3 in 100 are affected

Friday, 21 October 2016

I've always been of the mindset that we are only given what we can deal with, and attitude is everything.

It was 11 years ago. I entered the Southampton Hospital with my parents and my sister and I went down to the operating theatre for a 8 hour surgery that would change my life. I was 14, and I suffered from a condition called Scoliosis. Badly.
This is a condition which affects the spine, which in turn affects posture and internal organs. Scoliosis sees the spine twisted and bent, in varying degrees. In my case, my spine was so twisted that one of my shoulders was raised higher than the other and I could not sit or stand straight at all. I could barely walk for an hour without having a crippling ache in my spine that nothing could rid. My lungs were being crushed by my contorted spine and if I waited much longer they could have been cut off completely, meaning I could have died.
3 in every 100 people suffer from Scoliosis, some wont even notice as it will be so minor, but some will have to endure the same thing I did. I never really noticed it myself, as a kid you dont really look for that kind of thing. But I do remember my mum telling me to 'sit up straight', to which I insisted I was sitting as straight as I could. We brushed it off. Time went on and, as mentioned, I could barely walk without some kind of ache or pain seizing up in my back.

Eventually we visited my GP, who diagnosed me with Scoliosis right away, but without a proper X-Ray they were not sure of how severe my case was so I was told that I was told that I was going to have to wear a brace (or very, very tight corset) for 23 hours a day, for 2 years, to slowly - and painfully - straighten out my spine. I was distraught. I was at an age when fashion was becoming very important to me, I couldn't bear the thought of wearing an ugly brace under my clothing, and having everyone knowing I was 'deformed'. How could I participate in school sports, go swimming, or wear a tight vest top to the movies with friends, knowing that everyone would see what was underneath? I realise now how shallow this sounds, but at the time, it was very hard to accept. I was too young to understand the real consequences of my condition and, to be honest, I was more worried what people might think of me? A 14 year old wearing a corset - what sort of ideas would they get about me?!

I was referred to the hospital for an X-Ray so that my spine could be properly assessed, and it was decided that my case was too severe for a back brace, and that I would need corrective surgery. I was scared, but relieved. In my young ignorance I did't realise what a big surgery this was or how long it would take me to recover, I was just thinking about how I would be 'normal'. My only worry about the whole thing was that I would have a nightmare while under the anaesthetic and not be able to wake up.

Surgery day came. I was checked into the children's ward. Nil-by-mouth. A dreary hospital gown. I sat on the hospital bed as I was wheeled down to the operating theatre. My dad by my side. Only now did it dawn on me what was about to happen. I'd put it to the back of my mind thinking that I'd worry about it when it was here. Here it was. I didn't cry, I let my dad do that for the both of us. A numbing cream and a small needle were placed into the inside of my elbow. Cold fluid entered my arm. I spoke to one of the nurses about Busted and held my dads hand as I drifted off into a peaceful sleep.

10 hours later I jolted awake, throwing up into the nearest nurse's hand, missing the sick bowl by miles. I was sick on a mix of morphine and whatever other drugs were being pumped into me. A breathing tube in my throat, tubes and needles in my wrists, in my arms, in my neck. Every time I swallowed I could feel that damn tube pulling on my throat. I wanted it gone. I was in intensive care. There was an eerie calm, only the noises of heart monitors and other medical equipment. The odd cough here and there.
Soon after, my family arrived. Only 2 at a time allowed. Smiling faces and tears. It was all a blur, and still is. I heard a nurse tell my parents that I'd stopped breathing and gone blue. That explained the tube. My mouth was insanely dry but I couldn't ask for a drink, the tube stopped me from talking. I pointed at a cup of water. My mum wanted to give it to me but didn't know how. The nurse showed her. Dip a sponge on a cocktail stick into the water, and place it on my tongue. It did nothing. I was thirsty. I decided that enough was enough and tried to pull out the breathing tube. The nurse saw and did it for me. In all honesty, that was the worst part of the whole experience. Having that tube pulled up from my insides out. I stayed here for one night and one day, I think.

I was transferred to a high dependency ward which was, to be honest, a waste of time. It was over crowded and understaffed. My mum and I stayed here for the night, although it didn't feel like the night time. Lights were bright and people were loud. A nurse brought me some jelly and we didn't see anyone again for the entirety of our stay.

We moved back to the Children's ward. A friendly young nurse in a blue tunic introduced herself. Julia. She was to be my carer for my stay. I thought my time on the children's ward could be fun; TV, visitors, time away from school. I was wrong, I couldn't move from my bed, I couldn't even sit up. I had a catheter. I stayed like this for a week.
Visitors buzzed in and out, gifts were bought and magazines were read. Many grapes were eaten. My hospital bed was surrounded with cards and posters which my parents and sister lovingly hung for me. I had a constant morphine drip in my arm with which I could also get extra doses with by the press of a button every half an hour if I needed it. Looking around the room at the babies and children much younger than me, and seeing what pain they were going through, I decided that I didn't need it and wouldn't use it. I never did. 3 syringes of the most fluorescent and disgusting tasting liquid I've ever come across 3 times a day. Dressing changes were dreadful - soaked gauze sticking to my wound and the staples holding it together. But, it was necessary. I looked around the ward again, and got on with it.
After a few more days I was idle. I wanted to walk. Julia was pleased with my progress and agreed, but first, my catheter was to be removed. Pain and blood as it was ripped out. My mum held my hand. It hurt. It really hurt. Julia and my mum supported me as I was shown how to walk again. A small walk up the corridor and back. It was nothing, but it felt like everything to me.
My nights were filled with hearing babies crying and my days were filled with hearing babies crying. It was heart breaking. I didn't care if I couldn't sleep. I was lucky to know what was happening to me, unlike these infants, some of whom had known nothing other than hospital surroundings since birth. On day 4 I heard something I will never forget. The 2 year old in the crib next to me was born with legs bowed inwards. He had pins and rods in his legs to help straighten them out. That day doctors came to 'tighten' the screws. The little boy screamed in agony. He was 2. He didn't deserve this. He was brave, and so would I be. How dare I complain when an innocent infant is facing things worse than I am?

Finally, I was allowed to go home. Julia insisted I take a wheelchair down to the car waiting outside for me, but I was adamant otherwise. Once we got to the stairs I regretted my decision. My legs weren't strong enough to take me down stairs, but it was tough, I was here and I was going to do it. I did. By the time we got to the car outside I couldn't stand any longer and my mum helped me into the car. It was hard. I could no longer bend from the middle of my back, only my hips, so getting through a low car door was a difficult manoeuvre.
I had to remain laid down at home, so my mattress was set out on the sofa. School friends visited with gifts, homemade treats, letters, even mix-tapes.
After 3 more weeks a home visit nurse arrived to pull out my staples. And, that's exactly what they were - staples. You know how, at school when they would use that tool to pull the old staples out of the display boards? That's what they did on my back. It was agony, but I thought back to that little boy in the hospital and I got on with it. My staples (all 57 of them), their remover and my hospital bands stay in my bedside table as a reminder to what I have gotten through and how lucky I am.

In years to follow I watched a documentary about the very same procedure I had had done. The surgeon would detach muscles from the spine, cutting the nerves, screw metal rods to either side of the spine and then 'add bone' - bone dust taken from another part of the body, which would go on to fuse with the existing spine and the new 'instruments' to keep them all in place. Amazing. I still have areas on my back, shoulders and breasts where I have no feeling as the nerves did not connect together again, but that is nothing compared to what could have happened to me if I didn't have this surgery. My doctor saved my life. He was an amazing, skilled man.

I guess what I'm trying to do with this post is to spread awareness. Scoliosis may not seem like a big issue but it really can be, so if you think you or someone you know may suffer from it, please, get it checked out. It could be nothing, or it could save your life. Or perhaps, if you are facing this surgery yourself then I hope this post has answered some questions for you. We are so lucky to live in a time where surgeries and medications are readily available to most, and even though I do have some limitations now, I know that I am insanely blessed to have been given this surgery. If you would like to know more then please message or tweet me and I will do my best to answer any questions.

And, no - I dont beep when I go through the airport security checks.

1 comment:

  1. From Deza... I remember you being sooo brave.. And I remember how hard it was for you to come back to school, how fragile you still were... The worst thing is your not the only one I know who went through this.. My mum had two different operations to correct her spine, and still suffers now some days...

    Awareness is defiantly needed, because it's such a life changing condition... xxx so proud of you