I saw Dr Scott yesterday as a consult (I am forty so he won't take me as a patient).  He was kind and generous with his time (ESP since I won't be a patient).  He is recommending that I wait on surgery.  He called me "unique" for moyamoya in that I have no symptoms, have never had a stroke, don't even have evidence of lack of blood flow to the brain and have several strong collateral vessels providing additional flow.

He wants me to have a provision test and a SPECT test as a baseline and then yearly MRIs to watch for changes.  He is recommending Dr Rose Du at the Brigham should I need surgery in the future and I am waiting for a recommendation for a neurologist at Brigham.

Dr Steinberg at Stanford is recommending surgery. 

We are going to go with Dr Scott's recommendation for additional tests and wait a while.

Anyone else have a similar situation?

Hi there-

So, were you diagnosed with MoyaMoya? I was first diagnosed with vascultis. After getting many opinions and tests done, it finally was diagnosed with MoyaMoya after seeing Dr. Dodd at Stanford. It seems that Stanford, in the West Coast has the most knowledged in this rare prgoressive disorder. I will go back in a couple of months to see if anything has progressed.

Good luck!
nina