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 :)

Happy New Year...and thank you!

I just want to say a huge THANK YOU to everyone who has emailed me and messaged me kind words about my blog this year, there's been so many lovely emails and I feel overwhelmed. It is really appreciated and it makes me feel so happy that people are actually reading my blog and it's helping people.

I also want to apologise if there is anyone who has emailed me over the last 12 months and I haven't replied to your message. I try my best to reply to everyone but sometimes emails slip through the net. I have also been very busy this year with completing my MSc and so have had less time than I would like to focus on my blog.

I am just posting to say I'm still here and I plan to blog a lot more in 2016. I will also try my hardest to get back to everyone who emails/tweets/messages me.

2015 has been a year of ups, downs and achievements - the first part of the year saw me completing my dissertation for my MSc in Digital Marketing. I then graduated in July with a distinction and a top performing student award and later in the year I travelled to Australia and toured the East Coast.

In terms of my back, earlier in the year I took part in 10K and 5K races for charity, something  I never thought I'd be able to do following surgery. Unfortunately, I have now injured my shoulder through running and am undergoing physiotherapy - mostly because I threw myself into running without building up my back/shoulder muscles, which are still weak following my surgery.

In 2016, I plan to strengthen my back/shoulder/core muscles and hopefully get back into running as I love it so much!

Anyway, enough from me for now... I just wanted to say a big HAPPY NEW YEAR and see you all in 2016 :-)

Louise xx

5 years post op

Me a few weeks after surgery

So this week it is five whole years since my scoliosis surgery.

My life is very different from this time five years ago and it got me thinking about how far I've come since my surgery. If anyone reading this is currently facing the prospect of scoliosis surgery, or are in the early stages of recovery, I just want to reassure you that it DOES get easier and you WILL be able to achieve things post surgery you never thought were possible. It just takes time and patience.

I continue to push myself, and this week I graduated from University for the second time, with an MSc in Digital Marketing Communications (with distinction), which I have been studying towards for the past three years.

In the few months since finishing my MSc, I have also really got into running and I feel fitter and healthier than ever. In May this year year I completed my first ever 10K race for Cancer Research, in June I completed a 5K fun run (Run or Dye - really fun!) and I've just signed up to complete a 5K run in Manchester in September to raise money for Breast Cancer Care.

I am surprised that running doesn't hurt my back and in the past I have always avoided it for fear of causing myself damage or causing pain. When I first started it did feel a bit strange - but now it feels fine and my fitness has improved immensely over the past few months.

I'm not saying everyone with scoliosis can / should do running (you should always check with your doctor/specialist) BUT I'm saying that having scoliosis should NEVER hold you back, or stop you from trying something, and that you should always feel like you can do anything you put your mind to.

After 5 years, yes I get the odd bad pain day, but on the whole I feel better than ever and my flexibility has also continued to improve, which after surgery I didn't think would be possible.

I don't know how long this will last and whether I'll get more pain in the future but as a result, I am determined to enjoy my life while I can and I will always continue to push myself to achieve for as long as I am physically able to.

Taking part in Run or Dye 5K in June 2015

Here's to the next five years!

Louise xx

International Scoliosis Awareness Day 2015 #ISAD15

Saturday 27th June marks International Scoliosis Awareness Day, so I thought I would share my own scoliosis story to help raise awareness of this (surprisingly!) common condition.

When I was 14, I was diagnosed with scoliosis, a sideways curvature of the spine, after my dad noticed that my shoulders were uneven.  Unfortunately for me though, when my scoliosis was diagnosed, the Drs discovered that I actually had two spinal curvatures (in an 'S' shape) and both curves had already progressed to over 70 degrees, which is considered to be 'severe.'

The one benefit was that, despite their severity, my scoliosis curves were relatively balanced and so were not that noticeable to the untrained eye, which is why I think they were spotted so late in my case.

I was so terrified of the surgery that I endured 10 years of living with two large scoliosis curves, this resulted in considerable back pain and discomfort, severe muscle spasms and breathing problems, not to mention the emotional trauma of living with a very noticeable 'rib hump,' which was caused by my spine pushing on and rotating my ribcage.  As the pain got progressively worse, I was told that my curves were progressing and would likely progress year by year as I got older, which in itself could also result in breathing and heart problems in the future.

Eventually, as a result of increasing pain and discomfort, I got put on the list for surgery and had to wait over a year, before finally having corrective surgery five years ago on the NHS. At the time of surgery my curves had progressed to over 80 degrees.

The surgery was 10 hours and involved my surgeon straightening my spine as much as was safely possible, fusing my spine with bone from my ribs and inserting two titanium rods and a whole lot of screws to hold the correction in place whilst the bone fused. I also had a 'costoplasty' procedure at the same time, which involved the surgeon breaking and removing sections of several of my ribs to improve the appearance of my large "rib hump." This was a painful surgery with a very painful and long, uncomfortable recovery, including 6 months in a back brace, lots of strong painkillers and intensive physio.

My scoliosis - X-Rays before and after surgery

Due to the severity of my scoliosis, my spine will never be 'straight' but my surgeon did an amazing job and I cannot thank him enough - he changed my life for the better. If you were to look at me today, you would never know that I had scoliosis and had been through everything I have, and sometimes, I even forget myself. Now, I rarely get bad back pain and the only giveaway of my condition is the impressively long scar down the centre of my back, which I am incredibly proud of.
 

My back and scar today - 5 years post op!

I'm also proud of how far I've come, as when I was lying in that hospital bed, barely even able to sit up or get out of bed by myself, I never imagined that once recovered I'd continue to travel the word, climb a mountain, run a 10K race, complete an MSc with distinction or walk 26 miles for charity - just some of the things I have achieved post surgery.

Me post surgery

This condition has never held me back and I think going through scoliosis surgery has made me appreciate everything I can do, as well as given me the determination to continuously push myself.

More awareness of this condition is needed because if scoliosis is spotted early enough when the curves are small, it can be treated through physio and bracing and sometimes, surgery can even be avoided.

Photo from Facebook: SHIFT Scoliosis

It's important to realise though that every case of scoliosis and scoliosis surgery is different. Find out more about scoliosis and how you can raise awareness of International Scoliosis Awareness Day here.

Race for Life!

This weekend I did something I thought would never be possible following my scoliosis surgery. I ran 10K (!) through Delamere Forest for Race for Life to raise money for Cancer Research UK. 

I'm not going to lie, the training was hard for me. Especially as I only signed up 5 weeks before the event and so had limited time to train (plus I had never really 'done' running before!).

I always thought running and scoliosis didn't really go together and have always found running difficult. But in 5 weeks I managed to build myself up to complete the race in 1 hr 17 minutes, which I'm so proud of. Now I feel fitter and stronger than ever and hope to improve my running and fitness in time and build up to a quicker time.

After surgery I had to learn how to walk again, so after all I've been through with my back I'm really not bothered about being the fastest. I'm just grateful that I can be IN a race at all.

It just goes to show that even after scoliosis surgery I can do anything I put my mind to and I'm so proud of myself.

Now I'm more determined than ever, if you tell me I can't, I'll prove to you I CAN ;-)

Louise xx

#ShineWalk for Cancer Research

On Saturday 27th September, I walked a full marathon (over night) along with 17,000 others to raise money for Cancer Research UK. Overall it was 26.2 miles and I walked for 10 hours straight from 9pm - 7am!

It was the first time I'd ever done the Shine Walk and it was tough. To be honest I didn't realise how hard it would be, I had been following a training plan and doing lots of long walks for the past 6 weeks and I consider myself relatively fit and active. However, I think as it was at night when my body is used to being asleep, which made it feel much harder and it was a bit of a shock to the system!

Walking for 10 hours straight takes it's toll on your body and after a while the pain started to set in, my legs felt heavy and painful and my feet started to burn with pain. I also nearly collapsed after the event whilst waiting for a taxi due to sheer exhaustion and low blood sugar. The funny thing was though, through it all, my back didn't hurt once!

The cheering, clapping volunteers and passers-by kept us going throughout and without them I'm not sure I could have carried on, not to mention the copious amounts of chocolate, snacks and refreshments en-route!

The pain we went through that night though is nothing compared to those battling cancer and this is what I had to remember as I continued on through the pain, as well as over the next couple of days when I could barely walk!

The whole event raised 5 million pounds for Cancer Research and I'm so proud that I was part of it and proud of myself that I managed to walk for that distance, considering 4 years ago I could barely walk following my scoliosis surgery. It shows how far I have come, and what is possible.

I hope to work myself up to actually running a marathon one day to support the Scoliosis Association and of course I'll always continue to support Cancer Research UK and all their amazing work.

If you fancy sponsoring me for the Shine Walk event you can still do so here: https://www.justgiving.com/LouiseLaurie/ :-)

Bye for now!

Louise x

Happy New Year - 2014!

A bit late now I guess but Happy New Year! 

I wanted to write a bit of an update on me and how my back is doing now I'm 3 1/2 years post op. 

Flexibility wise my back is the best it's been since surgery and bending to pick things up off the floor, rolling over in bed and things like that no longer seem to be an issue for me, which if you'd told me that at around 3 months post op I'd never have believed you! It seems that I can now bend quite normally and I notice my metalwork less and less now despite being fused to L3, which is encouraging. 

The only annoyance for me now is my shoulder, which I still get quite a bit of pain and discomfort in, partly because I have a winged scapula and the shoulder blade is not in the correct place. I'm not sure if this is down to my residual thoracic curve or as a side effect of the surgery or a bit of both. I went to the doctor mid last year about pain in my shoulder and lower back (which is not as bad, only if I'm on my feet alot) and she prescribed me Naproxen and referred me to the physio again. 

I started taking the Naproxen for a while but found it didn't really do anything so, for now, I don't take any painkillers as 1. I don't like taking them and 2. I haven't really found a painkiller that does the job and doesn't have any horrible side effects. 

The physio I saw late last year was quite useful, she basically said the reason I get pain in my back and after I've been to the gym for example, is that as I have the metalwork in there, my muscles have essentially become "lazy" and some of them aren't working as they should as they rely on the metalwork to do the work for them. So if I go to the gym for example, I end up using more muscles than I should do to over compensate for the ones that are being a bit lazy, which gives me more pain and achyness the next day.  I suppose it makes sense and I never thought of it like that. She showed me some simple exercises to do to "activate" some of my muscles again which I found very useful, although I must admit I didn't have the time to do them as religiously as I should have done.

As it was an NHS phsyio, they can only see me for 6 weeks at a time and then discharge me even although I'll never be "cured." I think this time it was worthwhile going though, although no doubt I'll be back again at some point! I think there should be a different system for people with long term conditions, as we need really need long term physio and support rather than continuously having to go back, see a new physio each time and be discharged again.

She did recommend a pilates DVD for people with long term back pain, so my plan now is to try that and see how I get on. It's so hard to know what the best exercises are when you have spinal fusion as you want to keep your muscles strong but you don't want to do damage or make any pain you have any worse.  I wanted to start going to the pilates classes at my gym but I just know I won't be able to do half of the moves and will just end up feeling embarrased.

Anyway, I'll update how I get on with the DVD, hopefully it will be of benefit to me!

Body image

I've recently got back from a lovely holiday in Greece, and it got me thinking about how I felt about my back while I was on holiday.

Ever since I was diagnosed with scoliosis, body image has been a diffcult subject for me. All my body confidence issues seem to magnify by 1000 whenever I go on holiday and my back is on 'display' more. For me, post surgery, dealing with my body image hasnt got any easier. Pre-surgey I thought that all my body image issues would disapper post surgery - I was so wrong. 

I'm aware that my back doesnt look that bad but it's not "normal" and somehow I feel even more concious of it post surgery. I dread wearing a bikini and generally, when I'm on a beach style holiday, I have several 'techniques' to try and hide my back from others:

1. I try and get a sunbed as close to the pool / sea as possible to avoid walking past others when getting in and out of the pool
2. I won't go to the pool bar etc without getting dressed again even if it's really hot
3. I won't go to the swim up bar incase people notice my back while I'm sat having a drink
4. I won't go into the pool without a vest/t-shirt on over my bikini, some days I even avoid going into the pool at all (even if it's hot) as I don't want to walk past people.
5. If I want to get up off my sunlounger, I won't even stand up incase people see my back, so I will try really hard to get my top on over my bikini before standing up.

In addition I get REALLY paranoid about people looking at me, to the point of obsession almost. If people look at me, I assume they are looking at my back and thinking bad things.

So what worried me this holiday, is that these behavioural traits that I've been doing for years pre-surgery, I STILL can't seem to shake 3 years post op. It's really, really difficult for me to be in public in a bikini on holiday. To the point that I'd avoid it at all costs because I find people looking at me and my back too hard to cope with.

I write this post because it highlights that surgery is not a 'quick fix' for all the body confidence issue scoliosis causes. Yes, it improved how I looked, but it did not fix the psychological damage living with the condition for 10 years had already caused. 

It may not be this way for everyone but this is my experience, and it kind of makes me sad that I still feel this way and that it affects what I do or don't do on my holiday.

To try and overcome this, on this holiday I purposely made myself do things I was uncomfortable with - I went into the pool without my vest top over my bikini several times, I sat on the edge of the pool reading (without a vest top over my bikini) AND I went to the pool bar, which were big things for me to do.

However, I have still not managed to walk past people just wearing my bikini. 

I think I'll have to work up to that.

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.