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.

Two's Company. Three's a Crowd.

Just when my lung cancer and I were getting along and learning to coexist in the same body, there's something new in the mix.

I've been laying low and quiet lately because I was waiting on the confirmation of a possible new medical condition.

Last month I requested an early brain MRI, before my routine, annual, MRI date of October. I had some vision changes and other symptoms that sounded like possible lung cancer metastasis to the brain. I got the all clear. No cancer in my brain.

But what I did get was the news that they thought I could have a rare brain blood vessel disease called Moyamoya (moy-uh-moy-uh). In addition to the brain MRI, I needed an additional brain scan called an angiogram ct scan.

I got the results today. It's confirmed. I have Moyamoya.

Moyamoya disease is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia. The name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage.

I am asymptomatic. I have no symptoms or signs of stroke or mini strokes. So, surgery is not my line of treatment at the moment. I will probably have to take a baby aspirin once a day because I am at risk of stroke.

My case will be presented at an upcoming neurovascular conference. It sounds like the neurology version of the lung cancer tumor board.

Not only am I a mutant because of my gene mutation driven lung cancer, I'm truly one in a million. Moyamoya is that rare. I will be doing some research regarding gene mutations and Moyamoya. If there a connection between my lung cancer and Moyamoya, I'll find it.

We don't know how long I've been living with this. It's even possible I was born with this disease. It hasn't caused any issues in the past. I'm hoping it doesn't cause any issues in the future.