Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Shellie and other VEPTR parents, Thank you for the suggestion. I will look into it. What is the criteria that docs use to determine the VEPTR over growing rod? Why do some recommend VEPTR over growing rod when no chest wall/rib cage deformity? Were you given the option between VEPTR and growing rod? Maybe I'm just very overwhelmed, but I have a hard time understanding how the VEPTR can achieve the best correction over the growing rod? I understand how the VEPTR works and it's benefits, but why wouldn't Dr. Sturm who does both and participating in studies in the VEPTR wouldn't recommend the VEPTR if it's less invasive? Which achieves better correction growing rod or VEPTR? I'm not giving up! Thank you everyone for your feedback! Aekta > > > > Aetka, > > > > <<I did ask about the VEPTER. Dr. Sturm said since > > Max's curve is lower on his back (lumbar region), and > > his chest wall is not compromised, he would not > > recommend the VEPTER.>> > > > > I'm sorry to hear Max is not responding as well to > > casting as you'd hoped. I can imagine how frustrated > > you must feel. I wish I could say something that > > would be positive or encouraging. I just wanted to > > share a few things I know about growing rods -vs- > > VEPTR. Max is very young still. Having growing rods > > placed *could* stimulate bone growth that leads to a > > natural, premature, spontaneous fusion of the spine. > > The growing rods are placed along the spine. They are > > anchored at the top and bottom by screws into the > > vertebrae, and are fused into place. The area of > > spine between the rods is actually touching the rods > > (assuming Dr. Sturm is planning on dual growing rods, > > not just one growing rod). This area between the > > anchor points will stimulate bone growth because of > > the metal touching the spine. I've heard of several > > patients with early placement of growing rods who have > > had early spontaneous fusion of the spine. This is > > fusion. This prevents vertical growth of the spine > > during those critical teenage years. > > > > VEPTR rods have continued to evolve. There are > > several patients who have VEPTR rods placed on an > > upper rib behind the collarbone in the back, and > > attached to the pelvis on the bottom. They do not > > touch the spine at all. I can send you some photos of > > kids who have had these pelvic attachments (and > > 's Olivia has these also). Many of these > > pelvic VEPTR kids have lumbar curves, not thoracic > > curves. The original/initial design of the VEPTR was > > to support the chest in kids with chestwall > > deformities (even missing parts of the chestwall - > > very extreme cases). However, the newer designs of > > the VEPTR are for kids with a wider range of medical > > issues, including lumbar scoliosis. > > > > Another suggestion is to investigate the Shilla > > procedure. This is new to the USA, and looks > > promising. It is similar to the growing rods in that > > two rods are placed along the spine (anchored into > > place with screws and fusion) but the middle of the > > rods have sliding screws so the spine grows and the > > rods elongate with the natural growth of the spine. > > No need for expansion surgeries every 6 months. There > > is only 2 years of followup for some of these kids, > > but it does look promising for a select type of spine > > malformation/scoliosis. Dr. McCarthy in > > Little Rock AR developed this procedure. Dr. Lenke in > > MN is one of the surgeons doing studies on kids with > > Shilla. Dr. Skaggs in LA has done one or two Shillas, > > etc. Not much on the internet to research about > > Shilla. > > > > I don't mean to overload you with rambling. I just > > want you to make sure growing rods are the right > > procedure for Max. Maybe you have a similar attitude > > we had - try something that is least invasive first. > > If that doesn't work, you can try something else (or > > even revert back to traditional fusion, if nothing > > works). Fortunately for Braydon, VEPTR has been a > > blessing. His quality of life says it all. > > > > My best, > > 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/ > > > > > > > __________________________________________________________ > _______________ > > Check out the hottest 2008 models today at Yahoo! Autos. > > http://autos.yahoo.com/new_cars.html > > > > > > > > > --------------------------------- > Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Shellie and other VEPTR parents, Thank you for the suggestion. I will look into it. What is the criteria that docs use to determine the VEPTR over growing rod? Why do some recommend VEPTR over growing rod when no chest wall/rib cage deformity? Were you given the option between VEPTR and growing rod? Maybe I'm just very overwhelmed, but I have a hard time understanding how the VEPTR can achieve the best correction over the growing rod? I understand how the VEPTR works and it's benefits, but why wouldn't Dr. Sturm who does both and participating in studies in the VEPTR wouldn't recommend the VEPTR if it's less invasive? Which achieves better correction growing rod or VEPTR? I'm not giving up! Thank you everyone for your feedback! Aekta > > > > Aetka, > > > > <<I did ask about the VEPTER. Dr. Sturm said since > > Max's curve is lower on his back (lumbar region), and > > his chest wall is not compromised, he would not > > recommend the VEPTER.>> > > > > I'm sorry to hear Max is not responding as well to > > casting as you'd hoped. I can imagine how frustrated > > you must feel. I wish I could say something that > > would be positive or encouraging. I just wanted to > > share a few things I know about growing rods -vs- > > VEPTR. Max is very young still. Having growing rods > > placed *could* stimulate bone growth that leads to a > > natural, premature, spontaneous fusion of the spine. > > The growing rods are placed along the spine. They are > > anchored at the top and bottom by screws into the > > vertebrae, and are fused into place. The area of > > spine between the rods is actually touching the rods > > (assuming Dr. Sturm is planning on dual growing rods, > > not just one growing rod). This area between the > > anchor points will stimulate bone growth because of > > the metal touching the spine. I've heard of several > > patients with early placement of growing rods who have > > had early spontaneous fusion of the spine. This is > > fusion. This prevents vertical growth of the spine > > during those critical teenage years. > > > > VEPTR rods have continued to evolve. There are > > several patients who have VEPTR rods placed on an > > upper rib behind the collarbone in the back, and > > attached to the pelvis on the bottom. They do not > > touch the spine at all. I can send you some photos of > > kids who have had these pelvic attachments (and > > 's Olivia has these also). Many of these > > pelvic VEPTR kids have lumbar curves, not thoracic > > curves. The original/initial design of the VEPTR was > > to support the chest in kids with chestwall > > deformities (even missing parts of the chestwall - > > very extreme cases). However, the newer designs of > > the VEPTR are for kids with a wider range of medical > > issues, including lumbar scoliosis. > > > > Another suggestion is to investigate the Shilla > > procedure. This is new to the USA, and looks > > promising. It is similar to the growing rods in that > > two rods are placed along the spine (anchored into > > place with screws and fusion) but the middle of the > > rods have sliding screws so the spine grows and the > > rods elongate with the natural growth of the spine. > > No need for expansion surgeries every 6 months. There > > is only 2 years of followup for some of these kids, > > but it does look promising for a select type of spine > > malformation/scoliosis. Dr. McCarthy in > > Little Rock AR developed this procedure. Dr. Lenke in > > MN is one of the surgeons doing studies on kids with > > Shilla. Dr. Skaggs in LA has done one or two Shillas, > > etc. Not much on the internet to research about > > Shilla. > > > > I don't mean to overload you with rambling. I just > > want you to make sure growing rods are the right > > procedure for Max. Maybe you have a similar attitude > > we had - try something that is least invasive first. > > If that doesn't work, you can try something else (or > > even revert back to traditional fusion, if nothing > > works). Fortunately for Braydon, VEPTR has been a > > blessing. His quality of life says it all. > > > > My best, > > 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/ > > > > > > > __________________________________________________________ > _______________ > > Check out the hottest 2008 models today at Yahoo! Autos. > > http://autos.yahoo.com/new_cars.html > > > > > > > > > --------------------------------- > Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Thank you ! This has been a long, difficult road, as you well know. But, we trust God with all our hearts and trust that our child is going to be ok. Thank you for the prayers! We sure need them. I am so glad I've found this group! Have a great day! Esther If anyone speaks ill of you, Praise them always. If anyone injures you, Serve them nicely. If anyone persecutes you, Help them in all possible ways. You will attain immense strength. You will control anger and pride. You will enjoy peace, poise, and serenity. (Unknown) [infantile_scoliosi s] Max: Surgery Max had his post-op on friday from his cast Miss Mehta placed on 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP. Not good news at all. Max's curve is at the highest ever. On 8/8/07 after 6 casts...his curve was 80 degrees out of cast. Miss Mehta placed his cast and the curve was reduced to 46 degrees. Friday's in cast x-ray showed Max's curve at 66 degrees. Basically this cast also did not hold Max's curve. Dr. Sturm told us after 1 full year of casting every 8 weeks, the curve is still progressing. His recommendation is growing rod surgery right after the first of the year. So Max will have more 2 casts. Max is scheduled 10/9/07 for his next cast change. We knew this day was coming, but we were hopeful to buy a couple more years. We are grateful to have had casting as an option as we were able to prolong surgery for 1 1/2 years. To make everything more challenging, I am scheduled for my c-section on 12/31/07. So the first 2 months of 2008 will be very interesting and challenging. Cree (Dr. Sturm's nurse) is going to talk to Dr. Sturm and see if we can schedule surgery late January/early February so I can have some healing time from my c-section. Needless to say I was very shocked by the news on friday and couldn't think of 1 question to ask. If anyone has any thoughts or questions that I should ask, please share. Is anyone aware of other treatment options? Max does not qualify for stapling. We have a few months to get all of the questions answered. I did ask about the VEPTER. Dr. Sturm said since Max's curve is lower on his back (lumbar region), and his chest wall is not compromised, he would not recommend the VEPTER. Max will be exactly 2 1/2 at the time of surgery. Thank you, Aekta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Thank you ! This has been a long, difficult road, as you well know. But, we trust God with all our hearts and trust that our child is going to be ok. Thank you for the prayers! We sure need them. I am so glad I've found this group! Have a great day! Esther If anyone speaks ill of you, Praise them always. If anyone injures you, Serve them nicely. If anyone persecutes you, Help them in all possible ways. You will attain immense strength. You will control anger and pride. You will enjoy peace, poise, and serenity. (Unknown) [infantile_scoliosi s] Max: Surgery Max had his post-op on friday from his cast Miss Mehta placed on 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP. Not good news at all. Max's curve is at the highest ever. On 8/8/07 after 6 casts...his curve was 80 degrees out of cast. Miss Mehta placed his cast and the curve was reduced to 46 degrees. Friday's in cast x-ray showed Max's curve at 66 degrees. Basically this cast also did not hold Max's curve. Dr. Sturm told us after 1 full year of casting every 8 weeks, the curve is still progressing. His recommendation is growing rod surgery right after the first of the year. So Max will have more 2 casts. Max is scheduled 10/9/07 for his next cast change. We knew this day was coming, but we were hopeful to buy a couple more years. We are grateful to have had casting as an option as we were able to prolong surgery for 1 1/2 years. To make everything more challenging, I am scheduled for my c-section on 12/31/07. So the first 2 months of 2008 will be very interesting and challenging. Cree (Dr. Sturm's nurse) is going to talk to Dr. Sturm and see if we can schedule surgery late January/early February so I can have some healing time from my c-section. Needless to say I was very shocked by the news on friday and couldn't think of 1 question to ask. If anyone has any thoughts or questions that I should ask, please share. Is anyone aware of other treatment options? Max does not qualify for stapling. We have a few months to get all of the questions answered. I did ask about the VEPTER. Dr. Sturm said since Max's curve is lower on his back (lumbar region), and his chest wall is not compromised, he would not recommend the VEPTER. Max will be exactly 2 1/2 at the time of surgery. Thank you, Aekta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Thank you ! This has been a long, difficult road, as you well know. But, we trust God with all our hearts and trust that our child is going to be ok. Thank you for the prayers! We sure need them. I am so glad I've found this group! Have a great day! Esther If anyone speaks ill of you, Praise them always. If anyone injures you, Serve them nicely. If anyone persecutes you, Help them in all possible ways. You will attain immense strength. You will control anger and pride. You will enjoy peace, poise, and serenity. (Unknown) [infantile_scoliosi s] Max: Surgery Max had his post-op on friday from his cast Miss Mehta placed on 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP. Not good news at all. Max's curve is at the highest ever. On 8/8/07 after 6 casts...his curve was 80 degrees out of cast. Miss Mehta placed his cast and the curve was reduced to 46 degrees. Friday's in cast x-ray showed Max's curve at 66 degrees. Basically this cast also did not hold Max's curve. Dr. Sturm told us after 1 full year of casting every 8 weeks, the curve is still progressing. His recommendation is growing rod surgery right after the first of the year. So Max will have more 2 casts. Max is scheduled 10/9/07 for his next cast change. We knew this day was coming, but we were hopeful to buy a couple more years. We are grateful to have had casting as an option as we were able to prolong surgery for 1 1/2 years. To make everything more challenging, I am scheduled for my c-section on 12/31/07. So the first 2 months of 2008 will be very interesting and challenging. Cree (Dr. Sturm's nurse) is going to talk to Dr. Sturm and see if we can schedule surgery late January/early February so I can have some healing time from my c-section. Needless to say I was very shocked by the news on friday and couldn't think of 1 question to ask. If anyone has any thoughts or questions that I should ask, please share. Is anyone aware of other treatment options? Max does not qualify for stapling. We have a few months to get all of the questions answered. I did ask about the VEPTER. Dr. Sturm said since Max's curve is lower on his back (lumbar region), and his chest wall is not compromised, he would not recommend the VEPTER. Max will be exactly 2 1/2 at the time of surgery. Thank you, Aekta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 I don't know - I'm scared to ask, but I plan to. I just don't want to present it in a way that would turn him off of it, and don't want to get him on the defensive side either. So much is riding on the way we approach him - it's a lot of pressure. We have an appointment in January with him and I plan to bring our results with us and show him the study and information at that time. As for an evaluation of his x-rays and such, contact Joetta (pronounced Joe- eh- tah, just like it's spelled) at St. Louis Shriner's. She is AWESOME - the Cree of St. Louis. Tell her Sandi Bruegger told you to call and talk to her and just tell her what's going on with Max. If anyone can pull the strings, it is she. Love S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 I don't know - I'm scared to ask, but I plan to. I just don't want to present it in a way that would turn him off of it, and don't want to get him on the defensive side either. So much is riding on the way we approach him - it's a lot of pressure. We have an appointment in January with him and I plan to bring our results with us and show him the study and information at that time. As for an evaluation of his x-rays and such, contact Joetta (pronounced Joe- eh- tah, just like it's spelled) at St. Louis Shriner's. She is AWESOME - the Cree of St. Louis. Tell her Sandi Bruegger told you to call and talk to her and just tell her what's going on with Max. If anyone can pull the strings, it is she. Love S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Hi Sandi, I just left Joetta a voice mail message. I'll keep you posted as I hear more. Thank you so much for your support and prayers. It'll be interesting to see what Dr. Lenke says about Jack's casting treatment. Aekta > > I don't know - I'm scared to ask, but I plan to. I just don't want to > present it in a way that would turn him off of it, and don't want to > get him on the defensive side either. So much is riding on the way we > approach him - it's a lot of pressure. > > We have an appointment in January with him and I plan to bring our > results with us and show him the study and information at that time. > > As for an evaluation of his x-rays and such, contact Joetta > (pronounced Joe- eh- tah, just like it's spelled) at St. Louis > Shriner's. She is AWESOME - the Cree of St. Louis. Tell her > Sandi Bruegger told you to call and talk to her and just tell her > what's going on with Max. If anyone can pull the strings, it is she. > > Love > S > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Hi Sandi, I just left Joetta a voice mail message. I'll keep you posted as I hear more. Thank you so much for your support and prayers. It'll be interesting to see what Dr. Lenke says about Jack's casting treatment. Aekta > > I don't know - I'm scared to ask, but I plan to. I just don't want to > present it in a way that would turn him off of it, and don't want to > get him on the defensive side either. So much is riding on the way we > approach him - it's a lot of pressure. > > We have an appointment in January with him and I plan to bring our > results with us and show him the study and information at that time. > > As for an evaluation of his x-rays and such, contact Joetta > (pronounced Joe- eh- tah, just like it's spelled) at St. Louis > Shriner's. She is AWESOME - the Cree of St. Louis. Tell her > Sandi Bruegger told you to call and talk to her and just tell her > what's going on with Max. If anyone can pull the strings, it is she. > > Love > S > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Hi Sandi, I just left Joetta a voice mail message. I'll keep you posted as I hear more. Thank you so much for your support and prayers. It'll be interesting to see what Dr. Lenke says about Jack's casting treatment. Aekta > > I don't know - I'm scared to ask, but I plan to. I just don't want to > present it in a way that would turn him off of it, and don't want to > get him on the defensive side either. So much is riding on the way we > approach him - it's a lot of pressure. > > We have an appointment in January with him and I plan to bring our > results with us and show him the study and information at that time. > > As for an evaluation of his x-rays and such, contact Joetta > (pronounced Joe- eh- tah, just like it's spelled) at St. Louis > Shriner's. She is AWESOME - the Cree of St. Louis. Tell her > Sandi Bruegger told you to call and talk to her and just tell her > what's going on with Max. If anyone can pull the strings, it is she. > > Love > S > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Great suggestion Shellie Get the opinion of the expert in VEPTR I copied/ pasted this from the Veptr.com website. There are parents on the forum with kids that have VEPTR and growth rods I believe..... >>Christus Santa Children's Hospital >>333 N. Santa St. >>San , TX 78207 >> Contact: - Website - Lori Buegeler, Coordinator Notes: Christus Santa Children's Hospital is the primary location in the FDA's multi-center feasibility study. It was here in 1989 that Dr. , assisted by Dr. et al., invented and implemented the first VEPTR device, code named `The Titanium Rib Project'. Since then, the procedure has evolved and matured, and Santa remains at the forefront. Patients from around the world travel here to meet Dr. and his team! If you have a unique or special orthopedic case, this likely will be your best choice of locations! No center has more experience by a large margin. > > > > Aetka, > > > > <<I did ask about the VEPTER. Dr. Sturm said since > > Max's curve is lower on his back (lumbar region), and > > his chest wall is not compromised, he would not > > recommend the VEPTER.>> > > > > I'm sorry to hear Max is not responding as well to > > casting as you'd hoped. I can imagine how frustrated > > you must feel. I wish I could say something that > > would be positive or encouraging. I just wanted to > > share a few things I know about growing rods -vs- > > VEPTR. Max is very young still. Having growing rods > > placed *could* stimulate bone growth that leads to a > > natural, premature, spontaneous fusion of the spine. > > The growing rods are placed along the spine. They are > > anchored at the top and bottom by screws into the > > vertebrae, and are fused into place. The area of > > spine between the rods is actually touching the rods > > (assuming Dr. Sturm is planning on dual growing rods, > > not just one growing rod). This area between the > > anchor points will stimulate bone growth because of > > the metal touching the spine. I've heard of several > > patients with early placement of growing rods who have > > had early spontaneous fusion of the spine. This is > > fusion. This prevents vertical growth of the spine > > during those critical teenage years. > > > > VEPTR rods have continued to evolve. There are > > several patients who have VEPTR rods placed on an > > upper rib behind the collarbone in the back, and > > attached to the pelvis on the bottom. They do not > > touch the spine at all. I can send you some photos of > > kids who have had these pelvic attachments (and > > 's Olivia has these also). Many of these > > pelvic VEPTR kids have lumbar curves, not thoracic > > curves. The original/initial design of the VEPTR was > > to support the chest in kids with chestwall > > deformities (even missing parts of the chestwall - > > very extreme cases). However, the newer designs of > > the VEPTR are for kids with a wider range of medical > > issues, including lumbar scoliosis. > > > > Another suggestion is to investigate the Shilla > > procedure. This is new to the USA, and looks > > promising. It is similar to the growing rods in that > > two rods are placed along the spine (anchored into > > place with screws and fusion) but the middle of the > > rods have sliding screws so the spine grows and the > > rods elongate with the natural growth of the spine. > > No need for expansion surgeries every 6 months. There > > is only 2 years of followup for some of these kids, > > but it does look promising for a select type of spine > > malformation/scoliosis. Dr. McCarthy in > > Little Rock AR developed this procedure. Dr. Lenke in > > MN is one of the surgeons doing studies on kids with > > Shilla. Dr. Skaggs in LA has done one or two Shillas, > > etc. Not much on the internet to research about > > Shilla. > > > > I don't mean to overload you with rambling. I just > > want you to make sure growing rods are the right > > procedure for Max. Maybe you have a similar attitude > > we had - try something that is least invasive first. > > If that doesn't work, you can try something else (or > > even revert back to traditional fusion, if nothing > > works). Fortunately for Braydon, VEPTR has been a > > blessing. His quality of life says it all. > > > > My best, > > 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/ > > > > > > > __________________________________________________________ > _______________ > > Check out the hottest 2008 models today at Yahoo! Autos. > > http://autos.yahoo.com/new_cars.html > > > > > > > > > --------------------------------- > Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Great suggestion Shellie Get the opinion of the expert in VEPTR I copied/ pasted this from the Veptr.com website. There are parents on the forum with kids that have VEPTR and growth rods I believe..... >>Christus Santa Children's Hospital >>333 N. Santa St. >>San , TX 78207 >> Contact: - Website - Lori Buegeler, Coordinator Notes: Christus Santa Children's Hospital is the primary location in the FDA's multi-center feasibility study. It was here in 1989 that Dr. , assisted by Dr. et al., invented and implemented the first VEPTR device, code named `The Titanium Rib Project'. Since then, the procedure has evolved and matured, and Santa remains at the forefront. Patients from around the world travel here to meet Dr. and his team! If you have a unique or special orthopedic case, this likely will be your best choice of locations! No center has more experience by a large margin. > > > > Aetka, > > > > <<I did ask about the VEPTER. Dr. Sturm said since > > Max's curve is lower on his back (lumbar region), and > > his chest wall is not compromised, he would not > > recommend the VEPTER.>> > > > > I'm sorry to hear Max is not responding as well to > > casting as you'd hoped. I can imagine how frustrated > > you must feel. I wish I could say something that > > would be positive or encouraging. I just wanted to > > share a few things I know about growing rods -vs- > > VEPTR. Max is very young still. Having growing rods > > placed *could* stimulate bone growth that leads to a > > natural, premature, spontaneous fusion of the spine. > > The growing rods are placed along the spine. They are > > anchored at the top and bottom by screws into the > > vertebrae, and are fused into place. The area of > > spine between the rods is actually touching the rods > > (assuming Dr. Sturm is planning on dual growing rods, > > not just one growing rod). This area between the > > anchor points will stimulate bone growth because of > > the metal touching the spine. I've heard of several > > patients with early placement of growing rods who have > > had early spontaneous fusion of the spine. This is > > fusion. This prevents vertical growth of the spine > > during those critical teenage years. > > > > VEPTR rods have continued to evolve. There are > > several patients who have VEPTR rods placed on an > > upper rib behind the collarbone in the back, and > > attached to the pelvis on the bottom. They do not > > touch the spine at all. I can send you some photos of > > kids who have had these pelvic attachments (and > > 's Olivia has these also). Many of these > > pelvic VEPTR kids have lumbar curves, not thoracic > > curves. The original/initial design of the VEPTR was > > to support the chest in kids with chestwall > > deformities (even missing parts of the chestwall - > > very extreme cases). However, the newer designs of > > the VEPTR are for kids with a wider range of medical > > issues, including lumbar scoliosis. > > > > Another suggestion is to investigate the Shilla > > procedure. This is new to the USA, and looks > > promising. It is similar to the growing rods in that > > two rods are placed along the spine (anchored into > > place with screws and fusion) but the middle of the > > rods have sliding screws so the spine grows and the > > rods elongate with the natural growth of the spine. > > No need for expansion surgeries every 6 months. There > > is only 2 years of followup for some of these kids, > > but it does look promising for a select type of spine > > malformation/scoliosis. Dr. McCarthy in > > Little Rock AR developed this procedure. Dr. Lenke in > > MN is one of the surgeons doing studies on kids with > > Shilla. Dr. Skaggs in LA has done one or two Shillas, > > etc. Not much on the internet to research about > > Shilla. > > > > I don't mean to overload you with rambling. I just > > want you to make sure growing rods are the right > > procedure for Max. Maybe you have a similar attitude > > we had - try something that is least invasive first. > > If that doesn't work, you can try something else (or > > even revert back to traditional fusion, if nothing > > works). Fortunately for Braydon, VEPTR has been a > > blessing. His quality of life says it all. > > > > My best, > > 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/ > > > > > > > __________________________________________________________ > _______________ > > Check out the hottest 2008 models today at Yahoo! Autos. > > http://autos.yahoo.com/new_cars.html > > > > > > > > > --------------------------------- > Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Great suggestion Shellie Get the opinion of the expert in VEPTR I copied/ pasted this from the Veptr.com website. There are parents on the forum with kids that have VEPTR and growth rods I believe..... >>Christus Santa Children's Hospital >>333 N. Santa St. >>San , TX 78207 >> Contact: - Website - Lori Buegeler, Coordinator Notes: Christus Santa Children's Hospital is the primary location in the FDA's multi-center feasibility study. It was here in 1989 that Dr. , assisted by Dr. et al., invented and implemented the first VEPTR device, code named `The Titanium Rib Project'. Since then, the procedure has evolved and matured, and Santa remains at the forefront. Patients from around the world travel here to meet Dr. and his team! If you have a unique or special orthopedic case, this likely will be your best choice of locations! No center has more experience by a large margin. > > > > Aetka, > > > > <<I did ask about the VEPTER. Dr. Sturm said since > > Max's curve is lower on his back (lumbar region), and > > his chest wall is not compromised, he would not > > recommend the VEPTER.>> > > > > I'm sorry to hear Max is not responding as well to > > casting as you'd hoped. I can imagine how frustrated > > you must feel. I wish I could say something that > > would be positive or encouraging. I just wanted to > > share a few things I know about growing rods -vs- > > VEPTR. Max is very young still. Having growing rods > > placed *could* stimulate bone growth that leads to a > > natural, premature, spontaneous fusion of the spine. > > The growing rods are placed along the spine. They are > > anchored at the top and bottom by screws into the > > vertebrae, and are fused into place. The area of > > spine between the rods is actually touching the rods > > (assuming Dr. Sturm is planning on dual growing rods, > > not just one growing rod). This area between the > > anchor points will stimulate bone growth because of > > the metal touching the spine. I've heard of several > > patients with early placement of growing rods who have > > had early spontaneous fusion of the spine. This is > > fusion. This prevents vertical growth of the spine > > during those critical teenage years. > > > > VEPTR rods have continued to evolve. There are > > several patients who have VEPTR rods placed on an > > upper rib behind the collarbone in the back, and > > attached to the pelvis on the bottom. They do not > > touch the spine at all. I can send you some photos of > > kids who have had these pelvic attachments (and > > 's Olivia has these also). Many of these > > pelvic VEPTR kids have lumbar curves, not thoracic > > curves. The original/initial design of the VEPTR was > > to support the chest in kids with chestwall > > deformities (even missing parts of the chestwall - > > very extreme cases). However, the newer designs of > > the VEPTR are for kids with a wider range of medical > > issues, including lumbar scoliosis. > > > > Another suggestion is to investigate the Shilla > > procedure. This is new to the USA, and looks > > promising. It is similar to the growing rods in that > > two rods are placed along the spine (anchored into > > place with screws and fusion) but the middle of the > > rods have sliding screws so the spine grows and the > > rods elongate with the natural growth of the spine. > > No need for expansion surgeries every 6 months. There > > is only 2 years of followup for some of these kids, > > but it does look promising for a select type of spine > > malformation/scoliosis. Dr. McCarthy in > > Little Rock AR developed this procedure. Dr. Lenke in > > MN is one of the surgeons doing studies on kids with > > Shilla. Dr. Skaggs in LA has done one or two Shillas, > > etc. Not much on the internet to research about > > Shilla. > > > > I don't mean to overload you with rambling. I just > > want you to make sure growing rods are the right > > procedure for Max. Maybe you have a similar attitude > > we had - try something that is least invasive first. > > If that doesn't work, you can try something else (or > > even revert back to traditional fusion, if nothing > > works). Fortunately for Braydon, VEPTR has been a > > blessing. His quality of life says it all. > > > > My best, > > 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/ > > > > > > > __________________________________________________________ > _______________ > > Check out the hottest 2008 models today at Yahoo! Autos. > > http://autos.yahoo.com/new_cars.html > > > > > > > > > --------------------------------- > Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Hi Carmell, Thank you very much for the info. If you have any contact info for both docs I'd greatly appreciate it. Who did your child's VEPTR? I can't even focus at work today, I am so occupied with Max! Thanks again. Aekta > > Aekta, > > I promise to stop bugging you today, after this > email... LOL > > Shellie suggested sending Max's file to Dr. > in San for an opinion. I would also suggest > sending a copy of the file to either Dr. Emans in > Boston, or to Dr. in Salt Lake City. Drs. > Emans and are the ones who developed the pelvic > attachment VEPTRs. Dr. has done a few, but > not as many as the others. Dr. is a thoracic > insufficiency specialist. The other two have more > experience with more kinds of scoliosis in small > children. If you need contact information for any of > the docs, let me know. I may be able to help. > > Again, just my opinion here... > > Carmell > > > > > > ______________________________________________________________________ ______________ > Luggage? GPS? Comic books? > Check out fitting gifts for grads at Yahoo! Search > http://search.yahoo.com/search? fr=oni_on_mail & p=graduation+gifts & cs=bz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Hi Carmell, Thank you very much for the info. If you have any contact info for both docs I'd greatly appreciate it. Who did your child's VEPTR? I can't even focus at work today, I am so occupied with Max! Thanks again. Aekta > > Aekta, > > I promise to stop bugging you today, after this > email... LOL > > Shellie suggested sending Max's file to Dr. > in San for an opinion. I would also suggest > sending a copy of the file to either Dr. Emans in > Boston, or to Dr. in Salt Lake City. Drs. > Emans and are the ones who developed the pelvic > attachment VEPTRs. Dr. has done a few, but > not as many as the others. Dr. is a thoracic > insufficiency specialist. The other two have more > experience with more kinds of scoliosis in small > children. If you need contact information for any of > the docs, let me know. I may be able to help. > > Again, just my opinion here... > > Carmell > > > > > > ______________________________________________________________________ ______________ > Luggage? GPS? Comic books? > Check out fitting gifts for grads at Yahoo! Search > http://search.yahoo.com/search? fr=oni_on_mail & p=graduation+gifts & cs=bz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Thank you a million times over! I plan to call in 1 hour! I'll keep you posted! Aekta > > > > > > Aetka, > > > > > > <<I did ask about the VEPTER. Dr. Sturm said since > > > Max's curve is lower on his back (lumbar region), and > > > his chest wall is not compromised, he would not > > > recommend the VEPTER.>> > > > > > > I'm sorry to hear Max is not responding as well to > > > casting as you'd hoped. I can imagine how frustrated > > > you must feel. I wish I could say something that > > > would be positive or encouraging. I just wanted to > > > share a few things I know about growing rods -vs- > > > VEPTR. Max is very young still. Having growing rods > > > placed *could* stimulate bone growth that leads to a > > > natural, premature, spontaneous fusion of the spine. > > > The growing rods are placed along the spine. They are > > > anchored at the top and bottom by screws into the > > > vertebrae, and are fused into place. The area of > > > spine between the rods is actually touching the rods > > > (assuming Dr. Sturm is planning on dual growing rods, > > > not just one growing rod). This area between the > > > anchor points will stimulate bone growth because of > > > the metal touching the spine. I've heard of several > > > patients with early placement of growing rods who have > > > had early spontaneous fusion of the spine. This is > > > fusion. This prevents vertical growth of the spine > > > during those critical teenage years. > > > > > > VEPTR rods have continued to evolve. There are > > > several patients who have VEPTR rods placed on an > > > upper rib behind the collarbone in the back, and > > > attached to the pelvis on the bottom. They do not > > > touch the spine at all. I can send you some photos of > > > kids who have had these pelvic attachments (and > > > 's Olivia has these also). Many of these > > > pelvic VEPTR kids have lumbar curves, not thoracic > > > curves. The original/initial design of the VEPTR was > > > to support the chest in kids with chestwall > > > deformities (even missing parts of the chestwall - > > > very extreme cases). However, the newer designs of > > > the VEPTR are for kids with a wider range of medical > > > issues, including lumbar scoliosis. > > > > > > Another suggestion is to investigate the Shilla > > > procedure. This is new to the USA, and looks > > > promising. It is similar to the growing rods in that > > > two rods are placed along the spine (anchored into > > > place with screws and fusion) but the middle of the > > > rods have sliding screws so the spine grows and the > > > rods elongate with the natural growth of the spine. > > > No need for expansion surgeries every 6 months. There > > > is only 2 years of followup for some of these kids, > > > but it does look promising for a select type of spine > > > malformation/scoliosis. Dr. McCarthy in > > > Little Rock AR developed this procedure. Dr. Lenke in > > > MN is one of the surgeons doing studies on kids with > > > Shilla. Dr. Skaggs in LA has done one or two Shillas, > > > etc. Not much on the internet to research about > > > Shilla. > > > > > > I don't mean to overload you with rambling. I just > > > want you to make sure growing rods are the right > > > procedure for Max. Maybe you have a similar attitude > > > we had - try something that is least invasive first. > > > If that doesn't work, you can try something else (or > > > even revert back to traditional fusion, if nothing > > > works). Fortunately for Braydon, VEPTR has been a > > > blessing. His quality of life says it all. > > > > > > My best, > > > 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/ > > > > > > > > > > > __________________________________________________________ > > _______________ > > > Check out the hottest 2008 models today at Yahoo! Autos. > > > http://autos.yahoo.com/new_cars.html > > > > > > > > > > > > > > > > > --------------------------------- > > Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s > user panel and lay it on us. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Thank you a million times over! I plan to call in 1 hour! I'll keep you posted! Aekta > > > > > > Aetka, > > > > > > <<I did ask about the VEPTER. Dr. Sturm said since > > > Max's curve is lower on his back (lumbar region), and > > > his chest wall is not compromised, he would not > > > recommend the VEPTER.>> > > > > > > I'm sorry to hear Max is not responding as well to > > > casting as you'd hoped. I can imagine how frustrated > > > you must feel. I wish I could say something that > > > would be positive or encouraging. I just wanted to > > > share a few things I know about growing rods -vs- > > > VEPTR. Max is very young still. Having growing rods > > > placed *could* stimulate bone growth that leads to a > > > natural, premature, spontaneous fusion of the spine. > > > The growing rods are placed along the spine. They are > > > anchored at the top and bottom by screws into the > > > vertebrae, and are fused into place. The area of > > > spine between the rods is actually touching the rods > > > (assuming Dr. Sturm is planning on dual growing rods, > > > not just one growing rod). This area between the > > > anchor points will stimulate bone growth because of > > > the metal touching the spine. I've heard of several > > > patients with early placement of growing rods who have > > > had early spontaneous fusion of the spine. This is > > > fusion. This prevents vertical growth of the spine > > > during those critical teenage years. > > > > > > VEPTR rods have continued to evolve. There are > > > several patients who have VEPTR rods placed on an > > > upper rib behind the collarbone in the back, and > > > attached to the pelvis on the bottom. They do not > > > touch the spine at all. I can send you some photos of > > > kids who have had these pelvic attachments (and > > > 's Olivia has these also). Many of these > > > pelvic VEPTR kids have lumbar curves, not thoracic > > > curves. The original/initial design of the VEPTR was > > > to support the chest in kids with chestwall > > > deformities (even missing parts of the chestwall - > > > very extreme cases). However, the newer designs of > > > the VEPTR are for kids with a wider range of medical > > > issues, including lumbar scoliosis. > > > > > > Another suggestion is to investigate the Shilla > > > procedure. This is new to the USA, and looks > > > promising. It is similar to the growing rods in that > > > two rods are placed along the spine (anchored into > > > place with screws and fusion) but the middle of the > > > rods have sliding screws so the spine grows and the > > > rods elongate with the natural growth of the spine. > > > No need for expansion surgeries every 6 months. There > > > is only 2 years of followup for some of these kids, > > > but it does look promising for a select type of spine > > > malformation/scoliosis. Dr. McCarthy in > > > Little Rock AR developed this procedure. Dr. Lenke in > > > MN is one of the surgeons doing studies on kids with > > > Shilla. Dr. Skaggs in LA has done one or two Shillas, > > > etc. Not much on the internet to research about > > > Shilla. > > > > > > I don't mean to overload you with rambling. I just > > > want you to make sure growing rods are the right > > > procedure for Max. Maybe you have a similar attitude > > > we had - try something that is least invasive first. > > > If that doesn't work, you can try something else (or > > > even revert back to traditional fusion, if nothing > > > works). Fortunately for Braydon, VEPTR has been a > > > blessing. His quality of life says it all. > > > > > > My best, > > > 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/ > > > > > > > > > > > __________________________________________________________ > > _______________ > > > Check out the hottest 2008 models today at Yahoo! Autos. > > > http://autos.yahoo.com/new_cars.html > > > > > > > > > > > > > > > > > --------------------------------- > > Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s > user panel and lay it on us. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Hi Tasha, Thank you very much. I'm not giving up until I hit a brick wall. Hope fully by weeks end I will have soem responses from other docs. I know it'll take time to get my questions answered. I am ever so grateful for a strong support system. Thank you, Aekta > Max had his post-op on friday from his cast Miss Mehta placed on > > 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP. > > > > Not good news at all. Max's curve is at the highest ever. > > > > On 8/8/07 after 6 casts...his curve was 80 degrees out of cast. > Miss > > Mehta placed his cast and the curve was reduced to 46 degrees. > > > > Friday's in cast x-ray showed Max's curve at 66 degrees. > Basically > > this cast also did not hold Max's curve. > > > > Dr. Sturm told us after 1 full year of casting every 8 weeks, the > > curve is still progressing. His recommendation is growing rod > > surgery right after the first of the year. So Max will have more > 2 > > casts. Max is scheduled 10/9/07 for his next cast change. > > > > We knew this day was coming, but we were hopeful to buy a couple > > more years. We are grateful to have had casting as an option as > we > > were able to prolong surgery for 1 1/2 years. > > > > To make everything more challenging, I am scheduled for my c- > section > > on 12/31/07. So the first 2 months of 2008 will be very > interesting > > and challenging. Cree (Dr. Sturm's nurse) is going to talk > to > > Dr. Sturm and see if we can schedule surgery late January/early > > February so I can have some healing time from my c-section. > > > > Needless to say I was very shocked by the news on friday and > > couldn't think of 1 question to ask. If anyone has any thoughts > or > > questions that I should ask, please share. Is anyone aware of > other > > treatment options? Max does not qualify for stapling. We have a > few > > months to get all of the questions answered. > > > > I did ask about the VEPTER. Dr. Sturm said since Max's curve is > > lower on his back (lumbar region), and his chest wall is not > > compromised, he would not recommend the VEPTER. > > > > Max will be exactly 2 1/2 at the time of surgery. > > > > Thank you, > > > > Aekta > > > > > > > > > > > > > > --------------------------------- > > Yahoo! oneSearch: Finally, mobile search that gives answers, not > web links. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Hi Carmell and Shellie - Just to muddy the water a bit more... >> I was talking about the newer pelvic hybrid that is being done > (Siobhan and Olivia both have these). << Remember Carmell, Siobhan had the taken off her pelvis this year LOL!! (You came to visit us!) Siobhan now has 2 rib to laminae rods, the pelvic attachements are in her 'trophy case' Hee Hee. Jacki > > Hi Shellie, > > <<I believe Texas told me that Dr. C invented the > hybrids as well.>> > > I'll clarify what I meant. The first hybrid > (invented/designed by Dr. C and Dr. Melvin ) is a > spine support hybrid (this is what Braydon has in his > back). This is a lumbar/spine hybrid. I was talking > about the newer pelvic hybrid that is being done > (Siobhan and Olivia both have these). These were > developed by Dr. and Dr. Emans. Dr. > has done a few, but Drs. and Emans have > done more. When people talk " hybrid " , most are > referring to the pelvic attachment hybrid, not the > lumbar hybrid. Confusing, for sure. > > Sorry about that. > 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/ > > > ______________________________________________________________________ ______________ > Catch up on fall's hot new shows on Yahoo! TV. Watch previews, get listings, and more! > http://tv.yahoo.com/collections/3658 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Hi Connie Siobhan did have the " S " shaped attachements on each side of her pelvis for about a year. Dr (in Salt Lake City) believed that they were causing her stooping problem - She seemed unable to push up against them to straighten her body. For her it was just way easier to lean forward. Being tired just made it worse! We were told it was because of her weak connective tissues. Screws weren't mentioned as an option for her - Interesting..... It was decided that she would go back to the original design, and have them clipped onto the laminae - I had concerns to start with, but it turned out well, and Siobhan is doing wonderfully. Maybe if you visit the www.veptr.com forums you could ask there about pelvic screws? Just a thought...... Jacki > Hi Shellie, > > <<I believe Texas told me that Dr. C invented the > hybrids as well.>> > > I'll clarify what I meant. The first hybrid > (invented/designed by Dr. C and Dr. Melvin ) is a > spine support hybrid (this is what Braydon has in his > back). This is a lumbar/spine hybrid. I was talking > about the newer pelvic hybrid that is being done > (Siobhan and Olivia both have these). These were > developed by Dr. and Dr. Emans. Dr. > has done a few, but Drs. and Emans have > done more. When people talk " hybrid " , most are > referring to the pelvic attachment hybrid, not the > lumbar hybrid. Confusing, for sure. > > Sorry about that. > 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/ > > __________________________________________________________ > Catch up on fall's hot new shows on Yahoo! TV. Watch previews, get listings, and more! > http://tv.yahoo.com/collections/3658 > > --------------------------------- > Tonight's top picks. What will you watch tonight? Preview the hottest shows on Yahoo! TV. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Please know that you are in my thoughts and prayers. I've been SO incredibly busy lately that I've hardly had time to read the postings, let alone response, or even give an update on Brayden. But know that you are in our thoughts and so is precious little Max. Bev Forney -------------- Original message ---------------------- > Max had his post-op on friday from his cast Miss Mehta placed on > 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP. > > Not good news at all. Max's curve is at the highest ever. > > On 8/8/07 after 6 casts...his curve was 80 degrees out of cast. Miss > Mehta placed his cast and the curve was reduced to 46 degrees. > > Friday's in cast x-ray showed Max's curve at 66 degrees. Basically > this cast also did not hold Max's curve. > > Dr. Sturm told us after 1 full year of casting every 8 weeks, the > curve is still progressing. His recommendation is growing rod > surgery right after the first of the year. So Max will have more 2 > casts. Max is scheduled 10/9/07 for his next cast change. > > We knew this day was coming, but we were hopeful to buy a couple > more years. We are grateful to have had casting as an option as we > were able to prolong surgery for 1 1/2 years. > > To make everything more challenging, I am scheduled for my c-section > on 12/31/07. So the first 2 months of 2008 will be very interesting > and challenging. Cree (Dr. Sturm's nurse) is going to talk to > Dr. Sturm and see if we can schedule surgery late January/early > February so I can have some healing time from my c-section. > > Needless to say I was very shocked by the news on friday and > couldn't think of 1 question to ask. If anyone has any thoughts or > questions that I should ask, please share. Is anyone aware of other > treatment options? Max does not qualify for stapling. We have a few > months to get all of the questions answered. > > I did ask about the VEPTER. Dr. Sturm said since Max's curve is > lower on his back (lumbar region), and his chest wall is not > compromised, he would not recommend the VEPTER. > > Max will be exactly 2 1/2 at the time of surgery. > > Thank you, > > Aekta > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Thank you to everyone who has helped us. We are so grateful. Here's the latest on my search.... I spoke with Dr. 's coordinator (Salt Lake City) who said he would review Max's x-rays and provide his opinion. He is familiar with Dr. Sturm and they are both in the same VEPTR study. She said Dr. would be willing to work with Dr. Sturm on Max's case if the VEPTR is the best option for Max. So Max's x-rays are on the way to Salt Lake. I also spoke with Dr. Lenke's nurse, Joetta (Shriners St Louis). She indicated that Dr. Lenke is trained in the VEPTR, but has not performed a VEPTR. When I asked why not, she couldn't/didn't give me his reason. She was very surprised to hear of casting as a treatment method for scoliosis and very unfamiliar with it. She also said Dr. Lenke would never recommend surgery for a child so young- Max being 2 years. She said he would be more than happy to review Max's x-rays and provide his opinion. So Max's x-rays are also on the way to St. Louis. We're holding off on contacting Dr. Eman in Boston for now. I'm still contemplating contacting Dr. in TX. I may contact them tomorrow. We eagerly await these doctor's feedback and I will post once I get responses. My last question about surgery (either VEPTR/growing rod) until we hear from Dr. & Dr.Lenke: What is the youngest child that has had either growing rod or VEPTR? Every doctor we have ever talked to (even Dr. Sturm at one point) said it is not best to do surgery on a child so young. Thank you all. Aekta > > Please know that you are in my thoughts and prayers. I've been SO incredibly busy lately that I've hardly had time to read the postings, let alone response, or even give an update on Brayden. But know that you are in our thoughts and so is precious little Max. > > Bev Forney > -------------- Original message ---------------------- > > > Max had his post-op on friday from his cast Miss Mehta placed on > > 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP. > > > > Not good news at all. Max's curve is at the highest ever. > > > > On 8/8/07 after 6 casts...his curve was 80 degrees out of cast. Miss > > Mehta placed his cast and the curve was reduced to 46 degrees. > > > > Friday's in cast x-ray showed Max's curve at 66 degrees. Basically > > this cast also did not hold Max's curve. > > > > Dr. Sturm told us after 1 full year of casting every 8 weeks, the > > curve is still progressing. His recommendation is growing rod > > surgery right after the first of the year. So Max will have more 2 > > casts. Max is scheduled 10/9/07 for his next cast change. > > > > We knew this day was coming, but we were hopeful to buy a couple > > more years. We are grateful to have had casting as an option as we > > were able to prolong surgery for 1 1/2 years. > > > > To make everything more challenging, I am scheduled for my c- section > > on 12/31/07. So the first 2 months of 2008 will be very interesting > > and challenging. Cree (Dr. Sturm's nurse) is going to talk to > > Dr. Sturm and see if we can schedule surgery late January/early > > February so I can have some healing time from my c-section. > > > > Needless to say I was very shocked by the news on friday and > > couldn't think of 1 question to ask. If anyone has any thoughts or > > questions that I should ask, please share. Is anyone aware of other > > treatment options? Max does not qualify for stapling. We have a few > > months to get all of the questions answered. > > > > I did ask about the VEPTER. Dr. Sturm said since Max's curve is > > lower on his back (lumbar region), and his chest wall is not > > compromised, he would not recommend the VEPTER. > > > > Max will be exactly 2 1/2 at the time of surgery. > > > > Thank you, > > > > Aekta > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2007 Report Share Posted September 27, 2007 Carmell, You are a wealth of knowledge! Thank you. Everything you said is understandable. Remember months ago about the Reader Digest issue of the infant/toddler who had the VEPTR. Well, I remembered last night that she had the surgery done at UW Madison. That is where Max had his 1st brace Spring 2006. I know they live not too far from us, so if Max is a candidate for the VEPTR we also have a contact person here in WI! Thanks a million for all of your help. Aekta > > Hi Aekta, > > <<What is the youngest child that has had either > growing rod or VEPTR?>> > > I personally know a baby who was 10 months old when he > had VEPTR implants done. Many kids are between 18-24 > months when they have surgery. It seems that the > older the child when surgery is done, the weaker the > outcome (even tho the quality of life improvement is > great). By weaker I mean they don't have as good body > balance, they don't have as straight of spine (more > risk of rigidity the older the child is), the harder > the surgery is on them, etc. > > I also know that the variables are dynamic - you have > to weigh the pros and cons of waiting -vs- early > surgery. If you have a child with a progressive > scoliosis (rapidly progressing, documented by several > series of xrays) and there may or may not be other > medical issues complicating the matters, and > non-surgical means of " holding " the scoliosis aren't > working (etc. - there are other issues to consider) > then surgery sooner than later may be warranted. If > you have a child with a severe curve (80 degrees is > severe) and you wait longer, you have a higher curve > to try to manipulate, and you have a shorter spine in > the end. The spine ends up shorter the higher the > curve is when you have corrective/supportive surgery. > Having surgery sooner also means that generally you > have a quicker and smoother recovery (I believe body > weight makes a huge difference in recovery from > scoliosis surgery). Younger children tend to recover > faster than older kids. > > One thing that rings in my head about the comments > you've gotten from several well-respected orthos is > that they haven't moved past that early fusion theory. > " Wait as long as possible before you fuse the > spine " . Even if they are recommending growing rods, or > whatever, their thought process is old school. In > some cases, for some kids, having surgery sooner than > later is important. The outcomes are much better (ie, > straighter, more flexible spine; better overall body > balance; better lung function (for those with thoracic > curves), etc.). There are several arguments for > having surgery sooner than later. I've already told > you that had the VEPTR lumbar hybrid been perfected > when Braydon was an infant, he would have had VEPTR > surgery rather than fusion surgery before his 1st > birthday. His spine was one of those with a known > history of rapid progression. > > I think you should pose this question to Dr. and > any other doc you get an opinion from. Would be > interesting to hear what their answers are. > > My best, > 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/ > > > > _____________________________________________________________________ _______________ > Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos & more. > http://mobile.yahoo.com/go?refer=1GNXIC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 Hi Aekta, I am so sorry to hear about Max. I haven't checked my mail in a while so sorry for the delayed response. You said you would be visiting a geneticist? I am interested to know how this goes. Please know that I am thinking of you and your family. ALL we can do is the very best for our kids and that is exactly what you have done and I know you will continue to do. You are very blessed to have little Max and he is certainly blessed to have you as a mother:) Stay strong! Misty and Haley babymaxpd wrote: Max had his post-op on friday from his cast Miss Mehta placed on 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP. Not good news at all. Max's curve is at the highest ever. On 8/8/07 after 6 casts...his curve was 80 degrees out of cast. Miss Mehta placed his cast and the curve was reduced to 46 degrees. Friday's in cast x-ray showed Max's curve at 66 degrees. Basically this cast also did not hold Max's curve. Dr. Sturm told us after 1 full year of casting every 8 weeks, the curve is still progressing. His recommendation is growing rod surgery right after the first of the year. So Max will have more 2 casts. Max is scheduled 10/9/07 for his next cast change. We knew this day was coming, but we were hopeful to buy a couple more years. We are grateful to have had casting as an option as we were able to prolong surgery for 1 1/2 years. To make everything more challenging, I am scheduled for my c-section on 12/31/07. So the first 2 months of 2008 will be very interesting and challenging. Cree (Dr. Sturm's nurse) is going to talk to Dr. Sturm and see if we can schedule surgery late January/early February so I can have some healing time from my c-section. Needless to say I was very shocked by the news on friday and couldn't think of 1 question to ask. If anyone has any thoughts or questions that I should ask, please share. Is anyone aware of other treatment options? Max does not qualify for stapling. We have a few months to get all of the questions answered. I did ask about the VEPTER. Dr. Sturm said since Max's curve is lower on his back (lumbar region), and his chest wall is not compromised, he would not recommend the VEPTER. Max will be exactly 2 1/2 at the time of surgery. Thank you, Aekta --------------------------------- Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 Hi Misty, Thank you for your wishes. We are eagerly awaiting a response from Dr. in Salt Lake Caty to get his opinion for surgery (growing rod vs VEPTR). I will keep everyone posted. In the meantime we are focused on Max's next cast change a week from tuesday! Aekta > Max had his post-op on friday from his cast Miss Mehta placed on > 8/9/07 in Shriners Chicago/Dr. Sturm who hosted the ETP. > > Not good news at all. Max's curve is at the highest ever. > > On 8/8/07 after 6 casts...his curve was 80 degrees out of cast. Miss > Mehta placed his cast and the curve was reduced to 46 degrees. > > Friday's in cast x-ray showed Max's curve at 66 degrees. Basically > this cast also did not hold Max's curve. > > Dr. Sturm told us after 1 full year of casting every 8 weeks, the > curve is still progressing. His recommendation is growing rod > surgery right after the first of the year. So Max will have more 2 > casts. Max is scheduled 10/9/07 for his next cast change. > > We knew this day was coming, but we were hopeful to buy a couple > more years. We are grateful to have had casting as an option as we > were able to prolong surgery for 1 1/2 years. > > To make everything more challenging, I am scheduled for my c- section > on 12/31/07. So the first 2 months of 2008 will be very interesting > and challenging. Cree (Dr. Sturm's nurse) is going to talk to > Dr. Sturm and see if we can schedule surgery late January/early > February so I can have some healing time from my c-section. > > Needless to say I was very shocked by the news on friday and > couldn't think of 1 question to ask. If anyone has any thoughts or > questions that I should ask, please share. Is anyone aware of other > treatment options? Max does not qualify for stapling. We have a few > months to get all of the questions answered. > > I did ask about the VEPTER. Dr. Sturm said since Max's curve is > lower on his back (lumbar region), and his chest wall is not > compromised, he would not recommend the VEPTER. > > Max will be exactly 2 1/2 at the time of surgery. > > Thank you, > > Aekta > > > > > > > --------------------------------- > Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. > > Quote Link to comment Share on other sites More sharing options...
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