Thursday, 22 December 2016

Chronic Exertional Compartment Syndrome- A 10+ year journey.

Something big happened in my life last week. But in order for you to understand why its so big for me, I need to start at the beginning.

I have danced all my life. I started ballet when I was 4, competing onstage for the first time the same year. I started pointe work when I was 11, and I was generally an active kid. I did triathlons, gymnastics, swam competitively, and I loved camping and the outdoors. But it was ballet that was my main focus. When I was 13 or 14 I started getting cramp in my legs in class. At first it would be just a bit of cramp, easily stretched and rested for a few minutes, then get back up and keep going. Then it developed into something else. It was this constant burning cramp, but stretching it only made it worse. Allegro and pointe work were the worst. But other than dancing, walking up hills and walking longer distances in jandals, nothing else made me have this pain. I complained of it for awhile, but i was just told that feeling the burn was good, because my muscles were working. That i needed to suck it up and get going.

Around this time there was a girl at my dance studio who was diagnosed with Chronic exertional compartment syndrome (CECS). A condition where your muscles are too big for their fibrous sheaths, so the pressure inside gets too high and your blood flow becomes compromised. Your muscles literally strangle themselves.

It wasn't until winter school when I was 15, at the NZSD, that things really got bad. 6 hours a day for 5 days of dancing. I was in agony. Mum gave me supplements to help reduce the cramp. I was chugging magnesium melts so much my poor liver probably still has damage. But it didn't help much. I gritted my teeth and got through it. Mum started to wonder whether I might have what the older girl had had. By this point I had stopped almost everything but ballet. Partially because I wanted to focus on dancing, but partly because I was just in so much pain.

After mum talked to the mother of the other girl, we went to my doctor and requested a referral to the same surgeon that had done her surgery. That summer, dad and I flew down to wellington, and had a consult. The surgeon agreed that I was describing symptoms that matched CECS and organised the pressure testing for the same day. I was booked in for surgery too. There was a hill up to the hospital, so when it came time to bring on the symptoms, i just went for a wander up and down the hill. The tech very carefully and slowly put anesthetic into the injection spots, and then he very slowly jammed this giant needle into my legs- multiple times. It hurt so much! It was like i could feel the giant needle grating against my bone! By that point the pain in my legs had long subsided and I was feeling every bit of the needle (did i mention the anesthetic didn't work properly on me till after the procedure? thanks genetics!) Even worse than the pain, was the test results- Negative. So the surgery date was cancelled, and I was sent back to my GP. With no cause for my pain.

Around this point I started to assume that I was really just a big wuss. That this pain was a normal burn from exercise, and that if everyone else could deal with why couldn't I? The PE teachers at school told me to suck it up, if I didn't have a note then no I couldn't stop running in PE.

When I was 16 I sat my RAD Advanced 1 exam, and I walked out of the exam crying from the pain. I swore I would never sit another exam again, and to this day, I still haven't sat my Advanced 2 exam. When I was 17 I hung up my pointe shoes and went off to uni, to study Physiotherapy. I lived in Dunedin, where my main mode of transport was walking, and hills were abundant. I was always trailing behind everyone else. I was called lazy, unfit, slow coach, wuss, pathetic, attention seeker etc by people I no longer consider friends. And I believed it alot at the time too. But since walking uphill was the only time I had pain, I just struggled through it, and avoided hills like the plague. I often would walk the longer route home if it was flatter.

I went skiing during my first year, and that was absolute agony. I had been in these boots for all of 30 seconds when the burn started. It was so intense and it took me by surprise. My closest friend at the time was not very sympathetic. As I tried to hold in tears and work my way up the slope, she told me I was being pathetic and ruining her ski trip. Something she repeated the next day when I complained about having to walk up the hill to the Queenstown gondola. I discovered if I undid the top straps of the boots, my ankle wouldn't be forced into the dorsiflexed position and the pain was much more manageable. Of course anyone who has been ski-ing knows this is a no-no, and leaves you vulnerable to fracturing your ankle if you crash. Luckily, this didn't happen to me, but I did get told off a few times by mountain staff, and no-one seemed to care when I was in pain.

I made do for 5 years at uni. Every now and again I would decide to go for a bush walk with friends, every now and again I would trail behind and was reminded why I don't do that anymore. After I graduated i signed up to do the RAD ballet teacher course, and I started dancing again. I got back en pointe and started doing Advanced 1 class 2-3 times a week. The first 6 months were fantastic. But the pain returned the more dancing I did. Being a physio now, and having tried everything I could think of to relieve the pain, I went back to my doctor. I requested a referral for more investigations, but this time through the public health system. I had x-rays, ultrasounds, consults etc. And finally, almost a year after my referral was made, I had pressure testing again.

This time was very different. I went to the studio for an hour before-hand, I tried to bring on the pain but it wasn't as quick to show this time. I had had nearly a month off dancing and I dont walk as much as I used to, but I made some progress. Then at the hospital I walked on the treadmill, and brought the pain on much more there. Then we quickly sprinted down to HDU, I did some calf raises to bring the pain on nice a freshly, then jumped on the bed and the surgeon jammed the needle in like a dart. It was very sudden and a quick sharp pain but over very quickly. It hurt much less and the result was positive! He tested a few other compartments, but I struggled to do calf raises properly after the ache from the first needle going in. They were all moderately high.

Now I'm on the waiting list for surgery, and it looks like it will be done sometime in the next 6 months. I cant wait to be able to walk, and keep up this time. I cant wait to dance without pain. I am so glad to have an actual medical reason why I'm in pain, and better than that, a light at the end of the tunnel. I cant remember what it feels like to dance, or walk up a hill without pain. I cant wait to experience it.

Which brings me back to the reason for my writing this blog post

1) To everyone who ever called me pathetic, or lazy, who didn't care when I said I was in pain and told me to suck it up and hurry up, most of whom wont ever read this because there's a good reason I cut you out of my life, screw you. You have no idea what I was dealing with.

2) I hope that anyone else who is experiencing symptoms like these doesn't let themselves just be sidelined like I did. I regret so much not demanding more answers. And I knew when that needle went in during the first testing that the pain had gone. But I figured they knew better than me and that they would find out what was wrong. When you know somethings not right, keep going until you get answers. You deserve it.

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