Community: Real Life

Life with a curved spine


Stephen

18 year-old Stephen discovered he had scoliosis, or curvature of the spine, when he was four. Since then he's been endlessly in and out of hospital in a bid to find a solution. Here's his honest account about how surgery has affected him and how he's finally living a pain-free life.

Getting diagnosed

When I was four my nursery teacher recognised that there was something 'not right' about my back. She told my parents to see a doctor immediately, but it was dismissed as nothing serious. My nursery teacher was so persistent that my parents decided to go to another doctor, who immediately referred to a specialist. It was then discovered that I had a 70- to 80-degree 'C' curve in my spine.

At this stage I was referred to another specialist who assured my family the best thing for me was surgery. There are many causes for scoliosis but they couldn't tell what caused mine, so it's referred to as 'idiopathic'. I was four, and had to undergo a 12-14-hour operation to put a rod in my spine with wiring. The surgeon could then make an incision every time I grew so the rod could be expanded. Everything went drastically wrong. The rod was never inserted fully because the wiring somehow caught the spinal cord, so they decided to remove it all and clean my spine instead.

Coming round from surgery I was told that I had hypersensitive legs (painful to touch) and that I had temporary paralysis - I would be in a wheelchair for nine months to a year. My family was devastated but I was lucky to come away from surgery knowing that one day I'd walk again. When I came out of hospital even the simplest things - like sleeping or wearing trousers - were really painful.

Endless operations

The next four operations were carried out to replace rods in my back that kept breaking. Going in and out of junior school like a yo-yo was difficult, and as a child I couldn't understand why I couldn't take part in anything slightly rigorous in case the rod snapped. Every time a rod broke it caused terrible pain in my spine and I had to have surgery to get it fixed.

Before my sixth operation I was experiencing immense pain just walking around; my spine felt like it was being ripped from my back. This time, they put screws into my back to secure the rod in place. I was so surprised when this method actually worked and I came out of surgery pain-free. I was able to get on with my life for another three years without any pain at all.

"I had to have 12 hours of surgery, which involved cracking and removing several ribs to reduce the rib hump on my back."

But then, in late 2000, I started to experience a lot of pain and they decided that I would need to go through investigative surgery and a costoplasty lasting 12-14 hours. This involved cracking and removing several ribs to reduce the rib hump on my back. When I came round I was in pain and relentlessly vomiting from the anaesthetic. I had bad pains in my chest because of the ribs being removed and at one point I was begging to come off the morphine because of the side-effects.

When I left hospital I had to see a nurse every day to check the bottom of the scar as it wasn't healing properly. I soon visited my consultant again and discovered that I would need yet more surgery as I had an infection. This time, my spine would be reopened and cleaned and the rod would be removed to stop it from 'clinging' to the metalwork. My spine would then be fused into place with bone from my ribs to make sure the current degree of my curve couldn't change.

Starting to live a normal life

Although I've witnessed pain since then, it has very little effect on my day-to-day lifestyle. Sometimes my back will ache after long walks or working too many hours, but after relaxing for a while I can carry on. It also affects my ability to take part in rigorous activities such as rugby or using a trampoline.

I was unable to attend school during the process of recovery. A home tutor helped me to make up the time I had missed and then I went back to school full time, just in time for my GCSE exams. It was a relief to be back in school, but at the same time it didn't feel right for me to live a normal life - for once in my life I wasn't tied down and it felt weird.

Being inspired to achieve

My operations made it difficult to be sociable because I missed so much time at school. They also had a drastic effect on my grades. Through sheer persistence I managed to pull my grades up from Ds and Fs in my mocks to As and Bs. It gave me so much inspiration to achieve and I really began to value the opportunity I'd been given to get on with my life. One tiny complication could have put me in a wheelchair, which would have meant a very different way of life.

Stephen in car

Stephen's worked for two Formula 1 teams

I sometimes find it difficult to talk about what I've been through because it doesn't seem real to me. I'm now 18 and I'm now well on track to study at Leeds University. I'd like to work in the healthcare or pharmaceutical industry so I can provide help to others with medical problems. I'm also passionate about motor sport and I've worked for two different Formula 1 teams. At the moment I feel so happy with my body and at the same time so lucky to have the ability to achieve. I don't think there's many people that can say that much!

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