The Beginning of Everything

by Andrea J. Buchanan

  He explains today’s tests—how they’ll do a lumbar puncture and take a baseline pressure reading, even though opening pressure doesn’t really signify anything clinically one way or the other, and then inject radiopaque dye and put me in a CT scanner to see if they are able to see the leak in action. “And if you don’t?” I ask. “Well, the doctor will talk to you about that,” he says. “But probably we’ll patch you up anyway. To be honest, most of the time the leaks don’t show. If they do, then we know exactly where the leak is and we can be more precise about where we do the patching. But if they don’t, we can still patch you.”

  After all the questions are done, he leaves, and I take a lorazepam to help with anxiety and claustrophobia, though I’ve been assured that I won’t have to go too deep into the CT scanner or be there for too long, and I consider adjusting the mechanical chair to sit myself up more before the doctor comes in to talk to me, because isn’t this taking it a little too far, lying down so flat, isn’t this a little self-indulgent, I’m not that bad, and isn’t giving in making it worse?

  Dr. Kranz comes in, baby-faced and tall, and I feel bad making him hover over me as I lie flat, but he, too, seems to accept this as normal and not rude at all, and again I realize I’m in a different place here, a place where everyone understands the importance of being flat, where no one thinks it self-indulgent for a person to lie back in an impression of someone who is relaxing. He asks many of the same questions, and goes over the procedure in a little more depth, and confirms for me that this is, indeed, real, and that from my symptoms, I am indeed experiencing spontaneous intracranial hypotension, and that there are routine procedures here that can help.

  In the room for the procedure, I’m placed on my side and I’m glad for the lorazepam I took earlier as a needle is stuck in my back. The physician assistant and the nurses have a running banter I understand to have been honed over the heads of hundreds of other patients, like me, lying on their sides and terrified. The jokes put me at ease, and their easiness puts me at ease, and I find myself laughing even when they’re telling me, “Be still and try not to laugh,” and then the fluid is injected and although at first I feel an uncomfortable twang and then a nerve-twinging pressure, within minutes I feel a blissful buoyancy and fullness in my head. “Oh, I feel my brain working again,” I say, as they start to roll me onto my back and have me start moving from side to side and doing bridge pose and something they call “log rolling,” in which I am the log being rolled, and otherwise jiggering the fluid around so that it moves along my spine, the better to light everything up once I’m in the scanner. “Well, you’ve got some fluid in there now,” they say, and remark that that’s another sign that this really is a CSF leak, the fact that I feel so much better with this extra fluid pumped into the CSF space, making my brain float again after so many months without a cushion. I lie there, only slightly panicking and claustrophobic as I slide into the CT scanner up to my neck, and hope the images show something, anything, so that tomorrow the doctors will be able to know exactly where to place the patch, to fix this thing, to end this madness.

  That night, in the hotel, my sister brings in food, and a friend I’ve only known from the internet comes to meet me in person, and, buoyed by a floaty brain from the bolus of fluid injected earlier, which has not yet had a chance to fully seep out, I sit up while I eat dinner, for the first time in months, stay up talking and making jokes, for the first time in months, sit up on the couch instead of lying down and follow the thread of a conversation for more than an hour, for the first time in months. The fog lifts, briefly, and, for the first time in months, I feel almost normal.

  The next morning, before returning to the hospital for the procedure that will hopefully fix me, I get a phone call from the therapist’s office where I’ve been trying to set up an appointment for Emi, so she can talk with someone besides me about the stress and dissociation of dealing with a sick mom, divorcing parents. The normalcy I felt the night before has drained away, and my brain is back to its fuzzy functionality. “What is your daughter’s birth date?” the receptionist asks me, and I pause for an embarrassingly long time. You know this, I tell myself, and I know that this is true—I can feel when Emi’s birthday is, I can feel the feeling of what the words are that might contain that information, I have a sense of what the numbers would feel like to say out loud. It is there, somewhere, in my brain. But I can’t remember. I can’t say it out loud. It stays formless inside me, a mere suspicion, a hunch, while the receptionist repeats “Ma’am?” and I say, “Sorry, one moment,” stalling for time. I’m just about to ask my sister if she might remember when Emi’s birthday is, when I hear myself beginning to say “June?” And then I remember: “June 3, 1999, six-three-nine-nine.” I say it both ways, words and numbers, and somehow that unlocks the door to the other fact-based answers I must give—our address, a date and time that works for me to bring her in—and I am able to finish the phone call successfully. I remember to say goodbye. I remember to tap the red phone icon to hang up. After today, I think, as I get ready to go to the hospital, a conversation like this might be a thing of the past. After today, I might be better.

  But at the hospital, my hopes are dashed when Dr. Kranz returns, pulling up a chair beside the recliner where I, too, have returned, his baby-face forehead now creased with concern, and tells me he was not able to visualize the leak. I am in the 50 percent or so of people for whom the leak site is not observed on CT myelogram. It is all I can do to keep myself from crying. This is my worst-case scenario: that they are unable to find the leak and thus unable to treat me. That I will be like this forever.

  “Are there stronger tests, finer tests?” I ask, and he says, “Yes, we could do an MRI myelogram—although of those patients who go on to have that done, only 20 percent have a positive result or identifiable leak.” So that’s it, I think, it’s over, and I struggle to keep my face calm, my voice even, as I ask, “So now what?”

  “Now,” he says, surprising me, “we treat you.”

  Even though they can’t see the exact location of the leak, he tells me that in his experience, most patients with symptoms like mine are leaking from somewhere in their thoracic spine, the upper and middle back area that extends from the base of the neck to just a few inches below the shoulder blades. So what they’ll do today is patch me there—inject my own blood into the epidural space along my spine between my shoulder blades, and also several other places along my spine, so as to seal the dura, creating a kind of Band-Aid of blood to clot over any torn places. “If we knew exactly where the leak was, we’d do a more targeted patch, with a mixture of blood and fibrin—an insoluble protein that impedes blood flow—right in the leak spot. But since we don’t, we can patch more generally in that area, just using blood.”

  “So you can treat me,” I say, and he nods. “Even though you can’t find the leak.”

  He nods again. “I don’t have to see the leak to know that you’re leaking.”

  Again I am in the procedure room, again with the friendly nurses making jokes over my head. This time I am instructed to lie on my stomach, a blood pressure cuff on one arm, an IV in the other, so they’ll be able to access my IV for blood as the doctor needs it to inject into my back. This time I get a mixture of fentanyl and Versed (midazolam), and it feels like nothing. I don’t think it’s working at all, until I find myself struggling to get comfortable, facedown on the table, and hear myself saying too loudly that I wished there were some kind of hole for my face. “Does anyone know, is there, like, some kind of face-hole, does anyone have a hole I could put my face in?” I ask, and everyone laughs, and then to my amazement someone does indeed produce a hole I could put my face in: some kind of massage-table contraption thing one of the comedian nurses brings over and helps me settle my face into. I can’t stop laughing at the coincidence of my needing a face-hole and them happening to have one handy, and I realize as I’m slid into the CT scanner feet-first that the medication must be working.

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nbsp; They inject my back with lidocaine—lots of lidocaine. I’d warned them of my redheaded need for more pain medication, and yet it still surprises them that I’m able to feel things that by all accounts I should have been numbed to several injections before. But finally my back is anesthetized enough to allow the doctor to introduce needles into my spine without my feeling every part of it.

  Later, Dr. Kranz would show me a video of a straightforward procedure like mine, a series of still photos from the CT scanner strung together into a stop-motion movie, captured with a foot pedal he’d tapped while his hands busied themselves with the work of placing needles in such a way that they were able to deliver an injection of the patient’s own blood to the space around the spinal cord without piercing anything that shouldn’t be pierced. “This is the spinal column, like a stack of marshmallows,” he indicated, pointing to a row of white blobs on the screen. In the next frame, a close-up of the spine at the location of a suspected leak, he pointed out a bony arch with little gaps in it. “Those gaps are where we want to go,” ideally poking the needle into a gray area just above where the CSF and spinal cord are contained by the dura. Then a flash of white appeared on-screen: contrast dye, to visualize where the blood would be injected, to make sure it would be going into the place it’s supposed to go, coating the dura rather than being injected directly into the spinal fluid. After that, the blood was injected, and the stop-motion movie captured the way it spread along and around the dura, sealing it up with blood that would, eventually, clot and plug up any holes.

  This was something I would see only later, though, long after my procedure was done. From my vantage point during the procedure, with my face in the face-hole, I have only a vague sense of what’s happening at the moment, which, thanks to the fentanyl and Versed, is fine with me. I lie facedown on the table, halfway in the CT scanner, my face in the face-hole, one arm up near my left ear with a blood pressure cuff squeezing it every few minutes, the other arm up near my right ear with an IV in it for delivering the pain meds and accessing my vein for blood to use in the blood patch. Dr. Kranz explains what he’s doing as he does it, and tells me each time he places a needle. I’m alert enough to hear the difference in his tone when he’s speaking to me versus speaking to the nurses and physician assistant, when he’s noting something for my benefit or noting something for theirs. I can’t feel the needles, but each time, once they’re in and he begins injecting the blood, I feel the familiar nerve-twinging sensation of pressure building in my spine, and again have to answer the question of how much pressure is too much. It’s impossible to know. It’s an uncomfortable feeling, a feeling of wrongness, that something is absolutely not right, and so immediately I want to say “too much,” but then I worry that my “too much” might still be not enough, so I try to wait until the last possible moment of feeling that kind of twangy, jangly, reflexy feeling, like when the doctor has you dangle your leg and hits just below your kneecap to induce a kick, except that it’s that feeling on the inside of your back, along your spine, between your shoulder blades, and then between your lower ribs, and then between your kidneys, and then between your hips.

  Eventually I say “too much” in each spot, and I hear the doctor note for himself and his assistants and for me, too, how my blood is spreading, how he can see it coating the dura well in each of the areas he’s injected. And then, miraculously, it’s over: My blood has been injected in the right places, has spread the way he needs it to spread. Now my back is swabbed with something cold, the blood pressure cuff removed, the face-hole returned to its mysterious hiding place. The doctor says all has gone well, that he’ll check in with me in recovery in a bit. Nurses help me roll over to lie on my back, move me to a gurney that transports me to a recovery room. Everything is ceiling and upside-down faces for a while as I float in my fentanyl haze.

  Later I would read the medical account of the procedure, accessible through the patient portal online. It’s how I discovered my extra, rudimentary set of ribs.

  The patient was placed in the prone position on the CT table, and a scout image was obtained for localization purposes. The patient’s IV was accessed, and 5 mL of blood was wasted. Additional blood was collected in multiple syringes under sterile fashion. Interlaminar epidural blood patches were placed using CT fluoroscopic guidance and 3.5” 22-gauge spinal needles at the levels listed below. Prior to each injection, a small amount of Isovue-M 200 contrast was injected to confirm epidural, extravascular location. Note that there is transitional anatomy, with 13 pairs of ribs, with the inferior most level representing rudimentary ribs. For the purposes of this dictation, the level of the rudimentary ribs will be designated as L1.

  T9-10 (left posterior oblique interlaminar approach, 4 mL autologous blood injected)

  L1-2 (left posterior oblique interlaminar approach, 8 mL autologous blood injected)

  T4-5 (left posterior oblique interlaminar approach, 3 mL autologous blood injected)

  L4-5 (left posterior oblique interlaminar approach, 5 mL autologous blood injected)

  The needles were removed. The patient tolerated the procedure well without complication. She was taken to the recovery room in good condition.

  Estimated blood loss: Negligible. Patient was given contact information and instructions for follow-up.

  Impression: Successful epidural blood patches at a total of 4 levels in the thoracic and lumbar spine, as above.

  My version of the story has a face-hole and anxiety and nerve-twinging pressure. The medical notes version has clinical language, secret ribs, and exact anatomical locations.

  Both of these stories are true.

  PART FIVE

  Rebound

  28

  In the hospital, I lie flat on a bed in the recovery area. I’m given crackers, a drink. I talk with my sister, groggy, in a haze, from drugs this time rather than the normal haze of my leaky brain. Dr. Kranz comes in and leans over me, talking about the procedure he just performed, talking about my prognosis, about restrictions on lifting, bending, walking, sex.

  I may experience an increase in intracranial pressure, he tells me. My body has been overproducing cerebrospinal fluid to compensate for the leak; now that the leak has been patched—for the moment, at least—it may take some time for my body to realize it, to lower production to more normal levels. This may cause what’s called rebound intracranial hypertension: too much cerebrospinal fluid instead of too little. This usually takes the form of a headache in the front of the head, and may also be accompanied by blurry vision, nausea, vomiting. I think back to the way I felt after my first blood patch, the way my head felt like it might explode, the headaches all over the front of my face. I have been through this before. He tells me that I should try to avoid lying completely flat, try to prop my pillows up to give myself about a thirty-degree slope to lie on—not sitting up, which can stress the dura, and not lying down, which can increase my intracranial pressure; but rather some sweet spot in between. This will help with the rebound headaches, he tells me.

  He writes me a prescription for pain medication, and for something to treat nausea, and for something called Diamox, but he folds that paper in half before he gives it to me. “Do not fill this prescription without talking to me first,” he says. “This is for ‘in case of emergency.’” He will call me tomorrow and the next day to check in; if my rebound symptoms are unbearable, we will consider the Diamox—but he’d rather avoid it, if we can. Diamox, also known as acetazolamide, is a diuretic, which can help with the excess fluid; but it’s a serious medication that decreases CSF production and has its own unpleasant side effects. He’d like to see if we can give my body a chance to adapt and readjust on its own before we take that route. And since only my own blood was used in the patching of my dura, and not fibrin sealant or some other biologically based glue, the overall patch itself is a little flexible, and thus may more easily weather the flux of increased fluid. The other option in the case of rebound intracranial hypertension, he tells me, besides
just time and waiting things out or taking Diamox, is coming back to the hospital and having my cerebrospinal fluid drained a little, to relieve the pressure. “Let’s go with the healing powers of the passage of time,” I say, and he agrees that that’s a good conservative approach to start with.

  “So, what now?” I ask, and he understands I mean to ask the question in the larger sense.

  “Now?” he says. “Now we wait.”

  It may take two months for me to fully heal from the procedure I’ve just had, and then another two to three months to tell whether or not I might still be leaking. Even with the patching, I could have a very slow, subtle leak, whose symptoms could very easily be confused with the kind of symptoms that are normal during recovery—headaches that get worse as the day goes on, stamina that fades, the need to lie down, pain that improves upon lying down. I could develop a new leak, if my cerebrospinal fluid pressure doesn’t settle, if the patch on my torn dura isn’t able to keep it shut during the surge. It’s just going to take time to know what’s happening, whether I’m healing or still leaking, and he tells me it’s not unusual for patients to return two, three, even five or six times, for repeat procedures.