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Thread: Experience with growth rods?

  1. #1
    Join Date
    Feb 2004
    Location
    columbus, ohio
    Posts
    8

    Experience with growth rods?

    Hi everyone,

    My 5 yr old son has been wearing a TLSO for 4 yrs & Dr. Durrani is now recommending growth rods. Zach's curve is 55 degrees. Does anyone have experience with them? I have found alot of info about the VEPTR, but not the growth rods- maybe I am not looking in the correct places. Anyone's input/experience with growing rods or websites for additional info would be appreciated.

    Thanks,
    Jenny
    Mom to Kara (8), Emmy (7), & Zach (5)

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

    My son is a VEPTR patient (almost 7yrs now). I know of several growing rod patients. I suggest you do a search for Drs. Behrooz Akbarnia (San Diego) and/or George Thompson (Cleveland). These docs have done several studies on growing rods, mostly single rod -vs- dual rod, etc.

    The main difference between VEPTR and growing rod is the way they are attached to the body. The growing rods are placed directly along the spine. VEPTR rods are not. VEPTR rods support the chestwall (if needed) and the spine by being attached to upper ribs and either the lumbar spine (with a hook) or the pelvis. There have been quite a few patients with growing rods (especially when they are placed at very young ages) who have developed spontaneous/pre-mature fusion of the spine. The fusion happens because of the friction of the rods along the spine. VEPTR rods do not have this risk.

    Another difference is the VEPTR rods are designed to give circumferential volume to the chest in kids who have compromised lung function. Before Braydon's VEPTR implant, we had NO IDEA he had compromised lung function. After the surgery, there was more than 40% improvement in his right lung size and function. Growing rods do not address lung function compromise.

    I'd be happy to share some photos of the two different rods, and before and after xrays, etc. I'm glad you are doing your research. Most ped. orthos. have experience with growing rods, but there is only a handful of docs approved to do VEPTR. That is one reason many docs don't recommend it (even if its the best option for a patient - sad, IMHO).

    Let me know how I can help.
    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
    Feb 2004
    Location
    columbus, ohio
    Posts
    8
    Thank you very much for explaining the difference. We are definitely going to get another opinion & will ask if he is a candidate for the VEPTR. It is so hard to know what to do!

    Jenny

  4. #4
    Join Date
    Mar 2005
    Location
    novato, ca
    Posts
    83
    I seem to be the only growth rod mom here. My daughter has had them for 3 yrs. now. I have never heard of the fusion problem. Dr. Diab at UCSF attaches them slightly differently, maybe that's why. He did say with us, that by attaching them to the ribs at top he seemed to get more growth at the time of lengthening.
    They have really worked for us, no major problems, and as Shelby has gotten older she figures out what her limitations really are works around them so kids don't know.
    She does still wear the brace to protect the rods, she's tall and thin so you can see part through the skin, but finally feels comfortable taking off the brace around the house, for swimming, etc.
    Good luck, let me know if you have anymore questions.
    Emily

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