5 #SpinalFusionProblems

Don't get me wrong, I'm 100% glad that I had scoliosis surgery and now, six years on, I'm definitely better off than I was before.

However, if you've had scoliosis surgery (and have a long fusion like me) you may be able to identify with some of these 5 frustrating / awkward #spinalfusionproblems... 

1. Pulling a muscle trying to paint your toenails (or fasten your strappy sandals!)

Pic by

Marc Gautier

It's not that I CAN'T paint my toenails or fasten my strappy sandals, it's just that it can be quite awkward and I have to sit down and sort of bend my leg in an unnatural position to reach, which usually results in me pulling a muscle in my leg!! This also applies to putting on socks and tying shoe laces. I WILL fall over if I'm not sat down!





2. Flooding the bathroom trying to wash your face

Since my surgery, I find it awkward washing my face in the sink. This is because it's pretty difficult for me to bend right down to the level of the sink, so I usually end up squatting by the side of it and then proceeding to splash water all over the bathroom. Now I stick to face wipes, or I just wash my face in the shower.

3. Hard backed chairs = evil

Evil chair. Pic by

Elliott Brown

No, just no. Hard backed chairs should be banned! Since surgery I'm mostly comfortable sitting on stools (my rods support me amazingly well, so I don't actually need to lean against anything) or chairs/sofas with cushions. Anything else is super uncomfortable, mostly because I can't bend my back to fit the shape of the chair. So in hard backed chairs, I usually end up sitting forward with my body away from the back of the chair. Hard backed, plastic sun loungers are also evil and lying flat on the floor is a definite no.



4. Shaving your legs

Kind of related to point number one. It's hard to reach and so I usually end up in awkward positions trying to reach parts of my leg, pulling a muscle again or with patches I can't reach. One of my fellow scoliosis surgery survivor friends said she taped her shaver to a stick to make it easier for her to reach, which made me laugh..! Worth a try!!

5. Being asked to a Yoga class

Not recommended. Pic by

Sarah Siblik

Erm, awkward.









These are just a few awkward situations I have found myself in post scoliosis surgery. Big deal? Not really. Frustrating? Sometimes.  But you've just got to laugh at about it.

Are there any awkward situations you've found yourself in due to your spinal fusion? Let me know in the comments below!

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

Scoliosis and Bras - Survey

Image by

Martijn van Exel

I don't know about you, but I have always had a love/hate relationship with bras.

Before my scoliosis surgery, I found that bra straps used to dig into my rib hump side, causing discomfort and pain, as well as the damn strap always falling off one side due to my uneven shoulders.

Post surgery, I still have the irritating issue with the bra strap falling down on one side, and as I still have some rotation of the ribs, I usually find one cup doesn't always fit as well as the other (although this did improve slightly post surgery). This I have found very frustrating over the years and also a bit upsetting if I'm honest.

It's for these reasons that I tend to avoid shopping in underwear shops, trying on bras in said underwear shops (3 way mirrors = EVIL) and bra fittings in general - in fact, the thought of having a bra fitting fills me with dread. I also don't spend huge amounts of money on bras because they never fit me properly, so what's the point?

I'm sure I'm not alone in feeling this way! If you have scoliosis, share any of these bra frustrations and would like to contribute towards an exciting related project (by fellow scoliosis survivor Michaela), I would be very grateful if you could fill in this quick survey by clicking on the link below:

Bra Complaints for women with Scoliosis - Survey

Thank you :-)

Louise XX

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.

Richard III: Channel 4 documentary and scoliosis

It's all over the news at the minute, it has been confirmed that the skeleton buried underneath a car park in Leicester discovered several months ago is in fact Richard III. 

What interested me more though, was his skeleton showed that he had scoliosis, which shows just how long the condition has been around.

I can sympathise with Richard III, as looking at his skeleton reminded me of my curve pre-surgery and I really felt for the guy knowing the pain and discomfort he must have been in everyday. Having said that, he didn't seem to let his scoliosis stop him, either!

I felt compelled to write this post after watching the Channel 4 documentary about Richard III last night, which showed how his skeleton was found. I was looking forward to watching it, as I felt it would be a real chance for Channel 4 to raise awareness of scoliosis in a positive and inspiring way. In some ways, I actually felt proud to be connected to a former King through my scoliosis.

What I witnessed, in fact, was a poorly researched programme which to me reflected scoliosis in a highly negative and offensive way.

Scoliosis was portrayed negatively to millions of people, with frequent uses of offensive words being inaccurately used to describe scoliosis throughout the documentary.

What upsets me more, is that there are now many people out there, including children in schools, who will think it's ok to use these offensive words, not just as a result of this programme but also the other inaccurate media coverage out there about Richard III and his scoliosis. It makes me so mad.

Scoliosis effects your self confidence and body image in a big way, I should know, and the insensitive comments throughout this particular documentary and other media coverage will not help those with the condition and are extremely hurtful.

This was a prime opportunity for Channel 4 to promote a positive message about scoliosis including understanding and acceptance but for me this programme did the exact opposite.

I have already made a complaint to Channel 4 but I think it highlights more than ever how important it is to raise awareness of scoliosis and set the record STRAIGHT (so to speak!) :-) about what it really involves and it how it affects people's lives everyday.

Winter Warmers - Pain Relief

Image by insane gal via Flickr

With winter brings dark nights, cold frosty/snowy days and for me and many other scoliosis sufferers - increased back pain.

The cold weather tends to cause an achy type pain and extra stiffness in my lower back, which for some reason I've noticed even more since my surgery and have noticed even more over the past few days. This is one of the reasons I detest winter, that and fear of slipping on icy ground and damaging my metalwork.

During winter, you'll usually find me with a hot water bottle or heat pad permanently attached to my back, as I find heat therapy really helps to relieve my aches and pains. 

As we've been hit by freezing temperatures and snow this week in the UK, I thought I'd share some useful tips/products that I've found and that could help get us through the upcoming winter months.

1. Heat Pads

I found this mobile heat pad on stressnomore.co.uk and think it looks perfect as you can actually strap it round your body! It beats having a hot water bottle tucked down the back of my trousers!

 
This one is also from stressnomore.co.uk. The Beurer HK63 Rheumatherm Magnetic Heating Pad cleverly incorporates heat and magnetic therapy for pain relief.




Amazon also have a good selection of heat pads.

2. Hot water bottles

A scoliosis sufferers best friend! I find my hot water bottle works wonders on my aching back and feels like bliss.

3. A hot bath / shower

If you find having a bath comfortable it can really help the pain. I actually find having a bath quite uncomfortable post-surgery as I cant bend my back against the bath and just have to sit upright which isnt very comfortable! Perhaps a bath pillow would help but I'm yet to find a decent one. I also find it quite difficult getting in and out of the bath so I prefer to have a shower which can be just as good for pain relief!

4. A lie down on a memory foam mattress / topper

For me, memory foam is the best invention ever and a lie down on my memory foam topper instantly relieves my pain. Lots of cushions also help.

5. Thermal tops

I've recently tried wearing a thermal vest top underneath my clothes which really helps to keep the cold out of my back.

Failing the above, a holiday to a nice hot beach will also do just fine! ;)

2 year post op checkup

Today I had my 2 year post op checkup. 

After scoliosis surgery you generally get seen for a checkup after 3 months, after 6 months, after 1 year and after 2 years, so this was my final post surgery checkup (hooray!) 

Like last year, it was very weird going back to the hospital I had my surgery at, it's easy to forget what you went through sometimes but going back there again and walking past the ward I was on kind of brought it all back. 

Luckily, I managed to see my surgeon for this appointment (not a registrar) which was good news. He checked my xrays and said all the metalwork looks as though it's in the right place and he thinks it's fused now which is great news. 

I told him that I'm doing alot of activities post op such as going to the gym regularly, aeorbics, zumba etc and that I was worried I was doing too much. His answer was no I won't be doing too much and that I can do anything I want to do now which is good to hear, sometimes you just need a little reassurance. 
 
What made me laugh though today was the guys who did my xrays were fascinated by them, their eyes almost popped out of their sockets when they saw them and they kept asking me loads of questions about my spine and calling me the bionic lady! Surely they've seen other scoliosis post op xrays before...I do like people's reactions to them though and straight after the guy who did the xrays had seen them he was offering to carry everything for me, like I couldn't lift a basket with my clothes in...Funny how people treat you differently after they've seen the xrays!

Anyway it was a good appointment overall and he said I dont have to go back again now or have any further xrays (woohoooo!) unless I have any issues. 

This is kind of a big thing for me, considering I have been having checkups on my back and xrays every year since I was 14. I've had more than enough xrays to last a lifetime. It's a bit weird to think I'll never have to go for another checkup or wear one of those fetching hospital gowns for my yearly xray again (fingers crossed).

Scoliosis Surgery Questions

For people that have just been told they need scoliosis surgery or are waiting for the surgery it can be a difficult and highly stressful time, I know because I've been there and had the panic attacks to prove it! 

I received an email last week with some questions about scoliosis surgery so I thought I would post the answers here incase they help others waiting for/deciding on surgery:

Why did you consider surgery? 

The reason I considered surgery was because I had a severe curve (over 80 degrees) and was told by my consultant that because it was so large, gravity over time could cause it to get worse by 1-2 degrees each year. 

I also had a lot of pain caused by muscle knots around my curve that were extremely sore and painful every day. 

I didn't really want the thought of it getting worse hanging over me and then having to face the surgery with an extremely large curve later in life when recovery would be much tougher. 

I know there is an argument that perhaps waiting would mean in the future surgical procedures would become more advanced and maybe it would be less invasive/there would be better techniques but I was young and fit and wanted to get it over with and move on (get a career etc as I felt my life was on hold for a while) rather than have it hanging over me.

It really is the toughest decision I have ever made though and definitely not one to consider lightly.

It's best to talk to as many as people as possible, get advice and use the forums/scoliosis surgery book that I recommend on here as it is very good for explaining everything. 

Did you try any other solutions?

I did try lots of physio to help with pain, I used to pay privately to have weekly massages to help my muscle knots but they always came back straight away and this would only provide temporary relief. 

I also tried accupuncture, heat therapy and did pilates and swimming. 

Swimming was the thing that helped me the most, I could manage my pain and muscle knots through swimming quite well and my back always felt great after a swim.

How long was the operation? 10 hours

What did you feel like when you woke up?

When I woke up I remember feeling as light as air and in no pain whatsoever - thank god for morphine eh?! I didnt really have much concept of time and kept falling asleep and waking up again and it would be hours later, it was all very surreal to be honest. I was also very thirsty, my mouth was incredibly dry. 

I could talk to my family ok, I remember talking to my dad on the phone at one point the night after my surgery as he was worried so he rang ICU to see how I was and they let him speak to me!

The next day I thought I had dreamt it and I can't remember what I said. 

It can be quite scary for your family seeing you with all your tubes etc but you will feel ok and quite comfortable when you wake up, they make sure of that.

What is the pain like?

The pain straight after surgery is well controlled with morphine and strong painkillers. The worst part for me was when I came off ICU and went into the ward, the first few days in the ward were quite tough to be honest as you get moved about, rolled over etc and it can be uncomfortable. 

The worst for me was meal times as I couldnt sit myself up to eat :( so I used to dread that. Once they get you up and about and you can go to the toilet etc, which is pretty quick to be honest, it gets alot easier.


Are there any complications?

I would advise speaking to your consultant about this as every case is different and these can depend on age/fitness etc.

From what I've read, severe complications seem very rare with this type of surgery as they are done quite frequently believe it or not! 

There is a risk of infection/reaction to anaesthetic like there is with any type of surgery.

With any type of spinal surgery there is also risk of damage to the spinal cord and in the worst case scenario, paralysis, but with scoliosis surgery the risk of this is less than 1% I've been told due to the advanced spinal monitoring equipment they now use.

If you are waiting for scoliosis surgery, you may also find my post on preparing for scoliosis surgery useful. :)

It's Snow Joke...

There are heavy snow warnings across the UK at the moment, below freezing temperatures and lots of ice. We've had a bit of snow where I live although what concerns me more are the slippy pavements - especially when they're not gritted.

I know a lot of people get excited by the snow, it looks so pretty blah blah blah.

I personally HATE the snow and dread winter every year because the cold weather does just not agree with my back. For me it feels dangerous and the cold just causes me extra pain.

Ever since I had the rods put in the cold seems to find it's way into my metalwork and my back muscles just stiffen up like a tight corset, making it difficult to walk very fast and making my pain a lot worse than usual. 

I'm also very nervous about walking on the ice since my surgery as I'm terrified of slipping over and doing damage to my fusion, damaging the metalwork and causing myself more pain. 

I know I'm stronger than I think, but I feel like a frail old lady out there on the ice, people don't realise how bad a fall could be for me though because I'm young and look "normal."


Also, I tend to tense up more when I walk on the ice now as I'm so scared of slipping, which makes it 10x worse!

It was worse last winter as I was only 6 months out of surgery and I knew that I wouldn't be fully fused yet so a bad fall could have caused serious damage.

I think I will be like this now every winter, I just dread it and wish it never snowed. Well, so long as I don't have to go out in it.

I really think I need to live somewhere hot and sunny...or get some of these, safety first!

Ice Grippers:

Memory Foam = Bliss!!

I remember the day I discovered memory foam. 

It was before my scoliosis surgery and I was looking for anything to help with my pain. I bought a memory foam mattress topper and I can honestly say that it was the best thing I ever did. After sleeping on memory foam I remember waking up for the first time without pain and stiffness, it was amazing and in my opinion, well worth the money.

At the time they were about £90 for a single topper but they've come down in price considerably now and are widely available. 

Now I can't sleep comfortably without my memory foam topper, I usually wake up in pain if I go on holiday and have to sleep on a hard bed. I usually can't wait to get back to my own bed and my memory foam! It's like bliss when I lie down on it after a long day.


If you suffer with back pain from scoliosis memory foam is well worth a try, it's really helped me and has truly been a life saver since my surgery.


I am not sure what the best memory foam mattresses are but I bought mine from Dunelm Mill.

There are also many available on Amazon at good prices and
Memory Foam Warehouse have a huge choice of memory foam mattresses and toppers.


There is also a good blog article here on memory foam mattresses and scoliosis.

I know everyone has different preferences when it comes to mattresses and I won't say that memory foam will get rid of all your pain but it has helped me. 

I really just want to share things that help my pain and keep me comfortable with others suffering with the same condition :)




Louise xx

Raising Money for Scoliosis!!

Please help me raise money for the SAUK - The Scoliosis Association! 

Now and again I may recommend products that have helped me deal with my scoliosis in order to help others suffering with the condition.

If you buy any products after clicking on the links/ads in this blog, half of all commissions will be donated to the The Scoliosis Association.

 So if you like the look of any product featured on this blog, please feel free to shop and share with your friends as it's for a fantastic cause! 

Thanks, Louise :)

  

Post Scoliosis Surgery - Back to Work!

Content to follow... my experiences of going back to work following scoliosis surgery.

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.

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.