Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 and again.......take 3...Sorry, if you all get this 3 times! It got lost. h ----------------------- Re: Carmell From: heather@... Date: Tue, March 18, 2008 10:54 am To: infantile_scoliosis -------------------------------------------------------------------------- Oops! Sent that last post without actually replying to it..... Carmell, I think your exactly right. I know that Olivia has some type of Ehlers-Danlos syndrome....I also have it, but her presentation of the ctd (connective tissue disorder) is a little worse(than mine). Her connective tissues are effected, but her muscles are working great. She is very strong, and her muscles are very pronounced in all other areas of her body. Its only her back that is loosing muscle, and I think its because the internal splintage is very effective....Just a little too, effective..If you know what I mean. Anyway, I am still grateful that we are on this route of treatment. I also agree that a fusion would NOT have held her relentless curves, especially while she is growing. The fusion would have broke, and/or other curves would have developed and growth would have been restricted. We are fortunate that the VEPTR's have bought her invaluable growth time, and we will continue with this type of VEPTR, until we can no longer. She is in her 2nd full day of school and doing well! Hope you guys are doing well, too! HRH > Hi , > > I'm very happy to hear your weather is nice. We have beautiful blue sky, but temps only in the 30s still (burrrrrr). Hopefully Olivia had a nice weekend. > > <<While the dual VEPTR hybrid has helped maintain rotation and her curves, the muscle deterioration throughout her entire back is so very > apparent....>> > > I wonder how much of Olivia's CTD has to do with the muscle > atrophy/deterioration? I agree that the dual pelvic attached VEPTRs are more restrictive than the lumber-attached device, but MOST VEPTR kids I know do not have the muscle issues Olivia is having. Most VEPTR kids are able to maintain the muscle structure and be active and develop as they grow. I'm sorry to hear her back looks worse than it did when you started this VEPTR journey. Where's that crystal ball when you need it? I also firmly believe that even with fusion (as final as that is) her spine would not have stopped curving/rotating/twisting, etc. Her spine has a mind of its own, and her muscles aren't as strong as most kids to support that spine. I don't know of as many kids with CTDs as without so I'm making assumptions based on process of elimination (ie, the other kids aren't having muscle atropy, so maybe the CTD is contributing to the > deterioration?, etc) > > More hugs and best wishes that something will go right/better on Olivia's journey. Take care! > > Carmell > > > > > Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, 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 group > http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 got it all three times so far. Thanks . heather@... wrote: and again.......take 3...Sorry, if you all get this 3 times! It got lost. h ----------------------- Re: Carmell From: heather@... Date: Tue, March 18, 2008 10:54 am To: infantile_scoliosis ---------------------------------------------------------- Oops! Sent that last post without actually replying to it..... Carmell, I think your exactly right. I know that Olivia has some type of Ehlers-Danlos syndrome....I also have it, but her presentation of the ctd (connective tissue disorder) is a little worse(than mine). Her connective tissues are effected, but her muscles are working great. She is very strong, and her muscles are very pronounced in all other areas of her body. Its only her back that is loosing muscle, and I think its because the internal splintage is very effective....Just a little too, effective..If you know what I mean. Anyway, I am still grateful that we are on this route of treatment. I also agree that a fusion would NOT have held her relentless curves, especially while she is growing. The fusion would have broke, and/or other curves would have developed and growth would have been restricted. We are fortunate that the VEPTR's have bought her invaluable growth time, and we will continue with this type of VEPTR, until we can no longer. She is in her 2nd full day of school and doing well! Hope you guys are doing well, too! HRH > Hi , > > I'm very happy to hear your weather is nice. We have beautiful blue sky, but temps only in the 30s still (burrrrrr). Hopefully Olivia had a nice weekend. > > <<While the dual VEPTR hybrid has helped maintain rotation and her curves, the muscle deterioration throughout her entire back is so very > apparent....>> > > I wonder how much of Olivia's CTD has to do with the muscle > atrophy/deterioration? I agree that the dual pelvic attached VEPTRs are more restrictive than the lumber-attached device, but MOST VEPTR kids I know do not have the muscle issues Olivia is having. Most VEPTR kids are able to maintain the muscle structure and be active and develop as they grow. I'm sorry to hear her back looks worse than it did when you started this VEPTR journey. Where's that crystal ball when you need it? I also firmly believe that even with fusion (as final as that is) her spine would not have stopped curving/rotating/twisting, etc. Her spine has a mind of its own, and her muscles aren't as strong as most kids to support that spine. I don't know of as many kids with CTDs as without so I'm making assumptions based on process of elimination (ie, the other kids aren't having muscle atropy, so maybe the CTD is contributing to the > deterioration?, etc) > > More hugs and best wishes that something will go right/better on Olivia's journey. Take care! > > Carmell > > > > > Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, 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 group > http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > > Quote Link to comment Share on other sites More sharing options...
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