I had to Google the disease when I first heard of it a few months ago. Here's a brief summary:
Moyamoya disease is a progressive disorder that affects the blood supply to the brain. It is rare, but is being detected more frequently with recent advances in diagnostic imaging.
It can occur at any time, but is most commonly diagnosed in childhood between ages 5 - 15 and during adulthood between ages 30 - 40. Courtesy of Stanford Moyamoya Center
The condition leads to irreversible blockage of the main blood vessels to the brain as they enter into the skull. It is a disease that tends to affect children and adults in the third to fourth decades of life. In children it tends to cause strokes or seizures. In adults it tends to cause bleeding or strokes.The process of blockage (vascular occlusion) once it begins tends to continue despite any known medical management unless treated with surgery. The repeated strokes can lead to severe functional impairment or even death so that it is important to recognize these lesions and treat them early on. Without treatment, there is progressive deterioration of neurologic function and re-hemorrhage. Courtesy of Moyamoya.com
Due to the rarity of the disease, John researched the disease on the internet and found Dr. Gary Steinberg at Stanford University Medical Center. Dr. Steinberg is the leading specialist on the disease and treatments. Luckily, my neurologist was able to refer me to him for my treatment.
After getting diagnosed that morning, I got a call from Dr. Steinberg's RN, Teresa, that afternoon. She explained the disease, the treatments, and requested my test results be FedEx'd to them, so they could review my case study on Monday. Teresa said she would contact me on Tuesday to let me know if I was a candidate for the surgery. So it was off to the FedEx location at 3:30 to overnight all my test results.
The waiting began...
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