No-one should go through scoliosis alone. With your help we can support people with scoliosis and their families
Having Scheuermann’s Kyphosis and scoliosis is something I've always been embarrassed and ashamed of, but looking back, I don’t really know why I should have felt that way.
My journey began in 2009, when I was 14 my family and I first noticed something was wrong with my back. We were on holiday at the time and my mom noticed my shoulders looked more rounded than they were meant to be and I had a hump on my back when I tried to touch my toes. After we got back from our holiday I went to see my GP, he told my family and I that there was nothing wrong with my back other than bad posture and that my low self-confidence could have caused me to stoop forward. He referred me to a physiotherapist and said that this would help.
After many appointments at my local hospital I was diagnosed with scoliosis and I was told to 'Get over the fact I’ll never grow anymore'. As we walked out of that appointment my family and I knew we needed a second opinion. After a lot of tears and being bullied for the way I looked I went into denial about my back and started to hide myself away from everyone including my family. We went back to my GP and demanded to go to the Royal Orthopaedic Hospital where we saw a specialist who told me I did have a slight scoliosis curve and a Scheuermann's Kyphosis curve. We had never heard of Scheuermann’s kyphosis before so it came as a massive shock. I didn't want to be any different from anyone else and I had many things on my mind after I walked out of that appointment. I was upset that no-one picked up on it before now and wondered why it had happened to me?
A year passed and I went to see a specialist again and have more x-rays. I was then told surgery was the only option for my back as now my Kyphosis curve was at 95 degrees, but at the time I was still in-denial about my back and adamant that I wasn't going to have surgery so they said they'd see me the next year. In that year my back got a lot worse, I noticed I could hardly do the things I loved anymore and I started to struggle sitting on chairs and fell over a lot. I was taking so much pain relief it started to have no effect. I rode horses as a hobby and I didn’t want to lose the one thing I loved.
Before my yearly check-up came around we had to make an appointment as I knew the surgery would have to happen. All I kept thinking was will I ever ride my horses again? I was told I would be able to ride again but it would take up to a year to do so. That day my name was placed on the surgery waiting list. I was nervous and scared of facing surgery but I knew I didn’t have a choice. It hadn’t been an easy decision to make. The thought that I could be paralysed scared the heck out of me but the fact my back could continue to get worse scared me even more so I knew it was for the best. It was a very stressful time for both me and my family but I was told the waiting list was a year. I was at college at the time studying equine which I wanted to complete before my surgery.
A few weeks after completing my college course I was given my one week notice and was told my surgery would be on the 6th August 2013. A week has never gone so fast! The run up to the surgery was filled with fear and worry of what could happen but actually I shouldn’t really have worried so much. My surgery lasted 11 hours in total and I have now got 2 two rods screwed into my spine from T1-L2. The journey through the surgery was physically and mentally hard and I remember what it was like to feel completely out of it, the feeling of wanting to give up, the feeling of having to depend on other people to do everything for me and then the initial fear and pain of having to learn to roll on my side, walk and sit in a chair with what felt like a table attached to my back at first is one that will stay in my mind forever.
There are some embarrassing parts I would like to forget but there were many good things that have come out of it. I am no longer in constant pain and no longer have to worry about the way I look or the fact that I was always out of breath. I am very grateful to the staff that looked after me in those 10 days and to my family and friends that have supported me and been there when I have needed them, I wouldn’t have been able to do it without them all!
Every day to start with at home brought on a new challenge. It took me several weeks to adapt to my new back and after a few minor set-backs with sickness, which I'm very glad has now been sorted I am slowly starting to feel myself again.
Although my journey was not over, as I had to have further surgery to trim one of my rods which was causing a lot of pain and discomfort, this surgery was only classed as a minor procedure but even so it knocked me back quite a lot. I was in hospital for 2 days after the surgery, it was a painful but I feel it was needed as I feel a lot better in myself now and my neck does not hurt half as much anymore. I still find doing some daily tasks difficult but I haven't regretted any of it. If I was told I would have to go through it all again I would do it without a doubt as I feel it has been one of the best decisions of my life.
I have now got back on my horse and had a walk round a few times although it felt odd I know I am one step closer to getting back to doing what I would have been doing before surgery. I can now start to do things normal 19 year olds would do although it is still difficult right now I know things can only get easier for me.
I have started to think of what I am going to do after I've fully recovered and I've thought of going back to college to learn more about horses. This is something I couldn’t have imagined doing before but now I feel the surgery has made me a lot more confident in myself and I'm ready to face new challenges and start living my life.
I am proud of my scar and proud of the journey I have been through, its’ a part of me and who I am today. I can’t thank my surgeons enough for giving me my life back and giving me my straight spine!
My story is just one of the thousands across the world who suffer from these conditions. I just want people to know it’s ok to feel the way I did and whichever route you take whether it be surgery or not you’re not alone and there are people that you can turn to as I wish I did sooner. I have made some great friends throughout my whole journey who have helped me tremendously. There is nothing wrong with asking or needing someone to talk to as it does help, I also started to write a blog to help others in the same sort of situation http://thehumpinthebendyroad.blogspot.co.uk/