First I'd like to thank you for the comments and apologize for not posting an update sooner or answering some of the questions you've posted.
I wish I could say that my legs are now perfectly healed and that I am back to doing the activities that I love so much. At one point I was very hopeful that the procedure worked as planned. I was able to actually put on my now old and somewhat dry-rotted inline skates and actually skate several times around my block. A HUGE step in the right direction. My endurance was completely shot and my skates needed to be replaced, but I was so hopeful that I could be normal again.
Fast forward to December and our first ski trip of the season. I was in horrible shape for skiing and the conditions were not great. We were rarely ever able to ski more than one run before heading inside for a rest/cocktail. I guess it was the 2nd or 3rd day on the slope when I started getting painful sensations in the back of my calves. The fronts seemed OK, which was good, but ultimately I was nervous that the one compartment that wasn't released during my surgery was acting up. It was during our second in February when I started to have full blown attacks forcing me to stop on the slope and remove my skis. This continued for the rest of our trip. It was obvious that the fourth compartment needed to be released.
I put off going to see my orthopedic surgeon as long as I could, but I started to have attacks on the treadmill and realized that it wasn't going to get any better. I was relieved when the surgeon didn't require another pressure test and was willing to schedule surgery based on my experience with the syndrome. He did warn me quite a bit about the additional muscle trauma that will occur because the remaining compartment is the deep posterior and much harder to access. He warned that there would be a higher risk of nerve damage and that recovery would likely take longer. Things I didn't necessarily want to hear. But after putting it off as long as I could, I now have my second surgery scheduled. It is less than a week away.
I've re-read through this blog and am not looking forward to the recovery, but I hope that this will be the final step in getting me back to where I was.
Thank you again for your comments and support.
My Experience with Chronic Exertional Compartment Syndrome
One woman's adventures living with the pain, diagnosis, therapy and surgery of Chronic Exertional Compartment Syndrome (CECS).
Wednesday, June 20, 2012
Tuesday, May 31, 2011
Six Weeks Post-Surgery
I started back to work 2 weeks ago with restrictions for light duty only. No climbing, extended periods of walking, extended time standing, or lifting over 15 pounds. It's nice to be back to work and see all my wonderful co-workers, but it has been harder on my legs than I had hoped. I'm getting very frustrated at my continued limitations. I'm ready for the pain to go away and get back to my regular life.
My legs are tender to the touch and bolts of pain shoot through my legs anytime my legs get close enough to something that puts any kind of real pressure on them. Even stubbing my toe causes pain in my calves (not to mention what happens if I put my foot down with any kind of authority at all). Walking and standing the small amount that I do at work does tend to make my calves sore, especially walking the next day.
My next follow-up appointment with my doctor isn't until June 10. I'm interested in finding out if what I'm experiencing is considered normal. I'm losing patience with my recovery (or lack of it).
My legs are tender to the touch and bolts of pain shoot through my legs anytime my legs get close enough to something that puts any kind of real pressure on them. Even stubbing my toe causes pain in my calves (not to mention what happens if I put my foot down with any kind of authority at all). Walking and standing the small amount that I do at work does tend to make my calves sore, especially walking the next day.
My next follow-up appointment with my doctor isn't until June 10. I'm interested in finding out if what I'm experiencing is considered normal. I'm losing patience with my recovery (or lack of it).
Friday, May 13, 2011
My Second Post-Surgery Follow-Up
Almost 4 weeks post surgery and and I went in for a checkup today. The doc thinks things are looking good and wants me to continue with non-weightbearing exercise (the stationary bike) for another 4 weeks. I've been released to go back to work for light duty and my boss has been accommodating enough to allow me to do some desk work for the next three weeks. I go back to work on Monday, May 16 for a short shift. I'm looking forward to seeing all my friends and to getting back into a regular day to day schedule. My legs are still tender to the touch and there are still certain movements that are more difficult than others, but I think getting out and moving a bit more will be helpful. I'll post current photos of my legs soon, but they are getting better and looking much less gross.
Friday, May 6, 2011
First Post-Surgery Trip to the Gym
I finally got my rear in gear and made it to the gym today. I was nervous that I would knock into someone or something or otherwise hurt my legs, but luckily, I was accident free. I did a mostly typical chest and triceps workout, though wasn't able to do dips. Stretching was more difficult since the majority focuses on my legs. Finally I made it to the stationary bike. I did the full 20 minutes the doctor allowed without any trouble. Tomorrow will be a better indication of how my body actually responds.
Thursday, May 5, 2011
Two Weeks Post Surgery
I'm a few days late for an actual 2 week post-surgery update, but it's close enough. The bruising on my legs is finally starting to disappear and my incisions are healing nicely, though my legs are still quite tender. I'm walking well, but if I need to bend over to get something, I'm forced to bend at my midsection instead of my knees. I'm able to walk upstairs without much trouble, but coming down is more problematic. The numbness does seem to be subsiding, so that's good news.
I've been given the go ahead from the surgeon to begin exercising on a stationary bike, but I haven't tried it yet. I hope to make it to the gym tomorrow to do some upper body work and then give the bike a try.
The newest pics are from Tuesday (exactly two weeks after surgery) and can be found on
My Progress page.
I've been given the go ahead from the surgeon to begin exercising on a stationary bike, but I haven't tried it yet. I hope to make it to the gym tomorrow to do some upper body work and then give the bike a try.
The newest pics are from Tuesday (exactly two weeks after surgery) and can be found on
My Progress page.
Wednesday, April 27, 2011
My First Post-Surgery Follow-Up
For my first adventure outside of the house in more than a week, I visited the surgeon's office for my post-surgery follow-up appointment. Surprisingly, unlike usual, we weren't kept waiting. Even the surgeon himself took time out of his busy schedule to visit me and actually take the stitches out of my incisions himself. It stung a couple of times, but when he washed them off, my face contorted into cringed mess. My husband said he should have taken a picture of my face for the blog. I wasn't entirely amused at the time. Anyway, the surgeon was satisfied with the incisions and the minor amount of swelling he noticed in my legs. He was confident that my numbness was caused by my swelling and not any nerve damage. For photos see My Progress page.
He wants to continue to keep my activity level at a bare minimum for at least another week. At that time, I can begin doing up to 20 minutes of exercise on a stationary bike at very low resistance. When I see him again in another 3 weeks, he'll let me know if I can graduate to weight bearing exercise like walking or the elliptical. He reminded me that while the external incisions are small, inside my legs I have 6 incisions running from my ankle to my knee.
The short outing completely wiped me out.
He wants to continue to keep my activity level at a bare minimum for at least another week. At that time, I can begin doing up to 20 minutes of exercise on a stationary bike at very low resistance. When I see him again in another 3 weeks, he'll let me know if I can graduate to weight bearing exercise like walking or the elliptical. He reminded me that while the external incisions are small, inside my legs I have 6 incisions running from my ankle to my knee.
The short outing completely wiped me out.
Tuesday, April 26, 2011
One Week Post Surgery
So it's been a week. I don't have a great deal new to report, but a week post surgery seems like a milestone of sorts. My throat is starting to finally feel better allowing me to focus better on the pain in my legs.
Without pain medication, sleep has eluded me for the past several nights. The doctor never responded to the refill request sent to the pharmacy last week, nor did he call my husband back yesterday. If I had to do it over again, I would do more research for a surgeon who is more familiar with CECS. Lesson learned. Tomorrow is my first post-op appointment with him. Hopefully I will be in a foul enough mood to give him a piece of my mind for being so dismissive, not listening and for being just downright rude.
Without pain medication, sleep has eluded me for the past several nights. The doctor never responded to the refill request sent to the pharmacy last week, nor did he call my husband back yesterday. If I had to do it over again, I would do more research for a surgeon who is more familiar with CECS. Lesson learned. Tomorrow is my first post-op appointment with him. Hopefully I will be in a foul enough mood to give him a piece of my mind for being so dismissive, not listening and for being just downright rude.
Saturday, April 23, 2011
My Recovery Days 3 & 4
I'm running low on pain medicine, so I've cut back to one pill every 5 hours (down from two pills every 4 hours). I've noticed several things since my pain is not as masked as it was.
- While my legs are sore, they feel more like they are bruised than incised. I'm guessing it is because of the manipulation that the surgeon had to do to ensure my nerves were out of the way when he made the cuts through my fascia.
- My throat hurts more than my legs do. The anesthesiologist mentioned that I might have a sore throat after surgery because of the endotracheal tube he inserted, but I guess I hadn't really noticed how bad it was until I was no longer taking a full dose of pain medicine. It is very hard to eat anything that isn't cold and creamy, so ice cream and yogurt it is.
- I've begun to notice areas of my legs and the top of my feet that are completely numb, especially my right leg. The surgeon warned me about this because of the proximity of the superficial peroneal nerve to the superficial posterior compartment. He mentioned that it could be transient numbness or permanent. Time will only tell.
- I am more mobile and my walking is less comical than it was. I was even able to stand up long enough to take a shower.
All and all, things are moving along. I'm sleeping better than I was and cutting down on the pain medicine has also decreased my nausea. For photos, see My Progress page.
Thursday, April 21, 2011
My Recovery Day 2
I didn't sleep well again last night. Still tossing and turning trying to get comfortable. I also tried taking only 1 pain pill every four hours during the night instead of 2, but I believe the additional pain contributed to my lack of sleep. I've been out of bed waddling around a bit this morning and can feel the pain in my actual calf muscles rather than just the pain from the incisions. But today I can take the ACE bandages off and hopefully I'll be more comfortable without them.
Removing the bandages definitely made my legs more comfortable, but it also exposes the incisions to potential bumps and hits so it's important to be careful. My "walking" still consists of mostly shuffling and heel to toe strikes seem like a long way off.
Removing the bandages definitely made my legs more comfortable, but it also exposes the incisions to potential bumps and hits so it's important to be careful. My "walking" still consists of mostly shuffling and heel to toe strikes seem like a long way off.
Wednesday, April 20, 2011
My Recovery Night 1, Day 1
I was pretty out of it for most of the rest of the night after surgery. They had sent me home with ice packs for my legs and I was to keep them elevated as much as possible. I didn't sleep well not because of the pain, but just the uncomfortable pressure from the ACE bandage and the additional heaviness from the ice packs, while trying to keep my legs elevated. I just really could find a comfortable position.
Today hasn't been bad. The pain is well controlled by the meds, though I am experiencing itching and discomfort from the ACE bandages. I did unwrap them to loosen them up and found that the metal piece that holds the end of the bandage down was stuck into my skin. Certainly explains the discomfort. I've had to get up a couple of times and was surprised at how little trouble I had. Of course, the hydrocodone may have masked the pain making it seem easier than it normally would have been.
Today hasn't been bad. The pain is well controlled by the meds, though I am experiencing itching and discomfort from the ACE bandages. I did unwrap them to loosen them up and found that the metal piece that holds the end of the bandage down was stuck into my skin. Certainly explains the discomfort. I've had to get up a couple of times and was surprised at how little trouble I had. Of course, the hydrocodone may have masked the pain making it seem easier than it normally would have been.
My Surgery
I scheduled the surgery for April 19, 2011 at 2:15pm (which at the time of this writing was yesterday). I arrived an hour prior to surgery at 1:15pm terribly hungry and thirsty since I was told not to eat or drink after midnight. After a bit more paperwork, they called me back where I changed into my surgical duds and they put me in a bed to get my vitals and have me sign all the consents.
After a bit, the surgeon came by to discuss the procedure. He had decided that he only wanted to release the anterior and lateral compartments and I immediately began to have a panic attack. I tried to explain that we had discussed this in the office and agreed that he would do the superficial posterior as well. It seemed he was still not getting the fact that the method we used to bring on a CECS attack was not a realistic version of the type of attack I experience when skating or skiing. He was ready to scrap the surgery at this point and do another round of pressure tests. I knew that if I scrapped the surgery, it was likely I'd never be back. Finally I was able to get through to him and have him release the three compartments that we originally agreed to. Though at this point, my confidence in my surgeon was disappearing rapidly.
Eventually it was time to wheel me back to the OR. I woke up in the recovery room with a decent amount of pain. They had already given me Dilaudid in my IV, but they ultimately had to also give me morphine and then hydrocodone in pill form. My pain level was pretty low at this point and they were ready to send me home. My legs were simply wrapped in an ACE bandage over the two incisions. They wheeled me out to the car and helped get me into the passenger seat. I had brought crutches from home to assist in the transition. My husband drove me home and helped me do the crutch waddle into my bed. It was actually much easier to put some weight on my legs than I expected.
After a bit, the surgeon came by to discuss the procedure. He had decided that he only wanted to release the anterior and lateral compartments and I immediately began to have a panic attack. I tried to explain that we had discussed this in the office and agreed that he would do the superficial posterior as well. It seemed he was still not getting the fact that the method we used to bring on a CECS attack was not a realistic version of the type of attack I experience when skating or skiing. He was ready to scrap the surgery at this point and do another round of pressure tests. I knew that if I scrapped the surgery, it was likely I'd never be back. Finally I was able to get through to him and have him release the three compartments that we originally agreed to. Though at this point, my confidence in my surgeon was disappearing rapidly.
Eventually it was time to wheel me back to the OR. I woke up in the recovery room with a decent amount of pain. They had already given me Dilaudid in my IV, but they ultimately had to also give me morphine and then hydrocodone in pill form. My pain level was pretty low at this point and they were ready to send me home. My legs were simply wrapped in an ACE bandage over the two incisions. They wheeled me out to the car and helped get me into the passenger seat. I had brought crutches from home to assist in the transition. My husband drove me home and helped me do the crutch waddle into my bed. It was actually much easier to put some weight on my legs than I expected.
My Intra-Compartmental Pressure Test
For my Intra-Compartmental Pressure Test, I was to run on a treadmill to bring on an attack, hurry back to the examination room where the doctor was waiting with the device used to measure my post exercise compartmental pressures. My doctor was nice enough to forgo the pre-exercise pressure readings, which saved me a few needle sticks.
I was nervous about this appointment for a few reasons. One reason of course was the pain associated with bringing on a CECS attack and then having a large needle stuck into each compartment of my calves. But even more so than the pain, I was nervous that running on a treadmill to bring on a CECS attack would not present itself in the same manner that inline skating and snow skiing does. Runners are the largest group of athletes that suffer from CECS, but I am not, nor have I ever been a runner. I knew I would have an attack, I just wasn't sure that all four compartments would measure appropriate pressures.
It took about 7 minutes on the treadmill to bring on an attack painful enough that I could not continue. Somehow I made it back to the examination room where the doctor was waiting with needle in hand. I was already in a significant amount of pain because of the CECS attack, but the needle measurements certainly added a great deal of insult to injury.
The doctor had to perform my anterior compartment pressure measurement twice because he could not believe the reading. Anything above 30 mm Hg is considered abnormally high. The pressure in my anterior compartment was 120 mm Hg. My lateral compartment pressure measured 50 mm Hg. Though neither my superficial posterior nor my deep posterior showed abnormally high pressure measurements. This was exactly what I was concerned about. From experience, I know that the pain from a CECS attack surrounds my entire calf and not just in my anterior and lateral compartments.
I expressed my concerns to the doctor and he explained that the deep posterior compartment release involves a longer recovery period and has a lower success rate. And that he hoped that by releasing only the anterior and lateral compartments, enough room would be created to keep the pressure from building in the deep posterior. He also added that the superficial posterior compartment was borderline and that it was up to me if I wanted to have him release this one as well. While I was hesitant to have only three compartments released instead of all four, I could see his point, but that I definitely wanted three releases instead of just two. My biggest fear is that I will go though this ordeal and that we will find out that we have to do it again.
So the next step was scheduling the surgery.
I was nervous about this appointment for a few reasons. One reason of course was the pain associated with bringing on a CECS attack and then having a large needle stuck into each compartment of my calves. But even more so than the pain, I was nervous that running on a treadmill to bring on a CECS attack would not present itself in the same manner that inline skating and snow skiing does. Runners are the largest group of athletes that suffer from CECS, but I am not, nor have I ever been a runner. I knew I would have an attack, I just wasn't sure that all four compartments would measure appropriate pressures.
It took about 7 minutes on the treadmill to bring on an attack painful enough that I could not continue. Somehow I made it back to the examination room where the doctor was waiting with needle in hand. I was already in a significant amount of pain because of the CECS attack, but the needle measurements certainly added a great deal of insult to injury.
The doctor had to perform my anterior compartment pressure measurement twice because he could not believe the reading. Anything above 30 mm Hg is considered abnormally high. The pressure in my anterior compartment was 120 mm Hg. My lateral compartment pressure measured 50 mm Hg. Though neither my superficial posterior nor my deep posterior showed abnormally high pressure measurements. This was exactly what I was concerned about. From experience, I know that the pain from a CECS attack surrounds my entire calf and not just in my anterior and lateral compartments.
I expressed my concerns to the doctor and he explained that the deep posterior compartment release involves a longer recovery period and has a lower success rate. And that he hoped that by releasing only the anterior and lateral compartments, enough room would be created to keep the pressure from building in the deep posterior. He also added that the superficial posterior compartment was borderline and that it was up to me if I wanted to have him release this one as well. While I was hesitant to have only three compartments released instead of all four, I could see his point, but that I definitely wanted three releases instead of just two. My biggest fear is that I will go though this ordeal and that we will find out that we have to do it again.
So the next step was scheduling the surgery.
My Change of Heart
In 2009 and 2010, I began experiencing CECS symptoms on a more frequent basis when skiing, but also when I cut the grass and walked for any length of time. In August, 2010 I started a new full time job requiring me to be on my feet and walk a great deal for 7 hours a day.
Finally during my December, 2010 and February, 2011 ski trips, I was forced to stop skiing because of horrible attacks on each day, essentially ruining both ski vacations.
Because I was unwilling to give up skiing, I made an appointment with the orthopedic surgeon I had used for a broken bone in 2008 to discuss my options. He suggested we make another appointment to perform the intra-compartmental pressure tests to determine the true nature of my CECS. I made my appointment for the very next day.
My New Athletic Love
During the time I was experiencing exertional compartment syndrome symptoms when skating, I fell in love with another sport, downhill snow skiing. It was because of my enjoyment of snow skiing, I was able to give up skating. I was overjoyed that skiing did not seem to have the same painful effect on my legs. On rare occasions I would have an attack if I was on a level slope (cat walk) and had to propel myself using movements similar to cross country skiing and inline skating. But these were manageable.
I told myself that if the exertional compartment syndrome began to truly interfere with my enjoyment of snow skiing, I would reconsider having the surgery.
I continued to ski with only occasional problems, especially after having had my ski boots custom fitted and surgery was the furthest thing from my mind. For several years, I was able to enjoy mostly pain free skiing.
I told myself that if the exertional compartment syndrome began to truly interfere with my enjoyment of snow skiing, I would reconsider having the surgery.
I continued to ski with only occasional problems, especially after having had my ski boots custom fitted and surgery was the furthest thing from my mind. For several years, I was able to enjoy mostly pain free skiing.
My Conservative Treatment
The easiest option to try first was to purchase off-the-shelf orthodics, which I did on my way home from my visit with the doctor. I immediately placed them in my skates to give them a try. Unfortunately, I had a CECS attack within 10 minutes or so. I continued to give the orthodics a chance by combining them with differing thicknesses of socks. Ultimately, I did find that simply ultra-thin sock liners worked best, but still offered no long term relief.
Next I had custom orthodics made at the Sports Medicine Center where my doctor was located. Of course, my health insurance did not cover them, but I was willing to pay almost anything if they would work. Again, as soon as they were ready, I took them home and gave them a try. Again, they provided no relief.
But I still had hope that the physical therapy would work. Three days a week for a period of four months, I attended physical therapy. It involved a great deal of deep tissue massage and electrical muscle stimulation in my lower legs, in addition to exercises and drills that I performed both at the physical therapy office and at home. During this time, I also abstained from all skating as rest is also considered a conservative form of treatment for CECS.
After everything, no amount of conservative treatment helped to completely rid me of the condition and my pain continued each time I skated. It was a heartbreaking decision, but I choose to give up skating instead of going through with the surgery.
Next I had custom orthodics made at the Sports Medicine Center where my doctor was located. Of course, my health insurance did not cover them, but I was willing to pay almost anything if they would work. Again, as soon as they were ready, I took them home and gave them a try. Again, they provided no relief.
But I still had hope that the physical therapy would work. Three days a week for a period of four months, I attended physical therapy. It involved a great deal of deep tissue massage and electrical muscle stimulation in my lower legs, in addition to exercises and drills that I performed both at the physical therapy office and at home. During this time, I also abstained from all skating as rest is also considered a conservative form of treatment for CECS.
After everything, no amount of conservative treatment helped to completely rid me of the condition and my pain continued each time I skated. It was a heartbreaking decision, but I choose to give up skating instead of going through with the surgery.
My Diagnosis
It was a week or so before I could get in to see the doctor. During the appointment, I described my symptoms, and he watched my gait to check for problems. He observed that I heavily over-pronated, but aside from that, he was almost immediately able to determine that I was suffering from Chronic Exertional Compartment Syndrome (CECS) in all four quadrants of both of my lower legs (calves) simply based on the description of my symptoms. He explained the condition to me and that the only definitive method to diagnose it was to perform compression tests on my legs before and after exercise. He also explained that the tests are invasive and somewhat painful and that I did not need them if I wanted to attempt to ease my symptoms using conservative treatment options.
My conservative options included using off-the-shelf orthodics (i.e. Superfeet), having custom orthodics made and physical therapy. Beyond that, surgery to release the compartments, or fasciotomy was the most successful, long-term treatment. He added that the conservative options rarely help, but suggested I try them first, which I was more than happy to do since I wasn't particularly interested in having surgery. So the next step was to begin the conservative treatments.
My Athletic History
As a kid, I played soccer for several years, but never considered myself particularly athletic. But sometime between late 1999 and early 2000, I began inline skating with a few friends of mine. It was the first and only sport that I felt like I actually enjoyed. With continued practice, I became comfortable doing group skates with my local skate team and was encouraged by how physically fit I was becoming. In late 2002, I decided I would begin skating marathons and began training for my first 26.2 miles. Shortly after I increased my training intensity, I began getting cramps in my lower legs. At first, I thought it was lactic acid buildup, lack of potassium and/or lack of sufficient stretching prior to skating. I did everything I could to prevent the cramps, but the cramps never got better and eventually were so bad that after skating for 10 or 15 minutes, I was forced to stop and remove my skates, unable to continue. After one particularly painful skate with a friend which resulted in tears and my inability to skate further, I finally made an appointment with an Orthopedist who specialized in Sports Medicine.
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