Guest guest Posted March 8, 2007 Report Share Posted March 8, 2007 Carmell, You are ALWAYS so incredibly helpful and your way of explaining things is awesome!!! Thank you so much. Just to touch on a couple of things you mentioned....You said that finding a doc who has treated someone like would be key. Well there lies the problem. We have of yet to find another child like him (physically) none of his docs have been able to find any and this would include an array of specialists from three different states. He has baffled the best of them!!! He does well with anesthesia there is no problem there. I have worked so hard at getting an appointment with San , do you really think it's not the best choice? Also I was told today they might not be able to see him with the halo traction.. I'm not sure why. San was our first choice because we can drive there with the wheelchair and traction. Getting on a plane would mean not being able to bring his traction. To be honest, I am not looking forward to getting rid of the traction, it has been great!! I never thought I would say that five months ago but besides a few loose pins that needed to be replaced and one infected pin sight, it has been easy. To see him so upright is great!! he doesn't mind it at all!! Thanks again for all your help, Connie Connie/ Hi Connie, I've been thinking about your post, and wanted to help. Not sure if I can help, but I do have some thoughts on this... you wrote: <<...our Doc's surgery of choice is using the growing rods in the same way as the VEPTR on one side however he is quite convinced that on the other side, he'll need to do one rod down the spine because of the spine rotation.>> <<Another point he made is that the growing rod is much smaller in size then the VEPTR rod.>> <<He is very very very floppy and his muscles are very weak. He cannot walk or weight bear at all.>> My first reaction is to get an opinion from a VEPTR doc who has treated children with similar physical conditions as . His muscle structure and the floppiness he has will be a big part in what the right choice for surgery should be. I would want to find out the success rate for both growing-type rods, and VEPTR in kids like him. It sounds like your doc has been approved to do VEPTR, but hasn't done many (if any?) personally, so he doesn't have the direct expertise to make an informed recommendation, maybe? I don't know if the docs in San do either. I'd want to know how many kids like they have treated, successfully. The old (not so old because VEPTR isn't old) school of thought is that the VEPTR devices will not address rotation. I've known kids who have had very good rotational improvement, especially when their spines are very flexible and pliable. I wouldn't write VEPTR off completely, until you hear at least one other opinion about this. I'd be sending his file to other VEPTR docs (ie, drs. Emans, Betz, , etc.) to see if they would give you an opinion without seeing him in person. Another factor is repeated surgeries. This is a harsh reality with both VEPTR and growing rods. Some kids just can't tolerate repeated anesthesia. If has a problem with anesthesia (you didn't write anything that suggested he does, just an outside observation) or if he has such thin skin that repeatedly opening and closing an incision would be a challenge, you may want to ask about more permanent (fusion) options sooner than later. Many kids who seem medically fragile do fine with both these situations (anesthesia and thin skin). I don't know the actual size difference between growing rods and VEPTR rods. I do know that if his body is going to depend greatly on rods for support, you want something that will be very strong and very supportive. The VEPTR and growing rods both are literally internal braces. These devices are what supports the spine, chest, and entire trunk of the patient. Having a thinner rod may be nice cosmetically, but is it the right answer for someone who needs major support? I hope you find some answers very soon. I can imagine you'd like to get rid of that halo soon so he isn't anchored anymore. But maybe its also giving him a quality of life he needs. Good luck with everything. Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, GERD, and Braydon 11, 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, pes cavus, SUA, GERD, Gastroparesis, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health./group/CongenitalScoliosisSupport/ __________________________________________________________ Don't get soaked. Take a quick peek at the forecast with the Search weather shortcut. http://tools.search./shortcuts/#loc_weather ________________________________________________________________________ AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2007 Report Share Posted March 9, 2007 Connie, Did they say why they couldn't see him with the traction? Moriah went in halo and traction to have her first Veptrs placed. They put the Veptrs in before removing the halo just to be sure they had everything where they wanted it. The only problem we ran into was anchoring one side high enough. Dr. was her surgeon. I am sure he would do a wonderful job and would not accept unless he was felt he could help him. Shellie tovi39@... wrote: Carmell, You are ALWAYS so incredibly helpful and your way of explaining things is awesome!!! Thank you so much. Just to touch on a couple of things you mentioned....You said that finding a doc who has treated someone like would be key. Well there lies the problem. We have of yet to find another child like him (physically) none of his docs have been able to find any and this would include an array of specialists from three different states. He has baffled the best of them!!! He does well with anesthesia there is no problem there. I have worked so hard at getting an appointment with San , do you really think it's not the best choice? Also I was told today they might not be able to see him with the halo traction.. I'm not sure why. San was our first choice because we can drive there with the wheelchair and traction. Getting on a plane would mean not being able to bring his traction. To be honest, I am not looking forward to getting rid of the traction, it has been great!! I never thought I would say that five months ago but besides a few loose pins that needed to be replaced and one infected pin sight, it has been easy. To see him so upright is great!! he doesn't mind it at all!! Thanks again for all your help, Connie Connie/ Hi Connie, I've been thinking about your post, and wanted to help. Not sure if I can help, but I do have some thoughts on this... you wrote: <<...our Doc's surgery of choice is using the growing rods in the same way as the VEPTR on one side however he is quite convinced that on the other side, he'll need to do one rod down the spine because of the spine rotation.>> <<Another point he made is that the growing rod is much smaller in size then the VEPTR rod.>> <<He is very very very floppy and his muscles are very weak. He cannot walk or weight bear at all.>> My first reaction is to get an opinion from a VEPTR doc who has treated children with similar physical conditions as . His muscle structure and the floppiness he has will be a big part in what the right choice for surgery should be. I would want to find out the success rate for both growing-type rods, and VEPTR in kids like him. It sounds like your doc has been approved to do VEPTR, but hasn't done many (if any?) personally, so he doesn't have the direct expertise to make an informed recommendation, maybe? I don't know if the docs in San do either. I'd want to know how many kids like they have treated, successfully. The old (not so old because VEPTR isn't old) school of thought is that the VEPTR devices will not address rotation. I've known kids who have had very good rotational improvement, especially when their spines are very flexible and pliable. I wouldn't write VEPTR off completely, until you hear at least one other opinion about this. I'd be sending his file to other VEPTR docs (ie, drs. Emans, Betz, , etc.) to see if they would give you an opinion without seeing him in person. Another factor is repeated surgeries. This is a harsh reality with both VEPTR and growing rods. Some kids just can't tolerate repeated anesthesia. If has a problem with anesthesia (you didn't write anything that suggested he does, just an outside observation) or if he has such thin skin that repeatedly opening and closing an incision would be a challenge, you may want to ask about more permanent (fusion) options sooner than later. Many kids who seem medically fragile do fine with both these situations (anesthesia and thin skin). I don't know the actual size difference between growing rods and VEPTR rods. I do know that if his body is going to depend greatly on rods for support, you want something that will be very strong and very supportive. The VEPTR and growing rods both are literally internal braces. These devices are what supports the spine, chest, and entire trunk of the patient. Having a thinner rod may be nice cosmetically, but is it the right answer for someone who needs major support? I hope you find some answers very soon. I can imagine you'd like to get rid of that halo soon so he isn't anchored anymore. But maybe its also giving him a quality of life he needs. Good luck with everything. Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, GERD, and Braydon 11, 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, pes cavus, SUA, GERD, Gastroparesis, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health./group/CongenitalScoliosisSupport/ __________________________________________________________ Don't get soaked. Take a quick peek at the forecast with the Search weather shortcut. http://tools.search./shortcuts/#loc_weather __________________________________________________________ AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
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