Sunday, 7 August 2011

My Scoliosis Journey: The Beginning

I thought I would just backtrack a bit and write about when I first diagnosed with scoliosis when I was 14. How I felt and what I went through in the 10 years between my initial diagnosis and my scoliosis surgery last year.

So...here goes.

It all started when I was 14. I was a normal teenage girl, obsessed with Ben from A1, falling out with my parents, hanging out with friends. Like many teenage girls I felt self-conscious and awkward about my body.
Little did I know that my body issues were about to get so much worse.
From the age of 13, like many other teenage girls, I had started to notice some changes with my body. I only wish that these changes were just puberty related.
 My ribs began to stick out on my right side and my right shoulder blade stuck painfully into the hard plastic chairs during school assembly. My parents were always telling me to ‘stand up straight,’ thinking that I was a “normal” slouchy teenager - they never imagined that there might actually be something seriously wrong with me.
After a few months of complaining about my ribs and shoulder blade to my mum she made an appointment with the Dr, I think mainly just to keep me quiet.  ‘It won’t be anything serious,’ she said ‘but best just to put your mind at ease.’
 To be honest, I didn’t even want to go. I was expecting the Dr to laugh at me and send me home for wasting her time. After all, it was only some sticky out ribs. Maybe she would tell me that I was just too skinny and to go home and eat some cake.
Instead, she asked me to bend forward and touch my toes while she examined my ribs. I was quite athletic at the time; I loved keeping fit and swimming. I remember feeling so proud that I could actually touch my toes that I was half expecting her to applaud me for my amazing flexibility.
‘You have scoliosis.’ She said sympathetically.
The three words that changed my life forever.
I just stared at her, stunned. Scoliosis? What was that? I’d never even heard of it.
‘It’s a curvature of the spine,’ she explained, ‘you’ll have to go for an x-ray to find out how severe it is.’
Tears prickled in my eyes. This sounded serious. I went home, up to my room, slammed the door, lay on my bed and cried. At that moment I thought my life was over, I thought I’d end up in a wheelchair and I’d never be able to play sports again or live a normal life. I just kept thinking ‘why me?’ over and over, I had thought that I was so fit and healthy that it came as a huge shock.
 If I could go back and speak to the teenage me I’d tell her not to be so over-dramatic, but then I didn’t know the first thing about scoliosis - and it scared the hell out of me.
I can still remember the first time I saw the x-ray of my spine. As the consultant put it up on the light box, I just stared at it in disbelief. It was curved into a backward ‘S’ shape and twisted so much that my ribcage was twisted, pushing out my right shoulder blade and forming a ‘rib hump’ on my back. I just couldn’t believe that it looked this severe and yet nobody had even realised there was anything wrong. I didn’t even suffer with any back pain.
‘I can see from the x-ray that you have finished growing,’ the consultant said, ‘this is good news; it means that your curvature should not get drastically worse. However, we will need to keep monitoring it each year .’
The room started spinning as I tried to take in what the consultant was saying. ‘Why did this happen?’ I tried to think of things I might have done to cause this, was it my fault for carrying heavy my heavy school bag on one shoulder?
‘You have what we call Adolescent Idiopathic Scoliosis, we don’t know what causes it but it generally happens during a teenager’s growth spurt.’
He then went on to say that they usually brace teenagers with scoliosis to prevent it getting worse during their growth spurt, but as I’d finished growing bracing would do nothing for me.
Mine was already way too severe for that.
He said I could have an operation where they would make an incision ‘through the front and back’ (his words) and ‘insert metal rods and screws’ into my back to correct the curvature and prevent it getting any worse in the future. However he stressed that this was highly risky and only recommended for ‘cosmetic reasons.’
I was gobsmacked. One minute I was a normal teenager,  the next I was being told I need major surgery.
Even though I longed to look normal, it all sounded so horrific and scary to me that there was no way I was ever having the surgery.

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