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.
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.
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!