When the physician assistant comes in, he says, “No no, don’t sit up,” and finds a way to hover over me in a non-looming, non-awkward manner, and asks me all the same questions I’ve been asked for months and months now. Except this time, as I answer, he nods his head in recognition, and he doesn’t look at me with skepticism, and he seems to accept everything I say as utterly normal and not surprising in the least, and instead of this coming off as his being unimpressed I see he is merely recognizing that all of these things that I’m describing, which appeared so exotic and nonsensical and difficult to believe to the other medical professionals I’ve seen, are the same symptoms described to him by literally every patient who comes here.
“So this is normal,” I say, and he says, “We see it all the time.” And when I ask why it’s so invisible to all these other doctors—doctors at important places, world-renowned centers of academia, hospitals with peerless research facilities—he explains that this is like a sub-specialty of a sub-specialty of a sub-specialty, and that even when papers are published about it, those journals go to generalists who first of all may not ever read the journals (I nod my head, remembering the unread towers of the American Journal of Ophthalmology that became a part of the furniture when Gil and I were married), and second of all may only have time to even skim just the most important articles in their own field, and so they’ll never read about this, and probably only rarely encounter it, if ever. And so the things that seem normal to everyone in this place are strange and unfamiliar to nearly everyone outside it—and, because these things are patient-reported symptoms, eminently doubtable. “We could publish the cure for cancer in there,” he says, “and nobody would know about it.”
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
