Knee problem is progressing...but excruciatingly slowly. Bit by bit every week I have more confidence in its stability - Played a hard game of basketball the other day, and felt pretty great (Compartment Syndrome-wise) - Still have not attempted long distance run, but hopefully will within the week. Either way, a good, hard game of basketball was not possible pre-surgery, so that is encouraging. Still going to Physical therapy for the knee though, but will hopefully be done in a couple weeks...Otherwise, no complaints - My back has been stable for the longest period in a year, and my functionality in every day life (and my disposition) have improved greatly - I hope the progression continues
ALSO - Over the course of my posts, there have been a lot of people who have described just being out of surgery and in the early stages of recovery - How about some updates? Comment on this post with all that you want to share about your experiences; I guarantee you many people will find it helpful!
Glad to hear that your knee is (slowly) getting better, and that you haven't had any CS symptoms! That's really awesome.
ReplyDeleteI finally got my stitches out on Friday, and I'm letting the incisions dry out a bit before I can go about my life normally. I got this obscene bruise on my leg, directly beneath (and somewhat on) one of my incisions. It ended up blistering, and it's hugely ugly. I'm mostly worried about it leaving a scar; I only planned on the four incision scars.
I'm really interested in knowing who you went to for PT. I've got my referral for PT, and while I could definitely go to the MGH folks (and my MGH surgeon would prefer that), I live closer to Longwood and will have a very busy schedule starting September 1. I also am switching insurance companies at the end of the month and need to make sure I have PT options. If you don't mind, could you let me know who your PT folks are? I've emailed you before, when I was looking for a surgeon, but never heard back from you. My email is sabend (at) gmail (dot) com.
It is quite positive to hear that you are doing so well. I will be 3 months post op tomorrow. I haven't started doing any proper sport/ running yet. As my feet were giving me a lot of grief (swelling just doesn't want to go) have been keeping up with the physio and cycling to work. Think I might attempt a jog this week but it is a bit daunting. Did you have a lot of swelling in your feet post op? and when did you start running again?
ReplyDeleteI am excited I found this blog. I had surgery 2 days ago and have begun the recovery process. I had bilateral release on both legs. The worst part so far has been the anticipation the morning of the surgery. The night of my surgery I needed to be carried around, but I was doing a lot of sleeping so it was okay for the most part. Yesterday I was able to put weight on my right leg and move around with crutches successfully. Today I worked on using my left leg more with one crutch. Its a slow process getting around but my doctor advised to start walking as soon as possible, I think its going well. I have already eased off pain medications (IB profen working just fine) and start physical therapy in 4 days. I have yet to see the benefits in regards to running, but judging by your experience and the posts of others I think the surgery should be well worth it. Thanks for this blog!
ReplyDeletewould love to hear how your longer run goes!
ReplyDeleteMy daughter is 16 and had 4 compartment release on both legs on Aug 18, 2011. She had an good recovery to this point and did everything by the book. She started having some knee pain and did reject stitches in 1 leg. Dr. released her last week- 6 weeks post-op. She had biked at week 5 but went right back to the soccer field- granted she is not doing hard sprint or cutting and is trying to ease back into it- her shins are sore. My fear is this will come back. Could this come back is she is pushing herself too fast??
ReplyDeleteGlad to hear that people are doing well for the most part. I had an absolutely wonderful doctor, he was the yankees orthopedist. Three other dr's told me I had shin splints (im a runner, I knew it wasn't shin splints). My surgeon listened to my symptoms and agreed it wasn't shinsplints. I never got the needle test done bc the doctor put me on a tredmill and could not get over the huge rise in pressure so quickly from walking. Within six mins. the outside of my shin's were as hard as rock and I was losing feeling. I had all four compartments on both legs done. The recovery was slow but I took my time. I slowely started excercising again and was doing well, however, I'm starting to get the same pains again. I stopped excercising and plan on trying again soon. I had no idea that its possible for a fasciotomy to fail. Has anyone had this happen? It's been three years since mine and the pain returned about two yrs ago(not as bad though) and I feel like my circulation is messed up. My hands and feet are constantly cold. Does anyone else have these issues? Please help, this is a great site and Im learning so much!
ReplyDeleteI had a bilateral compartment release, and four done a month ago thursday. So far my legs feel lighter, less dense... i've experienced a lot of atrophy, and my shins are shrinking. I think i'm losing muscle through the recovery process, but also my muscles are no longer bulging out of my legs. Although I still have a long ways to go, i'm confident that the surgery will help a lot. I used to have a lot of pain with going up stairs and I have surgery pain, not compartment syndrome pain. I prayyy that i will be able to run pain free, I will start in a few weeks. I don't have much numbness, just some around my ankle and different spots on my leg. the doctor informed me that some nerves were most likely cut and to not fear, and that they will grow back normally. I purchased compression socks which cut down my swelling greatly ( i suggest anyone who has had this surgery gets some!) I have had the compartment pain for 5yrs and cant wait to find out the results..or am i dreading it....
ReplyDeleteHey Sam! I appreciate you sharing about your CS surgery and recovery. I’m scheduled for the needle pressure test this Friday. I’m curious how you are progressing at this point. Are you able to resume running? Any restrictions? Are you further ahead than before the surgery?
ReplyDeleteHi, is there a way that I can email any of you about this?
ReplyDeleteI'm 18 and in the military and I was just told yesterday I have it (after 4 unsuccessful months of physical therapy).
I have a stress test scheduled from next week, so i'm trying to find everything about it i can in case i end actually having it.
I'm leaning towards getting the surgery.
My email is bluepenguin024@gmail.com
I've suffered from compartmental syndrome for 15 years. I had a fasciotomy 10 years ago, and while at first it seemed to help, my symptoms returned and have persisted ever since. I had two compartments opened on the front of my shins, and unfortunately it did not solve my problems. I see a lot of people posting just after surgery, but I'm wondering if their are others who find that their compartmental syndrome was not cured by surgery?
ReplyDeleteI also spoke to someone who had the surgery twice, and her compartmental syndrome was not cured. Given her and my experience, I became pretty skeptical about the surgery working. I guess I want to know if other people long after the surgery have (or have not) had compartmental syndrome symptoms (pain and numbness) return. Long Term success or failure stories like mine would be helpful.
ReplyDeleteI've had symptoms in my left leg for almost 4 years now (pain, tightness and a lump on my leg every time I ran) and was just diagnosed with exertional compartment syndrome yesterday. Although I am not a competitive runner, I absolutely love running. I was going to sign up for my first half marathon at the beginning of the summer but am no longer doing it because the last time I tried to run the pain was so intense I couldn't even walk. I'm really confused on what I should do (to have the surgery or not). I'm only 20 and can't imagine not running for the rest of my life. I've always wanted to do a marathon as well and was very excited for my first half- marathon. However, I don't know if the surgery is worth it or not? It seems from a lot of other posts that the surgery did not work.
ReplyDeleteI have had compartment syndrome for 20 years in my calves all compartments. I was terrified of surgery and just lived with it. I then started lifting weights a few years ago and it improved my compartment syndrome in my legs, but then I got same symptoms in both forearms. I haven't been officially diagnosed in forearms, but very confident it is the same thing. There must be something with some people just having tight facia. I am not convinced that surgery will resolve it in the long term. Curious as well to hear any long term success stories from the surgery. I have also been doing active release therapy in an attempt to help.
ReplyDeleteDid you have "exertion compartment syndrome" or just "compartment syndrome" The reason I ask is because my son who is 16 is getting ready to be pressure tested for exertion CS on the 31st?
ReplyDeleteIt's only on one leg but after readying your entire blog and comments it seems like they may want to do both as a precaution.
I also wanted to ask about the stretching exercises. Did the Doctor say that if you had stretching the calves more often you may avoided the CS? just curious.
I am a 21 year old female, and have been dealing with compartment syndrome related problems since I was about 17. Played field hockey, softball and swam in high school. After last FH season in high school i took a few weeks off from exercise to give my body and break and when I went back to running I started getting the pain, swelling, tight feeling and eventually foot drop. I had the pressure test done and was borderline, but went ahead with the surgery. I had the anterior compartment of my lower left leg released. Only two scars, about 1.5 inches long each. Took it easy for at least 4 weeks as instructed, and was back at school walking the next week.
ReplyDeleteI have not been able to run more than 1.5 miles TOPS since 2008 and it is killing me. I used to hate running but of course now thats all I want to do. Cycling and aerobics just aren't the same. I've had my circulation tested, multiple x-rays and MRI's, and seen all kinds of doctors. As of now I am seeing a neurologist who thinks it is nerve damage resulting either from the surgery, or trauma from the swelling in the compartment. I am on to the next attempt at treatment which is: weekly shots of vitamin B12, and a compound cream containing various medicines, put onto the area 3 times a day. Unfortunately I had an allergic reaction to the cream so I am in the process of determining the cause of that reaction, and narrowing down medicines.
If anyone has any advice, words of wisdom, anything I'm willing to listen. I was supposed to play college field hockey and this has knocked me out of sports completely. My goal is to complete a Warrior Dash this coming summer. This is a tough battle and any help would be appreciated! Please email me: jessicacklein13@gmail.com
Thank you!
Jess
Am 6 days post op bilateral anerior/lateral release. Have my post op visit in 9 days. After reading all the comments I have come to realize I am having a normal recovery, thank goodness and thank you to all. I have had CECS for 3 yrs or ? more ( had 1st release 30yrs ago)I am so worried the symptoms will return. My pain was with every type of excercise including swimming. Is there anything known to help prevent re developing CECS ?
ReplyDeleteI am a 21 year old college cross country and track athlete. For the past 3 years I have had to sit out of many meets due to supposed "shin splints." My trainers have suggested that it might be compartment syndrome. I cannot run more than 800 meters without an odd tingling and numbness showing up from my knees to my toes . The last time I ran was 4 days ago and my legs still feel tight, my shins occasionally throb, my legs constantly feel weak, and my feet are freezing. I've been seeing an orthopedic doctor, who originally thought of compartment syndrome, but ruled it has shin splints instead. I am waiting to hear back from him, so in the mean time, can you recommend anything I can do to make my legs feel better? Just keep resting? Does icing help? I am currently taking 500mg of Naproxen 2x a day. Do these symptoms sound similar to what you experienced or have read about others experiencing? Your input would be great! Thanks!
ReplyDeleteAli, My doctor did a nerve test pre and post running and found one nerve that was almost completely shut off. This lead to an MRI post running in the parking lot so they could see the swelling and verify it was CS without the pressure test. In his opinion the pressure test was very painful and not always accurate depending on the tool and doctor.
ReplyDeleteI did my right leg at the beginning of 2011 and my left leg about half way through. I have a very long scar almost the entire side of my leg but it is fading. My doctor was sure to cauterize and remove some of the facia to ensure it does not grow back.
Recovery was better than anticipated but I took it slow. Now I am refereeing lacrosse games running about 6-8 miles in a day.
Pills only go so far and over time you can build up a tolerance. Don't be shy to get a second opinion and ask for other tests. I saw a second doctor to make sure they came to the same conclusion (which they did after trying some expensive shoe inserts for a trial)
Had surgery in 2009 (3 compartments) with much success and no symptoms afterwards. Until now. Started new exercise program (bootcamp not running) and have started feeling tightness in my left leg that is lasting longer every day. Can you have surgery twice (not that I want to)? Other thoughts? Have folks had symptoms come back post surgery?
ReplyDeleteThanks for the blog - very helpful!
I had surgery in Oct 2009 and it took me many months of recovery to start feeling better. But I had really slow recovery including ongoing swelling, so the physio decided in early 2010 to change tact... He put me onto a vibration platform and within a week I saw more improvement than I had seen in a month or more, and that was 2 x sessions of 30-60 seconds on the vibration platform!
ReplyDeleteThis improvement continued and I stopped needing his care within a few weeks of that, but decided to buy my own platform to continue the improvement.
My trigger for the compartment syndrome was Endurance Horse Riding. I had done it before I had twins in ‘06 without issue, but after returning in ‘08 I had continual pain even caused myself nerve damage by riding through the pain and discomfort.
I went back to riding about 2-3 months after the surgery but still with the familiar swelling, numbness and all the rest... wasn't until after I started using the platform that I saw any improvement there too. I ended up stopping riding by May that year, but by July I needed to do something for my health and fitness. I'd put on a lot of weight due to inactivity and my back was playing up (chronic underlying back issue from car accident when I was a kid).
I took up walking and when I got bored with that, started to jog. I had some leg pain, but the break from riding + odd sessions on the vibration platform seemed to have let my leg heal and improve on its own. I started to wear compression pants to exercise in, and it was the best choice I could have made. Either BSc or Skins seem to work best for me. They need to be the proper TIGHT brands, not the 'fake' Skins that really don't provide that much compression.
I got into a rhythm of getting on the platform for 2-3 mins before going for a walk/run, gradually increasing the amount of running compared to walking, and ALWAYS using the platform afterwards (building up to a few mins at a time and a total of 10 mins after each run).
By October I did a 6km fun run and I probably ran at least 4km of it... and for the most part, without compartment pain.
I kept building up running to the point of easily doing over 10km in the new year without ANY compartment pain.
My physicians have been amazed as they have not seen anyone recover from it like I have done. They suspect that new blood vessels developed in the muscle to bypass the problematic compartments and that has allowed me to gain such fitness without pain. Remembering I had surgery only in one leg, and I did have CS in both legs....
The interesting thing comes... I haven't been able to use the platform in 5 months... between moving house in January and then at the start of February finding out I was pregnant with baby #3... viola, instant stopper for the platform... but I've kept running. I do 6-10km per run and I try to do at least one, if not two runs per week, sometimes three. I've been mixing it up with horse riding again and have had no compartment issues...
...until now. I'm 17 weeks along and the leg which hasn't had surgery has started to ache in that familiar way, during and now after I did a lot of walking yesterday in new shoes. I can't use the platform now (not safe in pregnancy) so I'm hoping it is just a one-off care of the shoes!
Anyway, if anyone wants to read up on my journey beyond what I've written here, you can...
http://beatingcompartmentsyndrome.blogspot.com.au/
I honestly think that MOST people who have it could see benefit from using compression pants/tights like Skins and from using one of these high frequency platforms. I've even converted my hubby who is the biggest sceptic around. He uses it for general recovery after his bike riding and other exercise!
I would love any advice ayone is willing to give..our 9 year old is having bilateral fasciotomy Tuesday. She has Exertional Compartment SYndrome and after running literally crawls because if the pain. Within 10-15 minutes she can no longer feel her lower legs!
ReplyDeleteMay I suggest that those of you having recurring symptoms get checked out for Popliteal Artery Entrapment Syndrome. Very similar symptoms and is often misdiagnosed as Compartment Syndrome.
ReplyDeleteHi everyone, I feel very luck to have stumbled into this blog...thank you. Earlier this week I found myself contemplating suicide b/c I feel I have lost the physical and mental strength to deal with the pain on a daily basis. I am considering writing a book about my experiences b/c I am trying to come up with ideas to get through the low I am currently experiencing.
ReplyDeleteI am a 30 year old female that has lived with compartment syndrome for ten years. I have always struggled to find any thorough research on the topic...90% of the medical websites state that surgery fixes the problem. That has not been the case for me.
I competed in running for seven years and wholeheartedly loved the sport. I was diagnosed with shin splints for nearly two years. I attempted to run through the pain (I was on scholarship and feared losing it) and I am quite certain that has resulted in tissue death and nerve damage.
In 2003 I had the pressure test and my doctor encouraged me to have the bilateral fasciotomy as soon as possible. I had two compartments cut. Having all four cut was not presented as an option. I was very committed to following my rehab program to the T and was on the elliptical trainer by about week 6. My lower legs felt very tender, but I was not experiencing the burning. A year after the surgery the symptoms returned. I cut back on the workouts and tried to add more swimming and biking. I found a rehab clinic that specialized in running injuries. I was there for 6 months and did not experience any improvement. In 2007, I went to a different orthopedic doctor and he immediately said that a second surgery is your only chance. I fear attempting the second surgery b/c at least I have mountain biking. I still get symptoms on the uphills, but I can get a descent workout.
I definitely have good weeks and bad weeks. I can not figure out what the difference is. Yesterday I had such impaired function that I could barely operate the clutch in my truck b/c I really struggle with dorsiflexion (pulling toes toward the shins). However, the week before I had a couple of really fun days on the bike.
The other struggle I have had over the past four years is no health insurance....minor details. I did find a PT I had success with as far as managing pain on a daily basis. She helped me strengthen my glutes, quads, hamstrings, and core to essentially bypass my shins.
Best Wishes to all of you.
tiffanymgregg@gmail.com
I feel your frustration Tiffany - Any updates? Is insurance still a major obstacle?
DeleteI posted back on Oct 2011. My 16yr daughter had the bilateral release 1yr ago on Aug 18th. Going back to the soccer field 6weeks out was painful and not recommended. We backed off and went through physically therapy and were 100%ready by Feb- 6 months post-op. She has had zero pain(aside from the still annoying knee thing) or issues and is playing a fabulous game of soccer- even was recruited to play college! This surgery was the best thing for my daughter and a complete success.
ReplyDeleteMy son is 17 and has been recruited at major colleges for scholarships in football. He has been diagnosed with CcS. He collapsed at pacitce when his entire body became ridged . He is now in the hospital for his third surgery. What are the odds of him making a complete recovery?
ReplyDelete