Blake’s Story

16½ years of age at surgery
Initial thoracolumbar curvature of 37 degrees that progressed to 49 degrees over 5 months

I had just returned to the Little Athletics season when I was finding it difficult to run my favourite 1500m and 3km events. The muscles on the left side of my back were spasming which was becoming quite painful. My mum noticed that my running style had changed and my left shoulder was slightly dropped and upon lifting my shirt saw that my spine was curved.

After a general x-ray at the GP, I was told that I had scoliosis and needed referral to a specialist. It was suggested that we do this as soon as possible as I was going through rapid growth spurts (19cm in 11 months) and my spine needed monitoring. Over the next 6 weeks I met my specialist had more x-rays, MRIs and bone scans. A 37 degree curvature of the thoracolumbar region was diagnosed.

Unfortunately, over the next 5 months my spine deteriorated to a 49 degree curvature and it was becoming very noticeable with my shoulder dropping even further. It was explained that by performing surgery now it would be less traumatic on my spine and spinal cord before the curve progressed any further. I postponed my athletics career and went back to swimming in the hope that the fitter I was before the surgery, the better I would recover.

It was not the best time for surgery since I had just completed my first term of year 11. Surgery was scheduled for the April school holidays with the thought that I would only miss 4 weeks of actual school time. Before the surgery my mum and I did a lot of reading and met with a great physiotherapist who visits patients in the hospital after their procedures. He took me on a tour to the ward and Intensive Care Unit and gave me a rundown on what to expect when I woke up from surgery. The scariest thing was the ‘fear of the unknown’ so asking my specialist lots of questions was invaluable.

After a false start and a cancelled surgery due to a tiny graze on my back I eventually had my surgery a few weeks later. I remember waking up in ICU after 4 ½ hours of surgery with tubes and catheters everywhere just as it had been described to me. I was now fused from T11-L3. Morphine became my new best friend. I would watch the clock timing when the nurses were coming to roll me on my side, pressing the button in anticipation. I did not like to press the morphine button too much but I soon worked out that it helped with the pain if you used it at regular intervals rather than waiting for the pain to come.

Two days later I was out of ICU and ready to stand up. I was extremely nervous to stand up for the first time because of the thought that stitches would pop and everything would fall apart. I became nauseous the first few times I tried to stand up and walk and had to sit down again. The more times I walked the easier and more confident I became. I had the spinal drains and urinary catheters removed on day 4 or 5 and after that I did not look back.

My iPod, music, Facebook and social media were my links to the outside world. Every night I would post my status on Facebook and we would all chat. I eventually posted a few photos of my surgery also. My friends liked this because when I went back to school it made it easier for them to understand what had happened.

After 7 days in hospital I had the dressings removed. My mum took a photo of the wound for me so I could see what it looked like. Besides the redness due to an allergic reaction to the sticking plaster the wound was really neat and my spine definitely looked straighter. I was able to walk unaided from the hospital 3cm taller than when I went in. The car ride home was a bit uncomfortable but we timed my pain relief and just laid the front seat back and put a pillow around to help.

I spent the next few weeks at home, mainly sleeping, watching DVDs and trying to catch up on my school work. At the start I found it very difficult to sit for more than 20 minutes or so but by 4 weeks post-op I was back at school part-time. I was no longer taking any pain relief medication and I was starting to feel normal again. My year coordinator arranged room changes for me and my other teachers organised my text books to be loaded on my laptop. This made it a lot easier to carry things. By 6 weeks I was back at school full-time.

I returned to my specialist 6 weeks post-op and everything was looking great and my life was relatively normal again. Unfortunately, at the 11 week mark, the unexpected happened. I was sitting in study period at school when I moved and heard a really loud POP. I knew that it had come from my back but I was not experiencing any pain so I was not too concerned. My mum phoned the specialist to enquire if this was normal and he sent me for a follow up x-ray to make sure everything was alright. Unfortunately it wasn’t. My specialist phoned my mum that night and explained that there is a great force on the spine in the initial 12 week healing because it wants to twist back. My spine had also begun to curve above the metal hardware so the rod had become detached from the screw at T11 and it needed to be repaired. I know that sometimes things just happen so within 24 hours I was back in hospital, frustrated, annoyed and a little bit frightened. I was not sure whether it was a good thing or not, knowing what to expect this time round.

After 4 hours of surgery my spine was fused up a further vertebra to T10. I found myself in a lot more pain this time. I was told that this was because the nerve endings to the area had not fully healed from the initial surgery, causing me more discomfort. I found most things so much harder and my recovery was nothing like the first time. I stayed on the morphine drip for 6 days and had to take extra medications to stop my nausea, vomiting and skin rashes. I was really reluctant to walk thinking that I would have a “screw loose” again. After 5 days I was slowly walking with the frame and by 8 days I was on my way home again.

Recovery was longer this time. I missed a further 6 weeks of school and was doing most of my assessments at my own pace via email and virtual classrooms. I was unable to physically sit my half-yearly (1st surgery) or yearly exams (2nd surgery) so my specialist arranged medical certificates and the school organised exemptions. At times I became frustrated over the whole situation and found it difficult to see the light at the end of the tunnel.

I am now 7 months post-op (2nd surgery). I sometimes feel like I am still on a rollercoaster but with not as many dramatic ups and downs. I was initially very hesitant to do “normal” things but recently went back to athletics and swimming and also managed to get my Ps. Catching up on school work has been a bit difficult but the school has been very helpful. I am now in my HSC year and have a part time job in photography. I can’t really say that I feel completely normal yet but I am happy, taller, straighter and pain free. Twelve months ago I knew very little about scoliosis and we had never heard of a screening program. I now know a lot more and have the scar to prove it.