Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

Why I’m excited to have major knee surgery

When someone gets told that they need major surgery, requiring months/years of recovery, the last emotion you would expect them to have is excitement right?!

But that is the exact emotion I feel when I think about the major knee surgery I am currently waiting for. I know it might sound really strange, I mean why would someone be excited to have major bone and ligament surgery (I’ll be having a Lateral Release, MPFL Reconstruction and Tibial Tubercle Transfer) with the prospect of a 12-month recovery? 

Don’t get me wrong, I am also terrified. 3 years ago, I had surgery to fix my deviated septum so that I could learn to breathe properly through my nose again. After surgery, I woke up in recovery to find myself locked in my own body and then as I got wheeled back into my room, I ended up covered in my own blood, with my eyes constantly rolling (sorry Mum, for scaring you so badly). 

For 6 months, I was able to breathe clearly through my nose for the first time in my life but this was unfortunately short-lived. Because EDS causes my wounds to heal slowly and badly, the stitches in my nose dissolved too quickly and therefore my septum eventually returned to being crooked (although it is at least slightly straighter than it used to be). I was told by another ENT consultant to never put myself through that surgery again because I will end up worse off due to EDS. 

Am I mentally scarred by what happened to me after my last surgery? Yes, I am terrified that something similar will happen again.

Am I worried that I’ll go through a 3-4-hour surgery only for it to also fail? Yes, absolutely.

Am I scared that I will end up with huge, wide scars down my leg due to EDS? Yes, it really worries me that I may end up being greeted with huge, ugly scars every time I look at my leg.

Does the thought of having my leg locked in position for 8 weeks frighten me and make me worry that my hip and back pain will get worse? Yes, I think about the effect recovery will have on my other joints and the amount of pain I will end up in on a daily basis and it scares me.

So why, with all of these fears and worries going through my head am I still so excited to go through this surgery?

The answer is simple, I cannot carry on living like I currently am – scared to death every time I move, that my patella is going to dislocate. 

Now, that might sound like an exaggeration to some… why would you be scared of something dislocating every time you move, dislocations aren’t that common? But for those of us with EDS, they are that common. I have dislocated my right patella 4 times (in 5 years) and subluxed it well over 100 times (in 14 years). Each time this happens, it takes me longer to recover. 

My first major dislocation on my right knee was in 2014 (caused by walking in a straight line) and I ended up tearing every ligament bar my ACL. I couldn’t walk for a week, had to wear a knee brace for 8 weeks and couldn’t kneel down for 10 weeks.

 Fast forward 5 years and I had my most recent major dislocation, this time caused by opening the shower door (and no I didn’t slip, I was just standing still one minute and collapsed in agony the next). This time, I once again tore my ligaments but I also ended up with a stress fracture running down the right side of my patella, caused by having to put my patella back into place whilst my knee was locked in a bent position. 

This happened back in November 2019. It is now June 2020 (7 months since the dislocation) and yet, I still cannot straighten my leg without my patella trying to dislocate. I can’t leave the house without a knee brace on because it’s too unstable. I have to ice my knee for 20 minutes every day because it gets swollen from just walking a few metres, and I still cannot kneel down without severe pain. 

So, yes, I most probably will end up with huge scars down my leg, more pain in my other joints during recovery and there’s a chance this surgery may fail. However, there is also a possibility that for the first time in 14 years I may be able to move without there being a massive risk of my patella subluxing or dislocating and I cannot wait. 

Even if the effects of this surgery only last for 6 months, that is 6 months that I can enjoy simple things like walking, without being scared. 

So, whilst a lot of people would probably do anything to avoid having such a huge operation, I personally cannot wait for surgery day and I will do everything I possibly can to ensure that this operation is successful so that I can start enjoying life again. 

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