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congenital scoliosis (rodding the spine to stop growing)

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  • congenital scoliosis (rodding the spine to stop growing)

    Hi my daughter who is now 11.5 yrs old. Was diagnosed as haveing congenital scoliosis at the age of 4 we were told that if she didnt have surgery before her net groth spirt she wouldnt live to see 10. At the age of 5 she has her 2 in 1 operation where she had a rod fitted to the lower part of her spine she has a scar running the length of her back and one on her left side running from her chest to her side. i was told she would need further surgey to correct hump right sholder back area when she hit pubity. Now we went for our yearly apointment yesturday and are told that although the rod in her lower spine is preventing twisting. the upper half of her spine the curve is worse than pre op. they spoke of rodding the spine but by doing so will prevent her from getting any taller she will stay the size she is this could involve 2 more major surgieries risks involved all i know so far is 5% paralised.
    iam at a loss shocked to say the least any help we are from the uk.
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