My Scoliosis Journey: The Beginning

I thought I would just backtrack a bit and write about when I first diagnosed with scoliosis when I was 14. How I felt and what I went through in the 10 years between my initial diagnosis and my scoliosis surgery last year.

So…here goes.

It all started when I was 14. I was a normal teenage girl, obsessed with Ben from A1, falling out with my parents, hanging out with friends. Like many teenage girls I felt self-conscious and awkward about my body.
Little did I know that my body issues were about to get so much worse.
From the age of 13, like many other teenage girls, I had started to notice some changes with my body. I only wish that these changes were just puberty related.
 My ribs began to stick out on my right side and my right shoulder blade stuck painfully into the hard plastic chairs during school assembly. My parents were always telling me to ‘stand up straight,’ thinking that I was a “normal” slouchy teenager – they never imagined that there might actually be something seriously wrong with me.
After a few months of complaining about my ribs and shoulder blade to my mum she made an appointment with the Dr, I think mainly just to keep me quiet.  ‘It won’t be anything serious,’ she said ‘but best just to put your mind at ease.’
 To be honest, I didn’t even want to go. I was expecting the Dr to laugh at me and send me home for wasting her time. After all, it was only some sticky out ribs. Maybe she would tell me that I was just too skinny and to go home and eat some cake.
Instead, she asked me to bend forward and touch my toes while she examined my ribs. I was quite athletic at the time; I loved keeping fit and swimming. I remember feeling so proud that I could actually touch my toes that I was half expecting her to applaud me for my amazing flexibility.
‘You have scoliosis.’ She said sympathetically.
The three words that changed my life forever.
I just stared at her, stunned. Scoliosis? What was that? I’d never even heard of it.
‘It’s a curvature of the spine,’ she explained, ‘you’ll have to go for an x-ray to find out how severe it is.’
Tears prickled in my eyes. This sounded serious. I went home, up to my room, slammed the door, lay on my bed and cried. At that moment I thought my life was over, I thought I’d end up in a wheelchair and I’d never be able to play sports again or live a normal life. I just kept thinking ‘why me?’ over and over, I had thought that I was so fit and healthy that it came as a huge shock.
 If I could go back and speak to the teenage me I’d tell her not to be so over-dramatic, but then I didn’t know the first thing about scoliosis – and it scared the hell out of me.
I can still remember the first time I saw the x-ray of my spine. As the consultant put it up on the light box, I just stared at it in disbelief. It was curved into a backward ‘S’ shape and twisted so much that my ribcage was twisted, pushing out my right shoulder blade and forming a ‘rib hump’ on my back. I just couldn’t believe that it looked this severe and yet nobody had even realised there was anything wrong. I didn’t even suffer with any back pain.
‘I can see from the x-ray that you have finished growing,’ the consultant said, ‘this is good news; it means that your curvature should not get drastically worse. However, we will need to keep monitoring it each year .’
The room started spinning as I tried to take in what the consultant was saying. ‘Why did this happen?’ I tried to think of things I might have done to cause this, was it my fault for carrying heavy my heavy school bag on one shoulder?
‘You have what we call Adolescent Idiopathic Scoliosis, we don’t know what causes it but it generally happens during a teenager’s growth spurt.’
He then went on to say that they usually brace teenagers with scoliosis to prevent it getting worse during their growth spurt, but as I’d finished growing bracing would do nothing for me.
Mine was already way too severe for that.
He said I could have an operation where they would make an incision ‘through the front and back’ (his words) and ‘insert metal rods and screws’ into my back to correct the curvature and prevent it getting any worse in the future. However he stressed that this was highly risky and only recommended for ‘cosmetic reasons.’
I was gobsmacked. One minute I was a normal teenager,  the next I was being told I need major surgery.
Even though I longed to look normal, it all sounded so horrific and scary to me that there was no way I was ever having the surgery.

Scoliosis Surgery – All restrictions lifted!

Today I had my one year post op check up and was relieved to be told that all looks ok with the fusion and that all restrictions are now lifted! Woohooo!
My surgeon said I can now do anything I like including rollercoasters and bungee jumping!! (I don’t think so somehow…) It’s amazing that after all I’ve been through I can now just do anything and go back to normal, I think it’s truly amazing how the body recovers and what they can do nowadays.
It’s great because for the first three months I had to wear a brace and was told no bending, lifting or twisting to protect the fusion. I walked for about an hour most days for exercise from about 4 weeks post onwards – I was actually surprised how soon after surgery I could walk again.

After 3 months I was told I could go back to the gym and walk on the treadmill and cycle but no cross trainer or contact sports etc.

For the past 6months I’ve been trying to get on with my life but have not really been sure about what I can / can’t do so it’s soo good to finally be told I can do anything I want to again!

 I was quite worried before the appointment as I know sometimes there are (rare!) complications where the spine doesn’t fuse and I was also worried whether the metalwork would be ok but I was reassured that everything was still in place thankfully. And he thinks that the spine should be fused fully now after a year – this is also a relief as for the past year I’ve been on edge worried to do anything incase I damage the fusion!
It was actually quite an emotional experience going back to the hospital one year on and thinking that this time last year it was just after my surgery and I would have just been taken to the ward from HDU. Walking past the ward I was in today and the smells in the hospital just brought it all back to me. Just thinking about it makes me shudder as I remember how ill I felt and how I could hardly move and I remember just thinking at the time ‘What have I done?!’

It’s taken me 12months to realise that it was worth it and I’m now glad I had the surgery as one year out of my life in the grand scheme of things really isn’t much and overall, it has improved my life and confidence for the better.

Scoliosis Surgery - 1 year post op

Scoliosis Surgery: One Year Post Op

Today I am one whole year post op from my scoliosis correction surgery and I honestly can’t believe how far I’ve come and what I’ve been through in just 12 months. This time last year I had not long woken up in HDU from the extensive 10 hour scoliosis surgery where two rods and 21 screws were inserted into my spine to correct my severe scoliosis curvature and change my life forever.

I will never forget that room, the sounds of the machines, the feel of the wires all over me, the voices, the hospital smells and the cloudy confusion in my head. I remember at that point I was too scared to even look into the future, merely focusing hour by hour on getting better.

If I look at my life as it is today, at that moment one year ago I never thought I would be able to achieve all that I have after such huge life changing surgery.

Really that moment was where my life began.

Today, I am taller, straighter and I am now working full time in a job I enjoy. I also study for a distance learning course and I even manage to go to the gym too! A few months after the surgery I was in so much pain I thought I’d never be able to work full time or even look at a gym again.

I won’t lie, it’s been a tough year for me physically and emotionally, I look back at the early stages of recovery and sometimes I can’t believe that I actually went through all that I did, or was even strong enough to. In a way I am proud of myself for having the courage and determination to get through it and get myself back to work and normality. It’s made me so strong as I now feel I can achieve anything I want to – after all – if I can get through such a massive surgery and come out the other side, I can deal with anything.

The first few weeks of recovery were the worst, I remember the first few days I was confined to my hospital bed and before surgery I never realised how hard that would be. I had never even been in hospital before so it was a bit of a shock! I couldn’t sit up by myself to eat, I couldn’t go to the toilet, I couldn’t even wash myself! After a few days in hospital, your dignity goes right out the window…

For the first few days I was very ill and couldn’t keep anything down. Believe me when you have just had sections of 4 ribs removed (I also had a procedure called a ‘costoplasty‘ to reduce the appearance of my ‘rib hump’ which involved my surgeon cutting sections from my ribs) being sick is incredibly painful. 

I had to have anti-sickness injections injected directly into the muscle of my thigh each time I was sick and I have never had an injection as excruciating as that in my life! I was also put on a drip as I wasn’t eating and as a result I lost half a stone. As the nurses were worried about me losing so much weight they monitored fluids going in and out of me (nice!) and made me see a nutritionist who prescribed me these disgusting drinks, which apparently had 300 calories per bottle, but they also made me sick! 

The situation was not helped by me being in a ward full of women who were not as ill as me and who constantly talked about food… ‘oooh this cake is lovely, I wasn’t fond of the soup tho’ not what you need when the thought of food makes you want to vomit…

I remember lying there one night just praying that one day I’d be able to get out of bed by myself and walk to the toilet – that’s all I wanted. I was actually jealous of other patients in my ward that were getting out of bed by themselves and walking about – as at that point I honestly couldn’t imagine ever being able to do it again. 

I will cover my two weeks in hospital following the surgery in more detail in further posts but I just wanted to highlight that going through this surgery has really made me appreciate being able to do small things like that. Things I used to take for granted everyday.

Today, I still find it hard doing some things like getting dressed (try getting dressed without bending your back – not easy!) bending down, tying my shoelaces and putting tights and socks on but with each month things get easier. I have just learnt to adapt how I do things now.

Again, when I look back to a few months post op where I had to use a grabber to pick things up, a raised toilet seat and I couldn’t even get low enough to sit on the sofa, I realise how far I’ve come.

I remember almost crying a few months ago when I had my first night out since surgery and actually danced again, something I never thought I’d be able to do at one point.

Even after a year, I am not 100% back to “normal” and I sometimes wonder if I ever will be. I still feel stiff (like I have metal rods in my back!) and get sore after a long day or if I am on my feet alot but I am just so thankful that I’ve come out of this surgery and can do all the things I used to do.

It has been tough emotionally on me too, my body changed shape overnight and psychologically this was and still is very difficult for me to deal with. I guess I feel like a different person, like this is not my body. I still check my back in the mirror everyday and worry it will go back to how it was but I have to believe that the metalwork inside me is strong and will hold everything in place.
I wanted to prove with this post that, you CAN lead a normal life after scoliosis surgery, it just takes time to recover. You might not see an improvement week by week during recovery from this surgery, which can be incredibly frustrating, but if you look back months you will notice how you are slowly doing more than you first could. 

This always makes me think of one of my favourite quotes, ‘you can’t see the view if you don’t climb the mountain.’

Here is photograph of my scoliosis scar as it is now, I can’t believe how well it’s faded to be honest!
scoliosis surgery scar
And just for comparison, here is a photograph of my back before scoliosis surgery:

Anyway, I’m off to eat the Haribo cake I was bought to celebrate my one year “rod-i-versay” – yummy 😉

Bye for now!

Louise xx

Image credit: DenisDenis