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  • Non Fusion Growth Rods

    Hello everyone out there. My name is Nancy and I have a 5 1/2 yr old daughter that was diagnosed 12 months ago with Idiopathic Severe Juvenile Scoliosis.

    The curve in her upper spine is 78.9 degrees and lower is 24. We are really scared and concerned about what her lifestyle will be after her surgery. We have agreed to go ahead with the surgery only for the simple reason that she wore a TLSO brace since August 2005 and we have actually seen her getting worse. She was measured at 58.3 last August and now she has progressed to almost 79.

    She wore her brace in the first few months only for 16 hrs a day. We went about 3 wks straight without wearing it because the redness and bruising was so bad. We had it re-adjusted so many times that now she isn't even wearing it. She is suppose to so that it will be easier preparing for the surgery. We have placed it on her and within hours we can take it off just to either let her skin breathe or give her a bath and the blotches of red are so dominate on her skin, then they turn into bruises.

    If anyone out there has gone through the sugery with their child, please shed some light whether it is positive or not, on how your child is doing afterwards. His/her recovery, lifestyle, and how they are adapting.

    I appreciate all of your comments.

    May God bless each and every one of us..

    Just remember, whatever doesn't break us, makes us stronger...

    Nancy

  • #2
    Hi Nancy,

    My son has two VEPTR (vertical expandable prosthetic titanium rib) devices. These are not the traditional growing rods, but have a generally similar purpose (to allow the spine to grow as the child grows). Braydon is now 11yrs old. He had the VEPTR implant surgery done 5 years ago (Aug. 15, 2001). He is doing GREAT. He will be starting middle school this week (YIKES!) and is very active - loves to ride his bike, go hiking, snowboarding in the winter, etc. His rods have not prevented him from doing anything (except playing full contact football). His quality of life has improved dramatically since having the VEPTR rods. I'd be very happy to share our experiences with you. You can email me at boulderfam@hotmail.com Also, please check out this website - http://www.veptr.com

    Questions for you - has your daughter had a full spine MRI? Does she have any other medical condition that would complicate her scoliosis treatment? Connective tissue disorder? Are you seeing a well-trained PEDIATRIC orthopedist who has treated many children like her?

    Scoliosis is not common in young children. Making sure there are no underlying causes for the scoliosis is very important.

    Keep us posted on how things go. I'd love to hear from you.

    BTW, the brace is likely a non-issue. Bracing has not been proven effective for controlling a scoliotic curve in young children well enough IMHO. Pick your battles. This is one I'm not sure you're gonna win. For some cases, braces are helpful as support, but not all.

    My best,
    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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