ok. here’s the situation.
i have been feeling not great for the last 6 weeks or so. flare-up of my neurological symptoms – coordination’s off, crazy-dizzy, wonky arm is worse, much more easily and quickly fatigued. my neurologist here in corvallis sent me for blood work, x-rays, and a CT scan. they all looked fine.
next i saw my neurosurgeon in portland. i had an MRI and more x-rays (and let me say here that there are some good folks working in the imaging department at providence st. vincent medical center). he showed me the scans and said that if anything, things look a little better in there than my last MRI in february. i have a collapsed right ventricle and a shunt that drains it through a tube to my stomach. i don’t know how it works and i don’t really want to. installing it was the 4th brain surgery i had back in 2009, and it’s weird enough that i have this thing implanted in my head. i don’t need to know how it works.
then he manually checked my shunt. it’s all inside my skin and is adjusted with a magnet, but what feels to me like a bump under my skin behind my right ear is actually a way that you can check to see how it’s working. he messed around with it for a bit and said that it isn’t draining properly. so my brain seems to be doing more of its own thing. but is it doing enough? dr. gore (that’s my neurosurgeon) said that he wanted me to go for a lumbar puncture. i said, “they should really come up with a better name for that.” dr. gore said, “they did. spinal tap.”
i studied for my spinal tap – i’d never had one before – by watching “this is spinal tap” with the audio commentary on. then my mom and i headed up to portland for my appointment. i had to be admitted to the hospital (providence portland medical center). it was quick and orderly – the staff folks i interacted with were kind and professional. i was totally impressed. i changed into a hospital gown and filled out some paperwork. a nurse put in my IV and i met the doc who’d be tapping me. they wheeled me into the room, helped me get up on the table, and i drifted off while they were talking about thanksgiving recipes and wrestling. next thing i knew i was laying on my other side and talking to my mom about who knows what. she took a picture of me.
i was so confused. i realize now that part of the confusion was because of the last time i remember going under. it was for my first brain surgery back in 2009. i remember being in pre-op with my mom and my cousin, then there are all of these flashes and about a month later i started putting things together. so when i asked my mom what time it was and her answer was only about an hour after the tap was supposed to start, it was kind if a new sensation. i got up, got dressed, and we headed home.
dr. gore called me the next day. the tap showed that my brain pressure is elevated. he wants me to see my opthamologist this month to have an eye pressure test. then i go back up to portland in early january to talk things over with dr. gore. at this point i feel like there are a couple of options. he needs to operate to replace my shunt (and i just finally grew my hair long enough to pull back!). he wants to wait a few months and see what happens. or i keep on going with a shunt that’s not working and a brain that’s trying to pick up the slack. if that’s what happens, then i’ve taken a big step backwards and i have to get cracking on recovery stuff – the good thing about that is that i’ve done it before and i know the way.
meanwhile i can make some plans for december – i was keeping it open in case i needed to have brain surgery. i’ll know more next month, and nothing i do now will change what will happen. so i’m not stressed. not investing any energy worrying about it – if i have to get part of my head shaved i’ll just bring back the cyndi lauper “she’s so unusual” look. until then, i’ll keep on living my life, even if it needs to be within a shorter radius from my apartment.