Back the Back Walk Scoliosis

Interview with Freya – founder of Back the Back Walk for Scoliosis

Hi Freya! Tell me a bit about yourself and your scoliosis history, how old were you when you first diagnosed and how did you feel at the time?

Hi Louise! I am the founder and organiser of Back the Back Walk. I’m from Buckinghamshire, I have just turned 20, I finished school two years ago, and I am going to Durham University this September to study Music, first study voice.

I was diagnosed with Adolescent Idiopathic Scoliosis when I was 11 years old – my mum first noticed that one of my shoulder blades stuck out more than the other when I was swimming, and I had x-rays done just a couple of months later. My curve was in the lumber region, but I had a compensatory curve at the top, which was misaligning my ribcage. I had surgery less than 6 months later, and the curve had already progressed by about 15 degrees and was beginning to rotate as well. Before the surgery, I was very lucky and didn’t really have any pain unless I sat in one position for a long time – more than anything, I felt frustrated by the fact that I couldn’t get on with school and life in general as it wasn’t obviously impacting me at the time, and hated the fact that everyone was making such a fuss!

Back the Back Walk Scoliosis Freya
Back the Back Walk Scoliosis Freya

I can see you underwent scoliosis surgery to correct your scoliosis. How old were you and what impacted your decision to undergo surgery?

I had my surgery when I was 11, and was basically told that I didn’t have a choice – the curve was already past the point of being corrected by bracing, and if I didn’t have the surgery it would continue to progress. The only other options I had were to wear a brace for a few years and then have the surgery, or to basically wear a brace for the rest of my life. As I was already tall and still growing, I think they were concerned that it would get worse quite quickly.

How did you find recovery and are you happy with the results of your treatment?

That is a very difficult question to answer, as the recovery process was quite a long one. I had to wear the brace for 6 months after the surgery, 23 hours a day. During this time I couldn’t do any sports or exercise except for walking, and it was probably another 6 months to a year after taking the brace off until I was back to full strength. I found it was more about pacing myself and learning my new limitations, both throughout a day so as not to exhaust myself and through the 6 months.

For me, the worst part of my recovery was the first 8 days after my surgery when I was in hospital. Not only did I have to adjust to walking and sitting in a new position due to the new alignment of my spine, but the two worst parts of the entire procedure and recovery in my opinion were here: removing the chest drain, and adjusting to the back brace. The chest drain was inserted to remove the fluid from my left lung, as it was deflated and then re-inflated during the surgery and was there for maybe the first three days I was in hospital.

It was very uncomfortable being removed, but it was over quickly! The back brace, however, took a little more adjusting to – I found the first couple of nights I was wearing it actually quite painful and I couldn’t find a position that was comfortable, but once I was home, I got used to it fairly rapidly and after about 10 days, it had become like a second skin. The staff at Stanmore were absolutely amazing and I cannot thank them enough.

About 6 weeks after my operation, I started part-time attendance at school, gradually working my way up to full-time over 2 months. My school were absolutely fantastic and so supportive during my recovery, allowing me to leave lessons a few minutes early to avoid the crowded corridors, providing me with somewhere to lie down if needed, and giving me full permission to steal the teacher’s ‘comfy’ chair (very satisfying!) in each lesson as they were higher than the standard classroom chairs, which I needed to maintain a 90 degree angle at the hip when I sat down.

I also still can’t believe how accepting and thoughtful my classmates were at the time – I was never short of volunteers to carry my bag, and I remember feeling disappointed that I had missed the class Secret Santa draw, before getting a whole bag of presents that everyone had contributed to on the last day of term!

I don’t want to underplay it, because it was a difficult time that took a lot of strength, determination and codeine, however I am super happy with the results of my treatment – it was definitely the right decision to have the operation at that time, and anything negative in the procedure or recovery process is completely outweighed by the positives of the outcome.

How does scoliosis affect your life now, post surgery?

Scoliosis doesn’t impact my daily life.

I rarely have to think about my surgery, and only have to take a few precautions: my restrictions are that I can’t lift more than 10kg, and I can’t trampoline, ski, bungee jump or sky dive – the last two aren’t exactly at the top of my list!

I have found that my hip flexibility has been slightly reduced, meaning I have to find some ‘alternative’ dance moves which always causes amusement amongst friends, but it doesn’t stop me from doing anything I want (exhibit A : the walk)! It doesn’t bother me, as I know it would be much more reduced had I not had the surgery. The only thing that I find irritating is that one of my feet is warmer than the other as a result of severed nerves, so my right shoe always wears away faster inside. Particularly annoying on flip flops!

Although I was upset about them to begin with, I am now incredibly proud of my scars. I started off trying to cover them up and felt quite self-conscious about them, but got to a point a few years ago where I didn’t care anymore and started wearing bikinis or shorter tops that showed them off. They have become a part of my body that I don’t want to get rid of or change, and some of the reason I want to raise awareness of the condition is that I want people living with Scoliosis to have confidence in their appearance too.

Tell me a bit about the Back the Back Walk, how did you come up with the idea and what motivated you to organise the event?

I love being outdoors, and I was planning on doing a long walk in my break between school and university this year. I was thinking of doing it for charity and being sponsored, but wasn’t really sure who to do it in aid of, or where to go. The event kind of started as a joke, as I was looking at National Trails in England and Scotland and remembered that the Pennines were often referred to as the ‘Backbone of Britain’, and thought I could walk for a Scoliosis Charity (can’t resist a pun!). It was only after I mentioned it to a few people and got a really positive response about the idea that I decided to go for it! Only one of the longest (268 miles) and most challenging of the National Trails!!

I set up Back the Back Walk for several reasons. On a personal level, it is a way of me thanking all the people who helped me, both in and out of hospital, on my road to recovery. There is, however, a much bigger purpose for the walk: this is a chance to help others going through treatment, not only by raising funds for the Royal National Orthopaedic Hospital Charity and Scoliosis Campaign Fund (Scoliosis Association UK and British Scoliosis Research Foundation combined), but hopefully by inspiring them – I am proof that the surgery works and that Scoliosis doesn’t have to have an impact on your life. The main goal for the walk, however, is to raise awareness of Scoliosis, and to get people talking about it.

What are you most looking forward to about the event?

Initially, I was looking forward to the walk itself, but having spoken to people like you who want to get involved or support the event, I can’t wait to meet everyone along the route!! I cannot believe how much of a positive response I have had, both online and in person – thank you so much to everyone who has sponsored or signed up, and for everyone who has contacted me to show their support!

Also, a huge thank you to Diggle House Farm, Hebden Bridge Hostel, The Tan Hill Inn, The Cheviot Hotel, Clennell Hall Country House, The Teesdale Hotel and St Marylebone Parish Church for their support of the event!

Have you taken part in any other challenging events like this since your surgery? If so, what were they?

I have completed both my Bronze and Gold Duke of Edinburgh Award, but have never attempted anything on this scale before! I think my most impressive achievement however, although not changeling in the same way, was probably winning the 100m A team race at school just 8 months after my operation.

Tell me a bit about how you have been / will be training and preparing for this event?

Walking; lots of it! As well as going for long walks both with and without bags on my days off, I have been trying to fit as much additional walking in to my daily life as possible. I even stopped insuring myself on the car so I would have to walk to work or the town centre near me! I have also been doing a fair amount of yoga and other core strengthening exercises as I will be carrying a relatively heavy bag.

Finally, how can others get involved, sponsor you or follow your progress?

The best thing to do if you want to get involved in any way is to head over the website www.backthebackwalk.org – all the information you will need is there!

The walk, beginning on International Scoliosis Awareness Day 30th June, is open for anyone to join. Whether it is for an hour, a day, a week or the entire 19 days, everyone is welcome! If, however, you can’t make the walk for whatever reason, there is also going to be a launch concert at 6pm on Saturday 22nd June in St Marylebone Parish Church, London (tickets available on above website). To keep up with the event, go and give the Back the Back Walk Facebook Page a like!

If anyone has any further questions, please feel free to drop me an email on backtheback.info@gmail.org.


I’ll be taking part in the Back the Back Walk on Scoliosis Awareness Day and I can’t wait! I’ll be sure to keep you updated on my blog and Instagram page.

Top 10 Inspiring Scoliosis Instagram Accounts to follow

Inspiring Scoliosis Instagram Accounts: My Top 10

Inspired by my own Instagram obsession, I thought I’d list my top Scoliosis Instagram Accounts to follow. 

I must admit, I am a little addicted to Instagram at the moment! Apart from Pinterest, Instagram is the main social platform that I use to try and raise awareness of this blog and scoliosis in general (shameless plug – you can follow me on Instagram here!)

The thing about Instagram is, it can be incredibly inspiring IF you follow the right accounts. I made it my mission late last year to unfollow any account that doesn’t inspire me, motivate me, or make me feel good about myself. 

I find Instagram is a great platform if you have a certain interest/niche – I love it as it’s great for connecting with other runners and those with scoliosis. I feel like over time I have built up a little community of friendship and support on there which is lovely and can be very motivating!

Below are 10 scoliosis related Instagram accounts that I enjoy following and am inspired by (in no particular order).

I’m sure I have missed some so please feel free to share any accounts that you are inspired by in the comments below 🙂


Inspiring Scoliosis Instagram Accounts to follow: My Top 10

1. Eva Butterly @evabutterly

Inspiring Scoliosis Instagram Accounts to follow - Eva Butterly

Eva is a PT and Online Coach for Scoliosis. She has created a range of podcasts discussing scoliosis and offering practical tips and advice for those of us with the condition. On her Instagram she shares strengthening exercises and inspirational images of her scoliosis. I personally find Eva incredibly inspirational to follow!

Check out her scoliosis podcasts here.


2. Mabel and the Scoliosis Runner @mabel_and_the_scoliosis_runner

Inspiring Instagram Accounts to follow - Mabel and the Scoliosis Runner

James is a runner who has not let his scoliosis stop him. I find him inspiring to follow due to my own interest in running and it just proves that even with scoliosis, you can run marathons! (My ultimate goal one day!) James has ran in the London Marathon which is my dream, and on his Instagram he shares his training and race achievements.


3. Hayley Wakefield @hayleyelysefit

Inspiring Instagram Accounts to follow - Hayley

I have only recently come across Hayley’s Instagram account but I find it incredibly inspiring! Hayley is a PT who has scoliosis and shares strengthening exercises and videos on her Instagram, she also has a scoliosis e-book.

I really want to work on my upper body strength to help with my scoliosis and my running. Sometimes I don’t know where to start though, especially with having scoliosis, so I love coming across accounts like this – it really motivates me to get going!


4. Curvy Girls Scoliosis @cgscoliosis

Inspiring Instagram Accounts to follow - CG Scoliosis

Curvy Girls Scoliosis is a peer run international scoliosis support group ran by young girls and aimed at young girls, covering 19 countries. 

Visit the Curvy Girls Scoliosis website for more details. 


5. Paige Fraser @lovingthispaige

Inspiring Instagram Accounts to follow - Paige Fraser

Paige is a model, professional dancer and choreographer who does not let her scoliosis hold her back. Check out an interview with Paige on the Beyond Scoliosis website – very inspiring!


6. Martha Hunt @marthahunt

Inspiring Instagram Accounts to follow - Martha Hunt

Martha Hunt is an American model, she has scoliosis and is proud to represent those affected by the condition. She uses her Instagram to raise awareness of scoliosis by proudly showing off her back and beautiful scoliosis scar to her 3M followers. 


7. Shano Nebel Rasmussen – @fuck_scoliosis

Inspiring Instagram Accounts to follow

Shano has severe scoliosis but does not let this stop him from bodybuilding. He shares bodybuilding and work out videos and photos on his Instagram and his posts are very positive and motivational.


8. Bent not Broken-  @Bent.not.broken7

Inspiring Instagram Accounts to follow - Bent not Broken

Bent not Broken is an Instagram account run by Rosie, who has had scoliosis surgery herself. It is a very inspiring account, dedicated to raising awareness of scoliosis.

On her Instagram page, Rosie shares beautiful and inspiring scoliosis stories, as well as some amazing back and scar photographs.


9. Scoliyogagirl – @scoliyogagirl

Inspiring Instagram Accounts to follow - Scoliyogagirl

Based in Prague, Czech Republic, Veronika shares back care and yoga tips for scoliosis on her Instagram, as well as raising scoliosis awareness.

Yoga is something that I have recently taken up and it’s so good for those of us with scoliosis – I really need to make an effort to do it more often!


10. Anna Martin @annamartinfitness

Inspiring Instagram Accounts to follow - Anna Martin Fitness

Anna is a PT and fitness entrepreneur sharing her top fitness tips for training with scoliosis regularly on her Instagram. I love her page and find it very motivational, as sometimes I struggle to know where to start/what exercises to do when it comes to weights and strength based training. 

 


Are there any I’ve missed?

Share your own favourite inspirational scoliosis Instagram accounts in the comments below 🙂

Pin it!

Top 10 Inspiring Scoliosis Instagram Accounts to follow

Photo by Tofros.com from Pexels

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 FlexFitDance.com. 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 FlexFitDance.com?

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 operation..it 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
Roslyn-Rachel

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 – FlexFitDance.com.

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

Another Amazing Scoliosis Surgery Story

I came across another amazing scoliosis surgery story on Twitter over the weekend about a girl with pre surgery scoliosis of 180 degrees, click here to have a read.

Truly inspirational!

Amazing Scoliosis Story

So I was browsing Twitter the other day and came across such an inspirational scoliosis story. Take a look at the video below, the kid got such a wonderful correction: