Progression rates can be different from patient to patient. I would recommend to not make hasty decisions, but not to sweep it under the carpet, either. Try to educate yourself as best as possible, then move forward with your decisions. Having a doctor with a lot of moyamoya experience is high on the list of things to ask about. Ideally, you want someone who can tell you about their patients' long term outcomes.

By any chance, are you on Facebook? There is a decent size group of people on the World Moyamoya Day - May 6th page. People are being encouraged to connect with others in their geographical area, for support and awareness purposes. If you are on Facebook, you might give it a try. Good luck!

Jill