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Thread: i'm not alone

  1. #1
    Join Date
    Feb 2013
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    Cheshire
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    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
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    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
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    16,221

    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
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    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
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    Jan 1970
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    Sheffield, UK
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    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
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    6,049

    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).

  7. #7
    Join Date
    Aug 2012
    Location
    colorado
    Posts
    137

    Default Re: i'm not alone

    Hey chris welcome to the site. I had kyphosis with a 86 degree curve before my surgery. It is now about forty and im still recovering. My work was very supportive about me taking time off from work although they were surprised when I said I needed 3 months off. I probably won't be going back untill im 6 months post op. The psychological part is the worst, and even tho im still in pain I love my new posture. P.m. me with any questions.

    Mathias
    24,m fused oct 2nd 2012 t-2 through l-3.

  8. #8
    Join Date
    Feb 2013
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    Cheshire
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    Default Re: i'm not alone

    Thanks for your responses. Do you have any idea what the threshold for surgery is on the nhs?

  9. #9
    Join Date
    Jan 1970
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    South Shields via Bradford
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    14,027

    Default Re: i'm not alone

    Hi and welcome to sso

    Each surgeon has their own take on the guidelines

    Generally speaking upto 40 degrees is normal

    40 degrees to 80 degrees is conservative treatment

    90 degrees and above is generally surgery

    that is very general and loose, some surgeons have been known to operate at 60 or 70 degrees others won't operate on curves upto 100 degrees

    It all depends on a lot of factors including pain levels, psycological, appearence, mental health and a whole multitude of others

    I hope that makes sense

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


    Mark's a groovin an a movin

  10. #10
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    Feb 2013
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    Cheshire
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    Default Re: i'm not alone

    Thanks mark for the information. I need to get measured then I'll have a better idea.

  11. #11
    Join Date
    Apr 2012
    Location
    Peoria, Arizona
    Posts
    243

    Default Re: i'm not alone

    I am sorry to hear about your pain and struggles. I am 28 and had surgery last June to correct an 88 degree curve, which is still roughly around 45-50 degrees. I am very happy I got the surgery.

    I had the surgery June 28th and was back to work about 5 weeks later, roughly about July 29th. I am a school teacher, so that is when I set up my classroom. Students started about a week later.

    The only days I have taken off so far are the days I have training within my employer. I have yet to take a personal day or sick day. I am feeling great and hope I can continue to get better by the day.

    Do you know what your curve was 20 years ago?

    Talk to you soon.



    -Storm

  12. #12
    Join Date
    Jan 1970
    Location
    Edmond,OK USA
    Posts
    6,567

    Default Re: i'm not alone

    Hello, I just wanted to chime in to say Welcome to SSO. AND there are lots more like us -isn't it great to not be alone?
    I am 61 years old and the resident SSO fossil. I live in Oklahoma,USA with my husband Allen. We have one daughter Jae and she has three kids.Our grandkids are: Aidan is8. He's the one pictured in my current avatar. Jenna Jean is 7 and Ryan Allen is just 4 It's full time chaos here! I was diagnosed in 1965 at 14 years with Kyphoscoliosis and 2 curves measuring 68 and 63 degrees. My last measurements were in 2004 at 155, 88 and 55+ degrees. I have never had surgery or bracing so I now am on full time oxygen and use a Non Invasive Ventilator at night. at night.

  13. #13
    Join Date
    Jul 2009
    Location
    Upstate New York
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    180

    Default Re: i'm not alone

    My curve was high 70s. I'm the Wikipedia kyphosis image. My corrected curve is something like 37. So you can get an idea of the curve...interestingly I didn't grow too much but this is because I had a low curve and I had a big lordosis curve before surgery. So mine was less cosmetic and more pain. Before surgery it was hard to notice unless I was bending...however the pain was bad. However now I am pain free. Last time I took anything for pain was literally months ago. I work out 5x a week...big boy stuff, too...free weights and all machines with 150lb+ resistance and I have no issues. Just have to be careful. In my opinion the only real thing I minimize is running. Though you can do it...it doesn't seem like the best idea..however running isn't a very good idea for anyone to be honest. Resistance is way better for the body to learn how to handle physical challenge. Anyway get ready for ups and downs...the recovery is not fun but you deal. I lost a ton of weight following surgery. You will be tiree..as im typing this i can remember the fatigue!! But im convinced my mental attitude combined with my extremely regimented workout routine is the reason my back is doing so well. I will take a picture of my back on my 2 year date. I think you will be very impressed. Let me know if you have any questions!
    "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

  14. #14
    Join Date
    Jul 2012
    Location
    Oklahoma, USA
    Posts
    553

    Default Re: i'm not alone

    My kyphosis was only 75 degrees, but there is a lower threshold for kyphotic curves that are abnormally low in the thoracic/upper lumbar spine, as mine (and Dave's, I believe) were.

    You should definitely have your curve measured. Chances are that if people besides yourself are noticing something wrong and you've shrunk an inch, you might be into what's considered "surgical candidate" territory now.

    Also, here's a link to all my spine-related images I've put on these forums. It can give you a visual idea of how things look before and after surgery (at least for me): http://s1263.beta.photobucket.com/user/dkentok/library/
    22 year old male from Oklahoma, USA
    T4-L2 fusion completed November 5th, 2012
    Pre-op: Thoracolumbar Scheuermann's kyphosis (75) and left thoracolumbar scoliosis (25)
    Post-op: Normal kyphosis (39) and scoliosis too small to bother measuring https://www.facebook.com/dkentworth

  15. #15
    Join Date
    Feb 2013
    Location
    Cheshire
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    19

    Default Re: i'm not alone

    Hi guys. Nice to meet you. Storm, I can't remember what I measured 20 years ago, it was over 50 but certainly was below 70, I know that. My first specialist said it was relatively mild compared to some of the patients he saw..IMy main problem as a teenager was dealing with the way others reacted to it rather than the physical effects., I didn't handle all the negative comments and became very withdrawn, lost confidence. In england if you're male and ginger then you're guaranteed to be given a hard time at school, I think kids think having ginger hair is like some kind of disease, pretty pathetic really, and when you combined that with my back then I was always going to be targetted. I started to see the world through *hit coloured glasses instead of rose tinted spectacles as I know I should.I'll post a picture later so you can all see how it looks now. I haven't looked at my spine in a long time so I don't know how bad it actually is, hopefully you can let me know. I also get some pain in my neck and since I was a teenager I've had frequent muscle spasms in my legs that often interrupt my sleep, not sure if this is related. In 2010 and 2011 I had multiple abscesses on and off for 9 months covering my arms, legs, stomach and butt. I had to have surgery twice and contracted mrsa while in hospital the second time. I missed six weeks of work and I hate taking even a day off. Has anyone else had this problem? Doctors couldn't tell me why it was happening, my best guess is it was stress related.

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