I’m round the bend (literally not mentally)…. | Part 1

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I can do anything I want – unless….

Unless you give me some reallllyyy awkward sandals to put on, tell me to bend and touch my toes or anything which requires a similar level of flexibility – those are incredibly small things to complain about, and I’m not complaining at all, those are just my little quirks that set me apart from the others!

Finding Out…

Although I’m a little bit crazy, I’m not really around the bend, it’s my spine that decided it wanted to be! Towards the end of year 7, my PE teacher (she knows who she is – and without a doubt, she’s one of my favourites from school 🙂 ) noticed I had a bit of a disfigurement on my right ribcage and told my Mum and Dad at a parent’s evening. Our school had a swimming pool so everything was a bit more visible in a swimming costume! At the time we didn’t really think much of it – I guess we didn’t realise that something like I had could realistically happen, but as they say expect the unexpected! So we went to the doctors – they wanted to investigate it but we still didn’t really think much of it. I had an x-ray and my spine had a curve of 65 degrees! For sure that was far greater than any of us expected and this was at a time where even going to the doctors was an unbelievable and at times almost unbeatable challenge! So given my age, about 11/12 at the time monitoring and non-surgical answers were the initial plan of action.

Becoming mummified

I was referred to a specialist in Cambridge at Addenbrookes hospital. The first step was to get me set up with a brace. For those who don’t know what one is – essentially it’s a piece of carbon fibre moulded to your back, with straps at the back to tighten. The idea being that everything is all kept in place and any curve doesn’t get worse. The production of the brace is an interesting one. Of course I can only speak for myself and my experiences but essentially this involved being put on an ‘oxford frame’. I’m fairly sure that’s what it’s called – but it’s this metal frame which keeps you in the air whilst the moulding takes place.  I then got plaster of paris bandages wrapped around you to create a plaster cast of my back for a brace to be created from it. I can remember this being a strange experience with just very strange sensations as the plaster of paris dried. A few weeks later I then returned for the final brace fitting. This essentially just the last few alterations to make sure everything is as comfortable as they can be.

After I had the final fitting, I had a few instructions, the first being that I had to wear it for 23 out of 24 hours, I also couldn’t get it wet, and I also had to wear a vest underneath the brace to stop it rubbing and just for additional comfort. I had my brace space themed, complete with blue swirls, and I remember feeling almost quite excited. I was sort of bribed with a trip into Cambridge town centre after the appointment to go clothes shopping ;). Having said that the clothes were totally necessary – because if you’re wearing a vest and a chunky plastic thing, you don’t have a lot of choice if your current wardrobe doesn’t fit or clings in allll the wrong places!

I got used to the brace fairly quickly – almost felt a bit like new shoes feel when you first head out of the shops with them. Strange – but not uncomfortable. The main challenge I faced was the hot weather. Anyone who knows me now knows I absolutely hate heat – give me shivering arctic conditions any day.  Then if you put me in 30 degree heat on a hot summers day in a vest, giant plastic thing, then clothes over the top – a furnace!! Initially, I was also told to take the brace off for physical activity like PE, but that was also a challenge. Over time my muscles got used to not having to do any work at all to keep my back up straight – I couldn’t do the brace up tight enough after PE to give me any kind of support at all. As I result I just kept it on – not sure if that was right or not, but it was extra protection from bumps and knocks! The thing with a brace is you need someone else to do it up and someone who isn’t afraid of yanking it as hard as they humanly possibly can – another thing I didn’t like was how visible it was if it wasn’t done up tight enough. But in retrospect these are so minor – I could have been, particularly as I found out afterwards, so so so much worse.

We’ll try, try and try again…

Sadly, towards the end of 2010, they confirmed the brace wasn’t really creating any difference in my spine – yes, it might have stayed in place a bit more but the curve was still a big old 65 degrees. This was the point at which an operation was first mentioned. Don’t forget I was still at the stage of the GPs filling me with dread!

We all wanted to do anything and everything to stop this from happening – next stop the chiropractor. There’s no clear evidence (as we knew then) whether or not these kind of treatments have any effect at all, but at this point we were willing to try anything. So we headed off to our local chiropractor and embarked on a treatment programme. This ranged from physical manipulation of my spine to really weird exercises. These included things like using a balance board and even doing the alphabet backwards which I was completely rubbish at to start with – I’m still not great! Meanwhile I started doing all sorts of exercises in an effort to do something, some more stupid than others – swimming, hanging from door frames, that kind of thing!

As strange as it sounds I really enjoyed the chiropractic treatment and I came out of each one buzzing – I don’t really know why but equally, it was probably worth it just for the positivity element. Unfortunately this still didn’t work – my curve was – you guessed it – 65 degrees. This brings me to an appointment I had in early January 2011. This was an appointment I’d rather forget. I had an x-ray as usual and essentially got told that I was an urgent case – and that my spine could ‘collapse’ – which of course is a very scary word for a 12 year old petrified of anything health related to hear. I was told I’d have the operation by April 2011. At this point as well, my spine was a purely cosmetic issue – I wasn’t really in any pain. I was being told it was urgent yet all I could see was a slight disfigurement on my back – so what was the point?

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It might happen, It will happen

What followed was a series of issues with the NHS and a bit of a battle. Despite these issues I still think the NHS is an incredible organisation so I really don’t want this article to be all about the issues. In short – we waited and we waited. We waited through the entirety of the school 6 week summer holiday and still nothing. Finally – in early September I had my pre-op appointment letter – the appointment would be 12th September. During this appointment I had a whole range of tests to make sure I was ready for surgery – lung function, an x-ray, MRI that kind of thing. The strangest of the tests was a neurology one. I had electrodes stuck to my head as they measured my nervous system. They send electrical impulses down your body and funny things happen – like my thumb at one stage was moving of its own accord! During this appointment we also decided my surgery date would be Monday 26th September 2011. 

The next challenge I had to face was all the ‘lasts’ – the last time to do different bits and pieces before the surgery. I had no idea what would happen or how different things would be after the operation. It’s funny the the things which are suddenly so important, like my last violin lesson, the last day at school – even a school open evening. They all felt like really weird days. Someone later told me my operation was the equivalent danger level of a heart or lung transplant – thank goodness I didn’t know that before! Weird days, but equally I’m still typing this now, so spoiler alert, all worked out okay!

D-Day

This brings us to the weekend before the operation – of course, still verrrrryy scared. It’s so so strange what you remember but… We went to the hospital the night before as there was quite an early start in the morning. Weirdly, I remember being in the car with Mum and Dad – I know I was drinking an orange Lucozade at the time! We got to the hospital, and we were staying in one of the rooms they have for people who are having an operation the following day. Mum, Dad and I got the keys then we headed to the main hospital grounds for dinner. This would be my last meal before the operation – it needed to be a good one! If I’m right, I think we went to Burger King, then we all had dinner sat outside in the not-so-picturesque surroundings of a hospital exterior. Dad stayed with us as long as he could as I could only have one guest with me overnight. There was just a huge feeling of unease, and on my part terror over the following day.  I can still remember the room we had – it had a very student accommodation feel to it, essentially a small flat, we had a room and a communal kitchen. I’m pretty sure I was given a baby’s cot however, which was quickly sorted out. I’ve always said it’s funny what you remember, I’m pretty sure me and Mum were watching the BBCs ‘Spooks’ that night. I’m not sure that was the optimum TV programme for a 12 year old, but equally I’m pretty sure the theory there was to distract :). We also had a final reminder of our instructions. No food, but I could drink plain water until early morning before the operation.

We woke up early that morning and slept as good as could be expected – our first stop ward F2 or potentially F5 – but number’s irrelevant. This was essentially a ward for kids just before they went to more or less any kind of operation – big or small. A visit from the anaesthesiologist had one huge revelation – I actually wasn’t allowed to drink fluids so the operation had to be delayed. Just to let the nerves build a bit more – what fun! I also got given this ‘pre-med’ – essentially a really VILE tasting drink designed to make you relax or be sleepy before your operation. I think I got given it a bit late as I’m not sure it made any difference at all, but equally I have no idea what the alternative would have been!! After a fair bit of waiting and seeing all kinds of doctors and nurses I’d go in for the operation. This was my first experience of the hospital TV. It’s amazing how far technology has advanced as now, looking back on it I can’t see what’s special about it at all. But, it moved, I think it was touchscreen therefore it appealed :). After a period of time I got taken down for the operation with my Mum and my childhood bear.I was given 100% assurance my bear would stay with me for the duration – I’m still not quite sure how he (the bear) has overcome the post traumatic stress of seeing my insides – but he seems to be holding up quite well to this day ;). I arrived by a trolley into this medical looking room to have the anaesthetic. This was weirdly the bit I was least looking forward to. I’d had in my head that the tricky bit will be up until I get the anaesthetic, after that, it’s onwards and upwards. I had the anaesthetic, a white milky liquid, by injection. I have no idea what happened in that room which is probably a good thing 😉

As far as what actually happens in the operation, I had parts of my spine broken up into small pieces, almost ‘bone shavings’ to act as a bone graft, a set of screws put either side of my spine along with two rods either side. These then all get tightened up so you’re spine is straightened as much as possible. 26th September 2011 saw me grow about 2 inches in the space of hours!

After the operation I got taken to a recovery area for 20-30 minutes, before I saw Mum and Dad after the operation. In the next post, I’ll take you through what happened after that, and the recovery which followed. Stay tuned for part 2!

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