It's been a long week. I saw Dr. Slauterbeck last week to try and begin piecing together what is going on with my leg. First, we ruled some things out. Despite some pain around my tibia, I don't likely have a stress fracture. Dr. Slauterbeck feels confident that the release was successful and that he opened the compartments up so extensively that a recurrence of CS is almost impossible. What we did decide on was that something happens when I'm running that causes an interference with a nerve, likely the peroneal nerve. To get more information on this, I was scheduled for a dynamic EMG, which I had today with Dr. Zweber.
For those who haven't ever had an EMG, think serious poke from an electric fence, at various places along your leg. It's not painful, per say, but it's not pleasant either. We started by establishing a baseline and tested me at rest, both with the electricity and with some strength exercises. Then I headed to the treadmill to get tested. The drawback to this, of course, is that I've never had symptoms on a treadmill. I ran for 40 minutes until my foot felt like it was flopping around and starting to go numb. Dr. Zweber and I hurried back to the exam room and he repeated the EMG. So what did we find?
The good news is that there is not a trap at the fibular head, as we had suspected. I have some tenderness in this area, but the EMG seemed to suggest that the nerve was happy and free here. As we move lower, however, a trap seems to exist just below the lateral incision. This explains the eventual numbness and inability to control my foot while running. Basically, the sensory feedback that should be coming from my foot as it strikes the ground is getting garbled and my anterior tibialis muscle, ankle stabilizers and toe muscles don't know what to do to coordinate movement.
So what to do? Dr. Slauterbeck and Dr. Zweber need to put their heads together and figure out what the test results and my symptoms mean, what the solutions might be and what the chances of success are with those solutions. As Dr. Slauterbeck and I discussed last week, a nerve trapped up by the knee would be a far easier (as easy as nerve surgery is) than a nerve near the ankle. For me, the location is also complicated by the vast amount of scar tissue found in the area and the incision.
hi! i've been following your blog for a while now as a fellow CECS sufferer. i too had compartment releases (all four on my right leg on jan. 14 and all four on my left leg on march 4) and i too had trapped peroneal nerves in both legs, which my surgeon suspected before my surgeries and was able to confirm his diagnosis and free the nerve during the release surgery so i didn't have to have more than two operations. it's funny because as i was reading this post, i kept thinking "oh man, do i ever know how that feels!" :) so just know that you're not alone and that even though it sucks, there's a good chance it can be fixed (even though it may mean another surgery). keep fighting!
ReplyDeletei also share the struggle of getting back into shape. i didn't really have time between the first and second surgeries to make sure i wasn't falling too badly out of shape; in fact, i only went for one run between leg 1 and leg 2, so getting my mileage back up (which was admittedly not high to begin with, as i've never been able to run more than a few miles without significant discomfort, numbness, and pain) since the second surgery has been a long and arduous process, compounded by the fact that i'm not completely asymptomatic, either! my left leg feels fantastic--no more pain, and only occasional toe tingles--but the right leg (which was worse off in the first place) just hasn't bounced back like the left. my surgeon tells me that there's not much else we can do medically; he feels that the compartment releases were completely successful, or at least successful to a point where doing another one wouldn't do any more for me. basically now it's up to me to provide the necessary sheer force of will required to recondition my calf muscles to learn how to use their newfound wiggle room. i'm not wild about this because it's going to be slow and i'm ridiculously impatient (especially given how psyched i was to finally be able to run like a "normal person"--this setback is painful and disheartening!) but it's my only option now, so i'm just going to have to push through. maybe i'll never run a half marathon; who knows? but i have to keep on trying.
anyway, keep fighting the good fight and i've really enjoyed following your story as i feel like a lot of it echoes my own experiences.
cheers!
leah
Hey Leah,
ReplyDeleteI'd like to know why you chose not to have both surgeries at the same time? I have CECS, deep posterior, in both legs. I'm looking at surgery soon and have been told by various PTs and ATs to have them both done at the same time, although I haven't gotten this far with my surgeon yet. Also, how long had you been diagnosed with CECS before you had surgery?
Thanks,
Erin
Hi Erin! I decided to have them done separately basically just because of what it would mean for getting around afterward. I was only able to take two days off work for each surgery (I know, not much!) so I had surgery on a Thursday and was back at work on Monday, so being at least able to walk with crutches was a big motivation. In my situation, being wheelchair-bound, even if only for a week or two, just didn't seem like an option because my house has a lot of stairs and I didn't have anyone who could get me to and from work (and I couldn't work from home). So basically it was a mobility issue that led me to have them done separately. As for time between diagnosis and surgery, my first appointment with my surgeon was on December 1 and we sheduled surgery for January 14; it probably would've been sooner but they were booked pretty solid because of all the people rushing to get things taken care of before entering a new insurance year. For me there wasn't even a moment's hesitation when deciding whether to have surgery. I knew I had decent insurance and that I could set aside Flex money to pay for what insurance wouldn't, and I saw this as a major opportunity for me to finally find out what it feels like to run like a normal person!
ReplyDeleteLike I said, it hasn't been 100% a success. My right leg is still symptomatic, and it's a big bummer. But my left leg feels so much better now that I still think all the hard work and pain and money was totally worth it and I would do it again. And who knows, maybe someday soon I'll get my right leg to cooperate better, too. :)
Thanks Leah for the info! I'd like to do mine separately for the mobility issue, but I also don't want to "go under" twice. I guess I will take this up with my surgeon when we get to that point. I was diagnosed with CECS 8 years ago (yes you read that correctly, 8 years). At the time the surgery was not as advanced as it is today so I chose not to have it and gave up playing sports. I'm now 25 and would like to start running and playing sports on rec teams so that's why I'm revisiting the issue. Just curious to you and Sarah and anyone else out there who reads this blog: Do any of you have trouble standing for long periods of time, like at a concert or have problems sitting with your legs crossed? This is something I've noticed over the past year and assumed it was part of the CECS. I'm currently waiting to get MRI's done on both legs to rule out anything else, like vascular diseases, etc... Thanks for all the info and good luck with your recovery on your right leg!
ReplyDeleteI can tell you at least that the anesthesia was the easiest part of the whole shebang for me, for what it's worth. For the first surgery, it was super easy and went off without a hitch. The nurse found a vein in the top of my left hand, put in the IV, and took me back to the operating room and got me settled on the table. Then they started me on some gas of some sort (I don't know any of the technical stuff, hehe) and warned me that I was going to get the spins like I'd been drinking too much and that I should just go to a happy place and think happy thoughts (I imagined what my wedding day will be like when my bf and I get married--how cheesy is that?!) and the next thing I knew, I was waking up in the recovery area! The second surgery's anesthesia didn't go quite as smoothly, namely because it was a different nurse who could not for the life of her find a viable vein for the IV so eventually it ended up going in my wrist, which was incredibly uncomfortable and hurt and made my arm get splotchy. The going-under part was the same--happy thoughts, spins, then OUT--but recovering from the anesthesia was a little harder the second time, largely because I think the wrist IV was stressing me out when I was put out and so I clenched my jaw through the entire operation and it was sore like the dickens when I woke up. But honestly, after the annoyance of a sore jaw wore off, it was fine, and I would do it again with no hesitation. :) Obviously every experience is different, but I just thought I'd do what I could to ease your mind re: anesthesia.
ReplyDeleteAs for standing/leg-crossing issues, I don't really have too many problems with that, so I'm not sure if it's CS-related or not. Definitely something to ask your doctor just to be sure! :)Good luck with whatever you decide to do, and if you choose surgery, please don't be too worried! It's not too bad of an experience, I promise.