Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Hello all...I don't have the time to participate on the egroup very often, but I wanted to share our scoliosis experience since it seems to be a current topic. Our son, , has been treated for scoliosis since he was 2 or 3 years old. He wore a brace for many years until the ortho said it wasn't really accomplishing anything so he might as well have a better quality of life. It was so hot in the summer time and restricted his movement pretty significantly. Anyway...his curve has gotten much worse over the past couple of years. It is now almost 75 degrees curved and we've reached a critical point since he'll begin to get lung compromise if it gets any worse. So, he's having surgery on Tuesday in San (we're in Houston). It's called VEPTR surgery standing for Vertical Expandable Prosthetic Titanium Rib. This is not typical rod surgery where the spine is fused. Even though is 14, his bone age is only 8 so he still has potential for growth which would be lost if his spine was fused. This surgery involves expandable rods which can be adjusted as he grows. He may still need spinal fusion after he's finished growing. We've been working to get this surgery scheduled for the past 18 months which has involved jumping through many hoops. The doctor who co-created this surgery is in San and travels all over the world training other surgeons. You'd think somebody in this great medical complex we have in Houston would do it, but noooooo...they just send everybody to San . So, we'll be heading there for surgery next week. We've been told to plan on being there for a couple of weeks, but we're hoping it will be less than that. Not sure that this explains very much, but I do hear about scoliosis being a problem for more and more children and young adults with CHARGE. It is usually the result of low trunk muscle tone and not the ideopathic kind of scoliosis that teenage girls get. Hope this info helps. If you want to learn more about the VEPTR surgery, there is a website with info and parent forums at www.veptr.com. Brownie Shott Publisher, Coffee News & Front Desk USA P. O. Box 218894, Houston, TX 77218 fax: www.CoffeeNewsHouston.com http://www.coffeenewshouston.com/> www.FrontDeskUSA.com http://www.frontdeskusa.com/> " If you want your ad to have the most views, put it in the Coffee News. " Quote Link to comment Share on other sites More sharing options...
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