I am Titanium

I couldn't resist titling this blog without a reference to Sia's Titanium. I can't quite believe I am writing this, but today marks ten years since my spinal fusion. Ten years since my spine became titanium. My titanium anniversary. When 2020 popped around the corner (shortly before Ms Rona) I felt so overwhelmed at the prospect of being 'cured' of my scoliosis successfully for so long. I thought this would be a big story for my year.

However, as many of you who have been following my journey this year will know that strangely that has not been the case. Apart from the casual pandemic 2020 threw us, life also threw cancer at me. I don't want cancer to overshadow this blog post, but in many ways it has overshadowed another battle I had previously had with my body. I want to give another quick disclaimer, I am not writing this as a big pity-party story; I truly want to raise awareness on another topic that has meant a lot to me for a while. 

I think it's fair to say that when people comment on how a body is complicated, I could shout that from the rooftops. Ten years ago my spine decided to grow sideways rather than vertically, and ten years later my body decided to try and stop me functioning properly. Let's just say my body goes from 0-100 really fast! However, I can joke about this now because the reality is I have amazing doctors sorting me out from behind the scenes- even if it seems to be every decade. 

Ten years ago I developed what is known as scoliosis: a curvature of the spine. My case was idiopathic, meaning the doctors had no idea where I developed it from. My family had no genetic history of it, my placement in the womb was normal, and I had not had any dangerous accidents in my lifetime, so some of the normal 'causes' were ruled out. The only possible explanation the doctors could give me was that it was linked to when my period started. This is because when a girl starts her period it induces a growth spurt and would explain my sudden growth spurt (that just had happened to grow the wrong way). I was twelve years old when I was diagnosed, and honestly had no idea how much my life was about to change.

However, as a twelve year old with a spine slowly starting to twist my skeletal frame, I surprisingly did not notice many symptoms. I have always been petite, and only grew concerned (no pun intended) when I remained 4"10 whilst even my shortest friends overtook me. I always knew I was destined to be short, but I just never considered that I might be that short. I was the first out of my friends to get my period, yet they were all growing up quickly, whilst I felt stunted. Still, I brushed it away thinking my body might just need longer. One time in the girls changing rooms when we all got ready for P.E. I noticed a girl roughly the same size as me had a rather prominent spine symmetrically gliding down her back. Once I returned home, I tried to contort myself to look in the mirror and just could not see my spine. As school continued, I began to notice sitting cross-legged in assembly was difficult and desperately wished to be in year eight so I could be upgraded to sit on the chairs (a bizarre layout my school followed). This was strange, as I am also hyper-mobile and had never had any issues with flexibility. If anything I was very flexible. Yet, I had no pain and no reason to be worried.

Continuing on, that summer we went on holiday to France and me being me got incredibly sunburnt on my back one day. My sister and I found it hilarious, as I resembled a raspberry ripple ice cream and I asked her to take a photo so I could see my back. When I looked back at the photo I felt awful at how bad my posture was. I hadn't been slouching so why did I look like Quasimodo? If I'm completely honest, I was more distracted by the sun burn, but I know that was a turning point (I need to stop) when my mum started to question my posture as well. When we returned home, as if by fate, my mum bumped into our GP's wife. She was a very kind woman who I will forever be grateful to before her untimely death later that year. If it wasn't for her, then I could very possibly have delayed going to the doctors for an annual checkup and worsened my condition. 

Arriving at the doctors, as a twelve year old girl I expected there to be no issues. I was on all the school sports teams, I ate healthily and never had any issues apart from being a general worry-pot. I even remember feeling super grown up walking into the room without my mum. The check-up was fine, all until he went to have a look at my spine. The doctor asked me to stand up straight and then to bend over. After what felt like a lifetime of almost doing a downward dog, the doctor said:

'Um, I don't really know how to put this, but I can't feel your spine. Let me just check again.'

Yet again, the GP went on the hunt to feel my spine. He started to feel around my back again, this time nearer the ribs. Sitting back down after what felt like a deafening silence the doctor concluded:

'From what I can feel, you may possibly have something called scoliosis. Scoliosis is where your spine can form a C or S shape rather than growing straight. Your spine is meant to have a natural curve, but yours has possibly curved a little too much. Not to worry though, we recently had a an extreme case of this where someone's spine was twisted in two ways and after months of searching we now have a good specialist we can recommend you to. Is it okay if I have a quick chat with your mum?'

Speechless, I stumbled my way down the stairs of the doctors and told my mum what was going on. When we got home I did the worst possible thing I could do and typed 'scoliosis' into Google. The results were dark and horrific tales of shaved shoulder blades, crippling pain and paralysis all tattooed over different articles. That was the moment when I burst into tears. I had no clue what was going on; I could barely spell the condition and was imagining knives and surgeons pulling apart my body. 

Scoliosis is something that can affect many people, and is more common than people think. 90% of adolescent cases are said to be idiopathic, and roughly 8% of the population in the UK will develop it over the age of 25 (*1.). Although I would say it mostly an idiopathic and random condition, it tends to occur in teenage girls when their period starts, but can also affect men and women in earlier or later life due to genetics or accidents as simple as falling off of a horse. It can also come in two forms, developing a C shape or an S shape (as my doctor informed me), and can sometimes be controlled or aggressive. I was in complete denial until the day of my consultation.

After heading up to Harley Street to meet my consultant, I saw it as a chance to miss school and have a day in London. I was in complete denial about this 'appointment'. Once we arrived, I had an x-ray and patiently awaited the results. My consultant was very friendly and explained that to cure scoliosis there were two forms of treatment. One was placing two titanium rods into the spine, to essentially fuse it into place. Then he informed us that in some cases of scoliosis that are non-aggressive and below 45 degrees you can have a special brace fitted to you so that your spine is supported. I felt relieved at the second option and believed that soon I could go back to normality and this would all be a misunderstanding. Then he put my x-rays on the screen.

I cannot even begin to express the shock when I saw my spine. It looked like a snake crawling through the grass. I was absolutely horrified. To make matters worse, my consultant then proceeded to take a protractor out and measure the curve. It was roughly about 68 degrees out of place. He took one look at me and my family, and very gravely said:

'I'm afraid Odette has a very aggressive form of scoliosis that must be sorted out through surgery. Normally I would put you on the waiting list, but that could be up to sixteen months and frankly this is an emergency case. If Odette does not have this surgery as soon as possible, it could start to affect her ability to function normally. What we will do then, with your consent, is put her in for the spinal fusion surgery next month.'

Before he explained the risks and everything else, my parents sent me downstairs to sit with my sister. I believe my parents were trying to protect me as much as possible and if I'm completely honest I was naively more upset about missing the school's Holland hockey tour and the FOMO attached to that, than what I was about to endure. 'Surgery was for people in accidents and old people, not for people like me', I remember thinking. I am glad I didn't hear the risks; I don't think a twelve year old needs to hear that the surgery could cause paralysis, the same potential risks as a car accident and death. How my parents managed to hide their concern for the next month I have no idea.

My thirteenth birthday was pretty miserable with that hanging over my head, and it confirmed to me that thirteen was an unlucky number. I was so incredibly lucky that the company my dad was working for at the time could cover my operation on their health insurance policy, or I could have potentially been much more damaged. A week before my operation, my x-ray showed that the curve had gone up to 72 degrees which showed in the space of roughly 3-4 weeks my curve was very aggressive. Although I can't specifically remember the details I am pretty sure on the actual day it was about 78 degrees- so my spine was nearly a right angle out of place.

The surgery itself took roughly about 6-8 hours, and I remember on the day my surgeon had already had someone before me so my operation was delayed by three hours. I have so much respect for surgeons in this sense, because the work he did saved my life. He essentially reconstructed my spine, as well as moving my ribs and hips back into place, and he did an amazing job. Every nurse I saw after marvelled at how 'neat' my scar was, whilst I was oblivious to it all. 

The recovery experience was incredibly traumatic, but morphine certainly was a once in a lifetime experience when I convinced my mum that my 'bed was flying'. My mum was amazing as well and stayed by my side the entire time. I almost cried with joy when I saw my sister after five days. I had to learn how to walk again, and spent countless physio sessions pretending to sleep so I wasn't subjected to moving my body. Things like breathing were difficult to do after the surgery, and I was experiencing what was known as 'breakthrough' pain where the skeleton and all the muscles adjust to their new positioning in the body. My body felt full of air from being exposed and open for so long, and I truly wondered if I would ever be able to live a normal life, pain-free after it. I think it's fair to say I developed a very high pain-threshold! 

I spent six weeks off of school, and that was probably the most difficult time of it all. Seeing all of my friends living a normal life, whilst I hobbled around in agonising pain at home was difficult. However, I was determined to do whatever it took to return to normal. I started doing dance DVD's to gain my flexibility back, and once I did return to school I had to use the teachers chair as a back support which did gain a few looks and comments. Although definitely not as much as my mini rucksack-suitcase and pillow that I dragged around so that I did not strain my back, and had ultimate comfort in lessons. 

Roughly about a year into recovery, although I still had regular physiotherapy, despite being told I had the posture of a ballerina, I really struggled with backache and coping with everyday life. I started to investigate how to improve my quality of life and pilates came up a lot. I found a tough but amazing instructor, who suffered from scoliosis herself and who had combatted her pain by strengthening her muscles around her spine (which are actually your core and abs!) At the time I had no idea about the anatomy of the body apart from the skeleton, and always assumed my problem was a 'bone' issue. However, by strengthening my muscles and working on improving my form with my new posture I found it was just as much a 'muscular' issue, and felt the benefits almost immediately. 

As the years have gone on, despite delving between brushing off my condition or having a bizarre attachment to it, I have now accepted it as something to be celebrated. Scoliosis can be life-threatening (believe me I saw examples of that in my consultant's waiting room), but I see my experience as life-changing. Not only did I grow five inches in a day (yay), but I also grew up and realised not to take life for granted. My back scar is something that I am proud of; it reminds me of something I overcame. I also get to have some titanium buddies for the rest of my life, and since the surgery have officially been 'cured'. I have been able to live a normal life and it hasn't stopped me from delving into the world of physical theatre and weight-lifting (although I am certainly no body-builder). So, for the first time in ten years rather than looking at this day with a sense of dread, I am here to celebrate my spinal-fusion-anniversary ten years on.

All my love,

Odette xo

References:

1.) https://online.boneandjoint.org.uk/doi/full/10.1007/s11832-012-0457-4