Posted by Nancy on August 06, 2003 at 18:16:21:
In Reply to: Danielle posted by Kevin Low on August 05, 2003 at 13:59:54:
Kevin,
My daughter Mandy who is 20 yrs. old had 4 strokes 3 major before her diagnosis of moya moya much like your Danielle nothing was wrong with her before hand. She did not get surgery for a month or more but because her brain needed to cool down. When we went out to Stanford for surgery we met a little 11 yr. old girl Amber also getting surgery by Dr. Steinberg and she only had Tia's but Dr. S. saw her films and told her to get there immediately or the end results were grim. You need to persue, persue, persue, keep calling people asking opinions until your family is comfortable with the answer. People who have put it off and waited have had additional strokes. Stanford as I've told many people were excellent we mailed the films and they called back with they're opinion in a few days, we overnighted the films though we were so worried. From what I understand Dr. Scott in Boston is also good but we were a little soured when he wanted a hefty fee to just look at the films and Steinberg did'nt to me that says something about a doctor. This is only my opinion I don't mean to offend Dr. Scott fans he's done wonderful things also. Mandy is doing excellent in the 7 months since this happened she was paralyzed on her left side and is now walking with a single end cane and is gaining a little more use of her hand everyday her speech ia tons tons better also. Her hand and arm have been much slower coming back but thats normal. You may want to look into botox injections for her arm, Mandy just got them for the first time 3 or so weeks ago, it has loosened up her arm and hand theres not so much spastisity in them her neuorologist couldn't believe after 2 rehab facilities and 7 months of rehab no one had suggested it before. Good Luck to Danielle our thoughts and prayers are with her and any questions at all please ask.