Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 I came across this VEPTR clinical trial/study sponsored by Shriners. http://clinicaltrials.gov/ct2/show/NCT00689533 For those of us who are unsure whether the VEPTR can truly help children like Max who do not have any rib deformities and only has progressive infantile scoliosis, there is research goign on about the VEPTR. All the docs we saw wanted to do growing rods, we opted for the VEPTR after bracing and casting did not improve Max's progressive infantile scoliosis. Just wanted to share. Thanks, Aekta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 Thanks for posting, Aekta,I think they announced this at the SRS conference last week, too. I hope this helps dispel the myth that VEPTR is ONLY for kids with chestwall/lung/rib anomalies. Not the case. For these surgeons involved in the study, they have been doing surgery on kids like Max for several years already. Glad to see they are doing an official study. The ortho world tends to need documenation, and more documentation, before thinking new things. UGH.Hope Max is doing great!CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 18, GERD, and Braydon 13, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support grouphttp://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 Thanks Aekta How is Max doing? Darrell VEPTR clinical trial I came across this VEPTR clinical trial/study sponsored by Shriners.http://clinicaltrials.gov/ct2/show/NCT00689533For those of us who are unsure whether the VEPTR can truly help children like Max who do not have any rib deformities and only has progressive infantile scoliosis, there is research goign on about the VEPTR. All the docs we saw wanted to do growing rods, we opted for the VEPTR after bracing and casting did not improve Max's progressive infantile scoliosis. Just wanted to share.Thanks,Aekta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 Hi Darrell, Max is doing great. He had his first VEPTR II lengthening on Aug. 25. He is 3 years, potty trained, loves pre-school, and loves being a big brother. He moves around like you wouldn't know he has the VEPTR in his back. He amazes me daily! Thanks for asking. Aekta > > Thanks Aekta > > How is Max doing? > > Darrell > > VEPTR clinical trial > > > I came across this VEPTR clinical trial/study sponsored by Shriners. > > http://clinicaltrials.gov/ct2/show/NCT00689533 > > For those of us who are unsure whether the VEPTR can truly help > children like Max who do not have any rib deformities and only has > progressive infantile scoliosis, there is research goign on about the > VEPTR. All the docs we saw wanted to do growing rods, we opted for the > VEPTR after bracing and casting did not improve Max's progressive > infantile scoliosis. > > Just wanted to share. > > Thanks, > Aekta > Quote Link to comment Share on other sites More sharing options...
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