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Sunday, October 30, 2011

welcome to my first blog

welcome to my first blog. i am here trying to articulate the reality of how i view #MOYAMOYADISEASE,with my own personal spin on living with it. instead of tweeting impersonal links and medical jargon all the time.
blocked blood vessels in my brain grow new blood vessels to supply blood and oxygen to my brain. however,because of #moyamoya,the new blood vessels grow like a root bound house plant grows new ROOTS,tangled and basically useless.  ...some as small as a hair growing into my brain.   ...what happens when these brain cells are deprived of blood and oxygen? they die. 
#moyamoya disease is progressive...which means it keeps happening... over and over and over and over...throughout one or both sides of the brain... ;like dandelions taking over parts of the brain instead of the yard; until you have a rupture with bleeding into the brain,possibly causing immediate death, or so many blockages you simply have no more blood or oxygen supply to your brain...causing brain death.
there are forms of surgery for #moyamoya that work best in children and work well for some adults. more than one surgery may be necessary. i however am not a candidate for surgery as i was misdiagnosed from at least 1994 till 2008.
i have been fortunate though, in that during the time i have had #moyamoya healthy blood vessels were able to grow from my left brain to my right. these left brain vessels are the best supply of blood and oxygen i have to my right brain,there is however a very large portion of my right brain WITHOUT supply.

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