greetings Kathy S....
It is not I but my son William (aged 46) who has moyamoya and many of the same problems you have.  He just called me asking for help and I don't know where to turn.  I have posted many previous thoughts and worries regarding William that you might research on this site, but briefly he had both sides of his head operated on 4 years ago and still is photosensitive and has ringing in his ears.  His medications don't really help, and he doesn't work now.  And it's been 4 years now since the operations, and he has also had a major heart surgery a year ago.  My mission at the moment is to try to help him, in whatever way I can.  He said his doctor cut off his medication and they just don't understand moya-moya... which is likely as no one seems to understand it.
William is in Lake Worth Florida and I am near Knoxville, Tn.  I just talked with a nurse in Nashville with Dr. Miracle and got him an appointment in Feb for a consultation.
Yes, please post and let me know more about your situation.

charley