In the waning days of pain. . .

Right this very second, I think I must be insane to go through with this surgery! I feel halfway decent, and I’m willingly letting a doctor cut me open and put THINGS inside me, permanently. In about 24 hours, I will be in surgical pain, with stables up the back of my head and in my back, a head I’m not supposed to turn until scar tissue forms, my classes covered by subs . . . and hopefully a great reduction in the grotesque nerve pain that’s been clouding my life for five years. Phew. Okay.

On Friday, I get my permanent neuro stimulator implanted. I had a trial in July where the wires went into the back of my head and the battery was taped to my back. It was stunning—a gentle tingling electrical current completely canceled the nerve pain. I kept it on all the time, and only the second to last day, when I left it off after I woke up and got some crazy searing pain did it fail. It seems once the pain is underway, the current is not great at shutting it off.

Since the trial, the pain has been unusually bad. My doctor says a lot of people say that and he thinks it’s the contrast of having pain-free days followed by the old pain back when the trail is removed. But I think it’s just worse—I think the wires from the trial probably agitated the nerves. Last month I ran out of pain meds a week early, which has never happened before (my awesome doctor refilled the prescription early). It’s been really hard to get it under control, and too often I’ve had to throw meds at it all day before I get any relief, and sometimes I don’t. I’m hoping that after the surgical pain subsides (I’ll have two pretty gnarly incisions where the wires go to my head and  where the battery is implanted in the “back fat,” which is the best way to describe where it will go). The battery is fairly large (this is a sample that my doctor gave me after the trial so I could tape it to various placed on my back and see where it best suits:

These last few days, I have so many feelings about all of this. When the pain is manageable, I think I must be crazy. I’m willingly letting a doctor cut me open and put all kinds of foreign material into my body. I’ll have an electrical current running most of my waking hours. I’ll have big nasty scars. The first time I read about neuro stimulators, I thought—damn! Now there’s a treatment of last resort! Well, yeah.

When the pain is bad, I am counting the hours. I know the recovery will be intense. I’ve got my classes covered all through next week, with the option of taking another week if I need to. My occipital nerve stim Facebook group has been great at letting me know what to expect: a lot of pain at both incision sites, as well as in the flesh where the wires are tunneled; the need to keep the neck from moving too much so that scar tissue can form around the wires (so no driving for several weeks); the possibility that the wires will move anyway (lead migration), and I’ll have to have “revision” surgery. The possibility that the relief I felt from the trial was a placebo effect and the permanent implant won’t work and will have to be removed eventually (my doctors says this happens to fully 1/3 of his patients). 

I found a video on youtube of a woman a month after she got the implant. She was in amazing shape. Then I found a video of her two years later, and she was a wreck. So this might not work. I have to be prepared for that. If it doesn't, my only real option right now, when nerve disorder treatment is still pretty un-evolved, is stronger narcotics. That doesn't make me happy at all. That Vicodin has been fairly effective with almost no side efffects had been great. I'm not sure what stronger meds would be like, and I don't want to find out.

I hate missing classes so early in the semester. In composition classes, I’m laying so much groundwork and students are practicing certain skills that need to be solid for the rest of the semester. But I reached out to a large group of friends in my department, and their willingness to cover for me was amazing. My students will be in great hands, and the lessons I’ve prepared for each day don’t require a lot of actual instructions from the subs.

I have tons of books to read, a new writing project, and a bunch of TV shows to binge-watch while I’m recovering. I have a stunningly good-natured husband who will be home with me the first three days, and is in complete support of the surgery and my well-being. I really hit the jackpot when I decided to get coffee with that guy. Still, I hate the feeling of not being physically normal and limited in any way. I can’t even wrap my head around not being able to jump into my car whenever I want. But if the stimulator works and at least lessens this crap garbage pain on a daily basis, these temporary discomforts will be worth it.

It struck me the other day that daily pain is a lot like drug addiction. It’s destabilizing, and takes up way too much time. It takes you out of the flow of life and into your own solipsistic word, distorting your perspective on just about everything. It’s exhausting, and horrifying, expensive, and demoralizing. At least with drugs, there’s a high to make it all seem worth it. There is no upside to pain.

I’ve changed so much in the last five years. One of my favorite things about getting older has been trusting my perceptions. I struggled with this a lot through my teens and twenties, sometimes to the point of deep depression and near madness. But into my thirties, I realized that my perceptions were solid, that I was sane and saw the world in a relatively measures and accurate way. It gave me confidence and made me feel safe as I lived my life, got serious about my profession, made decisions about relationships.

Pain has wiped a lot of that out. My physical perceptions are often nuts—lights are so bright, and so many sounds are nothing short of an assault. I avoid children because they screech and howl, and sometimes I judge them for it. Camping with my niece and nephew, I knew pain was getting close before I actually felt it because the kids would bellow. “You’re no fun when your head hurts,” my niece said when I told her to dial down her (objectively) nasty harangue of her little brother. Worse, I look askance at exuberance because if I get too close to loud, happy people, it will feel like daggers in the back of my head. But these aren’t so important, light and sound. What I worry the most is that I can no longer read people accurately.

Before I hit my head, I’d become someone who really loved people. After two depressive, self-involved decades where I was paranoid and easily irritated, by my mid-thirties, I was finally medicated for depression, had enough therapy to really know myself, and it turned out I was fairly extroverted after all. I ended up in a very social career, I had a lot of really amazing friends, and my relationships with my family members seemed on the mend.

Pain has turned that upside down. Now I’d consider myself an introvert, and the social aspect of teaching is the hardest when the pain is bad. I often can’t think straight, so I have a hard time making sense of some family and friend relationships, and some have ended. I no longer feel “right with the world.” I miss that. I want it back.

I’m banking on this surgery being successful. Yesterday I started to feel dread for the upcoming winter, and then I realized it might not be so bad, because I might not be in as much pain. In objective terms, I might have a good five extra hours each day, hours that are currently compromised with pain and/or medication. I might be in a good mood most of the time. I might enjoy spending time with people again. Yes. The surgery will be worth it.