Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 Brownie, Will be thinking of you all.. just wish two weeks in SA were for a vacation.. I love that town.. Casey ________________________________________________________________________________\ ____ Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2007 Report Share Posted June 13, 2007 Brownie, I am so happy you jumped in here!! pam > > > > > 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...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 Good for ! Obviously very brave, both Mother and son. This surgery sounds very impressive. in Ma. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 Brownie, This is just wonderful wonderful news about . I'm so glad that you have been able to share this information because I'm sure many families will not be aware of this option and will be only open to the fusion option. I can't wait to see a new picture of tall ! > > Wow this is fascinating stuff about scoliosis and the CHD7 gene. It > makes me feel like our kids helped make a huge scientific contribution > that can help others. If the CHARGE gene hadn't been discovered they > might not have thought to look at that gene for scoliosis. It is a > little ironic though since most of our kids have neuromuscular > scoliosis and not ideopathic scoliosis. Anyway, it's good news! > > Just a quick update on 's scoliosis surgery. It was a huge > success and we're now back home. He was a real trooper and is > continuing to improve every day. He did everything faster than most > kids who have this surgery (including getting off the vent, getting > out of ICU and going home) somewhat in part due to the fact that he > didn't go into the surgery with the lung compromises that many of the > children already have. He is more than 2 inches taller and so > straight! Even his kyphosis has all but disappeared. He's still > figuring out how to turn over and bend and regain his balance, but > these are temporary as he figures out how his body is located in space > all over again. He has two long rods that go from his top two ribs > down to his pelvis. The rods will be extended slightly in length every > 6 months or so. These extensions will involve much less invasive > surgery and will continue to straighen his spine. Meanwhile, his > growth isn't restricted as it would have been had he had a spinal > fusion. This was a really nerve wracking experience for us, but with > it behind us, we are thrilled that we did it and confident that it was > the right decision. It sure reinforced our concerns about his lack of > a formal communication system. It was so hard to know when he was in > pain or just anxious or just what was going on. It will sure kick us > into high gear to work on finding more ways for him to communicate. > > > Brownie Shott > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 Brownie, How wonderful this is over and is doing so well. Breathe now! pam > > > > > Wow this is fascinating stuff about scoliosis and the CHD7 gene. It > makes me feel like our kids helped make a huge scientific contribution > that can help others. If the CHARGE gene hadn't been discovered they > might not have thought to look at that gene for scoliosis. It is a > little ironic though since most of our kids have neuromuscular > scoliosis and not ideopathic scoliosis. Anyway, it's good news! > > Just a quick update on 's scoliosis surgery. It was a huge > success and we're now back home. He was a real trooper and is > continuing to improve every day. He did everything faster than most > kids who have this surgery (including getting off the vent, getting > out of ICU and going home) somewhat in part due to the fact that he > didn't go into the surgery with the lung compromises that many of the > children already have. He is more than 2 inches taller and so > straight! Even his kyphosis has all but disappeared. He's still > figuring out how to turn over and bend and regain his balance, but > these are temporary as he figures out how his body is located in space > all over again. He has two long rods that go from his top two ribs > down to his pelvis. The rods will be extended slightly in length every > 6 months or so. These extensions will involve much less invasive > surgery and will continue to straighen his spine. Meanwhile, his > growth isn't restricted as it would have been had he had a spinal > fusion. This was a really nerve wracking experience for us, but with > it behind us, we are thrilled that we did it and confident that it was > the right decision. It sure reinforced our concerns about his lack of > a formal communication system. It was so hard to know when he was in > pain or just anxious or just what was going on. It will sure kick us > into high gear to work on finding more ways for him to communicate. > > > Brownie Shott > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 Brownie: That is amazing - 2 inches!! And you are back home already. That is just great! I'm sure is happier there than away. Sometimes being home is the best answer to health things. (And probably a lot better for your peace of mind, too!) I know how you feel about the CHD7 gene things and feeling we've helped in a way. I just couldn't really think how to express it. Amazing things, those genes. Friends in CHARGE, Marilyn Ogan _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Brownie Shott Sent: Wednesday, June 27, 2007 10:08 AM To: CHARGE Subject: Scoliosis Wow this is fascinating stuff about scoliosis and the CHD7 gene. It makes me feel like our kids helped make a huge scientific contribution that can help others. If the CHARGE gene hadn't been discovered they might not have thought to look at that gene for scoliosis. It is a little ironic though since most of our kids have neuromuscular scoliosis and not ideopathic scoliosis. Anyway, it's good news! Just a quick update on 's scoliosis surgery. It was a huge success and we're now back home. He was a real trooper and is continuing to improve every day. He did everything faster than most kids who have this surgery (including getting off the vent, getting out of ICU and going home) somewhat in part due to the fact that he didn't go into the surgery with the lung compromises that many of the children already have. He is more than 2 inches taller and so straight! Even his kyphosis has all but disappeared. He's still figuring out how to turn over and bend and regain his balance, but these are temporary as he figures out how his body is located in space all over again. He has two long rods that go from his top two ribs down to his pelvis. The rods will be extended slightly in length every 6 months or so. These extensions will involve much less invasive surgery and will continue to straighen his spine. Meanwhile, his growth isn't restricted as it would have been had he had a spinal fusion. This was a really nerve wracking experience for us, but with it behind us, we are thrilled that we did it and confident that it was the right decision. It sure reinforced our concerns about his lack of a formal communication system. It was so hard to know when he was in pain or just anxious or just what was going on. It will sure kick us into high gear to work on finding more ways for him to communicate. Brownie Shott Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 Brownie- I am delighted to hear how well 's surgery and recovery are going!!!!!! You know, this sounds like a cutting edge amazing procedure. Our kids are living in good times, medically speaking. Hoping for more good stuff as continues to heal, grow, and find his way in space - oh, and make great communication gains too, right?! Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
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