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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

    You are all so lucky that you are young and that they will do the operation.

    They wont on me.....not because I'm 68biggrin but I've been told that after 30 years of age it doesnt have the same good effects that it has if you are a teenager or in your twenties

    Good luck to all of you

    Love

    Eileen

    • suzyq13
      suzyq13 eileen64__UK

      Posted

      When I had the surgery done in 1994 my surgeon told me that it is best to be done young because we heal better and faster.  I am glad I found this forum because I was doing some research on the rods and found so many sites claiming that the problems were associated with the rods were not worth getting them done.  I have had no problems and realized quickly how many sites are not reliable because some even called scoliosis a disease.  Ha!!
  • meggailey
    meggailey BizzieIzzie

    Posted

    I'm 16 and have the same problem as you. I have congenital scoliosis and a hospital which are really unhelpful. I was diagnosed when I was born, but as they've said there's nothing they can do untill I've stopped growing I've been left for 16 years with it getting worse. No brace offered; physio was pointless. I've been told there's nothing they can do until I've finished growing and I get nothing from them. I don't even get regular check ups, so in some ways despite the pain (believe me I know it's painful) they're doing their best but I know how it feels to be on the other end. Try going to your GP and ask for some prescribed painkillers, that's what I've done for the mean time.
    • BizzieIzzie
      BizzieIzzie meggailey

      Posted

      Hiya meg, and thanks for the painkillers advice! I have actually just made an appointment for my GP for just that, so your advice is brilliant for me to hear!! I am also switching doctor and hospital, to a private clinic as I am unhappy with the one I am currently with, maybe you could do the same, or something similar? A doctor should be someone that you trust! I get exactly what you mean with the waiting, it is so fustrating! If you ever need to talk I am right here smile

      Izzie xx

    • meggailey
      meggailey BizzieIzzie

      Posted

      I currently take naproxen 500mg and codiene phosphate 25mg which although they don't take the pain away, it's so much more bareable! 

      We're thinking about getting a second opinion from a different consultant, and if worst comes to worst then paying for the operation. 

      Each small step is a step closer to the goal, keep smiling. Your not alone xxx

  • PaulaWB
    PaulaWB BizzieIzzie

    Posted

    Hi Bizzielzzie

    My daughter is 15, and went back to see her consultant yesterday for her 6 monthly check.  At her last Appt in Feb, she had an xray and the consultant said it was approx 38 degree curve. Yesterday her xray showed it had increased to 45 degree. He has given her the option of surgery. Was quite a shock, as we were not expecting it to have increased so much so quickly, so she is now also in the same position as you  and must make the difficult decision whether to go for the operation or not. There are some great success stories, but its still a very scary decision to make. We are based in Ireland xx

    • BizzieIzzie
      BizzieIzzie PaulaWB

      Posted

      Thank you Paula, I am in a scarily similar situation now, after finding out my curve has increased quite rapidly - please make sure that you tell your daughter that she is not alone!! I am always here if either of you want to talk - the only advice I can really give you from my research is to ensure that your doctor knows what he is doing and it good at it - whether that is doing the actual operation or another option. All the luck in the world, Izzie xx
    • Mitzime
      Mitzime BizzieIzzie

      Posted

      Hey, BizzieIzzie. I was just wondering if you've decided whether or not to have surgery done and mention a few stuff. I am 15 and my curve is so large surgery is the best and only option. However, the surgeon still decided to put me in a brace even though i doesnt really work with prevention but to manage the pain, so you could request that to help manage your back pain. I can't wait to have my surgery done, not only would it improve my posture and curve but it will also mend the curve and stop any pain. so are you currently preparing of looking to have the surgery done aswell? smile 
    • Mitzime
      Mitzime

      Posted

      *or looking to have the surgery done xx
    • BizzieIzzie
      BizzieIzzie Mitzime

      Posted

      Hi Mitzime - to answer your question I went to a neurosurgeon today and have now been referred to a private specialist orthopedic surgeon as well as a pain management specialist - so yes I am looking to get the surgery done I think! It has been such a huge decision to make, and all your help have helped me make my decision and has let me see that I am not alone! I hope your surgery goes really well - keep my posted!! All my love, Izzie x
    • Mitzime
      Mitzime BizzieIzzie

      Posted

      Thank you BizzieIzzie, sorry for the late reply! I hope it all goes well for you too and you get much luck from your referral smile i was told my surgery would be done in mid-october so im just waiting now. To every single person with scoliosis, we just have to remember that it will all be sorted soon. Thank you for starting this post, I hope we can keep in touch smile x
    • BizzieIzzie
      BizzieIzzie Mitzime

      Posted

      Mitzime, I wish you all the luck in the world for your surgery, I really hope that it all goes brilliantly, and I'm sure that you'll be back up on your feet in no time! Feel free to message me at anytime if you ever need anything, anything at all! I really hope we keep in touch smile Izzie xx
  • kimball95
    kimball95 BizzieIzzie

    Posted

    Hey guys smile haven't been on in a while ... Forgot my password ahha ! 

    I have a date now and will be going for my surgery on the 10th November :D hope you are closer to getting there lizzie smile 

    Will keep you all updated on my progress in hospital and when I'm out again smile sign all the forms on the 14th oct to say I am having it smile xxxx

    • BizzieIzzie
      BizzieIzzie kimball95

      Posted

      That is amazing news Kimball! Congratulations on getting your date, and I hope it all goes really well for you - I'll be thinking of you on the 10th! Please keep me updated, and I hope we keep in touch smile Message me anytime if you ever need to smile Izzie xx
    • BizzieIzzie
      BizzieIzzie kimball95

      Posted

      I am going up to Lonodn to see a specialist there on Tuesday I think, so I'll keep you posted!! xxx
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