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Thread: Central Core Disease + Scoli

  1. #1
    Join Date
    Apr 2006
    Posts
    227

    Central Core Disease + Scoli

    Has anyone here ever been tested for Central Core Disease (CCD)? My surgeon took a muscle biopsy during surgery for a neuromuscular specialist and I have JUST been diagnosed with CCD (a form of muscular dystrophy). Because one of the main symptoms is scoliosis, I just wondered if anyone here has been tested or what they have learned? Totally shocked and a bit sickened.

    Always Smilin'
    Colleen

    1982 fused T2-L1
    pre op 45 - post op 33 (left thoracic)
    pre op 53 - post op 18 (right thoracic)

    recheck 2006
    right thoracic 57
    lower lumbar 34

    surgical revision April 28,2009
    revision T3-L1; new fusion L1-L4
    unsure of degrees at this point

  2. #2
    Join Date
    Nov 2008
    Location
    Greenfield, WI
    Posts
    414
    Oh no Colleen!! Im so sorry to hear this!! What exactly does this mean for you? Im not familiar w/it......awww.....gosh, I wish you didnt get bad news...Im really sorry. Take care & we will talk soon! Hang in there...


    Lynn
    Lynn -30.... something
    DxD @ 8 yrs old: 10* curve-no brace-no nothin'!
    At age 26: Thorasic 48*/Lumbar 50*
    At age 34: Thorasic 58*/Lumbar 60*
    Posterior T5-L4 Fusion Jan 14th, 2009 w/Dr Tribus
    UW Madison, WI Hospital
    **AFTER: less than 10* Thorasic/15* Lumbar**

  3. #3
    Join Date
    Apr 2006
    Posts
    227
    Thanks Lynn...I'm not sure that it means anything too terrible but still need to talk with the specialist as I was too dumbfounded to ask intelligent questions at the time. My family doesn't really want to talk about it at all...ignore it and it will go away????Guess I better hold on to my job tight and my insurance as i doubt too many others would insure me I'll let you know if I hear more...will talk soon.
    Colleen

    Always Smilin'
    Colleen

    1982 fused T2-L1
    pre op 45 - post op 33 (left thoracic)
    pre op 53 - post op 18 (right thoracic)

    recheck 2006
    right thoracic 57
    lower lumbar 34

    surgical revision April 28,2009
    revision T3-L1; new fusion L1-L4
    unsure of degrees at this point

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