Have your headache symptoms or location changed?
_____Yes _____No
This is also difficult to answer. Since the blood patch a few months ago, things have changed. Instead of the pain mostly being centered on the right side, it’s sometimes on the left now, too; and I have the scrapey-head headache now, that’s new. And of course right after the blood patch, I spent weeks feeling as though my head was about to explode, that was a change in symptoms. Too much pressure instead of not enough, like the worst cold or sinus infection, my head as tight as a balloon, ready to pop. But were those symptoms, really? That all seems like a reaction to the blood patch procedure rather than something new, or something diagnostically meaningful. I circle Yes and write in: “Changes in location and quality since blood patch.”
Are you able to work?
_____Yes _____No. If no, please explain why
There is another inch-long line for the explanation. I stare at this question for a while. I circle No, obviously, but I’m at a loss as to what I can possibly say to explain my answer. It seems like it should be self-evident. It feels humiliating to have to answer. I feel anxious even acknowledging the question. Finally, I write: “Because I can’t think.” I don’t really know what else to say.
When I meet with the neurologist, all the prescreen hurdles conquered, I hand her the questionnaire and she tucks it away with other papers on her desk. I tell her my history: the flu, the cough, the MRIs, the attempts at bed rest and medication, the CT scan that showed I had a broken neck that has nothing to do with the leak, the way the doctors thought the leak might be somewhere in my ethmoid sinus but maybe not, the canceled through-the-face surgery with the ENT, the barbaric blood patch; the way my head threatened to explode after, the way I had more upright time after, the way I was able to do a little bit more but still felt so foggy, still felt so much pain, still got worse as the day went on, still couldn’t be upright for too long at a time. I tell her about the pain, about the drunk feeling, the way it feels like the thinking part of my brain is turned off and I’m just on autopilot, talking too much, just like when I’m tipsy, moving and speaking without thinking; the way it feels as though the part of my brain that’s in charge is the part that can ramble, fake, simulate, literally go through the motions. She listens to me and calls in another neurologist, and I go over it all again as they look at my chart, scan the questionnaire, thumb through my records.
What they tell me is that it sounds like I am definitely still leaking. That the blood patch might have helped, but not enough, because it wasn’t high enough on my spine, and so it can only do so much to create a kind of temporary roadblock, a constricting place that forces the cerebrospinal fluid upward a little bit. These neurologists aren’t confused by my symptoms; the recitation of my history isn’t met with immediate skepticism and doubt. They have encountered spinal CSF leaks before in their practice, and have experience in treating at least the symptoms. They recommend another round of MRIs; a round of steroids; a series of infusion treatments, a bolus of fluids and pain medications to bust through that secondary brain-scraping headache; if necessary, another blood patch. “But can you fix the leak?” I ask, and they say they can’t. They don’t know where it is, and even if they had the diagnostic machines and experience to find it, they still wouldn’t be able to patch it shut. They don’t have doctors here with the training to be able to do that. There are places that do, out-of-state hospitals I could travel to if necessary. “But this is the next step,” they tell me. “It’s still possible for the leak to resolve itself, and these treatments will offer some relief while we wait and see if that happens.”
Wait and see, wait and see, always more waiting and seeing. The waiting seems impossible. But it feels good, a little bit, to be seen.
19
October 2015
More MRIs showing nothing. More CT scans showing nothing. I remember when I felt relieved, at first, that there was nothing, that no one was calling to tell me the scans had bloomed with tumors flowering throughout my brain. But now, after so many months, my unremarkable brain scans feel accusatory. Almost taunting. I haven’t read the literature at this point, I don’t know that it is common for someone with a spinal CSF leak to have nothing show up on an MRI, and so my non-results feel like yet more evidence pointing to this whole thing as mere malingering. Perhaps this is all imagined, this pain. Perhaps I feel compelled to seek out attention from doctors because I am divorcing a doctor. This is ridiculous, of course: but it’s what I imagine my medical notes must look like at this point. Indictments.
I’m on a course of dexamethasone steroids, and mostly what they’re doing is keeping my thoughts in motion. I now have impulse, energy, but still no clear
