5 things I do because of my scoliosis...

Image by angela c.

1. I constantly look at my back

When I'm at the gym, or walk past a shop window or mirror, I just can't resist sneaking a look at my back. Sometimes, I swear people think I'm checking myself out. I'm not, I'm just looking at my back. I can't help it. Post-surgery, sometimes it's admiration. As in, I can't believe how straight it looks from the side and that the rib hump is gone, even 5 years later! Although, other times, I'm worried about how it looks from a certain position and in a certain outfit.

2. I'm constantly paranoid people are looking at my back

This was far worse before surgery and immediately after surgery. It was so bad that, at the gym for example, I wouldn't go on the machines at the front of the gym because I knew there would be people working out behind me and I'd be paranoid that they'd be looking at my back. 

Now, 5 years later, day to day I don't worry as much about this but if I'm wearing a skimpy top or bikini I will be more conscious, especially if the top shows my scar and shoulder which still protrudes slightly. 

I still won't get changed in front of people (even people I'm close to) and activities such as swimming/going to the beach still make me uncomfortable as I think people are staring at my back. 

In most cases though, they are probably not. As people without scoliosis probably don't spend as much time staring at people's backs and have their own things to worry about!
 

3. I get back envy

I just can't help myself looking at other people's backs and wishing mine looked like theirs. Especially when I see people wearing backless dresses/tops which I have always longed to wear. I can't help it, I think it just happens subconsciously now. The funny thing is, these people may be looking at me wishing they had something I have. I always remember a lady staring at me once whilst I was swimming and I was certain she was looking at my back. In the end, she came up to me and said: "How do you get such a flat stomach?" I've come to realise that everyone has their own insecurities.  

4. I hate people touching my back 

This is something I just can't stand. Pre and post-surgery. Most of my back is numb so it just feels weird but some parts are quite tender. I'm also conscious of the way it looks and that my screws protrude. For this reason, I avoid back massages, so if I go to a spa, I'll just stick to facials or manicures. I know a massage would make me highly uncomfortable and self-conscious and I'd be worried they may do some damage if they weren't a trained physiotherapist. I do get jealous when friends go for a massage and when my back is sore sometimes I long for one, but I just don't want anyone seeing/touching it. The closest I came was in Thailand when I went for a spa treatment and the lady saw my back and said "broken." Yes, I am, please don't remind me. 

5. I take photos of my back

This was worse before surgery and immediately after. Before surgery, I took photos of my back all the time, in different positions. I was paranoid my scoliosis was getting worse and it took over my life. Around that time, I had literally thousands of pictures of my back on my laptop. I used to think, if anyone found my laptop they'd think I was really weird! 

After surgery, I took photos daily probably for about a year afterwards. As I wasn't working at the time and was at home recovering, it became an obsession. I'd stare at pictures of my back for hours, to make sure nothing had moved/changed. Not only that, I'd also constantly compare pictures of my back/x-rays to those of others who had had scoliosis surgery to see how my correction compared. At the time, I was convinced my correction was not as good as most peoples and I was actually quite unhappy following my surgery. It really was an all-consuming obsession but I think looking back, most of it was in my head.

Luckily, I'm past this stage now and I rarely take photos of my back these days (except for my blog!) Mostly I'm too busy to think about it nowadays but I've also accepted that the correction I got was good, that I was extremely lucky with the outcome and that I need to let go of the past and move on with my life.


The psychological side of scoliosis is so often overlooked, but I think my behaviour over the years shows just how much having scoliosis has affected me psychologically. And I don't think I'm in alone in the way I think/behave. If you have scoliosis, can you relate to any of the above? How has having scoliosis affected your own behaviour? Feel free to comment below :)

Scoliosis Surgery: Now or Never...

This part is all a blur, sometimes I wonder how I got through it at all.

I had to be at the hospital at 3pm on the 28^th July 2010, that morning I was surprisingly calm and a little excited.

I knew it was something I had to deal with and I think after waiting a year I was keen to get it over with and excited to finally deal with it and move on with my life.

When we arrived and I saw all the other people on my ward in their hospital beds I did get a little upset – I’d never been in hospital before and it was all a bit overwhelming.

The worst part was when my family left and I was in hospital alone.

I started to unpack my things and spoke to the lady in the bed next to me who told me all about ‘Percy the Peacock’ who apparently woke everyone on the ward up at 4am each morning.

 I also had some tea and just kind of sat there on my bed, worrying.

I didn’t know what I was supposed to do. Should I get into my pyjamas’? Get into bed? Or just sit on my bed?

My scoliosis surgeon came to see me before I could decide what to do and we spoke a bit about the surgery and if I had any questions.

I felt slightly better after speaking to him but just knew I wouldn’t sleep at all that night.

I was right, I didn’t, despite taking two sleeping tablets the nurses gave me.

I read my book instead, although the words didn’t go in.

The Day of the Surgery

The morning of the surgery I was woken at 6am by the nurses administering the morning pills shortly followed by breakfast. I wasn’t allowed any breakfast but felt so sick with fear I doubt I would have been able to eat a thing anyway.

It all felt kind of surreal, like it wasn’t me this was happening to and I was watching somebody else.

I was made to have a shower, change into some paper pants and a gown and just wait. Those were the longest few hours of my life; every time a nurse walked past the ward I looked up expecting it to be time.  If I’d have known how long it would be until I had another shower I would have taken time to appreciate that ‘last shower.’ As it goes I was so nervous, I kind of showered without even realising what I was doing.

My parents came back to visit me again but weren’t allowed in the ward at this time, so I met them in the day room. It didn’t feel real that in a few minutes I would be called away and be taken for major surgery - it kind of felt like it wasn’t happening to me, like I was in a dream.

We chatted for a bit, I can’t remember what we spoke about, just small talk I guess to pass the time and take our minds off what was about to happen – I couldn’t really concentrate on what was being said if I’m honest.

After what felt like an age I was eventually called through by one of the porters that they were ready for me. I couldn’t help thinking that this could be the last time I would see them again.

I had to sign some forms and answered a few questions then I got into my bed and the porter wheeled me to the operating theatre. He tried to make a few jokes to take my mind off things but it didn’t really help my nerves.

This was it, now or never.

Scoliosis Surgery : A Difficult Decision...

In January 2009 I was referred to a scoliosis surgeon by the spinal specialist that had been monitoring me all these years. He could tell I was confused about what to do and suggested I had a chat with a scoliosis surgeon to see what could be achieved.

I was nervous about seeing an actual scoliosis surgeon; it made it all more real. Would I would be told I needed surgery? How would I cope with this?!

I went to see the scoliosis surgeon in April 2009. During the appointment I was told matter-of-factly that I was at risk of progression by 1-2degrees a year due to the severity of my curves.

He also said he would do the surgery if I wanted it, if not there was not much he could do apart from monitor me every 5 years.

He told me my curves measured around 83 degrees, and that they would start to affect my organs at 85 degrees.

Just to give you an idea of severity, anything of over 50degrees is classed as ‘severe’ and therefore surgery will be offered on the NHS.

After the appointment with the surgeon I was distraught.

The surgeon had confirmed my worst fears – the scoliosis is likely to progress.

At that moment I felt my world collapse, I knew that I’d have to have this surgery, be it now, in a few years or later on in life.

I just didn’t know what to do; it was one of the worst times of my life and one of the hardest decisions I’ve ever had to make. 

Do I have surgery now and risk paralysis?

Or do I have surgery later on in life and hope it wouldn’t get any worse? 

I couldn’t sleep, I couldn’t eat. It was all I thought about. I was terrified and I just didn’t know what to do for the best.

It was worse because I knew that only I could make this decision.

A stressful time

The next few months were some of the worst months of my life. I felt alone and scared and just didn’t know what to do for the best.

My way of dealing with it all and gaining some control was to get as much information on scoliosis and the surgery as I could.

I decided to join a support forum and began chatting to others with scoliosis and who had been through the surgery themselves.

It was a revelation to me. I began to feel less alone and alot happier for the first time in 9 years.

I also began to feel ‘normal’ as I saw pictures of other people’s backs – they looked just like mine!! My back was normal for someone with scoliosis – I wasn’t a freak!

I researched late into the night, read through ALOT of surgery experiences, spoke to others with the condition, read scoliosis surgery books including Scoliosis Surgery: The Definitive Patient's Reference (3rd Edition) and this really helped me to prepare for surgery and learn all the surgical terms and techniques. If I was going to go through this I wanted to know EVERY little thing about it.

A tough decision

Eventually, after months of research, tears and stress, I decided on the surgery.

I knew that it would be difficult and a long recovery, but I knew if I didn’t go through with it, my back would continue to deteriorate with age.

I don’t think I could have made this decision with the support of others on the forum, as reading their experiences and seeing their surgery photos and how well they were doing after surgery made the whole thing seem less scary.

I guess I wanted to take back control of the one thing that had been controlling me all these years.

I just wanted to be normal.

Waiting

I ended up waiting for a whole year for the scoliosis surgery, during this time I suffered panic attacks, nightmares, insomnia, heart palpitations... I was just petrified.

And the fact that I had never been in hospital before didn’t help.

I was scared of the unknown. 

My emotions were everywhere; I kept talking myself out of it, changing my mind from one day to the next, worrying whether this was the right thing to do.

My life had been put on hold whilst I waited, I felt like I couldn’t make plans or pursue the career I wanted as I just didn’t know when my surgery date would be.

I couldn’t see my future as I just didn’t know what would happen.

I knew it was highly unlikely, but I couldn’t stop worrying that something would go wrong and that I’d end up worse off than I was, maybe paralysed – how would my family and I cope?

I felt selfish for putting my family through all this stress too and would often cry myself to sleep.

During the day I went to work as normal, studied for a diploma, and tried my best to smile, enjoy myself and continue my everyday life.

I even went on a holiday to try to relax and forget about it all, but the holiday was ruined by my panic attacks and palpitations.

It was always in the back of my mind.

I just wanted this all to be over.

I concentrated on reading everything I saw about scoliosis and the surgery, getting super fit at the gym and eating healthily.

I wanted to give myself the best possible chance of a smooth operation and recovery.

The day I was actually given my surgery date I was at work, I remember shaking when I read the text from my dad telling me the date.

I stared at my phone for about 10minutes in shock - this was what I had been waiting for all these months...it was now real.

What on earth was I doing?!

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!







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