Just a Distraction

I am many things. I'm a wife and a mother. I'm a bestselling novelist. I'm an artist. I'm diabetic. I'm a reader. I'm a photographer and a Greek mythology enthusiast. I am a lover of iced chai, Duran Duran music and I'm a chronic pain sufferer. The list goes on, but I'll stop there.

Two years ago, I had a spinal cord stimulator placed in my body. What is a spinal cord stimulator?

It's a small device that's implanted under the skin. There are thin, flexible leads that are connected to the stimulator (which also contains a battery). The other ends are placed near specific nerves in the spine. The stimulator sends mild pulses through the leads to the nerves. Those pulses interrupt the pain signals on their way to the brain before they are felt. (Please check out the Boston Scientific website for more information.) Put simply, it's a distraction for the brain. 

It took me quite a while to come to the decision to go through with this. I'd gone through many surgeries by that time, but never one on my spine. I did a ton of research. A lot of people discouraged me and told me horror stories. Others claimed the stimulator simply didn't work for them. I watched videos, I read articles, I talked to my pain specialist. Most of all, I talked to my husband, Steven, who told me if I was nervous about it, there was no reason I needed to go through with it.

There's a very long and complicated story that brought us here. When the urge to write this started pushing at me, I was thinking about approaching it from a couple of different angles. I've decided not to belabor the whole thing. After all, this began a week before my sixteenth birthday. As I write this, I am fifty-five years old. That's almost forty years, and there's a lot to tell about that big chunk of time. I'll be honest; I'm not known for writing in short form. (Writing a synopsis is like hell on Earth for me. I'd much rather write a full-length novel than that little blurb on the back of the book.) I'm going to break from my norm this time. If the words chronic pain sufferer made you want to stop reading, I ask you to hang in there with me for a little longer. 

There. That's eleven years all wrapped up in one photograph. Now, here are the bullet points:

-Broke my wrist at (almost) sixteen.

-Struggled with what was diagnosed as tendonitis for nearly twenty-five years.

-Broke my wrist again (in a different place) when I was forty-one.

-In 2015 a hemi-head prosthetic was placed inside my wrist.

-In 2021 the hemi-head was removed and another prosthetic, this time a DRUJ, was put in its place.

-I had a lot of physical therapy in the second half of 2021, only to find my pain increasing.

-I had a tendon removed (I can no longer move my right pinky) in 2021.

-In November 2023, after seeing two different pain specialists, using every topical medication known to man, taking all kinds of pain killers, trying every brace and wrap I could get my hands on and becoming a physical therapy dropout, I was diagnosed with CRPS (Complex Regional Pain Syndrome).

-In May 2024, I went through a weeklong trial for a spinal cord stimulator.

-In July 2024, I had the stimulator placed.

The first time I broke it, I bounced back. Nothing could keep me off the ice. I competed, placing first in a figures competition. I was still an active member of my precision team, too. (We were the Sparklers, and we skated for the Rocky Mountain Figure Skating Club.) This was an official team photo, and my cast was just a part of it.

The second time I broke it, I was much older. We were living in Germany at the time, and I was treated at the Landstuhl Regional Medical Center. Two x-rays were taken, and I saw two different physicians who both decided not to cast it but to put me in a removable brace. No one knows for sure, but it's been said that this might be a big part of the chronic pain I suffer from now.

What is CRPS? 

All in all, I've had five surgeries on my wrist and two for the stimulator. I take medication for nerve pain, and I take painkillers every day. Have things changed for me since having the spinal cord stimulator? Yes. Has my pain decreased? Yes. Would I do it again? Also, yes.

Are you hanging in there so far?

Before I could go through the trial, I had to have an MRI done on my spine. If there was anything that might cause a problem with the leads being able to move from between my shoulder blades down to my hip, I wouldn't be able to do it. I'd had MRI's done on my wrist before, but this was a whole different story. They gave me a pair of headphones and piped a non-stop string of Duran Duran songs through them while I tried to be as still as possible. It was super loud. It sounded like I was in the middle of a construction site, and it was hard not to jump at some of the banging and clanging. That was an incredibly long hour. Fortunately, when it was done, my surgeon reported that I was good to go, and my first surgery date was scheduled.

When I went in for my trial, I really had no idea how the whole thing was going to work. Like I mentioned before, I had done a lot of research, but there were many details that hadn't been included. None of them were bad, it was just a lot of information. Ben, the clinical specialist from Boston Scientific who was assigned to me, came in and explained what would take place that day. Ben is awesome. He was in the operating room with me. He told me they were going to bring me out of sedation just enough that I could talk to him, answer some of his questions, then they would finish the procedure. After it was done, I couldn't recall speaking to him, but apparently, I did. When I came out of surgery, I sat with him and his laptop, and together we worked on a schedule that helped alleviate some of my pain. When he does this, what I feel is electrical stimulation. It's a little like pins and needles when your hand and fingers fall asleep, but it doesn't hurt. I felt an immediate change in the level of my pain. I don't quite know how to explain it because I wasn't pain free. I still had a lot of pain, but some of the sharp edge had been taken from it. It was softened. I was able to relax a little bit.

I knew the day I began the trial that I was going to have the stimulator placed. I was nervous about it, but as I made my way through those seven days, I became sure I wanted to go through with it. I had to keep track of my pain level throughout the day with an app on my phone. Ben expected and received daily texts from me. When the trial ended, and all the pain came rushing back, I wanted to schedule the next surgery immediately.

Immediately and insurance don't often go hand in hand. It wasn't until the end of July that everything came together. Ben was back in the operating room again—and he swears I spoke to him during this second procedure, too, but I'm just taking his word for it. Recovery was much easier for this than it was for the surgeries on my wrist. When I left the hospital that day, I had a two-inch incision between my shoulder blades, and a three-inch incision and a stimulator inserted in the back of my right hip. I had post-op pain and was sore for a couple of weeks. I had to be careful. I couldn't reach up over my head, I couldn't bend over, and I couldn't twist. I was told not to lift anything heavier than five pounds. I carried a small pillow with me to lean on in the car and on the couch until the back of my hip was no longer sore. By the first of October, I was considered healed. Sometimes I can feel a buzz in my right arm and shoulder when the schedule changes, or if I'm in a position that the leads don't like. I lift my chin when that happens and the buzz goes away. It was a very strange thing at first, but now I'm used to it.

So, why didn't I write this on the first anniversary of the surgery? Honestly, I've always been happy that I decided to get the stimulator. It has definitely lessened my pain. The thing is, CRPS changes all the time. Sometimes on a daily basis. There are symptoms I've had for years, but frequently, new ones will pop up. I text Ben regularly during the colder months. Cold is my enemy. I've seen him many times in the last two years. He's come up with different schedules, and he's tried to hit my trouble spots. It's hard to know if my pain has just increased or if the stimulator stopped working as well. I know that if I didn't have the stimulator, my pain would be much worse. It's a good thing. I've never regretted the stimulator, but it didn't seem to be bringing me as much relief as it had during that weeklong trial.

When I saw Ben at the beginning of June, he tried something different. He set up a program instead of a schedule. What's the difference?  A schedule works from 30% percent strength to 70%. It changes, never staying in one place for very long. This is a good choice of therapy for a lot of people. A program works at 50% strength all the time. It never changes. 50% doesn't sound like a lot, but for many, that consistent level of stimulation becomes too much over time, and it has to be brought down. When stimulation is too high, the affected limb becomes heavy, and pain flares. I've had two months of pretty decent relief since Ben and I made this change. That newfound relief is what prompted me to sit down and write this all out.

The spinal cord stimulator is a tool. It's much like the pain killers I take, and the medication I use to help me with the nerve damage I've suffered. It's like the lidocaine cream I layer beneath the THC/CBD salve I cover my fingers, wrist and lower arm with every day. It's like the soft wraps and compression gloves I wear, or the million and one heat sources I have scattered throughout my house. It's like the furry, warm mittens I carry in my bag year-round, and the sling I hang around my neck when my wrist and fingers feel overworked and completely useless. The spinal cord stimulator, like all these other things, is a tool, not a cure. Most people with CRPS—not all, but most—never go into remission. Oftentimes, CRPS continues to worsen over time, so the things I use to mute some of my pain today won't work a week or a month from now. One day, a particular brace supports the way I need it to, but when I put it on three days later, it hurts and I can't wear it. I'm super sensitive to weather. Barometric pressure affects me in a huge way and not much helps my pain when this happens—not even this change we recently made with my stimulator. My condition, as well as my pain, are chronic. I feel it every second of every day, and nothing I've tried has yet to significantly diminish it. All these tools help.

If you or someone you love suffers from chronic pain, my first suggestion to you would be to find a pain specialist. A lot of these caregivers are RN's, and others are MD's and surgeons. I had to work with a few of them before I found a good fit. Don't forget to speak up for yourself and make sure you can communicate with the person you're working with. It wasn't until I found the doctor I'm with now that I got a diagnosis that made sense. A good pain specialist will help you with this, and they'll have suggestions for things that will help your individual needs. If they suggest a spinal cord stimulator, and you've come across this post, maybe what I've written here will shed some light on my personal experience. Hopefully, the links I've included can lead you to more information on this kind of pain relief.

Everybody's experiences are unique, and if you ask ten different people what they think about a certain thing, you'll more than likely hear ten different responses. For better or worse, now I've added mine to the mix.