First I'd like to thank you for the comments and apologize for not posting an update sooner or answering some of the questions you've posted.
I wish I could say that my legs are now perfectly healed and that I am back to doing the activities that I love so much. At one point I was very hopeful that the procedure worked as planned. I was able to actually put on my now old and somewhat dry-rotted inline skates and actually skate several times around my block. A HUGE step in the right direction. My endurance was completely shot and my skates needed to be replaced, but I was so hopeful that I could be normal again.
Fast forward to December and our first ski trip of the season. I was in horrible shape for skiing and the conditions were not great. We were rarely ever able to ski more than one run before heading inside for a rest/cocktail. I guess it was the 2nd or 3rd day on the slope when I started getting painful sensations in the back of my calves. The fronts seemed OK, which was good, but ultimately I was nervous that the one compartment that wasn't released during my surgery was acting up. It was during our second in February when I started to have full blown attacks forcing me to stop on the slope and remove my skis. This continued for the rest of our trip. It was obvious that the fourth compartment needed to be released.
I put off going to see my orthopedic surgeon as long as I could, but I started to have attacks on the treadmill and realized that it wasn't going to get any better. I was relieved when the surgeon didn't require another pressure test and was willing to schedule surgery based on my experience with the syndrome. He did warn me quite a bit about the additional muscle trauma that will occur because the remaining compartment is the deep posterior and much harder to access. He warned that there would be a higher risk of nerve damage and that recovery would likely take longer. Things I didn't necessarily want to hear. But after putting it off as long as I could, I now have my second surgery scheduled. It is less than a week away.
I've re-read through this blog and am not looking forward to the recovery, but I hope that this will be the final step in getting me back to where I was.
Thank you again for your comments and support.
I too have a remarkably similar story (35 - 45 mm Hg at rest in all compartments) but opted out of surgery. I have been living with this for ten years now. Two intracompartmental tests with same results. I just came across your blog and have read every word eagerly. I am considering surgery, but not sure how much muscle nerve damage has occurred. Pressures are off the charts when active. I have become sedentary aside from gentle yoga, primarily stretching. B/c of so little info ten years ago, and my doctor's ignorance of the condition, I have been managing on my own. Would love to know what your doctor told you would happen if you did not do surgery. In light of the ongoing pressure you and I both experienced, we really fall somewhere between the definition of chronic and acute. Only now is there adequate info regarding long term affects to tissue and kidneys. When I opted out of surgery, I thought my worst case scenario would be high blood pressure, possibly diabetes, and loss of muscle tone - all off which my ego thought I could control. I became aware of ischemia and neuropathy only years later through internet research. Now I am understanding the possibility that I may have, or will have, dead tissue, and possibly kidney problems over time. Pretty serious stuff, but again - not being managed by doctor. I have recently considered surgery (as I have many times - but always back down) and would really benefit from hearing how the last compartment release went. I was told exactly what you were told by way of that last part being difficult with little success. Also, I suspect I have had it in my forearms for quite some time. Not sure how to even deal with that one. I am currently looking into Tom Myers Anatomy Trains for understanding of the fascia. Many people in the yoga world have suggested myofascial release. I can't afford to give myself these alternative therapies, but not so sure about surgery being truly effective. I am terrified of the longterm affects of this condition. It does not fare well on any level. I am curious about your experience - and I would guess you would be about mine. I am sure you have probably wondered what it would have been like to opt out of surgery. I don't know you, but you share one of my greatest life challenges... One that few people can even wrap their head around. Sometimes I actually have dreams about going for a run!
ReplyDeleteHi Rin! Thank you so much for your comment! I can certainly relate! Unfortunately, I typed up a long response to your comment describing my second surgery, but somehow, it was lost. I will ultimately type it all up again as a Progress Report for the blog, but wanted to respond to your comment as quickly as possible.
DeleteBottom line...the second surgery WORKED!!!!! Recovery was actually somewhat easier the second time around. Maybe because I already knew what to expect or maybe because only one compartment was released the second time around. Either way, I was back to status quo much more quickly the second time around.
And the best part is that my husband and I went skiing in December, 2012 and I was able to ski without having attacks! My endurance was/is shot and I'm working on regaining that now, but being able to do what I love without pain makes the entire journey worth it. I will admit that I have some minor superficial nerve damage from the last surgery (in the legs only), but nothing at all that bothers me to the point that I wish I hadn't gone through with it.
Again, I will post a more detailed update, but I didn't want to leave you waiting on a response any longer than I had to. If you have any questions at all, please feel free to ask. This condition can be a lonely ordeal. Even with the immense amount of information we have access to these days, actually finding someone with a shared experience is rare. Best of luck to you!
Can I also get in on this sidebar since I too am a member of the “chronic to acute” spectrum club? I’m actually tearing up over your comment Dawn that stated that “this condition can be a lonely ordeal”. I don’t think there is anyone that knows that more than I do. I’ve been living with my “leg thing” for over 30 years and until September of this year, I did not know what it was and it had no other name. Not for lack of trying mind you. I’ve been to rheumatologists, orthopedics and even had artery tests done to rule out claudication from pulmonary artery disease. Not one doctor ever said CECS and after enough time goes by you start to forget what normal is vs. what really is abnormal. I can give you a window Rin into what not doing something about it looks like. I’m almost 52 years old and although I’ve kept active, I’ve never been a serious athlete in any sport or recreational activity. My CECS is brought on by walking. Just normal day to day walking that involves any distance beyond a couple of blocks or any pace that is faster than a 90 year old with a walker. Standing in a checkout line and remembering you forgot to get frozen peas and walking quickly to get them? Ouch. How I wish I had a sexier reason than that like it takes me away from inline skating, running a marathon, skiing with my husband but no I can’t just have a nice walk with my friends without eventually asking them to please stop and rest with me. It has been humiliating for me for 30 years. I thought people must just be thinking I was just out of shape and lazy. They had no idea the extent to which my head and heart was walking faster than all of them for longer distances because I LOVE to walk and I am NOT lazy. I just can’t walk very far without really paying attention to my “leg thing”. Well in September after nearly killing my legs on a trip to NYC to move my oldest kid to college and doing my best to push through the pain to keep up with the “common Moms” from my family I knew that no, this simply cannot be normal and I’ve GOT to get to the bottom of what it is. Fast forward to finally getting to the right doctor who suspected CECS and the pressure tests where I too registered in the 100+ range in the anterior and lateral compartments and I’m having surgery at the end of February. I’m absolutely terrified of the surgery not because I’m wimpy about the pain but because what if it doesn’t work? I have to be able to walk. I can’t just decide to switch sports because my “sport” is just day to day life. I have just regular functioning on the line that’s all. I just want to be able to walk back quickly to grab those frozen peas without thinking, “oh crap… there it goes again”. So Rin, there you go. This is what not doing anything about it can look like after 30 years when you are a “chronic to acute” spectrum club member. Thank you Dawn SO MUCH for writing your blog. I’ve read all of it and all of the other one that your profile referenced plus everything else I can get my hands on in case there was another way out. There isn’t. I’ve got to try. I am so glad that you’ve had a great outcome even though the journey was long. Here is hoping I get the same. Maybe I’ll take up skiing to celebrate! Best to both of you.
ReplyDeleteand that is "come on Moms" not common moms. :)
ReplyDeleteHi Dawn,
ReplyDeleteI found your blog while researching compartment syndrome; which I may end up with, according to my Army docs.
I was deployed and wounded during a firefight 2 years ago, which resulted in 1 fascial hernia on my anterior and 1 on my lateral compartment (about 3cm). I have to wear a sleeve any time I'm being active or walking/standing for an extended period of time, due to the herniation and pain associated with it. So, I wanted a mesh to be placed over my fascia so that the muscle won't herniate.
My question for you would be how the fasciotomy has affected your anterior compartment pain? I'm assuming the incision was long enough to where your muscles din't herniate?
Thanks,
Jenna
Hi Jenna,
DeleteSorry to hear about your injury. The incisions in my skin for the fasciotomies are only a couple of inches each, but the fascia itself was completely incised from bottom to top (ankle to knee) in each of the four compartments. I am overjoyed with the end result. My pain is completely gone. I can now skate, ski, run and do just about any exercise I'd like. I hope that you are able to work with your docs to find a solution to your problem.
Thanks,
Dawn
I had the anterior and lateral compartments released on both of my legs in December 2011, with some relief, only to have symptoms return once I started amping up my activity in May 2012. I was nearly to where I was pre-op by July 2012. I had the other two compartments released on both legs in October 2012 and it has been an uphill battle ever since. I have trouble even climbing a flight of stairs (not for being out of shape) and have found Lidoderm patches (prescribed by a pain management specialist) placed along my anterior compartment just to the outside of my tibia and that has been helpful for relieving some of the pain/fatigue. Also, as suggested by PT, eccentric calf lowering - stand on tip toes, shift weight to one leg, and SLOWLY lower. Repeat 3x sets of 10. I have been making slow, but relatively steady progress, but I am still struggling with daily living. Good luck to all of you.
ReplyDeleteHi Jennifer (and Dawn)
ReplyDeleteI'm an orthopaedic surgeon in Australia, and treat a lot of Australian soldiers for this condition, so I'm always glad to come across an extra resource to tell them to read!
I would comment about Jennifer's problem; it may be different if yours is post traumatic, but if you were getting an incisional muscle hernia after having a release for CES, you definitely DON'T patch the hole with mesh as you will either cause an acute CS, or cause the original CES to recur rapidly. You actually want to repeat the fasciotomy, as the hernia is caused by a region of the fascia not reforming properly; it almost always sits under the skin incision.
Hi Dawn,
ReplyDeleteI just had my surgery last Wednesday and had all 4 compartments released. I can't imagine having to go through that again! I never post anything on blogs, but I wanted to thank you for telling your story. There isn't a lot of information out there for CES and it helps to read about other peoples experience/recovery. I hope your second surgery was successful!
Hi Dawn,
ReplyDeleteFirst, thank you for your blog! I am french, and here in France, compartment syndrome is not well known :10 years I suffer when I run, 5 years when I (try to) practice downhill skiing (without crying), and 2 years just by walking..., and only 6 months I have a diagnostic. But, both doctors I have seen are aware about chronic CS due to running activity, but none of them understand why I suffer when I ski.(one specialised in sport conditions, and a surgeon specialised in compartment syndrome). I am glade to see that I am not as rare as they say. I will have my compartment pressure mesured next wednesday, but it seems already obvious that I will go through surgery. Like you, pain during skiing is much more unbearable than when I run or walk, and all the compartments are affected when I ski, whereas only the anterior and lateral compartments provoke attacks when walking or running. So I am also afraid than the test won't be significant of the real pain I feel when I ski... I hope the surgeon will listen to me...
I have read a lot about how not efficient is the procedure, and I am glade to see that it runs well for you.
Now, thanks to your testimony, I know I will impress upo, the surgeon to have all my compartments incised.
I also have a question for you, or other people who can read my message. Do you loose feeling in your feet when you have an attack? Because both doctors think that I have another problem linked to compartment syndrome: a popliteal artery entrapment, and they explain my pain when skiing by this syndrom,because of the loss of feeling (it could sounds paradoxical i know, but yes, I don't feel anything, but pain).
Thanks for reading me, and sorry for my frenchglish!
Hi Lauriane, I have symptoms similar to yours. I had all compartments incised. I'm not sure if the surgery worked or not. I can do more than I did before (jumping, hiking, walking long distances), but I'm not sure about running yet.
ReplyDeleteI haven't had any of those tests the surgeon just booked me for surgery based on what I've told him . Surgery is in one week dec 21st!
ReplyDeleteHey, how are you doing now? Was the fourth the trick? Why didn't they do all four in the first place?
ReplyDeleteHi Dawn, thank you for sharing your experience. I'm wondering if you've experienced any muscle deformity with the surgery? I had the same surgery and unfortunately, I've experienced muscle deformity in both lower legs. It's been 23 years and I can't seem to get past the physical appearance of my lower legs post surgery. Also, I have felt symptoms post surgery - numbness in my feet, stiffness, etc. I felt scare tissue for a long time as well.
ReplyDeleteThank you, Lisa