My 16-year-old son was diagnosed with moyamoya on Monday.  He has an appointment with a very good pediatric neurosurgeon next week Thursday.  The problem is that it doesn't matter so much to me if he is a very good neurosurgeon.  It doesn't seem that he has treated moyamoya before.  We are looking at traveling to Johns Hopkins for the surgery.  We have some family there and the research I have done looks like it would be a good place to go.

My question is:  How does that work?  I plan to call Johns Hopkins on Monday but I have no clue how I get "out" of bringing him to the neurosurgeon he has been assigned to.  And what about insurance?  Is it difficult to get insurance to pay for a surgery out of state if they believe there is somebody who can take care of it locally?

I have so many things flying through my head....