Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Hi Shellie, Would you by chance have a contact phone number and contact name of a person I can speak with regarding Dr. reviewing Max's records. Is there a list of docs that do the VEPTR? I know Dr. would be the best. Thank you for your help and support. 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...
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