Thursday, March 31, 2011

Compartment Syndrome Blog - Let's Get To The Bottom Of This


Wow...where to begin. The last year has probably been the most frustrating physically I have ever encountered, and it's entirely possible that it all stemmed from one condition; Exertional Compartment Syndrome. When I was first told I might have the condition bilaterally, I did what most people looking for answers do - went on the internet and attempted to find out as much about the condition as possible. It was quite disheartening, though, when I slowly realized that this was still a rare (if not rare, then at least under diagnosed) syndrome, and there was a significant dearth of helpful information on the subject.
Basically, I felt that the exertional CS content on the web consisted of two different but equally flawed sources of information: 1. Summaries about the condition on sites like wikipedia, mayo clinic, emedicine etc. that would give the standard physiological background, list of symptoms, and then treatment options. Many sites would actually claim (incorrectly) that most cases of CS could be resolved non-invasively through PT and the like.
The second source of incomplete information were sites like runners forum. These, in my opinion, were more helpful than the standard info sites, but still lacked the specificity and detail that I would have liked to see in order to more accurately assess my options.
There were, however, a couple blogs about the entire process, and it was these that I found the most helpful, as one could actually see if progress was made post-surgery (and if so, what exercises/PT was instrumental to the progress), or if complications arose.

Unfortunately, though, I found comprehensive CS blogs few and far between, so I promised myself that after surgery I would try to blog my progress, and in the process, maybe allow a couple readers (if there will be any) to glean a little more information about it, and also, possibly attract fellow post-op CS patients who could share any nuggets of information they deem helpful. I got my surgery yesterday, and my first blog post will merely just detail the last year of my life as pertaining to CS, and then I will provide periodic updates, which will be as detailed as possible about my recovery. But what I feel is of paramount importance is for this really to be interactive. Even if I detail every thing about my CS process, that is still only one experience; what will make this blog truly helpful is if people who have had any sort of CS ordeal to detail their respective challenges and successes in DETAIL. Don't be afraid that by going into too much detail you will begin to bore readers. Believe me, people who have made the effort to come to a site like this want all the information they can get.
Much love to all,
Sam

16 comments:

  1. Hey Sam,

    Just wondering how you got on. I am in the same position and need to have a bilateral fasciotomy. Am considering the benefits/disadvantages and how extensive the surgery is. Any further comments would be welcome.

    John

    ReplyDelete
  2. I am currently going through testing to see if I have chronic compartment syndrome. I competed in a walk this summer and my leg swelled and was really tight. My muscle felt like it was constantly flexed. I know how a numbing sensation down the side of my shin, on the top of my foot, and on my arch. It feels like my leg and foot is asleep. Very sensitive to touch. When I put an ice pack on my leg, my foot feels like it should be ice cold. I feel like I am wearing a wet sock and the top of my foot feels like an open sore. I have had MRIs, xrays, a nerve study, back studies, etc. My back is now hurting ALL OF THE TIME so much that going to the bathroom has become a challenge. Friday I have a compartment test but I am worried that 10 minutes won't be enough time for the swelling to return. From everything I have read, I am pretty confident that I have compartment syndrome. Just curious about other symptoms you may have had AFTER you were done exercising.

    ReplyDelete
  3. I was diagnosed with compartment syndrome junior year of high school, had all the tell-tale signs, symptoms, pressure-readings, etc. Unfortunately, the surgery did not do too much for my numbness and pain (had bi-lateral release, both lower legs). I hopped from doc to doc trying to get answers, only to have them shake their head and tell me there's nothing wrong. Recently I developed heel pain and went in to a new PT to get it checked. She diagnosed it as a back issue, and we discovered i have a bulging disc - from the look of it, its been out of whack for awhile. She bore me the news that turns out I didn't have CCS, that those symptoms also related to my back. SO, for anyone diagnosed with CCS, please see a PT or doc about their back first. The compartment release was a long and painful process I would not wish upon anyone! From what I've seen, the compartment release doesn't even fix the issue for most people - perhaps its because most of these cases are not actually CCS.

    Best of luck to all those searching for answers, I know its a frustrating process.

    ReplyDelete
  4. I have had compartment release in 2002, 2010, and in a few weeks. Also, in 2011 I had popliteal entrapment release. After this next surgery I will have had every possible part of my lower legs released, all as different times as they all turned bad at different times. For those of you who are thinking about having the surgery done, I can say for a fact over and over again, it is worth it. Right now I am to the point there my legs are tight and in pain most of the day and I cannot wait for my surgery date. Good luck to all of you out there who are also going through this.

    ReplyDelete
  5. Hi all,
    For those of you who were successful what surgeon did you use - are you willing to provide a name. I had surgery in Boston about 8 months ago and it appears not to have worked. I need a second opinion.

    Thank you.

    ReplyDelete
  6. Which doctor did you go to?

    ReplyDelete
  7. Dr Turnipseed at University of Wisconsin, Madison -- appears to have alot of experience with Compartment Syndrome

    ReplyDelete
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