Wednesday, November 15, 2017

Brain Disease and Being My Own Advocate

When I was diagnosed with the ultra rare brain disease, Moyamoya, I thought that it was a good thing to treat with baby aspirin.  But after thinking about that for a day, it actually meant, take baby aspirin and wait until I have a stroke before treating with surgery.  The more I thought about it the worse that idea sounded.  Wait until I have a potentially deadly neurological event?  Hell no!

My research for options lead me to the Stanford Moyamoya Center in California.  Dr. Gary Steinberg is an expert in his field and has performed over 1400 Moyamoya surgeries.  I sent my scans to Stanford for a second opinion.  It's a wonderful service.  The Stanford Moyamoya Center and Dr. Steinberg reviews scans and gives second opinions at no charge to the patient.  No insurance, no out of pocket.

This second opinion just confirmed my doubts I had with the Denver neurologist.  He just didn't have experience with and knowledge of Moyamoya.  My right interior carotid artery is 100% blocked.  I'm at a high risk of stroke, aneurysm, TIAs and/or seizures. Although, taking baby aspirin and waiting for any one or more of those things to happen is an option.  Surgery that can potentially keep me from ever having a traumatic neurological event is also an option.  Dr. Steinberg's approach to my case is, let's take care of the problem before there is a problem.  I'm so lucky to have this diagnosed before any serious problems.

Maybe it hasn't sunk in.  Maybe having 2 years of lung cancer under my belt has prepared me for another incurable disease.  It's just another bump in the road of life.
Clipart, not Lisa's actual brain
I started a Go Fund Me Campaign to help with all the added expenses that will go with brain surgery and recovery.  You can read more about my brain disease battle and donate by clicking  HERE.






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