Living with Scoliosis

Sonia Styling: What is Scoliosis?

At the age of 10, I was sitting poolside at school when out of the blue, the PE teacher called me over.

She asked me to touch her toes and ran her finger along the length of my spine – except she didn’t follow a straight line. Instead, she drew the shape of an S.

Concerned, she called for the school nurse and it was in that instant I knew something wasn’t right.

I was soon diagnosed with Scoliosis and a 58 degree curvature of the spine.

My surgeon at the time said it was the largest curvature he had seen in someone so young and since I was in the thick of adolescence and still growing, he had no choice but to put me into a back brace.

I wore the plastic equivalent of a corset for 5.5 years for 23 hours a day, which by the time I had stopped growing had only reduced my curvature to 45 degrees.

I was 15 years old and staring down the barrel of spinal surgery.

After a 2.5 hour operation, my thoracic spine was fused with 8 titanium rods and 16 screws, and I spent the next 8 days in hospital learning how to roll over in bed, sit up, stand up, walk and pick things up off the floor.

Fast forward some 15 years later and I’ve still got Scoliosis. You see, there’s no cure for it – only treatment – and there are many post-surgery side effects that remain.

A lot of people to look at me would never know there’s anything “wrong” with me.

At first, they can’t see that I have one leg slightly longer than the other or that my hips are a bit out of whack or that one side of my rib cage is more prominent than the other.

And those that know me well and are familiar with my medical history often forget what I’ve been through or that it still affects me to this day.

You might have noticed earlier this week that I said my neck was playing up.

The funny thing is, I don’t suffer any pain or discomfort in the part of my spine where I have my rods and screws; it’s actually the other parts – the “free” parts – that cause me problems.

I carry most of my tension in my neck and shoulders, so the slightest wrong move, crappy night’s sleep or aggravation will see them flare up and have me making a desperate phone call to my physio.

I also get lower back pain from time to time, and have an inflammation/over use injury in my longer leg – my left leg – right up in the spot where my hamstring meets my glute (the most awkward spot ever, truth be told).

While I don’t intend for this post to be a “oh woe is me, haven’t I got it tough” type of story – because I certainly don’t – I just want the knowledge to be out there, as Scoliosis is so common and it can range from mild to severe.

If you want to learn more about Scoliosis, please check out the Scoliosis Australia website.

Do you or does someone you know have Scoliosis?

Do you have any questions about Scoliosis that you’d like to ask me?

PS: Find Me Here! Facebook | Twitter | Instagram | Pinterest

Comments

  1. tiana says

    I too have scoliosis – and it’s just something we learn to live with 🙁 However, and this may be a silly question, do you see a chiropractor? My curvature is caused because my head is slightly too forward, and the rest of my body is desperately trying to compensate (and it’s painful). While my curvature isn’t enough to warrant surgery – the chiro can do wonders for alleviating day to day pain. He actually helped me regain some of my neck curvature to get my head to sit a little farther back. You’re dead on – there’s no cure. I really appreciate your article, and wish you more pain-free days than painful 🙂

    • Sonia says

      I’ve always seen a physio, which seems to work well for me. I think it’s important to have regular treatment that suits you, to stretch daily and also find exercise that works for you. Thanks so much for leaving this comment, Tiana – and for your kind words. I wish you plenty of pain-free days, too!

      • Guest says

        I am willing to bet that your short leg caused your scoliosis.

        Not sure why the doctor didn’t catch that, but from what I understand some doctors see that a being caused by the scoliosis.

        Had the doctor fixed the short e.g. issue I am willing to bet your scoliosis would have taken care of itself.

  2. says

    I was diagnosed at 12 during a check for all students at school and a note was posted to Mum telling her to “watch” it. No indication of the possible severity or anything for my future self so it was filed away with the paperwork and Mum not giving it a second thought. Fast forward to 2 years later when at 14 I was wearing a striped top and waking in front of Mum when she noticed the stripes weren’t running in a straight line. I went to the specialist after this and was told I had a 30 degree curve and as I had stopped growing (yay 160cm for life) there was little they could do. The curve, not severe enough to require surgery, would have been purely a “cosmetic” procedure as the specialist put it so I opted for no treatment. Now at 33 it doesn’t give me too much grief but I do experience the odd ache or pain but mostly tightness in my muscles at times. To this day Mum feels extremely guilty of not paying the attention that should of been paid to that initial note.

    • Sonia says

      Wow, what a story! Your poor Mum, the guilt she must harbor. I’m glad to hear you’re doing well all these years later. Thanks so much for sharing your story.

  3. merilyn says

    you have been through a lot haven’t you sonia! … brave little tyke!
    mr m has it … not that bad, but there is a noticeable s shape! … it has caused back pain from time to time!
    he has had physio and chiropractic treatments over the years! but hasn’t needed surgery though!
    I can definitely empathize with you and it’s helpful to make people aware of these problems!
    sitting at a computer probably wouldn’t help either?!?
    lots of love sweet thing! m:)X … hope you are not in pain today!

    • Sonia says

      Sitting at a desk all day definitely doesn’t help, so I’m forever getting up to stretch or get a glass of water. My colleagues are used to it now!

  4. Lisa mckenzie says

    I too have scoliosis Sonia and it has affected my neck and I also have knee problems I’ve had 5 ops on my knee and a complicated knee replacement 4 years ago and a I will be having a cervical spinal fusion this year because of nerve inpingment,look after yourself hon and keep as supple as you can,big hugs from me Xx

  5. says

    I used to work as a Chiropractic Assistant so have seen a few people with scoliosis. It’s particularly hard with children, and I can’t imagine what wearing a brace for so long during your teens was like.
    Surgery is the only answer for some, but as you say, it’s only a treatment, there is no cure.
    Does chiropractic help with your pain issues?
    I injured my back bout 15 years ago in a water skiing accident. The pain and lack of movement is some days hard to manage, although I’ve found a combo of chiro and clinical pilates really does help.
    We all have our trials and tribulations, ho hum…. xx

    • Sonia says

      I find regular physio, stretching and exercise all helps. I also have to be mindful not to overdo it (which I’m prone to doing from time to time…oops). We certainly do all have our trials! x

  6. says

    I have mild scoliosis in my lower back, no curvature at all in my neck (where there is supposed to be a slight curve), and the parts of my spine that should be straight are curved and the parts that should be curved are straight so I’ve had neck and back problems my whole life. Some of my muscles in my back also didn’t develop properly because of it. I see an Osteopath every month now which helps immensely but it will be something I do at least monthly for the rest of my life to maintain my back.
    Can’t imagine what you’ve gone through Sonia! It’s important to raise awareness of scoliosis and the impact it can have. So many people are just like ‘oh yeah I have a sore back too’. So I think it’s awesome that you’re sharing your story. xx

    • Sonia says

      Oh gosh hun, that’s intense! I have a friend who sees an osteo and swears by them. You’ve gotta do what works for you. I feel your pain – literally! x

  7. Jess says

    I too have scoliosis – it was picked up by our family GP when I was 4 years old and went in for a cold – I remember being told I was lucky – but when I was given a back brace to wear I remember not feeling very lucky- especially through the teenage years!

    I had a 38 degree curve towards the top of back and wore a back brace 23 hours a day until at 16 doctors at the W&Ch were ‘happy’ with my progress and I was able to stop wearing the back brace – although the doctors said it was my decision and couldn’t guarantee the curve wouldn’t return. I remember doctors being fascinated because I was so young & at all my appts( until I was a teen & said no) having endless doctors and trainee doctors being bought in too look at me. In the last few years of wearing my brace I saw a chiropractor weekly which helped and I made significant progress but this was frowned upon by my doctors – I remember the doctor telling my mum off and walking out of the appt when she mentioned it as he had been surprised by progress. Until my last appt the considered me their ‘star patient’ believing that the back brace had done all to work and the wouldn’t acknowledge that the combo of back brace and chiropractic care had been what worked,

    The sore backs can be awful- but I have too say I have gotten used to it my wheat bag, tiger balm and chiropractor help me manage. Well done for raising awareness

    • Sonia says

      Gosh Jess, what a story! Isn’t it weird how we get “used” to always being in a certain degree of pain? Take care of yourself. x

  8. Mumbos says

    Do I know someone with scoliosis? Only my 77 year old Mum who, a fortnight ago, underwent 11 hours of surgery to have rods and pins put in her lower back via a 14 inch incision in the hope that she would not only be pain free for the first time in 20 years, but also stand straight (and a little bit taller please). After 8 days in intensive care, & 5 days in the ward, she is now at rehab working her (now less prominent) butt off doing physiotherapy and hydrotherapy to retrain her confused muscles. We can’t wait for her to get home so that we can go shopping and buy pants which don’t have to have one leg taken up because her body was so crooked. It was a giant, risky, scary procedure for Mum to go through, but she’s been so brave & stoic, so hopefully it will all be worth it. (Definitely worth it to see her standing straight and trying to walk a few steps in intensive care while ‘Wind Beneath My Wings’ was on the radio – tears for days).

    Surgery isn’t always an option, but if it is, there are some amazing people doing really life-changing procedures.

    Thanks for raising awareness of this really important condition, and may your pain-free moments be abundant. Al xo

    • Sonia says

      I’m blown away by your comment. What an amazing woman your mum is and what an incredible family she has around her. I wish your mum a speedy recovery and I hope she continues to go from strength to strength while enjoying this new chapter of her life. x

  9. says

    Thanks for sharing this, Sonia. I had a back injury when I was in year nine and had to wear a flexible, easily removable back brace for all of three months. I HATED it, so can only imagine how difficult wearing your number for so long was! I also have an ‘invisible’ illness (for want of a better word), and like you, my family often forget how it affects me. Another headache? Really? YES REALLY! x

    • Sonia says

      It’s funny how those around us quickly forget what we’ve been through and what we continue to suffer – out of sight, out of mind and all that. If I didn’t have to have another headache for the rest of my life, I’d be ECSTATIC!

  10. says

    Spinal surgery must have been scary Sonia and I can’t imagine how you felt growing up wearing a brace. I did have a good friend who had scoliosis and had a metal rod inserted in her back. Does exercise flare up the pain because my friend said doing too much exercise would give her grief later on.

    • Sonia says

      Yes, if I overdo it on the exercise front, I can really do a number on myself. So I’m finding a combination of walking, yoga and weights work well for me. x

  11. deborah jefferis says

    My beautiful 14 year old niece just had 7hrs of surgery to insert titanium rods etc. Spent the night in ICU. Does everyone have ongoing pain issues. We are hoping after her rehab she will be OK.

    • Sonia says

      I can’t speak on behalf of everyone who has scoliosis or has had surgery, but in my personal experience I do suffer from headaches and neck/shoulder/lower back pain from time to time. You learn to live with a certain level of pain and you also quickly learn your physical limitations. My one piece of advice for your niece would be to always honour her body – keep it fit and strong, always listen to it and take good care of it. x

  12. Mark says

    I admire your courage Sonia! To have come through that painful experience and still be able to talk about it openly and keep a cheerful positive outlook – good on you.

  13. says

    So much to have gone through at such a young age! We have a family friend with a similar condition + rods & screws in her back, she is a very similar height and build to you and has been through some tough times over the years but on the flipside she has grown two babies and run a half marathon. I know all about that glute meets hammy spot 😉

    Thankyou for sharing gorgeous xx

    • Sonia says

      That’s inspiring for me to hear – thanks for sharing your friend’s story! Ugh, how bloody tricky is that spot? So annoying when it flares up.

  14. says

    I’m a bit late to comment because I read this yesterday on my phone. I have scoliosis too. My 53% S shaped curve was discovered at 16, probably late onset, but by that stage I had stopped growing so wearing a brace would be pointless. My parents decided not to operate, which I don’t hold any malice about, they were doing what they thought was best for me. However, I’m now 39 and booked in to see a surgeon next month, because I have lost 4cm in height last year and my curve is not 70%, obviously everything has become highly unstable. The thought of an operation when you are nearly 40, have five kids, three of them triplets and only three years old is very daunting. The thought of coping during recovery with a family makes me head hurt, but thought of caring for my family in chronic pain every minute of every day is a worse situation. I’m not sure what they will be able do now that I’m older either, I guess I’m just going to have to wait and see. I actually took photos the other day of me standing in an outfit that didn’t hide it like I normally do to write a blog post about living with untreated scoliosis as an adult. Because like you have done it’s helpful to share our stories.

    • Sonia says

      Gosh, Caitlin – I can understand why you’d be scared to have surgery… and not to have surgery. What I will say is, your family will inspire you to do all the right things to heal and recovery quickly and they will be there to help you do it. You can do this! Please share your blog post link with me when it goes live. All the best for the road ahead. x

  15. Belinda says

    I don’t have scoliosis, however have had a fusion in c6/7 and removal of spine bone from the rear of my neck. I deal with pain etc and agree with stretching and regular treatment – however……..

    I noticed your comment about sitting at your desk (which for people without spinal issues is bad enough) and how this can really impact the issues. I recently purchased a stand up desk from Varidesk and it has been life changing. It transforms from sitting to standing in three seconds. My neck pain has significantly decreased and I actually find I am more alert as I am not dealing with aches and pains.

    Just thought I would share as it has been so good for my spinal issues. 🙂

  16. Mish Young says

    Scoliosis sufferers unite!!!

    I have this condition too and I moved six months ago, so my previous osteo/kinesiologist is a 90 minute drive away and by the time I’ve driven down, had a treatment and driven back home again … all of his good work is ruined.

    I am in the process of testing out various people in my new local area that have been recommended to me, so far no luck but I am determined to find one because they are worth their weight in gold!

    Good luck beautiful with your back, when you posted on IG that you were home with a sore neck; I knew exactly what you meant and how you felt. I too carry my issues in my neck, my shoulders and my upper back but now thanks to a martial arts injury four years ago I also carry issues in my hips and lower back too … argh some days it’s not worth getting out of bed but we do and we put a smile on our face and we carry on and on “those” days that’s the best that we can do.

    Keep smiling 🙂

    • Sonia says

      Oh Mish – I feel your pain, literally! Best of luck finding someone amazing to treat you. It’s so very important to have that person on speed dial (and see them regularly). x

  17. Kristen Crane says

    I too have scoliosis and by the time I found out about it, it was too late for a brace. I have been to a few different specialists and they all recommended spinal fusion but told me right now it would only be for cosmetic reasons because you can only notice my odd shaped back when I am in a bikini or wearing a tight top. They told me it would progress an average of a degree a year. I am almost 22 and it is my biggest insecurity but surgery is my biggest fear. The chiropractor helps with the pain but I have random muscle spasms around my ribs sometimes and pain in my back and ribs due to cold weather, lifting heavy objects, sleeping odd, and even walking for a long period of time. I had to stop carrying a purse around and stick to carrying a small clutch because carrying a bag around would kill my back. It is good to know that I am not alone and it is nice to hear about other women’s stories about this. My biggest question would be how in the hell am I going to carry a child around for nine months one day and not only that, I won’t be able to hold them for long without my back bothering me.
    I have a double curve one is 50 something degrees and the bottom one is 60 something.

    P.S. I found you through SBB’s Ready Set Blog Module and I am loving and adoring your blog. I am in the process of creating my blog and I cannot wait to publish it! Any tips on getting started and any tips on scoliosis as well?

    • Sonia says

      Kristen, I cannot recommend surgery highly enough. It may seem scary, but at least the short term pain will help you in the long term. My surgeon told me that if I chose to have a baby, it would be more difficult than an average woman with no back condition – but not impossible. I figure if we’re strong enough to live with scoliosis, we will find even more strength to become mothers. And if we’ve got a great support network around us, including medical professionals, then there’s no reason we can’t do anything we choose to do.
      As for starting a blog, the biggest tip I can give you is to just start! Be true to your voice, write about whatever interests yourself (don’t limit yourself) and be consistent and persistent. I’ve shared what I’ve learned so far on this blogging journey in this post, if you’d like to read more: http://www.soniastyling.com/2014/10/10/about-blogging/.
      All the best! x

Trackbacks

  1. […] So inspired was I that I felt the need to share her post with my readers. I loved the honesty that she bought to her story and it was great to hear from someone else dealing with Scoliosis.  My own story is slightly different from Sonia’s in that I have never received treatment so this was a great insight. Here is a small excerpt of my own story which I left as a comment on Sonia’s post-  I was diagnosed at 12 during a check for all students at school and a note was posted to Mum telling her to “watch” it. Fast forward to 2 years later when at 14 I was wearing a striped top and waking in front of Mum when she noticed the stripes were not running in a straight line. I went to the specialist after this and was told I had a 30 degree curve and, as I had stopped growing (yay 160cm for life), there was little they could do. The curve, not severe enough to require surgery, would have been purely a “cosmetic” procedure as the specialist put it so I opted for no treatment. Now at 33 it doesn’t give me too much grief but I do experience the odd ache or pain but mostly tightness in my muscles at times. If you would like to read what lead to Sonia’s diagnosis and treatment and how she is today pop on over to Sonia Styling – Living with Scoliosis. […]

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.