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

  1. #61
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    Jan 1970
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    Edmond,OK USA
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    Oh Mark, I am so thrilled for you. I hoped that you would have a positive appointment. A doctor that listens - amazing! You deserve someone good. Congratulations and what's next and when?
    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.

  2. #62
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    Jan 1970
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    South Shields via Bradford
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    Just have to wait for the consultants appointment letter to land on the door mat. Hopefully it won't be too long in coming
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

  3. #63
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    Jan 1970
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    Fab news Mark!!

    I also want to know how your general health is these days. I agree with Jean (I can't think of a time I haven't agreed with Jean BTW) you need to be in the best health possible so please be sure to take care of yourself.

    Just know we'll be with you every inch of every step of the way.



    Lucy

  4. #64
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    Jan 1970
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    South Shields via Bradford
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    Hi Lucy, generally my health is good, got a few issues i need to get right with my head

    Thanks for the support you and everyone else has given me it is truly appreciated

    You take care of yourself

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


    Mark's a groovin an a movin

  5. #65
    Join Date
    Jan 1970
    Location
    Salisbury, UK
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    Mark, I've been a bit preoccupied the last week or two, and I'm only slowly catching up with SSo, so I'm just getting around to responding to this thread... but YAY! I'm so glad to hear you're getting evaluated to see what your options are! I hope you get good news. Best of luck. You deserve it.
    congenital scoliosis, thoracic fusion without instrumentation in 1974 (age 11mos), re-operated in 1975 (age 17mo.s) ~ lung volume 25-30%

  6. #66
    Join Date
    Jan 1970
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    209

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    That's good news about the GP - supportive ones are hard to find - I sometimes feel the battle begins the moment you sit in front of them. With his support I'm sure the referral process will run smoothly.

    Best of luck.

  7. #67
    Join Date
    Jan 1970
    Location
    Edmond,OK USA
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    Mark, Don't mess too much with that head. I like your sometimes wonky sense of humor.
    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. #68
    Join Date
    Jan 1970
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    South Shields via Bradford
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    Ahh jean you hurt me, you mean my humour is only funny sometimes
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

  9. #69
    Join Date
    Jan 1970
    Location
    Edmond,OK USA
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    No, no, no Mark, I love your humor all the time - it's just that it's only wonky some times so only us real wonkies get it other times it's plain old fall on the floor, laughing out loud funnny that any one would get. You know Mark we have to be careful. We wouldn't want anyone else to know how twisted humor can get!
    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.

  10. #70
    Join Date
    Jan 1970
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    Your right Jean, Twisted brothers and sisters unite
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

  11. #71
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    Jan 1970
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    Newbury, Berkshire
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    Yay! I'm so pleased you're finally being referred! Well done for going to your GP and I really hope the consultant helps you out. You really deserve it!

    Sending you love and
    Born 1981 with Spina Bifida Myelomeningocele. Surgery to close lesion at birth. Anterior fusion T11-L5 aged 12. Laminectomy June 06. Posterior fusion with instrumenation T8-T11. Degenerative Disc C4/C5

    Under the care of Jeremy Fairbank.

  12. #72
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    Jan 1970
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    South Shields via Bradford
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    Thanks Alison, and how are you i hope everything is going well in your life and your getting back to some normallity after your surgery

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


    Mark's a groovin an a movin

  13. #73
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    Jan 1970
    Location
    Guildford
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    Mark!

    Any news? I am dying to hear when you've got an appointment through. You are such a brave guy. I love ya dude!

    I know my scoliosis wasn't nearly as bad as your kyphosis but I was always too embarased to take my top off in the changing room in sports because I had these deformities (Scoliosis AND Sternum deformity where your chest is sunken - BADLY) I was bullied in school and I think that's part of the reason I became depressed and so stressed. I felt like, a freak, just hated myself for being so gross and just wished I would be physically normal and so then I would be able to be mentally normal, y'know.

    I had the Scoliosis operated on in 2006 and the Pectus deformity operated on 31st Jan this year (still in healing period). I am extremely pleased with my results. I am lucky to have had such amazingly understanding doctors. I wish you all the best in that too. I am sure your specialist will be willing to help you. You deserve it! You mean a lot to us here on SSo, don't forget that.
    If you ever need/want to, then just drop me a PM and we'll have a natter.

    Let us know *hugs*xxx

    Lyssie

  14. #74
    Join Date
    Jan 1970
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    169

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    Thats brill news mark, hope your appointment with consultant goes well. Cant wait to see what he has to say,


    Take care

    Sara
    x

  15. #75
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    Jan 1970
    Location
    Newcastle under Lyme, Staffs
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    Hi Mark hope the appointment comes through soon enough & the doc is as helpful as the gp was for referring you .

    Thanks for posting the pics & it shows how the kyphosis is compared to the scoliosis. I still will not put mine on though, I would, but the scars just to nasty on my curve from my kyphosis op for me to want to put on it might scare someone :-o .

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