In September 2013 I underwent a procedure that turned out to be probably the biggest and scariest experience of my whole life – I had my spine fused. Now anyone who has had a physical disability from birth can probably tell you that you do have to endure a certain amount of pain throughout your life, most people would’ve seen a physiotherapist at some point, but this was something else.
Spinal fusion is an operation to correct a curve in the spine, known as Scoliosis. I must make clear that not everyone with Scoliosis needs surgery (if there’s anyone reading this who has just been diagnosed then don’t panic!) Fusion tends to be used when there is no other alternative to correcting/preventing a curve in the spine. I am in no way a medical expert, this post is just my experience living with the condition.
I was diagnosed with Scoliosis when I was about 13/14 after having trouble sitting straight and weight-bearing. I had a 40 degree curve and my back was forming a ‘S’ Shape. I don’t know which one of my vertebrae were affected, (I like not to know everything about my conditions it gets too depressing or maybe I just like a surprise, who knows?)
Between the ages of 14 and 21 my curve didn’t really cause many issues, I had moulded wheelchairs to deal with the curve and began to use a hoist for lifting. It wasn’t until one day, getting ready for a lecture, that I noticed a problem. My leg was up in the air and couldn’t sit flat, after seeing the doctor I went to A+E to get it checked out, only to be greeted by a doctor who couldn’t understand that not everyone has the ability to stand and then sent me home with a referral (he couldn’t see anything on an x-ray). From this day, I started to get pain in my both my hips and back that steadily got worse and was treated with Tramadol & Oramorph (strong painkillers).
My referral came through and I had more X-rays and found that my curve had gotten worse. Why this happened its not known but it happened during a very stressful situation at the time (- I’ll save that story for another day!) At the time of my operation my curve had increased to above 100 degrees and was twisting. The curve was beginning to push my lungs.
The day of my operation came around, and it was all a bit nerve wracking – after having my last minute test done there was a curveball, my fusion was rescheduled for two weeks time – so what was I doing there? Well, I was having a procedure called Halo Traction. Halo Traction involves putting bolts through your upper legs and a metal halo fixed into your skull and being laid on a weighted bed to stretch the muscles and tendons. It really is as medieval as it sounds! This is done so when the fusion is done there is a greater chance of correcting the curve.
Waking up from traction was horrifying. I couldn’t move and my neck and my head hurt – a lot! For the next 10 days I had a diet of rice pudding, a cocktail of drugs, and literally hours counting ceiling tiles. (oh the fun! P.S Southampton you may want to employ people to clean them and maybe paint something pretty on the tiles?)
So after what felt like an eternity, or in real terms 10 days, it was fusion time. Trying to move a weighted bed through a hospital was fun, the bed had to be dismantled, and going back into the anesthetist room was scary after feeling intense pain from the traction, but it was a now or never situation. What happened over the next few days is a drugged-up blur but after over 10 hours on the table that was it – I had a ‘new spine’. Well, 30 bolts that gave me a new straighter spine. The journey wasn’t over. I was originally told that I was going to be in hospital for 10 days and that I would be recovered enough in a month to start living life, but this was not true. After spending almost 4 weeks in hospital I discharged myself (there’s only so much you can take) I was a long way from functioning, let alone recovered.
Being out of hospital was scary. My life was totally different and, if I’m really honest, I couldn’t see how it was going to get better. I could hardly move and I spent most days asleep. This literally was my life for the next 4 months. I couldn’t go to uni, eat much, sit up or go out. I missed 3 gigs! 😦 but in the December I got a little kitten and named him Thomas O’Malley. It’s true what they say – pets are the best medicine! He was a really poorly kitten so it gave me a pretty good distraction.
The first time I left my flat for anything other than hospital appointments was to go to a Justin Timberlake gig with my sister. I really did have to force myself to go – but I’m so glad I did, not just because I got some quality sister time oogling after a beautiful man but because it gave me the kick up the arse I needed! I started to plan for my future again, take my uni coursework seriously, go out and start to look after myself again!
From that day (April 1st) til now I’ve completely changed, I managed miraculously to write over 18,000 words in under 8 weeks thus getting a 2:1 – although this really isn’t advised. (Many nights were spent drinking redbull and crying, I assure you!), I saw two of my best friends get married, I have given talks and become an advocate for independent living, I got little Ruby Roo and I live life again…
Everyone has difficulties and hard times but it’s about how you overcome these difficulties that is the main thing. Sometimes for me it has been pretty hard and negative and yes, sometimes I do wonder why I had surgery, particularly because it has made me re-think independence and I’m still in pain, but it has happened and honestly that pain and frustration is what drives me today.