Scoliosis & Me

As I stood in my bikini at 13 years old examining my reflection in the mirror, I had no idea that what I saw was anything to be concerned about. Nor did I realise at 14 years old, when the doctor looked at my body and said “scoliosis”. I had no idea that, at 21 years old, I'd have a letter on my fridge reading: “31st October, 2017: Spinal fusion surgery”. But now, here I am, counting down the days until my spine becomes part-bone, part-metal.

What is scoliosis?

For those of you who might not have heard of it (I hadn't), scoliosis – pronounced sko-lee-o-sis – is a medical condition “where the spine twists and curves to the side”.

 

I have one curve in my upper spine, and another in my lower spine, so my spine is actually an ‘S’ shape. (Below is a photo of my X-Ray to show you what I mean!) The upper curve is less severe, while the lower one actually rotates as well as curving. It also affects the position of my hips, which means that one of my legs has grown slightly longer than the other.

Scoliosis isn't always necessarily a ‘bad’ condition, and it's *definitely* not one that often requires surgery (so don't let a diagnosis cause instant panic!). It can cause pain, difficulties and more serious problems (for some people, it can crush bones, organs and lungs), but it's different for every person. It often depends on certain factors, like how big the curve is, and where in the spine it is. 

Some quick facts:

·         Scoliosis affects 2-3% of the population (that’s 1.6 million people in the UK)

·         Less than 10% of those will develop scoliosis that requires treatment

·         Less than 0.1% of those will require surgery

·         Scoliosis is most commonly diagnosed for the first time in children aged 10-15

·         20% of people with relatives who have scoliosis also develop the condition

·         80% of all scoliosis cases have an unknown cause

·         Scoliosis is more common amongst girls than boys

There are a few different types of scoliosis. It can be something that you’re born with, something that develops in old age, or something that’s caused by a separate nerve or muscle condition – but I have the most common type, known as Adolescent Idiopathic Scoliosis.

‘Adolescent’ means that the curves seemed to develop when I hit puberty, and ‘Idiopathic’ means that there's no known cause or explanation for why this happened.

Diagnosis

I'm not really sure exactly when my scoliosis started developing, but I was diagnosed at age 14. I had been experiencing back pain, but this wasn’t what prompted my mum to take me to the doctor. What triggered the doctor’s visit was spotting that I had two noticeably uneven hips.

My family and I were on holidays in Portugal, and I’d packed a couple of bikinis for the pool. When I was stood in the mirror one day, I noticed how asymmetrical my hips were.

I didn’t think anything of it – I just found it quite amusing, and assumed that they’d probably even out as my body developed. But, when I pointed it out to my mum, she wasn’t so sure.

When we went to the GP, I was asked to bend over and try and touch my toes – not because she was testing to see whether I could reach them or not (thank god, because I definitely can't!), but because this allowed the doctor to examine my back. This is known as the “Adam’s Forward Bend Test”, where doctors will check for signs of scoliosis such as:

·         One shoulder or shoulder blade appearing higher than the other

·         Rib cage appearing higher on one side

·         One hip appearing higher or more prominent than the other

·         The waist appearing uneven

·         The body tilting to one side

·         One leg appearing shorter than the other

This isn’t always a fool-proof method of spotting scoliosis – some people’s backs may look okay when they actually aren’t – but it might be something worth trying out at home if you suspect that you or your child may have it. Just make sure you see a medical professional if you think that something is wrong!

The doctor confirmed that I had scoliosis (which meant absolutely nothing to me at the time), and then referred me to the hospital for some back X-Rays. It wasn’t until I was shown my X-Rays that I started to get an idea of what was going on with my spine (and finally understood why I experienced so much back pain!).

From a spinal X-Ray, every scoliosis patient should be given a measurement of the size of their curve, which gets measured in degrees. If I'm remembering right, I think I was given a measurement of a 12 degree curve in my upper back, and a 21 degree curve in my lower back. Anyone with a curve above 10 degrees is considered to have scoliosis, but curves under 20 degrees are considered mild.

At first, I was just told that I would be called into hospital every 6 months for more X-Rays to monitor my scoliosis. (This is particularly important when you’re still growing, because the likelihood is that, as you grow, the size of your curve will, too.) I was also referred to a physiotherapist (not to help with the curve, but to try and help with my back pain) – but eventually, stubborn, impatient, lazy teenage-me got bored of the whole thing and gave up on it.

***

Things changed when I turned 15. I went back to the hospital for my usual X-Rays, and then to discuss them with my doctor. But she looked concerned. “Your spine has progressed a lot since last time,” she said. “You’ll have to be fitted with a brace.”

Treatment: Back brace

The hospital referred me to an Orthopaedic Centre so I could get more specialist care for my scoliosis. While I waited for this, I had a cast of my back taken at the hospital, so I could be fitted for my back brace.

A back brace is most typically used to treat scoliosis patients who are still growing. It can’t be used to reduce their curve(s), but the hope is that it might prevent the scoliosis from getting worse as the patient grows.

The brace is custom-fit to their body and is made out of a hard plastic. The idea is that it will put pressure on the parts of the spine that are curving, to try and limit or stop its progression. I was told that I would have to wear my brace all day, but could take it off to sleep.

I was allowed to choose the colour of the straps for my brace, and apparently 15-year-old me 
thought a mix of pink and purple was a great idea. I have a feeling it won't catch on, though.

Treatment: Spinal fusion surgery

Turns out I never needed that back brace. I think I’d only worn it at home for a day before attending my appointment at the Orthopaedics Centre and having my X-Ray examined by the specialist.

“It’s too late. That’s not going to do anything for you,” he told me. He measured my lower curve at 43 degrees, and said it was too severe and too late in my growth for the brace to have any effect.

When I was first told that I qualified for spine surgery, I wasn’t scared – I was actually happy. I thought that sounded great – an answer to all of my problems! (Needless to say, I was a little bit naïve.) I thought the surgery would give me a normal body, get rid of my back pain, make me stronger, and lessen my limitations. I remember thinking “wow, I’ll actually be strong enough to pick up my future child without my back hurting”. But it turns out, none of those things are guarantees.

As my surgeon explained, the main aim of this surgery isn’t to put an end to my current problems – it’s to stop them from getting worse.

Once someone’s spinal curvature reaches a certain size, it’s likely to keep getting bigger throughout the rest of their life – particularly as they get older and their bones get weaker. Spinal fusion surgery aims to stop that.

How does the surgery work?

It involves straightening out the spine as much as possible before fusing the bones together to try and prevent the spine from re-curving.

To hold the bones in place while they fuse together (which actually takes 1-2 years!), two metal rods are placed on either side of the spine and attached using metal screws. As long as they don't cause any major problems, these rods and screws should remain in your body for the rest of your life. 

You can actually watch videos of the surgery on YouTube, but I wouldn’t recommend
watching if you’re squeamish!

My fusion is only going to be done on the curve in my lower back, due to my upper curve not being as severe. (I think it's currently just over 20 degrees in size.) Surgeons generally aim to operate on as little of their patient’s spine as possible, because, unfortunately, spinal fusion surgery limits motion. (There are other surgical options available to treat scoliosis, but none on the NHS/in the UK.)

Operation day

As my consultant could see from my X-Rays that I’d almost finished growing at 15, he said that I could wait until I was 18 and finished with school before getting the surgery. (Like I said, scoliosis is likely to get worse as you grow. The fact that I didn’t have much growing left to do meant that mine wasn't likely to get much worse in that time-frame.) 

When I finally did turn 18, it was a bit of a faff finally getting to that point – more X-Rays, an appointment to discuss the surgery, an MRI scan, a lot of waiting around... I was in university by the time I was told it would go ahead. My consultant said he’d make sure my operation was in the summer, so that the majority of my recovery time could happen over the holidays (and I would miss less uni as a result). This never happened though, and the operation date ended up being in the middle of my second year of university. I really didn’t want to take time off, so I promptly said “thanks but no thanks” and asked to be taken off the waiting list until I’d graduated.  

So now... here I am. 

On the 31st October 2017, I’m going to wake up with a new body – and that’s the body I’m going to have for the rest of my life. I’ll have to learn to stand up and sit and walk again. I’ll never be able to bend or twist or move in the same way. 

I’m not going to lie – it’s pretty daunting. For the rest of my life, I’ll have two metal rods holding a part of my spine stiff. I’ll have to be careful with how I move, and with what I lift. My flexibility will be reduced. (Because of where my curve is, I actually have to be fused in the part of my spine with the most flexibility, which is a massive bummer.) 

It’s not that it’s all doom and gloom, though. For some people, this surgery is the best thing that has ever happened to them. I’ve heard of people who go on to absolutely thrive. Some say that they’re stronger, less limited, and in less pain; some say that they’re weaker, more limited, and in more pain. You never know. And I’ll admit, it’s scary not knowing. But this is (probably... hopefully) the best option for me in the long-run. 

***

I’ll definitely post an entire blog about the surgery at some point, and I expect that I might just generally be blogging more after the op – not necessarily about my scoliosis, but just as a way to kill time! (The recovery time is pretty long, so I’m probably going to end up incredibly bored!)

If you’ve actually read through to the end of this post, thank you! This is by far the longest blog I’ve ever posted. (Perhaps the next time I post, I’ll be partly made of metal!) 

Oh, and if you have any questions – no matter how personal – please don’t hesitate to message me! 

I hope you’re all well.

Love,

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