Hello, I'm Izzie. I was 17 last May.

I was diagnosed with scoliosis aged four. It developed because I have a genetic neuromusular condition (this means it affects all the nerves in my body and basically makes them do weird things)! Anyway, so my parents were told I had this thing called scoliosis, that meant my spine was curved. I was sent to the orthopedic surgeon, to get a proper assessment.

It was decided to monitor my scoli annually. They decided not to take any action, such as bracing as it was thought that it would not have much benefit. I continued to have check-ups once a year, until I was 12. However, when I went for my check-up in Sept 2001, I was told my had progressed quite significantly and that I would now need surgery to correct it. However, the consultant I was seeing was due to retire, so he said it would better for me to change hospitals.

Almost a year went past, by the time I had changed hospitals and moved to the top of the list. My scoliosis had progressed quite significantly in this time and therefore the surgeons said that it wouldn't be possibly to do my surgery in one go. I was told I would two operations with two weeks of halo traction in between. This is where your spine is kind of stretched or pulled straighter using weights that are attached to a metal ring around your head. The weight gradually increases. I had the first operation on November 15th 2002. It took 8 hours, I remember waking up in Intensive Care (the first thing I remember was two days later, as I was so drugged up) anyway, in Intensive Care the ceiling is painted to look like under the ocean and I remember being very confused - I thought I'd drowned! I was also very confused about the metal thing that was attached to my head (the halo)! I started having weights added the day I went back to ward. I had to sit up in a specially adapted wheelchair everyday, for what felt like to me a very long time but was probably only a few hours. I lay on a bed which had a big metal bar to hold the weight for the rest of the time. I got quite fed up, as I could do very much but my friends were great and came to cheer me up, even though the hospital is a few hours away from where I live.

I had the second operation about two weeks later, that one took 7 1/2 hours. It was decided; for a precautionary measure that I should go home wearing a halo brace. This was so that my head/neck was completely immobilized in order for everything to heal. Somehow one of the pins that was attached to my head got infected, so I had to have the halo brace taken off a bit earlier than expected. I then had an x-ray and the surgeon noticed that there was a gap in my spine (probably due to the traction working so well)! I, therefore had to have another operation to mend the gap, as it would have been dangerous to leave it. I had my third operation February 2003, this one took 6 hours. I woke up in Intensive Care and I immediately knew something was wrong... I couldn't move or feel my left arm - it was completely paralyzed. When I had come round a bit more, I was told that the nerves in my arm had been severely damaged. Nobody could really tell me anything else, they didn't know when or if it would come back. I should stress to every reading this who hasn't surgery yet and is worried by this that my case is very rare and very complicated. The surgeons will tell you if they think that your case is going to be more complicated than usual, otherwise don't worry, unnecessarily!

Anyway, back to the story...

So, I went home with my arm in a sling and everyone kept asking me: 'how did you break your arm' ? I remember wishing that it really was broken, rather than severely nerve damaged! I couldn't move it, or it feel for some months afterwards. I went to physio twice a week, to try and get it stimulated again. Then it started coming back very slowly and painfully but I didn't care that it hurt - pain was good after not being able to feel it for so long! So, the sensation and movement gradually came back. I did have to change writing hands, though - I used to be left-handed... that was quite hard and my writing is still quite slow! Anyway, I ended up being off school for the almost the whole of the academic year (which in the UK is September - July), I was only in school for the first two months of that year! I got really depressed and fed up. I also found myself adopting the whole 'why me' attitude, which is never a good thing!

However, the new school year started in September and I was very glad that I could finally go back with everyone else. My writing with my right hand was still a bit of problem at this point, so I had someone to write for me, as I just couldn't keep up with the class notes. Things improved slowly and I got back into school, fine and passed my exams (which some people were very surprised about, as I'd had so much time off).... everything was fine until last Aug, when I started getting pain my back. I went to have it x-rayed in mid September and it was found that one of the rods had been pushed out of place (one of them was always a bit too long but it had moved even more). The surgeons decided it would be better to remove it, before anyway more damage was done... however, whilst I was on the waiting list; it broke and became pretty painful, so I was pushed ahead on the waiting list. I finally had it removed and replaced in March of this year. I recovered alright from the surgery. However, I started getting more pain and so it was another trip to the hospital to be x-rayed, again. It was obvious straight away that the other rod had broken. I was put on the list to get it removed, surgery was scheduled for mid August. However, it has been postponed because they need to investigate exactly why it broke, further. So, I'm waiting to have an MRI.

Thats my up-to-date story. Thank You for reading it.

Back to Scoliosis Stories