My apologies, but this post has to begin with a sermon cum apology: Modern medicine has truly worked wonders. Our life expectancy is vastly improved over what it was 150 years ago, and we have an excellent chance of most of those being pretty good years. I, for one, am particularly grateful for our improved understanding of diabetes. I was diagnosed with Type 2 diabetes almost ten years ago, and yet I am in pretty reasonable shape today. A century and a half ago, my life expectancy would have been about two years, and it would have been a pretty hard way to go. My own father, who passed away 36 years ago this month, had his life extended for over two decades in spite of Type 2 diabetes, though it ended up being a pretty hard way for him to go in the end.
I begin with that little sermon because the rest of this post may come across as a bit … cynical. And this is another potential TMI post; apologies to those of you who do not know me personally and come here for the geologic formations or the protozoa.
Kind of to recap: The Tuesday before last Christmas, I bent over to pick something up in my office and felt a stabbing pain in my head. Bending back up relieved the sharp pain but left me with a very mild dull headache. This pattern continued for the next three days, I consulted Dr. Google, and I was concerned enough to drop by urgent care. One does not trifle with a debilitating brain aneurysm.
(I’d have posted that classic cartoon directly, but it’s a $35 licensing fee plus $10 processing fee. Yes, I try to respect copyright.)
The doc at urgent care more or less shrugged, gave me a shot of super-Ibuprofen, some more super-Ibuprofen pills, and told me to come back it the headache persisted.
It seemed to help. Over Christmas break, I felt just the mildest of headaches, barely enough to register, until I bent over to pick up something heavy or coughed or otherwise strained. Even that became a bit less bothersome with time, though part of it was simply being a little more careful about how I lifted things, coughed, or strained. I took to using a somewhat smaller bucket to change water in my aquariums and to filling it at the kitchen sink where I didn’t have to bend over to pick it up. I could still do my daily walks and occasional hikes.
But the headaches didn’t stop, and I continued to be worried. I saw the physician’s assistant at my usual practice (the best way to get in quickly) and she was concerned enough to suggest an MRI. We negotiated and I tried seeing what drinking more fluids would do. It did help, a lot, but the headaches still weren’t completely going away.
Next move was to visit the ENT clinic where my friend, Steve Harris, works. I saw a nurse practitioner (again, fastest way to get in) who allowed as how this seemed a little like a sinus headache, but not really, but she’d give me some antibiotics to try, and swab my nose to see what was growing there. Meanwhile I had thrown my back out something awful, and I had a bad toothache; in retrospect, there’s no connection, but the human mind connects things instinctively. Seeing patterns is how our distant ancestors spotted the big cat in the grass, and false positives were less lethal than false negatives.
The antibiotic killed the pain in the tooth right good, but I still had the very mild headache that just wouldn’t go away. And the nasal swab showed no infection.
All right. Next step was to go ahead and get the MRI. I got my head jammed in a plastic bucket and run through the MRI machine in Santa Fe. Then I did some shopping and hiking and headed home. The report was already in my email. There were three abnormalities. I Googled some more, and concluded two were “incidental” (not actually causing me a problem) while the third pointed to intercranial hypotension. I looked that up and found the symptoms matched. I am leaking cerebrospinal fluid somewhere. It wasn’t likely to kill me but it could become debilitating.
My PA at my regular practice referred me to a neurologist in Espanola. We talked, he looked at the images, he tested some reflexes, and he didn’t terribly like what he saw, but confirmed the diagnosis: CSF leak. I was referred to a neurosurgeon at UNMH in Albuquerque. This was about the time the coronavirus hit, and everything stayed in slow motion as a result.
Meanwhile I got a root canal on the painful tooth; the endodontist announced that the tooth was completely dead, with the pulp entirely rotted out, but could nonetheless be saved. It’s still bothering me, though; it’s the job of your local dentist to finish up the chewing surface, that couldn’t be done because of coronavirus, and the tooth still aches some. I’m on antibiotics to try to finally clear that up and I have a few months to get the finish put on. And the back I threw out is mostly feeling tons better.
I saw the neurosurgeon at the end of March. He again confirmed the diagnosis of a CSF leak, and set me up for very thorough imaging with MRI and CT and a lumbar puncture to inject dye. It was unpleasant in the way a root canal is unpleasant: The actual pain mostly comes from the preliminary injections to stop the pain (modern medicine is often ironic that way) and from being in an unnatural position for a prolonged time.
I was supposed to get a call a week later to discuss the imaging. The neurosurgeon had a couple of emergencies come in and was unable to make the call, so I ended up hearing from scheduling before I actually heard from the neurosurgeon. They scheduled me for more imaging followed by a “blood patch.” This is where they inject a couple of tablespoons of your own blood into the spine so they form a patch over the surface of the dura mater where you’re presumably leaking CSF fluid.
I had noticed a bit of congestion in my nose and an odd taste in my mouth after the dye injection; I figured that meant a leak at the base of my skull, which was going to be … difficult. When I was scheduled for a blood patch, I decided I was imagining things and assumed they’d found a definite leak somewhere along my spine.
The neurosurgeon finally was able to call me two days later. He said there were indications of leaks in my lower spine and perhaps in my neck. This did not sound promising. The neck is hard to patch. But he thought the worst of it was probably in my lower spine and that might be enough.
So last Friday I went down for the patch. Turns out just after we left, they had two emergency cases come in, but they couldn’t get ahold of us and I arrived to find I’d been postponed two hours. Did I want to reschedule? Not at this point; let’s get it over with.
So I waited for an hour, then got wheeled into a bay to prepare and wait some more. Preparing meant stripping way down and getting an IV put in. They fussed over this; it had to be able to both put stuff in and take blood out (for the patch) and they worked it a bit before being satisfied. Oddly, I am not now looking at a huge bruise in my elbow; I thank the nurses’s skill. I should say now that everyone involve was very good.
I finally got wheeled into the fluoroscopy room for another lumbar puncture for a final dye injection. These are just not pleasant. The preliminary injections hurt significantly, and they don’t quite kill the deep pain of the needle going into your spine; it’s a fairly mild pain, but deep, and it’s just not fun.
They took some pictures, announced that there was not a fast leak and this was good, but they’d proceed with the blood patch to patch up what looked like indications of slow leakage. I got wheeled into the CT room for this. More lidocaine jabs in the back; needles inserted deep into my spine; periodic pauses while the CT checked the positioning. All this time my face is jammed into a pillow, giving me a ferocious crick in the neck, and my arms are stretched out overhead, which is making my shoulders hurt ferociously. (My shoulders are not in good shape.) No sedative because they prefer me alert for instructions; I’m actually fine with that. I don’t react well to sedatives.
Three needles into my back and three injections of my own blood, as far as I could tell. And my headache disappears.
Alas, only briefly. This is not unknown. The compression of the spine from the blood patch raises pressure briefly, which relieves the symptoms of intracranial hypotension, regardless of whether anything is actually plugged up. By the time I was dressing and being wheeled out to my car, the headache was already back. I wasn’t sure what I should be expecting so I just went with the flow.
The rest of Friday, Saturday, and most of Sunday were spent as flat on my back as I could manage, to give the patch every chance of succeeding. Alas, when I stood to go to the bathroom, the dull headache was back. Today I’m taking an extra day off work, to rest up a bit more, and I’m feeling a bit better. The strained shoulders are doing better, the neck has less of a crick, my sore back is now just itchy (well, still a little sore) … and I have the usual real mild headache, which gets worse if I strain or bend over. If anything, it’s slightly worse than before the procedure.
The procedure failed.
The likelihood is that I have slow leaks somewhere else, probably my neck. Neck leaks are much riskier and harder to patch. Well, it was worth trying the easy thing, but after talking with the (disappointed) neurosurgeon, the decision is that I’ll try conservative care and we’ll see where we stand in a few months. Slow leaks sometimes heal up on their own.
So after four months and I-don’t-want-to-think-about-how-many-thousands in medical bills (fortunately, I have excellent insurance), the bottom line is: Drink plenty of fluids, take caffeine, and avoid doing things that make my head hurt.