Scoliosis Awareness Day 2017: My Scoliosis Story

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It’s International Scoliosis Awareness day on Saturday and so I thought it would be a good time to share my own scoliosis story.

In July, it will be 7 years since I had my scoliosis surgery.

I was diagnosed with adolescent idiopathic scoliosis back in 2000 when I was 14 years old. My parents had noticed that I had one shoulder higher than the other and took me to the Dr’s to check it out. I had also noticed some other odd things around this time, such as my rib cage digging into chairs when I sat down and my ribs sticking out at the front on one side. At the time, I didn’t realise what it was, or that these things could be connected. When I was diagnosed it was a huge shock. I went from being a normal, healthy teenager to potentially facing serious spinal surgery.

Unfortunately,  when I was diagnosed, I was told that my scoliosis was classed as severe. I had two curves in an “S” shape that were both well over 70 degrees (anything over 50 is considered as severe). At this point, I had finished growing and so it was too late for non-surgical methods such as bracing. They told me that I needed spinal surgery to correct the scoliosis, mainly to stop progression and further problems in the future.  I remember looking at my X-ray on the screen and just bursting into tears – how could this be happening to me?

As I had finished growing and I wasn’t in any pain at this time, we decided on the “watch and wait” treatment option. This was mainly because  I was terrified of the prospect of surgery. It involved yearly appointments with a specialist who took X-rays and basically monitored it to make sure it wasn’t getting worse.

During this time, I tried to get on with life. I went to University and got a degree but it was hard for me to forget about my scoliosis. During this time, I was deeply unhappy and I think to be honest I fell into a depression. I hated how I looked with a passion and did everything I could to hide my back from others. It affected my self confidence and self-esteem big time. I thought about my back 24/7 and was constantly stressed that it would progress and get even worse.

When I was about 21, I started to get severe muscle spasms around my lumbar curve, pins and needles in my upper back and horrendous back pain. I coped like this for a few years and tried everything for the pain (physio, acupuncture, exercises, swimming, Pilates, painkillers – you name it!) but nothing helped. I’ve lost count of the times during these years that I spent crying because of my back and the pain. I didn’t want to go on like that for the rest of my life.

For this reason, I eventually decided to do some research into the surgery. I read A LOT and spoke to people who had been through the surgery and come out the other side. This was invaluable and made me realise that if I did decide on surgery, maybe there would be some light at the end of the tunnel.  After A LOT of stress, turmoil and tears, I eventually got put on the waiting list for the surgery. I had to wait over a year, which was pure hell. I struggled with anxiety big time during this time as I waited for the date to get closer and constantly stressed about whether I was doing the right thing or not.

On 29th July 2010, at age 24, I eventually had my scoliosis corrective surgery. My spine was straightened with two titanium rids and 20 something screws and fused in a straighter position. The surgery itself took 11 hours, I was in hospital for two weeks, off work for about 6 months and it took me around a year to fully recover.

 

It was a major operation and recovery was painful and one of the toughest experiences I have ever been through. After the surgery, I had to learn all the basics all over again. I couldn’t even sit up by myself to start with and I had to learn to walk all over again.

My mum took two weeks off work to look after me at home. To start with, I couldn’t do much for myself and I had to have help with everything, including washing and dressing myself. I also had to learn how to adapt to all the metalwork in my spine. It did feel strange at first (like I had a wooden board strapped to my back!) but over time, I got used to it.

I was very lucky that my surgery was a success and I’m so grateful to my surgeon and to the NHS that I was able to have the surgery.

Today, 7 years on, I am without a doubt much happier. I am more confident and I don’t worry or stress about my scoliosis anymore – I just get on with my life. Yes, I still get back pain and I have good and bad days when it comes to this. But it is nowhere near as bad as it was before my surgery and it doesn’t stop me from living my life.

I have achieved many amazing things since recovering from my surgery including travelling to wonderful places, completing a Master’s degree with distinction, running races, climbing mountains and much more.

 

I am proud of my scoliosis and I wouldn’t change it for the world, as it has made me who I am today – strong and determined and able to appreciate life and all the things I can do.

Now, 7 years later, I am doing two things that I never thought I’d be able to do post scoliosis surgery in a bid to raise awareness and money for the Scoliosis Campaign Fund.

British London 10K

 

On July 9th, I am running the British 10K. This will involve a flat, fast 10K through London’s most famed sites.

Great Wall of China 9 Day Trek

 

In October, I will be taking on a massive challenge with a 9 day trek on the Great Wall of China. This will involve 9 days of hiking on challenging and uphill terrain.

Through these activities, I want to raise awareness of scoliosis. But not only that, I want to inspire others who are suffering with the condition and show that having scoliosis doesn’t have to stop you from achieving your dreams.

The Scoliosis Campaign Fund raises money to support people with scoliosis and their families, and fund research into finding the causes of scoliosis and treatments to improve quality of life for patients.

Through Virgin Money Giving, you can sponsor me and donations will be quickly processed and passed to charities. Virgin Money Giving is a not for profit organisation and will claim gift aid on a charity’s behalf where the donor is eligible for this. I really appreciate all your support and thank you for any donations.

Thanks for reading! 🙂

Share your own scoliosis story on my blog and help me to raise awareness of scoliosis!

Louise X