Scoliosis Awareness Day 2017: My Scoliosis Story

Scoliosis Awareness Day 2017: My Scoliosis Story

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.

Scoliosis - back before surgery
Scoliosis – my back before 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.

Scoliosis X-rays
Scoliosis x-rays -before and after surgery

 

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.

Scoliosis scar after surgery
Scoliosis scar after 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.

Scoliosis Awareness Day 2017

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.

Scoliosis Awareness Day 2017

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

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

Great Wall of China

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.

Make a donation using Virgin Money Giving

Thanks for reading! 🙂

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

Louise X

International Scoliosis Awareness Day 2017

International Scoliosis Awareness Day 2017

Did you know?

June is scoliosis awareness month and Saturday 24th June 2017 is International Scoliosis Awareness Day! So make sure you put that date in your diary 🙂

The day will soon be here and the Scoliosis Association have now launched their 2017 campaign #gotyourback17. You can download some posters and a fundraising pack from their website here: International Scoliosis Awareness Day 2017.

Throughout June, I have lots of content planned for this blog to help raise awareness. I plan to blog and tweet facts about scoliosis, as well as share more about my scoliosis story.

It would also be fantastic to guest blog on other people’s blogs and I would love to feature some scoliosis stories on my blog.

If you would like to be involved and feature your scoliosis story on my blog, please get in touch.

I would LOVE to hear from you. Let’s help spread the word about scoliosis!

To get involved and share your story, simply email me at helpformyscoliosis@hotmail.co.uk, fill in this contact form or comment below. 🙂

Louise X

P.s. Don’t forget to subscribe to my newsletter so you don’t miss out on any posts about scoliosis awareness day! You can also follow my blog posts on Bloglovin’ and on Pinterest.

 

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ISAD, Saturday 25th June, 2016 #scoliosisgotyourback

Scoliosis Association UK

Saturday 25th June marks International Scoliosis Awareness Day (ISAD)!

To help raise awareness of scoliosis, the Scoliosis Association UK are running a very special campaign this year called “Got Your Back” – you can support the campaign in various exciting ways including organising fundraising, purchasing campaign merchandise or simply changing your social media profile picture to the official logo.

Full details of the campaign and ways to get involved are here:

http://www.sauk.org.uk/get-involved/international-scoliosis-awareness-day 

Help raise awareness of scoliosis by getting involved today – tweet using the hashtag #scoliosisgotyourback 


Louise X

International Scoliosis Awareness Day 2015 #ISAD15

Saturday 27th June marks International Scoliosis Awareness Day, so I thought I would share my own scoliosis story to help raise awareness of this (surprisingly!) common condition.

When I was 14, I was diagnosed with scoliosis, a sideways curvature of the spine, after my dad noticed that my shoulders were uneven.  Unfortunately for me though, when my scoliosis was diagnosed, the Drs discovered that I actually had two spinal curvatures (in an ‘S’ shape) and both curves had already progressed to over 70 degrees, which is considered to be ‘severe.’

The one benefit was that, despite their severity, my scoliosis curves were relatively balanced and so were not that noticeable to the untrained eye, which is why I think they were spotted so late in my case.

I was so terrified of the surgery that I endured 10 years of living with two large scoliosis curves, this resulted in considerable back pain and discomfort, severe muscle spasms and breathing problems, not to mention the emotional trauma of living with a very noticeable ‘rib hump,’ which was caused by my spine pushing on and rotating my ribcage.  As the pain got progressively worse, I was told that my curves were progressing and would likely progress year by year as I got older, which in itself could also result in breathing and heart problems in the future.

Eventually, as a result of increasing pain and discomfort, I got put on the list for surgery and had to wait over a year, before finally having corrective surgery five years ago on the NHS. At the time of surgery my curves had progressed to over 80 degrees.

The surgery was 10 hours and involved my surgeon straightening my spine as much as was safely possible, fusing my spine with bone from my ribs and inserting two titanium rods and a whole lot of screws to hold the correction in place whilst the bone fused. I also had a ‘costoplasty‘ procedure at the same time, which involved the surgeon breaking and removing sections of several of my ribs to improve the appearance of my large “rib hump.” This was a painful surgery with a very painful and long, uncomfortable recovery, including 6 months in a back brace, lots of strong painkillers and intensive physio.

Scoliosis X-rays
My scoliosis – X-Rays before and after surgery

Due to the severity of my scoliosis, my spine will never be ‘straight’ but my surgeon did an amazing job and I cannot thank him enough – he changed my life for the better. If you were to look at me today, you would never know that I had scoliosis and had been through everything I have, and sometimes, I even forget myself. Now, I rarely get bad back pain and the only giveaway of my condition is the impressively long scar down the centre of my back, which I am incredibly proud of.

Scoliosis Scar
My back and scar today – 5 years post op!

I’m also proud of how far I’ve come, as when I was lying in that hospital bed, barely even able to sit up or get out of bed by myself, I never imagined that once recovered I’d continue to travel the word, climb a mountain, run a 10K race, complete an MSc with distinction or walk 26 miles for charity – just some of the things I have achieved post surgery.

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Me post surgery

This condition has never held me back and I think going through scoliosis surgery has made me appreciate everything I can do, as well as given me the determination to continuously push myself.

More awareness of this condition is needed because if scoliosis is spotted early enough when the curves are small, it can be treated through physio and bracing and sometimes, surgery can even be avoided.

Scoliosis Awareness
Photo from Facebook: SHIFT Scoliosis

It’s important to realise though that every case of scoliosis and scoliosis surgery is different. Find out more about scoliosis and how you can raise awareness of International Scoliosis Awareness Day here.