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Old 1st May 2014, 08:20 PM
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tonibunny tonibunny is offline
T Sr: Admin, Big Sister and Da Police!
 
Join Date: Jan 1970
Posts: 15,400
Default Re: Help!!! Suggestions needed

Hi there, welcome to SSO

I'm really sorry your daughter is dealing with all of this. The fact that you mention that she has one rod which "hooks to the top of the ribcage" hints to me that she may have a specific type of growth rod known as the VEPTR, or "Titanium Rib". This is often used in complex cases of congenital scoliosis such as your daughter has; traditional growth rods typically attach to the spine itself.

It may be possible for your daughter to have magnetic growth rods, though these are far less likely to be used in cases of Congenital Scoliosis than in cases of Idiopathic Scoliosis (which tend to be a lot more straightforward) and they may not be available in your part of the world yet. This is something you will need to ask your daughter's surgeon about. Hopefully one of our US parents will reply to you; you may also like to ask for advice at the National Scoliosis Foundation of America's forums at www.scoliosis.org/forum .

Welcome again
Toni xx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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