I'm wondering about something.  Jessica had her surgery more than 10 years ago, and mostly she's done well, although she's still pretty disabled from her original stroke in 1995.  My question for you all now is this:  What do you do about routine neurological follow-up?  We have a neurologist at a major university in Southern California.  But her focus seems to be seizures, not the underlying Moya Moya.  When Jessica has unusual occurrences, maybe every couple of years, there doesn't seem to be a concrete or confident answer.  For instance, she sometimes has severe pain in different parts of her body, that are unexplained by all testing that has been done.  The last time it happened, she ended up being put on heavy narcotic drugs to control it, and eventually after a couple of months it went away on its own.   None of her doctors have been able to explain it, and as long as her seizures are under control, the neurologist isn't particularly interested in figuring it out either.  As a matter of fact, the last time when I was describing the severe pain to the nurse, she actually said, "Well, it doesn't seem like anything emergent is going on."  I realized she was talking about seizure activity, while I was talking about severe pain!  It was then I realized their focus is really only on seizures, not the underlying MoyaMoya condition.  I'd be interested to know what kind of neurologic follow-up you all have found, and how confident you are in the neurologist's ability to manage MoyaMoya, once the diagnosis and surgery part is finished.  

My daughter, Daphne, had surgery in California, so I can identify with what you're going through.   The neurologists who are closer to home (Pennsylvania) have limited knowledge and experience with Moyamoya.  Ironically, the doctor we've had the most success with post-surgery, is the same neurologist who - after Daphne's strokes - told us she would probably die within a couple of weeks.   The neurologist she saw from 3 months old up to her strokes was only interested in her seizures, and whenever we mentioned pain continued to tell us it was due to reflux.   Fortunately, the other neurologist took us more seriously and prescribed Neurontin.  Ever since Daphne has been on it, she has not had any migrain-type behavior (inconsolable crying, facial flushing, photosensitivity etc.)

I can only say that if Jessica's regular neurologist is not treating Jessica's full neurological symptoms (not just seizures) that you might want to look for a different neurologist.  Even if the doctor doesn't have a lot of experience with Moyamoya, (s)he should be receptive to what you are saying and be willing to look into a treatment that could help.

Jenny

Hi Jessismom,
I would advise you to find another neurologist to monitor your daughters condition. I had my surgeries coming up to 5 years ago now and for the first 3 years or so I was getting an MRI/MRA every 6 months and an angio every year. I haven't had any symptoms since so my neurosurgeon has told me that I don't need to see him UNLESS i experience symptoms - same goes for my neurologist. If I have problems in any other area (like I had ear problems a couple of years ago) that ENT consulted with both my neurologist and neurosurgeon.
I have my neurosurgeons cell phone no so he is available to me 24/7 and has told me to phone him about the slightest thing! So as a consequence I feel like I am totally looked after with this condition and trust and believe in both of them.
This is the piece of mind that you should be getting with your daughter's team - find a caring professional with MM experience who will monitor her competantly over time!
Moira

Thanks for your input, Jenny and Moira.  I appreciate it.  Jessica has her neuro appointment on 5/17, but just with the nurse practitioner.  I think I'll request referral to someone else at the university medical center, and if they can't provide someone more attuned to her current needs, I'll start over.  It's just difficult to start looking all over again.  I guess, though, I've just been kind of lazy about it, because not that much was going on.  It's only when unusual things happen that I always wonder how much the MM has to do with it, or whether it's something completely new and different.  As she's getting older now (will be 30 this year) I know that's always a possibility.   It's kind of unsettling when the docs don't seem to know, either; and even more so when they don't seem too interested in finding out.   I appreciate your suggestions.  Thanks again.
Jennette