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;
