First off, moyamoya is Japanese for "puff of smoke". The name refers to the cloud of fragile blood vessels that form to compensate for the restricted blood flow to the brain. According to a publication from Dr. Steinberg, moyamoya is a progressive disease of the distal internal carotid arteries and their major branches. The disease is characterized by progressive intracranial vascular stenoses (abnormal narrowing), resulting in successive ischemic (restriction of blood supply) events. Children are usually afflicted with strokes or seizures. Adults are more commonly affected by intracranial hemorrhage. The condition leads to irreversible blockage of the carotid arteries to the brain as they enter into the skull. It can occur at any time, but is most commonly diagnosed in childhood between ages 5 - 15 and during adulthood between ages 30 - 40. (Now I now why I dreaded turning 30.) According to a Stanford publication:
Deprived of blood flow, the brain becomes starved, and multiple strokes, cognitive damage, and eventually, death from brain hemorrhage can follow.Ugh! Statements like that one is the reason why I should limit the amount of research I do before my surgery. But most of the information I have found regarding treatment of the disease points to Dr. Steinberg.
Dr. Steinberg has been treating moyamoya patients since 1991. He has treated hundreds of patients and has performed over 600 surgical treatments. Due to the rarity of this disease, most neurosurgeons lack the experience in performing the surgical treatments which increase the risk of the surgery. Thank goodness we found Dr. Steinberg, especially since the surgery involves opening my head and exposing my brain.
Need to get some dinner. I'll discuss my surgery in my next entry.
Edit: I failed to mention that Stanford has a Moyamoya Center. The staff there has been very helpful to us thus far, in providing information and helping us with lodging.
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