Friday, 30 September 2016


I've seen a lot of vlogs entitled "story time" lately, as a way for content creators to share a more personal story and raise awareness for a particular issue/condition that they have experienced. So, I wanted to do that same for something that I have had first-hand experience with.

What is scoliosis?

Scoliosis, the abnormal twisting and curvature of the spine, is a progressive medical condition with no cure. It affects approximately 1 in 35 people and often presents itself, or worsens, during the adolescence growth spurt and is more common in females than it is in males. It's not uncommon for people with this condition to experience no/very little pain and require no treatment at all. However, if left unchecked scoliosis can result in lifelong surgeries, disability, chronic pain and in some rare cases it can be life threatening. 

There is very little awareness for scoliosis considering the amount of people that are affected by it, because of that, I wanted to share "my story" to help shed some light on it. 

My diagnosis

I was first diagnosed with scoliosis back in 2014 after I started running at the gym. I was experiencing lower back pain so went to the GP, thinking it was a nerve issue or a badly pulled muscle. After the standard 'Adam's forward bend test', I was referred to the local hospital for an x-ray to confirm and measure the degree of my curve. As you can imagine, this came as a massive shock to me and my family.

At the hospital(s)

After my initial x-ray I was told I had a 31º lumbar curve with a minor thoracic curve and that the likelihood was, i'd had the curve since I was about 12 years old and that it had been slowly progressing since. Since this appointment i've been back and forth countless times for check up x-rays and as i'm one of the 'lucky' ones that suffer with chronic pain in my lower back, hips and left leg I was sent for an MRI at the end of 2014. My MRI was an awful experience, I was in the 'tunnel' for about an hour and a half with my head between 2 blocks and the noisiest machine you can imagine! It was uncomfortable and really boring!

Following on from my MRI it was discovered that I have a protrusion on the bottom vertebra of my spine which is putting pressure on my nerves. I was given an epidural injection in the May of 2015 in an attempt to help the pain in my leg caused by the protrusion, it helped for all of about 6 months! The injection was classed as a day surgery and was given under general anaesthetic - sitting around in the hospital for 6 hours waiting for a 30 minute procedure was dull af!

I was seen again at the same hospital by a different doctor (who was a complete twerp!) who decided that there was nothing more that could be done and discharged me. By this point, I was disheartened and still in a lot of pain.

To our surprised however, I received another letter sending me back to the same hospital where I was later referred to a specialist at a different hospital! I was sent for another x-ray where they read my curve at 41º from T11 to L4 and that I was about 5cm out of alignment (meaning my head and pelvis don't line up at all!) - as a rule, if a curve is larger than 40/45º surgery is often considered(!). Hearing that the curve had progressed significantly was again, a big shock as I was fully aware that most adults with scoliosis don't see progression in their curve.

My consultant decided that the best solution at the time was to monitor the curve for 6 months and see if it was still progressing. So, fast forward 6 months, i've been back to the hospital for another x-ray which unfortunately didn't give me the results I was hoping for. My consultant reviewed the x-rays and confirmed that my curve is still progressing albeit at a slow rate of about 1º every 6 months. He explained that 2º every year would be a massive increase by the time I was 40ish and suggested that I go through with Spinal Fusion Surgery to stop it in it's tracks.


The surgery

I'm currently waiting for a letter through the post with a date on it for now but i've done my research! 
Without going in to the gory details, essentially, the surgery is either done anterior or posterior and my consultant predicted that mine would be an anterior surgery. This means that they'd "go in" from the side rather than the back. Ultimately, what they do is take a bone graft and then fuse some of the vertebra before rodding and pinning it. There a very few long-term effects of having the surgery, other than the obvious (stiffness & inability to slouch!) there are only 3 things I won't be able to do.. bungee jump, sky dive and trampoline. 
Obviously, everything I know is from the research i've done and not from my surgeon. I'll know more when I get my pre-operative appointment.

So what are the day-to-day affects of scoliosis

Everyone is different, but personally my biggest upset with the whole thing is the pain that I suffer with everyday. Since my diagnosis, i've learnt how to deal with it using over-the-counter pain killers and on occasion some stronger stuff! As i'm out of alignment, I tend to put all of my weight on my left leg, which leaves me with immense pain in my hip and a constant ache down my entire leg - particularly the joints. Being out of alignment also means that i'm forever stumbling all over the place/into people when i'm walking and on top of all of that it tires me out very quickly. Simple things like going shopping with the girls, is knackering and i'll be forced to sit down through pain and fatigue. 

Other things like washing the dishes is a painful task, the act of bending slightly forward over the sink leaves me with back ache. Sitting cross legged for any length of time is out of the question too!

"Luckily" for me, my shoulders are pretty much the same height (a common symptom is misaligned shoulders) which means that most people don't notice that there's anything different about me. However, the psychological/emotional struggles that come with having scoliosis can be really hard. I've been fortunate to have friends and family around to support me and so haven't suffered with this too much!

Although I don't have misaligned shoulders, I do have slight uneven musculature on one side of my spine giving me a 'hump' which has also bothered me greatly. Despite people saying they've never noticed it until it's pointed out, it's the one thing that i'm really conscious of.

I don't have a really prominent "hump" but you might be able to notice the slight uneveness.

What to look out for

As I said at the beginning of this post, I wanted to share "my story" to help shed some light on the condition and to encourage people to look out for the signs and symptoms. 

I'd personally never heard of scoliosis before I was diagnosed with it, it's not very widely spoken about so here's a list of things to keep an eye out for:
  • Pain in the back, shoulders, legs and neck
  • Rib prominence or a prominent shoulder blade - caused by a rotation of the rib cage
  • Uneven hips, arms or leg length
  • Uneven musculature on one side of the spine
  • Clothes not sitting properly
The earlier the curvature is caught the more that can be done to prevent it from progressing. 

If you want to read more information on scoliosis have a read of this or drop me message and i'll help where I can. 

1 comment:

  1. Thanks for sharing!!!
    Your story was really encouraging and I appreciate your efforts.Sharing the symptoms was really helpful and I hope a lot of people are benefited by this post.
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