I was scheduled to get a trial spinal cord stimulator implant this Friday. I've had serious misgivings about it, a sense it wasn't the right thing for my pain, along with a lot of fear about wires in my spinal column. I have occipital headaches caused by damage to my neck. My pain management doctor had wanted to try an occipital nerve stimulator, but my insurance wouldn't cover it. Recently my spine doctor's partner strongly suggested I try a spinal cord stim instead. He said running the leads across the nerves coming from my neck would block the pain to my head.
But today I had an appointment with a neurosurgeon at Jefferson who was recommended to me by yet another doctor. He's done a zillion of both types of stims. He said the spinal cord stim would be waste of time for my kind of head pain, and he's nearly positive his staff can wrangle my insurance to cover the occipital stim, which he says is really the only way to go.
Here's a short news story about how the thing works. The girl has migraines, not occipital neuralgia like I have, but it's the same procedure.
He was one of those rock star docs who blows you away as soon as you meet him. He has a serious cv, major publication, teaches at Jefferson, does research, and has been in the stim game, among other things, for a long time. I was really psyched to meet him.
But some of the stuff he said was a bummer: my neck is super messed up, especially for someone so "young." He asked if I'd had an accident or some major trauma to my neck. I told him the only explanation I have is the Lyme disease that hung out in my neck for three months in 2001. There is no way to fix what's going on, just manage it. If the stim doesn't work, the only recourse is to keep taking pain meds and wait for technology to produce a better pain management technique (and he says there are a lot of exciting things under development).
I'm going to go ahead with the occipital trial on July 1. I feel a thousand times more comfortable with this than the spinal cord stim. It's still pretty gnarly, but I won't have wires running up my spinal column, and the leads will directly touch the nerves where I have this miserable pain.
Meanwhile, I had a solid week of greatly reduced pain after the trigger point injections I had last week. I'm going to get more aggressive ones in two weeks. I'd had a feeling that was going to work.
I think I'm learning that I have good instincts about all of this. The last procedures I dragged my feet over was my inpatient stay at Jefferson last summer. I almost cancelled a million times. I had actually scheduled it for early summer and backed out. And guess what? It failed, and it sucked while I was there.
But there's the idea that you really do have to try everything. Part of that is just common sense, and part of it is superstition, like I'll be punished and in pain forever if I leave a stone unturned. I confess that I STILL can't wrap my head around the idea that this can't be fixed, permanently. I had a tiny hope that this guy today would tell me about some procedure that I'd never heard of that would be the magical solution.
He asked me to fax over a timeline of all the procedures I've tried. He said it's good that insurance sees all the things I've failed. "And you," he said, "have failed EVERYTHING."
