My Scoliosis Story

I can't believe that this time five years ago I was still in hospital recovering from my seven hour spinal surgery. It feels like a lifetime ago. I went into hospital on the 1st June 2015, and came out a week later, on the 8th June. I was twelve years old at the time, and the experience was both physically and mentally exhausting, but looking back on it now, I'm sure I made the right decision in taking the surgery. I remember thinking, naively, when I was younger, that I would never have major surgery before a certain age, or wear glasses...I'm now nearly eighteen, and I have had surgery, and you very rarely see me without my glasses on! I think this proved something to me years later. It taught me that life is extremely unpredictable; you never know what's around the corner. I suppose you could call it tempting fate as well...In this blog post, I would like to share with you my experience dealing with scoliosis and what led me to take the surgery all those years ago.

Scoliosis is a condition where your spine twists and curves to the side. There are many varying degrees of it; some people will have a curve that resembles the letter 'C', and others will have two curves that resemble the letter 'S.' I remember one of my old maths teachers from high school making me laugh when he found out what I had been diagnosed with. He said he had an 'A' shaped spine...he was basically a comedian...Scoliosis mostly begins in children from 10-15 years of age, but it can also occur in younger children, and much older people. Its cause is mostly unknown, but in young adults, it is linked to growth spurts. My family and I had no previous knowledge of the condition when I got diagnosed, which is where the story starts. I was sat in front of the TV one evening, with my parents behind me on the sofa, and my Mum told me to sit up straight, as it looked like I was slouched over. I said that I thought I was sitting up straight, so out of simple curiosity, she asked me to stand up and came over to examine my back and shoulders. After having a look, she noticed that I seemed to have a slight protruding ribcage on the right side of my body, and decided to book me an appointment at the doctor's to get it checked out. I don't remember thinking much of it at the time. I just thought it was something and nothing, and at that age, I don't think I was particularly phased by a lot of things. But after going to the doctors, I was told that I needed to be referred to Preston hospital for an X-Ray. I still remember getting back in the car that evening, going silent, with a lot of different thoughts racing through my head. I wasn't told explicitly what was going on, which at the time only further enhanced my worry.

Soon after that, my Mum took me to Preston hospital where I was sent for an X-Ray. I was completely flummoxed when I saw the results. The image showed that my spine had curved away from its normal position, and was around 30 degrees different. As a twelve year old, I was quite terrified. I had no idea how it had happened, and I kept thinking of all sorts of possible explanations to its cause. Was it all the time I spent leaning over my laptop? How had I not noticed it before? Nothing was done specifically at that point. I remember later on being sent for an MRI scan at Chorley hospital to make sure that there wasn't any other underlying problems apart from the scoliosis itself. The MRI wasn't as bad as I had imagined it, even though I was in there for about forty minutes in total! My thoughts were still racing at this point, but oddly, I don't remember talking about it that much with my friends, or even my parents for that matter. Some part of me was trying to block out the reality. It just didn't seem real, and I felt like I was helpless to stop it.

Following this, we were back and forth at the hospital for many months in 2014, as I had eventually been transferred to Alder Hey's Children's Hospital. The problem progressed into the unpredictability of how much more it was going to curve, especially since I was still growing at the time. Due to this, the GP's couldn't make decisions until they monitored its progression for the following months. Most of the time, I still tried to pretend that it wasn't happening. My brain had shut off any possibility of surgery, which I had obviously thought previously was the only way of them correcting something so delicate inside my body. I was terrified of it, and in denial. They didn't say anything about me wearing a back-brace at the time, because my spine was at the point where this wouldn't have helped. It was just a matter of waiting...

My spine reached about 60 degrees at it's maximum. It was now considered to be a severe curve. It wasn't as if I was in any direct danger from this, but I had some very difficult decisions to make. The doctors at the hospital were fairly confident at this point that my main growth spurt was over. It was the right time to think about taking the option of surgery. As the months went on, I started to get achy pains on the side of my body where my ribs were protruding outwards, which came to be more painful than the spine itself. I could still do day-to-day tasks, but I had to stop my hobby of horse-riding around this time, because my body couldn't hold itself up in the correct position successfully. Still, I was adamant. I think we all were. The doctors didn't sugar coat the nature of the surgery; they had to be honest, it was a long, difficult procedure. It was, however, very common. My surgeon said that he often carried out two operations a week for people of my age. Did this do anything to ease my concern? Not really. He showed me pictures of other people who had the surgery, and how much they say they were glad they had it done. I was made aware of the risks on both sides. Leave it, wait a few more years to let the curve get worse, and face the risk of it seriously affecting my life in the future. Sounds like an easy decision then? It wasn't. The surgery wasn't pretty, and whilst I felt slightly comforted by the success rate, there was still an obvious potential for complications in an operation that long, and that risky. So what did I do? I didn't want to be paralysed for the rest of my life, but neither did I want to be hunched over in pain from an increasingly worsening spine in the future. Interestingly, I don't actually remember consciously making the decision, which, I may add, was entirely mine to make. My parents were happy to allow me to think about it and decide what I wanted to do. After a few weeks, I had made up my mind. I was taking the risk. I was having the surgery.

Despite it not being an entirely conscious decision, I know now, looking back, that at the time, I knew it was the right thing to do. I went to my pre-op, had my blood taken, had an ECG, and prepared for what was ahead. I've never liked hospitals, or anything to do with blood, needles, and machinery. I don't suppose anyone does really. But I grit my teeth and bared it, convincing myself that this was the right thing to do. Finally, the time had come. Before I left high school for May half-term, I got a lovely surprise in my form room; everyone wishing me the very best for the next few months, all my friends were there gifting my cards, sweets, and cakes. I was amazed, and so immensely grateful. I was going to miss them all. I spent a week in Cornwall on holiday before that day, which I have to say, was great in allowing me to relax, but I was filled with a certain amount of trepidation, knowing exactly what was coming up. I knew I couldn't put this off; it had to be done.

Anyone who has had their blood taken by a nurse, and a doctor, knows which one does it better...the day before I went for the surgery, I had more blood taken, and the doctor spent about half an hour trying to find my vein. So that wasn't a great start. I obviously couldn't eat anything that evening, but I don't remember feeling very hungry anyway. I went to sleep, anxious, watching Doctor Who beforehand to ease my nerves. The morning came. It was time. I was going through at nine. My heart was pounding, and I was shaking. I couldn't back out now. It was like being trapped. I didn't know what was going to happen. I was given a pink liquid drug in a syringe around this time, which tasted like spicy strawberries (there was a lot of the stuff!) and it was supposed to calm me down before I went under...they said they had never seen anyone react to it like I had before. Calm? I wouldn't say so. I certainly wasn't bothered by what was happening to me after that though. I felt absolutely high as a kite. Looking back on it now, it still makes me laugh. I was laughing at everything. My parents were laughing. Even the anaesthetist was laughing. I was told that I was saying absolutely all sorts. Something about "If I was at school right now, I would be throwing things around..." I was just completely out of it, and I was immensely glad. It was better for my parents too, who were filled with as much worry as me, but felt peaceful as they saw me smile before I slowly closed my eyes.

And just like, I was awake again. It really is true that you have no idea how much time has passed when you've been under anaesthetic. It's like being knocked out unconscious. I could hear voices around me, but I couldn't see anything. I didn't feel like I could open my eyes. All I remember hearing was my surgeon talking to my parents after a short while, telling them that everything had gone extremely well, and with that, I put my thumb up, the only thing that I could muster. I felt very peaceful upon hearing that, and soon slipped back into sleep. Upon waking up, all I could think about was water. I don't think I had ever been so thirsty. My parents were there, and I could slowly open my eyes now. I noticed I had many wires attached to me, including my morphine drip for pain relief. As the days in my recovery went on, I faced a lot of challenges. Most of the time I wasn't hungry. I was content to lay back in bed and replenish on liquids. My parents stayed with me in the evenings; they took turns. I don't think either of them seemed pleased about it, and I can't say I blame them. The bed didn't look very comfortable! The pain was manageable, but I have to say that the pain came mostly from my ribs (I was told that during the procedure they had to take a couple of my ribs out in order to fit the rods in place on either side of the spine) Not to mention I had some other issues as well...It turned out that my leg stockings were digging into my skin, which I can tell you was extremely painful. Once that had been sorted, I had a mark on my leg that lasted months. I also had a very (not pleasant) urine infection induced from my catheter. Fun and games. To make up for this though, I had a lovely visit from my best friend, Leah, later on in the week. It meant that we could turn the football off the TV, that my Dad had put on, which was great. I had woken up from a daze after visiting the showers that day. (My Mum had done everything, but even the notion of getting up and walking there was exhausting) So seeing Leah when I woke up was a lovely surprise. After adamantly saying that I didn't want to stay in hospital for much longer, I proved that I could sit on a chair for as long as it would take to get home in the car, and I was discharged on the 8th June.

It was great to be back at home again. Salem stayed by my side most days, almost as if he knew I needed a bit of extra help, bless him. I saw Leah almost every day, as she would come round after finishing school, and we would watch Doctor Who. My chair at the lunch tables was always saved during the time I was away...Leah made sure that no one else sat there! I didn't go back to school that year, apart from a couple of days just before we finished, and I spent the last day with the rest of my friends at the park. Thirteen weeks I had off, which gave me time to get my strength back and get myself back to normal. I still remember feeling quite a lot of back pain even in October of that year when I was sat on the chairs in the science labs, but I persevered, and didn't back down. I never back down from a challenge.

My final appointment with my surgeon took place a couple of years later, where he signed me off, and wished me the very best for the future. I was incredibly grateful for everything that the team had done to ensure that the surgery was a success. My shoulders were also now nicely aligned, and the spine was healing around the new titanium metal well. It was the best result that I could have asked for. My friends still made jokes about me being magnetised to every piece of metal I came near...It would never happen, I told them. Now, five years on, I'm surprised about how little I think about my operation. It was a huge procedure and achievement, but I think it just proves how I made entirely the right decision; I can live my life exactly how I would have done. I still get a little bit of back pain every now and again when I sit in the same position for too long, and my ribs still stick out slightly, but that's part of what makes me who I am. I fought the battle, and won, and I will always remember the strength it gave me, and take it into my future. Life is unpredictable, but strength and perseverance goes a long way in ensuring that unpredictability is faced head on, and this was my story.

My 60 degree spinal curve

My spine following surgery