So, I haven't posted in a while.  I was dx in April 2011 by accident.  No symptoms whatsoever, but went to ER w vertigo and in trying to rule out vasculitis they found moyamoya, left side only.

After consult with dr. Scott at Children's Boston, I was referred to a neurosurgeon at Brigham and Women's.  she had me get CT scans w contrast twice in the first year and saw no changes.  Still no symptoms.  Good blood flow before and after the occlusion.

Third scan we switched to an MRI to reduce radiation exposure.  dr thought that she might be seeing some progression of the disease, but I was still asymptomatic, so we waited 6 more months and went back to the CT with contrast this May (2 weeks ago).  Comparison of most recent scan to first scan and last CT before MRI showed no changes.  So the difference the dr saw was just the difference in clarity between MRI and CT in viewing arteries and blood vessels.

So, since I have no symptoms, and have had no change for two years, we are moving to a scan every year, and going back to MRI now that we have a baseline.

Living with the uncertainty of it all is still stressful, but I'm hopeful that things will continue as is...

Jane - I can understand why you are opting for surgery for your son.  Hopefully it will allow him to get back to his old self and you can get back to enjoying the teenage years

Yes, I feel fortunate to have been evaluated by dr Scott (BIG perk to living in Boston) and love the surgeon he referred me to.  I have already dealt with a five year battle with ulcerative colitis that resulted in four major intestinal surgeries and in the end a permanent ileostomy (which I love!) so the longer I can avoid surgery the better.  Plus I have a 7 and 5 year old and I'd like them to be as old as possible before I need to have surgery.  Hoping the surgeon is right and the stability is a good predictor of the future!

Good luck to your son and your family with the surgery.