Treatment of Moyamoya

I want to be VERY clear about this, if you Doctor has recommended surgery for Moyamoya, then I hope that you pursue this with all haste.

If your Doctor has commented or proven in other ways to NOT be familar with Moyamoya, I would hope that you will contact Dr. Steinberg or another specialist such as those at Washington University to get their opinion on your condition!

I am NOT against surgery for Moyamoya in any way, shape or form!!! It does have a good track record at increasing profusion (more blood flow) in the brain!!

Here is my ONLY real difference in opinion...

IF your Doctor has measured your blood profusion (variety of ways, SPECT, etc, Washington Univ is REALLY good at this) and the profusion is already GOOD despite your blockage. Then if the Doctor does not believe the risks of surgery are "worth" any increase in profusion...then following their plan of treatment is reasonable.

Surgery will NOT cure Moyamoya, it WILL increase profusion (blood flow) and for MANY folks they need this and they need this ASAP!!!!

But surgery (and treatment by blood thinners, etc) does not cure the disease, but is a treatment of the symptoms.

I have been told I am the advocate of "wait and see" and I can assure you I am not. I am an advocate of finding a Doctor, with comprehensive knowledge of the disease and following the course of treatment they recommend.

I am REALLY big advocate of self-education, I know more about this disease than I did six months ago!!

My only other difference from "the Party line" is they will always tell you the disease is "Progressive" Read my post below and you will see this is NOT true for all folks. (Read the statistics there for yourself)

I hope this helps anyone reading this site or Moyamoya.com in seeing what my differences are.