My journey with scoliosis started just before I turned 11 just as my body began to change with adolescence. This is the typical onset of scoliosis in those suffering from adolescent idiopathic scoliosis. Adolescent as the name suggests denotes the time period when the scoliosis sets in, while idiopathic means unknown cause. As my body started changing, I noticed only one of my hips seemed to be growing and that my shoulders were slightly uneven but I thought it must be that one side was growing faster than the other. I had always been conscious of my weight and body, even at that age, so I just started wearing baggy clothes and tried to ignore it. I remember looking into the mirror and thinking this doesn’t seem normal but I was too shy to tell anyone. Uneven hips however are one of the first symptoms of early scoliosis and should never be ignored.
I was diagnosed in February 2001. I was shopping with mum and when I tried a sports bra on mum noticed that something seemed a little off. She kept telling me to stand up straight but it didn’t matter how hard I tried I couldn’t. One of mum’s good friends was a chiropractor so I was rushed off to her to check what was wrong with me. Straight away she could tell I had scoliosis and that it wasn’t just a mild case. In New Zealand, scoliosis is not screened in schools and most people, let alone most eleven year olds don’t know what scoliosis is.
Scoliosis is generally monitored according to the curvature. Mild scoliosis is classified as a curvature below 25 degrees, moderate between 25-40 degrees and severe is anything over 40 degrees. The likelihood of severe scoliosis progressing is high and surgery is generally recommended for curves over 40 degrees. After the initial diagnoses from the chiropractor I was referred straight to an Orthopaedic Specialist to assess the severity of my condition. I can’t remember what my initial curvature was but I know it was already over 40 degrees at that point as surgery was suggested at my initial consultation.
Those few months are a blur in my memory. I only vaguely recall what I was been told and at that point in my life the only things that registered was the discussion around the recovery and what I would not be able to do. At eleven years old, I was very active and playing tennis at quite a competitive level; at that stage of my life I was planning on going to Wimbledon! Hence been told I would not be able to play tennis or do sport was probably the factor that resonated most with me. At that point I still didn’t really know what scoliosis was or what type of surgery was involved, I just knew what the impact on my life dreams would be.
My parents’ concerns however were slightly more functional. Spinal Fusion is the surgery used to correct scoliosis. The spine is straightened as much as possible and the vertebrae fused together with metal rods held in place until the fusion is complete. It is not a simple procedure and although spinal fusion has come a long way, it is still one of the most complicated and painful types of surgery. They were worried about the surgery, what the risks were and what the potential complications could be. I was also growing quite rapidly at that time and was very tall for my age hence mum asked the surgeon what risks this could entail. Of what I do remember, my surgeons blunt answer that the rods could potentially break and the surgery would need to be re-done was one thing that does stand out in my mind. Unsurprisingly, mum was not overly impressed with that answer. This along with the fact that I was not sold on the idea of surgery were probably the two reasons why I didn’t go ahead with surgery in that first year of diagnoses.
This was only the very start of my journey with scoliosis. At this point I didn’t realise the impact it was going to have on my life and how it might shape me. Scoliosis is not an easy disease and I want to try and share what I went through and how I dealt with it through this blog to help others going through what I did. Back then and even now, I just wanted someone to share my experiences with and it is only now as I begin to look back on my life I realise the impact it has had. I hope someone has connected with this enough to follow my journey with these weekly posts I am trying to get out. Look out for my next post, ‘Transitioning – my first year of diagnoses’.