[Context: I have a condition called muscular dystonia. This post is mostly for people who know me, and would care. For the rest, I will post my specifics soon. In the meantime, this is a general description.]
5th 16th 30th I go under the drill. [10/6 clarification: it’s been postponed twice.] Two holes, two wires, deep into my brain. Thus the name: deep brain stimulation, or DBS. Then a second surgery the 24th 7th of November, to implant and connect pacemaker devices–stimulators that will send a microcurrent into said brain, specifically, my globus pallidii.
It’s a big step, and like the other two, a long time coming:
- I’ve tried all the drugs, and none of them add more than the side effects subtract;
- I’m getting older, I’ve been walking funny a long time now, and my right knee and hip are starting to suffer. It’s not bad. Yet. I can see the direction it’s going;
- I’ve considered brain surgery before–when I was a kid, they would lesion your thalamus with liquid nitrogen. Maybe it helped, maybe not. Maybe you lost the ability to speak. Primitive operations with advanced technology. They still don’t quite know what they’re doing, but they know a whole lot more than they used to. The comparative sense is reassuring, whether that makes sense or not;
- The risks are low. I’m in good health: when I saw Dr. Bakay, my blood pressure was 100/58. It’s even reversible, and you can turn it off if it messes you up;
- Dr Verhagen, the movement disorder specialist, and Dr Bakay, the neurosurgeon, seem highly confident they can do me some good. Dr Shannon, my regular MDS, says I’m a good candidate–people with my profile do well with DBS;
- I have the necessary employment factors: full insurance, and supportive management;
- I’m a person who has been skydiving, bungee jumping… just got back from Burning Man, excited to go next year… not that none of that scared me, or that I’m unfamiliar with the paralysis of fear, but some of it is my personality;
- I’ve found a couple helpful online communities–DBSforDystonia@yahoogroups.com is a great bunch, lots of folks who’ve been through the exact same thing I’m doing.
- I’ve tried for a long time to rationalize my fears–not so much to eliminate them, but to move my sense of fear beyond the instinctive response. It’s an educational process, including object lessons (skydiving) and also meditative practice. I suppose it’s been a somewhat coincidental process, but it’s helped me prepare for this moment.
Overall, the technology has improved (slowly) and my dystonia has worsened (slowly) and I’ve aged (slowly) and the lines are converging at a point where it makes sense to do this.
These are my two biggest concerns:
- There’s a good chance it will help, and a not so small chance it won’t. I do have some of the best doctors in the world. But no one’s batting a thousand.
- There is maintenance for this system. It requires new batteries every couple years. Yes, minor surgery, they open you up, pop out old batteries, and pop in new, all outpatient. Given my general pessimism about the state of the world, I can imagine a lot of scenarios where that replacement could be hard to obtain. That whole hell in a handbasket thing could make this more difficult. But this could help too. It’s certainly lower maintenance than botox.
I have other concerns, but they’re all pretty minor. The surgery is, well, riskier than skydiving, but safer than getting hit by a car, and I’ve done both more than once. The total statistical risk of death is one percent, and most of that is for patients older and sicker than I. And there are increased risks around infection. And electromagnetic fields–no MRI around my stimulators. I wonder what EMP would do.
It doesn’t sound like fun, but at least it’s interesting: you stay awake while they implant the wires, so they can ask questions while they poke around.
It’s actually an interesting procedure:
- You arrive at about 5 am. They mount a frame on your skull, under local anesthetic, which they will screw to the table during surgery. This keeps you from moving, and gives the doctors a frame of reference while they’re poking around in there;
- They MRI you, with the frame on. That way the frame’s position is in the data with the rest of your brain data;
- They evaluate where they should put the wires;
- They dump the MRI data to a program that plots a range of safe paths through your brain. They mostly want to avoid sticking an artery. Which is good, because I wasn’t planning on a stroke at this point;
- They bolt you to the operating table, give you more local anesthetic, drill a hole in your head (bzzzzzzz! Yes, while you’re awake) and start poking around on one side. They’ll start with the right side of my brain, since the left side of my body is most afflicted–that whole opposite side brain control thing;
- First they go in with a test electrode, zapping around (in a very specific area) to see if they get a good response in relevant parts of the body;
- When they figure out a responsive spot, they put in the permanent electrodes, mount them to your skull (don’t want those buggers to move), and close you up;
- If all went well, they repeat on the other side;
- You spend the night in the ICU, and in the morning you go home.
Then, the following Wednesday, they implant the stimulators. They put them under your collarbone, and they run wires under your skin up your neck behind your ears, to the top of your head, where they connect with the wires in your brain. It’s supposed to be the more physically traumatic procedure.
That, of course, is just the beginning. After you’re a little better, they start programming the stimulators. Which takes six months to two years of experimentation. And lots of ups and downs–a setting helps, then some of the improvement goes away, then they make a new adjustment. It sounds like a long ‘three steps forward, two steps back’ process.
But it also sounds really promising. I’m kind of excited.
Updates will be posted here as events progress.