He is a brilliant surgeon and he saved my life. However, he did not explain to me that I had Moya moya, simply that my left internal carotid was 100% occuludid (sp?) and I required the bypass surgery. It was sucessful then he sent me on my way and Iwas never told I would require follow up care. I am now having TIA'S again,and receiving follow up care at UCLA.


DJ edited the "Subject" line to match the same format as the rest of the posts in this section...

Thanks for your post dreamcatcher.  You bring up a great point...

There is a definitive difference between a brilliant neurosurgeon and a moyamoya specialist!

I honestly believe MOST neurosurgeons can do the STA-MCA or EDAS procedures with no problem... but there are only a few who specialize, and have experience in treating moyamoya (the disease).  There is a BIG difference!

I actually have been treated by a physician who is a MoyaMoya specialist who is not a neurosurgeon.  His name is Dr. Scott Kasner.  I believe he was trained under the physician out of Houston, TX.  

Dr. Kasner is located in the department of neurology at the Hospital of the University of Pennsylvania in Philadelphia.  The point you raised about great neurosurgeons not necessarily being excellent  specialists is well putt.  I saw Dr. Kasner in 2001 from a referral from my regular neurologist who knew nothing about moyamoya.  Dr. Kasner told me of the surgery but mentioned that it was only used in extreme cases that he knew and mine did not qualify.

Of course, I believed him, he's he expert.  So, now, in 2005 I am back seeing him again but this time I will be doing so along with getting a consult from a neurosurgeon.  

I'm so glad to have found this website when I did.  Just in the days I've logged on I've learned so much!

Charlotte.

Hi Charlotte,

Welcome to our MM family. We live so close. I live right over the bridge, outside Philly. My niece also went to the University Of Penn, and it was also our experience that they knew very little about the disease there. They told her she shouldn’t have surgery. She had 4 devastating strokes and had to be medically airlifted to Stanford, to a MM specialist, Dr Steinberg. He did surgeries on both sides and it saved her life. If you only had surgery on one side, or not at all, I agree with Shari, and urge you to get a second opinion, ASAP. You may very well be having warning signs and should address this quickly.

With all due respect, it doesn’t sound to me as though he was a mm specialist. We define a MM specialist as a neurosurgeon who performs all the surgeries needed to treat and manage this disease, and also one who has done research and published studies, and deals with MMD on a daily basis. This is why we urge people to seek a specialist, because they not only can do the surgery, but understand the disease from experience. It saves lives.

I’d be happy to talk with you or meet with you if you’d need friend or support. You’ll be in my thoughts and prayers.

Mar