Hi everyone,

Anybody knows if any neurologist will do? I can't imagine too many "specializes" in moya moya. I have an opportunity to switch doctors by Monday, the 15th. I 've been through all the neurologist in my current group. Is my best bet at a university (UCLA) since they do research there?

I live on the outskirts of LA so if anybody has any recommendation, I'd appreciate hearing from you.

Doug

Hello Doug,
I would also say that finding the right surgeon is a must. I myself have seen some rather dumpy surgeons and it would scare me to go under knowing they held the knife! I have had one surgery already with Dr. Steinberg in California and he is a sort of specialist in moyamoya. I don't know from experience about UCLA, but I do know about Steinberg and he was great. Good luck in your search for the right surgeon. We'll be praying.
                                                                      freckles

Doug,
I was lucky enough to already have a wonderful neurologist here in CO before Tyler was diagnosed with MM. Our neurologist didn't know much about MM but was willing to learn so he could help me find the right neurosurgeon. When I had a problem with the neurosurgeons here he went up to bat for me to get permission to take Tyler to CA to Dr. Steinberg. If you can't find a neurologist that knows about MM, make sure you find one willing to ask questions and that will listen to your concerns.
Rena

I dont  think that ANY neurosurgeon will do, but as far as a neurologist, I'm not going to say that any will do, but as long as you have a neurologist who is willing to work with your neurosurgeon to understand the disease and its etiology, i feel that most  GOOD neurologists can do the job.  You have to remember that the neurologist job is to control seizures as well as determine the extent of damage and what can be done to help with this damage.  I also think that if you have a good neurolsurgeon, he should definitely have a neurologist that he prefers to work with, as their jobs sot of go hand in hand.  I know Timothy saw a neurosurgeon first, and he only has one neurologist that he works with.  Luckily, they both were residents at Boston Children's with Dr. Scott.  So just remember, your neurosurgeon is probably the best person to help you decide if your neurologist is capable of doing the job, as well as if he is performing the job adequately.