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. :)