But as painful and uncomfortable as it is, lying there on the table, trying not to shiver in the cold dark room, my hand spiked with pain, my other arm squeezed in a cuff, a catheter in my back, and a needle in my spine, for just a moment I experience a revelation. I can actually pinpoint the instant the injection of fluid is enough to bolster my brain and make it float again, because as I lie on the table, I feel myself come back to myself. I find myself exclaiming, through my tears, “Oh my god, I can think again,” and there is this sudden rush, this undeniable sense of the me who is Me finally emerging from the shadows, fully inhabiting my brain, able to exist again. I hear the head anesthesiologist laugh and say, “Good, it’s working,” and the pain management guy apologizes for being unable to provide me with that fentanyl cocktail he’d promised and says he’ll bring me tramadol, and my back is wiped clean of contrast and medication and blood, and I—me, Me, the me who feels like myself, the me who can think—I am turned over onto my side and transferred to a rolling bed on my back and the fluorescent lights move above me and then the tramadol brings me some relief as I lie in the darkened, curtained waiting area, my back sore, my hand purpling from the assault, my brain allowing my mind to feel like myself again.
It takes two weeks for the bruises to fade, so by the time I have my follow-up with the anesthesiologist at the pain clinic, they are yellowish-greenish ghosts on the back of my hand. “How are you feeling?” he asks me, and I tell him I’m not sure. My back and leg didn’t feel as bad as they did after the last blood patch—maybe because they did the injection a little higher this time, and also got it in the right space without hitting a nerve—and my head also didn’t feel as bad as the last time, no intolerable, head-exploding pressure. But I’m worried, because although I spent at least five days after this blood patch in bed, resting, the fog is back, and the me who is Me is receding again, and the familiar headache is beginning to replace the post–blood patch headache.
“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
22
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 will be given a series of medications, in a specific order, normally designed for migraine patients. Some of these medications will be for pain, some for inflammation (in other words, more steroids). They will be administered in a cycle, so each dose will be repeated twice throughout the day. I will likely sleep through most of it, thanks to the diphenhydramine and lorazepam they will give me (basically, Benadryl and Ativan), and then, once the medications have all been administered via IV, I will be free to go home. This process will be repeated for two more days, for a total of three days in a row of headache attack meds. Then I will need to continue taking a course of steroids, tapering off over the course of a week. And then, theoretically, my head pain will improve—if not the leak headache itself, which of course these medications are not able to fix, then the secondary, overall headache I have from having the leak for so long.
Once I change into the requisite gown and no-slip socks, I return to the recliner and am handed paperwork about the medicine I will be given. I am to sign each packet, one for each medication, to indicate I understand the risks. Diphenhydramine and lorazepam I am familiar with; many o
f the others I have not yet encountered.
Prochlorperazine. Treats severe nausea and vomiting. Also treats schizophrenia. This medicine may cause the following problems: Tardive dyskinesia (a muscle disorder that could become permanent), neuroleptic malignant syndrome (a nerve disorder that could be life-threatening).
Valproate sodium. Treats seizures. Possible side effects: blistering, peeling, red skin rash; sudden and severe stomach pain.
Methylprednisone. A steroid. Treats inflammation. This medicine may cause mood or behavior changes.
Magnesium sulfate. Prevents seizures, especially in pregnant women with severe toxemia.
Dihydroergotamine. Also known as DHE. Treats migraine headaches. Possible side effects: chest pain, confusion, sudden or severe headache. This medicine may cause the following problems: risk of heart attack or heart rhythm problems; increased blood pressure; higher risk of stroke.
If I have any negative reactions to any of these, the nurse tells me, we can remove it from the infusion cycle. “Do people often have negative reactions?” I ask. Her face remains neutral as she tells me, “DHE can be difficult. But we can talk about that when it’s time. Now, what would you like for lunch? We are allowed to order you a sandwich from Subway.”
I sign the papers, indicating my understanding, request a turkey sandwich with yellow mustard, and recline the chair as far back as it can go. The nurse brings me warm blankets and dims the lights, and once the IV is placed, I begin to drift off in a haze of lorazepam and diphenhydramine, listening to a podcast on the history of the English language.
From time to time, the nurse reappears, swapping out an IV bag for the next medicine and making sure I’m doing okay. Every once in a while, she rechecks my blood pressure. I am groggy for most of this, and don’t really notice any reactions to the medications I’m being given. Before the DHE, however, the nurse comes and sits by my side. “Now,” she says, looking even more stern than usual, “this medicine you’re about to have administered. Some people have very strong reactions. For some people, they say it feels as though they are having a heart attack. It narrows blood vessels, which for some people helps them, but for others can feel uncomfortable.”
“I don’t think I want to do this,” I say, but I’m sleepy, and not putting up much of a fight.
“How about this,” she says. “I will stay with you while the medicine is administered, and if you feel uncomfortable from the effects of it, we can remove it from the afternoon cycle of medicine and not include it over the next two days.”
I nod, and she puts the bag of DHE onto the IV stand and does what she needs to do with my IV to start the medicine flowing. She sits down next to me and holds my hands, looking directly into my eyes. “It will take a few minutes,” she says, “but if you feel bad, just squeeze my hands. Okay?”
“Okay,” I say, and together we wait.
It doesn’t take too long for me to begin to feel something. “My chest feels a little tight,” I tell her, but what’s really terrifying is what happens next: My entire brain begins to feel tight. But not just tight; it’s like my brain is suffocating. It feels as though it’s being squeezed from the inside out, like someone is siphoning all the liquid from inside it, like there’s a liquid center that’s rapidly being sucked out. “Oh god, my head,” I say, and start to cry. The scraping headache I’ve felt for so long—the one I always describe to my neurologists as feeling like someone’s taking a melon baller and scraping out the inside of my skull; this is exactly what that feels like, except all over my brain, instead of just the bottom of it. My heart is racing, and my chest feels tight and my brain feels tight, and I’m squeezing the nurse’s hands as tightly as my brain is squeezing from the medicine, and she’s telling me I’m going to be okay, that it’s almost done, that we don’t have to do it again, it’s just the narrowing of blood vessels, the pain of constriction, and it will be over soon.
And then it is. I’m given more lorazepam, more diphenhydramine. Tissues to wipe my tears. The nurse tells me we’ll skip the second dose of DHE scheduled for the afternoon, and that she’ll make a note to not include it in the list of meds for tomorrow and the next day. She brings me my Subway sandwich, and I eat it awkwardly, trying not to bend my IV elbow too much, and then I retreat into the haze of the relaxation drugs as I await my second round.
When it’s over, I take a cab home and sleep until it’s time to wake up the next morning and do it all over again. Show up, change clothes, sign forms, get IV, settle into recliner with blankets, drift off in a drug haze, eat a Subway sandwich, fall asleep to more podcasts, groggily find my way home, and do it all over again for one more day.
After that, I take steroids for another five days to taper off the bolus I’ve been given during the days of infusion. I don’t like how these steroids make me feel. The dexamethasone I took before made me productive, even if that productivity was ill-advised; but the prednisone makes me angry. I hate everything. Luckily, I am also sleepy for most of the time I’m on the tapering course, sleeping off the three days of groggy medications, sleeping my way back into the fog. So my anger is limited in scope somewhat. It’s hard to be irritated in dreams.
Weeks later, my overall headache pain has been improved by the infusion treatment, but the leak headache is still there, meaning that if I’m upright, my head hurts, and of course the brain fog is a constant companion. My routine now is to mostly lie in bed, doing light chores and minimal activity in the mornings when I’m clearer, and trying to be more horizontal at the end of the day, when everything seems harder. When I lie there, in bed, I wonder if this is just how it’s going to be for the rest of my life. The last time I spoke with the neurologist, she told me that even if the hospital had the diagnostic tools to find the source of the leak, they wouldn’t be able to fix it. “No one here can do it,” she tells me, leading me to wonder: Why the hell am I here then?
23
December 2015
I’m in my neurologist’s office, crying, because this is what I do now, even though I know this will be codified in my file as Depression, Recurrent, Mild. And yet I can’t go on like this. I can’t keep coming to appointments and filling out forms and answering the same questions—Are there any events that have affected your headache? Have your headache symptoms or location changed?—when the problem is that I am leaking cerebrospinal fluid and no one can help me.
“I need to be fixed,” I tell her. “I can’t live like this, just treating the symptoms.”
She hands me a tissue and makes a note in my file and tells me that actually, she just attended a neurology conference and heard a really fascinating talk given by this doctor from Duke University, in North Carolina. This doctor, who’s a neuroradiologist, gave a presentation about treating a patient with a spinal CSF leak, and my neurologist was thinking the whole time, This sounds just like my patient! She tells me that I should call this doctor at Duke and set up a time for a visit; that, from what it sounded like, this doctor’s team of neuroradiologists could help me.
“Do you need to give me a referral, or get in touch with them, or, how does the process work?” I ask, but she says no, she will give me a referral to send, but I have to call them myself. This doesn’t make sense to me, and also makes me less likely to do it. “Won’t they take it more seriously if the call comes from a doctor?” But she says that’s not how it works, and that it’s fine, and that if I just google the doctor’s name, her information will show up and I can call the number listed for her at Duke. That seems like a lot of work for a person whose brain isn’t working well, but I take down the woman’s name: Dr. Linda Gray-Leithe.
Her name has turned up in my internet searches before, along with the other doctor of last resort, in California, Dr. Schievink, and when I search specifically for her and Duke University and spinal CSF leaks and how to contact her, I find glowing mentions of her and her team on obscure forums and bulletin boards. Dr. Gray saved my life, people write. Dr. Gray is amazing. The entire staff at Duke is
incredible. Changed my life. Sealed and healed.
I find the website with her contact information, and eventually I get up the nerve to call. It seems insane, to call from Philadelphia and say I need an appointment with a doctor in Durham. My voice when I finally make the call is entirely uptalk and apology, even my hello and introduction are performed as an upward glissando of question marks. And yet the intake person seems not only not confounded or confused, but almost bored by what I have to say. He cuts me off, thankfully, before I can waver too long in my awkward apologetic request to be seen, and tells me they’re already making appointments for mid-January by this point and he would be happy to schedule me. He doesn’t question me, doesn’t wonder at why I, a patient, might be calling, and from so far away. He just tells me his name is Horace, and that I need to send him all my records: all my MRIs, all my CT scans, all my medical letters and doctor’s notes and printouts from hospital visits; everything I can possibly send that documents my experience with the leak. He does mention that Dr. Gray’s schedule is full for the foreseeable future, but assures me that one of her associates will be able to see me in January, probably a doctor by the name of Peter Kranz. I take down the address where these things should be mailed, and note Horace’s direct line in case of further questions, and then I begin the process of assembling the required records.
It is a challenge. Some things I have saved from my visits and can make copies of; other things I can access online and print out. Still other things I must request from various medical records departments, and pick up in person so as to expedite the process, which could otherwise take weeks. I take cab rides, lying down in backseats, and procure DVDs of my scans from two different hospitals. I assemble a packet of all the things I have gathered, and write a cover letter including all of my contact information and insurance information and as brief a summary as possible of my medical history as it pertains to the leak, and mail it to Duke.
The Beginning of Everything Page 13