Chronic Compartment Syndrome

About 3 months ago I was diagnosed with Chronic Exertional Compartment Syndrome.

After years and years of living with an embarrassing condition where after any extended amount of walking would cause my legs to go into cramp, I finally got a proper diagnosis. Here is my story.

 

When I was younger, probably around 16, on occasion I would get cramp in both my legs, and the outside, just above my ankles. This would generally come on after walking, particularly walking up hill. This was a bit of a problem seeing I had to walk to college up a hill. Not every time, but every now and then. It would cause me some minor discomfort, and I never really thought anything of it. I also don’t recall telling many people about it.

This continued when I started University, and at the time, to get to Uni, I had quite a long walk from home to get there. One specific time I remember was coming home from University, and as I approached the bridge, I remember being in quite a lot of pain, and at the end of the bridge, had to stop and take a seat and was sat for a good 15-20 minutes before I could walk again. Again, I never really shared this with many people, and it was such a long time ago, I don’t recall what I was thinking.

This went on for many years, and I always avoided walking for long distances if I could help it. I was never very active anyway, not a sporty type, so I just got by with life. I lived very close to town, and every time I needed to go anywhere, it was never very far. During my adult life, my weight has fluctuated, but it never seemed to have a noticeable effect on my legs as quite often, the pain used to get worse after months of increased exercise which seemed to suggest the fitter I got, the worse my legs got.

In one of my jobs, I started to go for hour long walks at lunch time, and this lasted a few months before I had to knock it on the head due to pain. I became a dawdler, reducing my speed, and walking everywhere at a relatively slow pace to avoid the onset of cramps.

It was around 2008 that I decided to go to the Doctors about it and it was originally thought to be something like Intermittent Claudication (a circulatory problem). I underwent various blood pressure tests, muscle tests (nasty long needles inserted into my leg muscles) and it all came back okay. Then I was referred to see a spinal specialist for some further investigations. This concluded in a Spinal Nerve Block to see if it would relieve the pain. This it did not, so I was back to square one. The consultant sent a letter back to the Doctors stating that could be something like Chronic Compartment Syndrome, but they did not have the appropriate tests to determine if this was the case, and that if the GP wanted to pursue it, then they could.

I never bothered (and they didn’t either) to follow this up and decided to just live with it.

Fast forward to 2016, and my problem still was an issue, steadily getting worse. My exercise levels dropped significantly as I worked from home, and it became increasingly difficult to go for walks as even a short walk to the local shops was enough to give me agonising pains.

Then in the Summer of 2016, I had a particularly embarrassing situation where I found myself in Manchester with some work colleagues, and due to the Trams being off, I had to walk across Manchester, a fair distance, in the scorching heat, with a heavy laptop bag. Suffice to say, this nearly killed me, and I was so embarrassed as I was limping, sweating and in a right state. That event knocked me off my feet for weeks and weeks after, and I was severely crippled.

So, back to the Doctors I went, with the Consultant letters from 2009 in my hand. I explained my situation, showed the letters and got myself referred to a lower limb specialist. It’s also worth noting that between 2008 and now, I was also diagnosed with Psoriatic arthritis and was in medication for my Psoriasis, arthritis and had occasional Physio.

Consultation

When I finally got an appointment to see the consultant, well, it was all a bit of a whirlwind. I sat nervously waiting to go in to see him, listening to the nurse chat to others, who she obviously knew, making me feel a tad bit uncomfortable.

When I was invited in, I explained briefly my situation, assuming he would ask questions to probe deeper.  Instead, it kind of felt like he did not believe me.

“Why don’t you go for a walk then and we will see what happens when you come back”.

This kind of threw me a little bit, but I guess I was game for it as I knew that lately I could practically  guarantee that the pain would come on.  He lead me outside the consultation room, complaining about where his nurse had gone.  He eventually found a couple of people who although not part of the team, he obviously knew.  He explained to them what was going to happen, and that when I returned, they were to take me into a side room, disturb him immediately regardless of if he had patients with him so he could come and examine me.

So, I went for a walk, 20 minutes, down a hill and then back up again.  Sure enough by the time I got back, I was limping, pained and incredibly uncomfortable.

When I got back, the nurse was there and I explained what had just happened and what the consultant said.

“Well he is with a patient so you will have to wait”

This annoyed me and I explained what he said but she was having none of it.  She said I should just sit down and wait my turn.  I explained that I shouldn’t sit as the pain may pass, and she just dismissed me.  So I stood around, waiting, shuffling leg to leg in pain, sweating and angry.  I even found one of the people the consultant gave instruction to and they just dismissed me, so I just waited.

 

Eventually he came out after dealing with patients, and I rushed to him to make my presence know.  He invited me in, examined my leg, and spoke,

“Oh yes, there is definitely a big pressure build up there.”

I began to take my coat off expecting further talks or examinations, and he just said

“Don’t worry about your coat, you’re on my list”

He then picked up his dictaphone and started to record.

 

Pre-operative assessment

I was invited along for a pre-operative assessment a couple of weeks before my surgery.  To say I was nervous would be an understatement.  I had to go alone as unfortunately my partner had a funeral to attend.  It was fairly painless, I had an ECG, MRSA swabs, blood test and blood pressure test and everything was fine apart from the Blood Pressure.

180/110

Now my blood pressure is supposed to be under control with medication, but it seems to be very apparent that I have a case of the White Coat Syndrome.  I gave them a spreadsheet of my own readings from home which all seem to be reasonable, and I was hoping that it would be enough.

I then had a long chat with a nurse about coming in to hospital, what would happen etc.  She didn’t really know much detail about my Op, but everything seemed to point to me only having the one leg (the left one) done.  I explained that I had assumed it would be both.  She offered to check with the consultant but explained that chances are, he would not respond with an answer.

A few days later, she got back in touch with me after having a chat with the Consultant, and told me that my Blood Pressure readings were a concern and asked me to get a number of readings done at my GP just to make sure it was safe to do the Op.  I asked again about just having the one leg done and she said that she had asked, but not got a response.

Oh well.

 

Blood pressure monitoring

As an outcome of my pre-operative assessment, I was required to perform some regular monitoring of my blood pressure by the GP just to ensure that it wasn’t really as sky high as it appeared during my assessment.

So, over the course of a single week, I had three appointments booked to see the nurses at my GP Surgery to get some readings done.  Monday, Wednesday and Friday.

Each time, first reading was high, but after chatting to me and keeping me distracted, my readings came down to reasonable levels.

Diagnosis, I have white coat hypertension.

Day of surgery

Eventually, the day of my surgery came round.  I had to arrive at the hospital at 7:15 AM.  My partner came with me, and I was carrying my new PJ’s, Dressing Gown, eReader and medications as requested, via a pre booked taxi.

When we arrived, a smart lady in a suit came to greet us and took us to my private room and explained a few details to me.  I sat, trying to keep my mind off things, and we chatted for a while before I got stuck in to my book so as not to dwell on things too much.

Eventually a Nurse came in and explained what would happen next.  I was given a hospital gown, a pair of very flimsy surgical pants and asked to change in to them and put my dressing gown on. I changed, and sat, and waited a little longer.  A couple of further visits by the nurse to do some admin, and to catalog my medication I brought in.  I was very grateful for my partner being there as she helped ease my nerves.

Waiting for my surgery

After a little bit longer, the consultant swooped in.

Hello, can you confirm your name?

And what procedure are you having?

And which leg?

I assume these were just questions to make sure I was the correct patient, and I was aware of what I was in for.  I asked about both legs and he said under no circumstances would he ever do both at once.  I guess that’s due to recover and risk.  I explained that both legs were as bad as each other at the moment, and he asked which one I wanted doing.  I stuck with the left leg as in general that has been the worst.  He drew a little doodle on it, and explained the risks, such as numbness around the scar, the fact that it might recur if my genetic makeup meant I was an extreme healer ( a reference to the fact that my body may heal excessively and cause the fascia to scar and reform ).

He also said that if it does not work, then the only other option is to just shoot me 🙂

He mentioned that my leg may look different after the surgery, and that it may bulge somewhat when I walk on it, which was fine by me.  If it does work, then there is the option to have my other leg done at a later date.

 

Decompressive fasciotomy

Nothing really to write about the procedure itself as I was asleep at the time (thankfully), but this is what I remember about it.

I was escorted down to theatre by a nurse.  I was walking, and it felt like a hangman’s walk to the impending doom.  We went down in the lift, and then went through some smoked glass doors which I never even noticed before when we arrived in to the hospital.  Instantly, the feel of the hospital suddenly changed.  The smell of antiseptic was strong as we walked through a maze of corridors, and passed various doors marked Theatre and a number.  He showed me through a door marked Theatre One, and into a small “lobby” with a very narrow blue covered bed in the centre of the room.  He asked me to lie down, and so I got on to the bed, and shuffled my bum in to position. As if prompted, as soon as I stopped moving, two men in scrubs entered through a door at the opposite end of the room (which I assume was the actual operating theatre, and started busying themselves around me.

One of them, on my left side started messing with finger sensors, and the one on the right placed a blood pressure cuff on my arm (my nemesis).  As it was a very narrow bed, they put some L shaped metal place holders at each side to stop me rolling off.

A small scratch on my left hand signalled the cannula going in.  Ouch, that hurt quite a bit.  The popped the oxygen mask on me, and I just looked up to the ceiling.  One of them said they were going to give me the anaesthetic to put me to sleep and mentioned it may hurt a little bit.

Wow, they were not kidding, that was really painful.  I remember still looking up to the ceiling, and that’s all I remember.  Nothing else, I did not feel myself get drowsy, did not feel myself going off.  Just nothing.  That was it.

Recovery

I don’t quite remember waking up, but I think I remember opening my eyes and seeing a young female nurse looking at me.  She may have been asking me questions, but I am not sure.  I had an oxygen mask on for a bit, and just lay there.

From what I remember, I did not have the crazy effect I had heard so much about, the disorientation, the chatty ness.  It felt like I was okay, just chatting to the nurse.  She gave me some water out of a straw, and swapped my oxygen mask for a nasal tube.  I just lay there, looking at the clock, and listening to what was going on around me.  Ever now and then, I would be asked how I was, and I replied “fine”.  I certainly felt okay.

Looking at the clock, I had only been in surgery for about 35 minutes.  In and out, quick as a flash.

It wasn’t for another 30-45 minutes that I was then wheeled back up stairs.  I remember being reversed back in to my room, and thankfully, as I was turned, there was my Partner waiting for me.  I felt relieved.

My bandaged leg after surgery

The next day, post surgery

The day after surgery, and I was still in hospital, but due to be discharged.  I was given some Physio, and checked to make sure I could stand and at least shuffle around a bit.

They removed my bandages, and changed my dressing, burgh, and gave me some instructions.  I was given a preliminary date for my follow up appointment (3 weeks later) where I would have my stitches out (apparently, the consultant wants to remove them himself as he has done something special with them ??).

And then I was discharged, with a bag full of pain killers for my recovery process.  We shall see how it goes.

The leg, without the waterproof dressings.

13 Days after surgery

Well, the past thirteen days have been uncomfortable to say the least.

I began with having my leg raised at all times, unless I was shuffling to the loo.  I was able to manage the stairs one step at a time, and in bed, I had to also have my leg raised which made it very awkward to sleep.  As a result, I was shattered most of the time during my recovery.

After a few days of rest, I started to take small walks, just round the block.  This was not too bad, I took it easy initially, but the main pain came from when I got back home as it agitated the wound a fair amount.

After about a week and a half, I attempted my first day out, just to the cinema, so it was a walk, a metro journey, and another bit of a walk.  After being sat in the cinema for two hours I was ready for home as it was incredibly uncomfortable to sit in a normal position for two hours.  As soon as I was home, I resumed my position on the sofa, with my leg up.

It seems to be very achy at the moment, and quite bruised (which is probably the cause of the pain).

Lots of bruising and quite tender

Its another week before I get my stitches out, so I am eager to see what the wound itself is like as it feels quite tight (I assume its got some scabs, must resist the pick).

Also looking forward to being able to shower without the massive plastic bag on my leg 🙂

Stitches out

I had a follow up appointment with my Consultant today, and it went well.  He got a senior nurse to remove the “special” mattress stitches and he was very pleased with the progress.  He explained (after some very dry humour about how he just did it for fun and that it would not actually help my situation), he said I should be okay to remove the dressings, and shower properly without having to wear my plastic bag on my leg within a few days.

The actual removal of the stitches was a little uncomfortable as she seemed to dig quite deep to get them snipped and out.  Some of the knots had been covered with new skin which caused a little bleeding.

Unfortunately, I was unable to snap a picture without the dressings, so that will have to be in a few days.

Stitches out, but with a small dressing.

I still have to wear the compression stockings for another few weeks, but other than that he said just get on with it.  I am still going to avoid any lengthly train journeys for a while if possible as sitting in a normal position causes my leg to swell quite a bit and makes it a little uncomfortable.

I am currently spending about half my day on the sofa with my leg raised, and the other half working from my desk.