Diagnosis

January 8 2007

MRI image showing my AVM

waiting for news, good or bad, always sends your imagination reeling. i was just so scared that i had something permanent. that i would be one of those people with the weird ticks that everybody stares at. i couldn't be a weirdo spastic my whole life, please! what if it was incurable; one doctor had suggested multiple sclerosis; what if i would never be able to walk properly again. i tried to imagine how i would deal with a situation like that; suicide kept popping into my head. if i couldn't be me, live my life, then what was the point. i just couldn't accept that i might be sick for the rest of my life, couldn't imagine how i would deal with it. i kinda liked my life and i was terrified that it was gonna change forever.

colin had to go to work on monday, so i was alone in my hospital bed when the doctors came to give me the result of my MRI. you have an arteriovenous malformation in your brain, do you know what that is? not a clue! the doctors were really good at explaining exactly what it was, where it was, the dangers it posed and my treatment options. This was too much for me to deal with on my own. i was in such shock that i couldn't even understand everything that the doctors were saying to me, i was just trying very hard not to start sobbing right in front of them. i wanted to project the image of a strong, brave woman even if i really felt like a frightened little girl who just wanted her mommy. how could i have something like this? you never think it's gonna happen to you and most of the time it doesn't, but just once in a while you get the fright of your life.

dr tai was coming later to show me my MRI images and explain things further, and they left. colin had taken my cellphone to work as he didn't have one. desperately trying not to lose it altogether, i went and asked at the nurses station if i could use the phone. not for cellphones, sorry. I managed to find some payphones in a public area and called colin at work. having to explain it to someone else cracked me, and i sat on the floor crying at him through the public telephone. my brave, independent woman persona was destroyed and my secret identity, 'crying baby' had been revealed to all in ward 5D. i was mortified. colin left work immediately and came rushing to the hospital, my hero! After that, Colin didn't leave my side if he could help it. He was my only family.

so, here is the medical side of it. Firstly, an arteriovenous malformation is a mis-connection between the vein and the artery. your blood should flow from artery to vein to capillary and then back to your heart. but an AVM is a short cut straight from vein to artery, bypassing the all-important capillaries. what happens with AVM's is that they get bigger over time as more blood travels through the 'short cut'; about 1-2% bigger every year. new connections are often formed as the AVM gets bigger and more complicated. as time passes the AVM can hemorrhage. it bleeds out because the blood 'pools' in the vein causing an aneurysm. then there is too much pressure on the vein wall so it bursts. this is the worst case scenario and generally causes a stroke and/or brain damage. AVM's can also cause blood loss to other parts of the brain. an AVM is greedy and will therefore 'steal' blood from surrounding areas.

this is a congenital (from birth) condition. you can have an AVM anywhere in your body. mine is on the top of my brain stem, near to the right mid brain. a cerebral arteriovenous malformation. if you look at the MRI image it looks like a piece of snot. this is a dangerous place for an AVM:

a) because all the blood and information for the rest of the brain passes through this area. The brain stem is also the highway where information travels from your brain to the rest of your body. so the command; 'hold this cup' must travel from your brain to your muscles through the brain stem. this is also the area that controls your eyes, ears and balance. pretty much everything!
b) because it is right in the middle of your brain where millions of tiny and important nerve connections are, it is dangerous to just go in and start messing around.

all the neurologists at the hospital were still a bit nonplussed as to my myriad symptoms. the 'seizures' (which i should more correctly call convulsions) they found particularly confusing. this had never been seen before with a brain stem AVM, i was a fascinating and puzzling case. so, more tests were done to make sure i didn't have some other condition that was causing the convulsions. nothing. so the continuing best theories are that the AVM is 'stealing' blood from other parts of my brain, causing spasms. and that it is exerting pressure due to blood-engorged veins (yummy!) on three different parts of my brain; brain stem, right mid brain and cerebellum. videos were taken of my 'drunken chicken' walk and my convulsions and i know many a scholarly discussion about my weird condition has taken place in the halls of the national taiwan university hospital. i am famous!

i should also add that this was the day i smoked my last cigarette. i was stressed out by the bad news and demanded that colin take me outside for a cigarette to calm me down. we sat outside in the freezing cold. the cigarette tasted awful and when it was finished, nothing had changed. i didn't feel any better and my AVM was still there. that's when i realised; it's kind of a pointless habit isn't it?