2012

So it's nearly the end of another year and it's got me thinking about how good of a year it's been for my back and all the things I've managed to do. At the start of the year I was still doing physio, my back still felt weak and stiff and I was scared of doing things which might cause damage.

As the year progressed, I found myself gaining more strength and more confidence to push myself as I began to realise that I'm stronger and can do more than I first thought.  

My scoliosis surgery gave me a new zest for life and one of my resolutions last year was to try new things and get as much as I can out of life, despite my back condition.

This year I have climbed mount Snowdon in Wales, which was very difficult and a huge personal challenge for me, travelled to Marrakech, Turkey and Denmark, bought my first car, taken up Zumba (which I never thought I'd be able to do post surgery) completed a web design course and started a Masters degree in digital marketing communications whilst working full time, which keeps me very busy! 2012 was also the year I was given the all clear by my surgeon that finally, after over 10 years of annual scoliosis checkups, I now no longer need to go back to the hospital for X-rays each year.

My back has also never felt stronger, although I still get the odd pain days, I don't take painkillers as frequently anymore and I can now bend and pick things up more easily, although my grabber still comes in handy especially when tidying things off the floor. I also still believe, even though it's been two years since my surgery, that there is still a way to go and it will continue to improve over the coming months. 

The important thing is a couple of years ago my back condition consumed me, now I rarely think about it and get on with my life - and for that I am thankful.

I hope that in 2013 I can continue to push myself, aim high and not let my scoliosis hold me back, so to speak ;)

Happy new year!

Louise x

Image by pepemczolz via Flickr

Inspirational Scoliosis Quotes

When I was recovering from surgery, reading inspirational quotes helped me to stay positive.

Here are a collection of some of my favourites that I think relate well to scoliosis, scoliosis surgery and recovery:


Recovery / Strength

You can't see the view if you don't climb the mountain.

You never know how strong you are, until being strong is the only choice you have.

Courage isn't having the strength to go on - it is going on when you don't have strength. Napoleon Bonaparte

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.

Life consists not in holding good cards, but in playing those cards you hold well

Where there is no struggle, there is no strength - Oprah Winfrey

No matter how hard things may seem, don't get down, and don't give up. The clouds will clear, and there are brighter days ahead.

It doesn't matter how many times you get knocked down, but how many times you get up - Vince Lombardi

The way I see it, if you want a rainbow, you gotta put up with the rain - Dolly Parton

Don't confuse your path with your destination. Just because it's stormy now, doesn't mean you aren't headed for sunshine - Unknown.

Everything will be ok in the end. If it's not ok, it's not the end.

Pain

Behind every beautiful thing, there's some kind of pain. Bob Dylan

In the end, some of your greatest pains become your greatest strengths. Drew Barrymore 

Pain is weakness leaving the body. Tera Lynn Childs 

We must embrace pain and burn it as fuel for our journey. Kenji Miyazawa 

Pretending to be happy when you're in pain is just an example of how strong you are as a person 

The pain of yesterday is the strength of today

Scars

Scars show us where we have been, they do not dictate where we are going. David Rossi

Never be ashamed of a scar. It simply means you were stronger than whatever tried to hurt you. 

Please feel free to comment and add your own! :)

Louise x

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).

Richard III: Lost King had Scoliosis

Just came across this story and thought it was interesting:

http://www.bbc.co.uk/news/uk-england-leicestershire-19561018 

 

Pain days

I don't like to post about pain too much as I don't want to put people off having this surgery, as I know that in many severe cases like mine, surgery is unavoidable.

However, this is an honest blog about life after scoliosis surgery and if you need to have this surgery you will be interested in what it's really like living your life after this type of surgery.

Today has been a bad pain day. Actually the past few days have.

Honestly, I don't get as many pain days now as I used to, in fact, I can now go months without taking my painkillers. Considering how many painkillers I took in the year following my surgery, I think this is incredible.

I believe alot of this is down to my exercising and keeping my core as strong as possible as I've worked really hard to get my strength back since surgery.

My pain days generally don't stop me from doing anything. I just keep calm, take a codeine and carry on!  But these pain days do make me stop and remember that I have had major surgery on my spine, it's so easy to forget sometimes.

I've been trying to work out recently what causes my pain days. Am I doing too much by going to the gym frequently and working full time? Should I rest more? I just don't know.  These are the questions I will ask my consultant when I see him next month.

I think though, that I've worked out a few 'triggers' of my post-surgery pain over the past few months:

• Stress I've been under alot of stress over the past couple of weeks and I think this is causing my back pain to flare up now. Maybe it's the muscles tensing up I don't know but it seems to be worse when I get stressed.

• Cold Weather Now the summer has come to an end (I know, I know, what summer right?) I can feel the cold working my way into my back and making it tense up more.
• Uncomfortable chairs I still need to get myself a decent cushion!! But most chairs are uncomfortable and will cause my back pain to flare up if I sit on them too long.
• Time of the month (ladies!) for some reason my back pain gets alot worse during this time, which is odd as this never happened before surgery!
• Being on my feet too long although I know this is also a problem for people who don't even have a back condition and it's usually relieved once I sit/lie down.

I would be interested to hear from other people who have had the surgery, what do you think causes your pain and how do you tend to cope?

Zumba!

Alot of people think that after scoliosis surgery, you are unable to do alot of things that you used to do. I not only do the things I used to do, I am enjoying trying new things too!

I've recently started going to Zumba classes, I've never done Zumba before but it's alot of fun! I wasn't sure if I would be able to do Zumba after scoliosis surgery as it involves alot of jumping around and using your back and hips. 

Before surgery, I used to do aerobics quite regularly but it's only really very recently that I've felt like I'm able to do this kind of activity again, and I'm now 2 years post op. 

I have really missed doing aerobics for the past couple of years and was a bit anxious about getting back into it again as it's been so long and I was worried if I'd be able to do it - at many points during recovery I thought I'd never do it again!

I've really enjoyed the Zumba classes though. Yes, there are certain moves I can't do that involve bending the back, but I just do my own adapted version of the moves. It's still fun exercise!

I'm just eternally grateful that, after 2 years, I'm able to do these kind of activities again and I'll never take anything for granted again.

 

My Scoliosis Scar: Two Years Post op

My scoliosis scar: two years post op

Above is a photo of the top of my scoliosis scar now, at two years post op. I don't think it's very noticeable now at all, especially as my hair usually covers the top of it.

Just for comparison here is a pic of the top of my scar at about 7 weeks post op, so you can see how much it has faded!

My scoliosis scar: 7 weeks post op

Usain Bolt has Scoliosis!

I read the other day that Usain Bolt, the "fastest man in the world" has scoliosis. 

I'm not sure how bad his scoliosis is but I myself found it very inspiring that the fastest man in the world has the same condition as me as he has obviously not let his back stop him from achieving his dreams.

I found an interview with Bolt here where he discusses the importance of keeping his core and back strong, something I have been working on alot myself recently. 

I don't think I'll be sprinting anytime soon but it just goes to show that anything is possible and makes me more determined than ever to train hard at the gym and achieve everything I want to, despite my scoliosis.

2 years post op!

I can't believe it but today I am 2 years post op! I can't believe it was a whole two years ago today that I had my scoliosis surgery.

I thought I'd do a quick update on how I'm feeling now in myself and how my back is. 

I'd say at 2 years post op I'm pretty much back to normal, I work full time and I go to the gym 3-4 times a week. 

I still get bad pain days from time to time but I don't take painkillers everyday now and I'm just really thankful for everything I can do. 

Everytime I go to the gym, drive my car, go shopping, even getting out of bed by myself (things I used to take for granted) I really appreciate that I can do them. 

I think this surgey has made me look at my life in a different way and just be thankful for every thing I can do and thankful for life in general. I think it's only when these things are taken away or made difficult after this kind of surgery, that you realise how much you really rely on using your back in every day life. People really do take it for granted. Everytime I do something new that I havent done since surgery I feel so happy that I'm able to do it.

It's a long, slow recovery and it's only very recently that I've been able to do things like lie on my side in bed comfortably but I got there eventually! 

I also still feel stiff sometimes, I dont know if this will ever go but I'm kind of used to it now. If I had the option, I still wouldn't change my back for a "normal" one without the rods, as in a way I quite enjoy being unique and the rods make my back feel strong and supported. 

I don't think my back will ever feel 100% normal, but who knows it might improve even further in 6 months time!

I don't have my 2 year post op appointment until October (the hospital forgot about me!!) so I just prey everything is ok with the fusion and metalwork until then.

I'd say to people early on in their recovery - you still have a long way to go but eventually you do start getting back to "normal" and getting on with and enjoying your life again.

Louise x

Scoliosis Awareness Month

Does scoliosis surgery get rid of pain?

I get asked this alot and the answer, for me, is yes and no.

People don't seem to understand why I am still in pain after I've had the surgery, I think they think that as my surgery was nearly two years ago now that I should be 'recovered' and back to normal now - whatever that is.

The truth is that before my surgery my pain was much, much worse and I was soooo much more uncomfortable.

I had two curves 80+ and all the pressure these put on my muscles gave me terrible muscle spasms/knots. Nothing would get rid of them, I had massages every few weeks, tried accupuncture, physio, heat therapy, pilates, swimming etc etc. It just felt like a constant intense pressure - kind of like my spine was about to snap. I also found it hard to sit unsupported e.g like a bench/stool as I'd get pain/pins and needles in my back. Plus I was always so uncomfortable on pretty much EVERY chair going due to my rib hump.

As soon as I woke up from surgery I knew straight away that the pain I had before surgery was completely gone, and I can't begin to tell you what a relief that was after years and years of it. My muscle knots went overnight.

My back felt supported for the first time, like I had an internal brace and I could sit unsupported comfortably for the first time, it was so amazing.

I was told by my surgeon that this surgery is not guaranteed to get rid of pain and that I could end up with a different type of pain post surgery and he was right. I didn't have the surgery to get rid of my pain but to stop further progression of my curves so this didn't really bother me.

The pain I get now post surgery is mostly lower back pain that I get after a long day at work/being on my feet for a while and is relieved instantly by lying down. 

I guess this is due to pressure on the unfused discs in my spine as they have to take the pressure that my whole spine used to take now that it's fused. I'm currently trying to strengthen my core muscles at the gym to try and take the pressure off and I have noticed a difference since starting my exercising I must say.

The main problem I have now is trouble getting comfortable. I'm constantly uncomfortable and I think this is because of the rods in my back my posture is constantly 'straight' so I cannot bend my back to mould it to chairs such as sofas as others would do. 

If I'm sat straight upright I'm usually comfortable but the problem is that most chairs don't allow you to sit straight very easily so I'm always hogging all the cushions in the house in a desperate bid to get myself sat in a 'straight' position!

So if anyone knows any good cushions that may help with support for my back please let me know...

1 year 8 months post op - You can't see the view if you don't climb the mountain...

In the early stages of my recovery from scoliosis surgery, this was one of my favourite quotes. It was a quote that really helped me get through the really tough days as it made me realise that one day, I would look back and realise how far I'd come and how strong I was.

Well this weekend I actually climbed a mountain, Mount Snowdon that is, the highest mountain in Wales at 3560 ft above sea level!

I went with some people from work and at first I wasn't sure if I should go, because of my back as I thought it would be too hard for me but thought it would be a good challenge and didn't want to let me back stop me.

When we got there I realised it wouldn't be easy as there were huuge rocks to clamber over, massive steps, rough terrain and very steep climbs. It wasn't a walk in the park!

When we got about half way up there were also bits I actually had to physically scramble up by using my hands - which is not easy when you can't bend but amazingly I managed and I got ALL THE WAY TO THE TOP!!! 

There were some members of our group that didn't even make it up so I was really proud of myself and happy that I managed it. 

It felt like such a huge achievement to climb a mountain after all I've been through with my back and it's proof at how far you can come after this surgery if you really put your mind to it. 

 

 I've been going to the gym alot and I found the climb relatively easy fitness wise, which I'm also really proud of.  

 The only thing I didn't like was that the rocks were really slippy, there were some very steep drops and loose rocks and I was soo scared of slipping - this was much worse coming down. 

There is a train that goes up and down and I think if I did it again I'd get the train down as I think it's too dangerous walking/climbing down.

 My back started hurting as I reached the summit but felt ok after a well deserved sit down in the cafe at the top! Bearing in mind we'd been walking/climbing 3 hours uphill and 3 hours down I think my back coped pretty well overall.

Now im in pain from doing it but amazingly it's not my back but my legs that are killing me today! 

It just goes to show that if you keep going and stay positive, even if it doesn't feel like it in the early stages of recovery, there's a wonderful view from the top! (As long as it's not foggy...)

Me up the mountain

A Sad Post...

This weekend I received some very sad and shocking news. 

I'm a member of a scoliosis support group and I found out that one of the staff members Vicki, who was a truly inspirational person and good friend to many on the site, sadly passed away aged just 28.

This was a huge shock to all members of the site including myself and I'm very upset by this devastating news. I can't get over the unfairness of it all :(

I believe Vicki was born with very severe scoliosis, and had spine surgeries very early aged just 5 and 10. Because of the severity of her curve she was left with a very large curvature after surgery. This, and the fact that she had scoliosis from birth, meant that her lungs were unable to develop properly while she was growing and so her lung function was very low. 

Unfortunately this made her very vulnerable to severe chest infections and I believe it was pneumonia that was the tragic cause of her death :(

It's a horrible reminder of what can happen in very severe cases and that we need more awareness raising for this condition.

A Just Giving page has been set-up in Vicki's memory to raise funds for the Scoliosis Association http://www.justgiving.com/4vicki . 

If you can, please help to support the cause and spread the word in Vicki's memory. 

RIP Vicki, you won't be forgotten.

xxx

NB: Scoliosis surgery research and techniques are advancing all the time and children born with severe scoliosis today can be treated using alternative techniques such as growth rods which allow the child's spine to continue to grow without the curve worsening.

Holiday - 1 year 7 months post op

I've just got back from my birthday holiday in Marrakech and thought I would update how it was for my back. 

Holidays are always difficult for people with bad backs, lugging cases about, airport queues, hours on your feet, uncomfortable aeroplane seats, hard hotel beds.. the list goes on!

However, this holiday it actually wasn't so bad.

Last summer when I was around the one year post op mark I went to Cyprus for two weeks and I found it incredibly difficult. Especially getting on and off low sunbeds and I found it hard keeping up with my family during evening walks when I would get a tight 'pulling' feeling in my back if I walked too fast.

This holiday I only realised that I had improved when my boyfriend pointed out how different I was to when we were in Cyprus last year. After he made the comment, I realised he was right. I found myself easily getting on and off the hotel sunbeds plus I did a few long days of excursions walking round all day and it was no problem at all. I had no problem spending all day on my feet and keeping up with everyone else on the excursions.

I didnt even realise all this to begin with, I was just doing it without thinking. I even had no painkillers all week! I think the heat helped with this though - I need to move somewhere hot..

The point I'm making really is that at a year post op I was thinking that that was it and that it was as good as I would ever be after this surgery. 

I know now that this is not the case, although it's impossible and frustrating not to know that at the time. If you reading this and are at this stage around one year post op please remember you will still be improving and you won't even realise it until you look back a good few months later and see how much easier things are still getting.

I had a wonderful holiday and did all the things I never imagined doing again (comfortably!) last summer.

Nothing is impossible and I still look forward to seeing what else I can do as each month passes by! 
Louise x

Psychological aspects of Scoliosis Surgery

Ever since my surgery I have been paranoid that my back will go back to how it was before my operation or that it will move/change in some way. I know the metalwork is strong but I can't help worrying about it.

For the first few weeks that I was home after my surgery I was constantly taking pictures of my back from different angles and I would panic if I thought that it looked slightly different from the one I took a few days before. It almost became an obsession.

Even now I still look at my back constantly, if I pass a mirror or a window I look at my back to make sure it still looks how it should do. I still take photos of my back to compare to a few months ago albeit it not as frequently now.

I do wonder if this is something that will ever go away or will I always feel this way? If so I feel like I'm living on edge, constantly worrying/thinking about my back.

My mum sees me looking at my back a lot and tells me to stop and "move on" with my life but it is hard. I think 10 years of looking a certain way which then suddenly changes overnight is a lot to deal with. I've been so used to looking at/taking photos of my back constantly before surgery that I guess old habits are hard to break.

I truly believe that the psychological part of this condition is often overlooked by doctors and yet for me it's a part I feel I suffer with the most, even after surgery.

For me, my back looks alot better than before but I don't feel I look "normal." I still don't feel comfortable in certain clothes, I still feel very self concious most of the time and I still don't like anyone seeing/touching my back.

I didn't expect to feel this way after surgery and have received no guidance on how to deal with it. I don't know if others feel this way after scoliosis surgery but for me this recovery is not just physical, it's emotional aswell.

I don't know if I should go to my GP and explain how I feel or whether this is just normal after such a huge change to my body. 

Hopefully I won't feel this way forever and will be able to have just one day without even thinking about my back.

Weekend Away

This weekend I went away to York for a few days.It reminded me that I still find travelling/weekend's away a bit of a pain, here's why:

-Train Journeys - luckily I wasn't alone but I don't think I could travel on my own with a suitcase on a train. Trains are annoying at the best of times, I could rant all day about them to be honest. 

I have to reserve a seat really as I can't stand for an entire train journey. The annoying thing about this though is that if I can't reserve a seat for some reason then because I look young/"normal" I feel as though people are judging me for sitting down say, for example, if someone older is standing nearby.

I also can't carry my case and it's virtually impossible to get through a train journey from start to finish without having to carry your case at some point, even if you have a roller case like I do. There are generally lots of stairs (why do sooo many train stations have so many stairs?!) and when you get on the train there's usually a pile of cases already in the luggage area so then you have to either struggle to lift to put it on the pile of cases or stuggle with your case through the train aisle to get to your seat, which are not wide enough to wheel your case through.

Then when you get to your seat if there's nowhere to put it next to you, you have to lift it to get it onto the overhead lugguage rack, which I can't really do.

After all this my back is generally killing and I can't wait to sit down but then the train seats aren't exactly the most comfortable and I have the usual problem that my back can't bend and mould to the seat so it's usually an uncomfortable journey.

-Walking - weekends away in a city generally involve being on your feet all day and this weekend was no exception! Although my back was a lot better than the last weekend away I had late last year and the lower back pain wasn't as bad but a long day walking round in the freezing cold (there was ALOT of snow in York and it was minus 7 at one point!!) does take its toll believe me. 

Plus I was scared of slipping as there was snow/ice all over the pavements.

I took some heels with me to wear out on the Saturday night but when it came to Saturday night it was sooo cold and slippy outside and I would have had to walk quite a bit between places and to the taxi rank that I just stayed in my flat 'snow boots.' 

I felt a bit too casual but I didn't want to slip and I knew walking round in heels would be uncomfortable aswell so that was a bit of a shame - this is why I hate the snow!!! Most girls in out that night didn't seem to care though in their skyscraper heels.... sigh.

-Taxis- We got alot of taxis because we didnt know our way round plus our hotel was just outside the city centre. This part isn't specific to weekends away but I realised this weekend that I CANNOT get in and out of those larger taxis with the slider doors. I can't bend to get in and out so it's really awkward  and because of this I managed to bang my head a couple of times in the process of trying to get in - ouch! :-(

-Hotel beds - The hotel bed was really hard, which made me appreciate how much I love my memory foam topper at home! I woke up stiff and in pain every morning and then had to walk round all day and attempt to awkwardly get in and out of taxis...

Don't get me wrong I had a really fun weekend away and I'm happy that I can do all these things but going away on the train is still not the easiest. It's not much of a problem if I'm with someone who can help with my case or not mind sitting down with me throughout the day while I rest my back. 

It's annoying sometimes as I might want to visit friends who live in another part of the country for the weekend but it would be quite difficult for me to do by myself if I had to go on the train.

Hopefully the more I do it though, the easier it will get in time.

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:

A Momentous Occasion...1 year 6 months post op

Last night I got into bed but then I realised I needed to turn the light off, so I sat up. 

Then I realised. I can sit up! I can actually sit straight up from lying down!! Without even thinking about it!!

This may not sound like much but for me this is a big deal.

I'm now 1 year 6 months post op and it's only really over the past couple of months or so that I'm starting to notice improvements like this. 

I'd say I've pretty much felt the same between the 1 year post op mark and 1 year 5 months or so and I was worried that I wouldn't improve much more.  That this would be it now. The best I'd ever get.

This to me though is proof that I am still improving. Proof how long this recovery actually is.

I can't help but think that all my hard work at the gym is also paying off. For the past few months I've been working really hard, going 3 times a week and focussing on core muscle work.

Last week my fitness instructor asked me to do the "Plank," which is basically lying face down on a mat, resting on your forearms and pushing off the floor so you're resting on your toes and elbows only. 

I was a bit reluctant at first as I haven't really done any exercises on the floor since surgery and I was worried about hurting my back. It was awkward getting down that low and getting back up but he was impressed with how long I could hold the exercise, he said I can hold it longer than most people he sees so my core exercises must be working! 

I'm now doing this exercise when I go to the gym, but resting on a pilates ball rather than the floor so I don't need to get down that low.

I have really noticed that my lower back pain has improved since I started all these core exercises and I'm so happy that I can now do things like sitting up in bed, like I used to before surgery, without log rolling out.

Honestly, I thought I would never do this again. I thought that maybe the rods restricted me from being able to sit up without rolling on my side but it must be weak muscles and now I'm regaining strength in my back muscles things like this are getting so much easier.

Yes, it's always in the back of my mind that what if I'm doing damage to my back/fusion/metal going to the gym all the time? This thought sometimes takes over and I'm scared to try new things but I'm getting to the point slowly where I'm realising that my back is stronger than I think.

I actually feel like I'm getting my old life back, after all this time.

Woohoo!!!

Half Woman, Half Robot

So what it is really like living with titanium in your spine? Can you feel it? Does it restrict you in any way? I know I asked myself these very questions prior to my scoliosis surgery.

I am fused with two titanium rods and 21 screws and from T3 to L3, which is most of my spine:

My back

The screws are also pretty big, as you can see from my X-ray above! So can I feel them? Yes and no. 

As I am quite slim I can feel my screws in some parts of my back if I actually touch my back but they don't cause any pain or probems. If I lean back on a hard chair it can be quite uncomfortable - some of the screws at the top of my spine can dig into certain chairs, but again it's not painful just a bit uncomfortable sometimes depending on the chair. A cushion is a must!

In everyday life though when I'm walking about I can't actually feel the metal in my spine. Straight after surgery I was very stiff and walked a bit like a robot for a while but as my recovery goes on I'm starting to feel much more "normal" each month. Maybe I'm just getting used to it but it is at last starting to feel normal for me.

I only notice it now really if I bend down to pick something up or I'm in a situation where I would usually bend my back e.g. when getting dressed, shaving my legs, tying shoelaces, getting in and out of the car etc as I can't bend the fused part of my back at all. This is sometimes awkward but on the plus side I now have thighs of steel as I have to bend by bending my legs instead. I can still do all the above things, it just takes me a bit longer now :)

If you had a shorter fusion you would probably notice this lack of flexibility much less as you mainly use the five lumbar vertebrae (L1-L5) when bending. The more of these lumbar vertebrae fused, the more your flexibilty will be affected post surgery.

A benefit of having titanium rods in my spine though is that I feel like I have an internal brace and I personally love this feeling! 

I feel supported from the inside and I can now sit for hours unsupported (e.g. on a bench or stool) and feel really comfortable, which I could never do before surgery. 

Also, because you can only sit up "straight" it gives you fantastic posture without even trying, which is a huge plus. For me, I think this is a novelty that will never wear off, especially after years of looking like I had bad posture due to my scoliosis.

I'll try and show you an example of this - the below picture is me sitting up "straight" before surgery, it looks like I'm slouching due to my "rib hump":

Posture before scoliosis surgery

I know this one is taken from a different angle but this is me now sitting on a chair sitting normally or "slouching" from the same side:

Posture sitting after scoliosis surgery

I now don't really need to lean back as the metal supports me and in fact it's actually comfier not to as my back won't bend and mould to the chair.

If you have any questions about the metal work, please contact me and I'll do my best to help! 

Louise xx

Costoplasty Questions

I've been asked a few times about the costoplasty procedure I had at the time of my scoliosis surgery, so I thought I would try and answer a few common queries about costoplasties below:

What is a costoplasty?

When the spine curves it can also twist, this causes rotation of the rib cage which results in a "rib hump," this mainly occurs with thoracic curves that affect the ribs. In my case I had a large thoracic curve and a very prominent "rib hump" on my right side, caused by the rotation of the spine. Some scoliosis curves can be large with very little rotation and some can be small with lots of rotation, every case is different.

A costoplasty, sometimes called thoracoplasty, is a separate procodure to the spinal fusion, which can reduce the appearance of the "rib hump" that is most often associated with thoracic curves. 


A costoplasty will usually involve the removal of sections of several ribs that protrude - in my case my surgeon removed four sections of rib - ouch!! The idea is that when the ribs grow back, they will grow back straight, providing you with a flatter back.
This procedure can be carried out during the same time as the scoliosis surgery, or sometimes as a separate procedure after the spine has fused.  

Note that you can't have a costoplasty without first having the spinal fusion to stabalise the spine.


Does everyone undergoing scoliosis surgery require a costoplasty?

No. Not everyone with scoliosis will require a costoplasty, it's generally considered a "cosmetic" procedure and in many cases, especially with the modern instrumentation used nowadays, the surgeon can achieve a fantastic cosmetic outcome without the need for this additional procedure. Also, depending on where the curve is in the spine, the ribs may not be affected and therefore this procudure would not be required.

Are you pleased with the results? 
Yes. Personally, I had alot of rotation, my rib hump was very large and I hated it. It made me self-concious and it was painful and uncomfortable to sit against chairs, this is why I decided to ask my surgeon about the costoplasty.


On reflection I am pleased I had this procedure and I would have it again tomorrow if I had to as the results were so fantastic. My rib hump has disappeared and I still can't get over how flat it looks even now.

Is having a costoplasty painful?

Yes it WAS painful, but that's not much of a surprise really bearing in mind I had 4 broken ribs!  It hurt to breathe, sneeze, laugh, move!!

I would say the costoplasty pain was worse than the pain from my spine and lasted about 6 months. But for me the pain was all worth it and was controlled well with painkillers :-)


Are there additional risks to having a costoplasty?

Yes, as with any surgical procedure there are risks and complications that can occur with a costoplasty and you should always discuss all the options and risks with your surgeon before making a decision.

Hope this helps please feel free to ask any further questions you may have about this procedure and I'll do my best to help :-)


Louise x

Haircuts post scoliosis surgery: A pain in the neck (literally!)

So I had my hair done this weekend and it reminded me that having my hair cut is one thing that I absoltuely hate doing post scoliosis surgery, that and shaving my legs. I try to put it off for as long as possible but some things are just unavoidable.

The problem is that going to the hairdressers is now a completely different experience from pre-surgery, and not an enjoyable one at that. This is mainly because I can't bend my back to slouch into the hairdresser's chair so I end up perching on the end of the chair sitting straight up or leaning back with my shoulder's touching the top of the chair and a huge gap between my lower back and the back of the chair! It's safe to say that sitting this way for a fair few hours is no fun.

The worst part is leaning back to have my hair washed, it's sooo uncomfortable as I can't mould my back to the chair and end up again with the huge gap between my lower back and the back of the chair. I used to enjoy having my hair washed at the hairdressers but now I just want them to hurry up and get on with it so I can get out of that horrible seat. 

It's probably my own fault for having foils that take hours but hey beauty is pain and I may have a sore back after visiting the hairdressers post surgery but at least my hair looks good! ;-)

Next time I'll take a cushion...

Another Amazing Scoliosis Surgery Story

I came across another amazing scoliosis surgery story on Twitter over the weekend about a girl with pre surgery scoliosis of 180 degrees, click here to have a read.

Truly inspirational!

Happy New Year!

So it's an end of another year and a chance to reflect on the past 12 months.

This time last year I was still signed off work following my scoliosis surgery, on alot of painkillers and wondering if my life would ever be normal again. Last New Years Eve I stayed in because I couldn't face the large crowds, the pain, the possibility of there being nowhere to sit and not being able to have a drink on my painkillers.

This New Year was very different. I went out with friends and partied until 3am!

Over the past 12 months I've come a long way and started getting back into my old life... slowly but surely.

Here's a list of some of the things I've achieved in 2011:

• Started back at work - part time for the first few months
• Enjoyed (many!) drunken nights out with friends (in my heels!)
• Danced again for the first time since surgery
• Went to concerts and the theatre
• Holidayed to Cyprus
• Finished a Diploma in Digital Marketing
• Started back at the gym 3 times a week
• Progressed well with physio - I can tell my back feels stronger as now I'm able to lift myself up from lying down much easier.
• Visited London a couple of times, sounds easy enough but involved long train journeys with no seats, lots of walking and the busy underground so was proud of myself!!
• Had my one year post op appointment and had all restrictions lifted
• Got a new full time job in online marketing.
• Took a trip to Berlin (which involved ALOT of walking and the U Bahn!)

So, yes it's been tough at times, but I've done far more than I ever imagined would be possible this time last year, and I hope to continue this in 2012.

This year I want to get fitter and stronger, learn more, travel more and keep pushing myself to achieve. I believe anything is possible.

“Don’t let what you cannot do interfere with what you can do.” ~ John Wooden

Happy New Year!

Louise xx