Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Also jumping in here... CTD and veptr is also something that we are dealing with. I don't find that 's muscles around his back have atrophied since his VEPTR implant but there wasn't much there to start with so it's hard to judge. He is however having problems with the pelvic attachment. His doc used screws thinking it would be less likely for migration but of course it happened. The screw on his left pelvis has moved in the bone and needs to be replaced. I'm not sure what would work best.... Any suggestions? He's having his first expansion on Tuesday and they will fix the problem then as well. I just hope they make the right decision on how to attach it so it doesn't happen again. Connie 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 Jacki is ehlers danlos on Marfan.com or is there a separate site? Shellie jabostock wrote: Hey - jumping in here coz CTD's and VEPTR are something we're dealing with here too :-) Siobhan's muscles aren't that strong unfortunately, and her CTD/ Marfan's seems VERY pronounced - She's like a floppy ragdoll by comparson to kids her age. She isn't able to bend and move that well with the VEPTR, and I worry some about muscle atrophy?? But I keep reminding myself that VEPTR wasn't designed for Siobhan's type of scoliosis, nothing has been (yet.....???), and I'm just so thankful that Siobhan see's Dr D, who was/is prepared to try to do what he can, and work with other doc's (so many don't!). Moving the VEPTR from Siobhan's pelvis has helped with the stooping, but when she's tired, she does still stoop, although no where near as badly as she did.... I also believe that having the VEPTR off her pelvis means that we aren't getting the correction with her rotation as we were - I guess it's the trade off? Anyhoo, enough of my ramblings..... Talking of websites to link to ISOP: www.marfan.org and www.veptr.com Siobhan is on Spring Break this week and is skiing today - who'd have thought it eh? Hugs to you and Liv. Jacki > Subject: 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 19, 2008 Report Share Posted March 19, 2008 Hi Connie - Good to hear from you. Sorry to hear that is having troubles with the pelvic attachments. Siobhan also had trouble with her VEPTRs being attached to her pelvis - We found that she had trouble standing straight - she just couldn't " push up against them " - and started the " stooping " - By the end of the day she was literally bent double! Anyhoo, last April Dr D'Astous decided to relocate them - Of course no one knew that the pelvic clips had actually become embedded into the pelvis, making them very difficult to remove - It was a nasty surgery, but like all our kids, Siobhan bounced back. Now the rods have been attached to the bottom of her spine, and she is doing well - It did work for the stooping problem, but we are seeing more rotation now.... It seems to me that with each case being so different, and using VEPTR not in the way they were intended, means that it's still a bit of a learning experience for all the doctors. Perhaps you could post your questions on www.veptr.com ? The forum there has lots of experienced VEPTR parents too :-) Hope all goes well next week. Jacki > > Also jumping in here... CTD and veptr is also something that we are dealing with. I don't find that 's muscles around his back have atrophied since his VEPTR implant but there wasn't much there to start with so it's hard to judge. > He is however having problems with the pelvic attachment. His doc used screws thinking it would be less likely for migration but of course it happened. The screw on his left pelvis has moved in the bone and needs to be replaced. I'm not sure what would work best.... Any suggestions? He's having his first expansion on Tuesday and they will fix the problem then as well. I just hope they make the right decision on how to attach it so it doesn't happen again. > > > Connie > > > 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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