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Thread: Pictures of my back, the psychological and physical pain of living with kyphosis

  1. #16
    Join Date
    Jan 1970
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    Weird Wiltshire
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    The other person that has to be worth considering is Mr Grevitt, considering what a marvellous surgery he did for John. Just don't be prepared to go with the postcode lottery again - if your GP won't refer you to someone who isn't local, then pay to go private, it's worth it to see the right person. Also, you can ask for a complete list of hospitals that they are allowed to immediately refer you to for orthopaedic treatment from your GP surgery manager. That would allow you to check who is where and know whether there is anyone local worth seeing (for example, Mr Cole would have been worth seeing wherever he was, when he moved on from QMC - you never know when someone really good may have moved to your local to essentially found a new department, or upgrade the existing one )
    Diagnosed at 15 with 50 curve, but probably juvenile IS. Fused in kyphosis (by non-specialised ortho) with a/p surgery T10-L2 @ 21, posterior only revision surgery to correct kyphosis @ 29. Now 38 with further revision surgery and extension of fusion to sacrum required to correct residual kyphosis, restore lordosis and address spinal stenosis.

  2. #17
    Join Date
    Jan 1970
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    Sheffield, UK
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    Mr Cole moved from QMC to Sheffield and now splits his time between the Northern General (where I had my surgery) and the Children's Hospital in Sheffield. He also has a website at:

    www.sheffieldorthopaedics.com (still under revision at the moment)

    where you can e-mail him to discuss your options. He's a very straight-talking, pleasant guy, I'm certain he wouldn't just fob you off.

    I can understand your reluctance to be out-of-action for a while when it's your sporting activities that are helping to keep you sane, but I think you need to look at the bigger picture. Without treatment, a few years down the line you may be unable to carry on at the level you do now. Also, don't underestimate the impact that a negative self-image can have on your physical and mental well-being. I did, and I'm still astonished at the difference it has made to me.

    You owe it to yourself to look into your options, it doesn't mean you have to choose the surgical route, even if it's offered.

    Take care Mark.

    Gilly xx
    Me, a Mod? Nah ... I'll always be a rocker

  3. #18
    Join Date
    Jan 1970
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    Salisbury, UK
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    4,482

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    Mark, thank you for posting these pictures of your back. I know how much courage it took. And I feel guilty for continuing to not have the courage to do the same.
    congenital scoliosis, thoracic fusion without instrumentation in 1974 (age 11mos), re-operated in 1975 (age 17mo.s) ~ lung volume 25-30%

  4. #19
    Join Date
    Jan 1970
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    South Shields via Bradford
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    Thanks for your kind words and taking the time to have a look at the pictures.

    If it only stops one parent from not pushing and seeking help and not taking no for an answer at the earliest time possible time then it is well worth the heartache it took to post them.

    Any parents looking at these pictures all i can say is this what is what your child may look like 20 years down the line.

    I'm no preacher and i wouldn't presume to tell anyone what to do all i am saying is don't take no for an answer, push, ask to be reffered somewhere else.

    It did take a lot out of me posting these images. I read so many posts on this site about hating to catch glimses of themselves in side profile. I am the same, its only through coming to support sites like this one that you can relate to others and know that your not the only one out there looking like you do and the stories you have to tell are not unique theres others who been through the same.

    I thought for 20 years i was the only one who looked like i do

    mark
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

  5. #20
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    Me, a Mod? Nah ... I'll always be a rocker

  6. #21
    Join Date
    Jan 1970
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    Salisbury, UK
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    Mark, I'm not the hugging type, but... *HUG* I understand exactly how you feel. SSO is a wonderful place. Makes me feel less alone and less "different".
    congenital scoliosis, thoracic fusion without instrumentation in 1974 (age 11mos), re-operated in 1975 (age 17mo.s) ~ lung volume 25-30%

  7. #22
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    Jan 1970
    Location
    CA
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    Im sorry mark, look on the bright side, we are all here together, for support



  8. #23
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    Jan 1970
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    289

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    Originally posted by mark@Jan 17 2008, 10:52 PM

    I thought for 20 years i was the only one who looked like i do

    You know, before this place - I thought the exact same thing for a good 10 years of my life. You're not alone - and you're not the only one with a big curve. You owe it to yourself to see a specialist. A lot of people here have helped me out in my short time here, including yourself.

    The way I see it, don't focus on the past - focus on the future.

  9. #24
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    Jan 1970
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    glasgow
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    markey baby u need 2 get seen b4 it duz somefink that cant be un dun and i no a man that is brillent mr harrison he opd on me and my curve was 101 every 1 is gunna say o my surgens the best ect but my case file was past and past mr h was the olny 1 that sed i will have a go he was the only 1 brave enuf

    please mark if not for ur self then for ur lil baby girl

    luv n huggies
    hey guys am christine am 25 have 2 kidz
    my surgeon was mr harrision at rhop
    curve was 13 a year after surgery now 3 years its at 30

  10. #25
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    Jan 1970
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    glasgow
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    wot i looked like b4

    x ray 101 degrese

    wot i look like now

    my new x ray

    i no it nothin compared 2 u babe but please
    hey guys am christine am 25 have 2 kidz
    my surgeon was mr harrision at rhop
    curve was 13 a year after surgery now 3 years its at 30

  11. #26
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    Oh my, Christine... I'd never seen your before & after pics before. You got an incredible correction, didn't you? *envy* I hope you are as pleased with the results pain-wise as with the cosmetic results!
    congenital scoliosis, thoracic fusion without instrumentation in 1974 (age 11mos), re-operated in 1975 (age 17mo.s) ~ lung volume 25-30%

  12. #27
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    Jan 1970
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    glasgow
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    yes and no
    hey guys am christine am 25 have 2 kidz
    my surgeon was mr harrision at rhop
    curve was 13 a year after surgery now 3 years its at 30

  13. #28
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    Hrm... no? It's only 3 months since your surgery, so hopefully you're just not recovered yet and that's what you're feeling. I do hope you feel as good as you look soon, though.
    congenital scoliosis, thoracic fusion without instrumentation in 1974 (age 11mos), re-operated in 1975 (age 17mo.s) ~ lung volume 25-30%

  14. #29
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    South Shields via Bradford
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    Moved from the kyphosis forum to the general to let people know what happens when curves get left to grow. My only wish is that parents will look at these pictures and dont take no for an answer

    mark
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

  15. #30
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    Please, please explore all options available to you
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

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