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Thread: Newly diagnosed congenital scoliosis

  1. #1
    Join Date
    Jan 2010
    Posts
    1

    Newly diagnosed congenital scoliosis

    Hello everyone!! I'll just right down to it~~~I have 3 children who all have a form of scoliosis. When my oldest daughter was diagnosed they didn't recommend any treatment because the curve was so minimal. Then my second daughter was diagnosed and put in a brace for 2 years, progressed nicely and was told last month that she was through with treatment and would not need to be seen again. Then along comes my 12 year old son~~he has congenital scoliosis with a curve of 35 degrees and the orthopedic surgeon is saying he may need surgery? I'm at a loss as to where to go from here. Can any of you folks give your two cents? I would really like to hear from those who have gone through surgery as well.
    Thanx so much~~
    Tina

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

    I don't know if you posted anywhere else, but this is the post I saw first, and am replying to...

    Two of my three children have scoliosis. My oldest (daughter) has scoliosis. The adolescent idiopathic kind. She wore a brace for about 6 months during her teenage years, and has never had surgery or any other treatment for her scoliosis.

    My 14yr old son was born with sever congenital scoliosis. He has had fusion surgery (at 11 months old) and adjustable rods placed. He is doing very well today. A very active teenager.

    I can imagine the diagnosis of your son is an overwhelming thought. If you have any questions or concerns, please ask a pediatric orthopedic surgeon who specializes in treating teenage boys with congenital spine issues/scoliosis. You need to be 100% confident in the surgeon and their recommendations. At 35 degrees, you have time to find answers. Do you know where along his spine the congenital malformation is? If it's a lumbar curve, he will be at a higher chance of needing an MRI to make sure his spinal cord is healthy.

    Good luck and keep us posted.
    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/

  3. #3
    Join Date
    Dec 2009
    Location
    Mississippi
    Posts
    70
    Hey, I will answer any questions that I can . Ask away!!
    Mandy is 11 and 1 week post op . She has her follow up visit tomorrow. Can't wait to see xrays and find out what the Dr has to say!
    Gina
    "With God All Things Are Possible"
    Mom to Mandy,age 11, surgery on Jan 14,2010
    to correct 51 degree T and 63 degree L curvatures.

  4. #4
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Hi Tina,

    My 14 year old son had fusion surgery at age 12 and he's very healthy and active now. He had a hemivertebra at T10 that caused the scoliosis to develop and we tried all sorts of treatments, for much of his life, to prevent the surgery but none of them worked. If you have any specific questions, please don't hesitate to ask them. We are here for you.

    My main advice is to get several opinions before deciding on surgery. People on this forum can recommend doctors in many areas of the U.S., as well as other countries/regions such as Australia and the U.K. if you tell us what part of the world you're in. One of the more important things to look for is a pediatric orthopedic surgeon who is a member of the Scoliosis Research Society.

    Good luck with everything!
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

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