I'm kind of stunned and kind of amused. I mean, the procedure was a BEAR. It was so painful and then the recovery, as the nerves flared up like crazy before their presumed death, was just nuts. I only went through all of that because I thought it would work!
I feel like I've been in a crazy-intense romantic relationship that had all the possibilities in the world, and then it just fizzled into nothing. So now I'm back on the market, looking for another option, sad and beaten and still hopeful.
For the last three weeks I've been seeing this married couple, chiropractors who also practice various physical therapy modes. The wife is doing neurokinetic therapy with me. "NeuroKinetic Therapy is based on the premise that when an injury has occurred, certain muscles shut down or become inhibited, forcing other muscles to become overworked. This compensation pattern can create pain or tightness. By applying light pressure that the client then resists, the practitioner can evaluate the strength or weakness of each muscle, revealing the sources of injury and retraining the client’s body to remove the compensation patterns—reprogramming the body at the neural level" (from Neurokinetic Therapy: An Innovative Approach to Manual Muscle Testing by David Weinstock).
For the first week, it was fantastic. I had several pain-free days in a row. I thought this had to be the solution. And so simple! But then it stopped working. I've had this happen so many times. Often the first time I try something-- cortisone shots, Botox, myofascial release, kineso taping-- I enjoy fantastic success. But then it never works again. Doctors and practitioners tell me this happens sometimes, that the body initially reacts to something new and then goes back to it's old habit.
I'm going to keep seeing this couple, but I'm quickly losing hope that the new exercises or anything else they can do with me will work.
As for my spine doctor, he recently prescribed this crazy compounding pain cream, chock-full of three muscle relaxers, bupivacaine, lidocaine, clonidine, ketamine, and a half-dozen other heavy hitters. The idea is that by applying it topically, you'll get the benefits of each medication without the full-body side effects that you'd get with pills. It doesn't do jack.
I called a week after he gave it to me, a bit despairing, he suggested I get another MRI on my neck and also see a neurologist at Jefferson. I reminded him that I'd already been to Jefferson, and they sent me back to him. He was sorry to have forgotten.
So where does this leave me? Without immediate prospects, that's where. So much of this journey has been about "the next thing." When the headaches are at their worst, I lie around researching doctors/articles/practitioners, and I get really pumped when I find something promising. Right now, I have nothing. There's no reason the nerve ablation (aka rhizotomy) didn't work. As I wrote before, when my doctor sent electrical currents to the nerve endings to test them before he burned them, they lit up perfectly, recreating the pain pattern like mad. And then they were so damned angry after he burned them, the searing pain like no headache I've ever had. They were supposed to be dying. They are still alive. It doesn't make sense.
I'm trying not to get discouraged. I take medication every day and while it works somewhat, keeping the pain down so I can teach and not be too cranky, so I can be quasi-social, it's not a solution. I'm walking around with medicine bottles in my purse, logging in every twinge of pain, timing each dose so I stay ahead of the pain. The magic trick is half a Zanaflex and half a Percocet. I don't feel side effects from that dose of either, and I'm mostly pain free for about two hours. But it's ridiculous to take medication like that every day, and it doesn't always work. Today I waited too long, and I've been screwed ever since. I came home from teaching in pain, took more Zanaflex and slept three hours.
The waiting too long to medicate thing is weird. I think, at heart, I am a ridiculous optimist. When I get the first twinges of pain, I think it won't get worse (despite nearly three years of evidence to the contrary). When I take pills at this point, I feel like a faker. I feel like I'm exaggerating. But if I take them, the tinge of pain goes away and I feel pretty much pain-free. But if I decide not to be a "faker" and ride it out, the headache gets worse and worse, until it's the only thing I can see in front of me. At that point, meds don't really work, unless I take enough Zanaflex to knock me out, which I did today when I got home.
And then there's the Percocet. It's a new addition to the repertoire since the nerve ablation. I find it enhances the pain-relieving ability of the Zanaflex and also weirdly makes it non-sedating. If you recall, at first I took half a Percocet after the procedure a few times and it worked. But when the nerves started actively "dying" (clearly they weren't, so what the hell were they doing?), I needed to take more and I couldn't handle it. It just made me feel like hell, dizzy, nauseous, the worst kind of seasick. Those were some mighty dark days.
Now I take a half once and maybe twice a day along with the Zanaflex and it's getting me through. But now I'm a sober person who takes a narcotic every day, and while it in no way gets me remotely high, it's still weird. I'm glad I can only take this small amount and that taking more makes me feel gross. It's like build-in abuse protection. I don't want to get high. But I know that medication can be insidious, and that many sober people before me have fallen to prescription pain meds. But I also know that many sober people have taken them successfully and not relapsed. I don't think they are going to be a problem for me, but this whole deal is also a reason why I hold off on medicating when a headaches starts. It's kinda fucked.
If I ran into you on the street right now and you asked me about my headaches, I'd probably lie and say I am fine. I don't have any new treatment to tell you about. I am not looking forward to anything right now. I'd put off the nerve ablation for so long, and it loomed before me as the great big hope for so long. Now that I've done it and it's failed, like Gatsby's green light, my "count of enchanted objects had diminished by one." Very corny, I know, but the sentiment is true.
I worry that, at this point, it seems like I'm making all this up. Like for whatever reason, my psyche has manifested this pain. I've been assured by trained professionals that this isn't true. My headaches are real. But who goes on this long without a solution? Hundreds of people on the internet, apparently. Spine and neurology message boards are filled with tales just like mine, many worse. Some have been trying to fix their headaches for decades. Their messages end in a catalog of the medications and procedures they've tried over the years, their failures. Am I one of them now?
I'm going to get my MRI and keep doing my exercises. Maybe my doctor will see something new on my scans and suggest something else. I'm going to keep taking pills, as sucky as that is. And I'm going to work in my garden and ride my bike and revise this novel and camp at the beach and cook summer vegetables and do everything else I want to do this summer. As much as I can.
