Sunday, May 16, 2004

(this is) spinal tapped...

so, that whole waiting-until-august-to-get-an-appointment-with-my-neurologist thing worked out. i got in to see dr. pruitt on tuesday, spent about two hours with her talking about the disease and what we would do about it and what it would mean. she wanted me to have a spinal tap (official name: lumbar puncture, which honestly doesn't sound much better), because, as she said, that's what the textbooks say to do. i asked her if the results of the spinal tap would change her thoughts about putting me on "disease modifying drugs", and she said no. but she wanted the test done so that we had all of our bases covered. then i'd start on a once-a-week intramuscular injection called avonex.

i asked her why this was first being diagnosed as a tumor and she said that MS lesions typically aren't biopsied, but when they are, the cells look weird because of the inflammation. since most pathologists aren't coming into contact with biopsied MS lesions with any sort of regularity, things get read as low-grade tumors (i.e., what happened with me, and this is certainly in line with the excruciatingly long amount of time i had to wait for the pathology report). i also told her that in all i've read, seizures aren't listed as onset symptoms of MS and asked her what that meant. she said that, although it's a rarity, she's definitely seen patients who have found out they had MS through seizures. stean said to me, when we left dr. pruitt's office, "leave it to you to have something rare." leave it to me.

the spinal tap was done yesterday (friday), and the procedure itself was a piece of cake. it was done by dr. kremens, who i believe may be the nicest doctor ever in the world. the looked like my cousin ben, only maybe 25 or so years older. and, as luck would have it, he was an attorney for seven years before he decided to go into medicine. so i talked to him about law school the entire time he was doing the tap.

here's how the spinal tap was done... first i was positioned so that i was seated but leaning all the way forward, curving my back as to maximize the space between the vertebrae. dr. k found the space in my back that would be best to do the tap, about in line with the top of my hip bone (note: the spinal cord only goes about 2/3rds of the way down the spine, so there's no danger of hitting any major nerves with a spinal tap), and marked it with a pen. then i got two shots of lidocaine, one shallow, and one (which stung like hell) fairly deep. once the numbness set in, he inserted a thin hollow needle (i think he said it was a 22 gauge needle, which is smaller in diameter than the post of an earring) into my back that had attached to it a tube and i'm assuming (of course i couldn't see any of this) some sort of valve system that would allow him to drain the cerebrospinal fluid. i asked if i could see my spinal fluid when he was finished and he said i certainly could.

(at this point in the tap, i started thinking about how unbelievably messed up it was to have a freaking tap installed into my back. this feeling was not unlike the experience i had in the hospital when i was connected to the IV and the electrodes.)

he took four vials of spinal fluid from my back. four vials of clear and colorless fluid. i don't know what i was expecting my spinal fluid to look like, but i didn't think it would look like water. i guess i thought it would be more body-colored--yellow or pink or red or something full of stuff. dr. k said that if it had been cloudy or colored, that would have been some sign of bleeding or infection. i asked if he could tell anything about presence of MS from eyeballing it. he said, as i suspected, that needed a microscope.

and that was it--he cleaned off the betadyne, put a band-aid over the puncture site, had me lie flat for a little while, and that was that. i felt fine when it was finished. no headache, other than the rush to my head when i was able to stretch out from the curved-up, head-down position i was in for the tap.

adrienne was my ride to and from the hospital. she was in town for the week, and she brought me an autographed picture of will ferrell which, as soon as i can find a suitable frame, will be featured prominently above my mantle. spent the day with her, watched movies, she beat me in scrabble (further proof that i'm being as honest as possible here--i don't take scrabble lightly).

the headache started to set in around late afternoon. and it stayed with me all weekend. this was the weirdest headache--like an extreme version of a sinus headache; my brain felt like it was a balloon in a vaccuum-sealed container in somebody's science-experiment demonstration of how pressure works. when i would lie down, it would subside, but sitting up or standing was pretty much out of the question. it had me in tears a few times, partially from the pain, and partially from the inconvenience of having to spend my entire weekend lying down. this headache didn't respond a bit to any sort of pain medicine, certainly not to the two aleve, the four aspirin, and prescription strength ibuprofen i tried to treat myself with.

i thought it was gone by saturday night, but it must have been the influx of caffeine during the day, because sunday morning it was back.

oh, and did i mention that i've lost my sense of taste, too? i'm almost positive this is because of the carbamazepine, but it's exceptionally annoying and has made eating miserable. food has become tactile and bland, and kinda nauseating.



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