I am asked to sit up again, nicely this time; asked to lean forward, asked to try to produce cerebrospinal fluid from my nose. “I’ve never leaked anything out of my nose,” I tell the doctor. “I just have a terrible headache.” But he urges me to try. Sitting forward, bending forward, leaning over, the pain is excruciating, and after a few minutes I can’t go on any longer, I’m crying from the pain. The physician assistant sprays something in my nostrils, and the ENT examines, and they try to get me to lean over again, to leak fluid. If they can get a sample, they can test it to see if it’s really cerebrospinal fluid; it will help determine if this is really a CSF leak. I lean over for a moment, but it’s awful, and I’m grateful to hear Gil step in, to hear the irritation in his voice as he tells the ENT it’s too much, it’s not going to happen, I’m in too much pain to keep sitting in that position. I lie back down, everything pain now, and hear them discuss things in doctor tones as they peer at the computer screen showing my MRI, the notes from my primary care doctor and the neuro-ophthalmologist. Soon they return to my bedside, and there is a plan. I should have a consult with a neurosurgeon in a few days. Next Monday I will have another MRI, this time focused on the orbits, and also a CT scan of my head and neck. Tuesday I will check in with the ENT. And then Thursday I will be scheduled for through-the-face brain surgery.
PART TWO
A Mystery
A patient presents with a new headache that occurs shortly after assuming an upright position and is relieved by lying down. Although such a positional headache pattern is well-known following a diagnostic lumbar puncture, the spontaneous onset of an orthostatic headache is not well recognized and the patient may be diagnosed with migraine, tension headache, viral meningitis, or malingering. This has been a typical scenario for many patients experiencing spontaneous intracranial hypotension . . . [and] an initial misdiagnosis remains the norm. Unfamiliarity with spontaneous intracranial hypotension among physicians in general and the unusually varied spectrum of clinical and radiographic manifestations may all contribute to a delay in diagnosis that often is measured in months or even years and decades.
—Wouter I. Schievink, “Spontaneous Spinal Cerebrospinal Fluid Leaks and Intracranial Hypotension,” JAMA, 2006
7
The days pass by in a series of blinks and I fumble my way through an appointment with a neurosurgeon the ENT suggested I see. My sister drives me, lets me lie down in her car, helps me joke about my weird leaking brain. The neurosurgeon listens to my now rote recitation of my history, thumbs the file from the ENT, and says sure, this probably really is a CSF leak, and says sure, the through-the-face surgery to fix it is probably fine—if that’s really where the leak is. If not, the surgery could actually cause a new leak, and there’s also a significant risk of my losing my ability to smell. But it’s up to me. My call.
I blink and then I am somehow back at the hospital, waiting for the next MRI and CT, a nurse taking pity on me and allowing me to lie in a free bed while I wait for the CT, while they insert the IV I need for the MRI, while they fix it after it fills with blood. I’m given powerful antibiotics in advance of the through-the-face surgery that it is my call to have done. It is some kind of fluoroquinolone, and I take only one pill before I notice my previously injured ankle tendon feeling strange, and then google to see if that could somehow be a kind of side effect and discover a host of warnings about the dangers and risks of fluoroquinolones (including tendon problems), and I stop taking it.
I blink and days later there is a flurry of activity, sudden phone calls and intense consultations, when the CT scan of my neck is shown to have revealed a secret fracture—an old injury to the second cervical vertebra. The first vertebra, C1, is where the skull attaches to the neck. The C2 vertebra, sometimes called the axis vertebra, allows the head to rotate. It is actually connected to C1 by a tooth-like protuberance called the dens, and it is this, the dens, that has appeared on my CT scan as damaged, fractured somehow, long ago. Looking up information about this anatomy, I’m pleased to read that the C2 and its toothy dens has a rare nickname: vertebra dentata. There is concern, however, that this fracture may be the source of my leak, that this vertebra dentata has in fact somehow chewed through my dura. But this seems unlikely to the ENT; he is more concerned with the shadowy spot around my ethmoid sinus. He recommends further CTs and X-rays of this old C2 fracture, a consultation with yet another neurosurgeon, all things that can be done after my surgery.
I show up the day of surgery and go through the motions of filling out forms, being checked in. Gil is there this time, and he handles the things that are too complicated, answering questions for me, doing the paperwork. I’m able to lie flat on a bed in the pre-op area, and this is a relief. I’m told the surgery will involve first pumping some glow-in-the-dark stuff up through my spine, which will evidently make anyplace in my head with a tear or leak light up, and then some kind of mesh being inserted and positioned over that lit-up area and secured in place. Then, after everything is sewn and patched, my intracranial pressure will be monitored to make sure there’s enough of it, and not too much or too little. The whole process will require me to spend four or five days in the hospital. None of this seems like a good idea. But I’m not sure what else to do about this leak in my head, and shouldn’t the doctors know better than I do how to fix it?
I’m waiting and waiting on a bed in the curtained-off room, hooked up to IVs in my hospital gown, and the ENT comes by from time to time, checking in. “Still leaking?” he asks, and I recognize this is supposed to be a joke. “Just checking!” he says, and continues, “You know, if you don’t have a hole in your head before I go in, you’ll definitely have one by the time I’m done. Think about it.” He taps the protective guard rails on the bed and strolls out. I’m concerned. I talk to Gil. None of this seems okay. The next time the ENT strolls by, we ask what the hold-up is, why the wait, and he says it’s almost time, and again introduces some doubt into the process, reminding me that this is my call. I don’t like the feeling I’m getting, like this surgery is a thing I’m forcing him to do. It doesn’t seem right, and I feel less confident that this is the right decision. He and Gil confer, and Gil says they’re waiting for the room, but there’s a chance I won’t have the surgery today after all, that instead we’ll just do the blood patch, the “voodoo” procedure the other doctor described. I keep waiting, and my vitals keep being monitored, and the crook of my arm aches where the IV lives now, and it’s cold and I stare at the ceiling and can’t sleep. Finally, after hours of waiting, the ENT comes back.
“I have bad news and bad news,” he says. The bad news is, we are not going to do the through-the-face surgery. He just doesn’t feel confident enough that that’s where the leak is. And the other bad news is that we can’t do the blood patch: The anesthesiology team isn’t set up for it; they say they don’t do them here in the hospital anyway, blood patches are done on an outpatient basis, in a clinic, which is in a different location. So after waiting all day, being hooked up to machines all day, after stressing all day over whether I’m making the right call, I’m free to go. The ENT says to call to set something up with the pain clinic where blood patches are done, but Gil isn’t having it. Something needs to be set up for us, and it needs to happen now. The ENT strolls out and Gil goes after him, and I close my eyes as someone takes my IV out, removes the blood pressure cuff from my other arm. Eventually Gil returns, a resident comes in to take my information to facilitate an appointment with the pain clinic, and I go through my history all over again. My hospital records will somehow show this waste of a visit as my having had actual surgery, a fact that will have to be corrected every time I review my history with a new doctor.
8
I am back in bed, as I have been for weeks and weeks now, flat on my back, unable to read or watch TV or even have conversations, just kind of floating in this fog, trying hard to think.
I can’t write—in my fog, I have that tipsy-drunk urge to chat, but also the tip
sy-drunk cognitive impairment that makes typing almost impossible. Everything evaporates into the sensation of staring at the ceiling, because that’s mostly what I do.
It’s cruel, in a way, that I’m forced to have all this time and yet not be able to write. It’s almost exactly my fantasy—for once, I’m free of the endless stuff that’s never ever fully done: the chores and homework helping and school pickup and food preparation and dinner cleanup and laundry and housework and and and and—and yet I’m free from having to feel guilty, because I’m literally unable to do those things. It’s seemingly the perfect scenario: I could write and not feel guilty about someone else picking up the slack of all the things that are left undone.
Yet I can’t write, and no one’s picking up the slack. My brain is too bruised from banging around in my skull without a cushion to do anything, and during those rare times when I’m forced to venture downstairs, I descend to find that no one else has done anything either. Everything is exactly as I left it weeks before, a tribute to the last time I’d been upright: the cat puke a hard crust on the floor, the dust fortified into corners, the dishes towering unscraped in the sink. I feel torn upon seeing this, some faraway, fog-padded part of me feeling humiliated, angry; and yet at the same time strangely energized, the ever-rationalizing part of my brain telling me You can just clean everything up! What a great idea! as I attempt to straighten up the mess, so happy to have a project, some measure of usefulness. Until the headache reasserts itself with a vengeance, reminding me that I can’t trust my brain, that I shouldn’t ever think that anything I think is a good idea, and I go back to bed, where I’m greeted by the strange neurological punishments of having been upright: the nauseous rush, the pressure on the left side of my head that’s always followed by my arms disappearing and my words not speaking and my tears crying in too-loud sobs I can’t control.
I can’t write, but I can sometimes think, a little, about things I’ve written. Before this whole thing, I’d been working on a few projects. One was a novel set in the 1930s, during the Works Progress Administration era, about a pianist struggling to come into her own as an artist. Another was about a teen music prodigy who abandons her studies at a crucial point, runs away to meet up with a person she fell in love with on a video game server, tries to figure out who she is if she no longer does the thing she’s done her whole life. And another was about a young woman, training as a pianist at a prestigious conservatory, suddenly sidelined by a mysterious illness doctors struggle to diagnose but which she fears she’s brought on herself, fears she’s using as a way to hide from the difficulties of her life, fears she’s actually dying, fears she’s pretending to be a person who’s dying to escape having to be a person who’s living.
The larger trend of these stories and how they relate to my current situation is not lost on me.
I’d most recently been working on revising the 1930s novel, the one about the woman whose artist husband had forbidden her to play, and how she found her way back to music after repression, depression, a suicide attempt, hospitalization. I’d had feedback that the story felt “too small,” so I’d been working on trying to enlarge it. I changed the voice. I wrote a lot about time, the experience of time and how it changes when you’re performing music, and how it changes when you’re sick, when you’re in the alternate universe of medications and bed rest, when you’re in recovery, when you’re once again part of the normal world.
In a way, this CSF leak of mine is almost research. Because here I am, outside of normal time. In the world outside my bedroom, life continues. Alarms go off in the mornings, the mail comes, dinner is made, appointments are kept. But in here, time is different. I feel closer to my main character than I ever had during the writing process as I lie in my bed, unable to think clearly or do anything that requires thinking and sitting up at the same time, like playing the piano, like writing, like parenting, like living my life.
There was a lot I’d gotten right about time, I’m discovering, the way I’d written about it for my protagonist. The way time moves when you’re very sick, the way you can make days pass simply by closing your eyes, the way you float endlessly into the future, arriving from who knows how long ago in the past. The way time bores you but, due to your sickness, you don’t mind being bored. The way you can stare at the ceiling and not be impatient with the way absolutely nothing happens. The way music moves through time and how the sound exists in one moment, and then the next, and the next, and the next, and how we’re able to fool ourselves into thinking it’s a whole thing, when really it’s just a stuttering passage, a succession of moments pretending to be seamless. Sickness is like that, making it easy to glide through time as if it’s not perpetually one moment stitched to another, landing us foggily in the midst of the next moment until we realize, Yes, of course, here I am.
What I didn’t get was the impotence. The way time makes you a prisoner. The way you must lie there knowing that mail is being delivered, that dinner needs to be made, that appointments need to be kept, and you cannot get it or make it or keep them. The way time heals you in real time, and you can’t make it go faster. The way you’re stuck, lying down, staring at the ceiling, feeling your way through the fog, waiting as one moment moves from the next to the next to the next.
Or the dependence, the way you must rely on favors from friends and strangers and the estranged. Your son’s classmate’s mother, whom you barely know, who volunteers to drive him home every day. Your daughter’s friend’s parents, who make food and bring it over in carefully labeled containers. The friend you haven’t heard from in almost a year, who offers to take the kids, who orders in dinner. Your soon-to-be-ex-in-laws, who stay for a week when your soon-to-be-ex-husband can’t, who straighten up what’s been left a mess and cook things you normally wouldn’t want to eat but devour now, lying on your side, since you can’t sit up, with gratitude.
I try playing the piano once, during those staring-at-the-ceiling, time-bound, writing-less days when I rarely get out of bed, when I have maybe five, ten minutes of being upright before the pain sets in. I need to know if I’m still me. And so I go downstairs and sit down at the piano as a kind of test. I rush through thirty seconds of a Chopin nocturne, sketching it more than playing it. It feels like I’m listening to myself underwater, moving underwater, my brain moving so slowly, slower than my fingers, but I’m able to play it, I’m still me, and then my time is up, the pain returns, the pressure in my head unbearable.
9
May 2015
A week before my forty-fourth birthday, I have the “voodoo” procedure. I google it beforehand and find a PDF brochure titled “Let’s Talk About Epidural Blood Patch Information” with a stock photo of a very sad-looking woman holding her head in her hands. As the neuro-ophthalmologist had told me, the epidural blood patch is similar to the kind of epidural administered in childbirth—only instead of a giant needle piercing your back with sweet pain relief, you’re injected with your own blood, which they extract from you at roughly the same time you’re being shishkabobbed in the back. The only plus side of this procedure versus the epidural I had during childbirth is that after this one, I do not also have to have a baby.
Arranging this is only slightly less stressful than my aborted surgical procedure. The day of the non-surgery, Gil and the ENT speak with the anesthesiology team about getting me set up at the pain center for a blood patch, and by the time we leave the hospital, everything is arranged, everything seems to be in place. Then the next day, just as I’m about to leave for my epidural blood patch appointment, I receive a call from the pain center: A team of doctors has reviewed my files and decided I don’t need the procedure after all, have a good day. Gil calls them back, using his doctor powers to argue with them, and finally the head of the pain center agrees to see me—as long as I agree to take migraine medication over the weekend to see if it helps my headache. I’m irritated by this request, as I know it will be fruitless, but I take the medication as prescribed, and, predictably
, feel nothing other than fatigue and the constant pain that is my life now.
Finally arriving at the pain center, no more calls to deter us, no more hoops to jump through, the head anesthesiologist welcomes us into his office, his exam table thoughtfully arranged for me as a flat bed. I climb on and apologize for having to talk to him while lying down, but it’s all I can do. I’m weepy already from having been upright to get myself ready to come here, from walking from the car to the office building. Gil and the anesthesiologist talk above me as I lie on the exam table, saying words like fluoroscopy and incidence and recovery rate. They talk about my narrow escape from through-the-face-brain surgery, about how the migraine meds didn’t make my headache go away, how my symptoms are “classic CSF leak,” the positional aspect of the headache, the occipital pain. They both urge me to have this blood patch done. “I can do it today,” the head anesthesiologist tells me, “or you can wait until Wednesday, when I’ll have the room for fluoroscopy, it’s up to you.” I look at Gil, who tells me he thinks I should do it, and that I should do it today. I listen to them debate fluoroscopy versus no fluoroscopy, and eventually I realize they are waiting for me to say something. I’m crying, I don’t know what to say. I’m terrified of this procedure and I don’t want to have to do it. But it feels like it might be my only choice. “I don’t know,” I say, but Gil says, “You’re in bad shape. I think you should do it. Like, as soon as possible. Today.” And I can’t argue with that.
The Beginning of Everything Page 3