The Beginning of Everything

by Andrea J. Buchanan

  On one of these walks, passing by a place that when I got sick was a neighborhood bar but is now a Korean fusion restaurant, I run into a friend, who stops me on the sidewalk by saying, “Oh my god! I haven’t seen you in forever! How are you? What have you been up to? Have you been working on another book?”

  I don’t have words, and I pause too long, and I see her panic with concern for me, but I can’t begin to answer. I feel like I’m visiting from another planet, and trying to explain what I’ve been up to is like trying to explain how to breathe air in a place with no oxygen. I have to explain the rocket, the liftoff, the journey, the suit, the apparatus, the lonely planet, the trip home. Working on another book seems just as foreign and unlikely an endeavor. Merely answering the question seems as foreign and unlikely an endeavor.

  Finally, I say something, because she is hugging me, saying, “Oh god, are you okay?” And I tell her I’m fine, I’m fine, I was sick, but I’m fine, and I’m divorced now, but I’m fine, and the kids are fine, and we’re all fine, and I’m lucky, but we’re fine.

  “What happened?” she asks, and even though she has a friend standing there with her, a stranger I’m sure doesn’t want to know what happened, this friend seems to genuinely want to know my answer, or my demeanor is worrying enough to demand an explanation, and so I begin to tell her—the flu, the cough, the strange headache, the diagnosis, the divorce, the nine months of pain, of waiting, of things falling apart, of worry, of not writing or thinking or doing much more than the basics of lying down and trying to be present for my kids, even though I was like a ghost of myself. I explain it to her, not the full story, because I don’t know how to begin to tell it then, but the facts of it, as I can remember them, and I try to communicate to her the strangeness of it, then and now, and how even standing there talking to her is a strangeness, because of how I’m standing instead of lying down, and how my head still isn’t used to standing, and how my brain is still recovering from all those months of bruising, and how I don’t know yet whether or not the leak is fixed, it’s been two months, almost three months since I was patched, and I won’t know for maybe six months if I’m really okay, whether the leak is truly repaired, and the whole time I’m telling her this, I’m thinking What is her name?—this person I’ve known for roughly sixteen years, who lives blocks away from me, whose kids are the same age as mine. What is her name? I tell her the whole story without remembering her name, and she hugs me fiercely and says she’s so glad I’m doing better, and then she looks me in the eye and asks, “Can I tell, like, everyone in the neighborhood about this?” and I say sure, because that will save me from explaining, if I ever run into anyone, and they’ll all know what happened without having to ask me “What happened?” while I stand there pausing and saying “Well . . .” as I try to gauge what’s easiest to say.

  She says goodbye, and I continue on my way, but after standing and talking for so long, I’m exhausted. My brain tires so easily of telling stories, of understanding stories. It needs so much rest, and stories demand so much energy.

  I don’t mean to be an unreliable narrator, but sometimes that’s what happens.

  Sometimes I say, “I had a tough year, but it’s better now.”

  Sometimes I say, “Oh, the kids, they’re doing great. What about yours?”

  Sometimes I say, “Yeah, I had a weird thing happen with my brain, but it’s okay now, I think it’s fixed, it could be fixed, or I might have to go back, I don’t know yet, I just kind of have to wait and see, I’ll only know if I’m better if I stop being better, if it stops working, if I start leaking again, if the headache returns, then I’ll be able to say, oh, I was better for a while, but otherwise I just have to wait and hope my headache stays in the front of my head and not in back, and that I don’t get another cold and cough or sneeze, or bend over too far, or twist, or lift something that’s a little too heavy, but at least this time if it gets bad again, if I start leaking again, I know where to go, and I can just talk to the doctors there and go back again to get fixed.”

  Sometimes I say, “Good, I’m good. How are you?”

  Rebound intracranial hypertension (RIH) is a potential complication of epidural blood patching characterized by a postprocedural elevation of CSF pressure . . . . The mechanism underlying this phenomenon remains unknown and the onset of symptoms has been reported over a wide timeframe, ranging from days to years after [epidural blood patch]. Despite the small number of reported cases in the literature, our experience has been that this phenomenon is not uncommon. It is likely, in our opinion, that RIH often goes unrecognized.

  The primary clinical manifestation of RIH is headache, which may be accompanied by nausea, emesis, and blurred vision. Because patients with [spontaneous intracranial hypotension] typically also have headache as their primary complaint, and because experience with treating these patients is limited at many centers, the headaches associated with RIH might be mistakenly attributed to refractory [spontaneous intracranial hypotension]. As a consequence, treatment aimed at increasing CSF pressure, such as repeat [epidural blood patches], will be unhelpful for patients with RIH and could even exacerbate the condition. Awareness of this complication is therefore important.

  —P.G. Kranz, T.J. Amrhein, and L. Gray, “Rebound Intracranial Hypertension: A Complication of Epidural Blood Patching for Intracranial Hypotension,” American Journal of Neuroradiology, June 2014

  30

  February 2016

  Rebound, like spontaneous, is a funny word. There is an energy to it, a buoyancy, a lightness that seems to imply a temporary state, the moment just after you spring off a trampoline and hover, nearly weightless, in the air, and just before you land again, sinking down into the elastic place that launches you ever upwards. Rebound makes me think of relationships, the fling you have to get over the guy who broke your heart, and in that sense it carries with it a feeling of propulsion, of abandon, an almost predatory or at least pointed and specific kind of freedom. It makes me think of flying, after having been on the ground. Potential energy suddenly made potent.

  But my rebound high pressure is neither high-flying nor short-lived. It is a constant thing, my leap from the depths of those leaking days a launch into slow-motion suspension, a tense floating that seems to defy gravity as I pause mid-flight, high, my head tight with fluid.

  Imagine you are on an airplane, and imagine that you have a cold, or a sinus infection, and imagine that during the plane’s descent the pilot is required to circle for a bit before landing, and imagine that that altitude where the plane kills time is precisely the level of altitude that makes your sinus pressure unbearable. Your face hurts, your head hurts, it feels as though the front of your face is encased in pain. Perhaps you feel nauseated from it, perhaps the other passengers notice you crying. You can’t pop your ears to release the pressure, in fact there is no release, until finally, thankfully, the pilot announces the plane has been cleared to make its final descent, and moves down, down, closer to the ground, away from the altitude level that held your head in a vise.

  That’s what rebound high pressure is like, here on the ground, at sea level, in my house, in my room, in my bed. Caffeine makes it worse, salt makes it worse, sitting makes it worse, lying flat makes it worse. Afternoons make it worse, because that’s when cerebrospinal fluid production bottoms out, and the middle of the night makes it worse, because that’s when cerebrospinal fluid production surges again. My choroid plexus has been producing cerebrospinal fluid, circulating it and swelling it and creating a high tide in the dead of night and a low tide in the late afternoon, since before I even had a brain. And yet until now I’ve never noticed, never been sensitive to the high tides of the ocean in my head.

  When it’s bad, when I forget and have caffeine or a salty food, or lie down in my bed without the wedge pillow to prop me up, or even when I’ve done nothing to provoke it except be alive with a brain now sensitive to the ebb and flow of fluid, I feel not only the tightness in my head, the headac
he in the front of my head, behind my eyes, on the top of my forehead, I feel a heaviness and burning along my spine, just between my shoulder blades, where it’s theorized the leak likely was. I lean on ice packs, long and cold against my spine. Will this surge pry open the wound? Will the rising tide of fluid seep into the edges of the patched-up tear, like the rain that finds its way into my house sometimes, trickling through the brick, inexorably flowing toward a weak, leaky spot?

  Little is understood about rebound intracranial hypertension, even by neurologists and other doctors who work with headache patients. It’s generally noted as a new headache that develops after blood patching—which is confusing, since most people who receive blood patches are being treated for headaches in the first place. The rebound headache often has a different quality than the leak headache, though—frontal instead of occipital, worse instead of better when lying down, sometimes accompanied by nausea and vomiting and blurry vision—and while it generally develops within hours or days after patching, sometimes it can be weeks or even months until the headache reveals itself. The severity of these rebound headaches is not dependent on the volume of blood in the blood patch a patient receives; a patient can experience painful rebound intracranial hypertension regardless of whether they’ve been injected with 5 ccs of blood or 30. And there are some patients who receive large-volume blood patches and don’t experience rebound high pressure at all.

  It is all very much still a mystery why this happens to some patients and not others, why for some patients this is a state that persists for months or even years after successful patching. Even physiological explanations are merely theories at this point. One thought is that perhaps the blood injected to the epidural space during a blood patch acts like a kind of blood pressure cuff, squeezing the thecal sac (also called the dural sac, the protective membrane surrounding the spinal cord) and displacing the cerebrospinal fluid within it upward from the spinal canal and into the head. And yet this doesn’t explain the rebound symptoms of the patient who’s given 5 ccs of blood—which is not enough to squeeze or compress anything, really—or the complete lack of rebound symptoms in a patient who’s given 30 ccs—which is more than enough to produce pressure on the thecal sac.

  Another thought is that compensatory cerebrospinal fluid production—the body’s overproduction of CSF to compensate for a leak—may be a factor. While the volume of blood used in blood patching is not a predictor of who may or may not develop rebound high pressure, one factor might be: the length of time a patient has been dealing with a spinal CSF leak. While a person is leaking, their body’s natural CSF production is increased to compensate for the leak, and the longer a person has been leaking and thus overcompensating, the longer it may take for the brain and body to adjust to more normal levels once the leak is patched. This is the hose and faucet metaphor I used to explain to my children about my new headache situation after I returned home from the procedure they’d expected to cure me of my constant headache, and it makes a lot of intuitive sense. But that doesn’t fully explain the phenomenon either.

  Another thought is that people’s anatomy varies, and some people’s dura and veins are more compliant, more resilient, than others. Physiological things happen in people with spinal CSF leaks, and one of those things is that while leaking, the epidural venous plexus (a network of veins that extends from the skull base to the sacrum) dilates, meaning all those veins expand and become engorged, to compensate for the lower levels of cerebrospinal fluid. The elasticity and capacity for dilation in epidural and cranial veins varies from person to person, and that may explain why some people suffer more from rebound high pressure than others—some people’s veins may be able to dilate more without triggering any pain. The dura, too, varies: Although its medical name translates to “tough mother,” the toughness of it isn’t always uniform throughout in one person’s body, and the toughness or flexibility of one person’s dura can be different from the toughness or flexibility of another’s. Along these same lines, one person’s baseline CSF pressure may be much lower than another person’s, and so what’s high for the first person is normal-feeling for the second. Dr. Kranz explained this to me using the metaphor of a balloon: “It could be that you have a pressure of ten, and I boost it to eighteen, and then you have symptoms of rebound intracranial hypertension. But then here comes somebody off the street and I measure their pressure and they’re eighteen. You both have a pressure of eighteen, and yet you’re symptomatic and they’re not. Why is that? It may have something to do with the elasticity of the system. The person off the street, whose pressure is eighteen, may have a dura like a latex balloon that can expand and contract—but if your pressure is eighteen and your dura is like a Mylar balloon, we’ve pushed you to your limit. So every time you cough or bend over, or turn your head the wrong way or sit for too long, you’re pushing against a rigid system.”

  In a small study Dr. Kranz and his team did at Duke, they found that of thirty patients with spinal CSF leaks who received blood or fibrin glue patches, about a third of those patients had no rebound intracranial hypotension symptoms afterward, 43 percent had mild symptoms (treated with Tylenol and head elevation), 17 percent had moderate symptoms (treated with Diamox, usually administered orally, though in some cases via IV), and two patients had symptoms severe enough that they had to go back to the hospital and have their spinal fluid drained to get back to normal levels. These were all patients who were followed and treated based on their symptoms within days of their patches, and even with that kind of close monitoring, treating rebound high pressure is tricky, and varies from patient to patient. For doctors without much experience in treating post-patching rebound headaches in patients with CSF leaks, especially those patients whose rebound headaches develop months afterward instead of days afterward, it can be a real challenge.

  In the beginning, in the early weeks post-patching, this rebound pressure is a constant state for me, one that makes me long for the days of the leak, when lying down brought some relief, at least, however minimal, however short-lived. The rebound headache, when it surges, can’t be soothed the same way. The only thing that brings relief is time, waiting it out, surviving it. I also don’t fully understand it, I don’t understand why I still have this constant pain; although I’ve come up with that hose analogy to explain it somewhat to my kids, I haven’t fully absorbed the meaning of it for myself, I haven’t yet read about the mechanisms of rebound high pressure, I haven’t yet thought through what it is that these pain signals are trying to communicate, I haven’t learned yet by going where I need to go.

  And so, when I check in with my neurologist at the headache center about a month after my patch procedure, and she suggests coming back in for another round of infusion treatment to help ease the pain of this new constant post-leak-patching headache, I don’t think about how the word infusion means the pouring in of liquid, about how the process involves introducing bag after bag of saline and liquid medicine into my veins. I don’t think about how right now this pain is happening because my veins are already full, engorged and stretched to their limit, how it’s happening because everything is at full capacity. Instead I think, pain relief, and so I say yes, and I schedule the appointment. I return to the infusion center, I sign all the papers, I approve all the medications, I climb into the comfortable recliner and have prewarmed blankets laid over me, I am hooked up to the IV.

  Within minutes of starting, I feel worse. My head feels swollen, packed with cotton, stuffed to the breaking point, and I am nauseated, eye-blurred, forehead-stabbed. I adjust the recliner so that I’m tilted at an angle, my head elevated, but the pain gets worse. I call the nurse in and tell her I’m feeling bad, that whatever they’re giving me is making me feel terrible. She looks confused and somewhat dubious as she tells me that so far all I’ve gotten is saline. Saline. A part of me makes the connection, a part of me thinks Hello, that is salt and water, and isn’t salt the enemy right now, doesn’t salt make everything terrible, doesn’t salt gi
ve you a headache now and make your head try to explode? But then the Benadryl and lorazepam start to kick in and I become very sleepy, and I tell the nurse, “I don’t think I can do this, this isn’t helping,” but I’m also drifting off, and I hear her tell me that we can check in after this round of treatment, that we can reevaluate at lunchtime, and if I still feel awful, we can stop.

  By lunchtime, even with all the pain-fighting medicine coursing through my veins, I am miserable. My high-pressure headache is higher and more pressurized than it has been since the day after I was first patched, and I am beginning to realize what a mistake this was for me to do this. Why did my neurologist think this would help? Why did I? I sign myself out of the infusion center at lunchtime, woozy with pain and pain medicine, and cancel the next day’s appointment, the second part of the two-day process. Once home, I post to the rebound high-pressure leaker group, text with my leaker friends, “Oh yeah,” they all agree, “you’re in rebound high pressure right now! That kind of infusion thing will only make your rebound headache worse! Saline! Pumping fluids into you when you’re already sensitive to changes in fluid pressure!” If only I’d consulted them before I’d decided to do this. If only my neurologist had understood this. “Take an over-the-counter diuretic,” they advise me. “Drink dandelion tea.” “If you have to lie down, use the wedge pillow and keep your head elevated at thirty degrees.” “Use an ice pack.”