Update One Year Later

Wow, it's been a long time since I've updated this blog.  The reasons for this were partly due to laziness and partly due to being unsure how to convey how I have progressed. 

The good news - beyond numbness on the inside of my leg above my right ankle (which does not really affect much), there are no lasting problems from the surgery.  Additionally, I do not have Compartment Syndrome symptoms and had an additional pressure test in which it was confirmed that the CS is gone. 

The bad news - The back pain that was thought to have been secondary to the CS has not improved, and I have had problems higher up the chain involving my left hip.

Now, from the perspective of people who have CS and are reading this for advice, the back pain issue probably should not bother you.  From what I can tell, most people whose lives have been compromised by CS are not also suffering from debilitating back pain, as I was (so that shouldn't be an issue).

The hip problems I have had (pain, decrease range of motion, can't really ride a bike....) may or may not be a result of the surgery, it's impossible to tell.   I'm wondering if anyone else out there has experienced problems in other parts of their bodies that they believe might have been due to the surgery.

It's entirely possible that I am a special case and my body might just be kind of fucked - The CS is gone though, and I have no regrets about the fasciotomy. 

My advice:  If it's severely impacting your life and you are young, find an EXPERIENCED surgeon (does at least 5-10 of them a year), and get it done.   Being active kicks ass....don't let anyone tell you to  accept what has happened to you and not do anything about it.

Ups and Downs - Running, Biking, and Some Pain in Between

Hey all, sorry I've been away for so long... The past 3 weeks have been quite scary, as my left leg has felt like the Compartment Syndrome was back and rearing its ugly head even stronger than before.  The right leg, however, has been doing swimmingly, and has felt great (Interesting, due to the fact that for the majority of my recovery, the right leg lagged behind the left - moral of the story: Recovery is a fucking roller coaster).  There would be a constant sort of burn/pain in my left outer shin/ankle, and going up steps would exacerbate it (although interestingly enough, jogging and biking kind of made it feel better?  Anyone have any idea what the that could be?)

The surgeons and physical therapists both claimed that it is simply too early to tell if what I am feeling is an indication of the compartment syndrome coming back and the fasciotomy being a failure.  I am currently about 10 weeks post-op, and they say I need another 2-3 to see where I'm at.   My physical therapist even claims it might be due to weak peroneals in my left leg.  Either way, I am happy to say that there has been a steady improvement over the last 4 days with regards to the left leg, and now the symptoms are just a sort of constant burning sensation over the left shin/ left foot area, but are not exacerbated by activity.  I sincerely hope it is just the pains of getting better, but we shall see. 

In terms of activity, I am alternating days of running about a mile and biking about 7 miles.  While running, my legs feel pretty good, although I've noticed that there is an imbalance strength wise between my right and left leg (right leg is much stronger), and thus I have been instructed to go to a chiropractor to make sure my alignment isn't out of whack and throwing off my form completely.  Appt. is on Wednesday, and hopefully I'll update everyone on what's going on.

Compartment Surgery Recovery - Elliptical Baby Steps

Got on the elliptical today and felt no pain - Granted, it was only for 5 minutes, as the physical therapists say it's important to take it slow and not aggravate things.  It was a baby step, but a significant one.  Tomorrow or Wednesday I'll ramp it up to 7, and hopefully in about a week I'll begin light jogging.

Encouraging Progress Continues....

Biked 5 miles yesterday and had absolutely no pain in the legs - Also, after identifying that I had almost completely lost all glute/hip activation while doing day-to-day activities, I have started to do certain strengthening exercises, such as X-band walking and the first two exercises detailed in this video, and my back pain has been gradually subsiding, which is awesome.

Updates - Recovery and Physical Therapy

Hey all, just a quick update - Have progressed to doing squats (extremely sore! In a good way though) and heel raises throughout the day pain free which is awesome - Pre-surgery those could simply not be done without the compartment syndrome high pressures stopping me ... tightness in the calf is abating more and more every day - This Monday I start bike and massage and I'll post how it feels....

Three Weeks Out - Physical Therapy, Recovery, and Questions

Hey all, sorry it's been a while - things have been busy. Last post explained my first post-op visit and left off with me excited for my first PT appointment. I went to a nice place in the Longwood Medical Area (for non-bostonians, that probably won't resonate) where they were recommended by my surgeon due to the volume of compartment syndrome afflicted patients they receive. I was still somewhat apprehensive that I might be assigned to a physical therapist that would not have significant experience with CS, but those worries were quickly placated when I met Jerry, who seemed to know his stuff.

He explained that for another week and a half, calf/ankle stretching and some very simple calf/ankle strengthening exercises would really be the only PT I would be doing, as the legs are still healing from the trauma of surgery. At about 4 weeks post-op, he explained, is when the real physical therapy would begin, with some bicycling, and, in his words, "massaging the hell" out of my legs (I assume that, among other things, it goes to break up scar tissue).

Interestingly, a reader of this blog named Tom has mentioned that his doctor advised that he should start running as soon as he could in order to break up the scar tissue. This seems to be in direct conflict with what both my surgeon and physical therapists have advised - Namely, to absolutely not run at least for the first 6 weeks, and to err on the side of not pushing it in any activity one might find themselves in. It seems that there is obviously two things that need to happen post-op - your legs need to heal, and scar tissue needs to be broken up (obviously there are additional factors, such as strengthening, but these two seem to be the crux of this conflict) - Now I would assume there would be an optimal time where the healing of the legs would reach a point that increased efforts to break up scar tissue would not compromise the recovery - the question is when that point is. So if anyone else who has been advised by a doctor as to what point they should begin running activities (and keep in mind that in both cases 4 compartments were released on both legs) then please speak up!

As for general updates on leg ability, I now can be on my feet all day with barely any pain, although I sometimes encounter swelling late in the day, however it is not too significant. Yesterday I walked all over the city, probably a combined two or three miles, with minimal discomfort. Stairs pose no issue. My right leg is still a little behind my left leg, in that the calf is tighter and flexibility is just not as far along. But overall they are still gradually improving. Next physical therapy appointment is Wednesday, so I'll keep you guys posted.....

The Day of Reckoning - Surgery - Bilateral 4 Compartment Facsiotomy

I found it fascinating. In the weeks leading up to the surgery, I would always get asked the question, "are you nervous?". And I would reply truthfully, that I wasn't. But driving to the hospital at 2 in the afternoon on the day of surgery, it hit me. This literally would affect my entire life going onward. Either it would work, and I would be able to resume athletic activities, or it would fail, and I would be forced to significantly alter my lifestyle, as I had done for the past year. I guess relatively speaking, it wasn't nearly as big as some actual life-threatening surgeries people face every day, but still, this was important to me - and I was rattled. This was something that I absolutely could not control; I was at the mercy of my surgeon's abilities.

It was also eerie checking in alone - While that is probably normal for most adults having surgery, the last time I had any kind of procedure done with anesthesia was in 10th grade when I got my nose shattered by an elbow while playing basketball. Back then, my parents accompanied me. This time, however, I was alone. It kind of hammered in the point that this surgery was about me, and if it did fail, no amount of comfort in the world would allow me to be the same.

Alright, now on to the details that you all actually care about. My surgery was scheduled for 330, and I was told to arrive at 2. I got there, and switched into the always-oversized and forever-comical looking gown. Doctors came around periodically and almost all of them asked me the same questions about what I had eaten in the last 24 hours (I was not supposed to eat after midnight, and not supposed to drink water 2 hours before surgery). I could not tell if this was a case of unfortunate bureaucracy or if it is protocol in order to really make sure the patient isn't forgetting the entire pizza they ate an hour before surgery, I'm not sure.

I asked to see the surgeon before, as I wanted to ask some last second questions in order to have some peace of mind before they put me down. I had 2 questions - 1. I reiterated the fact that my lateral compartment was negative bilaterally in the compartment syndrome test, and wanted to make sure that, with that knowledge, he still wanted to release it, and 2. If something does go wrong, what are some of the effects I might experience (I know, stupid to be asking 15 minutes before surgery, but I'm a glutton for punishment). For question 1, he repeated the same answer he gave before, that it would not compromise recovery if the lateral compartment was released, and would benefit me in that it would reduce my chances of symptoms returning post-surgery, which would obviously suck.

For 2, he told me that failures usually entail the returning of symptoms, and in 1 case of an older women, there was some permanent numbness in the leg. Armed with these somewhat reassuring answers, I was prepared to go under. The anesthesiologist gave me an IV, started pumping the good stuff, and away we went.

Surprisingly, I woke up quite comfortably. I could feel my legs were bandaged, and there definitely was a feeling that something happened down there, but pain was kept to a minimum. My mom also appeared, as she was going to drive me home. Apparently, the surgeon said that both lateral compartments appeared quite tight, so it's good that he released them despite them coming up negative on the compartmental test! After some saltines and a bunch of water, I hobbled up with the help of a nurse, and got into the wheelchair. Then I had my first real test when I had to get out of the wheelchair and into the car. It's hard to describe the feeling, but it was somewhat similar to my calves being locked, and if I tried to use them, some serious pain would result. So I somehow managed to get in the car, and then, using crutches, made it from the car to a bed I had set up on the first floor. At this point, walking consisted of shuffling my feet using the four-point crutch gait. Any flight of stairs that had more than 3-4 steps would have been immensely uncomfortable at that point. I had a bunch of pillows piled up at the end of the aero bed I was sleeping on so my legs would be seriously elevated. I also was given these nifty ice packs connected to coolers, so I could essentially pump cold water into the packs as needed. I basically got into bed, popped 2 5 mg pills of oxycodone, and drifted in and out of sleep for the next 12 hours. Pain was definitely there, but very mild. I did need to go piss a couple times during the night., though, and the most difficult part was standing up, as that required putting more force on my legs than they allowed, but I mainly just shuffled my way back and forth using crutches.

More updates to follow!

Fasciotomy Pre-Op Appointment - Cautiously Optimistic

Finally it came to the day I was looking forward to for a couple weeks. When I got called at the office, a fellow who works with the surgeon came in to take my history, and ask if there were any problems, etc. I explained to him that over the last couple weeks I had started to feel the effects of CS even when I was not exercising, as it manifested itself in a sort of uncomfortable, not getting great circulation feeling in my legs. He explained that this was not crazy, and sometimes is how compartment syndrome progresses.

Then the surgeon came in. He explained to me that even though I had only three compartments test positive for compartment syndrome, he thought it would be best to release all 4 on each leg. I asked him the reasoning for this, and he explained his reasoning: 1. I had explained to him that most of the pain I felt during running was actually in the lateral area, and thus he thought it would be foolish to leave the compartment alone and 2. He told me that there have been lots of cases where people get 1,2, or 3 compartments released and then are symptomatic later on for the fourth and have to have surgery all over again, so it was safer to release all 4 compartments in this case.

I was worried, however, that this would make the procedure a little more risky, just from the logic that the more compartments you mess around with, the more random things can go wrong. He responded that the releasing of the lateral compartment did not significantly compromise the success of the surgery, and that the benefits of doing so far outweighed the risks.

Then, on to success rates. The doctor told me that 90% of his patients experience full recovery, meaning they are able to achieve athletic performance levels that are commensurate with how their performance levels were pre-onset of exertional compartment syndrome. While in the grand scheme of things, that is not as high as I would like, after reading the literature and looking at online forums, it unfortunately seems that that is the best you are going to get. Plus, I would like to think that since I am still relatively young, my chances will be good.

In terms of a recovery timetable, my surgeon said at 4-6 weeks I could begin to do cycling, 6-8, running, and at about 10-12, I should be nearing full recovery. While that is a substantial amount of time, I really don't care in the slightest if I will finally be able to do the things I love for the first time in a long while.

The surgeon also said he would be sending me for an MRI just to rule out vascular restriction in my legs, as apparently that sometimes causes compartment syndrome-like symptoms. With that, I thanked him profusely, and barring a rare case of vascular restriction, was set to go under the knife!

Choosing the right surgeon for compartment release

Once I had decided that I was going to need surgery, it was time to find a qualified surgeon - easier said than done. While almost any orthopedic surgeon will offer to do the fasciotomy (compartment release), it must be taken into account that compartment syndrome is still a relatively rarely diagnosed condition, and therefore, there are not a lot of surgeons out there who have done the procedure enough times to be truly considered experts.

So when speaking to a prospective surgeon, DO NOT be embarrassed to ask how many compartment releases the surgeon has done in the past year. While this might be a somewhat awkward question to ask, as it implies a certain distrust of the surgeon's abilities, it nonetheless must be asked. I first went to a highly respected surgeon (for those Sox fans out there, he was part of the surgical team that did the famous suturing of Curt Schilling's ankle in the 2004 ALCS against the Yankees). Unfortunately though, he told me that he only did about 1-2 fasciotomies a year. That just wasn't going to cut it. Even if his office walls were adorned with the autographs of the entire '04 sox championship team.

Eventually, I found my guy, who does tons of them, and came highly recommended (If anyone would like names, please contact me).

Now it was time for the pre-op appointment...

Shin Splints? Back Pain? Frustration! Part II

During the aforementioned four weeks (the time between when the numbing, tingling, pain in my shins began to cut down my runs, and when I actually went to a doctor) I began to suffer from a gradually debilitating lower back pain. It started subtly, but it got to the point, that by the end of four weeks, I couldn't even reproduce the numbing/tingling sensation in the lateral shins because my lower back was not even permitting me to run the required amount to bring on the leg symptoms!

I frantically went to two orthopedists, who, after hearing my history, concluded that I was first having shin splints, and gave me the company line that due to extremely tight hamstrings, my back was acting up. Solution? Physical Therapy for the back, and rest from running (which I could not do anyways due to the back).

Physical Therapy helped, and I got my lower back to be once again compliant with running - and then to my surprise, the symptoms in my shins came back even worse than before, along with an ever-shifting lower back pain (sometimes more lateral, sometimes down in the upper buttocks, and sometimes even closer up to the mid-back) that was bothersome, but not nearly as painful as pre-physical therapy back pain.

It was then that I decided to seek a third opinion from a back specialist, whose diagnosis has informed all my treatment since then. When I gave her my history, she stopped me at what I described as shin splints - When I told her my exact symptoms, she replied, "that sounds much more like compartment syndrome" - and then she tried to put the pieces together - This is what she theorized: When I continued to run through the CS pain, I had to alter my gait due to the lack of function of my lower leg muscles, which consequently completely threw off my biomechanics, thus aggravating my back. As my back got aggravated, I began to compensate with other muscles, thus weakening my back/core further, which required physical therapy. She suggested I get an intracompartmental test, as that is basically the only way to test for exertional compartment syndrome (unless you live near a place that is experimenting with the MRI diagnostic procedure).

That is one thing I have not seen on any site with people detailing their CS symptoms - anyone else experience any sort of back pain in conjunction with the CS?

Next: intracompartmental test - kinda sucky

Compartment Syndrome Blog - Let's Get To The Bottom Of This (Pre-op, Post-op, Fasciotomy Details)

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.

A lot of stretching is done after surgery!

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,

John