If you knew me as a child, in middle school, high school, or in my early college years, you know that I was an energetic, athletic, always on the move individual. If you didn’t let me fill you in a bit. I started running as a child. I loved it, I was quite good at it, and would frequently outrun my peers in distance running competitions (I was never a sprinter). Before I could run competitively my dad and I would go on runs together. This probably started around 2nd or 3rd grade and began with mile or two short runs. As I grew older they evolved into 5 or 6 mile runs through the country. When I hit middle school I began running competitively and even ended up on the varsity cross country team in 7th grade. I was good, I was fast, I was alive when my feet were in tennis shoes and I was running on the track or through the woods. Along with cross country I played soccer and basketball. I continued to run into high school and added track into the mix. I wasn’t nearly as good in track, but it was a good outlet.
When I went to college I wasn’t committed to trying out for the team, but I decided to keep in shape and continue to be active. The first few years that wasn’t a problem. I would go for long walks with Kevin at our local park, I would go hiking with friends, and even running around campus or in the gym from time to time.
Junior year myself and 3 of my girlfriends decided we wanted to go running 3 times a week together (because we lived in different dorms). So one chilly fall morning my friends met me at my dorm and we began our first run together. We were only planning to go a mile or so the first day. We started running down the sidewalk and within 1 minute the worst shin splints of my life developed. I knew instantly something wasn’t right. I stopped…something I had never done up to this point. (In fact, I was sort of crazy in sports. I once ran 5 miles on a stress fractured tibia…oops.) I limped back to my dorm and decided to try some of the stretches I had learned and used for years. A few days later I decided to start back up and take things slow and add walking if I needed. Again, within seconds I was in serious pain. This continued for several days or weeks before I eventually stopped trying, thinking that eventually it would stop.
Fast forward a year or so. At this point I am married and living with Kevin off campus. He decided to apply to the Air Force to get a scholarship for medical school. In order to do that he had to pass a basic fitness test. Of course at the thought of running with my husband every night I was super excited. I laced up my shoes and we went for a run. Within seconds the shin splints hit, but I ignored them. I was sick of dealing with it. But no less than 15 seconds later the pain shot into my calves. I felt fire crawling up my legs (stopping at the knee) and looked down in horror to see my calf muscles bulging out like a rock was stuck beneath my skin. But I couldn’t stop. My legs were so tight and so cramped that it took me several minutes to be able to even be able to slow to a walk and eventually a limp.
I called my dad as soon as I was able to catch my breath and move my legs. We thought maybe it was dehydration, maybe a cramp. I got super hydrated and tried a few days later…same exact situation occurred in even less time. At that point we decided it was my shoes. A few weeks later Kevin passed his PT test and I was still unable to run or really walk at more than a leisurely stroll.
Over the summer we got me new shoes, we got special insoles, we drank gatorade, we walked and ran, we tried EVERYTHING we could think of and nothing changed, nothing helped, my condition worsened. At that point I hit the internet. I typed in my symptoms and the first thing I read was compartment syndrome. A rare condition that results from a crush injury. My mind flashed the Gray’s Anatomy as doctors performed that crazy procedure where they sliced down a screaming patients leg. Oh…I don’t have that I thought. I scrolled on and quickly learned there was a chronic version of compartment syndrome that is most commonly seen in young athletes. My symptoms were on the website in precise detail. I read that invasive testing and extreme surgery were involved and I decided I would NEVER do that. Instead I researched physical therapy techniques and implemented them. Kevin started medical school and learned osteopathic treatments and we tried them.
Over the next 2 years my condition worsened to the point I lost all other exercise options as my pain took over my activities one by one. The breaking point came when I lost the ability to swim, or take the dogs on a walk without debilitating pain. The symptoms at that point would last DAYS at a time. I went to my doctor and received a referral to an orthopedic surgeon. (This is where several of you started following my journey). A compartment pressure test confirmed that I indeed had Chronic Exhertional Compartment Syndrome.
What is CECS? So you have these 4 compartments in your calf/shin (anterior, lateral, posterior, and deep posterior). When you have compartment syndrome the pressure in those compartments gets incredibly elevated during any sort of physical activity. If it reaches a certain point it causes the symptoms I was having (extreme tightness, swelling, redness, heat, pain). Think of it this way…when you wrap a rubber band around the tip or your finger it turns red and gets fat right? That is pretty much what was happening in my legs. The fascia (between muscle and fat) was wrapping around my muscles so tightly that blood was becoming stuck in my lower legs and was unable to escape. So during the surgery, a fasciotomy, a surgeon goes into the effected compartments and cuts the fascia to release the pressure (kinda like cutting the rubber band in half).
So we scheduled my surgery (anterior and lateral compartments only) and on December 29, 2015 I had my first surgery. If you remember the pictures my legs turned black and blue, I had 3.5 inch cuts down the sides of my legs and I endured some of the most horrific pain I can imagine. It took several months to recover with PT 3 times a week. But, eventually I got better and started running for the first time in YEARS pain free. It was thrilling.
By June of 2016 I made it up to a half mile at a time with no symptoms (before that point the longest I made it was 1/10 of a mile). Kevin and I returned to the south to visit family and so he could do his interview rotations for his psych residency. We decided to run around my parents neighborhood. I laced up my running shoes and excitedly walked out the front door to go my old route from high school. We started running and all was well for the first 1/4 mile. Then out of no where the pain emerged. I was shocked, terrified, and angry. I remembered my physical therapist telling me not to freak out if it happened, it could just be a muscle soreness issue. So again, the next day we went out and before we even hit the 1/2 mile mark it was back, but this time almost exclusively in my calves not shins.
Over the next few days the symptoms reemerged into my every day life. I went to a vascular surgeon to look for an extremely rare issue that is common with CECS where an artery in the back of your leg gets compressed by your muscles. They ran a test that showed while I was exercising the blood pressure in my legs was dropping, but not enough to have the condition (PAES) I was looking for. A second opinion, and a pretty invasive test at at Kansas University ruled out that vascular condition completely.
I returned to my orthopedic surgeon who was as surprised as I was that my symptoms had returned. He said it was rare to begin with, but to have the condition return was even more rare. The test I had with the dropping BP to my legs during exercise was enough to know that it had returned and relocated to those back compartments. Thank God we didn’t have to redo the pressure testing. We did do an MRI to rule out any other issues.
At this point, the only thing we can do is repeat the surgery and focus on one of the back compartment/s, but possibly all 4. Once he fixes the posterior he will evaluate the remaining 3 compartments and may chose to release all of them. The chances of it being completely resolved is not as high as I would hope (70%). It is a risk, but there are no other options that are more effective or within our insurance’s regulations. I am holding on to hope at this point, because I have no other choice. If this procedure doesn’t work I am looking at many many years of limited activity and chronic pain.
I wanted to take the time to explain what exactly is wrong with my legs as many of you who know me in day to day life are pretty familiar with my frequent leg pain, silly work shoes, and brightly colored compression socks. I also wanted to share this journey because I am hoping any poor soul who is doing a google search for chronic exhertional compartment syndrome will find this blog and reach out and get connected into the very small world of CECS. (If that is you, please know there is a support group on Facebook and we are all very willing to share our stories, recommend doctors, and talk about what has and hasn’t worked! There are about 500 of us on there from many states and countries.)
In a few weeks I will be undergoing round 2 of surgery and hoping for success. PLEASE pray that this time it works, because quite honestly I am DREADING doing this a 2nd time and do not think a 3rd time would even be considered (although I know people who have done it). Pray that the recovery will be easier this go around because there are only 2 people in our home. Pray that despite the even more invasive techniques (they go through and possibly cut through muscles) used this time that recovery will be more smooth than last year! Feel free to ask questions and follow my journey that will be documented on Facebook and instagram (#cecs, #compartmentsyndrome, #fasciotomy….just incase you don’t know me in real life)!
So there you have it. If you were ever curious about what was actually wrong with my legs now you know! If you have questions PLEASE ask. I actually really enjoy talking to people about it. I am asked oodles of questions by nurses, techs, and anyone else who runs tests on me because it is so rare. So ask away :)
Anna
Anna
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