How It Feels . . . To Have Steel Rods In Your Spine

The Age

Wednesday December 27, 2006

TRACEY CAULFIELD

When Tracey Caulfield was diagnosed with scoliosis as a teenager it was the beginning of a long and painful quest for a straight spine.

I WAS a pretty active kid. I enjoyed most sports, especially gymnastics. That's how I discovered my scoliosis.

I was 14 and practising in the backyard when I put one hand on my back and noticed a large lump on one side of my spine. I had never noticed it before.

I wasn't really worried about it, but I showed it to mum anyway for a bit of sympathy and attention.

The following day we were at the GP. He got me to bend over and touch my toes and explained to mum that the lump was caused by my ribs being pushed to the side by my curving spine. We wouldn't know the extent of the problem until I had X-rays.

By the following week I was stripped down and X-rayed from pelvis to neck. We were sitting in the office of a Collins Street specialist who measured the X-rays and told my mother that I had not one but two severe lateral curves of the spine, which meant that my spine was basically in an S-shape.

The only way to avoid an operation, he said, was to wear a back brace to try to arrest the development of the curve.

A week later we went to the Royal Children's Hospital and walked through the maze of corridors where we passed many children missing limbs or wearing the equivalent of some medieval torture apparatus.

When my turn came we were taken into a room full of prosthetic legs and braces and helmets.

The doctor gestured to a large contraption in the middle of the room, which he referred to as "the rack"."

Now I know it looks difficult but I need you to try to balance on this strip here," he said, indicating a 10-centimetre canvas bandage that ran the length of the metal frame. So I balanced on that strip while they secured my head, hips and legs and stretched me. Hence, "the rack". Then they wrapped me in warm plaster bandages from hip to armpits and left me to dry. It was not a pleasant sensation. As the tight bandages dried and tightened even more I felt like I couldn't breathe properly.

A couple of weeks later we returned for the first fitting of the brace. Mum took one look at me and said, "Well you'll have a lovely hourglass figure when all of this is over, love".

The brace was a hip-to-chin affair, with a plastic girdle around my hips connected to three metal bars running up to a chin support around my neck. It was uncomfortable, awkward and definitely not discreet.

I had to wear it 23 hours a day. I can't tell you what a relief it was to take it off for that one glorious hour a day! Going to school for the first time was truly horrible. As a teenager the last thing you want to do is stand out. I felt horribly conspicuous and, of course, I was. Everyone stared at school and down the street. But I was very lucky to have a group of fantastic friends who took it all in their stride and got used to sleeping with my spiky brace at sleepovers.

Eventually, however, it was all for nothing. My curvatures worsened over the next two years until the specialist told my parents I would need an operation to put two big metal rods in my back.

The rods would be placed inside the curves, hooked onto the spine and ratcheted to straighten the spine. They had to wait until I had stopped growing to perform the operation. So when I was 16, mum, dad and I headed off to the city again.

The first person I met in the fourbed ward was an older girl, about 21 or so, who had just had her rods removed, telling us it was the worst thing she had ever experienced and not to do it. I didn't sleep that night.

When I returned to the ward after the surgery they had chopped off all of my spinous processes (the little knobbly bits on your spine), taken a bone graft from my hip to cement the rods to my spine and had a wound which ran from the bottom of my neck to the base of my spine.

I had a couple of drain tubes and a catheter and had to lay flat in the bed and log roll from side-to-side for a week. The pain was really very bad and reduced me to tears on a number of occasions.

I found the whole experience very difficult. I hadn't been suffering or in pain before the operation so it was hard to rationalise that this would make me better. At that point I would have preferred to turn into a twisted old question mark.

That was all 20 years ago now.

The rods are still in there. I don't think I'll ever have them removed.

The thought of going through that surgery again is too frightening.

My specialist's parting advice to me was to be careful when I fell pregnant and not to do nursing - oops! As a nurse and mother of twin toddlers I have my fair share of back pain. I have to visit the chiropractor regularly and I can see I will have problems as I age. I may yet turn into a question mark.

Oh, and I'm still waiting for my hour-glass figure.