4 Brutal Realities Of Treating Chronic Pain

Amanda has a genetic neuromuscular disorder called Charcot-Marie-Tooth disease. In science speak, her myelin sheaths are degrading. Think of it this way: Your nerves are a bunch of wires running through your body carrying electrical impulses. The rest of your body is wet and salty, kind of like the ocean. If you want to send a signal through a wire that is encased in salt water, you need to insulate that wire. Myelin sheaths are what insulate nerve fibers. They're important.

CTBTO Preparatory Commission
Much like the insulation on these undersea fiber cables that help keep the furry porn regularly flowing to your home.

Therefore, Amanda appears to be fine on the surface, but lives with intense, chronic pain due to this microscopic defect.

Quasar Jarosz
Not labeled: the part of the myelin sheath that's a rotten son of a bitch.

"I'm on five different pain meds," she says. "One of them is an opiate, and if I took it I wouldn't be able to get out of bed. I usually choose going to work and skipping the meds, and that means I have to be at work in pain." See, that's the thing; drugs are great when you have a wound and you need to stop screaming for a few days while it heals. But when you've got a condition that leaves you in pain all the goddamned time, you realize how blunt a tool drugs are. There's actually no evidence that conventional painkillers provide long-term relief from chronic pain.

This is where you have to take the cyborg route. Amanda's is kind of a less bloody RoboCop situation, and she must use the power of technology to shoot her pain out of a high-rise window.

Violet ray machines were originally invented by Internet hero Nikola Tesla. The idea was to deliver high-voltage, high-frequency, low-current electricity for therapeutic reasons. Since this was around the 1900s, violet rays were used to treat pretty much whatever, because electricity seemed like magic and they figured there was nothing it couldn't fix. Modern doctors took the electricity-as-medicine idea, refined it, and came up with this thing:

Yeza/Wiki Commons
Aw, science, can't you make something that glows?

That's not what Amanda has -- that's a much less scary version, with patches that you stick on your skin that deliver little jolts of electricity. That's not always enough, since it's just applying electrotherapy over the general affected area. For some patients, the electrotherapy needs to be applied directly to the nerve itself, and that's where spinal cord stimulator implants come in. Amanda named hers Jarvis, presumably because she never saw Spider-Man 2.

SCS implants have been a thing since the 1980s, and they merely look like a couple of robot worms have burrowed into your spine. No big deal:

Mconnell/Wiki Commons
No big deal until you have to explain to TSA why your body is full of wires and Atari graphics, that is.

The main risk is getting paralyzed during the insertion procedure. Amanda knew this, so she did her research beforehand. ("If the doctor hasn't done many, it's easy for things to go wrong.") Roughly 3.8 per 1,000 patients walk (or, rather, roll) away from the procedure with some amount of paralysis. A lot of those people wind up recovering within a few years, but "a few years" of partial paralysis is "a few years" more than anyone wants to live through. And even if everything goes perfectly, not everyone sees any benefit; 50 to 60 percent of patients experience relief with SCS implants. It's a big decision, in other words, which is why ...

So, step one is to get a psych screening (see, this is the step RoboCop never got -- it would have made his whole transition so much smoother). It's also important for the doctors to know if you're the sort of person who can handle having a bunch of electronics permanently grafted inside you. Amanda once heard a story of someone getting an implant and then hating it and immediately demanding it be taken out. We can't all be Tony Stark.

Marvel Studios
Alas.

So, there was a mandatory counseling session that mostly seemed to involve the therapist talking to Amanda to make sure she seemed stable and wasn't going to let her machine parts turn her to the dark side like Darth Vader. Once Amanda was all screened and approved, it was time to get down to the shiny chrome realities of her new cyborg life ...

First she started with a trial device. It's important to do a trial run before getting a permanent implant, because not everyone can handle having a tiny machine zapping her spine, for some reason. The trial surgery is a simple matter -- they just have to stab this electrical shit into your spine, and they can't put you under beforehand. "The trial surgery is really strange because you have to be semi-awake. It's a lot like getting an epidural several times because they put in more than one lead."

The doctors need you awake so they can find the right spot to put the implant. Amanda has hers in her lower back because the pain is mainly in her legs. The implants can be put higher up, even in the neck, if that's where it hurts.

Via Louisianapain.com
You know it works because it glows.

After that, well, there are a couple of things to watch out for. "It's really awkward during the trial, because you can't get wet because you could get electrocuted. I live in Florida, and we just had monsoons, and I had my trial during torrential downpours."

But rain is far from the weirdest danger:

"I was on the way home in the car, and I sneezed, and I felt like my whole body was vibrating. Another time I was sleeping and rolled over, and that put pressure on the device against my spine, and I felt like my legs had fallen off. ... I wasn't sure if my body was still there, so I had to reach down and make sure my legs were still there. There's a very bizarre disconnect for a while. When you first get it, and during the whole trial, if you move the slightest bit strangely, your legs will go crazy." When it's working properly, she says, "the best way I can explain it is it feels like a cellphone vibrating in your legs."

Medtronic
Which still sounds obnoxious, but soundly beats the shit out of life-altering pain.

After the trial, the permanent one is inserted during general anesthesia, but they pull out the first implant while you're awake. "It feels like a very long IV being taken out." The permanent one comes with a remote -- you have to keep it with you at all times to make adjustments. You're also meant to turn it off while driving or operating heavy machinery. The remote has two parts: a disk you put over the device implant, and a thing with buttons that lets you choose programs. You can even set it to pulse.

So ... does it actually work?

Via Louisianapain.com
"I. Glow."

Well, an SCS implant isn't considered a complete cure: It's a success if it decreases your pain by 50 percent or more, and it doesn't work on everyone. But for Amanda, the implant made the pain go away from the moment she woke up after surgery. "For the first 24 hours, I was giddy. Pretty much laughing hysterically. You wake up from the surgery, and you feel it working. Very strange to wake up and not be in so much pain after you've gotten so used to it being there all the time."

If you're curious, studies show that the implants do nothing at all for about 20 percent of patients. For the rest, though, most of them get at least some relief, and still get it years later. The ones who get great results from the start usually can expect to keep getting relief long term. That means Amanda's huge, initial dose of pain relief bodes well for her future, assuming the implant doesn't become sentient and turn into a Doctor Octopus situation. So far, so good. Or in Amanda's words, "This is awesome."

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