I’m not a marathon runner. In fact I don’t really even think I’m that much of an athlete. However I have suffered from chronic exertional compartment syndrome and have since had surgery to correct it. I thought I’d write about my experience here in the hopes that someone might find it useful.
A Little Bit of History
I was very active, mostly with a lot of squash, premier netball, as well as the odd game of touch rugby. I had had a tightening of what I thought were the muscles on the outside of my legs for some time and had asked various people if they knew how to stretch them. I’m fairly au fait with anatomy after studying it at school but even I couldn’t figure it out. They’d been uncomfortable mostly while I was playing netball, but I put it down to not being as fit as I could be and put up with the pain.
It wasn’t until one day I was playing squash when the pain got so bad I had to come off the court. Luckily the manager of the team I was training with happened to be a physiotherapist and mentioned that the symptoms I was describing sounded like compartment syndrome. I was training for squash nationals and playing finals netball so I didn’t want to stop. I’m also fairly stubborn when it comes to pain stopping me doing things (says the girl who walked home one day with two badly sprained ankles!) so I didn’t treat this any differently.
With squash nationals done and dusted, I moved away from the city where I first heard about compartment syndrome a few months later but began to research it online. It wasn’t until one day I left the squash court and ended up on the floor in tears from the pain that I knew I had to do something about it.
What causes the pain?
When we exercise, the body pumps blood to the muscles that are being worked, causing the muscles to swell or expand. The muscles are contained within a sheath. You know when you buy meat from the supermarket and it sometimes has that clear, stretchy stuff on it? That clear covering is the sheath. When people with compartment syndrome exercise, there’s not enough room within the sheath for the expanding muscle, therefore pressure builds and pain arises. A friend of mine once used a great analogy – it’s like trying to blow a balloon (muscle) up inside a drink bottle (sheath). It just doesn’t work.
Doing Something About it
I went to my GP who referred me to a specialist sports practitioner, who then referred me to a surgeon who specialised in compartment syndrome. Said surgeon sent me for tests (which, by the way, aren’t covered by ACC as the ‘injury’ is deemed to be progressive – kind of like RSI which, incidentally, IS covered).
Honestly, if there were a best part about having CECS, it would have to be seeing a medical practitioner about this condition and watching their eyes light up when you tell them what you have. It’s not a common condition and I think they get a little bit excited when they get to deal with something different from the norm. I digress!
By the time I got the appointment for pressure tests, I had developed drop-foot (or foot-drop as it’s otherwise known) which is when your foot makes a distinctive “slapping” sound as you walk because you can’t lift the front of your foot properly. I couldn’t walk more than 100 metres without the pain getting so bad I’d have to stop. Ten minutes after ceasing exercise, I was fine – which was probably the single most frustrating thing about the entire condition.
The Pressure Tests
I will not lie. The tests are not pleasant. Basically I had three injections of anaesthetic (in marked spots) into each leg to numb the areas for when the BIG needle gets inserted. I was then told to do an activity that causes the pain and come back to the room once it comes on. The specialist was surprised that I was back within five minutes, even though I’d continued as long as I possibly could because I wanted to be sure I got the results I knew would come.
The second round of injections measure the pressure inside the compartments of your leg. Anything over 30mmHg is “surgery territory”. As a gauge, my worst compartment was ~90mmHg. No wonder I was in so much pain!
As a result of the pressure tests, it was recommended that I be prioritised for surgery and I was placed on a waiting list. Through a mix of medical misadventure and me moving city again (and therefore District Health Board jurisdiction) it took me a further 8 months before I finally got my surgery. Bearing in mind that this was around two years after I had initially consulted my GP, I was virtually unable to walk and had put on a lot of weight – a horrible side affect for someone who used to be so active.
Finally! The Surgery
The technical name for the surgery I had was bilateral tricompartmental fasciotomies, which loosely translates to having three compartments in each leg released. When I say released… they make an incision, then cut open the sheath that holds the muscle in place. It basically allows the muscle to expand as large as it needs to when you’re exercising.
It was an overnight stay in Middlemore Hospital for me (and I’m thankful it was only one night!). When it was time to go home, I actually managed to stand up with my legs supporting my full weight while I got dressed. The only piece of advice I can give you is DON’T DO THIS. You may think you won’t move, but you will and it hurts! I was in a wheelchair to start of with, but given crutches before I left the hospital.
Healing Time
I have two scars on each leg – one on the outside above my ankle bone about four inches long and one on the inside of my leg toward the front about midway up my lower leg – about three inches long.
The advice I had read and was given was that it should be around 12 weeks until I could get 100% back into sport. This wasn’t the case for me, however. I went back to work two weeks after surgery (I recommend taking longer – perhaps another week) and even though I held a sedentary position, my ankles and feet would swell up enormously after keeping them “down” for the day, even though I had tried to elevate them as much as I could.
My employer at the time was less than supportive, even though I’d requested that I work from home. If you can, I would definitely aim for three weeks to recover. I was walking without crutches after one week but would still get pain and swelling in the week following. My recovery wasn’t aided by a minor infection in one of the wounds either, so I now have a more prominent scar than I would have otherwise.
Getting back into the Swing of Sport
So, after my two years of not being able to do anything, I was finally free to get back into sport! Unfortunately for me, I don’t think my body was as keen as my mind was and I was bogged down with miscellaneous injuries over the coming year (including prolapsed discs in my back and strained calf muscles). It’s now been around 15 months since I had the surgery and I’m finally uninjured enough to get back on the exercise wagon – enough to hopefully start losing some of the 20kg I packed on over the time I was involuntarily inactive.
Even when running now, I get numbness in my toes and feet. Areas of my leg, ankle and foot are still numb due to the nerves being severed during surgery but I’m hoping to get most of that feeling back. I still get some fatigue and soreness in the same areas as before but nowhere near the amount of agony I was in pre-surgery. My legs are also a funny “shape” because the muscles bulge out in places they didn’t bulge before, but it’s purely aesthetic and I knew to expect that. They are though, still a lot more svelt and “spongey” to the touch than they were pre-surgery. My poor legs.. what an ordeal!
Further Information
If you have any questions, you can contact me or leave a comment on this post.
Here are some websites I found useful:
MayoClinic – Chronic exertional compartment syndrome (Highly Recommended)
Wikipedia – Chronic Compartment Syndrome
EDIT: I have now also created a Facebook page. See https://www.facebook.com/compartmentsyndrome/
277 replies on “Life After Compartment Syndrome”
My left arm has had some severe pain while lifting heavy objects. After two and a half weeks my girlfriend finally made me go to the doctor. He said he thinks it is compartment syndrome of the arm. Anyone had any experience with this in the arm? The pain feels like my bone is breaking when it happens followed by a dull burning pain for the next 10-30 minutes. But I will also have pain at random times throughout the day, in my forearm, wrist, and hand. Any comments would be greatly appreciated.
I fell asleep on the floor with all of my weight on my right leg. I had been there for several hours before I woke up to a drastically swollen leg. I tried to bare weight on it, when I could finally get off the floor, and just fell over. My right leg was numb. My pee was the color of sweet tea. I had a fever of 104, and my kidneys and liver were rapidly shutting down. The doc told me I had a good possibility of losing my leg or my life at that point. I don’t remember much of that night of the next 6 days. I was in ICU. I had 6 surgeries including a skin graph and a blood transfusion. I was in the hospital for 15 days. That was almost two months ago. I don’t have any feeling on the back of my cafe. I get sensations in my foot and have a little feeling on the arch but can’t move my foot or toes. The surgeon said feeling should come back in 6 to 9 months. I’m really hoping it comes back.
The same thing happened to me only I fell down stairs and was unconscious for a few hrs, I didn’t get it properly diagnosed until 6 days later cause of doctors thinking I only wanted pain meds. It was my 3rd trip to the ER when someone finally did bloodwork which showed my kidneys & liver weren’t working properly. I had 3 weeks of dialysis and a couple blood transfusions. Im 11 was in and have a lot of numbness in my foot and calf, also a ton of pain in my foot to which nothings seems to help. I can’t walk at all and am scared I may never again. Im praying to god im able to some day but it just doesn’t seem to be getting better.
I also was knocked out in my bathroom for god knows how long. I was severely dehydrated and I almost lost my leg. My doctor told me if I waited an hour or two more I would have lost it. It’s my upper left leg but it affected my foot. So now it’s 8 months later I’m finally walking and I still have a lot of nerve pain in my foot. I don’t know about you guys but I was in so much pain in the 2 months I was in the hospital I needed extremely large doses of opiates to just calm me down. I’m looking for anybody that has had feeling in their leg and foot come back fully.
This is odd. I had what the doctors think was a seizure. Feel in a prayer position on the floor, on top of my legs and right arm for 10 to 12 hours. They at first said I would lose both legs. Got a second opinion, kept my legs. They took out quite a bit of muscle. Lost ask my feeling from my knee caps down and my right arm. That eventually came back almost a year and a half later. My right leg is worse than my left due to a skin graph that pulls my muscle in word. Which gives me a club foot. They did 5 surgeries in 10 days. Then one more to correct my right foot. I thought I would feel better when I could feel my feet again. Not true. Sure I can move my ankles a little more. But once you can feel things you can really feel them! My arm is at a 90 prevent. My asl isn’t as precise, but understandable. I suffer from drop foot. Have to wear braces. When I walk is only short distances. Couldn’t bear much more. Now I’m just rambling. But it feels better that I’m not alone. Not that I would wish this on anyone. It sucks.
Wow I can’t believe it! I feel like I was reading my own story! Same exact thing happened to me! I had to have 2 heart surgeries, 4 kidney surgeries, was bed bound in the hospital for total of 9 months , had infections due to aftercare maltreatment, a total of 20 blood transfusions, and a foot drop that ended up being permanent! I do have a question for you, has any feeling or movement come back? I still have no use of my foot or toes. It’s driving me nuts! My insurance won’t even pay for physical therapy anymore because they feel it’s hopeless! I refuse to give up! According to most doctors I was never going to walk again because I was paralyzed for the 9 months I was in the hospital but here I am today, walking and I work at a job that I’m on my feet all day for 8 hours! Are there any exercises or treatments you’ve done that helped get back sensation and movement? I do have to tell you for the last year I felt like I was alone in this but it’s really nice (although I do wish it were under different circumstances) to speak with someone like me!
My name is Joe Sanchez l had acute compartment syndrome over2 years ago
On my right leg my story is very long and complicated .
I did not get much help from my doctor or physical therapy
I started to look elsewhere for help
I was dealing with pain and dropped foot.
I found a massage therapist to work on stretching my nerves and the last six months l have been going to the gym to work on my leg and foot. I’m going 5 to 6 days a week.
That is really helping me.
My nerves are getting stronger my foot is lifting up a little each week my numbness is going away slowly
I refuse to give up with my faith in the Lord Jesus Christ the help from massage therapist and a lot of hard work at the gym my condition will improve.
Don’t give up continue to fight do a lot of exercise eat well.and above all put your faith on the LORD JESUS CHRIST
YOU ARE WELCOME TO CALL ME AT 626 388 7213 WISH YOU A QUICK RECOVERY GOD BLESS YOU.
I incurred and injury I’m my upper left light after horsing around w/ a friend. I felt ok at first, then had the worst pain I could ever imagine. By the time my wife brought me to a doctor I was incapable of walking whatsoever. The temperature in the doctor’s office must have been freezing. I vaguely remember nurses and receptionists wearing long sleeves and sweaters, where as I had a tee shirt and sorts on, sweating bullets. I vomited in the examination room from the immense pain, I was given a high powered pain killer injection In my other thigh, another shot w/ sedatives and anti nausea meds. (Ive hurt myself plenty growing up in southern Louisiana and always just shrugged it off, this was my first time going to the doctor for anything worse than the flu). Was immediately rushed to the operating room (not much recollection of it), and woke up w/ my thigh opened up from almost knee to butt, tubes everywhere, and a pump sucking fluids from my thigh. Another surgery 3 days later to close the wound and then released w/ a prescription and pat on the back. I also tried to go back to work entirely too soon, (how I was raised), which hampered my career badly. I had to take off days in the subsequent weeks due to unbearable pain, or nausea from medication, with no support from management, despite the fact that I actually built a PowerPoint presentation w/ fairly graphic immages of what my leg looked like. I presented this to multiple groups at my company at the request of other managers. (I’m an engineer by trade), yet no sympathy whatsoever. My surgeon released me from his care a few weeks after w/ yet more prescriptions for pain. Weeks followed and I had unimaginable pain from nerve regeneration, yet was told I couldn’t get any type of nerve blocker b/c it would inhibit my recovery. Suffered for months from it due to the depth of the fasciotomy, which severed major nerves. Pain absolutely sucked, but also became majorly depressed having to be at home alone all day long, unable to exercise whatsoever. I’m now about 5 months removed from surgery, w/ lingering pain. I’m constantly asked, “when will I be back at work”, from close friends who I work w/, b/c my wound has healed”. The foot and a half incision on my leg did heall very quickly, albeit i still have a major scar, but no one can comprehend the internal pain in my leg I was still experiencing. I began to feel physically better, but my mental state was totally off, and began therapy to help w/ it. My surgeon fixed my leg, but never told me the nasty after affects that some have after major surgery. On the road to recovery now, months later. I just hope others are aware that regardless of preexisting mental issues, a perfectly well balanced person can get major depression from this type of operation, and should seek help for it. I wish all the best with recovery, compartment syndrome is no joke, and you’re not crazy if it takes forever to get back right, forums like this help!!!
Hi- Im on my third surgery 2nd one on left leg.. developed infection in Left lower incision.. took 4 months of antibiotics and pain meds to feel better..Yesterday I notice the scar is red, warm and swollen..Hurts to touch and I also have shooting pains in my lower leg bilaterally as well…What do I do?? Didnt know this was such a huge issue, now I see everyone else and I feel like Im not losing my mind..
hope it gets easier over time
Hi All
I developed CECS 8 years ago after doing a boot camp. I had always played sport, many different ones and at least twice a week. I’d never tried long distance running before really and a doctor said that probably triggered it. It started as soreness in my shins, I’m stubborn thought I was unfit and doubled the number of boot camps a week. Then calf pain and my stubbornness said “do more boot camps”. The day I couldn’t walk 50m I realized I’d pushed it too far. I took 2 years before I saw a doctor (told you I was stubborn). Had bilateral tricompartment surgery in 2011. After a couple of months I could walk easier but I’d say no more than 4 months after surgery my legs were worse than before. I was so upset. I buried myself in my office job and put on 20kgs. In 2015 it had gotten to the point of me being in constant pain, increased incredibly when I exercise but even when I don’t I have a constant pain. I went to a new doctor but he said the symptoms sounded like CECS and wouldn’t test anything else. He sent me back to my sport doctor for pressure testing again. All compartments were high again so back in for second surgery September 2015. Same surgeon – bilateral tricompartment releases. It’s been just over a year and I can say with no doubt my legs are worse than ever. I also now have the pleasure of numbness in both legs except for a section near my left ankle which sets off a fireball sensationup my who body if anything touches it. And if you accidentally bump my legs exvpect me to cry. I can’t walk more than 100m on flat ground. If there is a minor incline I could make maybe 20m before the legs start flaring. Stairs are no good. I can’t bike, I can’t swim. Even at rest my calves are now huge and don’t fit in ski boots, ugg boots, even my jeans get stuck on them. I am in pain everyday and I am tired after 8 years. I can’t exercise at all of my lower body needs to move, only upper body is left and I loved sport so much. 25kgs heavier than when I first got hurt.
Does anyone have anything I can try please?!??!? I’ve done years of Physio, acupuncture (that actually helps for a few hours), chiro, vitamins, meditation, yoga, Pilates, stretches etc for nothing but a waste of money. Please someone must know something that might help. I’m in Australia.
That sounds awful and debilitating to your quality of life.
I don’t have any suggestions or advice as my daughter, aged 16 is going through Acute CS and it has been 11 month of hell, operations, recovery, setbacks and still continuing.
I do hope someone has the right answers by shared experience and I wish you well and hope it can get under some control ASAP.
Nicola
Jade, I’m sorry to hear that. I’m in the same boat. I developed Compartment Syndrome after a couple of breaks to my knee and leg from an accident. I had to have emergency surgery. That was five years ago, and the pain and swelling is the same today as it was from day one. My calf is huge, I can’t stand it. I’m told by all my doctors that my leg will never get any better. I have tried numerous different meds, nothing has helped me. The only thing left for me to get rid of the pain is to cut my nerves in my leg and foot and cap them off. Then I will have no feelings in my leg and foot. I’m not sure if I really want to do that, I have been putting it off every time my doctor brings it up.
I used to be a very active person, that has changed. I have a good hour or two each day, then my leg swells and the pain is aweful. I would give anything to get my leg in a cut pair of boots.
I wish I had some good advice for you. Just try to keep your spirits up. I guess in my situation I’m great full that I did not loose my leg. The doctors honestly were not even sure if the could save it.
Good luck to you and I hope you find some relief from your pain.
WOW! This sounds exactly like my story. From being thinking I am out of shape, to constant pain, to being stubborn. I have an excellent nerve surgeon in DC and he thinks I have Compartment Syndrome. I have been putting off that surgery for 10 years. Maybe it is time!
My daughter injured herself Nov 2015 at gymnastics. She felt a pop in her forearm and then followed by bruising, swelling, tightness, pain and shiny skin.
Hospital did xrays and said it was probably a tore muscle and to elevate and use ice.
6 weeks it was left, gradually becoming worse.
Eventually in Dec 2015 she was diagnosed with acute CS and told the horrifying truth, that it was too late and the muscles had died and tendons.
She began to lose function. She didnt have a fasciotomy as they said it had settled down and there would be risk of infection.
However, Jan 2016 she was knocked and CS happened again! She had an emergency fasciotomy. This happened again in Feb and March and May. She needed 2 skin grafts.
After her last bleed in May 2016 her wrist started to drop and she couldnt do any physio due to position and pain.
This got worse and in Sept 2016 she was diagnosed with Volkmann Ischemic Contracture.
She went down for her 8th op to remove the dead muscle and tendons. It was a mess. Tendons and the main nerve were stuck with scarring causing her the severe pain she was experiencing.
She is also waiting for her 9th op in a few days for a skin ‘free flap’ to close the hole in her arm.
Later she will need a muscle slide where muscle is taken from elsewhere and put into her arm to see if she will gain any function.
She has been so brave, resillient and strong.
Hi Nicola,
I recently had my forearm released after a rowing race caused it to turn acute. I had to fly home from america with it, unaware at this point that it was acute. However, luckily for me i was aware i had had chronic CS for the last year. Despite being told the pressure in the plane could have left me with an amputated arm i was lucky enough to have my surgery and only have a little nerve damage rather than dead muscle. However, i am interested as to what training your daughter did and whether it was premature (this is on her recovery after 1st faciotomy). I plan on returning to training within the week and am worried if it was any particular exercise or type of training eg. weights that caused the occurrence again. I wish the best of luck to you and your daughter.
Hi everyone,
I fractured my right tib/fib above the ankle a week ago and have just returned home from hospital (England, on NHS) following the setting of the bones and of course, the wonderful reason we’re all here – Compartment Syndrome!
Reading about people’s experiences I am very apprehensive about the pain I could well face for the rest of my life as a result of CS. I have not yet started meaningful physio, as my wound was only finally closed two days ago after a failed first attempt. The swelling pressure pains in my lower leg are random, sometimes sharp and frankly very worrying. I am a new father with a baby girl, am the main breadwinner in my home and though I work in an office I do, or did, have an active life outside of work which included cycling, walking, driving etc.
Can anyone provide me with some guidance and reassurance about next steps (excuse the pun) I should be taking and the kind of life I can or should expect to lead?
I am also considering taking legal action against the Hospital Trust which performed surgery on me, because it took them several hours to correctly diagnose my CS and operate on it, despite my being in intense pain to the point that I was regularly crying out. I’m not out to scam anyone, it’s just that if my condition/recovery time may have been worsened by medical staff’s tardiness (we’re talking up to 10 hours here), then I want some sort of compensation for that, especially as this may effect me for the rest of my life.
I cant really advise on next steps because my daughter was diagnosed 11 month ago and still having operations from the cs.
She has had repeated cs, fasciotomies and skin grafts and to top it off she has a wrist contracture brought on by cs.
Her CS was left 6 weeks! I am seeking legal advice as it has destroyed her arm. She had muscles and tendons that had died as a result and had to have them removed! She has to have further surgery.
She was having physio but after another relapse of CS brought on by a bang to the injured arm, a fasciotomy was carried out again and skin graft and thats when the wrist began to contract (volkmann ischemic contracture) Her arm now does not function at all, her wrist or fingers.
After 10 hours did they perform a fasciotomy and did you lose any muscle/function?
It sounds like they caught it in time.
I had a fasciotomy in my left leg due to a motorbike accident and me not going to the hospital. 2-3 weeks later me leg was so big I couldn’t move. In the end I had to go hospital. Have 5 operations and 2 blood transfusion. My leg gets hot a lot of the time but what’s the most confusing is the vibrating sounds I’d have . I thought it was my phone at first but my phone was no where near the pocket of/or my left leg. Does anyone else have this problem. I had to have 1 of the 3 thigh muscles taking out
My daughters CS was delayed by 6 weeks. All back muscles of the forearm were removed and tendons. Shes had 9 operations,2 skin grafts, repeated CS brought on by a bang to the arm. Her wrist contracted (dropped) Volkmann Contracture.
She has to have a skin free flap operation and an op to remove muscle from elsewhere and put in the arm.
Her arm doesn’t get hot or vibrate. She has sensation but no function at all in the fingers, wrist or arm.
She also has had 3 blood transfusions. She is 16 years old
Hi there
My story is almost exactly your story! Fell over in netball and fractured my lower leg due to drop foot, physio diagnosed CECS, waited 18 months for surgery because of all the tests. I am now 6 months post surgery. I have started power walking as a precursor to running and am up to 15 mile distances though not one single pound has shifted (yet)! My question is did you experience an increase in leg cramps at night? In the last few months I’ve found that if i stretch my legs in my sleep I end up with awful cramps and I have to get out of bed and walk around for a minute. then its fine. I didn’t have that before surgery. I can live with the numbness, the swelling and even the phantom itches inside my leg that no amount of scratching will satisfy……..but oh the cramps! who doesn’t have a good stretch when they wake up in the morning – me 🙁
Hello,
Yes I did end up with cramps! Although I’m not sure if they were a consequence of the surgery or if I just didn’t notice them as much before. I started taking a magnesium supplement which helped immensely. I still take magnesium daily and I hardly get cramps at all anymore. Good luck with your running progress!
hi my name is john ! ive broken my tibia and fibula in a soccer game and snapped them both completely in half so i needed emergency surgery. after ive had surgery to put the bones back into place, i then began to form compartment syndrome. Over swelling in my whole foot and calf area and alot of pain. its been about a month and a half and my foot is slowly getting less painful and less swelling but it still is very painfull if left not elevtated for a long time. i just wanted to know how long it takes for the swelling to go away. and i also wanted to ask if its normal to get shock pains in the foot and leg every 10 minutes or so.. like really sharp shock pains just shooting from my foot up my leg.so please let me know as soon as possible please!! thank you !
For me yes I had shock pains I still get them from time to time I am still recovering from compartment syndrome in my left leg I am still doing physical therapy and it’s 4 years later. I have a constant reminder of the whole thing I’m blind because of it I get headaches every day. My eye swelled so much that it came out of the socket.