Hi there,
I had a question:
with MM we know there is a narrowing of the blood vessels that go into the brain. Is there any literature or real cases out there where this blood vessel narrowing is seen in other parts of the body (thereby the growth of the muscles do not happen e.g. hands/ feet, butt  are all small..).  I wonder why the narrowing affects only the blood vessels in the brain.. 

Hi it happened to your neck? is that still considered moyamoya. I was wondering because it seems that I may have that problem.

Shelbi was diagnosed with MM almost 11 years ago, she had surgery on the rt. side. 5years later they gave us the news that it was affecting the blood vessels on the left side and also the back of her brain. The dr had the chaplain in there when he told us this news, he said he couldn't do anything with the ones in the back. I emailed Dr. Scott, in Boston, he was out of the country at the time but said that I could contact him the following week when he was back in the states ( I was super impressed with this, Shelbi was not even his patient), and we could discuss some options. However in the mean time, by what can only be described as God's grace, Shelbi had her angiogram and the radiologist came out and said that her blood flow was just fine up the back and on the left side of her brain.  I pray that she never has problems again, but I know that God does give us obstacles sometimes to make us stronger. So if the situation would ever arise with the blood vessels in the back of her brain again, I will definately contact Dr. Scott first thing.
Good luck with all you are going through.

Tina Peters
Shelbi(now 15) MM, Chiari Malformation, Syrinx, Basilar Invagination