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.
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.
-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.