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what should i do?

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  • what should i do?

    hi clare, i'm from england, i'm 16 and have a double curve i think the degrees are 70degrees and 60-70degrees. I have a pending appointment with my doctor very soon. The thing is, I thought that having degrees as high as mine would require surgery and i thought it was quite severe. But my doctor doesn't sound as though he's too concerned about my curves being so high unlike me.
    Also if surhery is an option for me, how do you make the decision? I think i would want the surgery mainly for cosmetic reasons, because i have a bad body image because of scoliosis, and i know that cosmetic reasons aren't the primary thing to be concerned with in the docotors eyes, but im concerned about it. Also i would just want to stop any more progression, and also even if it's only progressing a bit each year, what will it be lik when i'm 30 years old? so i figure it would just be best to get it out the way, especially because i'm young and so there would be less complications if i had it now. On the other hand, i don't know if i would want the surgery because it's so major and frightening to think about going through with such a major thing.
    Another problem is, I haven't spoken to my parents at all about any of these feelings/concerns i have about scoliosis and any possiblity of surgery. The only person i ever speak to, and not in this much detail, is my best friend. An dof course she won't entirely understnd as only ppl with scoliosis would, but she listens. I just can't bring mself to talk about this to my parents because i think i'll probably just break down and cry about it and i really don't want that. And not a day goes by that i don't think about scoliosis and how i hate the way it makes me look. I'm happy with aspects of my figure but mostly i look in the mirror and i always just see scoliosis.

    wow i wrote a lot there. Sorry about that, but as i said i can't talk to anyone else about this so i guess all my feelings have just come out now.

    can anyone offer any advice or comments about anything i've said? i would really apreciate it,
    thanks , Clare -x-

  • #2
    Hi Clare...

    If your curves are truly in the 60-70 degree range, you would probably be strongly encouraged to have surgery, at least here in the U.S. Research has shown that curves over 50 degrees tend to progress about 1-2 degrees a year. That doesn't seem like all that much, but you probably have another 70+ years to live!

    Perhaps you could get in touch with the Scoliosis Association of the UK:

    http://www.sauk.org.uk/

    they might be able to help you navigate the medical system.

    Good luck!

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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    • #3
      which hospital are you being treated at, claire?

      i'm from the UK and have had surgery at RNOH, stanmore (which is at the very edge of northwest london)
      diagnosed aged 14 (2001)
      braced from july 2001 to february 2003 to hold curves
      fused T11-L3 on july 16th 2005 (aged 18)
      Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
      scoliosis support forum

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      • #4
        thanks for both of the replies.
        I'm seeing a speacialist at St.James' hospital it's in Leeds, which is in Yorkshire. What condition was your back in when you had surgery? the degrees? and did u have one or two curves if you don't mind my asking? it's just hard to find someone from the uk to ask these things.

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        • #5
          well you're already a member of SSO, there are loads of brits there!

          i'd strongly recommend a second opinion if you're worried, i'm not sure exactly how much of a specialist centre St James's is. the two absolute best places in the country are Stanmore and QMC in nottingham (which is obviously closer to you)

          when i had surgery i had two curves, but i only had my lumbar one operated on (at 52 degrees it was the larger of them) and now even on an xray my curves are barely visible) this is a comparison of my pre and post op xrays

          as an aside: i'm moving to leeds at the end of the year to start a degree at LMU
          diagnosed aged 14 (2001)
          braced from july 2001 to february 2003 to hold curves
          fused T11-L3 on july 16th 2005 (aged 18)
          Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
          scoliosis support forum

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          • #6
            hmmm i thought st. james' was supposed to be quite good. Can i ask, what they cosmetic result was of your surgery? Because i also have a double surve and i read that they are the hardest to correct.

            have fun moving to leeds!

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            • #7
              also your correction looks really good

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              • #8
                hurrah now i can really show off this is what my back looks like now and that's doing the bend over test, which is supposed to accentuate a scoliosis

                i honestly don't know the reputation of your hospital, i don't know anyone else who has been treated there. you ideally want to find out how many scoliosis patients your surgeon has. my surgeon ONLY does scoliosis surgery, nothing else. in the summer, he does probably twelve scoli surgeries a week across three theatre sessions. if your surgeon is only operating on two patients a week throughout the year, the odds are scoliosis isn't their specialty and they're more of a general spinal surgeon and the difference between the two can be quite significant.
                diagnosed aged 14 (2001)
                braced from july 2001 to february 2003 to hold curves
                fused T11-L3 on july 16th 2005 (aged 18)
                Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
                scoliosis support forum

                Comment


                • #9
                  WOW your back looks really great! did you have the thoroplasty to reduce your rib hump too? how important was your cosmetic appearance to you when you had the surgery? are you happy now? is your waist really even too?

                  sorry about all the questions! just helps to talk to peole who have already been through it.

                  -x-

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                  • #10
                    also yeah i should check out my doctor

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                    • #11
                      From what I've read, it seems as if surgery is a slam dunk. Waiting and not having surgery could result an increasing curve, and possible nerve damage. Along with that would be compromised lung functions as well as pain. The fact that you are going to see a specialist is great. Hey, if you can't talk to your parents, who can you talk to? The only one who knows you better than your parents, is yourself. Your physical health is far more significant that your physical appearance. You need to take a "so what if I look different" attitude. What you look like doesn't take away from who you are in your heart and head. I know your body image is important to you now, but later on, you will be able to put it into a different perspective.

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                      • #12
                        i seriously don't mind the questions, it's fine.

                        no, no thoracoplasty for me, i was lucky. i didn't have a rib hump, but i had pretty significant rotation in my spine which caused some of the vertebrae to stick out at one side in the middle of my back and as you can see that's all gone.

                        i'm really pleased with my shape. i'm completely symmetrical in my waist now and my right hip used to jut forward again due to rotation, but that's been pulled into line. the cosmetic side was getting me down from about a year before i had surgery (i was diagnosed just over 3 years before that and initially it didn't bother me, plus i never really paused to think about it)


                        i think The Slice has a point - a surgery this major can't be entirely about the way you look, it's not like cosmetic surgeries because the recovery is quite a long process, but how you look does come into it. i think if there's a chance you can look even a little better and that will make you happier, it's something which gets you through your recovery maybe. i don't know, i think i stopped making sense back there!
                        diagnosed aged 14 (2001)
                        braced from july 2001 to february 2003 to hold curves
                        fused T11-L3 on july 16th 2005 (aged 18)
                        Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
                        scoliosis support forum

                        Comment


                        • #13
                          lol no no thats a big help thanks, i just want to feel like you, you know being happy with my shape, and The Slice i really don't think i would change my opinion later on in life beause i have to live with the way i look everyday and i don't think i could manage doing it for so long and being sooo unhappy with my appearance. I know physical appearance shouldn't be the main thing but it is important to me, but i do just want any progression to stop so it can't get any worse later on in life. I should be seeing my doctor this month so i'll be seeing if any progression has occured. The thing is my curves are already so high that i'm scared of any progression at all. I've had 2 dreams recently about scoliosis, just shows how much i think about it but i always wake up and obviously i haven't had surgery and i'm still unhappy with my shape

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                          • #14
                            Originally posted by rincotato
                            WOW your back looks really great! did you have the thoroplasty to reduce your rib hump too? how important was your cosmetic appearance to you when you had the surgery? are you happy now? is your waist really even too?

                            sorry about all the questions! just helps to talk to peole who have already been through it.

                            -x-

                            iiya ma name is also clare nd i am also 16 frm england and i went to st james for my operation and prof. Dixon is a gd surgeon apparently he travels all over the world to help others ahave a better understandin bout scoli... but my op didnt go as well as i hoped anyway speak t me!! sportylass_845@hotmail.co.uk

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                            • #15
                              wow- your back looks great!! It's really encouraging to hear a story like yours!! Thanks for showing us that!!!!!!!!
                              Scoliosis for 8 years, Milwaukee, Providence & Boston braces. 35T 42L Dx'd with Chiari Malformation 8/06, decompression surgery + duraplasty 11/24/06.

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