No-one should go through scoliosis alone. With your help we can support people with scoliosis and their families
I have quadriplegic cerebral palsy and I am a wheelchair user. At 12 years old I developed scoliosis; the curvature gradually progressed at a very slow rate until, at age 17, the scoliosis (left to right) was 108 degrees and the lordosis (front to back) 70 degrees.
With such a severe curve, it was decided that surgical intervention was required. The surgery involved the removal of intervertebral discs, followed by straightening of my spine and insertion of metal rods to hold it in place. The curve was severe enough to compress some internal organs, especially my lungs, which only had 40% oxygen capacity (after surgery this increased to 81% of a normal teenager’s lung capacity for my weight).
The surgery of course had its own risks, but without it I know I would not have achieved my full potential; I might not even be alive today without it. Right from the beginning of the idea that I needed surgery, I was willing to take any risk that would save my life. I felt that in such a weakened position I would just become bed bound, with no aspirations or yearnings to improve my life, simply because any menial activity would cause me excruciating pain; therefore I would not do it.
My parents, however, had to be persuaded that it was right to entrust their son to a surgeon who could quite possibly harm or even kill me. The surgeon explained at great length what he and his team would do to protect the viability of the spine; even down to putting a metal cage around the cord to prevent their instruments from damaging vital organs. Despite the surgeon’s reassurances my father did not want me to go ahead with the operation ”with so much of my life in front of me”. At 17, however, my curve was so bad that my father recognised that surgery was the only way to make me sit comfortably, and he therefore agreed with my decision to go ahead. I’m so glad that he did.
Recovering from the operation was slightly more of an obstacle course; but, I was discharged after only 6 days, which was the quickest seen after major spinal surgery at that hospital. Most patients are expected to spend up to 3 weeks in hospital, 2 days of which are in a high dependency unit. On the day that I left the hospital I remember distinctly telling my parents that I was not straight, even when I had a video camera connected to my chair so I could see with my own eyes that I was! I had the whole process filmed so that people would understand what the process is like. For the first few days at home I was zonked out on sedatives. Waking up at 2 am, going to sleep at 8 am; parents be prepared to become parents of a toddler again for the first few days! Over a 5 month recovery period I gradually increased my time out of my chair from 30 minutes to 10 hours. One day I was so determined that I got out of bed at 8 am and didn’t go to bed until 10 pm. In the morning I knocked on my parent’s bedroom door and my Dad came out with a broom handle thinking I was a burglar! I don’t think a burglar would have knocked!
Over the course of that 5 months I returned to hospital to see the wonderful liaison officers, more like Gods in my opinion, who helped my Mum and Dad have a bit of free time from the psycho that was Thomas Williams. I went back 30 times in the space of 7 weeks. You may wonder why so many times. Simply, because I didn’t believe that the greatest God, my scoliosis consultant, had made me straight. The only way they could prove it was to X-ray me 30 times; you are only meant to have 285 X-rays in a lifetime. Imagine having your leg amputated and you still feel it is there. That was the same feeling that I was experiencing. The X-rays proved it…until the next time that is! My poor parents; having 30 X-rays in 7 weeks, equates to five for every week, a 60 mile round trip, at an average petrol cost of £1.10 per litre.
Now on the 22nd February, 2010, I still feel the ‘what if’ syndrome, even a rather heavy break in the car makes me think ‘oh, call an ambulance!’ but I haven’t had an X-ray in 2 years, so at least I have another bank of 30 waiting for me, if I have another irrational moment! Finally what did the people at school make of this? Well, no more were the days of having to travel around with a paramedic at my side for a year and a half, while forcing myself to complete my AS levels to the best of my abilities - taking 6 hours to do one exam. I returned after 5 months as ‘a remarkable young man from Burton upon Trent’ just as gobby, able to be more controversial, even being a bit offensive. It is amazing what seeing the floor all day does to your sense of humour.
Would I do it again? Yes I would. Would I be alive today without the surgery? Maybe not. But I am one person who decided to take a risk because it was suitable for me. It is not suitable for everyone and you will have to have a certain kind of parent; fortunately I have a mother who works in the medical professional. A really important point that I would like to highlight is that it is advisable to have a care package in place to relieve some of the burden on your parents during the process.
I am a person who acknowledges his scoliosis, and as my friend, Phil Collins, said in ‘Brother Bear’ I’m on my way again, well and truly. I am now re-building my life, I own my own business, selling my ‘Re-building Thomas’ films and I’m going to university. I came out with the highest grades possible from college and I am one of a hundred students this year to be trained by the United Nations on television production in Bradford.