my atypical scoliosis diagnosis

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Telling the whole story of my time with scoliosis is a long one, so I thought I should publish the story of my diagnosis because it was a less common way of discovering scoliosis, so maybe someone will read this and get the treatment they need sooner rather than later.

Scoliosis needs more awareness, it affects 2-3% of the US population (couldn’t find the figures for the UK) which is actually a large number, most of which are teenagers. I’ve also added some symptoms of scoliosis. Only 10% of scoliosis patients require spinal surgery, so if you think you or someone you know may be affected by this disease, please see a doctor; a simple x-ray gives you your diagnosis. Most cases are a wait and watch approach, with regular monitoring to see that the curve hasn’t increased too much, or at an abnormal rate. Only 30% of patients are required to wear a brace, which is custom made from plastic and designed to be discreet so it can be hidden under most clothing. 

If my scoliosis had been diagnosed earlier, perhaps I would have just had bracing and never required a life-changing major surgery. 

In October 2009 when I was nine years old I got a chest infection, which wasn’t too unusual because I had asthma. I genuinely sounded like a dog, then I got a lower lung infection, and more infections and I coughed like a dog right up until March. 

This carried on for six years. It was like clockwork, every October I would get a chest infection then cough pretty much straight through until March. It wasn’t even a normal cough either, it was a constant bark and it was debilitating, my ribs were sore from coughing, I was so tired from not sleeping and was just generally so unwell for six months every year. 

I saw doctors upon doctors, specialists upon specialists, had loads of steroid courses, loads of inhalers, was in hospital and put on a nebuliser many times and still no one could figure out what was wrong with me or more importantly how to stop it.

I had an asthma check up in January 2016 and the nurse asked if I’d ever had a chest X-ray, when I told her that I hadn’t she told me to ask for one. So I mentioned it to the doctor and he booked it in. I got the x-ray then two days later got a phone call asking me to make an appointment as soon as possible to see my doctor about my X-ray results.

I was terrified to say the least. So many things were going through my head about what could be wrong, and to make it worse I couldn’t get an appointment until a week after that phone call.

After a week of intense anxiety I went to the doctor and he told me I had scoliosis, and I said “what’s that?” Which I think really shows the lack of awareness we have of this common condition. I was told I’d been urgently referred to see the orthopaedic surgeon at my local hospital. 

I went to see this surgeon at ARI shortly after who explained my condition a bit more to me and finally showed me my x-ray. I was shocked. My spine was shaped like a C. He explained a lot of the symptoms and how these were probably things that I had just passed off before but that now I would realise were because of scoliosis. He said that he was sure I wouldn’t need surgery but was going to refer me to the surgeon in Edinburgh to make sure.

After this appointment I started doing a lot of googling about the symptoms of scoliosis and comparing them with my own body. I wondered how I had never realised something was wrong. I always had bad neck pain but I blamed this on long bus journeys, I didn’t think it would be because my neck was physically tilted foward. I was always very self conscious of my prominent rib cage but I put it down to my body shape and thought I was just weirdly shaped. I always walked weirdly, but I just thought it was because I had issues with my feet when I was younger, not because my body was tilted to one side. I hadn’t even noticed how much my shoulder blades stuck out but when I saw it I couldn’t understand how I had never noticed before.

I saw the surgeon in April 2016 and got full x-rays done. Here’s where comes the problem. My chest X-ray did not show my entire spine, whereas these spinal ones did. This was when the surgeon realised I had a “compensatory curve” and my spine was actually S shaped rather than C shaped. This was not good news. He said that my upper curve had caused the lower curve as a sort of balancing act, I guess my spine was trying to help me out but it did the opposite.

He explained to me that I would need major surgery on my spine at some point in my life. He said that if I waited then the lower curve could get worse and cause a lot of mobility issues, and that my back and neck pains would just get worse. 

He said it was up to my mum since I was under sixteen but she did not want to make the decision for me. I asked the surgeon what I should do and he said “if you were my daughter I’d be doing the surgery”, and that was the deciding statement for me.

So I went ahead, my spinal fusion was scheduled for June 27th 2016.

I was terrified in the months leading up. The fear of being paralysed, even dying on the table, my curve having gotten too bad in those two months up to the surgery, the recovery. 

Despite the intense fear of the operation, I went ahead and then spent ten days at the children’s hospital in Edinburgh. It was strange being praised for managing to sit up, walk a couple of steps and even eat. 

The surgeon showed me my x-rays and pointed out to me that my lung capacity had been reduced by 50% because my spine had been crushing it. They thought that I also had some sort of winter allergy which originally caused the cough but then because of the capacity of my lung I just couldn’t get clear of it until winter was over. 

It was when I got through a whole winter period without constant chest infections that I realised I had definitely made the right decision to go ahead with the surgery. 

All in all, I do not regret getting a spinal fusion. It really has changed my life and there were a few times I regretted it during my recovery. But now I can recognise that I can actually have a life in winter without coughing the entire time, my back may still be sore and deformed but nothing compared to what could have happened if I had not went forward with surgery. Also, it makes me feel pretty unique, it’s a reminder of how brave I have been over the last few years and how much I have overcome. 

Symptoms of scoliosis include;

• A visibly curved spine
• Body leaning to one side
• Uneven shoulders (eg.one higher than the other)
• One shoulder blade or hip sticking out
• Ribcage sticking out on one side 
• Clothes not fitting properly

I have included a link to my STV news story about my diagnosis and the innovative new jackets available at Edinburgh Hospital Post-Op.

https://stv.tv/news/features/1382168-scoliosis-teenager-s-new-lease-of-life-after-shock-diagnosis/

I am adding the link to the pluma Italia bangle shown in the photo gallery for easy access, This bracelet was created by Pluma Italia to raise awareness of scoliosis, designed with Victoria’s Secret Supermodel Martha Hunt who also had a spinal fusion. All proceeds are donated to the Curvy Girls Scoliosis Foundation. The bangle is made of titnaium, like the rods in our spines and is engraved with the world resillient, which inspired my tattoo. They retail for $29 and are available at :

https://www.google.com/search?client=safari&rls=en&q=leah+bracelet+pluma+italia&ie=UTF-8&oe=UTF-8