville, Tn USA
Friday, October 05, 2007 at 23:38:03 (EDT)

I am Vietnamese and I had 2 surgeries 17 years ago when I was diagnosed with MOYAMOYA. But recently I have 4 episodes of vertigo and imbalance. I am still in the process of investigating. Has anyone in similar case and who has any problems after the STA-MCA by pass?
Amy
MELBOURNE, VIC AUSTRALIA
Friday, October 05, 2007 at 03:48:38 (EDT)

My name is Kathy, I'm 28 yr old and live in Shanghai China. My mother was diagnosed with internal brain bleeding 2 days ago. The cause of the bleeding remains uncertain till today. After several rounds of tests, the NMR results came out as suspicious Moyamoya. Today I had a brief chat with one neurosurgery specialist of the best & biggest hospital here in Shanghai, and that was my first time to hear the word "Moyamoya". As I was told this disease is a born disorder, I raised a question as if it was inheritable. (My grandmather was down by a major stroke in her late sixties, and several small strokes happened ever since that. ) The specialist didn't answer my question directly, but suggested me check on the internet myself. I'm a little scared by what I saw online.But all the Chinese website can only provide limited information regarding Moyamoya. I'm lucky to find this site, and after read thru DJ's story, I'm planning to have a complete check on myself ASAP. I've been suffering from terrible headache since my childhood, and I'm experiencing worse & worse memory problem recently. My mother is fine now as she has no trouble with talking, walking and everything else, but she was suggested to remain in bed for recovery for at least the coming 2 weeks. And DSA would not be safe till her total recovery. Given her age and current status, I really don't think DSA is a good idea now. But hopefully I can book an apointment with the neurosurgery very soon to get the diagnosis on myself.
Kathy <kathy.shen.ks@gmail.com>
Shanghai, China
Thursday, October 04, 2007 at 12:15:18 (EDT)

Hi. My name is Kim. On Halloween night 1985 I had a major stroke. After months of having test run in the hostital the doctors decided that I had MS. My father went and found a MS specialist in Houston Tx, which is where he lived at the time. After several more months the doctors gave my family the news that I had Moyamoya. I ended up having two bypass surguries, one on each side of my head. A long story short, I'm now 35, and have three beautiful girls of my own. I have limited use of my left hand because of the stroke, but other than that I live a normal life.
Kim
Batesville, Arkansas USA
Tuesday, October 02, 2007 at 17:23:57 (EDT)

Hi my name is Stephanie and my husband was just diagnosed with moya moya disease last week. My husband is 25 an he has blockage on both sides of his brain. The only reason they found it was beacuse a blood vessel in his brain ruptured causing hemmoraging. He is due for his first surgery the end of november and the next 2 weeks later. I really don't know much about this disease and the doctors are baffled about how he came to have it. He is a perfectly healthy guy with no medical problems. The doctors couldn't give me much information on it b/c they really haven't dealt with it much. If anyone has any information that could help me understand this more I would really like it.
Stephanie <obsweetie@hotmail.com>
Byhalia, MS USA
Monday, October 01, 2007 at 15:46:06 (EDT)

My daughter is 4yrs old and has moyamoya she is facing surgery in Oct. 2007 at the Cleveland Clinic I am really scared that i will loss her she is my life i waited for 9 yrs for her to come along i could use some support here you can e-mail anytime and i will check my e-mail in the evening. If any of you have any information on mitrochandrial disease or the vonwillebrand disease please let me know for my daughter has both of those including moyamoya. thank you christa in WV
Christa Brosius <ChristaBrosius_71@yahoo.com>
Duck, WV USA
Sunday, September 30, 2007 at 16:47:01 (EDT)

what happens if surgery is not an medical option
mo <alsfordmv@hotmail.com>
maryborough, qld australia
Thursday, September 27, 2007 at 23:05:44 (EDT)

I was diagnosed with MM in 1999. I went to the ER complaining of a major headache I had for several days in the front of my head on my forhead. After testing they sent me to Mayo Clinic in Rochester Minnesota. That is where I was diagnosed. I have had 20 strokes that has left me visually impaired. I can no longer work and I'm afraid to have the surgery due to I was told I could have more strokes that could make my condition worse. They put me on seven types of medicine. I haven't had a stroke since 2000. The doctors said that my end of life would be a massive stroke. I wish there was something doctors could do to let me live a long life with my wife and children. I have learned to enjoy everyday as if it were my last. God Bless those with Moyamoya.
Gary <g.brend@cox.net>
Wichita, KS USA
Thursday, September 20, 2007 at 16:21:38 (EDT)

I just was looking up information on this rare disease. I have a close friend whose mom was just diagnosed with this, and she wanted me to look up as much info as possible. Her mom is like a mom to me, and im hoping this website informs me alot. Thanks and god bless.
Marisa <xorisanowaox@epix.net>
nicholson, pa USA
Wednesday, September 19, 2007 at 23:10:22 (EDT)

I quick question- My 5yr old son has had surgery on left side and does need further surgery on right side but unsure as when. Is it normal to have headaches most mornings and afternoons also he is very tired during the day. My doctors are very good but know little about moyamoya and whats normal in life with moyamoya I am just learning myself. Thank-you.
Nicola Docherty <martyandnicky@talktalk.net>
newcastle, uk
Tuesday, September 18, 2007 at 09:11:35 (EDT)

Hello, everyone! I am a previous MoyaMoya patient, 14 years old. For those of you that have kids or teens who are diagnosed with mm, I have created a website specifically for mm kids and teen patients. If they have access to the computer/internet and with parents' permission, they could visit my website at www.freewebs.com/moyamoyalakidsteens and read about my story, learn what they need to know, and communicate with other patients their age. thank you!
Breeana <bbjohng@yahoo.com>
CA USA
Saturday, September 15, 2007 at 18:10:23 (EDT)

My 4yr. old neice will be having surgery on tomorrow.She was diagnosed with mm in March 07. She has had 2 massive strokes and several ministrokes. She suffered a mild stroke on Sunday which affected her vision. The doctors don't want to keep waiting around. My neice seems to be in good spirits even though she is too young to understand what's going on. I'm a little nervous right now. But I have faith in God and I have confidence in the neurosurgeons.
Angel <afcorp2003@yahoo.com>
NC USA
Thursday, September 13, 2007 at 16:51:13 (EDT)

Hi my name is Liz. I have decided it is time I put a letter onto this site as 2 people have emailed onto this site and have thought there are no other people in New Zealand with moyamoya disease. There definatly are.If anyone from here reads this please feel free to email me and have a chat.I have contacted 2 others from here so far so thats a good start.My daughter has moyamoya. She was diognosed at 17 yrs old. She is now 26 yrs old. She has had the bypass surgery at 18 yrs and some other burr holes done since then. She is doing great.There is a neurosurgeon in New Zealand that specialises in moyamoya disease. So there is hope here. Kindest regards Liz
Liz Cleaver <peza@xtra.co.nz>
Taranaki, New Zealand
Thursday, September 06, 2007 at 20:28:53 (EDT)

Hi, I had STA-MCA bypass on the right on July 25th and then an EDAS on August. During the diagnosis process the ENT MD used my Left STA for a biopsy to rule vascultitis, so I had EDAS. I am healing well. Sometimes my words come out a scrambled, especially if I am tried. I know when it happens and I usually correct immediately. I can't go back to work til Sept. 17th, so I gonna go to Alabama and see my grandkids for a couple of weeks. Prayers for all.
Suzan Holsomback <suzanholsomback@verizon.net>
Blythe, CA USA
Thursday, August 23, 2007 at 09:32:10 (EDT)

Hi everyone, my name is Debbie and I'm a 39yr old female who has just been officially diagnosed with unilateral moya moya. So far it's just on the right side. I feel like i've been diagnosed with everything under the sun until now.. This all started a year ago with numbness and tingling of my face, hands,stomach and migraines after working out. I went to the er after a soccer game because my vocal cords, throat arm and hand became paralyzed. the feeling returned by the time i got to the er. the began treating me for stroke with aspirin. they took me off the asoirin in August when one doctor decided that nothing was wrong with me. In September i returned to work within a week i began to lose the use of my hand over a weeks time, one finger at a time. not realizing what was wrong with me i continued to get up and go to work every day until a coworker pointed out that i should see a doctor because there had to be something seriously wrong. my doctor was able to get me into a neurologist within a couple of days. the neurologist was sure i had MS until i didn't respnd to treatment. he sent me to an MS specialist who was certain i had MS and began sending me for several different tests to rule out stroke.Finally on January 29,2007 i had an angiogram which showed the blockage. i met with a stroke specialist in march who mentioned moya moya but i had no clue that it was actually a condition i just thought that was the term they used to describe the angio picture. it wasn't until mid may when i met with the surgeon that i found out what it was. I as well thought it was called maui maui. the diagnosis changed again i was told it was not moya moya but just a dissected artery and both neuroradiologists that saw my mri and angio agreed. i then met with the surgeon as i already had the appointment scheduled. i was so thrilled i thought he was going to tell me to go home and start living a normal life again. i had a ct perfusion test done at the end of June. once again because it was already booked and they wanted to publish the findings because of the difficulty in diagnosing. i got to the surgeons office. He did not agree that it was a dissected artery and while my husband and i waited from 10:30am-3pm he consulted with two different neuroradiologists who agreed that this was moya moya. the results from the ct perfusion also showed that i have only 50-60% blood flow on my right side. I am having an STA-MCA bypass done. in fact my surgery was scheduled for tomorrow but it's been postponed until Sept 11 as he has someone else who needs surgery on an urgent level. Also the surgeon Dr. John Sinclair trained under Dr. Steinburg at Stanford so i'm very confident things will go well. He also seems that he knows what he's doing. i'm very excited about this although i will probably be terrified just prior to the surgery. i hope i'm able to connect with a few people who know what i'm going through. i'm from a small town and pretty much no one has heard of moya moya until me. thanks for listening Deb Smith debjeffsmith@xplornet.com
debbie Smith <debjeffsmith@xplornet.com>
Lyn, ON Canada
Wednesday, August 22, 2007 at 09:36:23 (EDT)

When I first heard the word "MoyaMoya" from my son's doctor, I can't believe that my son had got this disease. Then I search the internet and found this webpage. This is a rare disease that I really don't know from where I could get started the information. I think more families from here can help me. Keep in touch and email to me all about MoyaMoya. Thanks
Tina <tinapy@hotpop.com>
Macau
Monday, August 20, 2007 at 08:28:15 (EDT)

Hello everyone. My name is Jackie. I am a 47 year old mother of 2 and was diagnosed with MM about 2 years ago. At first the doctors thought I had MS. After the birth of my first child in 1989 and a million tests later the doctors thought I had MS. I had temporarily lost feeling in my leg and arm. On a routine follow up MRI they discovered the "puff of smoke". Lately I've had the feeling of being not exactly dizzy or light headed but sort of like I m walking around with my head in a tank of water. I have been aware that there s successful/available surgery but have been afraid to have it done. In light of my new symptoms I am reconsidering and appreciate this website and all the info it offers. Thanks again and good luck to you all.
Jackie <jaxs59@optonline.net>
bethpage, ny USA
Monday, August 13, 2007 at 02:01:09 (EDT)

After many bumps in the road, which included the professor and only man for the job in the entire country, going under the knife himself, two weeks later Leo's EADS finally went ahead on August 7 at Sydney's Children's Hospital in Randwick. All went well and the medical team were very happy at the way Leo bounced back so quickly. They now plan to repeat the spect test and if circulation looks improved on the right side of the brain they plan to do it all again around December on the left side. Thanks to all who wrote and sent well wishes, Leo Lagana and family. A special thanks to the Kidzwish foundation and Wollongong Limousimes who ferried us up and back even for the false alarms and the American Potentials Foundation who supported us from so far.
Pauline Lagana <pauline_lagana@hotmail.com>
Kanahooka, NSW AUSTRALIA
Sunday, August 12, 2007 at 21:17:37 (EDT)

Hello everyone. My name is Holly, I'm 21 years old and have just been diagnosed with Unilateral MM. I had a stroke when I was 13 and to make a long story short there was a disagreement as to whether or not my stroke was due to MM. For the past 8 years my family, myself and my doctors have believed that my stroke was a spontaneous happening. That was until I had an episode this week that landed me in the ER. I had a small bleed in the basal ganglia that caused edema to form around it compressing the nerves to the right side of my body. After having an angiogram the doctors believe that the previous diagnosis of MM was correct and that my stroke was not merely a spontaneous occurrence. Although I am relieved to know that my condition has a name it scares me to think that for the past 8 years my condition has been progressing and it wouldn't have had to if it had been caught. Anyway I am glad to know there are others with this condition.
Holly <hollywood515@hotmail.com>
ND USA
Saturday, August 11, 2007 at 18:59:57 (EDT)

I just had the right side done at Stanford by Dr. Steinberg and company. Everything went wonderful and I will be going back next week for the left side. I was diagnosed in late May of this year with bilateral MoyaMoya, prior to that I had never even heard of it and I have been a nurse for a long time. Prayers for everyone in need.
Suzan Holsomback <suzanholsomback@verizon.net>
Blythe, CA USA
Sunday, July 29, 2007 at 06:23:16 (EDT)

My daughter is 5 years old and was diagnosed with MM in May 2007. She began having seizures in August 2005 and doctors thought they were childhood focal seizures. But last October her seizures became different. We and the doctors passed them off as small breakthrough seizures. In late January 2007 we found her lying face down on the ground alert but she could not speak or stand. We had an appt early in February with MRIs and EEGs to follow. When they came back abnormal, they sent us for an MRA and that is when she was diagnosed with MM. We were then sent to Augusta, Medical College of Georgia, to consult with a neurologist. Long story short, we did an angiogram on July 9th and the doctors perfomed the EDAS procedure on July 17th. She is doing awesome. Withing 48 hours of surgery she was in the hospital playroom playing air hockey and basketball. We were really unsure as to what to expect in the way of recovery. She has managed her pain with tylenol only. She did try some heavier pain killers right after surgery, but they made her sick. This website has been helpful in compiling information and putting it in simpler terms. Thanks
Kim <nick_kim@bellsouth.net>
Valdosta, GA USA
Thursday, July 26, 2007 at 21:28:53 (EDT)

My neice was diagnosed with mm in Mar.07. She has suffered two massive strokes and several ministrokes. She is experiencing involuntary movements in her left hand. Both of her arteries are blocked on both sides. So she is facing two surgeries. She will meet with her neuro. on next week. My neice's parents are going to be asking alot of questions. They want to make sure they get the right team of doctors to perform my neice's surgery. My neice is currently undergoing speech and physical therapy. I sometimes wish I could trade places with her. I don't want to see her have to go through this surgery. But if that's what it takes to make her well then so be it. I am contact with others whose children are suffering from this disease. It helps alot to have someone to talk to who have gone thru this disease. Please email me if you know of a young person who has gone thru this surgery. I know every experience is different. Praying for all.
Angel <afcorp2003@yahoo.com>
NC USA
Thursday, July 26, 2007 at 11:40:32 (EDT)

Hello everybody, my name is Daniel and I am from Germany. It´s good to know that i am not alone . In march (this year) the doctors said that I have MM and I was shocked. It started with .........I couldnt move three fingers from my left hand..... same like DJ´s sympthoms. With 2years I hab blood-cancer and so MM is because-off radiation. Now I am 22 years old, had 20Years a great normal life and now that. At the end of august i will speak with the doctors of University Duesseldorf because of a bypass at the of 2007. I am very afraid and I could cry often, it`s very hard for me...........I am happy that most of you doing fine.God Bless And Thank you for the website. bye daniel
daniel <golfstar00@yahoo.de>
Mönchengladbach, Germany
Wednesday, July 25, 2007 at 04:52:04 (EDT)

Hi, I was diagnosed with MM disease this year in May. I have been having multiple TIAs since April 2004 and after a second Angiogram and Brain Spect, it was confirmed that I have MM. The illness caused the stenoses on both the right and left of my Middle Cerebral Arteries (MCA). I've done STA-MCA bypass on the right side just last week on 18th July and I'm recovering very well. The next surgery is scheduled to be in 6 weeks time but we have not fixed the date. For the left side, the plan is to do an indirect bypass, most likely EMS. After the surgery, i'm now taking Aspirin and Phenytoin (anti-epilepsy). I was on Warfarin for the last 3 years. I'm 31 years old this year, Chinese living in Singapore. I wanted to share my story so that in the event that there are MM sufferers in Singapore, they can contact me and we can form a small support group. It has been a long journey of acceptance from the moment i had my TIAs till i had my surgery. In all of this, i've grown better as a person - more mature and accepting of what life has to offer. I'm grateful to have the chance to get treatment before I have a permanent disability. My recovery from the surgery has been smooth. Please email me if you'd like to know more about my condition and treatment. Cheers. Winifred
Winifred Ling <ling.winifred@gmail.com>
Singapore, Singapore
Tuesday, July 24, 2007 at 01:35:15 (EDT)

Hello, We live in New Zealand and our daughter Rachell is 14 years old, she had a brain tumor at age 5, after surgery she had 6 weeks of radiation, she had kept well for the past few years, until March 2006 when she suffered a mini stoke and in April 2006 suffered a major stroke effecting speach and right side arm. After MRI scan it was confirmed she has Moya Moya disease. She had right side surgery in May 2007, and is doing very well so far. - This is a great sight as very uncommon in New Zealand, so have no support from any other families - are very interested in speaking to others with similar situation.
Leanne <prestfamily@xtra.co.nz>
Auckland, New Zealand
Saturday, July 21, 2007 at 07:52:46 (EDT)

Hello again, This is a little update on Tabitha Thrasher my grandaughter Tabitha has medicade and since she does , she is treated so unfairly by the system. She has been needing pt forever and here in Alabama it takkes foreve. Tabitha is also mentally impired diagoined by the Sparks Clinic in Alabama. To me Tabitha's condition has became worse. I will give my life if she could get better and be a normal child, she loves life so much. God Bless And Thank you for the website.
Dianna Hartgrave <mudfieldtax@bellsouth.net>
Birmingham, Al USA
Friday, July 20, 2007 at 11:55:26 (EDT)

I am a 42 year old wife and mother of 3 who was diagnosed with MM 2 years ago. My Dr. at University of Illinois at Chicago is Dr. Fadi Charbel. I had my first STA-MCA bypass 8-05. The original plan was to follow with the right side bypass 30 days later, Unfotunarely I wound up with an infection of the left side and had to have the cleanup surgery in 9-05. The right side bypass was done 90 days later in late 12-05. Feeling great now , however in 11-06 had a heart attack they say was due to the MM. A stent was put in and had an angio where they found the left bypass is now not working at all, however the "normal way of flow" is working about 60%. I am to watch for original symptoms like memory loss and poor eyesight and small stoke like symptoms returning. And be honest about them when they return. Then we will go back to the drawing board bypass wise I guess. I hate to put my family through this again,but I know they would rather have me with them than without. Has anyone out there had to have repeat surgeries? How did that go and how far apart were the surgeries? Last but not least Lisa if you are still out there give me a ring.
CINDY HILL <Chill52003@yahoo.com>
VALPARAISO, IN USA
Thursday, July 19, 2007 at 20:53:51 (EDT)

hello everyone guess what savannah will be stroke free for 2 years on aug 12 2007 im so happy she is doing so great she is a/b student in school some people celbrate ann birthdays are birth of a new baby but we count each day as a new day for us a new day that is stroke and seizure free i thank god for my angel even though she has been sick since she was 14 months and has had 10 strokes iwouldnt take a perfect healthy baby for her i love her the way god give her to me she has taught me so much in life and its to short she has taught me to be more patient and kinder.for her to have been whats she is been thur she so patient and easy going she is so layed back but the most important thing about this moyamoya is you have to drink alot of liquid and the more you drink the better off you are and make sure you take your asprin every day she doesnt let to much bother her. again i cant thank dr michael scott and most of all god enough for taking care of my littlt angel they both are the best i love you both. the abbruzzo family.
TAMMIE <BRUZZERMTJS@AOL.COM>
SPRINGVILLE, AL USA
Wednesday, July 18, 2007 at 01:19:35 (EDT)

My 5 years daughter had the 1st left side surgery in Korea. The 2nd surgery will be done in 8/7/07 at Severance Hospital one of the best hosp for moyamoya disease in Korea. We are living U.S.A. however, we decided to come to Korea and had the surgery because of many reason. I read your web-site and there is the best doctor in USA too. How can we contact them? We pray every moment.. please help..tks.
smilesunnie <smilesunnie@yahoo.com>
fullerton, ca USA
Monday, July 16, 2007 at 02:01:04 (EDT)

I am sitting in a hospital now with my 7 yo nephew fighting for his life and just found out that he has Moyamoya. Please send us any infro you can on this to my email address. We can use all the infro and help now. Please keep Darin in your prays. He has suffered a stroke at 3 this morning. He has been having strokes all along and no knew. But this one is a big one.......Thank you, Kay
Kay Samz <irish4754501@yahoo.com>
Rhinelander, WI USA
Saturday, July 07, 2007 at 18:12:50 (EDT)

Iwas wondering if there are any foundations formed for moyamoya research. Ever since my son was diagnosed at 7 month old, it has been in my mind to find out. If nobody knows of any, would anyone be interested in starting one, or doing something regional or something like that? Sincerely, Abbe Harpp
Abbe Harpp <abbelynne@sbcglobal.net>
Merrillville, IN USA
Friday, July 06, 2007 at 17:44:46 (EDT)

Update- Leo will be undergoing surgery on July 17. Thanks to all of you that reponded and helped my husband onto the same page, making it all possibile. GOD BLESS! Pauline Lagana
Pauline Lagana <pauline_lagana@hotmail.com>
Kanahooka, NSW AUSTRALIA
Thursday, July 05, 2007 at 21:36:26 (EDT)

Can anyone tell me what to except after surgery? My six year old daughter has moyamoya and has had some issues since surgery but we don't know what all to except, like will her learning suffer. Thanks, Rebecca
Rebecca <rebeccaledkins@yahoo.com>
Richmond, Tx USA
Thursday, July 05, 2007 at 01:32:26 (EDT)

Unbelievable! I watched the Discovery Channel last night and I do now believe my son who is 27 yrs. old, has Moyamoya and not Cerebral Palsy!! I am dumbfounded because other than the back and forth eye movement (which I could of forgotten after all these years, he has all the other classic symptoms, especially the uncontrolling crying and the arms and legs stiffening, and he is paralyzed on his left side and suffers from learning disabilities. Of course they crying and stiffening are gone now due to his age. Is there a specific test that doctors can do to distinguish if it is indeed Cerebral Palsy or could it be Moyamoya? Please get back to me. I live near the best hospitals in the country (Boston). Thanks so much.
Deana
MA USA
Wednesday, July 04, 2007 at 02:18:54 (EDT)

My 4 year old neice was diagnosed in March 2007. She suffered three strokes. She is currently undergoing speech and physical therapy. Thankfully, she hasn't suffered anymore strokes since her intitial strokes. She is scheduled for special testing MRI? on Friday. Then she will see her neurosurgeon the preceding Friday. I really don't know when or if the doctors will perform surgery. I can tell you this disease is scary. My neice has to be constantly watched. I will continue to pray for all who are affected by this disease.
Angel <afcorp2003@yahoo.com>
NC USA
Tuesday, July 03, 2007 at 15:47:32 (EDT)

My 4 year old neice was diagnosed in March 2007. She suffered three strokes. She is currently undergoing speech and physical therapy. Thankfully, she hasn't suffered anymore strokes since her intitial strokes. She is scheduled for special testing MRI? on Friday. Then she will see her neurosurgeon the preceding Friday. I really don't know when or if the doctors will perform surgery. I can tell you this disease is scary. My neice has to be constantly watched. I will continue to pray for all who are affected by this disease.
Angel
NC USA
Tuesday, July 03, 2007 at 15:46:12 (EDT)

Hello When my granddaughter Tabitha was born she was born with the blood disease phersysotis she was having many tia which were diagnoised as seizures when she was 3 she had her stroke then she was diagniosed as having moyamoya. She had her spleen removed because of her blood disease and her gallbladder. Tabby has been on asprin theapy since her stroke. For 4 years she has had many headaches and trouble walking and talking. The doctors here in Alabama has never mention her having brain surgery. If anyone can help us understand more please email me back God Bless Everyone On this web site
Dianna Hartgrave <midfieldtax@bellsouth.net>
Birmingham, Al USA
Tuesday, July 03, 2007 at 14:15:39 (EDT)

I was diagnosed with moya moya disease in 1980. It was definetly a struggle to have the Doctors and hospitals to believe I had a serious problem. They all believed I was a hypocondriac that I was experiencing "Migrains" being hospitalized after a week of observation and testing they made me go home telling my parents that they could find nothing wrong with me. After being released approximately a week later I had a major stroke. Went back to the emergency room, they readmitted me into the hospital. I had another CT scan. I was blessed to have a wonderful Neurologist take on my case, Dr. Victor Robert. He had told me on the previous CT scan that I had done there was no signs of a stroke, but the one that was reviewed at this time was showing that I had a major stroke. Had surgery in Orlando, a couple of months later. With post angiography's there was little improvement from the bypass. Dr. Robert referred me to Shands Teaching Hospital, in Gainesville Florida. To a wonderful Neurosurgeon Dr. Aurthur Day. When he had me walk down the hall in his office, and the exrays of the angiography, he told my parents that I needed another surgery. To make a long story short I had 4 different procedures. The last one was when they removed a bloodvessel in my leg to do the bypass with. In conclusion I am a 48 year old survivor of this disease. I have some residual effects from my stroke, my mouth is droopy on one side and my temporalis muscle was severed so I cannot raise my eyebrow, but overall I am very proud of my outcome I had attended school at age 46 and was on the Presidents list for 3 quarters and on the deans list for 1, my intelligence level has not been sacraficed. Hopefully this will be a ray of hope for parents that have children diagnosed with this disease "good luck" please contact me if you have any questions.
peggy wolfe <johnnastarr1@hotmail.com>
apopka, fl USA
Tuesday, July 03, 2007 at 07:20:59 (EDT)

We live in Richmond, Tx. outside Houston, tx. our 6 year old daughter was diagnosed in March 2007. Is there any support groups in this area? Thanks, Rebecca
Rebecca <rebeccaledkins@yahoo.com>
Richmond, Tx USA
Monday, July 02, 2007 at 20:02:41 (EDT)

Just checking things out. My wife is in the process of being diagnosed with Moya Moya. 95% sure that's what it is. From all the info here and other sites sounds like surgery is the way to go. Thanks for the info. Jeff
Jeff Miller <jeff1583@msn.com>
Portland, Oregon USA
Monday, July 02, 2007 at 18:32:30 (EDT)

Hello my name is Rebecca. My first thought when I found this website was where were you eight years ago? It was discovered that I had Moya Moya in 1999 when I was 13. Although I did have a stroke when I was eight years old it went undiscovered. For three or four years I suffered with the condition. In England this meant that the affects of the condition happened whilst I was doing my GCSEs. However it was my first year at college that the worst. I suffered very badly during this year. The affect of this was that the only way for me to continue college was to have the operation. I am not what operation I had, at least in its technical name anyway. I had the operation in the summer of 2002. That September after recovering from the operation I returned to college and despite the college I got my A levels and went on to University. I now have my degree and have thankfully not suffered from any symptoms of the condition after the operation. I would like to say thank you to DJ for this site and good luck to everyone else who has the condition or knows someone with it.
Rebecca
UK
Monday, July 02, 2007 at 14:41:46 (EDT)

Hi, my son had extracranial-intercranial bypass 3 weeks ago and is doing great now he is back to school and his cheeky self. He is now on asprin for life and will eventually need surgery on right side but not yet. He lost the use o