“You need to give it some time,” he tells me. “With the blood patch, we’re compressing the space there so the fluid is pushed upward, but we’re also trying to provoke an inflammatory response, so your body will attack the area where the tear is and work to heal it. We need to give it time to do that.” I nod my head, even though I know the feeling that I’m feeling is not an inflammatory response, not my brain adjusting to normal pressure, the leak sealed by blood and my body’s own insistence, but rather my leak still slowly leaking. The anesthesiologist tells me to keep in touch, reminds me that if I want to try another patch in the next few weeks, I can get in touch with him directly and forget about the neurologists. “We don’t need them,” he jokes, and I laugh.
Before returning home, I stop off at the floor of the hospital where the nurse works who saved the day for me and got me the blood patch. I hope she’s there today: I have brought her a thank-you card, a copy of one of my books. It’s all I can think to do, such a small gesture, and I worry on the way that I should have done something better, that maybe instead I should order coffee and donuts for the entire nursing staff of that department, the whole floor.
I feel woozy in the elevator, foggy after being upright for so long getting to my appointment, sitting through my appointment, standing to wait for the elevator. I arrive at the reception area and ask if the nurse is working today, and she is, and I am allowed to go back into the patient area to see her, and she recognizes me and embraces me, and I start to cry as I try to thank her for what she did for me that day, the way she fought for me and took me seriously and shared her fierce compassion. Her hug is strong, and she accepts the gift and my tears, and she says she just hopes I was able to get some relief.
“Did it work?” She asks. “Are you all better now?” I want to be able to tell her yes, that her extraordinary work meant something, helped me find relief, helped me get justice, but she can already see in my eyes the disappointment, the truth. I say, weeping, undermining my own attempt at optimism, “It’s too early to tell, really. But I’m standing up now, walking around. You helped me do that.” She squeezes my arm and wishes me well and hugs me again. “I hope you get the thing that fixes you,” she tells me, and I say, “Me too,” and head to the elevators, to a taxi that can take me home.
Large-volume lumbar epidural blood patches, an approach adapted from the treatment of post–lumbar puncture headache, are often used for treatment of spontaneous intracranial hypotension and can be effective immediately. However, it remains unclear how such therapy might actually address the underlying problem of spontaneous CSF leaks, given that when visualized, these leaks are most commonly observed in the thoracic region, not the lumbar region. One possibility is that these nondirected “patches” increase CSF pressure by displacement of volume in the spinal canal, thereby alleviating symptoms until spontaneous closure of leaks can occur. Although this technique can be effective for some patients, it is not as effective as epidural blood patching performed in the setting of post–lumbar puncture headaches, is generally less effective when the patch is placed distant from an identified leak site, and may not achieve durable results in a significant proportion of patients. Reports of the overall rates of success for lumbar epidural blood patching vary significantly. While some series report success rates in excess of 80%, several studies have found success rates to be substantially lower, and several authors have reported success rates of <50%.
—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
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Just under two weeks since the second blood patch, it has been determined that the patch has officially failed, and so the next prong of attack is three days of infusion treatment, which means three days of being hooked up to an IV for eight hours straight, getting massive amounts of pain medication injected straight into my veins—the goal being to help bust through the awful pain cycle of constant headache and give my brain a chance to rest.
The infusion center is located on the same floor as the headache center, and each patient receiving infusion treatment, whether for chemo or for migraine headaches, is placed in a room with a comfortable reclining chair. My neurologist has told me to arrive by 8 A.M. and expect to be there until 3 or 4 in the afternoon. I’m allowed to have my phone with me during the treatment process, so I queue up podcasts to ready myself for the long day. The first day of treatment, I’m assigned a nurse who seems quite strict. She has a Germanic accent and doesn’t smile or make small talk, but as a non-smiler myself who fails regularly at small talk, I try not to take that as a bad sign. She checks my vitals and seems mildly curious about my diagnosis of CSF leak, which she has never heard of before, but quickly moves on to explaining the process to me. Basically, I will sit in a reclining chair and be hooked up to an IV. I
