Dreamcatcher----I love that name------and a dreamcatcher is such a beautiful Navajo piece of artwork that basically leaves the good dreams in its lovely web and the bad dreams burn up and go away forever......I need more information.......I don't really understand your post.....I can sense that you are incredibly upset....WE are all here to provide love and support....Can you give us some more detailed information?  Good night and God Bless...PatM

Hi Dreamcatcher,

I can see where you are alarmed, but please let me tell you what I've read also. Yes, moyamoya is a progressive disease and yes, I've read that it is fatal, but, only if left untreated. Not if you've had the surgery. With the surgery performed, they have had excellent results!!. Dj has some great info about it on his links. I read one clinical study, where out of 113 patients over a 3 - 24 year study, although intracranial bleeding is one of the common manifestations in moyamoya disease, hemorrhage was not detected in the 113 patients who underwent cerebral revascularization. That is why surgery is so important with moyamoya, it's our only hope to this point and with wonderful results to date. Please don't worry! It's important to keep your follow up visits and tests, but as long as you do that, I feel that you have nothing to worry about as far as it being fatal, if you've had the surgery. I don't know if you've had surgery on both sides, but keeping in contact with your doctor and making informed decisions is so important.

Another thing I can't emphasize enough, is to read and learn all you can about this disease. The more you do, the more comforted you'll feel with the knowledge of it and your decisions pertaining to it. We have sooooo many successful stories here, feel free to ask anyone and we'll be happy to talk to you.

Mar