Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Hey all, I was just wondering if there is anyone here with any experience with growing rods. Has anyone been through the surgery? Thanks, Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Hi Connie My daughter also has the VEPTR " rods " that Carmell is talking about. In my daughter's case the two rods are attached rib to pelvis on each side of her spine, and literally act as an internal brace. We had been told a couple of years ago, that the " old style " growing rods were not being used as much, in favour of this 'new' VEPTR device. And they have honestly been wonderful for my daughter. Jacki > > Hey all, > I was just wondering if there is anyone here with any experience with > growing rods. Has anyone been through the surgery? > > Thanks, > Connie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Hi Connie I'm so glad that you are getting a second opinion - Especially from the doc's that came up with the VEPTR! I hear waits are long, but they deal with complex kids, so I'd say you'll be in perfect hands. Do you mind me asking how old is your son? And what kind of " medical issues " does he have. Hope I'm not being too nosy! We travel to Salt Lake City from Vancouver, Canada and do it as we feel this is the best thing for our daughter, though it's not always easy! Jacki > > > > Hey all, > > I was just wondering if there is anyone here with any experience > with > > growing rods. Has anyone been through the surgery? > > > > Thanks, > > Connie > > > > > > _____________________________________________________________________ ___ > Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Hello Fellow Canadian! I'm originally from London, England, but have made Vancouver my home for a few years now! I think we've *spoken* before, as I recognize your son's name, and story. My daughter was diagnosed with a conective tissues disorder/probable marfan syndrome at around 2 yrs old. Genetics this year decided that she does now meet the criteria for a definite dx of Marfan Syndrome. Nothing really changed! Her aorta is upper limit normal, so she continues with echo's every year. She had hernia repair last year, which the doc's think we'll need repairing again..... We did try bracing, unsuccessfully, and casting to hold her curves, but her spine is just soooo flexible that we felt that she needed more. We were lucky that our Ortho at Shriner's SLC sent us to Dr J at Primary to see if VEPTR might be the answer. It was! She is doing great. She also didn't have any rib fusion, or lung function issues, and for us Dr felt that 2 rib to pelvis devices would work best for her. He did talk about the possibility of 'migration' of the devices through the pelvis. But for us, the pro's far outweighed any possible cons. And if she does have problems, we'll just deal with it I guess.... Do you have a date to see the Ortho to San Antoino? I hear that Edmonton and Calgary are doing VEPTR! Weather here is oh so typical - Raining!!!!! Please email me more if you want to chat.... jabostock@... Jacki > > > > > > Hey all, > > > I was just wondering if there is anyone here with any experience > > with > > > growing rods. Has anyone been through the surgery? > > > > > > Thanks, > > > Connie > > > > > > > > > > > > __________________________________________________________ > ___ > > Check out the new AOL. Most comprehensive set of free safety and > security tools, free access to millions of high-quality videos from > across the web, free AOL Mail and more. > > > > > > Quote Link to comment Share on other sites More sharing options...
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