Thurs I will be seeing a stroke neurologist for the 1st time since I found out I have Moya Moya. The neurovascularsurgeon that performed my bypass did not tell me and I found out quite by accident. So I looked it up on the computer and found out all my information on the computer, including the prognosis.
Needless to say I am pretty nervous, does anyone have anything good to say? Well, actually scared is proably a better word. Any chance it isn't still fatal ?  Well , I guess, as I said I still don't don't know much about this disease, except what I have read on the internet. Ant that is pretty scary, and I have started having TIA'S again I'm afraid of what that may mean.

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

Why did you consent to a surgery if you didn't know the diagnosis?
If you had the surgery, your chances of a full life are much better. Also, by what I have heard on here, many people continue having TIA's. You need to talk to your neurologist about the causes and see what meds might help you.
My son (12-years-old) only has TIA's if he hyperventilates, so although he is on meds for it, we still watch him and let him know what he can't do. Don't get me wrong, he isn't limited in activity, just no blowing bubbles or blowing out candles, things he rarely did before. He still runs and plays with the other kids and has fun.

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