Posted by Marlene on June 10, 2003 at 00:08:50:
In Reply to: My daughter Cindy posted by barbara miller on June 08, 2003 at 11:23:08:
My name is Marlene and you've come to the right place for support. I am so sorry to hear that your daughter was diagnosed with moyamoya. We here know all too well the fears of this condition, but atleast now you have the correct diagnoses and hopefully after Friday, Cindy will be another success story. I personally do not have moyamoya, but my niece Mandy does.
We all can understand your skepticism. The unfortunate part of it all is, the lack of knowledge about this rare disease in the medical profession. Mandy too, was misdiagnosed for years and by that, ended up having several major strokes. After she was properly diagnosed with moyamoya, she had STA-MCA bypass surgery on both sides, by Dr Steinberg, at Stanford, one of the best moyamoya surgeons in the country and it saved her life. Praise God, she is doing great now. No more TIA's or strokes.
I can't stress enough how important the surgery is! This disease leads to irreversible blockage of the main blood vessels to the brain and depending on the severity of the moyamoya vessels, the only treatment is surgery. I don't know the severity of your daughters case or what doctor is doing her surgery, but it's so important to have a neurosurgeon who has experience with the disease, then you can feel confident with your decision about the surgery and know that it's the best option for this disease. Talk to him, ask alot of questions and learn all you can. That helps you through it.
You and Cindy will be in all our thoughts and prayers.
Please keep us posted.
God Bless,
Marlene