I am splitting this blog into separate parts which fully explain my scoliosis experience. This is part 1 which is the beginning of my journey and includes my diagnosis and getting a back brace. In separate blog points I will explain my surgery, recovery and where I am now. Please read the full post and my others as although I have tried to be brutally honest throughout, it does have a happy ending and I’m so grateful and thankful for my new back! That being said, I have tried to give an honest reflecting of the good, the bad and the ugly and tell the truth. This is just my experience and everyone’s back, pain tolerance and journey is completely different. If you have scoliosis you may experience some of the things I have, or you may not have, but I wanted to document my journey for myself and for others if they are interested. As I said, every step of my journey contributed to who I am today and I am eternally grateful for where I am now and the doctors, surgeons, nurses, family and friends who helped me along the way. I also want to clarify that I am also not a doctor (due to my A Level results!, jokes!) so I have provided some links below and information about scoliosis which I recommend reading. Once again this is just my experience!
What is scoliosis? I had adolescent idiopathic scoliosis which means that I developed my curved spine as a teenager around the age of 12 and was not born with it. I also did nothing to contribute to my condition and I consider myself lucky enough to experience this test so I now know my strength from going through this hurdle. Scoliosis is the curvature of the spine and in my case meant my shoulders were uneven and my spine was an ‘S’ shape although it did not begin as obvious. I have also included some X-ray photos which show it clearly and give you an indication of what’s going on in the inside!
So what’s my backstory?
I first went to the doctor for an unrelated x-ray which led to them randomly noticing a very slight curve of the spine. At the time we didn’t think much of it and it took around a year for us/the doctors to chase it up. Then a year later when I was 12 I had my first appointment at Great Ormond Street Hospital (GOSH), which is a children’s hospital in central London. It’s about an hour trek from where I live and it is quite a journey but I wanted to be seen here as it is a specialist children’s hospital which does so much amazing work and has incredible facilities. The night before my first appointment, my mum, who is a physiotherapist which worked out pretty good for me (!!) asked me to bend over and did notice a slight curve in my spine but nothing significant or that out of the ordinary. At the time, I personally did not know anything about scoliosis other than the fact I needed to have some x-rays and that someone in my school year wore a back brace, but she acted like a trooper and never vocally complained about it.
Anyways, I went to my first appointment and had some x-rays which wasn’t as daunting as I thought it would be because the atmosphere and the staff at GOSH are so comforting and I also didn’t fully realise I had a problem. After the x-rays were taken I went to see the specialist doctor who had my x-ray results up on the screen and I was shocked to visually see a curve which made it much more real and daunting. I went in thinking that I’d have a few check ups every couple of years, but instead the doctor diagnosed me and said I had a 20 degree curve of my spine and that I’d need to wear a back brace 23 hours a day and I’d most likely need surgery. I definitely didn’t realise fully what that entailed at the time and the doctors told me the back brace was like a jacket, which I later found out that it’s not. The doctor sent me to be measured and moulded for a brace in the orthotics department which was just like a standard bra fitting! I think this is my most prominent memory of my whole experience was when I got my back brace. It was nothing like the ‘doctor ordered!’ and was a hard plastic white hollow shell with lining inside to make it not dig in as much and went up under one armpit, under my boobs and all the way down over my hips, with velcro straps at the back to tighten it. Although it is ‘moulded’ it looked like I was wearing a table as hips and could pop a baby out with no problem! There’s enough stigma and self-consciousness for teenage girls going through puberty anyway but having something that over emphasised areas that stood out in the PE locker room was extremely uncomfortable alone. The first time I wore it I didn’t stop crying all day and had no idea how I’d wear it 23 hours a day. But I did learn some tips and tricks, like to wear a t-shirt underneath (I wore the Primark basic skin-tight t-shirts to make it more comfortable and not too hot) and found it best when sleeping at night as it takes some of the pressure off. It took time to get a routine and know what to wear as it was very difficult to wear clothes. I had to get all new school uniform and resorted to leggings under the brace and a baggy top on weekends, which is standard Gina attire to be honest!
In such a short time everything changed and I had to prepare myself to go down a completely different path. This may sound dramatic but at the age of 12-14 you change the most in my opinion. It’s hard enough with puberty and school dramas like who fancied who and forging a fake sick note of your mum’s signature because you didn’t want to get a detention for not having your PE kit, but adding this to the mix really changed me. Looking back it did make me who I am and I still do go on about it but it’s such a prominent part of my life due to my age. I’d say it completely shaped me and I know I’m not defined by my back anymore but it moulded who I am and some of my favourite traits of myself. For example, I consider myself a caring person and always the first to offer support to my friends. I also give really good back massages so that’s a plus! In this time I also learnt who my true friends were, through some strange friendship test like all go to the nurse and watch me put on my brace 😂 I’d have about 5 girls sit there whilst I’d put it on and take turns in doing my strap up and always arguing about who could leave lessons early with me so I wouldn’t get crushed in the corridor or skip the lunch queue (and I wonder why I was so popular!!) But in all honesty I can’t thank those girls enough for all the support and helping me not feel like an outsider! Thanks for always having my back, literally!!
In terms of pain before my surgery, I’d have to take pain killers and heat pads multiple times a day and my mum would do physio on me daily where we’d count the number of times my back would click (record was 476!). I missed out on a lot including PE which was not an issue as I was more than happy to sit out as I’m more of a ‘watch people do sport and feel like I’m exercising’ sort of gal. Another issue I did face was not everyone understood or could see my pain and thought I was being dramatic. This goes to show that just because you don’t see a cast doesn’t mean it isn’t there. Just because I’m in no pain one day, doesn’t mean I never get pain. I experienced this judgement most from teachers which wasn’t something that I thought I would have to go through. As they didn’t see my brace or see a physical mark, it was often regarded as me being dramatic and caused me to have bad relationships with my teachers. For instance, once I wrote on my hand the time I needed to leave for an appointment and got told “don’t write on your hand. You’ve got enough problems with your body” so in return I stormed out of class and got to my appointment early! I know this is a huge issue for mental health illnesses as people don’t physically see the effects so presume there isn’t any. A big turning point for me was when I had my X-rays printed and showed it to my teachers and they were shocked at what was actually going on in the inside. The doctor also told me that I hid my curve very well until I needed surgery but on the X-rays it was significantly prominent. Seeing the X-rays also helped me to see that I wasn’t being dramatic and that I did have a worsening spine and was rightfully allowed to complain.
For me, the worst part of the back brace was that it never helped me, maybe it slowed the growth down but my spine progressed to over 60 degrees whilst wearing my brace which was obviously frustrating. In terms of my friend who had scoliosis she had very little pain so it goes to show that everyone’s experience is different.
Sorry its a bit of a sad tone to end part one, but I promised everything got better than there and I did have many laughs wearing that brace, pretending I had rock hard abs by knocking on my brace, or confusing the teacher by knocking on it so they’d think someone was at the door! These are the memories I remember most and I learnt to not complain but use my uniqueness for smiles, laughs and being a good sport!
That’s all for now and please contact me with any questions and remember this is just my experience! Also look out for my operation post to come and find out what I got up to when I was on morphine!
Always got your back,