September 2013 - ??
Around the time we were getting ready to move to North Carolina this summer, I found myself thinking "oh gosh. It's been a year and a half since my last bout started. I had a year and nine months between the onset of the first and the onset of the second. If it's going to happen again, it will probably be fairly soon. Shit." Then I refused to let myself think about it any more than that, partially because it did no good, and partially because I was fairly certain I would not be able to live through it again. I must have jinxed myself.
Come the middle of August, and I start feeling really strange, off, weird. I couldn't put my finger on it, but I knew something was going on inside my body and that whatever it was couldn't possibly be good. For a while, I was pretty sure I was about to crash head-first into a major depressive crash; I had most of my typical symptoms - overall fatigue, weaknesses, headaches. exhaustion, muscle tenderness, inability to concentrate on much. It didn't occur to me that it could be something else.
Flash forward about two weeks to the very end of August. I wake up one morning, and I know exactly what's wrong. Again. Oh god no. Right off the bat, the pain wasn't as intense is had been, but it was more than enough to keep me still in my bed from fear. Right. Time to find a neurologist down here that could / would perform ONBs for me. I futzed around online and found a multi-doctor practice in Winston-Salem that explicitly said they performed the procedures. I called them, and they set me up with Dr. Crowell, who could see me for an initial appointment the next day. He said he didn't perform the ONBs himself anymore, but other doctors in the practice did, so hang on while he went and pestered some of them. Off he went, and traipsed back about ten minutes later with Dr. Meyer, who did administer them, and who happens to me the most adorable older man with a wicked sense of humour. He did the ONB right then and there, and told me to come back as needed.
He was dead shocked when I phoned in about a week later, begging for another one. He said he's never heard of a patient needing ONBs with that short of a lapse between. Some patients are incredibly lucky; they can go months between injections. Not me, nope. And then another week later. On the third visit, Dr. Meyer suggested that maybe it was time to look at more serious, permanent options, as the cumulative effect of the steroids could cause long-term adrenal and kidney problems - and lord knows I don't need another problem to deal with, and certainly not a problem that could have been avoided in the first place.
Then I remembered there's a surgeon, Dr. Ducic, with the Peripheral Nerve Institute at Georgetown who pioneered nerve surgeries called nerve decompressions. What he does is go into the back of the head at the C2 vertebra - where all the spinal nerves are located - and cut away small slices of whatever tendons/muscles/ ligaments/blood vessels are strangling the inflamed and swollen nerve. This allows the nerve to still be inflamed and swollen as necessary, but gives it more space to do so. Dr. Ducic actually started out as a plastic surgeon, but it seems that field works perfectly for these kinds of nerve surgeries because plastic surgeons use the finest tools and work in the smallest layers of tissue for their work. The use of nerve decompression surgery for spinal nerves is quite new, however, less than ten years old; Dr. Ducic was the first, but even now there are only a handful of surgeons in the country that perform it. However, because Dr. Ducic is the closest practicing surgeon to me, and because he's the surgeon, we knew it would be hard to get in.
But we've filled in the application packet for a surgical consultation. For out-of-the-region patients, he'll do both the consult and the surgery on the same day, eliminating the need for multiple trips. It can take two, three, four months from when a patient submits their packet to their actual surgery, so I know it's going to take time. I can't take any of the powerful painkillers that are commonly prescribed for nerve pain - I mean I could, but I would have to stop my bipolar medications to start the pain medications, and that would be a bad life choice, but this is a bad life choice, too - so instead I"m on a serious anti-inflammatory for the next month or so, at least until we have a better idea of the timeline.
The other option to keep in mind for now is Botox. It's injected into the nerves, just like ONBs, but it lasts three to four months. I'm not convinced that Botox would work that long, especially since the ONBs don't last me nearly as long as they are 'supposed to' last. It is a possibility, however.
But with this round, there are a great deal more problems going on under the surface. Lots of things are going wrong, and I am completely confined to bed except for about two or three hours a week immediately after I've had my ONB. It isn't good.
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