Hi... I was wondering how old your daughter is.   If she's over 5, did they give you a reason for doing indirect surgeries, as opposed to direct bypass revascularization?   I think for older children and adults, the direct is better if it can be done.

Also, an MRI and CT won't tell you everything about blood supply.   A SPECT study could tell you if the brain was getting enough supply, and an MR Angiogram would be better at looking at the blood vessells.

I am so sorry your daughter has been having such difficulty.  To have to go through surgeries twice, and still have problems is just so unfortunate.   My daughter had EDAS surgeries this March (she was 17 mo. old) and I am so nervous about it -- I so much want to see improvements in her.   She had two strokes before they discovered moyamoya, and already had a seizure disorder and severe developmental delay.

I wish I knew of someone in England to recommend.  There were a couple of doctors I saw recommended on the "moyamoya surgeons with bypass experience" portion of the board.   One was Dr. Paul May in Liverpool, and the other was Dr. Thompson in London (Dr. Thomson, the post said, had done 34 surgeries).

It sounds like your daughter does not have adequate revascularization to be having so many problems.   My gut feeling is that the headaches and problems walking are very much related to moyamoya.

I really hope you find someone with more experience.  You might even consider getting in touch with Dr. Steinberg in Stanford, CA, to get his opinion on your daughter's case.

Jenny

Michelle,

Unfortunately, I have no idea about Great Ormand Street hospital, (I live in the U.S.)   Dr. Steinberg did my daughter's surgeries, and I feel so lucky that she is in such experienced hands.   I read posts like yours, and just feel so bad for people who don't feel like they have access to a very experienced moyamoya doctor.
I wish there were more of an interest in this disease in the medical field!   


I hope you find some answers for your daughter soon.

Hi
Have just been on the message board and noticed these emails.  I'm Joes mom and i'd just like to say Joe got his surgeries done last May in Great Ormand Street and his surgeon was Dr Thompson and consultant Dr Ganesan.  We thought they were both very good and very approachable and most importantly knew what they were dealing with.
Joe has been suffering migraines since the surgeries but we have to go back to London (we live in Belfast) on May 19th for a Mri scan so that will tell us how things are going.  If there is anything else you would like to know don't hesitate to get in touch

Michele