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Thread: i'm not alone

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  1. #1
    Join Date
    Feb 2013
    Location
    Cheshire
    Posts
    19

    Default i'm not alone

    I apologise if I go on a bit. So I'm not alone, there are others like me out there, I don't get out much! Twenty years ago I was diagnosed with kyphosis, twenty years ago I was told by a specialist that there was nothing that could be done, I was told that surgery was reserved for only the most extreme cases and I simply didn't qualify. I saw two other specialists a couple of years later and was told the same thing. Life at school sucked, I guess you all understand where I'm coming from, the smirks, the whispering when you enter a room, being labelled the school hunchback, humiliated by other kids on a daily basis who seem to see your condition as some kind of source of amusement. Swimming classes were the worst, you've nowhere to hide. I lost focus, lost direction. For me twenty years on, my kyphosis has progressed, I'm now 1 inch shorter than when I was 18, some days the pain is so bad when I get home all I want to do is lie down, other days I'm ok. The worst part for me is the psychological damage, it eats away at you day by day, self loathing, self pity, why me. Reading some of the stories on this site about those lucky ones who've had surgery I feel so happy for you genuinely. My ex wife was ashamed to be seen with me in public, didn't want me to meet her friends in case they laughed at her for marrying a man with my deformity. My second wife said my kyphosis is getting worse, her exact words were 'your spine looks horrible, disgusting', she tends to speak without thinking sometimes. I live in the uk. Has the policy of the nhs changed towards only performing surgery on extreme cases? I'm planning to go and see my gp try and ge t referred to a specialist but I don't know if I will be wasting my time. I feel like if I don't get it sorted now, my condition will. deteriorate and i won't be able to move forward with my life, it's holding me back. My other question is with regard to work, how did your employers react to you requesting to take an extended period off work? Chris

  2. #2
    Join Date
    Jul 2009
    Location
    Upstate New York
    Posts
    180

    Default Re: i'm not alone

    I had the surgery done. Im doing freakin' awesome!!!! life is great these days. I enjoy each day. PM me if you'd like to talk. Im sure you've seen my videos.

    David
    "Success is not final, failure is not fatal: it is the courage to continue that counts."
    -Sir Winston Churchill
    http://www.youtube.com/watch?v=7qMo_8uk7vw

  3. #3
    Join Date
    Jan 1970
    Location
    Sheffield, UK
    Posts
    16,218

    Default Re: i'm not alone

    Whereabouts in the UK are you Chris? We might be able to point you in the direction of surgeons who specialise in adult surgeries, since not all of them do. Oh, and welcome
    Me, a Mod? Nah ... I'll always be a rocker

  4. #4
    Join Date
    Feb 2013
    Location
    Cheshire
    Posts
    19

    Default Re: i'm not alone

    Hi david. Just watched your video, your spine looks so straight. I'm happy you're doing great. I need to get my curvature measured. I haven't seen a specialist in 15 years which was the last time I was x-rayed. If I'm honest I haven't looked at my back with my shirt off in probably ten years or more, I just can't bring myself to look as I know it's getting worse and I always make sure I avoid catching myself in mirors, kind of pathetic. Hi gilly. I'm living in cheshire right now. Nice to meet you.

  5. #5
    Join Date
    Jan 1970
    Location
    Sheffield, UK
    Posts
    16,218

    Default Re: i'm not alone

    Cheshire - I think your nearest specialist might be in Manchester, but you could check out the hospitals list by scrolling down on this link:

    http://www.scoliosis-support.org/showthread.php?t=7250
    Me, a Mod? Nah ... I'll always be a rocker

  6. #6
    Join Date
    Nov 2011
    Location
    Hertfordshire
    Posts
    6,047

    Default Re: i'm not alone

    Hiya Chris,
    You're right they're not alone and surgery is not for 'extreme' cases so to speak any more, it's for cases above a certain threshold with cases dealt with with discretion regarding pain and mental affect etc., It is the same for scoliosis, I just passed the boundary for surgery but due to my worsening pain and how much I hated my rib hump (I almost appeared to have kyphosis) I had the surgery exactly 3 months later - the NHS is a lot better.

    As Gilly said I'd put money on Manchester but you could always travel a bit to other hospitals.

    Tiff
    I'm Tiff, I'm 17, my consultant's Mr Gibson at RNOH Stanmore and I was diagnosed in November 2011 and I had my spinal fusion October 3rd 2012 and am now fused T2-T11 with amazing correction (60T/40L to 30T/40L).

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