Sarah & Nicole's Stories
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I was 9/10 years old when I was diagnosed with scoliosis. I couldn't even pronounce it, let alone understand what it was. My parents did try and explain it to me. All I knew was I was suddenly being seen by loads of Doctors and having to do a lot of exercises.
A year after I was diagnosed, I made my first visit to Stanmore. I was going in to have a plaster jacket fitted to my upper torso. The jacket was to try and prevent my curve from getting worse. Being told you can't have a bath for 3 months was something that really upset me as I used to love soaking in the tub! This went on for two years. Every three months I would go back and have it changed, I was also allowed long soaks in the bath! At times it got very frustrating. I had to put up with my so-called classmates calling me names like the hunchback of Tilehurst. The only time I was allowed a month or so out of plaster was during the really hot spells during the summer. Whilst I didn't like wearing the jacket, it also saved me from serious injury. A car knocked me down when I was 11½. The windscreen and the shoulder of my cast shattered. I got away with a cut to my head and a chipped kneecap. I dread to think what would've happened if I hadn't been wearing my jacket.
During the summer of 1990, the doctors decided to try me wearing a brace instead of the plaster. Unfortunately, after 3 months by curve had worsened considerably and I was put on the waiting list for surgery.
I went into hospital in the October of 1991 and was in for about a month. I had my fusion in two stages. Back then, they were only just talking about doing the fusion as one operation. You never got the chance to be down as the nurses were always around cheering you up and making you laugh. One night, we got the nurses to play Twister, as we couldn't. Instead of spinning the wheel, we cheated and looked for the most difficult moves! You'll find that a lot of your fellow patients are having the same operation so you can help each other through any tough times. Those friendships you make are precious.
That was all 10 years ago now and not a day goes by that I don't regret having it done.
Where I work, there's a guy who must be nearly 50. He has scoliosis. When he was younger, it was considered risky to try and correct a curved spine. You would be confined to bed for 6 months to a year. He has a very prominent hump on his back where he spine has curved so much, its disfigured his rib cage. If today's technology was around back then, I know he would've chosen surgery.
If we can help just one person with this web site, then I feel we would have achieved what we set out to do.
I had my spinal fusion operation in the summer of 2001, and I had to wear a brace for 6 months afterwards.
The first time I knew I had a problem was when I was 14. I went to the doctors with a bad cough, she listened to my chest from the back and mentioned that I had a twisted spine, I didn't think much about it at the time. I got referred to Mr Taylor at the Royal Orthopedic hospital in Bolsover Street in London. X-rays were taken of my back to see the full extent of my curve, when I saw the X-rays I was shocked, I had a sideways curve that looked like a boomerang!!! An MRI scan followed to see what was causing it. When I got the results they said there was no known cause, (this is called Idiopathic Scoliosis). On the follow up appointment I was told it was getting worse. He gave me the dreaded news - I had 6 weeks to decide whether to have an operation to straighten my back and have a metal rod and screws inserted. It was a bombshell - I went into complete shock. I couldn't take anything else in, I just kept thinking to myself how could this be happening to me! I had always been so healthy and my life was going really well. Outside the hospital, me, my mum and dad were in tears, we were all completely devastated. Over the next few weeks I was angry and upset, I thought my life was over and kept thinking why me? I went into complete denial. I was only thinking about myself and never gave a thought to how my parents were feeling. I wouldn't talk to my mum about it until until we had to make a decision. We decided to go for it even though we were all really apprehensive, but we were going to wait until after my GCSE exams in June 2001.
Exam time came and I was feeling really stressed out, I had both things to cope with and needed lots of reassurance from my parents. I thought my friends worried about trivial things, when I had this huge problem. They didn't understand. Just as I was coming to terms with having the op, the week before I was due to go into hospital, the op was cancelled as they had no beds available - I felt gutted! Then on the Friday it was on again. I went into hospital feeling very nervous and left 2 weeks later feeling relieved and 2 inches taller! The worst is over and I'm now on the mend.
Anybody who has scoliosis - my advice is to try and stay positive, tell all your friends and talk to someone who has been there. So if there is anything you want to ask us or just to chat, email us.