Wednesday, June 15, 2016

Moya Moya Disease

Moya Moya Brain Scan

Normal Brain Scan

In my biography I stated that I am "Moya Moya" survivor.  What is that? Basically my two carotid arteries, the main blood source to the brain, are closed up. At 39 I had two strokes plus more. Moya Moya is the reason I had my first stroke. My second one happened after my first by-pass surgery.  It affects children more than adults, but I have it.  The brain scans above show a Moya Moya versus a normal brain. I don't have mine - bummer! I know that I had them but they are lost.  I would love to show you mine. There are very few books written about Moya Moya. Using Amazon as my source, the books out there are textbooks; studies for the medical community; written in Japanese; and one for parents whose children have it.  There are no books written by an adult who has it.

Here is a definition of Moya Moya Disease from Boston's Children Hospital:

  • Moyamoya disease, which is also known as Moyamoya syndrome, is a rare but very serious condition in which the walls of the internal carotid arteries—the vessels that supply blood to important areas of the brain—become thickened and narrowed. This causes the flow of oxygen-rich blood to the child's brain to gradually slow down, and makes it more likely that a blood clot will form.
  • This reduced blood and formation of blood clots are major risk factors for either a transient ischemic attack (TIA) also called a “mini-stroke,”or a full-fledged stroke.
  • ·         “Moyamoya” means “puff of smoke” in Japanese. The disease gets its name from the wispy, tangled appearance of the new blood vessels that emerge in the brain (as the body attempts to compensate for the inadequate blood supply).
  • ·         Moyamoya disease is a progressive condition, meaning that symptoms worsen over time and the child's chances of suffering a stroke increases.
  • ·         The only proven treatment for is surgery to create a healthy, adequate new supply of blood for the impacted

It occurs in the children more than adults. That is why the above is for children.  It sucks for all of us who have it.

It is very rare disease - 1 in 12 million have it. Some reports say 1 in 119,00. It is still very rare!  I would rather won the lottery over having it. When I was diagnosed in 2004 my previous neurologist and my other doctors had to look it up. The only reason that my doctor who performed the cerebral angiogram at Eisenhower in Rancho Mirage, CA knew what he was seeing is, because he studied under Dr. Neil Martin from UCLA. Dr. Neil Martin was my doctor who performs my two bypasses and my savior. 

To put is mildly that was a life changer for me and my family.  This is one of the reasons I blogging more. I am hoping to write a book about Moya Moya and how it affects us. This is my story (and my book)!

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