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advice spinal rod to stop child growing?

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  • advice spinal rod to stop child 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.
    As any body faced this surgery please advice out of my mind with worry

  • #2
    hi there, i'm becky and as you can see, i'm from the UK too. i know a few people in a similar situation to you in the UK, and they're members of the forum which you can find here where they can offer help, advice and more importantly support. i'm also curious as to where your daughter is being treated and by whom? the other forum (SSO) is mainly used by brits and a lot of us have vast experience with scoliosis, i hope you'll come over soon as i'm not the absolute best person to help (i'm an adolescent scoli patient myself) but i've been treated at the royal national orthopaedic hospital in stanmore. look forward to hearing from you
    diagnosed aged 14 (2001)
    braced from july 2001 to february 2003 to hold curves
    fused T11-L3 on july 16th 2005 (aged 18)
    Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
    scoliosis support forum

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    • #3
      Hi,

      Fusion surgery is always going to prohibit vertical growth of the spine. Since your daughter has already had a MAJOR scoliosis surgery at age 5, that part of her spine that was fused will not grow anymore, even during her adolescent growth spurt. That part of her spine will grow in thickness, but not vertically.

      My suggestion to you is to ask your ortho (or preferrably another ortho for another opinion) if your daughter has the option of expandable rods that will not restrict the future growth of the remaining spine. Hopefully she would be a candidate for the expandable device so that she can have as much growth of the spine as possible before doing more fusion surgery.

      Good luck and let us know how things go.
      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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