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Thread: klippel-feil syndrome

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  1. #1
    Join Date
    Dec 2006
    Posts
    5

    Unhappy klippel-feil syndrome

    hi,
    i found out i had it this year. too late for me. i had a very physical job for 5 years. now the docs say i have the spine of a 93 year old and i am only 39. since my neck fusion i have gotten worse. i wish i had not had it. my life is very limited and i lost my job in october. i now live with family which for me is very bad. 2006 was the worst year of my life. i dont celebrate new years because it does not get better. if anyone asked me now i would say dont have the neck fusion done. i haven't been able to have another mri but i suspect my spine is more fused than ever. i was in and out of fords hospital in detroit as a kid and they never caught it so i didnt get treatment, not even bracing. i would not suggest anyone go there unless its gotten better. i called the university of michigan hospital and the syndrome isnt even in their database? it scares me to be here because every doc i see has to look it up. the one i got stuck seeing was scared to touch me. he said i was the most disabled he had ever seen. i just wanted to work and make my own way in life
    laura

  2. #2
    Join Date
    Jan 2007
    Posts
    65

    Wow.

    Laura,

    Wow. Losing your lifelong plans is about the hardest slap in the face I can think of. My heart and prayers go out to you and I hope you can find some peace and comfort, though there is precious little of that in this cruel world to begin with.

    I certainly sympathize with you regarding rare and little known syndromes. My wife and my son each have a different very rare syndrome. But one thing I've learned over the years is that diagnoses (we've had ours changed many times) are nothing more than labels for insurance companies. No matter what they call it, you still have to learn to live with the effects, and I'm here to reassure you that you can learn to live with them. Maybe you will have to make some major adjustments to how you planned to live, but you can still be a valuable contributing member of society, just in a different way than you had planned. So take some time to grieve for your lost former life, and then make a plan for your new life and its new and different challenges. After all, you wouldn't really want a life free from hardship and challenge would you?

    Again, you have my sympathy and prayers.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

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