Your Scoliosis Stories - Rachel's Story

Your Scoliosis Stories: Rachel’s Story

In the spirit of scoliosis awareness month, I have another amazing inspirational scoliosis story to share from one of my lovely readers 🙂

The latest story comes from Rachel, who shares her brave journey with scoliosis below. If you’d like to share your scoliosis story to be featured on this blog, please do get in touch!

Your Scoliosis Stories… Rachel’s Story

I think anyone with scoliosis will agree with me when I say that it’s unforgettable the minute you have a diagnosis. It’s like in a few small seconds, your world completely changes. I know that was the case with myself. Despite only being aged seven, I will never forget the minute I was diagnosed. I had some sort of virus and my Mum noticed that my ribs were sticking out on one side of my back, and took me to the local GP, whereby I was diagnosed with scoliosis, with an initial 58 degree curvature.

Following this, we were referred on to a specialist spinal consultant in Belfast. The options we were given weren’t particularly great. One was to wear a Boston body brace, and try to stop the curve progressing. Second option was to go down the spinal fusion route. However, due to my young age at the time and the severity of my curve, I would be receiving surgery on a six-month basis, to expand the rods. Neither option appealed to myself, nor my family.

However, when researching my condition, a family friend came across a specialist clinic in Suffolk, England, named Scoliosis SOS, which provided exercises aimed at reducing the curvature. The course was extremely intense – 6 hours of intensive physiotherapy every day, 5 days a week. Upon completion of the course, I had to complete such exercises at home for forty-five minutes every day. Around this time, I was also wearing a Boston brace, to try and stabilise my curvature. The exercises seemed to work as my curve came down to 48 degrees.

It was at Scoliosis SOS that we were put in touch with a company in Germany which makes custom-made braces. The staff were more than helpful and worked to suit me best, making me feel at ease. If something didn’t feel comfortable, all I had to do was say and they would quickly adjust it. As I progressed through puberty, I was back and forth to Germany for adjustments to existing braces and new body braces, when I had outgrown the current one.

For a while, it seemed like the exercises and body braces were working. Of course, the spinal fusion was always playing on my mind. We were warned that when I hit puberty and the growth spurt, the curvature would basically have a mind of its own and to expect it to go back up. Which it did.

I will never forget the day I was told that the spinal fusion procedure should seriously be considered, back in 2014. In the lead-up to the surgery, my curvature had risen to 82 degrees. What also sticks in my head was the pain I was in. The braces and exercises just weren’t helping me at that time, I was in constant agony. I couldn’t sleep at night, it hurt me to breathe, I couldn’t deal with the pain. In my mind, I knew that the spinal fusion procedure was the right thing to do. But something wouldn’t click. For years, I’d worked hard to avoid this. If I’m being completely honest, it felt like I’d lost my scoliosis battle, and that I was taking the easy option. What was harder to accept was that I felt like I’d let friends, family, physiotherapists, a lot of people down, and for that reason, I was too ashamed to tell people I’d made the decision to have spinal fusion surgery.

Your Scoliosis Stories Rachel Xray
Rachel’s scoliosis X-ray before surgery

For this reason, I fell into a dark patch. I felt like I had nobody to talk to, and I felt like nobody understood what I was going through. People didn’t know what it was like, nor did they realise the pain. Don’t get me wrong, people try to understand, but it’s not the same. I kept my feelings hidden, and ploughed on through. I was still in a lot of pain, but I kept going. When I think back on that time, I wish I did speak up and explain how much I was struggling. A few people have recently said to me that they admire how I dealt with everything over the years. But they don’t know what I’ve gone through, nor do they recognise the struggle it was to paint a smile on my face and tell everyone I was fine when I was in agony.

I was offered the opportunity to go to London to have my spinal fusion over there, but didn’t take the offer. It just seemed too far-fetched at the time – I was still in school and in the middle of completing my A Levels, I wanted to be as close to home as possible, among many other reasons. Several agonising months of pain followed and we were offered the opportunity to go to London again. It was now something I couldn’t turn down.

I remember meeting the surgeon and anaesthetist and it was only after that appointment that things started to feel real. This was going to happen. My life was going to change and I was going through with the spinal fusion. I honestly could not have asked for a better surgeon or anaesthetist – I will be forever indebted to the two of them.

I will also never forget being told the date of my spinal fusion. The hospital had rang my Mum and from memory, it was just over two weeks before. As much as I was dreading it, I was also excited. I had a lot to do, but strangely a part of me was looking forward to it as well.

What I also remember is the journey over. I was like a different person, I was acting like I didn’t have a care in the world. But I remember that when I got to the hospital and was going through details with a Nurse, that I broke down and said I wanted to get a flight home, also saying I’d made the wrong decision. Pre-surgery nerves more than anything!

I know a lot of people say they can’t sleep the night before their surgery, but strangely enough, I didn’t have a problem sleeping right through. One thing I hated was the 6 am wake-up call for breakfast, before fasting. I remember just waiting around, there’s not much you can do on the day. I was scared out of my mind, but when you are in the moment, you have to trust that everything will work out okay. My procedure was going to be in two stages: Stage 1 would be where they removed a rib to fuse the spine and I believe they did some metal work and then Stage 2 would be the main surgery.

I got the first procedure on a Saturday. All seemed well, I was eating fine on the Sunday. A part of me was thinking ‘why was I so worried about this?!’ But of course that faze passed. They worked close to several major organs during the surgery and they said that they had to see some movement in my bowel, which didn’t happen. They tried absolutely everything in the coming days, however it seemed like my bowel had gone into shut down. At one point, there was talk of me moving hospital, which thankfully didn’t happen in the end. My stomach swelled so badly that the Doctors and Nurses repeatedly asked if I was pregnant. On top of everything else, it wasn’t ideal.

One thing that particularly stands out in my mind was the chest drain. It was put in as a precautionary measure during the first procedure, as they work close to the lung area. They took the chest drain out on the Thursday, and I remember as soon as it came out, I didn’t feel right. The only way I can describe it is that I felt like something inside me had given up. I didn’t want to voice my concerns, as I thought this was just normal. But on the Friday afternoon, I will never forget waking up in the High Dependency Unit, and seeing my surgeon and anaesthetist by my bedside, letting me know I was going to have emergency surgery. My lung had collapsed, and I remember crying, but I wasn’t sure if it was tears of relief or tears because I was scared. I felt like I’d given up and at the time, as traumatic as it sounds, I felt like I was dying. I was drifting in and out of consciousness, I was on an oxygen mask, my stomach was still completely swollen as my bowel still wasn’t working, it was hideous. I remember coming round from the surgery and feeling much better.

This of course delayed the second part of the procedure. My bowel was still not working by the time it came to the second procedure, but they had to go ahead with it anyways. Almost as soon as I woke up from the second procedure, the Occupational Health Therapists had me up walking. Anyone who has gone through spinal fusion surgery will know that anything you do after surgery is like starting over again. Even tiny things like going to the toilet, walking, going up stairs, it’s all different and it does take time to adjust to it. The feeling of achievement when you complete the tiny things is indescribable. For example, whenever I walked up and down the Ward, I was wrecked after, but my Dad filmed it, and if I’m ever having a bad day, I watch that video, because it shows me just how far I’ve come.

Your Scoliosis Stories Rachel Xray after
Rachel’s Scoliosis X-Ray after surgery

I was in hospital for nearly a week longer than anticipated, a total of almost three weeks. When you’re there, it feels like an absolute lifetime, but everyone made me feel at ease and if there was any issue or I was uncomfortable, I spoke with a member of staff. Because my lung had collapsed, we weren’t allowed to fly back to Ireland. It involved a painful seven-hour drive (not ideal after surgery), a three-hour ferry and then another two-hour drive.

Recovery doesn’t just stop the minute you walk out of the hospital doors. To be honest, I didn’t think my recovery would end! I had to wear a body brace for six months post-surgery. The little things exhausted me whenever I got home. Even in hospital as well, I slept for most of the time. However, when thinking back to that time, you truly have to celebrate all your achievements. Whenever you dress yourself for the first time (regardless of how long it takes), if you walk further than you did the day before, if you can get yourself there and back to the toilet, sitting down yourself. There is so much you have to celebrate.

Taking a day off school when you are completing the second year of A Levels seems a crazy idea. However, I took nearly three months off. I’ll be extremely honest when I say that I didn’t want to go back, as I felt too overwhelmed. I was trying to complete work at home, but because I’d been off for so long, I was up to midnight most nights trying to catch up, do homework and revise for the upcoming exams. I have never thought about dropping out as much as I did back then. The fear of failure was a big thing for me and I didn’t want to do my exams, fail them all and have that hanging over me for the rest of my life. However, on the flip side, a part of me was more determined than ever. I had to try these exams and I didn’t want a ‘what if?’ hanging over me. If I failed, I failed. Somehow, I passed all my exams – achieving an A*, B and C.

People have asked me the date whereby I knew I was recovered. I don’t think there ever was a set date. It was a gradual process. I look back and think ‘I could do that in February and I couldn’t do it in January.’ Scoliosis and spinal fusion surgery is not an easy thing to go through, regardless of whatever age you are. A lot of people still don’t understand what scoliosis is and the impact it has.

In the past, I’ve likened scoliosis to missing somebody. The pain of missing them is extreme and it never goes away. But over time, it becomes more tolerable, and that’s exactly what scoliosis is like. It’s always going to be there, you have good and bad days. I still have my bad days, whereby I get stiff and pain. But the bad days are few and far between, and that’s what I wanted to get out of the process.

I was recently on Pinterest and saw an article which talked about how scoliosis shouldn’t stop you from achieving your dreams in life. At the time, you think you’re never going to get better, but you do. If anyone reads this and is worried that they won’t achieve their dream because of scoliosis, please do not think that. I’m still in a state of shock at my A Level results, after taking such a long period of time off school.

One thing I’ve pursued in the past few years is journalism. It has always been a passion of mine. In all honesty, it’s only been in the past year whereby I’ve taken it really seriously. I work extremely hard at it and the opportunities I have received make me feel like the luckiest girl. Whenever I’m doing interviews or attending events in conjunction with my journalism, I often think back to the time where I was lying in hospital. Life doesn’t stop because of your scoliosis or spinal fusion. It’s actually made me more determined to be a success.

That’s my scoliosis/spinal fusion story. To all the other scoliosis fighters out there, keep fighting. Do not let scoliosis hold you back from following your dreams in life. If you are preparing to go through spinal fusion, I don’t want to say don’t worry because a lot of people said that to me and it made me more anxious, but I can assure you that everything will work out okay. It may not seem like it at the time, but you will look back and realise that this process has made you a stronger, more resilient person, ready to face any challenge head on, ultimately changing you as a person. You’ll see who is truly there for you, lasting friendships will be forged, you will make memories that you will look back on with fondness, and more. I know that’s been the case for me anyways. I now have 2 rods, 2 hooks and 18 screws in my back, I have spinal fusion scars that I am extremely proud of.

Scars are truly something of beauty. I can definitely call myself a scoliosis fighter.

Thank you so much Rachel for sharing your story 🙂 If you would like to share your own scoliosis story to help raise awareness please do contact me!

Louise X

Top 5 UK Scoliosis Blog Feedspot

Top 5 UK Scoliosis Blog

Top 5 UK Scoliosis Blog

Just a quick post to say thank you to Feedspot for selecting my blog as one of the top 5 UK Scoliosis Blogs on the web.

I work so hard on this blog but with working full time, I don’t always have the chance to dedicate the time to it that it needs.

I have a lot ideas and awards like this make it all worthwhile and help to keep me motivated (as well as my readers of course!)

So, thanks again Feedspot!


UK Scoliosis Blogs

Scoliosis Awareness month

Scoliosis Awareness Month: Interview with Roslyn-Rachel

As June is scoliosis awareness month, I wanted to share some positive scoliosis stories, which will hopefully help to inspire you if you suffer with scoliosis or have had, are waiting for or recovering from scoliosis surgery.

I first “met” Roslyn Rachel via Instagram and I have to say, I find her such an inspiration to follow. She is a personal trainer and also runs I think she is an incredible role model for those of us with scoliosis, and personally has inspired me to be more confident and motivated to strengthen my back through exercise.

Below she talks about how her scoliosis has affected her life, the importance of fitness if you have scoliosis and her career as a personal trainer.

Firstly, I’d love to hear a little bit about you. When were you diagnosed with Scoliosis and what motivated you to start

I was diagnosed with scoliosis when I was 16, and then had the surgery when I was 18. That’s actually pretty old for a diagnosis; I’ve been told that lots of people have the surgery when they are between 14-16, but with me it went unnoticed for a long time. I had good posture from years and years of ballet lessons, so the usual tell-tale signs weren’t there! My mum noticed on holiday one year that one shoulder blade was more prominent than the other (a very common thing with scoli because of the rotation of the rib cage and the muscular imbalances). We went to the GP, who was very quick to say that there was absolutely nothing wrong with me. Later that same day the GP called our home and said that she’d been googling it and that maybe I should come back in for a follow up appointment after all!

FlexFit Dance is something that I started whilst doing my qualifications to become a personal trainer. I “got into” the fitness industry after graduating from my dance degree and wanted a way to combine my love for dance, fitness and writing all in one! I talk a lot about scoliosis and the impact that it has had on my training.


 How did scoliosis impact your day-to-day life prior to any treatment?

 To be honest, it didn’t. Like I say, it went unnoticed for a very long time, and because I was dancing so often, I managed to correct my posture pretty much unconsciously. The body has this amazing way of adapting to any structural issues…although this often results in lots of muscular imbalances!

After diagnosis, I was strongly advised to go ahead with the surgery because of the severity of my curves (I had S shaped scoliosis which meant I had two lateral curves in my spine – one at the top, one at the bottom). The surgeon said that it would probably get worse without intervention. Even though I didn’t experience any pain prior to treatment, after I found out about it I did suffer from a loss of confidence and lots of insecurities. I was an adolescent girl who was wearing a ballet leotard on a daily basis, and all I saw in the mirror was my wonky hips and shoulders. Body image is a huge thing for teenagers as it is, and this is amplified when something like scoliosis gets shoved in your face!


I can see you underwent scoliosis surgery to correct your scoliosis. How did you find recovery and are you happy with the results of your treatment?


Gosh. That’s a big and complicated question! The decision to undergo surgery was huge for me. My surgeon was exceptionally talented at his job, but bedside manner and patient communication was not his forte! Going in to the operation I had no real idea how this was going to affect my dancing or my mobility. That was a huge deal to me but not something that western medicine is really designed to take into account. I felt a bit like I was going into it blind, but it was a gut thing – I knew I’d regret not having the op.

Having said all that, the 14 hour operation was a huge success. The curves in my spine were corrected by over 90%. It is now pretty much “straight”.

Scoliosis Awareness Month - Roslyn Rachel Scoliosis Xray
Roslyn-Rachel’s Xray

Recovery didn’t take too long. The first few days are a bit of a blur from pain medication but everything improved rapidly once I started standing and walking about again. I took my first step three days after the was tough and I felt super heavy from all that metal that is now holding my vertebrae in place!

I remember being really affected by the cold. I’d go out for a walk with my mum every day after I returned home from hospital. Not far – just down the road or to the nearby shops – but it was November and the cold weather made all my muscles seize up in a way I’d never felt before. I felt so slow at first but I suppose I got a little more confident with each step. I was back to daily life after a couple of months and even went back to my dance classes after about three to four months.


How does scoliosis affect your life now, post surgery?

 It doesn’t dramatically affect my life at all, if I’m honest. I’m very glad I had the surgery.

Naturally are some minor things that I cannot do in terms of my spinal mobility. When you have scoliosis surgery, your vertebrae become fused wherever they attach to the Harrington (titanium) rods. This will differ depending on the severity of the Scoli. I’m fused from my second thoracic vertebra (T2) to my third lumbar vertebra (L3). Which is quite a lot! As the majority of my vertebrae don’t have the normal gliding motion that they should, I can’t flex, laterally flex or hyperextend my spine. No ab crunches for me at the gym! There are lots of little things like that that I notice, but there’s always a solution to any problem and nothing is life-changing.


I can see you work as a Personal Trainer. Many people facing the prospect of spinal fusion surgery may think they’d never be able to become a PT or get into fitness. Could you shed a little light on how you managed to get into exercise post surgery?

 I actually think that getting into fitness is one of the best, most important things that you can do after having surgery of any sort. If you really get into the fitness industry, learn from reliable resources and meet knowledgeable people, it helps you to get a proper understanding of your body. Which in turn helps you to learn about your strengths, your weaknesses, what you need to work on and how – in so much more than a “I want to get fit and have abs” kind of way.

Scoliosis Awareness Month - Roslyn Rachel_mini

I wasn’t actually offered any physio or personal training at all after my operation. The NHS just can’t afford that sort of thing! For a few years I just got by on what I knew from my years of dancing. Then after I graduated I met my (now long term partner!) who was a PT at my gym. He taught me so much about how the body works in a way that doctors’ cant. I found it so interesting that I decided to get into it myself and a year later I was a qualified PT!


Many people are scared to exercise post surgery. Have you got any fitness tips for people who have had scoliosis surgery?

 Take your time, but also don’t be afraid. You won’t jump into it right away. Like I mentioned – for the first month or so, I was struggling to walk one hundred metres down the road. It’s taken me years and years to build up the strength that I have now, but I’m so proud of it I can’t even describe.

Regardless of your specific fitness goals, people with scoliosis often have lots of little muscle imbalances – even after having the surgery. When you’re fully recovered and functioning, it’s definitely worth spending some time to strengthen the smaller, stabiliser muscles in the back, around the shoulder girdle, and in the pelvis. Learn to activate your deeper core muscles so that you have a nice, stable foundation and take some time to check in with your body and make sure everything is in alignment.

Realistically, having scoliosis, or having the surgery for scoliosis, shouldn’t hold you back at all in the long run, and going through that process will actually make you mentally stronger too.


Finally, what advice would you give someone suffering from scoliosis at the moment?

You’re not alone. Not in a smushy, cheesy, way. I mean seriously. You’re not alone. So many people have scoliosis. I currently do some work in a physiotherapy clinic and so many of the patients there present with scoliosis. In fact, since my own surgery, everywhere I have gone in my life, university, college, different countries that I’ve lived in, I’ve always met at least two people with a very similar story to my own. When I go anywhere I automatically look out for either the curve in the spine or that tell-tale scar at the base of the neck! When you start looking for it, you realise how common it actually is.

Which in turn means that there are so many people to talk to about it. I’m always happy to talk to anyone who is going through what I went through because when I was facing my own surgery, I felt so alone. I felt like the only person in the world who’d ever had to go through that diagnosis and that surgery.

If you don’t want to have the surgery, I’d strongly advise finding a good physiotherapist or even a highly qualified personal trainer. Get to know how your body works and no matter what happens, it won’t let you down.


To find out more about Roslyn-Rachel, you can follow her on Instagram or check out her website –

If you’d like to share your story on my blog and help to raise awareness of scoliosis please feel free to contact me!

Louise X

Half marathon

My first half marathon: Great Manchester Run

A couple of weeks ago (Sunday 20th May), I took part in a massive personal challenge – my first half marathon (The Great Manchester Run). I wanted to share this on my blog just to show that with hard work, anything is possible.

My first half marathon – training

I love to push myself and completing a half marathon was one of my goals for this year. So back in January, I signed up to the Manchester half marathon, which gave me 5 months to train. I’m the sort of person that when I set a goal, nothing stops me from achieving it. So I downloaded a half marathon training app (I used Asics, thought it was really good) and started my training. To be honest, I was already doing quite a lot of running anyway. In January I joined a run club, so I was running a couple of times a week with them and doing quite a few 10k races and Park Run to keep my fitness up. Over the next few months I was running several times a week, as well as mixing in some strength training and classes at the gym.

When it got towards April, I started trying to build the distance up a bit. I’m fine with running 6-7 miles but I’m not really used to doing any further than this. Hence why this half marathon was such a challenge for me. Over the couple of months leading up the race I used my Sunday’s as a practice for longer runs. I started with 8 miles and built up to a 10 mile run a few weeks before the race. To be honest, I really, really struggled with the 10 mile run I did in training. I felt ok in terms of my fitness, but it was my legs. They just hurt so much and I struggled to physically keep running. I now know that this was due to me not fuelling properly during the run or taking any water with me (schoolgirl error!). I’m not used to long runs so I didn’t realise I’d need some sweets or energy gels during the run.

The longer training runs knocked my confidence a bit. I had to slow right down to keep going for 10 miles and I really struggled. I also ran out of time leading up to the race so only managed to do one 10 mile run before race day – I would have liked to fit a few more in to be honest or get a bit closer to the half marathon distance. Basically, I did not feel ready for it! But I read somewhere that if you can run 8 miles, you should be able to safely complete a half marathon. So this reassured me a bit.

My first half marathon – preparing for race day

The days before the race I tried to prepare as best I could. It was going to be a hot day (typical!) for the race, so I made sure I drank lots of water in the days leading up to it and avoided alcohol. I also made sure I ate as much as I could, especially carbs like pasta.  I also toned down the running and exercise about 4 days before so that I wouldn’t be tired and have sore legs on the day of the race. The night before, I got all my kit ready and packed my back pack that I was taking. I made sure I took plenty of water, some sweets (jelly babies and Haribo) to have while I was running, some spare clothes, suncream as it was a hot day and some post race snacks. I then got an early night as I had to get up at about 5am for the journey to Manchester! But could I sleep? No way!

On the morning of the race I kept hydrated on the journey to Manchester. I was so nervous I felt sick. I have done plenty of 10k races before but I was worrying that I wouldn’t be able to finish the 13.1 mile distance, as it’s something I’d never done. I was also worrying about when to eat my sweets during the run to keep my energy up, and about how hot it was as I’m not used to running in the heat.

Luckily we arrived in Manchester with plenty of time to spare and I had time to go to the toilet (twice) as I had drank so much water! I have taken part in this event before – last year I did the 10k – and I just love it. It’s so well organised and the atmosphere is amazing. So as soon as I saw all the crowds and headed to the start area I started to feel more excited than nervous and like I could actually, maybe, do this.

During the race…

My strategy for this race was just to complete it, without stopping. I didn’t care what time I got. I just wanted to complete it, as it was my first one, to prove I could do it.  As I normally run around 9 – 9.30 min miles during races, I thought I’d be best going slower (for me) and aiming for 10 minute miles, which is what I did during training. The last thing I wanted to do was start off too fast and then burn out. I also decided I would have some sweets after about 40 minutes of running and then after about 60 minutes and so on, to avoid what happened in my training where I felt like I couldn’t physically go on after 10 miles. I had worked out that I would probably finish in around 2hr 20 mins if I went steady and this factored in possibly having to stop and/or walk a bit.

I started steady and luckily, as I was in the group that were expected to finish in over 2 hours, everyone was running at a similar, steady pace to me. This helped as I felt I was in the right group and  it meant I didn’t get caught up trying to run too fast.

My first half marathon 2

In all honesty, because I was running slower than I usually would for a shorter race – I found it quite enjoyable mostly. I just took it steady, had my sweets for energy and took all the water that was offered. It was very hot though with limited shade and I found that side of it pretty tough. I kept going and felt fine until I got to mile 10 – yep, the milestone! After mile 10 I really started to struggle, my legs hurt so much and it was a struggle to keep going. I didn’t stop though and pushed through the pain.

By mile 11/12 so many people had started to walk and some had actually collapsed at the side of the road and were receiving medical attention, which shows just how tough going it is really. I carried on pushing through the pain and when I got to mile 12 and realised I only had 1 mile left, I think adrenaline or something must have taken over! My legs were still hurting but I started to speed up again and did the final mile almost a minute quicker than the previous 2. As soon as I saw the finish line I went for it – I really don’t know how I had the energy but I just sprinted as fast as I could towards the finish line! Once over it though I could hardly walk and sort of hobbled towards where they were handing out the medals and finishers packs.

After the race…

As I was hobbling towards the meeting point I checked my watch and I just couldn’t quite believe it. I’d completed the half marathon in 2 hours 8 minutes, which I was over the moon at. I had been expecting about 2 hours 20 minutes as I thought I’d have to walk at some point. If I had been able to hold my pace between miles 10-12 then I would have probably finished around 2 hours 5 minutes. Plus if it was cooler maybe even quicker. I’m so pleased with myself it’s unbelievable. I still cannot believe that I’ve been able to train and run a half marathon, after having scoliosis surgery. It took me about a week to recover from it – my legs hurt pretty bad for at least 4 days  – but I’m so proud of myself. In fact, I have even signed up to another one at the end of the year 🙂

My first half marathon