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Thread: I need answers, my son has congenital scoliosis with other ???

  1. #1
    Join Date
    Jan 2007
    Posts
    2

    Question I need answers, my son has congenital scoliosis with other ???

    I am the mother of a 15 year old boy who was diagnosed with congenital scoliosis and kyphosis at 1. He had surgery with fusions at 18 months old.
    He also had severe toe walking and had the botox injections and was casted several times nothing worked so he had to have surgery to lenghten his heel cords on both ankles at 6 years old.
    He then had severe claw toes and other foot deformities that led to casting again and eventually another surgery at 13. He had a procedure called Jones procedure to correct that. Which his toes still curle and he has pain.
    He now is in physical therapy because he has limited mobility in his lower extremities and has pain in his back. The PT said his lower extremities (tendons, muscles,ligaments) are severly tight and very limited. They asked if I was given any other diagnosis besides the scoliosis. The answer I have is no but I have been asking my self that for many years. I am told his curves are stable at about 35, 37, 42 and his spine for the most part is lined up ok.
    I need to know if any one else has any of these other issues with the scoliosis and what did they do to get answers. I need help!!!

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi,

    I don't know what to suggest, I just have more questions. Have they done a full MRI on Tim to rule out a tethered spinal cord? I'm assuming they have, but you didn't mention that. Toe-walking can be a symptom of a tethered cord. The brief description you give makes me have lots of questions. There is obviously more going on that "just" scoliosis. Scoliosis and kyphosis alone will not cause these problems. Scoliosis and/or kyphosis interferring with the function of the nerves in the spine could. Does he have a neurosurgeon he sees regularly? I'd be asking a lot of questions. Good luck and let us know what you find out.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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