ISAD, Saturday 25th June, 2016 #scoliosisgotyourback

Saturday 25th June marks International Scoliosis Awareness Day (ISAD)!

To help raise awareness of scoliosis, the Scoliosis Association UK are running a very special campaign this year called "Got Your Back" - you can support the campaign in various exciting ways including organising fundraising, purchasing campaign merchandise or simply changing your social media profile picture to the official logo.

Full details of the campaign and ways to get involved are here:

http://www.sauk.org.uk/get-involved/international-scoliosis-awareness-day 

Help raise awareness of scoliosis by getting involved today - tweet using the hashtag #scoliosisgotyourback 


Louise X

Scoliosis Infographic: Facts about scoliosis

I thought I'd share this useful infographic with you, which highlights some some helpful facts and statistics on scoliosis. I found it really interesting as I have myself have Adolescent Idiopathic Scoliosis. 

Hope this helps. 

Louise :) X

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 :)

3 years post op!

Today I am three years post op from my scoliosis surgery and I really can't believe how fast that time has gone. So much has changed in the last three years and I've come so far, I am now very busy studying an MSc course whilst working full time - hence why I havent updated my blog for a while! I've been so busy getting an assignment done this month that I almost forgot that it was my three year scoliosis surgery anniversary. In a way, I think that's a good thing as it shows that my back doesn't rule my life anymore.

So how does my back feel at three years post op? I think in all honesty it's still improving. In the past 6 months I've noticed that I seem to have got some of my flexibility back that I thought was gone forever. 

Yes, I still can't bend the fused part of my back (T3-L3) BUT I can bend from my hips and recently I've noticed that when I'm sitting down I can bend like I used to before surgery to pick something off the floor! This may not seem like much to some people but for me this is a big thing and it makes me so happy that I can now do this. I can also bend quite far from my waist now, although I can't touch my toes (yet!) 

I think it just goes to show how long the recovery can take, it still surprises me the differences I notice in my back month by month - even now.

Post Scoliosis Surgery... Physio

I've been having physio ever since my scoliosis surgery just over a year ago but I'm still not 100% there. 

My lower back feels very weak and starts to hurt at the end of the day or if I've been standing or sitting for some time, although lying down provides relief.  When I'm at the gym or walking I often feel like holding my lower back for support. My surgeon has said this is normal as I have such a long fusion as the last 3 remaining discs are taking all the pressure, he said over time it should improve as my back gets stronger.

I've been having physio to strengthen my lower back and also my right shoulder over the past 6months or so, as the muscles were cut through to get to my ribs there is very little muscle there now which has caused my right scapula to 'wing.'


The exercises I was given initially were very gentle 'pilates' type exercises to avoid damaging the fusion and also some exercises using a resistance band for my shoulder issue.


Today I discussed with my physio the possibility of using a pilates ball to strengthen my 'core' muscles, as the core muscles effectively support the lower back. So if these are strong this can help keep the lower back strong (which is important for me as I only have 3 unfused discs at the bottom of my spine) and reduce pain. She said she can give me some gentle exercises to use with the pilates ball at my next appointment but that just sitting on it can really help. 


So, I'm going to get one and see if it helps just sitting on it for half an hour a day while watching TV. Watch this space!

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?!

My Scoliosis Journey: A Secret Struggle

After the initial diagnosis of my scoliosis at 14, I was monitored by an orthopaedic specialist over the next few years – thankfully my scoliosis didn’t get any worse.

But the psychological damage did.

You would be surprised at how much having a twisted back affects your self-esteem, especially as a teenage girl.

I felt ugly and deformed; I spent all my time in large, baggy clothes – wearing a size 12 when I was a size 8 to hide my rib hump.

I’ve lost count over the amount of times I burst into tears over how I looked.

How many times I saw my back in one of those three-way mirrors in changing rooms, or a photograph and just wanted to cry.

It’s funny; before I was told about my scoliosis I was proud of my body, now I just wanted to hide it.

I hated summer and holidays the most. I longed to be like the other girls on the beach, able to wear little vest tops and bikinis without feeling self-conscious. I was young and slim; I should have been showing off my body not hiding under baggy clothes.

Every year when I went to see the specialist I just wanted to scream out ‘please just fix my back’ but I was too scared of the risks and my parents were dead against the surgery, worried I would end up worse off.

They didn’t realise how much I suffered psychologically, how I constantly looked at other people’s backs and wished I looked like them.

I knew the curves were bad but I buried my head in the sand, I just didn’t want to deal with it so I convinced myself they would never get worse and I tried to get on with my life.  I went to university, went out clubbing, got a boyfriend, had nice holidays. I just wanted to be normal, enjoy myself for a change. 

All the while with this hanging over me - always in the back of my mind.

I didn’t tell anyone about my back, my friends at uni, not even my boyfriend. I was too ashamed.

In a way, I think this made it worse as I had no-one to talk to. I became withdrawn and unsociable. If I only I'd have had the courage to talk to my friends about it I would have felt so much better, I know this now. But sometimes it's hard to actually admit you have a condition and deal with it.

From bad to worse...

When I was 21 the pain started.

Three years of drinking, partying, eating junk and lack of exercise whilst at university had taken its toll on my back.

I developed excruciating muscle spasms around my curves as the muscles struggled to support my curving spine. I also started to suffer from painful pins and needles and numbness in parts of my back from the curve pressing on my spinal cord.

I tried everything to get rid of the pain.

First was the NHS physio, which in my opinion was a complete waste of time. In my experience, the NHS physio’s I saw  didn’t seem to know what to do with people who have scoliosis. A few weeks of stretching exercises and I was “cured” and sent on my way, still in pain.

Determined to get rid of my pain I tried acupuncture, swimming, took Pilates classes and joined a gym in an attempt to get fit and strengthen my back. I even resorted  to paying privately for more physio, which I really couldn’t afford. 

The weekly massages from the private physio as well as the exercise helped to manage the pain, but it was always there.

For the next couple of years I was miserable, I felt deformed and was in pain.

To make matters worse I started researching scoliosis on the Internet, and was distraught at what I was reading. Scoliosis did get worse. Especially severe scoliosis like mine, in fact it could progress by 1-2 degree a year due to gravity pulling on the spine. I also read that the strain placed on the back during pregnancy and also the menopause could cause scoliosis to progress.

This was not what I had been told by the specialists I’d seen in the past, in fact, they gave me the impression that once I’d stopped growing it wouldn’t get worse.

The worst part was that I read that if it progressed so far it could have serious consequences as the twisting rib cage could push against the heart and lungs causing physical damage.

I began to read stories on forums about people with untreated scoliosis that had progressed so much they were on oxygen to help them breathe.

As you can imagine I got myself into quite a state reading about what could happen to me if my scoliosis was left to progress throughout my life.

I became depressed and felt that I had nothing to look forward to in life – either a horrific operation or let myself become more and more deformed, potentially compromising my health.

I tried to convey my worries to my parents, but it usually ended in a row, with them telling me to stop reading things on the Internet and to believe the specialists we had seen.

The more stories I read though, the more I believed that it would get worse.

These were real people, all with similar stories, discharged as teenagers only to be having surgery in their 40s after their curves had progressed during the menopause.  

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.