by Shannon Dingle
“Are you turned on?” she asked me. “Oh, wait. I meant…”
I knew what my friend meant. No, we weren’t talking about sexual arousal; the topic of discussion was my battery-operated intermittent pulse generator (IPG). The small machine, approximately the size of a box of Tic Tac mints, lives about a centimeter below my skin’s surface. A thick wire I can feel through my skin connects the IPG to a couple of electrodes embedded in my spine, centered in between a couple of ribs connecting to my tenth and eleventh thoracic vertebrae. Those electrodes intermittently deliver electrical impulses to my spinal cord to bypass the pain-to-brain communication from a permanently damaged area of nerves in my back.
It does that if—and only if—it’s turned on. I use my remote control to check: first I turn it on and then I glance at how many bars of battery power I have left, confirming that program three is lit along with six bars of intensity. That’s the combination that relieves my constant pain.
“Don’t forget to charge up in the morning”
For starters, my body has a remote control. It’s my normal now, since I only had my device permanently implanted in mid-September 2018. My charger is new, too.
I have a charger on my body. I turn on the charging block and move the round blue pad on my hip around to the spot where the charger matches up to a rectangular box that sits a centimeter under my skin. To get the best charge, I try to make all three of the connectivity bars on the charging block light up. The bars look just like the ones on my mobile phone, telling me just how much service I have at any given moment.
Once the bars are glowing green, the two battery symbols show one, two, three, or four lights, depending on how much charge is present. If I’ve kept the charging block plugged into an outlet recently, like I should, the battery symbol on the left displays all four lights. The matching symbol on the right lets me know how much charge is remaining in my IPG’s battery.
I’m supposed to charge myself daily. If I did that, each charging session would only last about twenty minutes, long enough to recharge one of the four bars. Maybe you’re the type of person who keeps your phone and laptop batteries fully charged, but that has never been me. I’m typing quickly right now, trying to finish this article before my laptop’s battery is drained. Charging devices is not one of my strengths.
When my body’s battery dies, that old familiar nerve pain comes back in my left calf, as if a ghost that no one can see is invisibly stabbing my leg. I’m trying to train myself to charge my hip every night. For now, I do a full charge every few days for about an hour.
When I let the battery drain completely, the device turns off. Once I recharge, though, it doesn’t start up again until I prompt it to do so with my remote. My friend, the one who asked if I was turned on, knew my battery had run out earlier that day. She was making sure I had remembered to use the remote after I had myself charged again.
At age 36, I’m one of the youngest patients implanted with one of these units. Ideally, the spine is stronger for longer than three decades. But childhood abuse left my spine wrecked at a much younger age than normal wear and tear would have. I had my first spine surgery when I was 23. I was diagnosed with degenerative disc disorder back then, only five years into adulthood and already realizing my spine would likely have an expiration date well before my life would.
My spine held up for another twelve years. Then in December of last year, it didn’t anymore. My symptoms indicated that permanent nerve damage was a possibility, so I was admitted to the hospital two days after my MRI confirmed the risk. I had surgery the next day. It helped, but my spine was still unstable and the pain was only partially gone.
In February, the week that my husband and I were supposed to go to Ireland for our first kid-free vacation, I was back in the hospital. This time, my spine was fused from my fourth lumbar vertebrae to the one below it and then to the top of my sacrum. Then my spine was structurally sound. Recovery was rough, not only because of the extensive nature of the six-hour spinal fusion surgery, but also because it came two months after my last spine surgery, five months after one knee reconstruction, and eleven months after the other knee’s reconstruction. My poor body didn’t get to recover from the prior three surgeries before the fusion.
The nerve pain wasn’t all gone, though. In June, I needed a revision to one of the knee surgeries. I hoped my leg pain was from that issue, but once my knee was fixed, the nerve pain stayed.
I was living with a spinal cord injury. I was living with constant pain. I was living on Percocet. I was living from my bed almost all the time, unable to do anything else. I didn’t feel like I was living at all.
We tried physical therapy. We tried a few kinds of medications to treat peripheral neuropathy, but they either didn’t work or worked but sedated me too much to be useful. We tried one thing after another, and everything failed.
By summer, it was clear: the last resort was to try a spinal cord stimulator. I could have the surgery and possibly thrive with a machine inside me, or I could barely survive with opioids. I’m young, I have six children, and I was once a college athlete. I had to take the chance.
The implantation process
Before the full implantation, the device manufacturer Nevro needed all my medical records to make sure I was a good candidate. I also needed a psychiatric evaluation. They reviewed it all, said yes, and communicated with my insurance company to get pre-approval from them. Then it was time for a trial implant.
Getting a trial implant involved a procedure less invasive than surgery. They used two huge needles and two small incisions to place trial electrical leads imprecisely, yet precisely enough to test the device. Wires emerged from my back and connected to a trial IPG, which I wore on a Velcro belt for a week to see how it worked. I woke up the next day, got out of bed without too much soreness, and realized I could put full weight on both legs. I hadn’t done that in months due to the nerve damage.
After that week, the trial device was removed. I got a week’s vacation from nerve pain, and then it was back. The weeks in between the trial and the surgery were heavy with depression as I felt worse than better, feeling every bit of the nerve damage with no dissociation like before. I saw my therapist more often than usual to get through it, and my psychiatrist increased one of my anxiety medications. I made it through, but it was something akin to torture.
Finally, surgery day arrived. My Nevro representative talked me through using the remote and charger before I went home. I only vaguely remember the ride home and spent a couple days heavily medicated. The spinal incision for the electrodes and the hip incision for the device, plus the tunneling of the wire under my skin, made every movement hurt in the first couple of weeks. My leg pain from the nerve damage wasn’t apparent anymore, though. The intermittent shocks to my spine were working.
Can everyone benefit from this type of pain management?
This machine isn’t a miracle for every chronic pain patient. I can’t explain the science behind why it works for me and doesn’t work for others. Doctors may try, but I believe the entire neurological system is full of more mystery than certainty.
The HF10 has been used in Europe since 2010 and was approved by the FDA for use in the U.S. in May 2015. Research backs up its effectiveness, and thousands of people have been implanted, but it’s not the right fix for everyone. The trial helps eliminate patients who aren’t good candidates, but surgical complications can still happen, like infections or a rare spinal fluid leak. In about one out of 10 cases, the device is taken out, half of the time for insufficient pain relief and the other half for other reasons. Machines like mine work for many of us, but that doesn’t mean they work for everyone.
That said, I’m not the only one who has found success with a spinal cord stimulator. Similar stories have been told by Bloomberg Businessweek, CNBC, and MIT. This weird little machine in my body, along with its charger and remote, has given me my life back. I joke that I’m not sure I’m completely human anymore, but I don’t care.
The road ahead
This cycle of charging will go on forever, or at least until modern medicine comes up with something that doesn’t make me a bionic woman. My nerve damage can’t be fixed, but it can be treated.
Several brands of this kind of machine are approved by the FDA. The one that lives inside me is an HF10 spinal cord stimulator, made by Nevro. The FDA has cleared Nevro’s battery for at least ten years of juice until I need to go back under anesthesia to swap out units.
I’m hoping the new one I get in 2028 doesn’t have to be charged as often. I would love for them to figure out how to make the device not require charging at all. That’s not for my personal convenience, but for people living without the luxury of reliable electricity. I know other barriers, like cost and access to healthcare, would make it difficult for people lacking my privilege to get their own implant. But if battery charging weren’t necessary, a major obstacle to feasibility would be eliminated.
I’m also selfishly hoping my next IPG is smaller. I don’t know if I’ll ever get used to feeling the box through my skin, right under my left hand if I put my hands on my hips. It isn’t uncomfortable; I can even sleep on my side without feeling it. But it’s still there, not noticeable through clothing but easy to spot under a swimsuit.
For now, though, I’m happy to put up with the charging and oddities of it all. I’m not in severe chronic pain. I’ve been warned that I can still have bad days, but I haven’t had one yet. The device is considered successful if it reduces half of the pain. I still have opioids on hand if a hard day comes, but I haven’t needed to take any since the initial surgical pain subsided. This spinal cord stimulator has given me freedom, even if it requires regular charging for the rest of my life.
And this past week, my husband and I rescheduled our Ireland trip, the one we had to cancel for surgery. I’ll keep charging myself regularly. And, like my friend asked, I’ll make sure I’m turned on all the time.
Shannon Dingle is a teacher, writer, disability activist, and sex trafficking survivor. She has written for USA TODAY, Teen Vogue, and the Washington Post. She, her husband, and their six children live in Raleigh, NC.