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My scoliosis, advice??

Posted , 24 users are following.

BizzieIzzie
BizzieIzzie

Hi, I am a 14 year old female currently going through a major academic exam stage of my life, I have idiopathic scoliosis which is currently between 36'-37' in my thoracic and lumbar spine, and I am getting significant amounts of pain in my lumbar spine. I was diagnosed 2 years ago, and due to my late diagnosis I was never offered a brace of any kind, however since then, my curve has progressed and my pain levels are rising.

My question is this, should I opt for surgery? I understand that surgery is discussed at around 40' but I am close to that now and my spine is still progressing, therefore I have been thinking about it quite a bit - part of me is obviously worried about the surgery and the impact it would have on my academic studies, but another part of me is saying that I would rather have the surgery as if I didnt I would be in considerable pain for the remainder of my life, which to me does not seem to be a great option!

I am currently being monitered 6monthly, but I don't feel very comfortable with this! My doctor said himself that my curve had worsened, but still they had nothing to do about it? Is there really no other options? Physiotherapy has not helped to reduce the pain, and it has now got to the point that I really want something done about it!

Thanks for reading and any advice would be amazing!!!

2 likes, 56 replies

56 Replies

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  • rebecca16468
    rebecca16468 BizzieIzzie

    Posted

    Hi Bizzie Izzie

    I had scoliosis as a teen I'm now 21, 

    My curve was so bad I had no option 

    but to go through with the operation.

    As daunting as it seems and having to

    make such a huge decision at such a 

    young age I feel for how you may be

    feeling right now. But it's mad in a few 

    years time you'll look back on it and think

    of how far you've come. 

    I wouldn't be worried about your studies 

    If you have the fight in you to get up an do things 

    your more than capable of doing so 

    The only thing that does bug me now is the scar but that's only because I know it's there other people are completely clueless 

    Anywhos I'm rambling, but honestly

    If you have any questions or need any advice feel free to ask smile 

    Good luck with whatever you decide xxx

    • BizzieIzzie
      BizzieIzzie rebecca16468

      Posted

      Rebecca, Thank you so much for this - it has out me in a much better position! I think I have got to the point now in which I need to decide, and thats the hard bit!

      But I am a fighter, and I don't intend to be down for long, especially if I opt for the surgery.

      Thank you so much again! Izzie xxx

  • steve08796
    steve08796 BizzieIzzie

    Posted

    Hi Izzie.  I'm a New Zealand physio; I've been treating spines for 30 years.  I have a mild scoliosis myself - which is really common.  The scary ones are those that accelerate rapidly about the age you are now - you're facing up to it in a really mature fashion and well done.  There's a thing we invented in New Zealand which works really well for mild scoloiosis.  I'm not sure how much it can help a severe scoliosis which is accelerating, but it's a logical thing to try, could help a great deal, and can't harm.  We built it mostly for the hunched upper back (also called a kyphosis) which is really common with people hunching over laptops, but it also is ideal for scoliosis.  Essentially, lying back on it uses your own upper body weight as a lever through the raised ribs on the side that the twist is turning towards, to oppose that twist.  You can spend several minutes in the evening on it.  I'm not making ridiculous claims for it like straightening all spines, but it's probably the best home treatment device in the world for mild scoliosis, and ought to help even with the severe ones.  Of course muscle strengthening and massage helps too, but the product has enough specific leverage to really loosen off the tight, twisting joints themselves, if they're not too severe.

    Incidentally, as an experienced physio I really distrust this 'idiopathic' classification of 80% of scoliosis.  'Idiopathic' just means no-one's sure why it happens.  In the vast majority of scoliosis problems I've seen, there are really obvious drivers, for instance one leg being longer than the other.  But these aren't often identified and countered.  Try and find a physio who listens and takes longer than a few minutes with you!  No guarantee, but NZ and Aussie physios tend to be pretty good at this sort of stuff.

    Best wishes, Steve August.

    • BizzieIzzie
      BizzieIzzie steve08796

      Posted

      Hi Steve, Thank you so much for taking the time to write this reply, I will definitey look this up, and I will let you know how it all goes!!  In the last 2 years, my curve has increased by approximately 12 degrees, which obviously is not what we were expecting or hoping for - or this reason I have been offered the option of surgery and I think I will take it - for this reason I would like to ask you if there is anything that you feel that I should be doing (physio-wise) either before or after the surgery?

      Thank you so much again! Izzie x

  • steve08796
    steve08796 BizzieIzzie

    Posted

    Hi Izzie.

    No problem.  Let's think about it logically - and this isn't always how health professionals including doctors and physios approach problems.  Often it's easier to say, well it's such and such a problem, therefore we do such and such for it.  That often does work, but often you just get a standard answer which doesn't fit the actual problem you're asking for help with.  Actually this happens a lot in life generally and it's a good thing to watch out for.

    So, your spine is starting to twist in one direction.  Okay, let's try and oppose that happening.  That needs three things - muscles that are strong enough to rotate you in the opposite direction of the twist, other muscles that are stretchy enough not to stop you turning to oppose the twist, and spinal and rib joints that are free moving enough to let you turn to oppose the twist.

    Now I'm not making ridiculous claims.  The twisting itself may be stronger than your ability to oppose it - that's why surgery exists as a much stronger option.  But it's sure worth a go, and anyway the more you can oppose the twist yourself, the less the surgery needs to, and the better result you'll get.

    So generally you need (1) muscle strengthening exercises to get the muscles that turn your spine to oppose the direction of the twist seriously strong.  Gyms have machines that do this better than just home exercises.  Best combination is a physio who can set you up with a programme specific for you to do this strengthening in a gym.  Try and find a physio who takes at least a half hour with you - just a few minutes means theyhaven't time to do a proper job or aren't interested.  Unfortunately this happens.

    (2)  You need muscle stretches to oppose the direction of the twist also.  You hold these stretches for up to four minutes - just like yoga.  You can do these at home.  Again, you need someone to look at your whole spine and work out what works best for your specific problem; good physio is good at this.

    (3)  You have to have enough leverage to stretch out the tough, tightened collagen around the joints that are twisting.  Just muscle exercises on their own don't have enough leverage to free hinges that are too tight and twisted, and yours are like that or they wouldn't be contemplating surgery.  Lying back on the device with it under the raised ribs on the side of the twist uses your own upper body weight through the ribs acting as little crowbars to oppose the force of the twist.  My experience as a physio of 30 years is that so often physio of just exercises alone doesn't work because they don't have enough specific leverage to work on the joints.  It's not wrong, just not strong enough on its own.  The device is just so much stronger, and you need that.  It's the combination of (1), (2) and (3) that works best.

    Lastly, do try and find a physio who can check you over and look for anything obvious driving the scoliosis in the first place.  This can be as simple as one leg being longer than the other - which is my own case!  NZ and Aussie physios tend to be pretty good at this. I really distrust that 'idiopathic' diagnosis.  Things happen for a reason, and often it's really not that difficult to find if you just look.

    Very best of luck.  Push it all as hard as you can in a logical direction.  Don't assume the health professionals are doing their best for you.  The good ones are, but nobody is as much an expert on what it's like to have your spine as you are.  Take advice, but make up your own mind about it.  Again, a lot like life..

    Best wishes,

    Steve August (B.A.,Dip.Physio.(NZ)).

    • BizzieIzzie
      BizzieIzzie steve08796

      Posted

      Steve,

      Thank you so much with your detailed and considerate answer - I will definitely look into this! Are there any specific movements or stretches that I could do in the gym, and if so, what machines are they on?

      In regards to my doctors and physio - I have transferred recently to a private surgery which will mean that although I do now have to pay a lot for the services that they provide, I will also have the best care possible, so I and my my parents feel that it is worth it!

      Thank you again, your advice is invaluable!

      Izzie

    • haig_42093
      haig_42093 BizzieIzzie

      Posted

      I had a really good physio in Barnsley but unfortunately I can't get to him anymore. If you think this will help feel free to contact me. He's a sports physio but really helped me with my symptoms and my pain if this will help before your surgery. 

      Haig x 

    • BizzieIzzie
      BizzieIzzie haig_42093

      Posted

      Hi Haig, thank you very much for the information smile

      I wish you all the luck in the world with your pain management!

      Izzie x

    • Mitzime
      Mitzime BizzieIzzie

      Posted

      Hey Bizzie, I thought I would message to see how things are going with your pain management. I've had my scoliosis operation now, it was done 4,weeks ago, I'm still recovering and off school but things are much better for me now. :-) How are you though, did you get much luck from going private? Xoxo
    • BizzieIzzie
      BizzieIzzie Mitzime

      Posted

      Hi Mitz! Thank you for the message - and congratulations on the surgery!! I'm really glad that it went well and that you're feeling better - I wish you all the luck in the world with the journey ahead of you smile

      In terms of me, I am in the process of getting cauterzone injections in my lumbar facet joints to try and help with the pain and I have now decided that I too am going to have the surgery - it won't be until my exams have finished this summer but I have finally made the decision!

      I hope you feel 100% again very soon! xxx

    • crackdoptiks
      crackdoptiks BizzieIzzie

      Posted

      Hey Izzie, hope it's not too late to say anything lol!

      Anyways to make a long story short, I'm 15 now and it was just last year that I completed my fusion surgery for a mild lumbar l5 scoliosis :D

      It was Late June when I had it, and I was out of hospital very early July 2013, from my memory.

      I don't know when you're doing that surgery, but all I can say is to stay strong! Doing it was really worth the time, trust me. 

      Although the recovery stage (around 1-2 weeks in hospital) is painful at first, the pain and effort you put into this stage would definitely benefit you in the long run, which is like over 50 or 60 years into the future!

      It might be more stressing on a girl since you're going through that growing up stage, but nonetheless stay strong and excel all through the process!

      It would actually be a rewarding experience and you get to learn a lot about medical equipment and such. 

      Currently I've hit my 16th month after surgery and I've played tonnes of sport without ever getting back pain (of the degree which I felt before I did the surgery), which is very relieving smile I really am grateful for the Aussie surgeons and nurses here. The first day of walking is really tiring and painful, but you still have to try remember- and never give up! :P

      Anyways, just really make sure you do the post-surgery physiotherapy excercises for those are the critical recovery stuff!

      Listen well to your doctors and next year, you'll be skipping like a goat like me :D !

      Well good luck in your studies and surgery, and I wish you a merry christmas and a happy new year smile

    • BizzieIzzie
      BizzieIzzie crackdoptiks

      Posted

      Hi Crack - it's defiantly not too late - thanks for taking the time to write to me!!

      Advice and stories from other people who are of the same age as me and who have gone through the same stuff as me are amazing!

      Being completely honest - I don't think I've ever been more scared as when my doctor was listing off all these risks and worst case scenarios, just one of them would completely change my life!

      Hearing about your story and your opinion on the surgery has really put my mind at ease ~ and you're right in that in the long term it will defiantly be better!!

      Thank you so much!

      Izzie x smile

  • isy9512
    isy9512 BizzieIzzie

    Posted

    Hey Izzie, my name is Isy haha smile I'm 19 and had my spinal fusion surgery around 3 years ago. I've got a lot of good info and advice I can give about my experience as it wasn't long ago and I'd love to be able to help you and make you feel better about everything as I didn't really have anyone who was there for me. If you have email then I can email you rather than talk on here as I've got a lot to say haha. So feel free to send me a message back if you'd like to know more about my experience. From Isy x
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