Finally, got approval for Tyler to go to CA for his surgery. We have to be there June 16th and the first surgery will be the 18th. The second surgey will be...
What great news. We will be thinking of you and praying for Tyler. Keep us posted. Heather (Mom to Erik-7 1/2yrs and Katie 6 yrs both with Moyamoya and big...
My niece of 20 months was diagnosed with Moya Moya yesterday in the UK. Do any of you have websites for US treatment centres with # of operations carried out...
Olive, www.moyamoya.com is a Great site for support and info. There are links to other sites, however I'm not sure if the numbers are posted on any of them. I...
Rena, Thanks for this. Sorry to hear about your son and the best of luck for june 18th. Are you based in the US or are you travelling to the US for surgery? ...
Hi Olive -- my five year old son was recently diagnosed with moyamoya & operated on by Dr. Scott in Boston only 3 weeks ago. [We live in Massachusetts so it...
Olive, There are two different types of surgeries. The one Ginny is talking about (indirect) is easiest for the doctor to preform, is very effective, and does...
Thanks for all your help. I'll pass onto my sister and her husband. Her daughter is having more tests today and tomorrow so I might be back with more...
... the ... of ... I have read all of the messages attached to this one, and I am sorry for your neice's diagnosis, but the good news is that the treatments ...
Dear Olive, I have two children with moyamoya and they both had surgery with Dr. Scott in Boston. I would recommend calling him, as he could tell you if there...
HI I would like to see if you all agree with me or not. Maybe I am missing some info. I was under the assumption that MM kids should get MRA's every year...
Hi, my daughter, almost 11, had her surgery a little over four years ago. She had an angiogram a year post op, and has had an MRI in subsequent years. She...
I'm so glad I found you all... Hi My name is Kathy and my son Daniel (4) had surgery in Boston, with Dr. Scott, last week (5/27). Dr. Scott is awesome and...
We have done follow up mri/mras at our local Drs. hospital of choice Then we would request the hospital mail a copy of the films to Dr Scott. Mandy ... ...
Kathy, We do our follow up MRI/MRA's at Children's National in D.C. I discussed it with Dr. Scott and he felt comfortable having them done here and then sent...
Hello all, My granddaughter was at Boston Children's Hospital as Ginny's son. In fact Dr. Scott operated on her in the morning and Ginny's son that afternoon....
Tyler is doing well with his recovery, it was a little scary after the second surgery, but everything seems to be self correcting so far. His swelling is...
... Glad to hear Tyler's doing well. The swelling sure is awful to look at. We tried not to let our daughter see her self and then one of the residents...
With Tyler I told him how he looked and let him decide when to look. He's has an eye for detail and would notice his reflection in windows as we walked by...
Hello, I have a six year old daughter who was diagnosed with moya moya when she was 11months old they did the EDA surgery on her and she had a massive stroke....
Hi Lonnie, I am so sorry to hear about your little girl. I can't imagine how you got through that. My little girl (22months) just had both sides operated on...
Lonnie, I am so sorry to hear about the difficulties you and your daughter have faced. I would strongly urge you to seek another opinion on your daughter. ...
My daughter has williams and moya moya syndrome. When she was first diagnoised with moya moya we were told she would live to 9-10 years and surgery was not...
My daughter has just had both side operated on. I have read that the risk of stroke from the surgery is 4-6 weeks after the surgery. Do any of you have any...
Nancy, My daughter had surgery just over a year ago in Boston.She was diagnosed at 4 yrs old.She had strokes on both sides about 4 days after the first side...
My six year old daughter had her first surgery when she was 11 months old she had a stroke th very next day. It took her speech and her fine motor skills she...
I have never heard of williams diease but just knowing someone else out there can relate to our situation makes me feel better. I am sorry to hear she is not...
USA, Florida to be exact the first surgery Dr. Mickle the second Dr. Pinus how trained under Dr, Scott the next day of Both and yes I would love to have there...
Sandy, What do they mean "nothing more they can do" ? Is she still having trouble with strokes? How old is she now? and how much has she regained after the ...
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