Posted by Lisa on February 26, 2003 at 01:30:38:
In Reply to: 9 year old daughter with moyamoya posted by Kim Veronesi on February 25, 2003 at 19:31:31:
Kim,
Sorry you had to find us but happy to hear that Hannah was diagnosed properly and hasn't suffered any strokes. She has one of the best pediatric neurosurgeons in the world so rest assured about that.
I am an adult with MM but I can also attest to the fact that the actual surgery is not that bad. I've had dental work done that was worse! One thing though that I wish someone would have told me before is that the surgeon cuts your jaw muscle during surgery and honestly that is the worst part about the whole thing. Even that is certainly not huge pain- especially for someone that suffers from headaches normally. Anyway, get Hannah some softer small food so that she doesn't have to open her jaw too wide. Just passing on a suggestion that I wish someone had warned me about.
Also, tell Hannah not to worry about her new haircut from the surgery. Not bad at all! I have longish hair and unless I put my hair up you couldn't even tell I had anything done. I can send you pictures if you want.
It does seem that most everyone ends up having both sides of the brain operated on. I have only had one side but expect to have the other side done at some point. Honestly I will be relieved when that is done instead of worrying about a stroke at any time.
Final thing I want to impart to you is something DJ (the website owner) told me before my first surgery and I was scared to death. He said "don't be afraid of the surgery, be afraid of what will happen to you if you don't have the surgery!". Wise man!
Good luck to Hannah and her family. It WILL be okay! Please keep us updated!
Lisa