Chronic exertional Compartment Syndrome. Say that ten times fast. CECS. What the heck is that?
That’s the second question I get, after “what did you do?”
Let’s go back to almost a year ago, to late November 2018. I decided I was going to run the 2019 Pittsburgh Half-Marathon. This has been a goal of mine for some time. I was slowly recovering from a mental breakdown that had occurred the previous month. It was a very slow process. But, as part of my recovery, I wanted to get back to consistently working out. Running the half seemed like a great idea. It would require me to follow a schedule, build up my cardio endurance, and cross an item off my bucket list. No problem. I signed up for a running group in Pittsburgh, the Steel City Road Runners, and I bought some quality cold-weather running gear because I hate running on a treadmill.
I decided to do a couch to 5k program before delving into the half-marathon program. My goal was to be on the half marathon program by January. I had it all planned out. Now, all I needed to do was run.
So I began, and I utilized walk-run intervals. Walk two minutes, run one. That’s how I started out. By the time I’d reach my third running interval, I’d get this terrible cramp-like feeling in my leg. I always made sure to stretch and warm up, but I would stop when it started and stretch in the middle of my run. Eventually, it got to the point where my leg was cramping so badly I couldn’t walk. I cannot explain how painful this was. It was like a sharp cramp, but it also felt compressed or like there was a build up. It was weird, and very painful. Many people told me to run through it and that training for the half would be painful. However, the fact was I couldn’t walk once the pain got really bad. Something just wasn’t right. So I went to my PCP.
My PCP recommended I get fitted for new running shoes, and the guy at the store said maybe I wasn’t warming up enough. I took both their recommendations, and it was still happening. I couldn’t get in three minutes of running. So my PCP sent me to a sports medicine doctor.
After a few minutes of discussion, he matter-of-factly told me, “I think it’s compartment syndrome.” I knew of compartment syndrome, but the emergency kind, that could happen from injuries. He explained this was chronic exertional compartment syndrome. What’s that, I probably asked.
Chronic exertional compartment syndrome is exercise-induced, a nerve condition, and causes pain, swelling, and sometimes disability in the leg or arm, as per the Mayo Clinic. It occurs most often in young adult runners and athletes. Symptoms include aching, burning, or cramping pain, tightness, numbness/tingling, weakness, swelling, and foot drop. I had several of these. The pain would begin consistently, and end with rest.
While the cause isn’t completely understood, basically the tissue surrounding the muscle doesn’t expand and that causes pressure to build up and then pain. It is under-diagnosed, but not considered common either.
The testing, however, for CECS is not pleasant so the doctor decided I should make an appointment, knowing it would be a few weeks, and try physical therapy in the meantime.
My physical therapist laughed at the idea it would be CECS because of how uncommon it is. But PT did nothing.
Now, the compartment pressure test. I’ve done it three times. Each time became increasingly unpleasant. Needles are inserted into the compartments of your muscle. It’s a freaking big needle. They numb you, thankfully, but you can feel the pressure of the needle of when it goes in, and that is really uncomfortable.
So, here’s how it goes – numbing, then first round of pressure testing, running until symptoms appear and you can’t handle it anymore, then the second round of pressure testing. 12 injections in total. It bleeds a lot too. It’s not fun.
Forgive me, but I don’t know the unit of measurement for the pressure test, but if you measure over 30, you test positive for compartment syndrome. I was ranging from 40-70 in my compartments over 30. Two compartments in each leg before the initial surgery. So the next step was surgery, scheduled for April.
My surgeon was great. He works with the Pittsburgh Steelers, so it’s not like he doesn’t come recommended. I had never had surgery before, I was nervous for that. It really weirded me out how one minute I was awake, then not, the back in recovery. When I came to, I asked for my mom. I asked her for a donut. She said no.
It was a rough few days at first. I was using crutches but still bearing weight. And I mean, it was both of my legs. Lots of ice, lots of elevation. After two weeks, I was back to work and “normal” activities.
I started physical therapy, and it soon became apparent that there was still something wrong with my left leg. Where my right leg was getting stronger, my left leg was still in a lot of pain. It would shake significantly as I tried to do the exercise, and it was still swollen. My surgeon recommended stopping physical therapy and advised that it would take time to heal.
Time. Time. Time.
I don’t have patience to begin with, and this definitely wasn’t easy. I wasn’t getting answers. There was no reasons as to why this wouldn’t have worked, and I had gone from “you’ll be running in eight weeks,” to “we don’t know when you’ll be healed.” I was very, very frustrated.
May went by, then June. Time was going by, but it was leaving me stuck on the couch. I couldn’t do anything. Sitting certain ways, like in the confined space of the manicure chair or a stadium seat, caused me discomfort. I soon couldn’t be on my feet for twenty minutes, then ten minutes at a time. Something as simple as going grocery shopping would make me have to stop, rest, put my leg up. It was a very lonely summer. I couldn’t do much at all. I sat on the couch with my leg elevated.
Unfortunately, this meant I had a lot of time with my own thoughts which wasn’t very pleasant. The longer I was in pain, the more frustrated I became. It was not a good place.
Eventually, my surgeon decided that we needed to do another compartment pressure test. I had an extremely hard time running. Exercise induced asthma decided it was time to make a reappearance, most likely as I hadn’t been working out in months. We tested it, and I was still showing over 30 in one of my compartments. Another surgery was scheduled. My surgeon said that this would only be the third time he had to do the revision.
The week before I was scheduled for surgery, I had a respiratory infection and they thought I had pneumonia. My surgery was pushed back four days. I was devastated. I was so ready for this to be over. I had been using a crutch since the beginning of August, and this was getting to the middle of September. All I wanted was to be pain free and mobile again.
Surgery came soon enough. This time, my mom was there when I woke up; I asked first for Penn State’s football record and then if I was going to work after. Somehow, despite this time I only had one leg operated on, I was in a lot more pain this time around. It took me a couple days longer to be able to walk upstairs. I was using crutches longer too.
Then, oddly enough, I woke up in the middle of the night one evening to go to the bathroom. As I walked downstairs, I noticed I had no pain when just a few hours earlier, I still had pain going up the stairs. The next morning, I still had no pain. Just like that.
Here I am, three weeks out of surgery. I started physical therapy and it is already going better than before. The other day, I was out and about for about four or five hours, mainly on my feet, and while I – and my legs – were exhausted by the end, it wasn’t like before. The surgeon said he didn’t see anything different this time, but something has obviously worked and made an improvement.
It looks like I have my mobility back, but I won’t consider it a win until about a month and a half from now when I can start running again.
A year ago, I didn’t even know there was another type of compartment syndrome. Now, I have two long scars on each leg because of it. Hopefully, my legs are on their way to being back to normal. It is amazing how much my mood has improved since gaining my mobility back. I knew I wasn’t doing great, but I didn’t realize I was feeling that poorly. Not being in pain all the time has definitely had an impact on me. I can go do things again. Not doing anything was very boring, and this has been a very frustrating process. It will be some time until I can go back to firefighting because, well, basically, I’m figuring out how to walk normally again. My legs really weakened over the last few months. There is going to be a lot of working out in my future.