That novel I’d been working on for so long, that stupid endless story I couldn’t get quite right, about the woman whose husband forbids her to play, her struggle to become well, to return to herself, to find the hidden music again—I’d written and rewritten countless times the scene where she finally finds a piano, where she confronts her new limitations at the instrument, where she tries to reconnect with herself and with the way she thinks, with who she is when she plays music. So many times I wrote it and revised it and reworked it and rethought it—and I never got to this moment. I wrote about her frustrations, her disappointments, her emotions upon being able to play again. But never that moment of hope. Of relief. Of realizing that she wasn’t broken. Of realizing maybe she was going to be okay.
PART THREE
Floating
The hallmark manifestation of SIH [spontaneous intracranial hypotension] is positional headache . . . . And yet, there are many facets of the disease that are not straightforward and remain poorly understood. Underdiagnosis remains a major problem. Many physicians still are unaware of the disease, or have little to no experience in its management. This problem is compounded by the fact that variant clinical presentations exist . . . . Spinal CSF leaks, the presumed etiology in most cases, are never detected in some patients with clear manifestations of SIH, despite exhaustive investigation. Finally, treatment remains challenging. Many patients recover well from the disease, but substantial numbers of patients suffer relapses and may have to undergo multiple treatments . . . . For some, the consequences of these deficiencies in our understanding of SIH can be severe. Long-term disability, with the attendant emotional and economic consequences, can have life-altering effects for some sufferers of the disease.
—P.G. Kranz, L. Gray, and J.N. Taylor, “CT-Guided Epidural Blood Patching of Directly Observed or Potential Leak Sites for the Targeted Treatment of Spontaneous Intracranial Hypotension,” American Journal of Neuroradiology, May 2011
13
June 2015
Weeks after the blood patch, the cautious optimism I’d been feeling has begun to drain away, like the slow seep of cerebrospinal fluid leaking out of a spine. All the old symptoms are back, with only one slight change. The fog and the scraping, prickling feeling in my head; that’s the same. The back-of-skull headache, though: That’s on the left side now.
It’s becoming clear to me that the blood patch has failed. I say “failed,” that the blood patch has failed, that perhaps I have failed, because that is the terminology, I’ve come to learn, when the blood patch doesn’t work. Failure. And yet the doctors I’ve seen haven’t been able to accurately describe success.
“Voodoo,” the neuro-ophth had called the blood patch, and when I’d asked why, he’d said, “Well, we don’t really know how or why it works. Some people theorize it’s something where the blood gets injected and then clots, and then basically that clump of blood floats up to where the leak is and just plugs up the hole.” The anesthesiologist who performed the procedure had described it more as pinching the bottom of a balloon to hold it shut and prevent the air from escaping. “So, not tying the bottom of a balloon to keep the air in, but just pinching it shut, which could allow air to leak out still,” I’d said, and he’d said “Yes, more or less.”
I’m assuming that’s what’s happened, that the clump of blood didn’t float up to where it should have, which seems unlikely anyhow; that the clump of blood didn’t pinch shut the balloon of my spine hard enough to keep things from escaping. That this leak is still leaking, slower perhaps than before. The blood patch has failed, but as the familiar pain returns, it feels more like the failure is mine.
I meet with yet another neurosurgeon, this time to talk about whether or not the old fracture in my neck could have played any role in causing the CSF leak, or with my continuing symptoms. I am back to being limited to twenty minutes of upright time, twenty minutes of normalcy, before the headache pain returns, trenchant and sickly familiar. I’m weepy in the waiting area from sitting up too long, and once the nurse practitioner calls me in, I cry while telling her my history, telling her about the leak and how I’m worried it’s back, that it never actually went away, that I don’t want to have to endure the barbarism of another useless procedure, a voodoo curse, a blind injection, a waste of time that makes my head a balloon that can’t float away.
The doctor comes in and performs the basic chitchat, the basic neurological exam. He shows me a model of the cervical spine, explaining what the normal anatomy looks like, and pointing out the difference between those normal things and what is happening in my actual, non-normal neck. He’s reviewed my scans, and it appears I have a fracture in a growth plate that appears to be pretty old, lining up with my story of landing on my head when I was eight. He also says I have a thing where a bone that’s supposed to be held in place by a ligament is actually fused to
