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

  1. #166
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    Default Re: Pictures of my back

    Cheers bro, just under 3 days to go, can't seem to get my head round what i need to focus on, question wise
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

  2. #167
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    tonibunny is offline T Sr: Admin, Big Sister and Da Police!
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    Default Re: Pictures of my back

    Can we help you come up with a list of questions Mark?

  3. #168
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    Default Re: Pictures of my back

    Yes please if you can, it would be much appreciated thanks

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


    Mark's a groovin an a movin

  4. #169
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    tonibunny is offline T Sr: Admin, Big Sister and Da Police!
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    Default Re: Pictures of my back

    I don't know what you already know about your back, so some of these might be a bit redundant, but if I were you I'd start off by asking:

    - What is the degree of my curvature?
    - Is it likely to progress as I age?
    - What is the likely cause of my pain (neurological, muscle spasms etc)?
    - Is the pain likely to get worse, and is there a chance I might develop other problems because of this? If so, what sort of problems could these be?
    - I am very unhappy and depressed because of the way my back looks and it is seriously affecting my ability to enjoy life and function properly. Would it be possible to have medical treatment to make it look more cosmetically normal?

    If they say that surgery is a possibility, I'd ask:

    - How do I start the process to get onto a waiting list for surgery?
    - How long am I likely to be on a waiting list for?
    - Is there anything I can do to prepare myself for surgery to make sure I get the best possible outcome?
    - How much correction do you think I might be able to achieve?
    - How much of my spine would need to be fused?


    Hmmm I think that will do - you wouldn't want to overwhelm the poor consultant or get ahead of yourself. If anyone can think of anything else (I'm bound to have forgotten something really important!) then I'm sure they'll post. I'll be really surprised if the consultant says that you can't be helped though, seriously - look at all the chaps we've had here who have had severe kyphosis and who have had successful surgeries. Keep positive

  5. #170
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    Default Re: Pictures of my back

    Well time has come, tomorrows, getting closer, not close enough, too slow, can't seem to stop thinking, thinking too much, longing for the dark, can't sit down, can't stand up, can't read, all i can do is sit in front of this dam computer, glued to SSo, it's gonna be a long night,
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

  6. #171
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    Default Re: Pictures of my back

    Hang in there Mark, you're gonna be fine, try not to think about it too much. Though that's probably easier said than done. You'll be fine I promise xx

  7. #172
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    Default Re: Pictures of my back

    Mark, Take your flying monkeys pin with you. It's not necessarily for people that you will see. You need it to remember that those monkeys can come visit you if you chicken out - so keep going mister and take Ton's excellant list. Use your head. Fall apart on them if you need to. Trust me. They have seen it all before so no matter what talk until you are done getting answers! We will all be with you and those damn monkey's will be just outside the door.
    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.

  8. #173
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    Default Re: Pictures of my back

    i've been looking so long at these pictures, i almost belive that they're not real, weren't real i've been living so long with my back, all bent and twisted, whilst holding my breath, watching the world crash around my sad, misearble aching, hurting body,

    if i could stop the world and turn back the clock would i, no, probably not, not know, would have a while ago, the futures got be brighter, have you seen the changes, am i getting better, there's nothing in the world that i want more than to feel you deep in my heart, breaking apart the pictures of me, you make me feel like i'm whole again, got to be progress, hasn't it

    I used to think why can't i be you, why, why, why, your so perfect, why can't i be you, so why the f**k can't i be you, because its too good to be true, i'm me, why should i be you, thats what i got to think, yes, no inbetweens, no wanting, no wishing my life away, i feel old, feel so old sometimes it makes me want to cry, but i don't, much, anymore, i wanted to disapear, but i didn't did i, so theres got be something, hasn't there, i never walked away, sinking, always sinking, but never sank,
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

  9. #174
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    Default Re: Pictures of my back

    Mark,
    I have not read the complete thread, but your photos look exactly like my 16yo son. He is scheduled for surgery next month (aug 08). I am frightened, but have good feelings from the others who have posted.....many successes.

    I feel for you and your self-image struggles. My son is a competitive swimmer and one thing that 'we' all comment on is how comfortable he is in his own skin. We would not be seeking surgery except his doctor has determined that his curve will continue to progress unless his spine is fused. They will attempt to correct his kyphosis at the same time.

    Thinking of you.

    tb

  10. #175
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    Default Re: Pictures of my back

    Dear Guest, Please register and join our slighty wonky world. We are glad to have new members and ask your son to join in if feels like it. I just wanted to Welcome you.
    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.

  11. #176
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    Default Re: Pictures of my back

    Well, had some good news and some bad news, good news first, i got a date for the mri scan which is the 6th of August the bad new is when i phoned for a date with the surgeon, the next available appointment isn't until the 13th January next year, i was/am pretty nocked back by that, they said if the mri scan turned up something or there is a cancellation i might be able to see him or hear from sooner, don't know what i am going to do, wait i suppose but i fear that i may not be able to, it is going to do my head in having to wait almost 6 months to see him again
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

  12. #177
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    Default Re: Pictures of my back

    Quote Originally Posted by mark View Post
    Well, had some good news and some bad news, good news first, i got a date for the mri scan which is the 6th of August the bad new is when i phoned for a date with the surgeon, the next available appointment isn't until the 13th January next year, i was/am pretty nocked back by that, they said if the mri scan turned up something or there is a cancellation i might be able to see him or hear from sooner, don't know what i am going to do, wait i suppose but i fear that i may not be able to, it is going to do my head in having to wait almost 6 months to see him again
    wow - 6months sucks. Looks like I'll have to wait about a month to see my surgeon...but 6 months is crazy!

  13. #178
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    Default Re: Pictures of my back

    Wow Mark that's not good, I'm sorry to hear that it's a 6 month wait. Can you not phone back up and tell them to make you priority if someone cancels their appointment? Or is there not some sort of emergancy slots they could fit you into, you could ay you're in a lot of pain???

    (gosh) Sorry, I'm not very good at this, but I hope you get an appointment sorted out soon mate,

    Take it easy xx

  14. #179
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    Default Re: Pictures of my back

    No chance you can get to speak directly to your surgeon again?? He seemed to be the only person who actually understands you. Don't accept that without putting up some sort of a fight Mark, you know as well as we do that that isn't good enough.

  15. #180
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    Default Re: Pictures of my back

    The way i feel at the minute, i just want to give up, just want to die, burry me in an unmarked grave, somewhere unconsigrated, i will met you again, juust a few more years down the line
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

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