oh my good grief! in all of the tests and procedures that i've undergone since this fun began on march 23rd, NOTHING has been as unbelievably weird as this blood patch. seriously--not a spinal tap, not a research study MRI in which the tunnel started shaking, not even a freaking brain biopsy compares to how surreal and bizarre what i experienced today was.
don't get me wrong--it worked, or at least i've been vertical now for nine hours, and while i still have a weird headache below and behind my right eye, i'm not crying and i'm not ready to pass out from the intense pressure i was feeling before. what i seem to have traded my awful headache for, however, is the oddest back pain i could possibly imagine. more on that later...
i had a one o'clock appointment. i spent my morning in my pajamas trying to make sure my half-assed insurance company would cover the blood patch procedure and having a text message conversation with my sister about why she is so much better off without her manipulative, selfish boyfriend. got the former straightened out. don't have the power to even make sense of the latter. anyway, felt okay enough, after having taken a caffeine pill earlier, to take the subway to presbyterian medical center for the procedure. got there a few minutes early, good thing since presby has possibly the most inane layout of any hospital i've seen yet.
found the department i needed, checked in, and then the headache came back. i sat and slouched (to try to take off some of the pressure) and waited and by the time they called me to head back to the examining room, i felt absolutely justified in being there for this procedure. i had to fill out one of those new patient forms that included the following three questions (not verbatim, by the by):
1. circle the number below that represents your pain at its worst:
2. circle the number below that represents your pain at its least:
3. circle the number below that represents your pain right now:
and of course, the numbers were on that oh-so-ambiguous 1-10 scale. i honestly don't know how to answer those questions and i hate that scale. because isn't it all relative? i suppose that pain is a relative thing. totally subjective. the worst pain i've ever felt was in the hours after my brain biopsy, when it felt like a nuclear bomb had hit my skull and the fallout was radiating out from the impact site all over my head. so i guess that would be a 10? and obviously 1 would be pain-free. but how do i qualify the other numbers on the scale? i propose the following new scale:
a) no pain
b) annoying pain, but not anything that's going to disturb my life
c) pain that i wouldn't call out of work with, but that would keep me from meeting friends for drinks afterwards
d) pain that i'll go to work with, but that will end up sending me home in the middle of the day
e) pain that will keep me from leaving the house
f) pain that makes me cry
g) pain that makes me cry and writhe and wish that would make me pass out
there. i could answer those questions on that scale. they would be the following:
but i think what i circled was, respectively, 8, 2, and 7.
anyway, so a neurologist came in and asked me some questions, and then left me alone for a while. this gave me some time to reflect. my reflections were as follows (warning: some language is extreme. my apologies, but i wasn't exactly having a good time):
jesus god what is going on with my life? i don't know how many more doctor visits and tests i can handle. i'm sitting here in a shithole examining room with a headache because my spinal fluid is leaking?! this is all just too unreal. it's too stupid to be real. i can't even go through with this it's so stupid. but it's kind of rude to just leave. and besides, i already paid my copay. but sweet christ they're going to patch me up with my own blood! it's all very economical and all but, hey, is that a helicopter? this place gets its own helicopter? it sounds like the landing pad is directly above my head. that neurologist was an ass. i don't like it here. this is the first thing i've had to do, besides MRIs, without someone here with me. that's not a big deal. it feels like a big deal. i wonder if i can put my feet up on this table. (big noise). that wasn't a good choice. jesus. i'm scared.
and then the anesthesiologist (galapo was his name--pretty young, lots of arrogance) came in and told me to lie down, probably because i looked like an idiot all slouched in a chair. he re-explained the process, asked me if i had questions, and then we went into the procedure room.
i had to strip down to my skivs and put on one of those hospital gowns. in the room, i laid (27 years old and a grammar stickler and for the life of me i can't remember the rules about lie and lay) down on my stomach on the table with my left arm extended above my head. they cleaned off my back and my arm with soap and then betadyne. the betadyne smelled bad. it smelled like betadyne. i said, "with all due respect, this room is a little scary." i felt terrified. dr galapo said, "it's scary?" and i said, "nothing. i'm just a little nervous." but it was scary--it looked like a storage closet qua operating room. what i could see from where i was lying was the fluoroscopy monitor (so they could see both the prior needle mark and where the new needle was going) and to the right there was this crate of six green oxygen tanks. the difference between this room and the other rooms where i've had invasive procedures (the spinal tap at HUP and the biopsy at Graduate) was almost extreme. those rooms were clinical and white and oozing with sterility. this room felt dark and cluttered. i don't doubt its cleanliness, but it was lacking in medical ambience.
there were four people other than me involved in the procedure. two men--the neurologist who had talked to me first, positioned at my back to put the blood in, and dr galapo, who was training/attending/supervising/whatever they call that; and two women--one who i never really saw and one who was (my favorite because she was the nicest) posted at my arm to get the blood out.
now, this happened to me right before they put me out for the biopsy and before dr kremens started the spinal tap--i started to feel really fearful and almost out of control, like i was being experimented on and couldn't escape. it got resolved in the biopsy by putting me under. it got resolved in the spinal tap by my asking the doctor about a billion questions. but this was weird because i felt so outnumbered, i was lying on my stomach and couldn't see what was happening, and i didn't feel that the blood patch was 100% necessary--i kept thinking that maybe if i waited another day the pain would go away on its own. i had the kind of feeling that the world was getting really small and existed completely within that procedure room. i wasn't myself. i didn't feel that i had any control over what was happening to me. i really was terrified. the only thing i had any say about was whether i was going to lose it right there in a relatively simple procedure.
although the moments are fewer and farther between, i still have blips of realization that what i'm dealing with here is my central nervous system. this isn't like a broken leg or even like a bad heart. if this gets messed up, i'm not me anymore. i could lose a kidney and still be emily. i could have open heart surgery and still be emily. in matters of the brain, i have so many questions about what makes me me. i'm already not the emily that i was two months ago. i feel the need to mention things to stean that someone should know on my behalf--like how claustrophobic i get in the MRIs, but if i'm blindfolded, and can't see how close the space is, i'm okay--in case something happens and i can't say things for myself. i'm sitting here right now, feeling this awful tightness that is my own blood intentionally misplaced inside my epidural cavity, thinking about all the things that could go wrong because of some mistake--a stroke, an aneurysm, an embolism, i could die in my sleep. this is a colossal waste of my energy, but deep down, no matter how brave or strong or relieved or informed i am in my multiple sclerosis, i'm still a kid in the dark, surrounded by unfamiliar noises. this is what i will have to work hardest to live with--the inevitability of the unknown.
they got my vertebrae up on the monitor. it looked like an x-ray. i asked where the spinal tap had been done and dr galapo pointed out a grey line. he had the neurologist do the patch one vertebra up, which didn't make sense to me, and i probably should have asked about it, but i didn't. i only have one needle mark in my back, though. i don't remember having been given anything to numb the skin, but i must have been, because they put a decent sized needle into my back and i only felt pressure. i could see the needle on the monitor, and once it was in place, the woman doctor numbed my left arm at the inner elbow with lidocaine and inserted the needle. i watched. i've never been squeamish about needles or shots, but there have always been receptacles on the other end of those needles with either something going in or coming out. this needle just sat there in my arm for a bit, then she opened the valve and suddenly my blood was running down my arm and i felt like the room had just been spun like a top. i told her i'd better not look at what she was doing for now, but i could still feel my blood, all nauseating and warm, running out of the needle.
she put a vial on the end of the needle and it filled with blood. then she handed it off to the neurologist. the blood would have to be injected quickly or else the blood would start to clot and be useless. dr galapo said i would start to feel something in my legs and head as the neurologist put the blood into the needle in my back. i didn't feel anything at first, but then felt a tightness in my lower back. it hurt, so i said "ow". and dr galapo told the neurologist to stop for a bit. and then once the pain wore off, he put the rest of the vial in. but i was still okay, so in went more blood, until i felt like my upper half and my lower half were going to curl up like one of those fortune telling fish. it wasn't pain, really. it was painful, but it was more of a tightness. that makes sense, i guess--fluid was being injected into a space that didn't exactly have or make room for it. 28 cc's. 28 milliliters of my own blood now resides in my back. and it sat there and congealed and plugged up the leak, just like it was supposed to.
maybe it was having had ridiculous headaches for 5 days straight. maybe it was the procedure itself. maybe it was the smell of the betadyne. none of it made sense. they cleaned up my skin, and that was it. i had to lie down for about half an hour. then i hung out for another 15 minutes or so, just to make sure the headache was gone. after that, i got my stuff and walked out. the appointment was at 1:00. i left at 3:30.
now it's after midnight and i feel like i have a giant rock crammed into my lower back. it's not muscle sore or skin tender. my actual innards hurt. this should break itself up in the next day or two. blood patch. it's a terrible name. terribly uncreative. at least "lumbar puncture" sounds clinical and exact. blood patch?
no more of this please. i want the bruises in my arms from having blood drawn to go away. i want my vision to return. i want to be able to taste my meals. i want to feel like things are starting to norm. i'm so tired.