Michelle~

I hope you have good rapport with your neurologist and can ask lots of questions.

The beginning section of this board gives DJs story which might also help.

I wasn't diagnosed until I had a hideous stroke. Then went to Stanford Univ hospital and met Dr. Steinberg. He diagnosed mm and I had surgery with him almost ten years ago.

It's important to get answers, as you're doing, as soon as possible. and to see an expert like Dr. Steinberg. There  is a list of surgeons on this board also.


Hope things go well for you and your son,