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Thread: congenital scoliosis

  1. #16
    Join Date
    Aug 2005
    Location
    S. Jersey
    Posts
    16
    My son Billy has congenital scoliosis (fusion T11- sacrum at 6 years old) and there is no one else in our family with it. Usually it is idiopathic scoliosis that runs in families. The only time that congenital scoliosis is hereditary is if it is part of a genetic syndrome like Klippel Feil or something like that. Billy has VACTERLS Association, which features congenital scoliosis as a component, but it is not hereditary.
    Connie - Mom to Billy 5
    (CRS/VACTERLS incl. tethered cord, IA, single kidney, hemisacrum, levoscoliosis with hemivertebrae (fusion T11 to S2/hips 8/06), extra left rib, hypospadius, hypoplastic left leg w/clubfoot and 4.5cm length discrepancy,GI issues) conni60640@aol.com, http://members.tripod.com/conni60640-ivil/
    TC support group http://health.groups.yahoo.com/group/LMC-TCS/
    Congenital scoliosis support group - http://health.groups.yahoo.com/group...liosisSupport/

  2. #17
    Join Date
    Sep 2006
    Location
    USA
    Posts
    75
    Thankfully, I do not have that type of scoliosis. I just have idiopathic, but my curves have progressed and I now have a curve in my middle back that is 90 degrees. I'm sorry to hear that you are in a lot of pain. I have pain in my back every single day and, because of that pain, I cannot stand, shop, etc. for more than an hour. I use yoga to stretch the muscles and relieve myself of the pain.

  3. #18
    Join Date
    Aug 2006
    Posts
    5

    Klippel Feil

    I was told in 2000 that I have Klippel feil syndrome. My brother had spina bfida, however he passed away when he was a baby.

  4. #19
    scoliosisguy Guest
    Quote Originally Posted by branilla
    I suffer from extreme pain and spasms. I've never had surgery but use a lot of other treatments for the pain like tens unit, pain medication, icy hot, heating pad, anti-spasm medication, use a lumbar role, limit my daily activities, stretching my legs, light exercising, etc. I have hemi & block vertebrae in 3 locations of my spine, a twist at the top, ribs fused to my spine, uneven hip bones, and live in excruciating pain. Surgery is never an option for me, altough if it was I would consider it. I want to share my experiences and daily problems that I have with others who are like me because it seems sometimes that I am the only one who suffers from this deforming condition. I found this forum while searching for help for adult congenital scoliosis. But I think it would be great to talk to others who experience that pain and difficulties with life as I have had to. I didn't actually go through and read all of the responses before me, however, I would like to just jump in and talk with anyone who can relate to me and my horrible pain.

    Does your tens unit bring some relief?

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