I’m Wired
I’m Wired
Hi! It’s been a while. A lot has been going on. I got a new job which it is very nice to be employed again. They found me; it all happened pretty fast. I’m actually on-site five days a week, which was kind of weird at first because I hadn’t had a five-day-a-week on-site job since the end of 2019! But it is a smaller company and an easy location. It’s nice. It feels good to be doing something again!
But also, I’m actually three weeks post-spinal cord stimulator implantation surgery. This is the clearest my head has felt in a long time and the longest I’ve gone without significant leg pain in years. And all they had to do was put a wire and battery in my back. No big deal, right? (I know sarcasm doesn’t translate online. That was sarcasm)
Running to Ruin
It was fall 2018 when I began training for a half marathon and soon realized something was wrong with my leg. My “couch to half marathon” started with three-minute walk / one-minute run intervals, and by the third interval, I was in debilitating pain.
Kind of weird that almost exactly five years later, it looks like I have my solution. Five surgeries later, too. Excuse my language, but it has been a long fucking road.
First, a diagnosis of chronic exertional compartment syndrome (CECS), and then complex regional pain syndrome (CRPS). And with the diagnosis of CRPS, the treatment of implanting a spinal cord stimulator.
CRPS lately has been in the media due to Netflix’s “Take Care of Maya” documentary and the currently undergoing trial involving Maya Kowalski and the suicide of her mother, Beata. Everything with this is complicated, and I don’t suggest relying on Maya’s story to become educated on the condition. I am finding that most of the media out there is slanted one way or the other, and people feel very strongly about this case.
Not a lot of people know what CRPS is. I stayed overnight when I had my implant, and several medical professionals commented they had never heard of it before.
But my story has a diagnosis before the diagnosis - chronic exertional compartment syndrome (CECS), something else many people haven’t heard of. CECS is exercise-induced. When you exercise, your muscles expand in volume. But with CECS, the tissues do not expand with the muscle and cause a build-up of pressure and pain, and pain typically subsides when you stop the activity. The diagnosis is often found in both legs, and I tested positive in both legs, even though I didn’t really have symptoms in the right leg, so my first surgery was on both legs.
After that first surgery in April 2019, my right leg was fine. However, as I went through PT, my left leg wasn’t improving. Revisions aren’t common but not unheard of, and I continued to struggle and have pain in my left leg.
So I had a revision surgery done in September 2019, done by the same surgeon. The surgery went well, but my mom and I were put off by the nurses telling us before the surgery that my surgeon had a “VIP” patient coming in the afternoon, and they wanted all of his other surgeries done and out before then. That surgeon is a surgeon to professional athletes, and it has always bothered me that they said that. I might not be a millionaire, but my leg function is pretty valuable to me. Even more so, now, in retrospect.
For a while, it seemed like the second surgery worked. I was progressing through physical therapy, but once I started trying to run again, my symptoms began again.
This is where things began to get complicated.
I went back to the surgeon in January 2020 and essentially was told, “Oh well.” I was literally shrugged at. He said one revision was rare enough, and he wasn’t doing another. Although he said there could be a vascular condition causing my continued pain, he said the surgeons in that healthcare system “didn’t like” to do that surgery.
I brought my dad with me because he didn’t put up with bullshit, and this guy had him shocked into silence with his attitude. And, honestly, I don’t think my dad said anything because he knew how upset I was. I could barely keep my composure, and when we left the office, I started bawling.
I don’t like to hold grudges and really try not to. I can probably count the grudges I have on one hand (I don’t know if that’s a lot or not. Or if it is something people think about on a regular basis). This is one thing I will never forgive. It sent me on a three-year wild goose chase where I continued to lose my mobility because I was living in constant pain. I lost so much because of this. I couldn’t sit without pain. Sitting with my leg straight out and supported was my best bet to avoid pain. I have been perpetually stuck since October 2018, and when I didn’t think it could get any worse, it did.
Being awake meant pain. I’d want to sleep just to not hurt.
No, I don’t know if he had taken a different attitude if it would’ve changed anything. I have no idea where it would’ve taken me. But I also don’t know it wouldn’t have changed everything.
I wanted to train and run a half marathon to get in better shape, feel better mentally and physically, and be a better firefighter. Instead, it ruined my health in both physical and mental ways, and I’m no longer a firefighter. I’m not a firefighter. I couldn’t stand for five minutes. Sure as hell couldn’t do firefighting.
My Own Advocate
I went through a different healthcare system, and I ended up seeing vascular specialists, sports medicine doctors, surgeons, and neurologists. I had countless tests, X-rays, MRIs. And sometimes when the results showed “all normal!” there would be surprise when I seemed defeated, not happy, with the results.
I did end up having a third surgery where this time they removed the offending tissue. And the same damn thing happened. I’d get so far in recovery, and at a point, the pain would return. Each time this happened, the pain got worse. I had Botox in my leg, some relief. I started doing yoga; I was taking one-on-one lessons in early 2022. At this time, I was even hopeful.
And then shit got weird…er.
Not only did the pain return, again, but it was starting to spread. The pain had only been in my calf thus far. Now, it was throughout my entire leg. Hip to foot.
But the really weird thing was…I couldn’t wear shoes. It felt like my foot was being squeezed or like a weight was pressing hard on the top of my foot.
This was the point where everything with my leg began escalating. It was so weird to me how much worse it got, so quickly.
I was in so much pain, I wanted my leg gone. I began legitimately asking about amputation. My leg felt like I was constantly carrying a ball and chain. I felt as if it dragged along anywhere, a weight I couldn’t bear and kept pulling me down. If I went grocery shopping, I’d come home exhausted because my leg hurt so bad. Go the bar? Can’t sit on barstools, hurts your leg. Can’t go to a sporting event because I can’t sit in the seats or bleachers, hurts your leg. I tried to only go upstairs once a day because it was so painful to walk upstairs. I had to skip the Kenny Chesney concert in 2021, which I bought tickets for in 2019, because I knew there was no way in hell my leg wouldn’t be killing me the entire time. Lots of stairs, standing, and tight spaces. I’ve left so many things early, like Pirates games, because my leg would hurt so bad. Pain controlled my life. My life was planned around pain.
Guys, I thought I was losing my goddamn mind. It seemed like the pain knew no limits. Burning, aching, cramping, sharpness. There was no rhyme or reason. Nothing made sense; I couldn’t find a cause. I couldn’t wear leggings or skinny jeans because the compression caused pain. I couldn’t wear socks because they hurt my foot. Socks.
I don’t think I will ever be able to articulate what this did to me, physically or mentally.
But that brings us to…neurology and CRPS.
Different Department, Different Diagnosis
I was so drained mentally through all of this. How do you adequately explain years of seemingly random pain that just continued to get worse? That every choice you made was around your leg? And, again, I felt like I was just dragging my leg along as if it were dead weight.
While Botox helped my calf, I now had the problem with the rest of my leg and was frustrated (I want to point out that my sports medicine doctor was pretty great overall). This led me to a neurologist. As I saw the nurses and PAs, I could tell they found my issue interesting. At least they were paying attention. You could see the wheels turning for the PAs.
The neurosurgeon didn’t hesitate with his thoughts. He told me he believed it was complex regional pain syndrome.
What is Complex Regional Pain Syndrome?
My understanding of CRPS, in my case, is that nerves in my leg are firing off pain signals without reason. Something went haywire along the way, and now my leg is feeling pain where there isn’t any.
The Mayo Clinic defines CRPS as:
Complex regional pain syndrome (CRPS) is a form of chronic pain that usually affects an arm or a leg. complex regional pain syndrome (CRPS) typically develops after an injury, a surgery, a stroke or a heart attack. The pain is out of proportion to the severity of the initial injury.
You can read more about it here. The National Institute of Neurological Disorders and Strokes explains it more in detail. (PS - November is CRPS Awareness Month!)
I felt both weird and relieved as I learned more about the condition. For one, the human body is just so freaking wild. Two, realizing I wasn’t crazy for how much pain I was in was a huge relief.
Also, his enthusiasm for finding me a solution was also pretty encouraging.
He suggested a spinal cord stimulator. Johns Hopkins explains it simply, saying, “A spinal cord stimulator is an implanted device that sends low levels of electricity directly into the spinal cord to relieve pain.”
So in my case, the stimulator would change how many brain receives those misfired pain signals.
I actually know one other person with CRPS, and she also has a spinal cord stimulator, along with someone else who has a stimulator. You have to do a trial with the stimulator first, which is kind of cool because there aren’t many permanent treatments you can test drive.
Going into the trial, I was terrified if it didn’t work. My neurologist (who’s awesome) was pretty convinced that it would. However, I was at a point where I couldn’t be positive; I couldn’t give myself hope only to be disappointed again. And then what? I was so afraid of never finding relief. I couldn’t imagine living like that forever. Even now, I feel nauseous thinking about it.
During my trial, I did more in three days than I have probably done in three years. After the trial, unfortunately, I had to wait about two and a half months for surgery. Knowing the lump-on-a-long lifestyle I had been stuck with the previous two years could be coming to an end made it really freaking hard.
I started my job about a month before the surgery (and thank goodness they were so accommodating with me having to be out a few weeks for surgery after just starting!!!!). Before the job, I spent most of my day with my leg up on a recliner. Well, now I was sitting at a desk eight hours a day. It was wiping me out, and it was absolutely ridiculous that I couldn’t sit throughout the day and do my writing and editing without severe pain.
Unfortunately, I don’t think there is a way for me to determine what caused my CRPS, which is difficult to accept. It's still a loose end.
In My Droid Era
I seriously underestimated how much surgery would take me out and how badly my back would hurt. The surgery required two incisions (and a total of 22 staples, good times. “Just two incisions” my ass…) in order to insert a wire with leads that connected to my spine and a battery that is in my lower back but basically my ass.
Listen, at this point, I don’t give a fuck. Yes, the battery was implanted in my ass.
I had held out hope for so long and then felt forced to admit defeat. I had no idea how I would ever be free from pain. And, while I realize amputation would be a drastic decision, no one ever thought I was serious. I was. I was ready for my leg to be gone. I would’ve done anything to not be in pain all the time.
The SCS implant isn’t a cure for CRPS. It isn’t even expected to provide complete relief - success is considered a 50 to 70 percent reduction in pain in the hopes of requiring less pain medication and allowing for a more active lifestyle. The programs and settings are controlled via iPhone app. My body is connected to my phone via Bluetooth. Do you know how weird that is? Also, I have to charge my battery like once a month. I have to go on charge. The things that make you giggle…
Guys, my leg feels normal. It feels like the other one. And it has only been three weeks.
It took me a few days to figure out the word for how I’m feeling.
Whole.
I feel whole.
Having two working legs is something.
It took me two weeks to feel like I could be functional, but I have overestimated how much energy I think I have. But that is because of the surgery itself and the back pain. Not because of my leg. I can walk. My back does still hurt, though. For the first week, I felt like my back had been cracked open. Which, kind of.
I might be able to get my life back. One interesting thing I’ve noticed is with my health stats on my Apple Watch - my exercise minutes are definitely up. While I have been able to do more, it isn’t like I’m running or actually even exercising. I think it is mainly because my movement is improving. I’m not moving at a snail’s pace anymore or so deliberately.
I couldn’t drive for the first two weeks. For eight weeks, I can’t bend, lift, or twist, which can be difficult. But those are also movements that cause back pain.
I’ve been able to wear socks and shoes! Not boots yet, though. My body does need to take time to heal and build scar tissue, and this all works together somehow to optimize the treatment. And I do have to remind myself that I will most likely still have some pain at times. But honestly, wearing socks, sneakers, and leggings feels like a godsend. I’ve spent six months living in Crocs.
I keep thinking of several pop culture moments:
Pinnochio becoming a “real boy.” Again, having two functional legs is wild.
The instrumental reprise of The Little Mermaid’s “Part of Your World” as Ariel becomes human again. I honestly have no idea here.
The end of The Empire Strikes Back when Luke is having his robotic hand finished, and you see the wires and such. That little music lilt there.
The Force Awakens when R2-D2 finally powers up.
Although this is probably more Vader vibes, if I’m being honest. He’s more machine now than man, twisted and evil. (Dun, dun dun…)
Never would I have that electric implant permanently in my body would be the source of my relief. Frankly, I didn’t think I was going to have relief. All I could see was being stuck, forever. Not a good time.
It is a chance I didn’t think I’d have. My gratefulness is infinite.
I don’t think I’ve processed all of it. Maybe one day I’ll just break down sobbing for the years I lost but also my thankfulness for relief. There are so many emotions with this.
This nightmare has had a huge impact on my life. I won’t ever know just how much. I thought I was crazy because I was in pain 24/7. How much did that impact my mood, which then impacted my work, communication, actions, and so on? It was a domino effect, except the dominos went in different directions instead of a straight line.
I obviously can’t change the past and what has happened, but it still is difficult to think about how I’m not where I want to be in life and that my leg blocked so many things for me. It was hard to explain how much pain I was in, and it is hard to explain the negative impact it had on me, along with the corresponding consequences.
Weirder still is that I lived more than 25 years with two functional legs but having that again feels completely new. I feel like the pain warps your memory; there isn’t a before the pain. I know all the things I did and how active I was. But that was drowned out by the pain.
Mobility and the absence of pain are so new to me. There is so much opportunity for me now. I’m excited at the possibilities.
I have a chance.
This is strange. This is weird. This is a new start.
