Posted by DJ on March 20, 2003 at 22:25:09:
In Reply to: JV-follow-up study posted by Lisa on March 20, 2003 at 16:53:44:
Yes, I agree with Lisa on this one. I'm not concerned with what happens 20 years down the road. If/when I have problems down the road, I'll deal with them then. I honestly believe if I had not had my surgeries, I would have suffered a MAJOR stroke by now!
JV, you mentioned something in one of your posts about "collateral bloowflow" around your internal carotid. Were you talking about bloodflow coming from other areas of the brain? Or were you talking about the network of tiny vessels directly around the internal vessel that show up as the "puff of smoke"?
I'm not trying to make a play on words, but I see the two as completely different things.
I look at "collateral bloodflow" as bloodflow from another area of the brain trying to make up for a deficient area = good thing.
Network of small, fragile vessels ("puff of smoke"), is what shows up on the angiogram. MOYAMOYA vessels.
If you have the "puff of smoke" on your angiogram films, I don't understand why your doctors are doubting their original diagnoses. It's fairly easy to see.
I'll put up a picture from my angiogram when I was first diagnosed. If your pictures look anything like my pictures, I'd suggest you start pressing some buttons with your doctors!
Yes Lisa, as far as I know, Dr. Steinberg doesn't charge a fee to look at someone's films. JV, Dr. Steinberg is VERY approchable and VERY good about answering his own email. I'm sure he would answer any of your questions!
DJ