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/
Thanks for the great article – I’m also in NZ, saw a sports doctor a few years back and found out the hard way that ACC does not cover.
If I do pay for pre appointments etc, do you know whether the surgery cost will be covered if I go on a public waiting list or is this just a private surgery regardless?
Hi Jess. The surgery cost was covered for me under the public system. It was >10 years ago now so things might have changed but I hope you get your surgery soon!
Thanks, everyone, for sharing your stories! I am 3 weeks and 3 days post-op, bilateral fasciotomy to release all four compartments in each leg.
I developed chronic exertional compartment syndrome in 2013 while training for my first half marathon. I’m by no means fast, but I love to run! At first I thought maybe it was just shin splints, or over-doing it, but it increasingly got worse over time, usually starting up around the 1/4 mile mark. Some runs felt okay…one was so bad I turned and walked back after about 1/4 mile and had to sit in my car for awhile before I could even drive away, the foot drop was so bad.
I was 28 when it started, and I’m a nurse, so I eventually had a suspicion as to what may be happening. It took 3 years to get diagnosed. The first doc told me to try some shoe inserts. $60 later, no change. The second doc said he thought this was out of his scope and he wanted me to see a neurologist (at least he was honest). It was 2 months before they could get me in to see neuro, and in the meantime I tried chiropractic measures. A buddy of mine is a (excellent) chiropractor nearby, and did manual adhesion removal (MAR), which seemed to help. Because of this success I cancelled my appt with the neurologist. Soon after stopping at the chiropractor, things continued to progress as before. The 3rd orthopedic doc I went to finally recognized what was likely happening, and referred me to a specialist at nearby University of Iowa Hospitals, where pressure testing confirmed CECS.
After reading your stories, I’d say I’ve been blessed to have a smooth, and near painless, recovery so far. I was up walking with crutches the day of surgery, and used them for a few days, not quite a week. Honestly I used the crutches more to steady myself, as the gabapentin they put me on made me dizzy. Lots of ice, elevating (in my recliner, with two pillows under my legs), and tylenol. By day 7, I was walking around the house sans crutches. It was beautiful that day, and I spent most of it with a book on my back deck! After the 2nd week I’ve barely needed to take anything for pain.
I haven’t gone back to work yet, and have been loving the “time off” to work on projects and things around the house. Both legs, but especially the right, are still quite numb around the incisions, and I can tell when I crouch down there’s a bit of swelling. As of now, I’m just excited to get the go-ahead to try running, as well as anxious to see how scarring ends up. If anyone has tips/tricks/advice that has worked to prevent scarring, I’d love to hear (:
Amanda-springer@hotmail.com
Amanda
I had bilateral fasciotomy on Oct 5th. So it has been just over 4 weeks. One leg healed great. I could probably run on it today if my other leg didn’t hurt so much. Anyways, my left leg got a minor infection. It took 2 weeks to heal and only once it healed is my leg starting to feel better. Most of my pain is near my ankle bone, feels like tendon or muscle is really really tight.It also itches pretty bad. Is this common? I can’t recall that my right leg had this pain. I was hoping to have been pain free by now. Im still limping a bit in my left leg.
I have this exact same problem with the pain around my left ankle. Have you found any relief?
Another vote for the same ankle pain in only my left ankle after having surgery for both legs. I am 3 weeks post op and would love some follow up on this. I hope all went well. I was a half marathon runner, avid outdoorsman, martial artists, before being halted by this almost a year ago. The last year has been a dark road of depression due to not being able to do the things that bring me joy. Any insight on how/if this was resolved would be very appreciated. Thanks!
I just had the surgery a little over a week ago, I have pain in the left ankle as well. I had 2 Compartments released, even though all 4 were elevated, my doctor said he saw no difference in releasing 4 compared to 2. I was able to walk the day of surgery with no crutches but had to hold onto something. I now able to walk fine however after getting up from lying down I get terrible pain, it goes away but the pain is severe. And like the others, most of the pain is in my left ankle.
I have the same ankle problem. I called the Dr and they said that with the release they have to cut through some of the muscles where the fascia attached and that point is near the ankle so it’s totally normal.
This is a great blog I had compartment syndrome after being unconscious for a few hours I didn’t have insurance so I didn’t want to go to hospital until I couldn’t take the pain any longer I was in the hospital for 36 days the surgeon had to remove all the muscles and tendons on the outside of my entire lower leg my kidneys failed and was on dialysis for two weeks until they improved enough to heal on there own it has been 8 months since my 7 surgeries and I can not move my foot or wiggle my toes anymore I have constant leg pain and sever pain in my foot and toes I can put weight on my leg just not all of my weight I am having trouble doing therapy because the muscles and tendons are no longer there to get better I was told by the doctors it might be as good as it’s gonna get I have a permanent full lower leg prosthetic that is basically a boot to lift my foot so I don’t trip on it and give me extra support has anyone had similar muscle and tendons removed and what happened did it get better over time or was it crapy permanently I am unable to walk very long and even sitting hurts after a period of time any advice would be appreciated hope everyone recovers fully and gets better
I had acute compartment syndrome in my left forearm. I don’t remember anything. I don’t even know what happened. Lost all muscle in the forearm n lost use of hand n fingers. I’m always in pain from the nerves I assume because it’s always a burning feeling. It’s been almost 2 years and I’m still suffering with pain
I had a fasciotomy surgery on my right arm was in the hospital for 5 months…I’m a recovering drug addict I lost full function in my arm an hand and fingers my hand is stuck in a position that looks like I’m making an “E” in sign language…I am 28 years old an need some advice on what to do ..my surgery was in June of 2016 ..my name is Heather I would be blessed if I could get some more information about this here is my email address alltherimeuniquebabii7373@gmail.com ….I have trouble with everything I burn myself all the time it’s such a relief to know I’m not alone in this …thank u for ur time …
4 Weeks out – Working again chasing bad guys
8 weeks out – back to full ruthless exercise no issues.
3 of 4 done on each leg.
I had compartment surgery on my left leg in November 2015 and due to complications that the doctor did not foresee, I am allergice to disposable stiches, I had an open wound for six months before he would even consider sending me to a wound specialist. I took in on myself to go and they had to wound closed within two months. I have not gone back to that doctor even though I need the right leg done. It was not as bad as the other. I dread going back in. I have started going back to the gym however, I cannot seem to find good treadmill sneakers and by the time I reach 30 minutes, my legs start to hurt and I have to stop for a few moments before starting again. If anyone knows of any, I usually wear something that has memory foam in them, I would greatly appreciate it. Thanks.
Actually, memory foam is not the best support for your feet because it does not give your feet the good solid support that they need. I usaly wear Nike’s and they have been the best as far as support, they have lasted me all track season without any problems, I would suggest that you try something like that.
My husband had compartment syndrome operation on his calf monday had his second operation Friday to stitch it back up. Came home Saturday and now his foot is numb.. is this normal?
Has anyone had a fasciotomy due to developing Compartment Syndrome in your thigh?
I had a total hip replacement in 2013. 1 week after the surgery, i was awoken with the most excruciating pain i had ever felt and noticed my leg was swollen nearly double in size. I couldn’t even walk to get in a car to be brought to the hospital. I had to be transported by an ambulance.
After running test it was found that I had a blood clot in my leg and that possibly caused my compartment syndrome. I had a fasciotomy and stayed in the hospital for about 3 weeks. After 67 staples from above my knee to the side of buttocks and some physical therapy to basically teach me how to walk again, I was discharged.
I went to month of physical therapy.
I still have numbness around my knee and tingling in my toes. I cannot lift my leg while in a sitting position, I cannot raise my leg high enough to put my pants on. If I walk too much my thigh hurts and if I sit too long and decide to get up and put weight on my leg I get a sharp pain in the center of my thigh along with pain running down the inside of my leg from the groin area to about the middle of my thigh. I also have back problems due to walking different to avoid pain.
I visit a neurologist and an orthopedic specialist. Both are scratching their heads.
I’m just curious to see if anyone has been through or is going through the same and if so, what do you hear and how do you function?
I just had the surgery, Suregeon said four week recovery, Four compartments on Both legs. (I think 4 but I only have one inside incision)
I only measured about a 35 however my calves would fail to work after 1 minute of hopping. I also could run for about 1KM before pain set in however I would have shin splints and extreme knots and tightness for weeks afterwards. I passed all my running training to get into my job which was very hard running 2.4k 8 different days.
Best remedy for me was Saunas and stretching in the sauna w/ massage.
Day one – Hospital overnight with drains. Morphine/Severadol/Ibprofen/Panadol
Day Two – Four Don’t remember because of pain killers.
Day Five – Crutching fine Brufen
Day six – Bad blood rushing pain in left leg when first standing. (trick is to sit on edge of bed and let blood slowly pool into leg) – UN-bearable pain when standing would take 15 minutes to warm left leg up enough to crutch on it as it was super tight and did not want to sit flat on ground. I was dumb and went to the mall and crunched around that day. Tramadol/Brufen/Panadol/ice/compression socks
Day Seven – Payback from yesterday (Elevated whole day) Brufen/ice/compression socks
Day Eight – Still resting unable to walk on left leg, right is fine.Brufen Panadol Ice/Compression Socks
Day Nine (Today) – warmed up leg and able to stretch it and walk on it without crutches for a few minutes. Brufen/Ice/Compression Socks
Day Ten – See surgeon.
Pretty bored. Reading all the comments helps. Compartment syndrome sucks but as much as it sucks you have to think there are people that would kill to have it over their cancer/no legs/paraplegia ect.
has anyone who has had the surgery have the pain return?
Hi JP,
My fiance has the same compartment syndrome and about a year ago had the same fasciotomy surgery. Unfortunately, the pain did return and to this day he still comes home from work everyday after minimal time on his feet complaining about his legs. We are desperately trying to find solutions and answers to help overcome his pain. If you or anyone else has advice or has experience in with this situation please contact me. This is a very uncommon diagnosis with very little knowledge.
Thankyou!
Hi there, your fiancé is not alone! I had all eight calf compartments operated on in 2001 and still have pain all the time. I wear compression stockings and it helps. Your fiancé may want to try that. I wish I knew why we continue to have pain. 🙁
– Rachael
I tell doctors the pain is still there and they look at me like I’m an alien. They say you’ve had the surgery it can’t come back. My legs disagree. It’s been a long time too and I’m in pain and sedentary because it hurts so much. I am not sure if I had all the compartments done but I’m sure I had upper and lower on both legs. I’m pretty sure it was all 8 as the pressure was 70 in one leg and 65 in another? Mine was outpatient although it took me a bit to wake up from the anesthesia which scared them. I healed quickly but as soon as my stitches came out I was clumsy and popped an incision which had to heal from the inside out. It was not fun sticking tiny gauze up into my calf twice a day for months. I work in a large building and by the time I walk to the exit and right across the street to my car my legs are burning. Compression socks are a good idea because weirdly I wore them on a plane and my mom did and she hated them but I thought they felt good. Maybe that’s why.
How much does it help Rachael?
Im getting told its nerve pain and to take amitriptyline though im on co-codomol too and it doesnt help but it might help you, pain is so bad sometimes i just jump into bed and try sleep it out. I thought i was the only person because they said the surgery it almost 99.9% success rate with no complications😴
I had my surgery in 2007 and now 10 years later it’s completely returned. Mine is hereditary because it is symptomatic in my niece and she said something about my brother (her dad) I have gained a lot of weight but after the surgery things were so much better for a little while and then everything came back and is hurting again. Someone said something about scar tissue? All I know is I’ve put on weight and I have no clue how to get it off considering I’ve gotten older my metabolism has slowed and it hurts horribly to exercise. I was hoping to have weight loss surgery to relieve the pressure, but due to stupid reasons I was denied but may still have a chance at it. I’m hoping that will help a lot but I still have horrible symptoms and they hurt so bad. I have four scars on my calves in the upper and lower parts on the outside. One was super fun because I popped my incision as soon as the stitches came out. I’m so frustrated and nothing is seeming to help so my father is the one who has it and he also gave me the propensity for diabetes, heart disease, etc. things I could avoid if I could exercise which I love so much. It’s so hard to deal with when you are sedentary because of it. If you find any info please let me know.
Hi JP,
I had the surgery last year and have had pain on and off but lately it is to the point of almost not walking. I am getting swelling around my lower legs/ankles and constantly feel tightness in the upper part of my legs. I had them tested before surgery and was 72 mm-Hg. They only tested the front of my legs and released 2 compartments. I then went back last week and got them to test again as I have had alot of pain lately. They tested only one of the compartments that ended up being 28 mm-Hg. I was curious as to why your scars are so low on your leg as that is where I am getting quite a bit of pain but mostly under my knees on the outsider of my legs where I had surgery. If you could give me any advice it would be greatly appreciated.
Yes ,i have , the surgery was completely unsuccessful
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.
I developed compartment syndrome on July 17 2012 I was found unconscious by my sister I was lying on my bedroom floor my whole body was on my left leg and my left eye was on the floor as well and when my sister got me up she thought that I was having an allergic reaction to something because my left eye was puffy and she asked me if I wanted to to go to the hospital and I told her no so she just gave me some benadryl and helped me get in bed so I went to sleep for a while and woke up around 10 am I had to go pee and so I got out of bed and I noticed that I couldn’t put weight on my left leg and so I hoped to the bathroom and I went pee and noticed that it had turned black and I told my sister and she told me to call 911 my leg had swelled almost to the point where my pants didn’t fit anymore. My eye was also almost swollen shut. My memory from that point is vary hard to remember. I don’t remember the ambulance ride I kind of remember the doctors working on my eye they asked me if I had been in an accident or if someone had hurt me because thats the only way I could have developed my injuries but I told them no. So they continued to work on my eye they had to cut my eye lid and stick a needle in my eye because by the time I got to the hospital my eye was so swollen that it came out of the socket. The next thing I remember is the doctors saying OK YOU ARE GOING TO SURGERY NOW! After that I don’t remember a whole lot. I was in the hospital for a month and I was in and out of surgery almost every few days to remove any dead tissue. But after I was released from the hospital I developed a contracture in my left foot and I was walking on my tip toes for a year and so I had a tendon release. So now my foot is stuck in the position the doctors put it in and my toes are curled under they are stuck like that. But I’m blind in my left eye because of what happened to me that day. If it wasn’t for my cat waking my sister up wanting in my room I may not be here by the time my sister found me my kidneys were failing so he saved my life.
My son also went through a similar situation. He might have been on his right leg for about 8 hours or more before someone found him. Hes been in the hospital for 2 weeks now and they still cant close his wounds due to swelling. His kidneys are still not functioning. How long were you in the hospital? How long did it take your kidneys to start functioning again?
This blog is great. I had my bilateral fasciotomy on both legs last week she they are still swollen and the tops of my feet and the lower 1/4 of my legs are numb 🙁
Weirdly enough, today I got a sharp pain through the lower part of my leg, felt quite nervy. Has anyone else experienced this? Thanks.
Yes, that is nerve pain. I had this for a few weeks after my surgery but it seems to have stopped now.
Yep. I had a fasciotomy on my left leg about 4 weeks ago now. From my knee down is numb, including my foot, except the under side which is normal. Crazy!
I get pains in the top of my foot and in my leg pretty much just in my incisions.
I sure wish I knew when these pains in my foot and the total numbness and tingling were going to end?! I saw the dr. Today and he said 1-2 years!!!! Are you kidding me?!?! I honestly don’t think I can live with this, that long!
I had a fasciotomy in 2013, drywall fell on my leg. The scar on the outside of my leg is a straight line but the scar on the inside of my leg is worse due the wound vac I had for approx 7 weeks, both are 8-10 ” long. I have a lot of stiffness, a lot of little veins showing around my ankle and sometimes pain in my ankle. The stiffness has caused me to overcompensate at times which has caused some issues with the other ankle. I stretch my leg and that can give relief but looking to see if anyone has any other ideas for the stiffness.
My friend had compartment syndrome and had to have a skin graft done because it was so bad that they had to remove most of her muscle from her right leg on out side of right leg on inside of right leg 10″ long scar. On left leg on 4″ scar on both sides . My question is why did they have to remove so much skin if it supposed to only a problem whit the muscles
I had compartment syndrome in 2011 due to an injury and had to have a fasciotomy. My scar is about 8 inches long. I’ve noticed lately that the scar is always warm. There is no pain at all but I am just curious as to why it is always warm. By the way, this is a great site. Thanks.
my surgery was done in two operations, 1st to place vacuums, pump in my leg thenthen 4 days lster to remove it all.
Does anyone else have problem in feet after the surgery? My feet hurt so much even at rest and they get worse after activity.
It’s nerve damage it can take up to a year to heal or maybe even longer I had open compartment syndrome as well and it has been almost 3 months since I had the surgery and I havent been able to run without feeling numbness on the right side of my leg
Hi, i was involved in a car crash, my left leg crushed. compartment syndrome. Now my foot feels so tight ,its going to explode. i guess i need to see my doctor?
Dear CECS;
My surgery was on my right foot that was very extensive. After surgery, ( no cast or boot ) I lay in bed for about 2 weeks in excruciating pain. I have a very high tolerance for pain and being athletic all my life, I just though it was normal and you know you just tough it out. Not so, after two weeks of pain that I seriously don’t think any human words could describe, I had my husband take me to ER, where my DR. performed emergency surgery on my R leg. Due to CS my foot was damaged by nerve issues. There were no words to describe that either.Then I broke my R big toe, then had Achilles lengthening surgery. However, my foot is doing much better, 7 months post surgery. As of today, I still have no feeling in the end of my R big toe. My foot does have tingling when I am exercising, or been standing or sitting for extensive periods. My doctor said it would take 1 to 2 years to fully recover, and then I may still not have total feeling. When I get out of bed first thing in the morning, I have some foot salve that I rub my foot very deep rub with. This helps wake up my foot. My doctor stated a couple of weeks ago, that he thought I would never walk again. He said he didn’t know how I was doing all the things I’m doing now. I told him I know how, it is because of the healing of my Lord and Savior Jesus Christ.
That being said; keep rubbing your foot with oils or foot balms. Make sure you rub it deeply for at least 5 min. At night time when you get still and your foot isn’t, rub it as this will help to calm it down. Keep going and don’t give up. The Lord knows what He is doing, and never forget He has you and will never leave you.
God Bless
I am 10 years post op. I had bilateral fasciotomy all 8 compartments released. I have debilitating feet pain, specifically my left foot. I did have numbness after surgery on that lower leg. I’ve seen 15 doctors and have done and tried everything . I’m trying to get to the Mayo Clinic now. I can’t live like this anymore
I had surgery 11 months ago. All has been well except the bulging of the muscle ( which is normal) however I recently started getting a cramp in my leg every time I stretch. It is a Charley horse feeling and I can bring it on every time I stretch out my leg. Just wondering if anyone else has this problem?
Hi Stacey,
I actually had a very similar thing. Started taking a magnesium supplement and immediately noticed the difference and still get the same thing if I don’t take it for a while. Maybe magnesium will help 🙂
Has any one gotten the botox treatment from Dr. Mcginley from Wyoming? How was the result?
I got the surgery two years and half ago, but nothing worked. Has anyone had second surgery? How was it?
My daughter has been treated by Dr McGinley in Casper, WY with excellent results. She had CECS in 2 compartments in each leg and B Popliteal Artery Entrapment. Artery entrapment was resolved in 2 treatments. CECS required 3 treatments. He is amazing and has pioneered a conservative treatment that is very effective. He treats areas of the calf muscles that are compressing the veins (CECS) or arteries (artery entrapment) to restore normal blood flow. He has a 100% success rate with the artery entrapment problem and I believe 80% success rate with CECS. If you have not ruled out Popliteal Artery Entrapment, that may be your issue. Fasciotomy surgery will not improve symptoms of popliteal artery entrapment.
Oh my gosh I want to hug you all after reading all of these! I am a mid twenties ballerina turned runner (turned barely anything) who has been dealing with chronic compartment syndrome for 7 years in both lower legs. The issue with me is that I also have discomfort and pain constantly not just upon exertion (although intense activity does make it much worse). When I’m extremely sedentary or standing the pain also worsens and feels tighter. Several surgeon consults have advised against surgery even with testing positive for CECS as they’re unsure it would be successful with something else going on. I’ve explored inflammatory diseases, bone scans, MRIs, ultrasounds, neurological issues, have tried acupuncture, massage therapy, physical therapy, foam rolling, nutritionists, orthotics, gait training, holistic doctors etc. Going back to a vascular surgeon next week. Two questions: 1. Has anyone else experienced a non-textbook case of chronic exertional compartment syndrome? What other things were you diagnosed with/did you explore? 2. For those told to “manage” the pain instead of surgery, has anyone tried pneumatic compression devices such as the one from Normatec to help with pain/mobility?
Meredith my story is very similar to yours except I went down the surgical route! I was first diagnosed with CECS at 13 after being a high-level sprinter and had bilateral fasciotomies a year after diagnosis. However my symptoms didn’t improve at all after the surgery and I was re-tested which sure enough showed that my pressures were too high still (above the surgical threshold). I tried everything to improve my symptoms as the surgeon said he wouldn’t operate again; MRIs, 4 different physios, rheumatologists, holistic medicine, accupuncture, foam rolling, re-learning how to walk, orthotics etc.. Eventually 4 years later nothing had been successful and so I had the surgery again at 18. I’m 22 now and unfortunately round 2 was no more successful than round 1 and so I have to find my own ways to manage the pain (and still can’t do any exercise – 50m of jogging and I’m done). Very frustrating and would love to hear people’s suggestions surrounding pain management and alternative therapies!
Hi Bridget – wanted to update you on some things that have helped manage pain this year.. I wonder if you’ll ever look back at this thread, but just in case you do. I cut out dairy in my diet back in February and it has helped curb some inflammation. I’m considering cutting out gluten and extra sugars because when I have them (like during the holiday times) my pain is worse. Also, in addition to self massage and foam rolling which is time consuming and tiring, I am going to invest in Normatec recovery sleeves to help manage when my legs feel really bad. I’ve gone to a local physical therapy spot in NYC to try them out before buying them and I think it would help for ongoing pain management (they’re expensive though.. $1500…) but if I use them at least once a week, they pay for themselves in a year. I no longer am a long distance runner, but have been cycling, playing tennis and boxing instead which cause less pain than cranking out 15 miles. Hope you’re feeling better!
Did you our insurance cover Botox injections? How are your daughters symptoms now? Is she still pain free? My 19 year old had bilateral fasciotomy all 4 compartments 2 years ago with very little success. Recently re-tested and diagnosed AGAIN with CECS.
Hey what was the cost?
Hi Amy,
For me there was no cost as it was under the public health system. Where are you based? Perhaps some of the other commenters can offer some insight 🙂
my total for my fasciotomy was 115,000.00
Susan, what country are you in and if you don’t mind me asking what currency was the 115,000.00