6
April 2015
I am back at the hospital for a consult with the ear, nose, and throat surgeon. I have spent the last three days flat, as instructed by the neuro-ophthalmologist, getting up only to use the bathroom, otherwise remaining in bed, on my back, drifting in the pain. I have tried to read about CSF leaks online, on my phone, holding it directly over my head as I lie flat, and have only discovered terrifying things. Worst-case scenario case studies in medical journals. Frantic, heartbreaking posts on message boards. I ask the physician assistant who leads me into the exam room if she can lower the chair back, whether it can be extended into something resembling a table, and she obliges, allowing me to be flat as I am asked yet again to recount my history.
When the ENT comes in, I recognize him. Not because I know him, or because he is a colleague of Gil’s, but because he is the kind of doctor I have encountered before. Skeptical. Suspicious. Dismissive, with the kind of surgeon’s bluster and confidence that edges on contempt for the patient. I am the patient.
“So, you think you have a CSF leak,” he says, and though I am lying down at this point and can’t actually see his face, the way he says the word think implies the eye roll he may have actually performed. I turn my head toward him as he walks to my side, extending his hand to shake mine as he introduces himself.
“I’ve been told that I might have a CSF leak, yes,” I reply, and he nods his head. He has a kind of gotcha! smirk on his face as he leans closer to me, and asks, “Then why are you lying down?”
I’m confused by this question, by his hostile energy, and for a moment I can’t even begin to answer. Lying down is the only thing that helps the pain even a little bit. Lying down is what a team of doctors literally just told me to do three days ago. Lying down is the only way I can manage to think, and even then just barely. I feel as though he’s interrogating me like I’m on the witness stand, like he’s trapped me in a lie, like he’s just enacted the big prosecutorial reveal and now the gavel will sound, curtailing the shocked murmurs from the gallery, and the case will be dismissed.
“Lying down makes it hurt less,” I say, trying to make it sound like a statement, not a question, and he chuckles, shaking his head, and tells me, “Get up.”
Later I would learn that there are different kinds of CSF leaks, and that mine was not the kind this doctor was skilled in treating. Later I would learn that skull-based CSF leaks—like, for instance, a leak located in a person’s ethmoid sinus, as the doctors suspected with me at this point—present differently than spinal CSF leaks, and never cause intracranial hypotension. With spinal CSF leaks, where a person is leaking from somewhere along the spine, lying down does indeed ameliorate some of the symptoms. But when a person with a cranial or skull-based leak lies down, cerebrospinal fluid can leak out through the nasal passages. And so for those kinds of leaks, being upright is ideal: The pressure in the head is negative, and therefore no fluid leaks from the nose. From this doctor’s perspective—a doctor who had only ever encountered skull-based CSF leaks—I was a malingerer of some kind, perhaps an attention-seeker, and, either way, foolish enough to fail his test. I felt better lying down? Not proof that I might have a spinal CSF leak: Proof that I was faking.
And yet I did feel better lying down. Lying down was the only thing that brought me even slight relief. “Come on, get up,” he said, and I struggled to sit up, struggled to explain that being upright made everything worse for me, and just at that moment, Gil came in. His hospital ID badge identifying him as an attending physician may as well have been a shining sword pulled from a stone, as immediately the ENT’s attitude changed from skepticism to deference. I listened to them discuss me as I lay back down again, hearing the ENT’s responses change from accusatory to something resembling professional interest, hearing my symptoms presented in third person, in doctor-speak, as I lay on the table, searching for patterns in the pocked ceiling.
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
