The needle and the spine
There are always people worse off than me. Much worse off.
This is the comforting thought that ran through my clouded head since a few days past New Years and up until now. We are currently half-way through the first month of 2011 and I am finally without the inclination to comfort myself with the reminder of relativity. I can finally sit upright without intense pain and jot down a few thoughts. So here it goes.
After the holiday festivities had come to their unceremonious grinding hault in the form of a January 1st day of tea, sweets, leftover snacks and bad movies, I readied myself for another year pregnant with promise, teeming with possibility and poised for new adventure. The unexpected arrived earlier than expected, and not in the form I had hoped for. On January 3rd I was struck with an intensely painful and localized headache near the back of the brain. Forced to lay down, I took some Ibuprofen and an hour later it was mostly gone. I had been enduring a strangely lengthy low-grade headache for most of the day and the attack was like a brutal punctuation of pain on top of the regular headache. The next day in the shower the same attack occurred at the back of the brain, and considering what was then a three-day long low-grade headache with two severe attacks, I succumbed to Svetla’s insistence and called Montreal General Hospital. I explained to the nurse in Emergency what was going on and she advised me to get my ass there pronto, which we did.
That was the beginning of a hellish week of excruciating pain and unnecessary suffering. For three days I stayed at Emergency having various tests done, including CT scans of my brain, blood work, and the evil, evil lumbar puncture (also known as spinal tap). The CT scan had shown some irregular brain shape near my brain stem, where it appeared the old ideas muscle could be “crowded” – that is, without enough space between brain tissue and bone, and therefore the possible source of the mystery migraines. The CT scan didn’t fully rule out haemorrhaging however, and the emergency doctor informed me of the need for a lumbar puncture. This was on Wednesday, at the end of the first day becoming intimately acquainted with the chaotic workings of the emergency ward at MGH. The lumbar procedure is quite awful – anaesthetic needles are inserted through the skin into spinal cartilage to freeze the area, followed by a giant needle that is inserted into the cartilage in search of cerebral spinal fluid, or CSF. CSF is a pretty good indicator of physical problems with the brain, like bleeding. The brain actually sits in CSF, which keeps it moist and acts as an immunization barrier as well.
The procedure is only a bit painful and is really mostly uncomfortable. The discomfort of a tube sliding through your spinal cartilage is, however, easily mistakable for pain as the feeling is so disconcerting and foreign it really may as well be a kind of bottom-rung torture. Of course I am an extra-special human, and can now proudly situate myself in the elite 5% or so of people who do not relinquish their CSF upon not one, or even two lumbar puncture attempts. At the end of the second try the hospital bed, my body and my gown were soaked with sweat and the answer to my feebly mumbled question, “Did you find any fluid doctor?” was “I hate to tell you, but no. We’re going to have to schedule you for an x-ray guided lumbar puncture procedure.” Great. Sure, no problem! Poke my spine like its a pin cushion!
Some more blood tests conducted and IV drugs delivered and we were on our way home, unaware of crucial information that first doctor should have shared with us: some people may experience side effects from lumbar punctures, including severe headaches (known as the “post-lumbar puncture headache”). That night before bed, the beginnings of this condition reared its malicious head in my head, and I suffered through a restless, sleepless night.
The next day, Thursday, we were back at Emergency with all new doctors going through the same procedures (registering, testing for vitals, IV, questions), only this time I was going through insane headache pain. Sitting there under the unforgiving fluorescent lights, slumped in a chair like a recoiling, pathetic figure, I entered the zone of darkness – the most intense pain I’ve experienced thus far in my life. Holding my head up hurt, the lights hurt, sitting up hurt, the stupid freaking shopping channel blaring from a inexplicably coordinated television set hurt. Everything hurt and Svetla did her damn best to help, but it was baaaaaaaad. At 4PM we asked what was happening, why we weren’t heading to radiology. The doctor that day had begun an examination but cut it short with the explanation: “I’ll stop here, I don’t want to waste time – we need you to get to radiology before they close for the day.” And at 4PM when we expressed concern to the nurse about radiology closing, she cheerfully replied: “Oh don’t worry folks! Radiology NEVER closes!” chuckling to herself as she walked away.
By 7PM my pain meter was hitting nine and boy did I want to get out of that hospital and home to a nice dark, warm room. Maybe even eat something whose origins were readily apparent and that didn’t resemble a heated up baseball mitt (ah, hospital food continues its march of notoriety). Svetla was tired too and went to ask what was going on. That’s when I heard her scream and thought, shit, that’s not good. Her reaction was proportionate to the news though: radiology had shut down for the day. It turns out we waited all day, with me in intense pain, while emergency sent the wrong person up to radiology for the lumbar puncture. Once the mistake was realized, they stopped the procedure (poor sap, whoever it was) closed down radiology and completely forgot about the patient who actually needed the procedure done. Like an insignificant piece of waste paper, I had slipped innocuously through those gaping, dysfunctional cracks of bureaucracy. The doctors told me it would have to happen the next day and advised me to spend the night, as they were worried about the severity of my headache (still, curiously, no one brought up the post-lumbar puncture headache). We went home and fell into bed like it was the bed built by god – oh the sweet comfort of one’s own bed in moments like that!
Friday morning we found ourselves at the hospital, me feeling quite chipper with only a dash of headachiness and working away on the iPhone in emergency’s waiting room. Did I mention that all this was going down in the middle of us trying to put together the Winter 2011 Cinema Politica schedule? An old hat to triage and registration, I took quiet pride in my record-setting time between entering emergency and sitting in gown and hospital bracelet in emergency. And someone had changed the channel on the waiting room TV from the shopping channel to the cooking channel. Things were indeed looking up. But, as is common with post-lumbar headaches, what was a painless breezy morning started nose-diving into another chapter of grating pain. By noon I was in pain again and on the IV. Thankfully I was wheeled up to radiology by 2PM. Once inside I was laid down on the table like a piece of meat and a small team of incredibly curious onlookers gathered to watch this miracle of modern technology and science unfold (they were all nurses and doctors – or crazy people doing impersonations).
Laying there on my side with my back to the team of looky-lous eagerly staring down the contraption in my back that was to fill with the coveted brain champagne I tried to bring levity to the situation: “I’m like a maple tree hey doc?” Yes, he replied, “But one without any sap.” Third lumbar puncture. No juice. So, a fourth procedure was finally conducted, a little higher up the spine than the last, and eureka!! They hit the tiny well of CSF and it dribbled out while everyone applauded in their minds. I say dribble, because apparently I’m a chap with little brain juice to spare. I know this not just from so many unsuccessful attempts to tap me, but because even when they did find the stuff, they needed to tilt the table back and forth at extreme angles (head up in the air, then feet, then head) – kind of like getting those last drops of olive oil out of the bottle.
Four ccs of my CFS undergoing scrutiny in a lab somewhere in the hospital, I laid in the stretcher in one of the emergency ward’s rooms feeling strangely elated. I can’t really explain it, but I was overcome by a total sensation of comfort after those two lumbar punctures that day. I felt great – happy. Joyful even. And the headache was gone. That’s when the team of neurologists came in to see me, in retrospect such strange timing, a tiny isolated moment of happiness and healthiness in a long stretch of pain and agony.
After the team walked in and everyone was introduced, the head neurologist looked at me and said: “So how does a carpenter become a PhD candidate?” I laughed, we all laughed. It was a merry occasion after all! I felt great, the doctor was about to tell me that I wasn’t suffering from anything life-threatening, and world peace was right around the corner. He even told me to get up and walk around if I felt good for the next half hour. Confirming the medical conspiracy, he didn’t mention the post-lumbar puncture headache either. The nurse in radiology was the first to break ranks and had warned of the evil head pain side effect, advising I stay horizontal for at least 24 hours. No one has seen her since…
So they left and the headaches came back with a ferocity so intense I couldn’t bare another minute in that place. The CFS was clear – only a bit of blood, likely from the needle going through the cartilage. My other tests looked relatively OK. The head neurologist thought the “crowding” theory was an unlikely culprit for the migraines. He said I should get an MRI then see him once the results are in. A few more tests and a few more hours later and we were heading home in a taxi. Here’s the catch though: as we were leaving emergency I mustered all my strength to ask through a thick curtain of pain: “Should I have some kind of prescription for the pain?” Oh, the nurse wearing dirty jeans and sneakers said, “Just take some Tylenol and you’ll be fine.” Not in the mood for a debate, we poured ourselves out of the building and slid home and into glorious Bed once again.
On the weekend the pain was intense and unbearable. We called friends and some, those incredibly reliable and selfless individuals we are so fortunate to know, came by with pills. But the few pills only offered teeny plateaus of 6 on the pain meter, while the 9s returned with terrifying temerity. So on Monday I took a cab three blocks (still couldn’t stand or sit up) to our walk-in clinic where they informed me that there was in place a policy that didn’t allow for prioritizing. Looking at the 60+ people with sniffy noses, sore throats and upset tummies, I thought, “Right. That makes total sense.” After half an hour of waiting I had sweat through my clothing, my body was violently shaking and I vomited in my mouth. Others probably saw a junky in withdrawal. To stop myself from going fully down the rabbit hole I desperately stared a spot on the dirty floor, imagining my body gently laying there, horizontal and therefore back in the plateau of sixes. I finally engineered some mental pulleys and walked to the desk to tell them I was going to leave, lest I come undone in their waiting room. I must have looked quite awful, because they immediately abandoned their policy and prioritized my ass straight into the doctor’s office. Once the nurse left the room, I threw myself onto the table and finally laying down, cried like a baby for fifteen minutes.
The doctor appeared some time later and immediately prescribed me painkillers. “You should have been on morphine this whole time – four lumbar punctures, good god!” I went home and began gobbling those little yellow pills, one every four hours, and the pain began to subside sluggishly, like the tide at night.
Two days later I began itching like a maniac. Then one morning I lifted my shirt to get to the bottom of this bout of itchiness and there it was: my body was covered in bright red hives. To make this part of the story short, needless to say, I am violently allergic to morphine, and more prescriptions and much discomfort later, the rash is gone. Oh, did I mention a side effect of morphine allergic reactions? Yep, you guessed it: headaches. Two days ago the rash disappeared and so did the headaches. I’m back in the land of the living!
So delighted and energized was I that don’t you know I ran through the house in the dark and stubbed my baby toe beyond recognition. So I have a bit of a limp, but I am hobbling around with a glow too – my brain seems OK, I don’t have a rash fit for a horror film, no headaches, no hospitals, and 2011 has begun!!
I’m waiting for the MRI still, but I’m sure the test will just confirm what everyone already knows: I’m a dorky, awkward, wordy, opinionated, overworked individual looking for life between worries about mortality, the future, and yes, all those who are so much worse off than me.