The first case of post-lumbar puncture headache was noted in the nineteenth century. In the early part of the twentieth century, doctors began documenting cases involving patients suffering from symptoms resembling that of a post-puncture headache, but without the puncture. These low CSF volume headaches came to be known as spontaneous intracranial hypotension, or spontaneous spinal CSF leaks. The condition became more recognized throughout the latter half of the twentieth century through pioneering work by neurologists like the late Bahram Mokri, who spent much of his forty years at the Mayo Clinic researching and treating cerebrospinal fluid leaks; but even today a solid body of research on the subject is only just beginning to emerge. This makes it an exciting time for researchers, as nearly any new data about spinal CSF leaks breaks new ground, medically speaking; and a frustrating time for clinicians, as there is little in the way of hard facts to offer patients in terms of prognosis and recovery. The team of doctors at Cedars-Sinai in Los Angeles, including neurosurgeon Wouter I. Schievink, and the team of doctors at Duke University, including neuroradiologists Linda Gray-Leithe and Peter Kranz, are the current top clinician-researchers in the field, pushing for and performing valuable research, inventing and refining pioneering treatments, mentoring other physicians in the diagnosis and management of cerebrospinal fluid leaks, and learning from the patients they treat.
The history of evolving medical knowledge of cerebrospinal fluid—its importance, its function, the problems that emerge when the system it’s a part of becomes compromised or otherwise out of balance—is one of independent discoveries, sometimes the same discoveries made by different people at different times in different parts of the world. Even now, the challenge is to disseminate basic facts and protocols for treatment among doctors of different specialties, so that this obscure body of knowledge can be more widely shared, and offer patients better avenues toward treatment. It is somewhat telling that the first major symposium on spontaneous intracranial hypotension to take place anywhere in the world, bringing together researchers, neurologists, primary care doctors, nurses, physical therapists, other medical professionals, and patients, happened only as recently as October 2017.
The great sea within us, whose tides peak in the mid-to-late afternoon and in the early hours of the morning, which ebbs and flows according to its own mysterious process, is a secret, pooling in and around our brains. “The soul swims in the CSF,” the naturopaths say, and perhaps there is some truth to it. Certainly there is some complex function this fluid serves, some purpose it has that we notice only in those moments when it affects us adversely, swelling our heads at permanent high tide, or draining away through a tear too small for even a mechanical eye to see. And the work keeps going, physicians diagnosing, specialists scanning, patients describing, all of us swimming toward understanding.
11
May 2015
Back at the hospital, I know where to go now. I know where all the couches are where a person can lie down because her brain fluid is leaking; the place in the waiting area with the double-wide chairs, wide enough to wedge yourself in sideways, your head resting on the wooden arms; the not-too-conspicuous spot with a cushioned bench that’s not too impolite to sprawl out on. But today, two weeks after the blood patch, I am okay. I don’t need to lie down. I’m able to walk to the check-in kiosk and smile, give my name, sit down in a regular-wide chair, listen to the sounds of the talk show on the television behind me, hear an old couple to my left argue about going to jury duty, the woman scolding the man for not getting a doctor’s note, telling him he’d be arrested for not showing up. It’s not at all like the last time I was here. This time, I answer questions. I don’t struggle to sit upright, to walk. I smile and make small talk and understand what people say to me.
This time, I’m here to have another CT scan and films because of that pesky dens fracture the doctors noticed in my second cervical vertebra. Normally, they said, this is the kind of thing they see in car accidents or terrible trauma, and normally it’s the kind of thing they see acutely. In other words, it’s not the kind of thing you normally just walk around with. It appears to be a very old fracture, but the question is whether or not it has any involvement in what’s been going on, whether it has anything to do with the leak or the pain in my head. I can’t imagine that it does; I’ve ridden roller coasters and done headstands in yoga for years without any consequences. Unless this CSF leak is the consequence, finally catching up with me after so many years of recklessness.
I know what this old fracture is from: My sisters and I fooling around, doing gymnastics in the family
