Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Have you researched or looked into VEPTR at all? There are several parents on here who have experience with this procedure and can help you locate a doctor who might be able to evaluate her. I am sure they will chime in when they see your post. Noelle (12-2-01) Ian (8-15-04) who is 5 I am not quite sure how to use this system but I am try to find other options for my daughter. I am trying to reach other parents for suggestions. is in critical stage with her back and has already had surgeries that were not successful. She also has Moebius Syndrome which we think contributes to the problem. has had 4 opinions from Doctors from Boston to Texas. Halo-traction was an option, body casting, another kind of growing rod, or nothing....there are some little procedures in between these ideas but I am looking for other opinions and/or options. If you have any advice, it would be much appreciated. Doctor gave is 6 months to come up with our answer! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Have you spoke with , the founder of ISOP? She is very resourceful and I know her daughter has VEPTR rods and has had the halo traction and is doing well. Best of luck. Rochelle mom of Devyn 21months Scoliosis, Chiari1. Tiffanni 9yrs ADHD. Dominic 6yrs ADHD. > > I am not quite sure how to use this system but I am try to find other > options for my daughter. I am trying to reach other parents for > suggestions. is in critical stage with her back and has already > had surgeries that were not successful. She also has Moebius Syndrome > which we think contributes to the problem. has had 4 opinions > from Doctors from Boston to Texas. Halo-traction was an option, body > casting, another kind of growing rod, or nothing....there are some > little procedures in between these ideas but I am looking for other > opinions and/or options. If you have any advice, it would be much > appreciated. Doctor gave is 6 months to come up with our answer! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi, ISOP is the Infantile Scoliosis Outreach Program, and the website is infantilescoliosis.org. You will find good info there and 's contact information. I am sorry I cannot help you more, but you have a good group of parents who can help with support and experience. My heart aches for you and your child . ~ who is 5 ? ISOP? I am not sure how to contact her, but would love to talk with her about the VEPTR. Our doctor says " NO " to that but yes to the Halo traction, on and off until she is 8, should I get another opinion on the VEPTR? Every opinion I have been able to get through 's portfolio are all different. I still have yet to find two doctors that have similar ideas to s back. I would like to know more about the casting. can not walk, but short distances, mostly wheelchair or crawling. So my issues with this idea is mobility??? I also have found that many doctors are using different rod methods, depending on their training. Know of any doctors who might be interested in looking at 's portfolio? s back was corrected with the rods the first time from 80 to 10 degrees. Now with the rods out and is getting older, I beleive it's 100 now. The two doctors here say that the worse they have been able to work on is 120. If that makes any sense. ________________________________________________________________________________\ ____ Park yourself in front of a world of choices in alternative vehicles. Visit the Yahoo! Auto Green Center. http://autos.yahoo.com/green_center/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi, ISOP is the Infantile Scoliosis Outreach Program, and the website is infantilescoliosis.org. You will find good info there and 's contact information. I am sorry I cannot help you more, but you have a good group of parents who can help with support and experience. My heart aches for you and your child . ~ who is 5 ? ISOP? I am not sure how to contact her, but would love to talk with her about the VEPTR. Our doctor says " NO " to that but yes to the Halo traction, on and off until she is 8, should I get another opinion on the VEPTR? Every opinion I have been able to get through 's portfolio are all different. I still have yet to find two doctors that have similar ideas to s back. I would like to know more about the casting. can not walk, but short distances, mostly wheelchair or crawling. So my issues with this idea is mobility??? I also have found that many doctors are using different rod methods, depending on their training. Know of any doctors who might be interested in looking at 's portfolio? s back was corrected with the rods the first time from 80 to 10 degrees. Now with the rods out and is getting older, I beleive it's 100 now. The two doctors here say that the worse they have been able to work on is 120. If that makes any sense. ________________________________________________________________________________\ ____ Park yourself in front of a world of choices in alternative vehicles. Visit the Yahoo! Auto Green Center. http://autos.yahoo.com/green_center/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi, ISOP is the Infantile Scoliosis Outreach Program, and the website is infantilescoliosis.org. You will find good info there and 's contact information. I am sorry I cannot help you more, but you have a good group of parents who can help with support and experience. My heart aches for you and your child . ~ who is 5 ? ISOP? I am not sure how to contact her, but would love to talk with her about the VEPTR. Our doctor says " NO " to that but yes to the Halo traction, on and off until she is 8, should I get another opinion on the VEPTR? Every opinion I have been able to get through 's portfolio are all different. I still have yet to find two doctors that have similar ideas to s back. I would like to know more about the casting. can not walk, but short distances, mostly wheelchair or crawling. So my issues with this idea is mobility??? I also have found that many doctors are using different rod methods, depending on their training. Know of any doctors who might be interested in looking at 's portfolio? s back was corrected with the rods the first time from 80 to 10 degrees. Now with the rods out and is getting older, I beleive it's 100 now. The two doctors here say that the worse they have been able to work on is 120. If that makes any sense. ________________________________________________________________________________\ ____ Park yourself in front of a world of choices in alternative vehicles. Visit the Yahoo! Auto Green Center. http://autos.yahoo.com/green_center/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi Momma, Sorry I didn't catch your name. It is late, putting the kids to bed. I want to look up Moebius Syndrome and get some background on . I will say that if she is tiny, not enough meat on her bones, and her bones are not that strong she may or may not be a VEPTR candidate. It sounds like with such a complicated case, the only one who could determine that would be the inventor, Dr. in San , Texas. He takes many difficult cases. DR. in Salt Lake City also handles some hard cases. Have you contacted them yet? I know of one other girl who had brittle bones who had the VEPTR. She did have many complications. Is 's scoliosis due to any structural problems such as malformed vertebrae in her spine, or any neurological factors that affect her spinal column? Traction will help reduce her curve if her spine is flexible enough. However, you want to have a game plan for after traction. Where do you guys live? Go to www.infantilescoliosis.org. The website has info on Early Treatment with casting (it may help her despite her age to maintain), and in the information section you will find to documents, one on Traction one on the VEPTR. I have to take my daughter Moriah for an xray, but I will try to get back on the group tomorrow afternoon. Her story is also posted on the website. You are doing well to not give up and keep searching for the answer for . Pray alot!!!! Talk to you tomorrow. Shellie Grant havetolovelife wrote: Yes! the DR. here in NC (Dr. Shilt) said that would not be a good canidate for the VEPTR. She is so tiny, not enough skin, bones are not that strong, ect. Since she already had a set of growing rods, he doesn't think the VEPTR will work. The rods she had, literally came away from her spine and was sticking out her back,we saw the serial numbers! And it didn't seem to bother ?! --------------------------------- Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi Momma, Sorry I didn't catch your name. It is late, putting the kids to bed. I want to look up Moebius Syndrome and get some background on . I will say that if she is tiny, not enough meat on her bones, and her bones are not that strong she may or may not be a VEPTR candidate. It sounds like with such a complicated case, the only one who could determine that would be the inventor, Dr. in San , Texas. He takes many difficult cases. DR. in Salt Lake City also handles some hard cases. Have you contacted them yet? I know of one other girl who had brittle bones who had the VEPTR. She did have many complications. Is 's scoliosis due to any structural problems such as malformed vertebrae in her spine, or any neurological factors that affect her spinal column? Traction will help reduce her curve if her spine is flexible enough. However, you want to have a game plan for after traction. Where do you guys live? Go to www.infantilescoliosis.org. The website has info on Early Treatment with casting (it may help her despite her age to maintain), and in the information section you will find to documents, one on Traction one on the VEPTR. I have to take my daughter Moriah for an xray, but I will try to get back on the group tomorrow afternoon. Her story is also posted on the website. You are doing well to not give up and keep searching for the answer for . Pray alot!!!! Talk to you tomorrow. Shellie Grant havetolovelife wrote: Yes! the DR. here in NC (Dr. Shilt) said that would not be a good canidate for the VEPTR. She is so tiny, not enough skin, bones are not that strong, ect. Since she already had a set of growing rods, he doesn't think the VEPTR will work. The rods she had, literally came away from her spine and was sticking out her back,we saw the serial numbers! And it didn't seem to bother ?! --------------------------------- Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi Momma, Sorry I didn't catch your name. It is late, putting the kids to bed. I want to look up Moebius Syndrome and get some background on . I will say that if she is tiny, not enough meat on her bones, and her bones are not that strong she may or may not be a VEPTR candidate. It sounds like with such a complicated case, the only one who could determine that would be the inventor, Dr. in San , Texas. He takes many difficult cases. DR. in Salt Lake City also handles some hard cases. Have you contacted them yet? I know of one other girl who had brittle bones who had the VEPTR. She did have many complications. Is 's scoliosis due to any structural problems such as malformed vertebrae in her spine, or any neurological factors that affect her spinal column? Traction will help reduce her curve if her spine is flexible enough. However, you want to have a game plan for after traction. Where do you guys live? Go to www.infantilescoliosis.org. The website has info on Early Treatment with casting (it may help her despite her age to maintain), and in the information section you will find to documents, one on Traction one on the VEPTR. I have to take my daughter Moriah for an xray, but I will try to get back on the group tomorrow afternoon. Her story is also posted on the website. You are doing well to not give up and keep searching for the answer for . Pray alot!!!! Talk to you tomorrow. Shellie Grant havetolovelife wrote: Yes! the DR. here in NC (Dr. Shilt) said that would not be a good canidate for the VEPTR. She is so tiny, not enough skin, bones are not that strong, ect. Since she already had a set of growing rods, he doesn't think the VEPTR will work. The rods she had, literally came away from her spine and was sticking out her back,we saw the serial numbers! And it didn't seem to bother ?! --------------------------------- Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 If you go to infantilescoliosis.org and go to the contacts page there is a 800 number to call. usually calls back in 24hours. Have you tried to contact a shriners hospital. They usually will have you send your childs portfolio. I know other parents on the sight will know who you should contact. Also has information as well. Rochelle > > ? ISOP? I am not sure how to contact her, but would love to > talk with her about the VEPTR. Our doctor says " NO " to that but yes to > the Halo traction, on and off until she is 8, should I get another > opinion on the VEPTR? Every opinion I have been able to get through > 's portfolio are all different. I still have yet to find two > doctors that have similar ideas to s back. I would like to know > more about the casting. can not walk, but short distances, > mostly wheelchair or crawling. So my issues with this idea is > mobility??? I also have found that many doctors are using different > rod methods, depending on their training. Know of any doctors who > might be interested in looking at 's portfolio? s back was > corrected with the rods the first time from 80 to 10 degrees. Now > with the rods out and is getting older, I beleive it's 100 now. > The two doctors here say that the worse they have been able to work on > is 120. If that makes any sense. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 If you go to infantilescoliosis.org and go to the contacts page there is a 800 number to call. usually calls back in 24hours. Have you tried to contact a shriners hospital. They usually will have you send your childs portfolio. I know other parents on the sight will know who you should contact. Also has information as well. Rochelle > > ? ISOP? I am not sure how to contact her, but would love to > talk with her about the VEPTR. Our doctor says " NO " to that but yes to > the Halo traction, on and off until she is 8, should I get another > opinion on the VEPTR? Every opinion I have been able to get through > 's portfolio are all different. I still have yet to find two > doctors that have similar ideas to s back. I would like to know > more about the casting. can not walk, but short distances, > mostly wheelchair or crawling. So my issues with this idea is > mobility??? I also have found that many doctors are using different > rod methods, depending on their training. Know of any doctors who > might be interested in looking at 's portfolio? s back was > corrected with the rods the first time from 80 to 10 degrees. Now > with the rods out and is getting older, I beleive it's 100 now. > The two doctors here say that the worse they have been able to work on > is 120. If that makes any sense. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 If you go to infantilescoliosis.org and go to the contacts page there is a 800 number to call. usually calls back in 24hours. Have you tried to contact a shriners hospital. They usually will have you send your childs portfolio. I know other parents on the sight will know who you should contact. Also has information as well. Rochelle > > ? ISOP? I am not sure how to contact her, but would love to > talk with her about the VEPTR. Our doctor says " NO " to that but yes to > the Halo traction, on and off until she is 8, should I get another > opinion on the VEPTR? Every opinion I have been able to get through > 's portfolio are all different. I still have yet to find two > doctors that have similar ideas to s back. I would like to know > more about the casting. can not walk, but short distances, > mostly wheelchair or crawling. So my issues with this idea is > mobility??? I also have found that many doctors are using different > rod methods, depending on their training. Know of any doctors who > might be interested in looking at 's portfolio? s back was > corrected with the rods the first time from 80 to 10 degrees. Now > with the rods out and is getting older, I beleive it's 100 now. > The two doctors here say that the worse they have been able to work on > is 120. If that makes any sense. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi, Shellie here, I looked up Moebius Syndrome. I had never heard of it before. I was wondering if has a feeding tube and if the syndrome had affected her back at all (rigidity). If she went from 80 to 10 with a surgery she sounds flexible. Again, I personally only know of Dr. in San Texas and Dr. in SLC Utah who have handled really tough cases for VEPTRs. Texas does not have a halo traction program as far as I know. You would have to do that near home if that is the plan. SLC Shriners has a fabulous halo program and Dr. is right across the street at Primary Childrens. Just some thoughts. Glad you have found this group. Keep asking questions. has a DVD you can request on the casting. The button is inthe information section of the website. Shellie Grant havetolovelife wrote: ? ISOP? I am not sure how to contact her, but would love to talk with her about the VEPTR. Our doctor says " NO " to that but yes to the Halo traction, on and off until she is 8, should I get another opinion on the VEPTR? Every opinion I have been able to get through 's portfolio are all different. I still have yet to find two doctors that have similar ideas to s back. I would like to know more about the casting. can not walk, but short distances, mostly wheelchair or crawling. So my issues with this idea is mobility??? I also have found that many doctors are using different rod methods, depending on their training. Know of any doctors who might be interested in looking at 's portfolio? s back was corrected with the rods the first time from 80 to 10 degrees. Now with the rods out and is getting older, I beleive it's 100 now. The two doctors here say that the worse they have been able to work on is 120. If that makes any sense. --------------------------------- Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi, Shellie here, I looked up Moebius Syndrome. I had never heard of it before. I was wondering if has a feeding tube and if the syndrome had affected her back at all (rigidity). If she went from 80 to 10 with a surgery she sounds flexible. Again, I personally only know of Dr. in San Texas and Dr. in SLC Utah who have handled really tough cases for VEPTRs. Texas does not have a halo traction program as far as I know. You would have to do that near home if that is the plan. SLC Shriners has a fabulous halo program and Dr. is right across the street at Primary Childrens. Just some thoughts. Glad you have found this group. Keep asking questions. has a DVD you can request on the casting. The button is inthe information section of the website. Shellie Grant havetolovelife wrote: ? ISOP? I am not sure how to contact her, but would love to talk with her about the VEPTR. Our doctor says " NO " to that but yes to the Halo traction, on and off until she is 8, should I get another opinion on the VEPTR? Every opinion I have been able to get through 's portfolio are all different. I still have yet to find two doctors that have similar ideas to s back. I would like to know more about the casting. can not walk, but short distances, mostly wheelchair or crawling. So my issues with this idea is mobility??? I also have found that many doctors are using different rod methods, depending on their training. Know of any doctors who might be interested in looking at 's portfolio? s back was corrected with the rods the first time from 80 to 10 degrees. Now with the rods out and is getting older, I beleive it's 100 now. The two doctors here say that the worse they have been able to work on is 120. If that makes any sense. --------------------------------- Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi, Shellie here, I looked up Moebius Syndrome. I had never heard of it before. I was wondering if has a feeding tube and if the syndrome had affected her back at all (rigidity). If she went from 80 to 10 with a surgery she sounds flexible. Again, I personally only know of Dr. in San Texas and Dr. in SLC Utah who have handled really tough cases for VEPTRs. Texas does not have a halo traction program as far as I know. You would have to do that near home if that is the plan. SLC Shriners has a fabulous halo program and Dr. is right across the street at Primary Childrens. Just some thoughts. Glad you have found this group. Keep asking questions. has a DVD you can request on the casting. The button is inthe information section of the website. Shellie Grant havetolovelife wrote: ? ISOP? I am not sure how to contact her, but would love to talk with her about the VEPTR. Our doctor says " NO " to that but yes to the Halo traction, on and off until she is 8, should I get another opinion on the VEPTR? Every opinion I have been able to get through 's portfolio are all different. I still have yet to find two doctors that have similar ideas to s back. I would like to know more about the casting. can not walk, but short distances, mostly wheelchair or crawling. So my issues with this idea is mobility??? I also have found that many doctors are using different rod methods, depending on their training. Know of any doctors who might be interested in looking at 's portfolio? s back was corrected with the rods the first time from 80 to 10 degrees. Now with the rods out and is getting older, I beleive it's 100 now. The two doctors here say that the worse they have been able to work on is 120. If that makes any sense. --------------------------------- Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hey Shellie, does have a feeding tube! The Dr. in Texas was wanting to do the casting.The pictures I seen of the kids who did have the casting look really great. s back looks wose then those kids that I have seen, so I am not quite sure that casting is the way to go. Nor am I sure another kind of growing rod either. It's like " which door of Hell do I want to put my daughter through this time? " All the options so far are not what I was looking for. I am looking in going back to Shriners in SC. The last time we went there was when was 3 years old and they said to go back to Dr. Shilt b/c he was the best on the East Coast for what he does. s back is very flexible so that is a plus for us. Thank you for you input! Shellie Grant wrote: Hi, Shellie here, I looked up Moebius Syndrome. I had never heard of it before. I was wondering if has a feeding tube and if the syndrome had affected her back at all (rigidity). If she went from 80 to 10 with a surgery she sounds flexible. Again, I personally only know of Dr. in San Texas and Dr. in SLC Utah who have handled really tough cases for VEPTRs. Texas does not have a halo traction program as far as I know. You would have to do that near home if that is the plan. SLC Shriners has a fabulous halo program and Dr. is right across the street at Primary Childrens. Just some thoughts. Glad you have found this group. Keep asking questions. has a DVD you can request on the casting. The button is inthe information section of the website. Shellie Grant havetolovelife wrote: ? ISOP? I am not sure how to contact her, but would love to talk with her about the VEPTR. Our doctor says " NO " to that but yes to the Halo traction, on and off until she is 8, should I get another opinion on the VEPTR? Every opinion I have been able to get through 's portfolio are all different. I still have yet to find two doctors that have similar ideas to s back. I would like to know more about the casting. can not walk, but short distances, mostly wheelchair or crawling. So my issues with this idea is mobility??? I also have found that many doctors are using different rod methods, depending on their training. Know of any doctors who might be interested in looking at 's portfolio? s back was corrected with the rods the first time from 80 to 10 degrees. Now with the rods out and is getting older, I beleive it's 100 now. The two doctors here say that the worse they have been able to work on is 120. If that makes any sense. --------------------------------- Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hey Shellie, does have a feeding tube! The Dr. in Texas was wanting to do the casting.The pictures I seen of the kids who did have the casting look really great. s back looks wose then those kids that I have seen, so I am not quite sure that casting is the way to go. Nor am I sure another kind of growing rod either. It's like " which door of Hell do I want to put my daughter through this time? " All the options so far are not what I was looking for. I am looking in going back to Shriners in SC. The last time we went there was when was 3 years old and they said to go back to Dr. Shilt b/c he was the best on the East Coast for what he does. s back is very flexible so that is a plus for us. Thank you for you input! Shellie Grant wrote: Hi, Shellie here, I looked up Moebius Syndrome. I had never heard of it before. I was wondering if has a feeding tube and if the syndrome had affected her back at all (rigidity). If she went from 80 to 10 with a surgery she sounds flexible. Again, I personally only know of Dr. in San Texas and Dr. in SLC Utah who have handled really tough cases for VEPTRs. Texas does not have a halo traction program as far as I know. You would have to do that near home if that is the plan. SLC Shriners has a fabulous halo program and Dr. is right across the street at Primary Childrens. Just some thoughts. Glad you have found this group. Keep asking questions. has a DVD you can request on the casting. The button is inthe information section of the website. Shellie Grant havetolovelife wrote: ? ISOP? I am not sure how to contact her, but would love to talk with her about the VEPTR. Our doctor says " NO " to that but yes to the Halo traction, on and off until she is 8, should I get another opinion on the VEPTR? Every opinion I have been able to get through 's portfolio are all different. I still have yet to find two doctors that have similar ideas to s back. I would like to know more about the casting. can not walk, but short distances, mostly wheelchair or crawling. So my issues with this idea is mobility??? I also have found that many doctors are using different rod methods, depending on their training. Know of any doctors who might be interested in looking at 's portfolio? s back was corrected with the rods the first time from 80 to 10 degrees. Now with the rods out and is getting older, I beleive it's 100 now. The two doctors here say that the worse they have been able to work on is 120. If that makes any sense. --------------------------------- Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hey Shellie, does have a feeding tube! The Dr. in Texas was wanting to do the casting.The pictures I seen of the kids who did have the casting look really great. s back looks wose then those kids that I have seen, so I am not quite sure that casting is the way to go. Nor am I sure another kind of growing rod either. It's like " which door of Hell do I want to put my daughter through this time? " All the options so far are not what I was looking for. I am looking in going back to Shriners in SC. The last time we went there was when was 3 years old and they said to go back to Dr. Shilt b/c he was the best on the East Coast for what he does. s back is very flexible so that is a plus for us. Thank you for you input! Shellie Grant wrote: Hi, Shellie here, I looked up Moebius Syndrome. I had never heard of it before. I was wondering if has a feeding tube and if the syndrome had affected her back at all (rigidity). If she went from 80 to 10 with a surgery she sounds flexible. Again, I personally only know of Dr. in San Texas and Dr. in SLC Utah who have handled really tough cases for VEPTRs. Texas does not have a halo traction program as far as I know. You would have to do that near home if that is the plan. SLC Shriners has a fabulous halo program and Dr. is right across the street at Primary Childrens. Just some thoughts. Glad you have found this group. Keep asking questions. has a DVD you can request on the casting. The button is inthe information section of the website. Shellie Grant havetolovelife wrote: ? ISOP? I am not sure how to contact her, but would love to talk with her about the VEPTR. Our doctor says " NO " to that but yes to the Halo traction, on and off until she is 8, should I get another opinion on the VEPTR? Every opinion I have been able to get through 's portfolio are all different. I still have yet to find two doctors that have similar ideas to s back. I would like to know more about the casting. can not walk, but short distances, mostly wheelchair or crawling. So my issues with this idea is mobility??? I also have found that many doctors are using different rod methods, depending on their training. Know of any doctors who might be interested in looking at 's portfolio? s back was corrected with the rods the first time from 80 to 10 degrees. Now with the rods out and is getting older, I beleive it's 100 now. The two doctors here say that the worse they have been able to work on is 120. If that makes any sense. --------------------------------- Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi! My son, Braydon, is a VEPTR patient. He had VEPTR implant surgery 6 years ago. He is doing very well. VEPTR is one of several options now available (grateful for advances in medical technology!). I agree with the others that needs to be evaluated by an expert VEPTR surgeon - either Drs. , Emans (in Boston), (in SLC) or Betz (in Philly). There are some other docs who are doing great things (not VEPTR) for young children with complex spine issues (ie, Dr. Skaggs in LA, Dr. Newton in San Diego, Dr. Song in Seattle, and several docs in the NYC area. However, not sure you want your to be an " experiment " with something very permanent. The great thing about VEPTR is that it can be NOT permanent (how's that for poor grammer?). They can be removed if necessary. VEPTR is NOT like growing rods. They are not placed along the spine like growing rods. The risk of spontaneous fusion is not there with VEPTRs, things like that. They can also support the entire torso, not just the spine (ie, chest, balance, etc.). My point is that if were my daughter, I would take her to a VEPTR surgeon for another evaluation. I would also know that going into the evaluation, her options are limited because of her body's condition and the many variables involved. Not every patient with a bad spine is a candidate for VEPTR treatment. You know that, so hopefully you can discuss what options ARE available. Like Shellie said, Shriners in SLC has patients from all over the world come for halo treatment and followup care/surgery. Dr. in SLC is Braydon's ortho. I trust him with my son's life. Period. He would give you good information and facts about what options are good for , if any. We are all parents here who have had various experiences with our kids. We don't have 's medical history in front of us, so we can only share what experiences we know about. You get to make those decisions for her. I wish you the best, and would be happy to share more of our VEPTR (and surgical fusion) experiences if you'd like. Take care and I look forward to reading more about . Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, 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/ ________________________________________________________________________________\ ____ Be a better Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers - Check it out. http://answers.yahoo.com/dir/?link=list & sid=396545469 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi! My son, Braydon, is a VEPTR patient. He had VEPTR implant surgery 6 years ago. He is doing very well. VEPTR is one of several options now available (grateful for advances in medical technology!). I agree with the others that needs to be evaluated by an expert VEPTR surgeon - either Drs. , Emans (in Boston), (in SLC) or Betz (in Philly). There are some other docs who are doing great things (not VEPTR) for young children with complex spine issues (ie, Dr. Skaggs in LA, Dr. Newton in San Diego, Dr. Song in Seattle, and several docs in the NYC area. However, not sure you want your to be an " experiment " with something very permanent. The great thing about VEPTR is that it can be NOT permanent (how's that for poor grammer?). They can be removed if necessary. VEPTR is NOT like growing rods. They are not placed along the spine like growing rods. The risk of spontaneous fusion is not there with VEPTRs, things like that. They can also support the entire torso, not just the spine (ie, chest, balance, etc.). My point is that if were my daughter, I would take her to a VEPTR surgeon for another evaluation. I would also know that going into the evaluation, her options are limited because of her body's condition and the many variables involved. Not every patient with a bad spine is a candidate for VEPTR treatment. You know that, so hopefully you can discuss what options ARE available. Like Shellie said, Shriners in SLC has patients from all over the world come for halo treatment and followup care/surgery. Dr. in SLC is Braydon's ortho. I trust him with my son's life. Period. He would give you good information and facts about what options are good for , if any. We are all parents here who have had various experiences with our kids. We don't have 's medical history in front of us, so we can only share what experiences we know about. You get to make those decisions for her. I wish you the best, and would be happy to share more of our VEPTR (and surgical fusion) experiences if you'd like. Take care and I look forward to reading more about . Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, 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/ ________________________________________________________________________________\ ____ Be a better Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers - Check it out. http://answers.yahoo.com/dir/?link=list & sid=396545469 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi! My son, Braydon, is a VEPTR patient. He had VEPTR implant surgery 6 years ago. He is doing very well. VEPTR is one of several options now available (grateful for advances in medical technology!). I agree with the others that needs to be evaluated by an expert VEPTR surgeon - either Drs. , Emans (in Boston), (in SLC) or Betz (in Philly). There are some other docs who are doing great things (not VEPTR) for young children with complex spine issues (ie, Dr. Skaggs in LA, Dr. Newton in San Diego, Dr. Song in Seattle, and several docs in the NYC area. However, not sure you want your to be an " experiment " with something very permanent. The great thing about VEPTR is that it can be NOT permanent (how's that for poor grammer?). They can be removed if necessary. VEPTR is NOT like growing rods. They are not placed along the spine like growing rods. The risk of spontaneous fusion is not there with VEPTRs, things like that. They can also support the entire torso, not just the spine (ie, chest, balance, etc.). My point is that if were my daughter, I would take her to a VEPTR surgeon for another evaluation. I would also know that going into the evaluation, her options are limited because of her body's condition and the many variables involved. Not every patient with a bad spine is a candidate for VEPTR treatment. You know that, so hopefully you can discuss what options ARE available. Like Shellie said, Shriners in SLC has patients from all over the world come for halo treatment and followup care/surgery. Dr. in SLC is Braydon's ortho. I trust him with my son's life. Period. He would give you good information and facts about what options are good for , if any. We are all parents here who have had various experiences with our kids. We don't have 's medical history in front of us, so we can only share what experiences we know about. You get to make those decisions for her. I wish you the best, and would be happy to share more of our VEPTR (and surgical fusion) experiences if you'd like. Take care and I look forward to reading more about . Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, 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/ ________________________________________________________________________________\ ____ Be a better Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers - Check it out. http://answers.yahoo.com/dir/?link=list & sid=396545469 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 That is so great that you know about Emans in Boston. We are trying to get an appointment as we speak with him. Also, Skaggs was reffered to us as well, but I thought LA was too far to go for an opinion plus the plane ticket would be outrageous. I thank you so much for opinions. I think I really would like to see Dr. if you know how to get a hold of him. > > Hi! > > My son, Braydon, is a VEPTR patient. He had VEPTR > implant surgery 6 years ago. He is doing very well. > VEPTR is one of several options now available > (grateful for advances in medical technology!). I > agree with the others that needs to be evaluated > by an expert VEPTR surgeon - either Drs. , > Emans (in Boston), (in SLC) or Betz (in Philly). > There are some other docs who are doing great things > (not VEPTR) for young children with complex spine > issues (ie, Dr. Skaggs in LA, Dr. Newton in San Diego, > Dr. Song in Seattle, and several docs in the NYC area. > However, not sure you want your to be an > " experiment " with something very permanent. The great > thing about VEPTR is that it can be NOT permanent > (how's that for poor grammer?). They can be removed > if necessary. VEPTR is NOT like growing rods. They > are not placed along the spine like growing rods. The > risk of spontaneous fusion is not there with VEPTRs, > things like that. They can also support the entire > torso, not just the spine (ie, chest, balance, etc.). > > My point is that if were my daughter, I would > take her to a VEPTR surgeon for another evaluation. I > would also know that going into the evaluation, her > options are limited because of her body's condition > and the many variables involved. Not every patient > with a bad spine is a candidate for VEPTR treatment. > You know that, so hopefully you can discuss what > options ARE available. > > Like Shellie said, Shriners in SLC has patients from > all over the world come for halo treatment and > followup care/surgery. Dr. in SLC is Braydon's > ortho. I trust him with my son's life. Period. He > would give you good information and facts about what > options are good for , if any. We are all > parents here who have had various experiences with our > kids. We don't have 's medical history in front > of us, so we can only share what experiences we know > about. You get to make those decisions for her. I > wish you the best, and would be happy to share more of > our VEPTR (and surgical fusion) experiences if you'd > like. Take care and I look forward to reading more > about . > > Carmell > > > > > Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, 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/ > > > > _____________________________________________________________________ _______________ > Be a better Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers - Check it out. > http://answers.yahoo.com/dir/?link=list & sid=396545469 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hello, I am pretty much a lurker here, but wanted to say that I'm an adult with Arthrogryposis and Scoliosis. As a kid there were no POP Jackets, all there was, was risser casts and spinal fusions. I had the spinal fusion when I was 12 years old. There is a parent on here who has a child with Arthrogryposis who is doing the POP Jackets and having luck with it. Hopefully she will see this post and she will chime in with her comments and experiences. But just wanted to say that sounds like me when I was her age. In my opinion I would also check out the option for the POP Jackets but I would check out the VEPTR to see if she could be a candidate. Hope things go well for you in the future. Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Thank you!!! Is there another name for the POP jacket so I can look further into them? can have a spinal fusion when she is 8 even though they would like to wait longer. My mother inlaw was just telling me about s Hopkins in Baltimore. Do you or anyone else know of this place and it's reputation? Also, spoke with my doctor here and he is emailing 's portfolio to S. in LA to see what he says about . Hopefully in the next couple of days we will find out our appointment date with Dr. Emmans. Again, thank you very much for everyones input, this has helped me more then you know. I wish I knew of this sight 4 years ago ) > > Hello, > > I am pretty much a lurker here, but wanted to say that I'm an adult with Arthrogryposis and Scoliosis. As a kid there were no POP Jackets, all there was, was risser casts and spinal fusions. I had the spinal fusion when I was 12 years old. There is a parent on here who has a child with Arthrogryposis who is doing the POP Jackets and having luck with it. Hopefully she will see this post and she will chime in with her comments and experiences. But just wanted to say that sounds like me when I was her age. > In my opinion I would also check out the option for the POP Jackets but I would check out the VEPTR to see if she could be a candidate. > > Hope things go well for you in the future. > > Betty > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi ... I really hope you'll get some solid advice you feel comfortable with and you can go out and seek several opinions for your daughter. We live in VA, where in NC do you live? My son, Evan's story is up on the ISOP website, luckily he was treated with the POP jackets and is now wearing a brace to maintain the correction achieved. Good luck on your journey and Evan havetolovelife wrote: Shellie, Just reading the other message from eariler. My name is and we live in North Carolina. 's syndrome doesn't affect her back, so they say. She has Arthrogryposis in her legs, scolosis in her back and Moebius in her face. They say that she does have her nerves, but just weak as to her muscles. is a normal kid, functions like every other kid, she just looks tired alot and she mostly crawls. I would really be interested in getting s case to Dr. in Texas for a 2nd opinion for the VEPTR. If you could let me know how I can contact his practice that would be great. So do you think that the only routes left is the casting, VEPTR, or another growing rod? Is there not anything else out there for severe scoliosis? I really don't like the idea of the Halo traction b/c if the growing rod ripped away from her sping, the whole bolt idea for her head, really scares me. Also, if we do the Halo-traction, has to stay in the hospital. She would have to be under constant supervision. --------------------------------- Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi ... I really hope you'll get some solid advice you feel comfortable with and you can go out and seek several opinions for your daughter. We live in VA, where in NC do you live? My son, Evan's story is up on the ISOP website, luckily he was treated with the POP jackets and is now wearing a brace to maintain the correction achieved. Good luck on your journey and Evan havetolovelife wrote: Shellie, Just reading the other message from eariler. My name is and we live in North Carolina. 's syndrome doesn't affect her back, so they say. She has Arthrogryposis in her legs, scolosis in her back and Moebius in her face. They say that she does have her nerves, but just weak as to her muscles. is a normal kid, functions like every other kid, she just looks tired alot and she mostly crawls. I would really be interested in getting s case to Dr. in Texas for a 2nd opinion for the VEPTR. If you could let me know how I can contact his practice that would be great. So do you think that the only routes left is the casting, VEPTR, or another growing rod? Is there not anything else out there for severe scoliosis? I really don't like the idea of the Halo traction b/c if the growing rod ripped away from her sping, the whole bolt idea for her head, really scares me. Also, if we do the Halo-traction, has to stay in the hospital. She would have to be under constant supervision. --------------------------------- Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
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