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In my last post I talked about the first two years of my chronic pain journey before surgery. I found it a hard post to publish as it was a tough journey but it’s also a very personal one. The purpose of it is for you to get to know more about me and my pain so that some of the things I will blog about in the future make more sense.
Anyway, back to my chronic pain journey and the next 2.5 years…
In January 2015 I get the phone call I’ve been waiting for: the hospital ringing me to tell me about my surgery date. I knew it was them as soon as the number popped up on my phone screen. I suddenly felt all nervous and excited at the same time; nervous because it was finally happening; excited because it was finally happening.
It was a very strange moment but a week later I was going to have my coccygectomy surgery to hopefully ease the chronic pain I had been suffering from the past two years.
My surgery and the start of 6 months recovery
I had my surgery on 5 February 2015. All went well and my surgeon told me my coccyx was very abnormal, so I was partly confident that removing it would do the trick and stop my pain. I stayed in hospital for two nights and finally headed home back to my family on the Saturday morning.
The hard part of the surgery was now beginning. I had always known the risks of the surgery and that it would take up to 6 months to fully recover before getting full benefit. The main risk was infection, so this played on my mind for the first few weeks until I had a wound check by a local nurse and was given the all clear.
As I mentioned in my blog post 10 ways to cope with chronic pain, it’s important to keep busy. I wasn’t able to do much immediately after my surgery but I did make sure I kept distracted and my mind occupied as much as I could.
I spent the first month or so lying down. I had very little energy and just wanted to rest. Obviously I couldn’t lie on my back, so turning over was difficult and I soon got uncomfy lying on each side. TV and reading kept me occupied, as well as daily phone calls to my mum when her and my dad weren’t visiting me.
After 6 weeks or so I was able to venture down stairs. This gave me a change of scenery and I was able to start moving about a little more to help build my strength up again. I also spent a lot of my time doing adult colouring which I had to do standing up.
Time went by pretty quickly and each week my activity and energy increased. I remember my first trip out the house; it was just a short walk around the block with my partner and Milo (my Westie) and I felt I was starting to get my life back again. A short walked soon turned in to a trip to town; a coffee at Costa (using a stand up table) and lying in the garden in the summer sun.
Follow up appointment with my specialist
My specialist wanted to see me after 4 months or so to see how I was getting on. I had to tell him that my pain was no better. He wasn’t too concerned about this “as it can take up to 2 years for full benefit”. He checked my wound and that seemed to be doing just fine. I also told him that I started with neck pain, which I hadn’t had before my surgery.
He decided to send me for an MRI on my lower back, where my coccyx was removed, and also on my neck to make sure there was nothing of concern.
The results for both of these come back all ok, which was good news. Again, I just wanted an explanation for my neck pain but I just assumed this might get better over time.
Realising the surgery hadn’t worked
I returned to work after 6 months recovering from my operation. My pain was no better so I was on a phased return working from home using my stand up desk. I was still very hopeful that my decision to have my coccyx removed was the right one so I stayed positive and got on with life as best I could.
It’s now been over 2 and a half years since my surgery and my pain is exactly the same. In fact it’s worse. If you’ve read my other blog posts you’ll know that my neck pain hasn’t gone away and is something else I have to manage on top of my other pain. As I no longer have a coccyx I don’t have a diagnosis, so I call my condition a sitting disability, or simply, lower back pain.
There is nothing simple about managing this pain though. It’s constant and I always have to plan ahead and feel in control as often as I can to make sure I can limit my pain wherever possible.
Have you been on a chronic pain journey? Have you had surgery that hasn’t worked or has made you worse? Please get in touch or comment below.