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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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  • eileen64__UK
    eileen64__UK BizzieIzzie

    Posted

    Hi Bizzielzzie

    I have Kyphoscoliosis as well but I am 68......was only diagosed at about 60. Although I've always had back pain  The curve wasnt as obvious earlier.

    There doesnt seem to be much they can do. Although my consultant says the op is very successful for young people

    I'm afraid the decision is yours.....sorry

    Love

    Eileen

    • BizzieIzzie
      BizzieIzzie eileen64__UK

      Posted

      Thanks anyway, and don't apologise! Even the knowledge that there are people out there that I can talk to makes me feel better smile

      Thank you!! Love Izzie

  • kimball95
    kimball95 BizzieIzzie

    Posted

    Hey lizzie smile 

    I got offers the op when I was 16 but refused it because I was doing my exams and stuff but I am now 19 and having it at the end of the year smile took me a lot to decide but really the choice is yours my surgeon said that some people can live with it but others not ... My self I want the op because I am conscious about how my clothes sit because my shoulders and hips are uneven so nothing sits how I want it and I also look like I have one waist because I go in at one side and got out at the other and I get really upset about it.

    But it's your choice Hun weather you go for it smile hope this helps xxxxx  

    • BizzieIzzie
      BizzieIzzie kimball95

      Posted

      Hi Kim,

      I think I am in the same position you were in a few years ago!! My posture is very obviously wrong now and I am very self-conscious about it!! could I ask what degree of curvature have had/had now and then? All I know is that it hurts and I can't really think of anything else atvthe moment, am currently transferring to a private specialist in the hope he might have some options for me to try!! Thanks so much for allt he support Izziexxxxxxxx

    • kimball95
      kimball95 BizzieIzzie

      Posted

      Hey Hun 

      Not too sure exactly but my lower curve is in the high 60 degree area and top curve is 30 degree.

      It's is really painful for me I am awaiting physio and my op at the end of the year smile 

       I have found heat helps best for me when I'm in pain so I have a soak in the bath with muscle relaxing bubble bath in smile 

      Hope this helps xxxxxx

    • BizzieIzzie
      BizzieIzzie kimball95

      Posted

      Heat? I might just try that!! I have been having physio for the last year now, but isn't really helping, jence me considering surgery! Physio works differntly for different people, so maybe it will help you loads!! Hope it does, and good luck with your op

      Thanks for all your help xxxxxxxx

    • coral32692
      coral32692 kimball95

      Posted

      Hello, I've just come across you post.  My son is 19 with a curve of 55.  He isn't sure whether to have surgery.  Did you have it?  If so, how are you now?

      Coral x

  • eileen64__UK
    eileen64__UK BizzieIzzie

    Posted

    Hi Bizzielizzie

    How's things going? I've been away on holiday....in a caravan would you believeeek

    I wasnt looking forward to it.....but it was better than I thought

    I dont know about where you are but we certainly didnt need any heat for scoliosis  LOL It didnt got below 22 degrees and some days it wea higher Thats the UK believe it or not.

    Hope things are a bit easier for you

    Love

    Eileen

     

    • BizzieIzzie
      BizzieIzzie eileen64__UK

      Posted

      Hi Eileen,

      Thank you so much for your kind concerns - I am actually in the UK too and have just got back from a holiday on the coast!

      My pain has been getting worse recently, nd I have found that it does now prevent me from doing certain things, for example I could not relax on the beach with my friends and family as I could not lie down at all or even sit in the same position for too long - any pain advice would be great!!

      Hope your holiday was enjoyable!!!

      Love

      Izzie

    • eileen64__UK
      eileen64__UK BizzieIzzie

      Posted

      Hi Izzie

      I can only sympathise with you....not give you advice. I cant lie down either. If I go for an X Ray or something like that I always have to ask for an extra pillow

      As for sitting in the one position....dont know if its the scoliosis or the osteo arthritis but I'm the same.

      I hope you managed to enjoy your holiday

      Love

      Eileen

  • suzyq13
    suzyq13 BizzieIzzie

    Posted

    Hi,  I had the surgery in 1994 and it was the best decision I ever made.  I was 17 when I had the surgery.  I will tell you that the surgery is long and recovery takes time, but I am so much more confident and I get a lot of attention from my scar.  I stand up very straight and have been told I have excellent posture many times over the last 20 years. Sometimes I will get a mild ache in my shoulder blade or my lower back after standing all day, but I think that anyone would have an aching back after that. I have had no problems at all, have two children and a my clothes fit great.  Make sure that your doctor is the best.  Mine was, at least at the time.
    • BizzieIzzie
      BizzieIzzie suzyq13

      Posted

      Thank you so much, this has really reassured me and I am now seriously considering surgery! I am in the process of going private (as I am in the UK, so I am no longer on the free NHS) to ensure that I get the best medical attention and best surgeon possible. Your message has really given me some reassurance and has given me a lot to consider!! Thanks again,

      Izzie

  • ann04920
    ann04920 BizzieIzzie

    Posted

    Hi Bizzeilzzie, I was diagnosed with s shaped (double curve) scoliosis aged 13. I had the operation. My treatment involved wearing a Milwaukee brace, then traction, then fusion of the spine and insertion of 2 rods. I was not really given a choice of whether I wanted the op back then - I think they thought I was too young to decide for myself and I'm glad that decision was taken away from me. I am 55 now and have never regretted having it done. I became a nurse, and have 3 sons (by caesarean). I have not had any problems, except until recently when I had to have one rod removed.

    Obviously everyone had different experiences and it may not be right for you but I wanted to share my experience with you. And I don't want to think about what my spine would look like now if I hadn't had the op.

    Best of luck whatever you decide.

    • suzyq13
      suzyq13 ann04920

      Posted

      How bad was the surgery to have a rod removed?  I have had mine for 20 years and have no problems.  I am just curious... just in case smile  Thanks!
    • ann04920
      ann04920 suzyq13

      Posted

      It was the lower rod (lower thoracic/sacral) that was removed and it involved a two night stay in hospital. Uncomfortable the first night, as any surgery is, but it wasn't at all bad and the surgeon actually tidied up the scar, which I'd had since the original op to have the rods put in in 1972, and made it look much better.

      The rod was removed not because there was anything wrong with it and it was still attached to the spine but I had developed an infection somewhere in my lower back which didn't clear up after a few months and the surgeon said metalwork can sometimes be a focal point for infection. The other rod is still in and has been there for 42 years.

      Hope that helps. 

    • suzyq13
      suzyq13 ann04920

      Posted

      Thanks!  Glad it wasn't as intensive as the original surgery.  For me was 8 hours and 10 days in the hospital.
    • ann04920
      ann04920 suzyq13

      Posted

      No, it was nothing like that Suzy. And with luck, you won't ever need to have them removed.
    • BizzieIzzie
      BizzieIzzie ann04920

      Posted

      thank you so much ann, the fact that you are happy with the operation has calmed me a bit! I am going back to the doctors next week, so I will discuss it with him some more then! Izzie x
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