Tuesday, 10 April 2012

Scoliosis – My Story

This is going to be a completely different post to anything I have ever written before on my blog.  It’s going to be a very personal story that not many know about me, but I want to tell in case there are any other people going through what I once went through, in hope that this might answer some questions for them or might help them through major spine surgery or a tough time.

When I was 11 I was diagnosed with scoliosis.  Scoliosis is actually quite a common medical condition, which basically means that you have a curvature of the spine.  Mine was congenital scoliosis which means that I was born with the *deformity*, although my parents and I were completely unaware of the fact that it was scoliosis until I was 11.  I was at my weekly dance classes and we were doing a ballet exercise where my teacher placed a full glass of water on your back when you were bent over, to make sure that you could achieve a flat back.  My teacher noticed a bump and couldn’t place the glass on my back and so she told my parents – who too had noticed the bump a few times over the years but didn’t realise it was serious.

At my first X-Ray they discovered that my spine had a 32 degree curve… pretty scary!  I was only 4’6’’ at the time, so I was really small and so the curve of my spine was the reason I was (and still am) so tiny.  With months of more X-rays, MRI scans, cardiac-echo tests and kidney ultrasounds we learnt that thankfully nothing else was wrong with me but we learnt that the curve was progressing and getting worse.

My back before the operation – You can see one shoulder is a lot lower than the other (left) and when bent over I had a noticeable lump on one side of my back (right).
scolio1 

The X-Rays of my spine before my operation. Standing straight (left), and bending to the side (right).
SCOLIOSIS 1 

The Operation - I was booked in to the Portland Hospital the following Easter (I was 12 years old by this point) to have the Major Spine Surgery to straighten my spine.  My actual scoliosis came from the result of having a hemivertebra at T11 (thoraco-lumbar).  This means that one of my vertebra hadn’t fully formed (half a vertebra in the shape of a wedge instead of a square) which also means that I am missing a rib!!! 

By the time my operation came my spine had a 45 degree curve – which meant that the curvature was progressing really quickly – if I hadn’t have had this operation I would have a hunchback now.  There is a risk with the operation that you could be left completely paralysed from the waist down, if your spine or nervous system gets damaged.  It was a big decision, but my parents and I decided to go ahead with the operation.

Gory Details - During the operation I had both anterior and posterior surgery (an incision down my back and another on my side).  I had a titanium rod placed on my spine, which is held in place with large bolts – one to the vertebra above and one below the hermivertebra.  I then had a section of my ‘extra’ rib removed and used as grafting material so that all three of the vertebra were fused together.  The surgery was about 4 hours.

After the Operation
Trying to play gameboy an hour after the op, ha! (left) Asleep (right)
scolio2

When my parents first saw me after the op I looked chirpy (haha!) but my face was swollen.  I had antibiotics and saline drip neck lines, a morphine drip in my left hand (& a stand-by needle in my right), a chest drain, catheter, pulse and blood pressure monitors etc, a gastric-nasal tube and oxygen tubes and face mask.  I was on 2.5mg of morphine an hour (which was dispensed very slowly via a remote pump) – and I only lost about half a pint of blood in the op and didn’t need a transfusion.

I was in intensive care for almost a week after the operation and I couldn’t move at all – I had nurses who would turn me over during the night if I became uncomfortable.  Over the days the tubes slowly came out one by one and I had my back brace plaster cast fitted (apparently this was the first time I cried after my operation, as turning me back and forth hurt). 

After that week I was moved back to my own bedroom in the hospital (wearing my back brace).  I had to learn to walk again and underwent physio (I remember carrying bags of sugar up and down some stairs, ha!).  I had a 6 inch cut down the centre of my spine and a 7 inch cut down my side which were starting to heal.  I was very dizzy though and couldn’t do much for very long (which was devastating for me because I had been bought the new Spyro playstation game which I desperately wanted to play but couldn’t because it made me feel nauseous). 

Me in hospital wearing my back brace (I chose to have a pink gingham pattern!) (left) and my scars after the operation (right)
scolio3 

My X-Rays after the operation.  I will have the titanium bolts in my spine for my whole life! 
SCOLIOSIS2 

At home – My dad had to make me a bed downstairs as I couldn’t sleep on the top bunk in my bedroom.  I had a month off of school but had to wear my back brace for 3 months.  I remember my back brace very well – I hated wearing it as my scars were itchy and I obviously couldn’t scratch them (although my sister and I devised a ‘straw up the vest system’ which meant I got to itch slightly, haha!). 

I returned to the hospital 10 days after the operation to have my stitches removed.  At my 6 week check up with my surgeon we found out that my curve had gone down to 20 degrees – an amazing result!

Now –
My back & scars now -
1 

I am all well now - I am SO happy I had the operation. If I hadn’t I would have a proper hunchback now and would probably be even shorter than I am. !  I have two pretty impressive scars on my back (and a smaller one where my chest drain was inserted) but they have faded dramatically and are hardly visible.  I get the occasional back ache but I now have no physiotherapy.  I will have the bolts in my spine for the rest of my life and I will not grow any more, obviously. 

I am only 4’11’’ – I grew about 5 inches after the operation but then stopped.  This is the part of the whole thing which is hardest for me.  I know that good things come in small packages, whatever, but I really do hate being this little.  From behind I must look like an 11 year old girl.  When I work as an actor in schools, most of the children in year 7 are taller than me.  I feel like I get judged a lot by others because of my height.  I get ID’d almost everywhere I go and some people generally talk down to me because they think I’m younger than I am.  If I was 5 foot I would be so happy, but alas, that’ll never happen. 

I get a little self conscious now and then when going swimming but that doesn’t stop me from wearing a bikini.  It’s also a little awkward when dating new people (if we get to that point in the relationship) but I normally just make a joke of it (oh yeah, did I tell you I got attacked by an alligator when travelling in Australia one time?).

As I said earlier, Scoliosis is REALLY common and many people have it without even realising.  I’ve put together a list of symptoms that are common with people with scoliosis
- one shoulder being higher than the other
- one shoulder blade being higher and more prominent than the other
- one hip being more prominent than the other
- back pain with nearby muscles feeling sore and tender
- Leaning of the body to one side

If you have scoliosis and would like a chat – or are considering having the operation and want some advice then please don’t hesitate to leave me a comment or send me an email.  I’ve been through it all and have come out strong and healthy in the end (my spine is now actually stronger than most people – I am bionic woman!).

Do you know anyone with scoliosis or have ever had any major spine surgery?

xxxx

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148 comments:

  1. aww its personal but so brave. You are absolutely beautiful, and hey only an inch shorter than Kylie - all the best things come in little packages :)

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    1. Haha, I'm obsessed with celebs that are the same height as me - makes me feel better about myself, haha! Thank you xxx

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  2. Katie, this post is incredibly brave for you to have written! A family friend of mine underwent a similar operation a few years back and I saw her around school looking uncomfortable in her back brace. Your scars are barely noticable, and hey - who doesn't want to be bionic?! x

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    1. Thank you so much! Haha, I must admit I like the thought of being bionic! Back braces are such a pain - I was allowed to have it off for an hour a day which felt like heaven! I hope your family friend is better now! xx

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  3. you are very brave and I admire you for sharing this with us all!
    xx

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  4. What a wonderful post, it looked like such an ordeal and you were totally brave being only 12 and having such major surgery! You're an absolute inspiration to others with a similar condition. I know you're consciOus of your scars but honestly if you hadn't ringed them and I was unaware you had had back surgery I wouldn't have noticed. You look fab, such a brave post!

    Dp
    X

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    1. Thank you so much - that means alot! I didn't feel brave at the time but looking back, it made me stronger and who I am today! *cringe*, ha! xxx

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  5. Just read this from start to finish - well done for posting! I'd heard of scoliosis before reading but knew nothing about it at all.

    Good things do indeed come in small packages & well done for getting through it all :)

    xxx

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    1. I was worried when I wrote it that no one would actually read this through, so thank you! XX

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  6. It's so lovely to know you're all better now and the surgery had such a positive effect on you! I get terrible back pains but thankfully it's nothing as serious. You were very brave!
    I hope everything continues to go well for you!
    xx

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    1. Thank you! Back pains are the worst - just makes everything really uncomfortable. I love your blog by the way! xx

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  7. Great post Katie and thanks for clueing me up on something I knew very little about. Your scars look great for such a major op and I would have expected far worse tbh. My husband is contemplating spinal surgery so this was a really poignant read. Plus can I have your figure? I'll trade you a couple of inches on height and we can meet somewhere in the middle ;)

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    1. Thanks so much Charlotte! It's taken a while for the scars to heal completely but I'm glad they're barely noticeable any more.
      Has your hubby got scoliosis too? I hope he is okay!
      Haha - if I could take you up on the offer, I would!! xxx

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  8. I know I am replying very quickly but your post really touched me.

    I am currently recovering from major spinal surgery- I had a congenital lump within my spinal cord which was affecting my motor functions. My left side is quite a bit smaller than the left because of the location of it and they told me if I did not have the op I would eventually have permanent damage and even worse motor function.

    Like you I am so glad I have had my op, the pain is still here but I know it's a pain that will heal. My scar is bigger than I expected but the docs expect my movement to return to normal within 18 months or so.

    Sorry for the tl;dr but I basically started my blog because of this and the boredom of being in the house!

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    1. I'm so glad this post helped you!
      It's definitely good that you had the op - to stop any more damage! I really feel for you - its horrible being stuck in the house. I used to play on the computer alot and I had friends visit me after mine to keep me occupied but I did feel restless and would even just go out in the car with my dad just to get out of the house!
      I hope your pain goes soon, sending my love! xxx

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  9. Katie you are so brave! One of my best friends has this and was 16 when she had her operation. Her parents told me that they would wake her up alf way during the operation to check she wasn't paralysed. I remember being heart broken - let a lone what she was going through!! Thankfully everything went swimingly, and like you after wearing a brace she has made a full recovery and you would never think it happened to her.

    I also serve a lot of grannies who have this condition :( xxx

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    1. Thank you so much Sarah! I'm glad your bestie is doing well now - it must have been horrible seeing her go through it (I hadn't even thought at it from that point of view before). I know that it's very common as people grow older, whenever I see a little granny on the bus with a hunched back I always want to give them a hug!!
      Hope you are well xxxx

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  10. Hey, My sister had scoliosis and had her op in september. They only went in through the side though so her recovery time was very quick and she's fine now. and I'm glad that you're fine; you should wear your scars with pride because they show that you're a survivor.
    I also wanted to share the understanding of the slight annoyance at the "what happened to you?" question. I have RSD/CRPS and am on crutches 100% of the time and get asked that so much! I'm like you coming up with silly things like "I wrestle bears" because its none of their damn business!
    Sorry for the long post; I mainly wanted to say thanks for sharing this.
    Maddy x
    http://thoughtsofagirloncrutches.blogspot.com

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    1. Hi Maddy!

      It must have been horrible to see your sister go through all of it (when I had my op my sister turnt into the devil because she felt like she wasnt getting any attention, haha!).
      I LOVE your wrestling bears excuse!! I need to use that one soon. It must be hard having RSD - you are so much braver than me!

      Just looked at your blog - absolutely LOVE your new hair by the way, its gorgeous! xx

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    2. thank you very much! (never sure if I should put the link so I sort of look at it like a signature)
      I think everyone's brave in their own way and everyone's experience is the most important and real because its theirs if that makes any sense. Siblings are funny aren't they. I sort of felt after all my hospitals and mum's attention it was only fair that she got a share although wish it hadn't come about because of that! I'll swap you wrestling bears for crocodiles if thats ok! xx

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  11. I never knew you had gone through all of that Kate, obviously you would never know! Wow your so brave! Thanks for sharing that with everyone, and hopefully you'll be able to help others with similar conditions. x

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    1. Thank you Kate! Hopefully see you soon!! xxx

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  12. i have that too! it's visible but didn't get worse over the years. i got because my bags for school were too heavy when i was still growing :(

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    1. Oh my gosh! I always try to wear a back pack to try and make my shoulders more even now! I hope your back is okay now - get a backpack okay!! xx

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  13. Thank you for sharing! I have it too, and think it's about 30° or so, unfortunately (and I am 167 cm). Not so bad for operation, but bad enough I'll probably have to wear medical corset (don't know the right term in English). Greetings from Bosnia :*

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    1. We call it a back brace (but I think medical corset sounds a lot nicer, aha!). I hope you are okay and I guess its good that it isn't bad enough for an operation! xxx

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  14. I have minor scoliosis which isn't bad enough to require surgery, but it does cause back pain if I'm sitting up for too long, as I tend to lean awkwardly. Thanks for sharing this post! You are a trooper.

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    1. Thank you for the comment! That must be super horrible if you work in an office - I can't even imagine how painful that would be. Hope you are well apart from that! xx

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  15. Thank you for sharing all of this. I love your tattoo!

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  16. Aww this post made me cry, you are soo soo brave! My best friend had Scoliosis so i do know abit about it, i used to visit her in hospital everyday whilst she learned to walk again. It also stopped her from dancing which is where she first found out she had it, she was 14 at that time.
    You are so brave Katie! Thank you for sharing this post.
    Also i understand the height thing, i get i.d'ed all the time and people also take the mick outta me and look down on me because of it but i've always been short.
    Don't let people get you down because of it though, you are so brave and if only they knew why, they wouldn't be so quick to judge!

    Holly,xo

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    1. Awh thank you so much!!
      It sounds like me and your friend have a lot in common (both finding out whilst dancing!).
      You've made me smile tonight, thank you! xx

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    2. Yup, you and my friend do have alot in common! Your story sounds nearly exactly the same as my friends! I'm soo glad your okay now though!
      So glad i made you smile! Honestly you are gorgeous and such a strong person. Such an inspiration!
      Holly,xo

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  17. My brother-in-law had this exact same surgery several years ago. He also has a rod in his back, but the structure straightening his spine also includes cadaver bones to help fuse the metal to his spine. It sound completely disgusting, but his back is so straight you'd never know he once had massive scoliosis.

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    1. That's why I love this surgery! You can hardly tell that I've had it (even when I bend over). Wow - I had to google what cadaver bones were, wow!! That's very very interesting. I'm glad he is well now :)X x

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  18. You're so brave sharing all of this, and for going through this so young too! (: xx

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  19. Such a lovely story, you are very brave x

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  20. I'm so glad you posted this, it made me check my post about my back operation and I realised it'd got lost in my move to blogger from wordpress so I've re-published it today!

    My scoliosis operation

    Great post gorgeous! xxx

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    1. Awh just read it!! Your's looks so much more intense and bionic than mine! Were you born with it too? So interesting! Thank you for showing it to me xxx

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    2. I started to develop mine from about 8 years old because I grew too tall, too quick! xxx

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  21. I love this post, it's so nice to hear about people who have 'recovered' from scoliosis.
    I have scoliosis too, but it's not so bad that I need surgery. I was only diagnosed with it when I was 20 and they won't xray me in case it makes me infertile? I've been on strong painkillers for 2 years since before I was diagnosed and they won't do anything else to help me. I had physio for 6 weeks but that's it. It really stops me from doing things, I can't sit down for too long or stand up.. my scoliosis causes sciatica so my left leg hurts pretty bad too a lot of the time. I was referred to a physio in 2010 and haven't heard anything from them even though I keep following them up. I went to a chiropractor who said that my flat feet were making it worse, so then I was referred to a podiatrist to get orthotics but I haven't heard from them either. My doctors are awful!
    My spine curves to the right and is also slightly twisted. You can see it a bit when looking at my back but it's more evident from the front. The right side of my sternum sticks out A LOT more than the left, it's really embarrassing and the left side of my ribs stick out more than the right.
    If I could have an operation to fix it, I would but it's obviously not as bad as yours was.
    You're so brave to post this!
    I'm @xhjw on twitter if you want to chat about it!

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    1. Hi Hayley!
      Thanks so much for this comment. I'm absolutely shocked that your doctors are so unhelpful about it, thats terrible. You should maybe go to another doctors and tell them that you've never had any help. It sounds like you are in a lot of pain and you should be getting help for it!
      A few X-Rays are bad for you because it uses radiation - but one or two xrays wouldn't make you infertile?? I'm not sure. But I'd ask about that too.
      I really hope you find someone who helps you with your pain too - it shouldn't stop you from doing things in your life. XXXXXXXX

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  22. You're so brave Katie, especially since you were so young. Your scars are barely noticable aswell :) I'm curious though, what does your tattoo say? xx

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    1. Thank you Bethan!
      My tattoo says 'There's more to life than books you know, but not much more'. It's a Morrissey lyric (I LOVE Moz) and I'm a bookworm so it fits perfectly! You can see a better photograph here - http://mesluxes.blogspot.com/2011/05/tattoo-aftercare-what-to-use.html xxx

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  23. I'm glad I read this post! I have a friend with scoliosis that suffers terrible back pains, but due to her age and the type of problem operation is not really an option. I understand the whole issue a lot better now. You went through quite a lot!

    About the belittling.. There are loads of people with issues out there that jump on any opportunity to feel better about themselves. I get belittled quite a lot too, because my clothing style just isn't very grown up and I look a lot younger than I am. Those people will always find a reason. You look great nevertheless :)

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    1. I'm glad it helped! It's a shame your friend is suffering with the pains but can't have the op - it must be really horrible for her. I do get the occasional back ache but they're not as bad as they used to be!

      Thank you for the advice - you are right! It's a shame people have to do that to make themselves feel beter (or for whatever reason) but I guess it makes us stronger! xxx

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  24. My friend had this operation when she was 11, but she grew up about +15 cm, and she was the tallest girl in our class with her 180 cm height-In Turkey average of women is 155 cm.. She used to say 'my back scars are sexy':)

    Lots of girls would like to have your baby face, instead of having long legs. You have the perfect face, the perfect soul. And if you visit İstanbul, you will see that you are not small, but more beautiful:)

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    1. This comment really made me smile, thank you!!
      Haha - women in Turkey are really tall! I need to say that my back scars are sexy too, your friend sounds lovely!

      You are really very sweet, thank you so much xxxxxxx

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  25. Wow, that was amazing to read. Your are so amazing. I was always the shortest of my friends (still am now) but we get to wear heels and be a lovely height now =)
    what does the last line of your tattoo say by the way? Is it "but not much more" cos if so it's amazing.
    xxx

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    1. Thank you so much! That is true about wearing heels, but I find them so uncomfortable so I hardly ever wear them!

      Yup - There's more to life than books you know, but not much more. It's a Morrissey lyric from the song Handsome Devil - you can see a better picture here - http://mesluxes.blogspot.com/2011/05/tattoo-aftercare-what-to-use.html

      :) xxxx

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  26. What a brilliant post - I know someone with Scoliosis but I didn't really know the details. Thank you.

    Oh, and I'm barely 5'1"(and 27 years old) so I can understand what you mean about being talked down to, it's irritating!

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    1. Thank you! I'm glad it was interesting for you :)
      It's so annoying being little and spoken down to, I'm just gonna start wearing heels more, ha! x

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  27. I really admire you for posting this - it takes a lot of guts to post about something so personal, and you've been ridiculously brave (I don't think 12 year-old me could have coped with such a big operation!). My brother was recently diagnosed with scoliosis and lordosis - I used to think he just had bad posture, but it turned out to be way more serious than that and now he will need physiotherapy for the rest of his life to deal with the pain.

    And I know that saying this won't rid you of your insecurity but don't let your height upset you too much - if I were as pretty as you (and I honestly think you're the prettiest beauty blogger out there, and trust me, I read A LOT of beauty blogs) I would be 100% content with myself! :) xoxo

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    1. Thank you! That's such a shame for your brother - could he have the op to make it better? I really hope the physio helps and that the pain lessens for him.
      That's so sweet of you to say, thank you Cara, you are too kind! xxxxxx

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  28. Such a great post. You're so brave! It made me feel a little faint as I think I have it. The bones on my left side stick out much further than my right side (collarbone, hip bone, ribs) but doctors have said my spine is 'normal'. It's awful because it's not 'normal' to be like that but there's nothing I can do.

    It's amazing how much the op has changed for you and so great that it was early enough to really correct your spine.

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    1. Thank you Katie!
      Whenever I see photographs of my x-rays I feel really 'iggly' inside so that must have been like what it felt like you for to read it, if you think you might have it!
      Don't focus too much on it - it must be horrible to feel like there is something wrong that doctors aren't paying attention to - but you are healthy aso thats the main thing!
      XXX

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  29. Oddly, the doctor he saw didn't mention that he could have an operation for it so it was only after my internet research that we realised he could have something done. He's looking into it now, but I do find it odd that the doctor didn't mention it!

    And it is truth! This sounds so stalkery (I really don't mean it to!) but back in the day when I had myspace I remember seeing you on there and being like 'If only I was as pretty as her!' and being scared to add you because of that. Haha oh god now I feel lame xoxo

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    1. Yea that is odd, hmmm!!

      Haha, that's pretty funny (not stalkerish at all!!) and made me laugh! You so should have added me!XXX

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  30. Wow such an honest and brave post to write. I've heard of the condition before but didn't realise how serious it was. I can't even have a needle without nearly passing out so for you to go through something so major as your operation and the recovery afterwards at the age of 12 is amazing!
    We all have insecurities and besides theres so many pretty wedges around this summer (much comfier than heels!!) to boost your confidence, but your beautiful the way you are! :) xx

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    1. Oh no! Must be really horrible to be afraid of needles! I don't think I had a choice so I've grown to quite enjoy injections (that really makes me sound like a freak, haha!!).
      That is SO true. I do love wedges so think I'll be sticking to those this summer, thank you!!xxxxx

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  31. I admire you so much for posting this, you are so brave to go through such a huge procedure at such a young age. I am so glad that it worked out well for you, and that your spinal curve has significantly decreased, that must be such a relief for you. I think you are beautiful and you shouldn't let your height make you feel otherwise, I know thats easy for me to say.
    Jess x

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    1. Thank you! It is a relief knowing that it won't get any worse. Thank you so much xxxxxxx

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  32. This post is so inspirational! I saw your tweets saying you were unsure about posting, but I'm really glad you did :) I need to have rhinoplasty as my nose is causing severe headaches, especially when I wear my glasses which is bad as my eyesight is terrible without them. It's definitely nowhere near as important as your op was but I'm really scared about having it done ): Your post has really boosted my confidence though!

    I'm 4'11 too! I stopped growing when I was about 13, which really sucked as everyone kept saying 'oh you just haven't had your growth spurt yet!'. My height regularly gets joked about by both friends and strangers, but over time I've learnt to joke about it too. I get ID'd a lot, especially when buying games or movies! It's a bit embarrassing when people mistake me for a child (although I do get away with child tickets on the bus/train haha!).

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    1. Aw really! I have constant headaches all the time too - I'm waiting for my second appointment with a neurologist at the moment to find out what it is, but I'd love a nose job, haha!!
      Don't be scared of the operation at all - it's to fix the problem so don't be afraid, just think positive that you won't have headaches afterwards!

      Are you really! I always imagined you to be taller! I do get jokes from friends and fam aswellbut just laugh them off now. Lucky you get away for child tickets, that's the only thing I don't get away with!! xxxx

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  33. Katie you are such a brave strong young lady and you are an inspiration to all around you. I can't ever imagine what you and your family must have been through especially at such a young age, it's truly touching and looking at the picture of yours scars now, well I'm speechless, the surgeons, doctors and nurses have certainly done an incredible job as I honestly struggled to see your scars on the picture. I don't wish to sound cheesy but what you might have lost in height you made up for in strength and courage - something that will make you "stand tall" for the rest of your life. Thank you for sharing your story xxx

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    1. Thank you for this wonderful comment Tia. The doctors and nurses did do a fantastic job and I'm really appreciative to them (I even made them sign their autographs in my book before I left the hospital after my op, haha!!).
      Your words mean so much to me, thank you xxxx

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  34. Hi Katie,
    Your post was really informative and so interesting, i'm sure you've helped a lot of people reading this to understand a common but unknown medical condition.

    My boyfriend had a hole in his heart as a child and had a few operations resulting in a huge scar down his chest and a 'plug socket' like scar just above his tummy button. He says it's hard having to explain it to people sometimes. I remember when he first showed me it, he whipped his shirt off ( ^_^ ) and said I'll show you this now to save explaining it later and he was so shy and worried what i'd think of him. I pulled down the neck of my top and showed him the love bite-esque birthmark i have on my collar bone and we both instantly felt at ease with each other.

    You're very brave to go through that at such a young age, you shouldn't feel insecure, i've learnt we all have our things we dont like about ourselves, we just need to tell ourselves that we're not the only one, everyone has something they dislike and get on and enjoy life :) xxxxxx

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    1. Hello!!
      I was tested for a hole in my heart before my operation but thankfully I didn't. It must have been horrible for him to go through that. I LOVE your story about showing eachother your 'imperfections', although they are apart of you both and it sounds like you have a strong relationship because of it. It's so sweet (I hope I find love like that too one day!!).

      XXXXX

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  35. Thanks for sharing this, it was really interesting. I hope you made up for lost time with that Spyro game! (I still play mine at 21. No shame.) :)

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    1. HAHAH!! I still play Spyro now too!! Hahahahaha, this comment made me laugh. There is no shame, Spyro is amazing!!!

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  36. I don't know anyone with it, but kudos to you for sharing your story and reaching out to people. :)

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  37. lovely post, it's always nice to 'get to know' bloggers a little more. My friend had the exact same operation done and I know what she went through but like you, shes all well now and no more problems! x

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    1. Thank you! I agree - it's nice to hear about the people behind the blogs every now and then! I'm glad your friend is well now too :) xxx

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  38. I have it, and just like you I was born with it, except... I was in Ukraine when I got diagnosed, so there was no operation for me. I think I was about 12 when we figured it out? Instead I had several years of physical therapy, had to do special exercises for 1-2 hours a day and had special medical massages (do those even exist? lol), and had "electric shock therapy" (ok it sounds really bad, but I just don't know how to translate it. Basically little patches of whatever were attached to my skin and something was going through them because I felt a pretty strong tingling sensation, and was instructed to tell if it hurts/burns). Oh and I wasn't allowed to run and ride a bike! :( :( I hated it, but for some reason the magic number was 15, so the second I turned 15 I started doing all those things.

    I'm not sure if my curve was as bad as yours, but I do remember the xrays looking pretty "curvy".. hmm, I think I even have them somewhere lol. Well good news, my scoliosis did not progress beyond whatever I had, so I guess all those things did help :) I do have a lump in my back up to this day, but it's not as noticeable unless I bend down, so I'm not too worried.

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    1. Oh no, this comment made me so sad to hear that you couldn't have the surgery because of where you were. I'm glad that the physio and 'electric therapy' helped (that does sound very interesting!!) and that it hasn't progressed or gotten worse. As long as it isn't interfering with your life now then its good. Sending you love xxxxx

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  39. Very inspiring story and I'm very proud of you because of the braveness you have. Just keep on striving and don't give up. God Bless you always.

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  40. Thank you for being brave enough to post your story katie.
    I had scoliosis surgery twice at the age of 15, each operation took 9 hours and I spent a year in a plaster cast from neck to waist. My curve is still a lot more visible as I had a very severe curvature to the left.my left leg happens to be longer than my right and I am also same height as you and 30 years old.
    I still have severe scarring and suffer from a lot of pain but I am also the proud mother of an almost 2 year old little boy who is healthy with no spine problem. Pregnancy was difficult but I had a c section and a lot of care.
    I am very self conscious about my appearance but my husband and family look after me and are very supportive and I am proud of myself for being strong enough to go through such trauma at a young age.
    Sorry for rambling but I would just like to say that surgery is scary and difficult but so worth it.I think of my surgeon everyday and thank him for improving my life.
    Sonee

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    1. Thank you so much for this comment, Sonee. Your story is so much worse than mine! A year in a cast must have been horrible and to have been through two operations must have been devasting for you and your family. I'm sad to hear that you're still in pain too :(
      You are lucky to have a wonderful family and a baby boy - I hope that everything goes swiftly too if I ever have children. Sending my love xxxxxx

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  41. What a great post. I actually know someone who went through this and she'd love to read this so I will be sure to pass it on :)

    lauraxamy.blogspot.co.uk

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    1. Thank you Laura! I hope she likes the post too! xxx

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  42. my boyfriend has the same condition, only his is hardly noticable, well to me anyway! I can sometimes see it but he is quite self conscious about it. He's just under 6ft so I guess it doesn't affect him as much as it could do. Thank you for this post, I feel I understand his condition a little more thanks to this! x

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  43. I read your story and just for a moment I thought it was me. I have scoliosis too. I am 21 years old and I have 28 degree curve in my lower back, I am 5' 3''. The doctor said that I don't need surgery because it is below 40 degree curve. But my back hurts a LOT and I am not self conscious in summer wearing a bikini. I have to ask because I don't know anyone with scoliosis, does the surgery hurt? Was it difficult for you to walk or anything else? And how much time did you need to recover? My doctor said that recoveries from that kind of surgeries are difficult and i am a little scared :-(. Don't worry, scars are beautiful and remind us all the difficulties we've been through. They make us stronger. God bless you :-)

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    1. We have a lot in common!!
      To be hoenst I can't remember much about the surgery but apparently I was in pain with the chest drain and just felt generally really uncomfortable. It wasn't difficult for me to learn to walk again (I had a zimmer frame or whatever they are called) and a lot of help from nurses and doctors.
      They say you need 6-8 months to recover fully, which sounds like a horribly long time, but I only had a month off school and only had to wear my back brace for three months - afterwards I did feel much better.
      I would not be worried at all about the surgery though - it is there to help you and it might hurt a little at first, but your life will be better afterwards!
      If you have any other questions, please don't hesitate to ask me or send me an email! XXX

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  44. As a student physio, this is interesting for me to read! I love seeing things purely from the 'patients' perspective! Your scars are so neat, I think they show strength, and you do look chirpy in the brace picture, what a brave kid! I remember having a brain MRI scan when I was 5 thinking my parents were getting rid of me and I would go out of the other side and not come back, haha! I genuinely think things like this shape who you are, and although you're shorter than you may like and that makes you feel a little self concious, you will always always be able to emphasise for anyone with a similar problem, and thats amazing. I've been hard of hearing since I was 4-5 and whilst people often say "Aww, bless you that must be awful" I think of how I got through the bullying, refused to wear hearing aids through school and now wear them without a care in the world - Nothing anyone says can touch me and I'll always understand other people with an impediment, and they'll believe in me!!

    Wow, essay!! Thank you for sharing this post! :)

    http://fridayisforever.blogspot.co.uk/

    xx

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    1. Haha, you're MRI story really made me giggle. I loved my MRI scan, I remember I was allowed to choose an album to play whilst it was happening (because it was an hour or so long) so I chose AQUA's album and loved it! Haha!
      You are right, I do think it shaped me and strenghtened me and it sounds like you feel the same too. I like the thought that those who have been through a hard time will always understand and be there for others :) Thank you lots Sarah xxx

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  45. It's really interesting to get to know other bloggers better and obviously this was quite a brave and personal post to write. It's a bit of a bummer being small (I'm 5.1), being at elbow height you always get drinks spilt on you on a night out! I do feel spoken down to at times, but if i'm being honest I love being small! We're just mini:) This was a lovely post and really helps to expand awareness of scoliosis so thank you for sharing your experience!

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    1. Haha yes!! I always get trodden on at clubs (I remember I was on a night out in a club in Soho and Agyness Deyn (the supermodel), literally stood on my foot because she was so tall and I was so little)!
      Thank you for the lovely comment! xx

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  46. Wow, what a story! I didn't know scoliosis was as common as you say. I think you were lucky that the op went well, as the spine is playing such a big role in the body!

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  47. I must say you are a very brave woman to have faced such. Great post. spine doctors in nj

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  48. I admire your honesty in sharing this with all your readers. You're right, this is an excellent way to let others who are going thru this (among other medical conditions) that things hopefully will work out for the better.

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  49. Hey katie, you shouldn't worry about being small. I'm only 5"3' and also feel like I get judged a lot because of that. People always ask me for identification too and a lot of people tend to treat me like a little kid because I'm small! But being small is also a good thing...it makes us even cuter than we already are! ;)

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  50. I really admire it when beauty/fashion bloggers write about something that's much more personal, for them. I have a predisposition towards scoliosis because of another congenital bone deformity (pectus carinatum), which, while I currently don't have it, I do have a horrible slouch and good posture is uncomfortable/bordering on painful to maintain (and you can kind of see it in some of my FOTD photos >.> <.<), and I could develop it in later life.

    What was recovery from the surgery like? I might have one myself, and I'm a bit scared, because its major and orthapedic and ribs and euughhhhh. My email is iwanttomakeup at yahoo dot co dot uk if you want to talk there rather than commenting, but I'll check back here anyway :)

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  51. could it have been any other way, sweetie?

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  52. You are a very beautiful and brave woman Katie! I admire you so much. Thank you for this post!

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  53. This is a really nice post. I'm glad you're ok now and I think you are really brave. I'm only 5 foot and sometimes I hate being so short. But there are a lot of benefits to it and I am a firm believer that good things come in small packages. x

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  54. I was so shocked to come accross this when scrolling through your blog. I also have Scoliosis with almost identical scars, except the one on my back goes from the bottom of my neck to just above my bum and my rods are the full length of my back. Mine was found when I was 7 which was also when I had my first operation, I have had several since as I was still growing and they couldn't completely fuse my spine so young. I also had some bone removed from the back of my neck, as it was stopping spinal fluid getting to my spine, which caused the curve... So, that's another scar.

    Was the small scar next to your side scar, where they put the tube to collapse your lung? I think that's what mine is.

    I have only been blogging for a few months, so dont feel completely comfortable sharing my full story and pictures. But this is so brave of you, it's nice to see people with similar interests going through the same thing.

    Thank you for sharing your story :-) xx

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  55. Hiya Katie Im just watching Guliana Rancic THS on e! She has scoliosis too and a pretty similar story which reminded me of readin yours, look what she has acheived shes huuuge in Hollywood! Just thought id share this incase u were interested dont let it get u down you're beautiful x

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  56. I regularly follow your blog and I got positively surprised to read about this topic. I also had this condition caused by an asymetry on my hips, I have 10º and doctors they didn't give it so much importance but after 6 months it became slightly worst and as a prevention I had to wear back cast (from 12 to 16). I have to recognised that I had bad moments with it. Your scars have faded and their skin tone is integrated with the rest of your skin, they are also thin and hardly noticeable, even tough they look nice and you have beautiful back, it doesn't seem you had scoliosis. By the way, why did you mention something about you would like nose surgery? I wish I had your nose or your perfect face.

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  57. Wow, thank you so much for sharing your story Katie, this was really interesting to read & also very strong & brave of you! Can't believe you had to go through something like that so young! But you overcame it so well & are such an incredibly beautiful woman! I am actually 4'11 too ;) the reason I'm short is due to a glandular disorder I was diagnosed with when I was a young un & like you I truly hated being the shortest in the class! But eventually I came to terms with it & have accepted my petite-ness! Also people thinking I'm younger than I am actually makes me happy these days! Haha! ;)

    Love Aysh xoxo

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  58. i`m 23 and i`m from Poland. I have scoliosis more than 50 degrees... I am waiting for this surgery but the queue here is very long so my surgery will be next year. I`m really scared because i don`t know what if sth goes wrong and i will be paralised to the rest of my life. My scar also will be bigger but i have a question. Do you know some gut product that could heal the scars?

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  59. I was doing random scoliosis searches and was brought to this blog post. I too developed scoliosis while growing up but never had the courage to go for the surgery. You're truly amazing for a girl. I'm a guy and I can't hold a candle to you.

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  60. I am 13 now and had several major surgeries for scoliosis :( at first my degree was about 38 or 39 and is now down to 10ish. :) im very happy with the rods and pins helping with my apperence but my right shoulder sticks out and its very embarrasing for me. My hips are actually pretty normal but wearing tanktops and bikinis are not my favorite lol. If you have some shirts that hide it or make it less noticeable that would be awesome <3 i have one rod on each side with hooks on the top and bottom. My scar goes from right below my neck, all they way down to my lower back :/

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  61. I am really touched by your story...i have scoliosis and it has rendered me paraplegic. i hope one day i will undergo the operation and walk again.
    you can visit my blog http://scoliosisnutty. blogspot.com.es/2012/03/fellow-scoliotic-starts-localcharity.html

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  62. wow this is amazing! I have scoliosis (although not as serious as I need a brace), but I also have spina bifida so back/shoulder/everywhere pain is very common for me! I only found out about two years ago- I'd been complaining about back pain on and off for years without thinking much of it until I finally got an x-ray and found out! The doctors couldn't believe my posture was so straight. People don't realise how debilitating constant back or shoulder pain can be!

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  63. I am really glad you wrote this post! I hadn't known anyone with this condition until recently and it's nice to see how the journey you have been through has made your life better! I also think its great to see how inspirational you have been for other people suffering from th condition! Although I can't relate to what you must have gone through I am also only 4'11" and hate it! No one really knows why I'm so short and I have no short family members! I love your blog btw! Keep up the good work!! X

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  64. It was lovely to read your story! I was diagnosed with scoliosis at 17, I'd noticed once hip sticking out more than the other for a while and that my posture was uneven. I didn't get much advice at that time, the useless doctor I saw for my second x-ray couldn't even measure the angle of curvature! all I know is it was pretty scary looking and looked more severe than it does in person.
    I saw a new doctor recently (I'm now 22) to get a second opinion, and feel reassured that I don't need any treatment and that it isn't progressive now that I have no more growing to do. Mine is adolescent scoliosis which came about during puberty, so it was never going to get that bad luckily. I just get a fair bit of back pain but have been swimming regularly this year which has really helped I think. Funnily enough, during my year traveling I don't remember having any back pain at all! I must have strengthened my muscles with carrying 18kg on my back most days, but it did wonders for my posture!

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  65. Hi, it's great to read your story. My little girl who is 5 years old has scoliosis. I think she is going to have surgery soon. It will be fan to show her your story. X

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  66. Gosh, that must have been horrible for you! You're really brave though, and I admire you for going through that

    Lauren
    X

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  67. One of my best friends from school has Scoliosis and had to have an operation in her first term of sixth form as they only found it when she was 15! She's still got quite a curve that makes one side of her ribcage stick out but shes very proud of her scar!
    xxx

    http://sweetienessandlight.blogspot.co.uk

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  68. Hey thank you for posting this it makes me fell good that someone else can get through it too.

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  69. Hey thank you for posting this it makes me fell good that someone else can get through it too.

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  70. I'm really glad I was able to take part in the beauty bloggers chat tonight because I came across your conversation with Bubblegarm and after checking the Wikipedia article I believe I may have Scoliosis.
    My mum noticed many years ago that my spine was curved. Over time I have noticed that I sit leaning to one side, that some of my ribs strangely stick out and since I have lost some weight I have noticed that one hip is more prominent than the other. This has never really affected me too badly so I haven't been to the doctors to try and find out what was wrong. I have danced for over 20 years and this has never posed much of a problem so I don't think I am suffering that badly from it. The only thing I have noticed is that when I was much younger I used to be able to do crabs and back bends and now I'm pretty much unable to bend backwards, which I am assuming is because of the curve in my spine.
    So I just wanted to say thank you for posting about your experience of Scoliosis. xx

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  71. Hi Katie, after reading your story its making think twice about having surgery now. I also have scoliosis and had it since I was 15, now im 32 goin on 33. As I get older I can feel like its getting worse. I havent been to the chiropractor lately bcuz im scared of what hes goin to tell me. I keep telling myself if I want to feel better then I should just suck it up and go see one. Im not hunchback or anything but I can feel the crookedness in my body, its a very annoying feeling. Do you have any advice for me??

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  72. Hi my name is Travis could you give me your email or something I have scoliosis and its not really something I like to talk about publically. Thanks

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  73. Hi my name is Travis could you give me your email or something I have scoliosis and its not really something I like to talk about publically. Thanks

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  74. Hi my name is Travis I run cross country and track and I have scoliosis I was wondering if I could get your email or something just to ask about it and talk about it. My email is travisloyhillier@gmail.com your post was very brave thank you.

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  75. Love this post-- I have mild scoliosis, not bad enough for surgery, but it did cause some hip problems which i had to have three surgeries to correct! I feel your pain with the fear over surgery, and the troubles that come along with being stuck in the house for so long. Returning back to school was hard for me with the brace i had to wear (it wrapped around my abdomen and my thigh and was connected with a metal bar), but I cannot imagine what it would feel like to be wearing a full brace on your body for such a long time. As far as scars go, I have two small one inch round ones on my right hip, and a 12 inch long, inch thick one of my left hip. Although I'm embarrassed to be seen at the pool or otherwise with them, I love them because they tell my story. You should embrace yours too, they are beautiful along with yourself! Best of luck with everything, xxxx

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  76. I found this post so open and inspiring. My sister is about to begin treatment for her scoliosis, and I've been reading a lot of people's personal experiences so I can gain a better understanding of the condition and what she will have to go through. Thank you for the amazing post, I showed it to her this morning; it definitely helps her to know she's not the only one.

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  77. chiropractors are the best specialist when having body pains.

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  78. Hey I also have scoliosis. but I haven't gone for the surgery yet. after reading your story Im quite impressed you're a brave girl :)

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  79. Hi my son has scoliosis his curve is 37* he is onlay 9 he is 4 foot tall i am so scared i can see it it worce from his last xray i don't know Wat to do :-( he is back to Edinburgh sick kids hosp next month.

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  80. I have Scoliosis too, although it is only a 22 degree curve. I am 15 and I am the same height as you so it's nice to know someone is the same height as me! I'm probably not going to grow much more. My brother who is 18 also has Scoliosis which is very strange as it not very common to happen to two siblings. He had the surgery for it in December. His curve was much worse, by December it was over 70 degrees. A lot has changed since you had your surgery, although the circumstances were different due to the greater degree of the curve. He has one large scar down his back and has two rods in his back. His surgery lasted seven hours. Although now, some things about the surgery have changed a lot. He was only in intensive care for one day and was not required to wear a brace at all! We was standing and taking a few steps within the first 3 days. He was then allowed to go home on the 8th day. He did have a wound infection and had to go back into hospital a month later but that was just unlucky. Almost 6 months later and he is almost back to normal, with a curve of 28 degrees. What surgeons can do these days is amazing!

    Étáin
    xxx

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  81. Hey Katie I hope you reply to this as soon as you can:). Basically I was just wondering that is your tattoo real because I am very self conscious of my back scars and want to get a tattoo done but I'm afraid due to what I have been hearing that people who have had scoliosis surgeries cannot get tattoos done because the tattoos ink sinks into your bloodstream and somehow damages the metal rods:/? so is your tattoo real... any issues? will really appreciate if you respond, thank you and I hope your much better now:) xxx

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    1. Hello!

      Yes! I have four tattoos and they are all real. I've never heard that before, sounds like a rumour to me! x

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    2. Hiyah Katie!
      I came across your blog when I was researching scoliosis and I thought it was spooky 'cause we're both called Katie and we both have 32 degree scoliosis! What are the chances haha! Then I read your blog and realized you're the same Katie I know from YouTube! Small world, huh? Anyways, I'm thinking of having the surgery to fix my spine and correct it, but honestly I'm scared to death 'bout it! How did you get through it?? 'Cause I honestly don't know if I'll be able to! Any advice or info you have on it would really help me out 'cause I have a lot of questions! x

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  82. i had scoliosis i didn t have to do surgery but i healed now i m good and i stoped growing lol i was sooo tall (the opposite of you sitution) hahahaah i dreamed of stoping and getting a little shorter now my curve is 10 degree and i stoped growing just one question if you stoped growing and you still have a little amount of scoliosis is it gonna get worse ????? and PS: you ARE SOO BRAVE

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    1. i am not a medical doctor however i think it would get better/worse on what you do. For example by lifting heavy stuff,sitting in a bad position…etc would worsen it . if you did the right exercises… would get better.

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  83. Hello,

    I am currently a 2nd year Contour Design Student and I am looking into how having scoliosis affects your lingerie. I have had spinal correction surgery myself 5 years ago and so am aware of some of the problems but would really appreciate your comments.

    Thank you,

    Emily

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  84. The spine is critical to the support of the body, providing balance and flexibility to the skeletal frame while absorbing shocks and daily stresses that are placed on our backs. Glad you survive with the surgery. Keep it up!

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  85. I don't even know how I ended up right here, but I thought this put up used to be great.

    I do not recognize who you're however definitely you are going to a famous blogger in the event you aren't already.
    Cheers!

    Here is my webpage; Michael V. Hines

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  86. I was watching one of your videos (50 facts about me) and heard you mention your scoliosis. I'm also somebody who went through a surgery and the same process. I had a 69' curve and it was the most frightening time of my life. its nice to be able to relate to somebody else who has gone through the same things. great blog and videos. I love reading and watching :) xxxxxx

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  87. I found out I had Scoliosis about a year ago now (i'm 14) and my family and I are still unsure about having the operation as i've never had an operation before and im just not sure what to expect. I am also writing a blog post on all my thoughts to help me make the decision but i was wondering if you would help? :)

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  88. I'm 15 and I just had mines on Septemeber, I used to cry every day because I missed home and my friends missed 1 semester and now I'm back at school :) my back was 62° when i got operated... not sure how much it is now tho

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  89. i'm 20 and am having a scoliosis surgery with a 55 degree curve in like 2 months and i wanna and i just wanna know how many will i get taller after this surgery "well am tall enough already and dont want to get any taller :D "

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  90. I'm glad to read I'm not the only one who has scoliosis. My scoliosis wasn't too bad, only 25 degrees but I wore a back brace for 2,5 years. It friggin' hurt, but I'm so happy I wore it back then because it could have been worse if I hadn't worn the brace. It's just the back aches that suck and the regular hospital visits :P I'm also missing a rib which is quite normal, (that's what my doctor said) but it's fun to tell people you're missing a rib and seeing them act like it's a huge problem when it's not and you're like "Calm down, dude." lol :)
    You're an example for young girls with scoliosis and your blog is amazing, keep up the good work! :)
    xxx Nausikaä
    www.fashionatic.be

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  91. My boyfriend has this condition and like you, has had the operation because his spine was at a 43 angle. It's so lovely to hear that you're happy with the results:) Unfortunately my boyfriend is completely insecure about his back and hates wearing certain tops now as his ribs have started to stick out on one side again which gives him a kind of 'hump' when he bends over meaning he'll need further operations to realign his ribs! It's really horrible experiencing him going through with this especially as he's in a lot of pain and doesn't want any more operations... Thank you so much for writing this post, Its made me really understand the condition a bit more! I'm trying to support him the best that I can and now I feel like I can a bit more now :) Thank you!

    Mollie @ bellerae.blogspot.co.uk xxx

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  92. HI! Im Brynna, I have scoliosis. My 45 degree curve has put a burden on my life ever since I am diagnosed at age 9. I am 14 now and the doctors are saying that my spine if very flexible and I hopefully won't have to get a surgery like you did. This would ruin my chances to model, be a scholar in volleyball and make things harder. I have a few questions, has the surgery given you any limits, from pain to not being able to bend over? Do you still have to go to the doctor to get it looked at regularly?
    Thanks for this post, I found it helpful and informing. You are very brave to go through like this, I hope that I can be done with this and some thing like make a blog like this.
    (: thank you
    oxox

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  93. Hey Katie, I have so common story to yours. I also was born with scoliosis, which was discovered only when I was 13. I didn't need to go through operation.
    But I am also very short, even shorter than you (145 cm). The most asked question I hear from people "how tall are you?" or the exclamation "oh, you are so small!" Whatever... I completely understood everything you wrote in the post, such a familiar story... thanks for sharing!!!
    Now I am 23 and try to accept myself as I am.
    But you know what is a good thing about it? When you will be 40 you'll still look like 30, which is absolutely a good thing :)

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  94. This post is incredibly brave for you to have written. And you are so beautiful. Love you. Thanks for sharing wonderful post.

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  95. I have scoliosis as well and was just diagnosed about 2 weeks ago. I am almost 14 and about 4'10. I have (like you) a double S curve. the top one is 40 degrees and the bottom one is 42 with rotation as well. I do not have to have surgery but I do have to wear a brace everyday. I only got the brace about 2 days ago and I'm having trouble getting used to it. I can handle the awkward pains of the brace but I'm having problems finding cute things to wear without showing the brace (not that I mind if people ask me about it, I just feel better about myself when I look in the mirror and still look normal��) so anyway, I feel really ugly in it which sucks considering no one else even really notices it but me. I guess I'll go shopping and get used to it. haha. but yeah, any suggestions for self asteem while wearing the brace?

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  96. Great post! Been reading a lot about this back condition. Thanks for the info!

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  97. Hi I'm 12 years old I'm getting surgery and in terafide I don't know what to expect will the iv hurt or will I be paralised or is there any other problems about the surgery

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  98. Thank you for sharing your story, it's so incredibly brave of you to do so. I'm glad that the operation went well and that you can establish some normality in your life! And I'm sure you've helped so many people by sharing this!

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  99. helu miss katie..
    i'm an avid reader of your blog.. i also have this so-called crookedsexy scoliosis (hehe)..
    i'm having a hard time everyday especially during night time because
    of back pain and shortness of breath.. almost every night i cried because of pain..
    i would like to say thank you so much for inspiring me that despite of this condition of mine, life must go on .. !! i would love to hear your expert advises on this matter.. i have this fear that one of this days..i might also undergo a spinal surgery and it scares me (REALLY) expecting more posts from you..
    thank you so much ^^

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  100. helu miss katie..
    i'm an avid reader of your blog.. i also have this so-called crookedsexy scoliosis (hehe)..
    i'm having a hard time everyday especially during night time because
    of back pain and shortness of breath.. almost every night i cried because of pain..
    i would like to say thank you so much for inspiring me that despite of this condition of mine, life must go on .. !! i would love to hear your expert advises on this matter.. i have this fear that one of this days..i might also undergo a spinal surgery and it scares me (REALLY) expecting more posts from you..
    thank you so much ^^

    ReplyDelete
  101. Thanks so much for this post, this really provides some hope for everyone out there dealing with this terrible disability.

    ReplyDelete

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