#Moyamoyadisease info

http://www.medwire-news.md/39/98517/Stroke/Moyamoya_characteristics_in_the_USA_defined.html

http://emedicine.medscape.com/article/1180952-overview#a0101

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680995/

http://www.ncbi.nlm.nih.gov/pubmed/20358609

http://www.health.am/ab/more/single-gene-defect-can-lead-to-          stroke/

http://www.mendeley.com/research/seckel-syndrome-and-moyamoya/

http://www.stroke.org/site/PageServer?pagename=STROKE

http://ezinearticles.com/?Strokes-In-Young-People-Increasing&id=6630679

continued...it was quite a shock, in spring 2010, when doctor ZAIDAT showed my son and i images from my brain angiogram from dec 2008. it was my appointment to schedule my brain revascularization or bypass surgery of the brain, like they do in a heart bypass. so, for over a year i had been preparing myself emotionally for brain surgery,NOT the easiest thing to do. now,i had been trying,along with several doctors, for years,with no luck, to get medical records from 1992or93 when i had a brain bleed while working out at a gym and my diagnosis about a year after that of lyme disease. well,2 weeks prior to this appointment for surgery ~ a doctor had finally found 1 written report from 1996 comparing an MRI done in 96 to one in 1994. 
on the top of the 1st page it said the exam was NORMAL! luckily she kept reading. the report went on to say nothing had changed since the MRI in 1994 concerning the blockage found in the right internal carotid artery and the right mid cerebral artery,it went on to talk about tangled blood vessels and the suggestion of surgery of the carotid artery. i.m sitting there listening to the doctor read rapidly through the report, i had to stop her and ask her to repeat the first mention of a blockage in a carotid artery. see i knew what that was because my dad had had that....basically the same time i did,difference being ...i was NEVER TOLD about mine! 
she went on reading again, rapidly repeating about the blockage to the right mid cerebral artery,at which time i stopped her again...i'm like,WAIT-WHAT?? i said,NO ONE EVER TOLD ME ANY OF THIS!!!! she went on to say something like,oh i'm sure they did but you forgot...i STOPPED HER AGAIN!! i said NO,NO,NO,NO, all i was told at the time was i had lyme disease and the brain bleed was probly a one time vascular event. she looked at me funny and i said...my dad was going through the same thing about that same time only they had to cancel his carotid surgery at the last minute because they found an aneurysm. how could i remember the details about my dad and forget them about me? i asked, is there a follow up report? is there anything about my HAVING surgery? ...she looked at me and said NO, i saw her whole demeanor change,she was stunned,she realized she had just told me all of the answers to all the questions i had been asking since 1993. 
i had already been diagnosed with #MOYAMOYADISEASE by this time yes and had been preparing myself  for brain surgery. but we both realized in that moment that she was holding in her hand a 2 page report that may change everything! ...and 2 weeks later...it did. to be con't on september 14,2012 post
     

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.