Re: TLC show - Amazing Medical Stories - Veptr

[Guest guest]

Funny you mention that. My sister-in-law saw a program called "The Doctors" on CBS that had a segment on a young girl with progressive scoliosis and showed her VEPTR surgery. I found a brief recap of that Sept. 18th show on their website www.thedoctorstv.com. Seems like this topic is finally getting some press. Maybe this will help spread the word that it is not a "cosmetic issue" as one doc referred to it and not the same as scoliosis in teens. Now, if they would just mention ET and Mehta's method as an alternative!

In other news.... just found out an hour ago that my 4 yr old son also has scoliosis. He was my "healthy one". Having been through 8 casts in 14 months with Sophia and just moving to a brace last month- we don't even know if the brace is holding her yet or if we will have to face additional treatment for her. Now Sam! I am scared and trying not to freak out. It is a very small curve- 14 degrees but he has a significant hump which indicates rotation. No one can tell us RVAD. We can't get into the local ortho until mid October, so I e-mailed his x-rays to Sophia's out of state casting doc asking for his opinion. Thank you for letting me vent or rant. Only parents that have been there or are there now, really know what it is like to have a dark cloud of uncertainty hanging over your child's future. This journey really is an emotional roller coaster. Every time I let myself start to think we might be able to get back to a somewhat "normal" life and routine, something else hits. But I have to remind myself how blessed we are to have found ET and to have saved Sophia from a much more dire prognosis. We are at the very least well educated to be able to deal with Sam's situation now.

Thanks,

Tina

TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

Darrell,That show is a re-run already. It was first on a couple of years ago (2006, I think). It IS a great show, and did a good job showing how well Devin is doing after VEPTR surgery. I think Discovery Health is pretty possessive of their shows and doesn't have the actual video listed for public viewing. I'm not very computer literate, but I could only find the TV listings too. I do have bookmarked 3 different webcast versions of VEPTR surgeries. If anyone is interested, I'd be happy to send the links. They are operations done at Boston Children's hospital, Rainbow Babies and Children (Cleveland) and New York-Presbyterian hospital.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 18, GERD, and Braydon 13, 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 grouphttp://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

Hi Tina,<<In other news.... just found out an hour ago that my 4 yr old son also has scoliosis. He was my "healthy one".>>I'm sorry to hear Sam has been diagnosed with scoliosis. I know its so hard! Two of my three children have scoliosis (one is teenager idiopathic and the other, Braydon, is congenital, so not at all related). After my daughter (9+ years older than Braydon) watched Braydon go through fusion surgery as an infant, and VEPTR surgeries, she was not at all committed to wearing a brace for her scoliosis. Fortunately, she didn't need surgery (yet, she's 22 now). As you already know (too well, I'm afraid) scoliosis in very young children is not normal. Please make sure you get the appropriate MRIs and other testing to make sure it's "just" idiopathic scoliosis and not another medical condition underlying. Keep us posted on how things go.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 18, GERD, and

Braydon 13, 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 grouphttp://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

Thanks Carmell!

Will keep you posted.

Tina

Re: TLC show - Amazing Medical Stories - Veptr

Hi Tina,<<In other news.... just found out an hour ago that my 4 yr old son also has scoliosis. He was my "healthy one".>>I'm sorry to hear Sam has been diagnosed with scoliosis. I know its so hard! Two of my three children have scoliosis (one is teenager idiopathic and the other, Braydon, is congenital, so not at all related). After my daughter (9+ years older than Braydon) watched Braydon go through fusion surgery as an infant, and VEPTR surgeries, she was not at all committed to wearing a brace for her scoliosis. Fortunately, she didn't need surgery (yet, she's 22 now). As you already know (too well, I'm afraid) scoliosis in very young children is not normal. Please make sure you get the appropriate MRIs and other testing to make sure it's "just" idiopathic scoliosis and not another medical condition underlying. Keep us posted on how things go.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 18, GERD, and Braydon 13, 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 grouphttp://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

Tina,

I am SO SORRY to hear about Sam. I can imagine how frustrated and upset you must feel. Thankfully it's a small curve and like you said at least you know what to do - not that that is any consultation.

Take care and try not to get discouraged. Vent and rant all you want, this is what we're here for.

Janet

mom to Violet, 4 months old 30 degree curve & Gibbous.

Subject: Re: TLC show - Amazing Medical Stories - VeptrTo: infantile_scoliosis Date: Wednesday, September 24, 2008, 2:04 PM

Funny you mention that. My sister-in-law saw a program called "The Doctors" on CBS that had a segment on a young girl with progressive scoliosis and showed her VEPTR surgery. I found a brief recap of that Sept. 18th show on their website www.thedoctorstv. com. Seems like this topic is finally getting some press. Maybe this will help spread the word that it is not a "cosmetic issue" as one doc referred to it and not the same as scoliosis in teens. Now, if they would just mention ET and Mehta's method as an alternative!

In other news.... just found out an hour ago that my 4 yr old son also has scoliosis. He was my "healthy one". Having been through 8 casts in 14 months with Sophia and just moving to a brace last month- we don't even know if the brace is holding her yet or if we will have to face additional treatment for her. Now Sam! I am scared and trying not to freak out. It is a very small curve- 14 degrees but he has a significant hump which indicates rotation. No one can tell us RVAD. We can't get into the local ortho until mid October, so I e-mailed his x-rays to Sophia's out of state casting doc asking for his opinion. Thank you for letting me vent or rant. Only parents that have been there or are there now, really know what it is like to have a dark cloud of uncertainty hanging over your child's future. This journey really is an emotional roller coaster. Every time I let myself start to think we might be able to get back

to a somewhat "normal" life and routine, something else hits. But I have to remind myself how blessed we are to have found ET and to have saved Sophia from a much more dire prognosis. We are at the very least well educated to be able to deal with Sam's situation now.

Thanks,

Tina

[infantile_scoliosi s] TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

Hi Carmell

Thanks can you send me those links. dmcmow@...

Darrell

Re: TLC show - Amazing Medical Stories - Veptr

Darrell,That show is a re-run already. It was first on a couple of years ago (2006, I think). It IS a great show, and did a good job showing how well Devin is doing after VEPTR surgery. I think Discovery Health is pretty possessive of their shows and doesn't have the actual video listed for public viewing. I'm not very computer literate, but I could only find the TV listings too. I do have bookmarked 3 different webcast versions of VEPTR surgeries. If anyone is interested, I'd be happy to send the links. They are operations done at Boston Children's hospital, Rainbow Babies and Children (Cleveland) and New York-Presbyterian hospital.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 18, GERD, and Braydon 13, 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 grouphttp://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

Hi Tina

Sorry to hear about Sam. I hope everything goes well for him.

Darrell

TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

I watched the Doctors last week about the Veptr. It was on ABC where I live. I have talked with and have contacted my local ABC station about it. I don't know if they will end up doing a story locally or not but since I have not heard from them yet, I am going to contact the show and see if we can do something about getting on. told me that Dr , the one who developed the Veptr and was on the show has met her and Ms Mehta. He was instrumental in getting ET in Dallas. We will let you know as soon as we can what kind of response we get.

Shara -- Grammy to Devyn age almost 3 -- scoli and Chiari

TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

I just happened to think -- if the show were to get a bunch of emails about ET it seems to me they would be interested in getting someone on the program about this. It certainly couldn't hurt especially when they get them from all over the world!!!! Ya know what they say about squeaky wheels!!! Lets make lots of noise!!!! Be sure to mention ISOP and give them the link so they can see this information first hand.

Shara, Grammy to Devyn, almost 3, scoli and Chiari

TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

I guess I should mention the show is The Doctors. I just sent in an email to them. Hope it works!!!!

Shara

TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

Wow that would be so exciting! Good job

Subject: Re: TLC show - Amazing Medical Stories - VeptrTo: infantile_scoliosis Date: Wednesday, September 24, 2008, 7:11 PM

I watched the Doctors last week about the Veptr. It was on ABC where I live. I have talked with and have contacted my local ABC station about it. I don't know if they will end up doing a story locally or not but since I have not heard from them yet, I am going to contact the show and see if we can do something about getting on. told me that Dr , the one who developed the Veptr and was on the show has met her and Ms Mehta. He was instrumental in getting ET in Dallas. We will let you know as soon as we can what kind of response we get.

Shara -- Grammy to Devyn age almost 3 -- scoli and Chiari

[infantile_scoliosi s] TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

Oh Tina,

Hang in there. It is still so small. How did you find the curve?

This is such a roller coaster and I am sorry you have to deal with it again. Prays and hugs to you!

Jill

Subject: Re: TLC show - Amazing Medical Stories - VeptrTo: infantile_scoliosis Date: Wednesday, September 24, 2008, 5:04 PM

Funny you mention that. My sister-in-law saw a program called "The Doctors" on CBS that had a segment on a young girl with progressive scoliosis and showed her VEPTR surgery. I found a brief recap of that Sept. 18th show on their website www.thedoctorstv. com. Seems like this topic is finally getting some press. Maybe this will help spread the word that it is not a "cosmetic issue" as one doc referred to it and not the same as scoliosis in teens. Now, if they would just mention ET and Mehta's method as an alternative!

In other news.... just found out an hour ago that my 4 yr old son also has scoliosis. He was my "healthy one". Having been through 8 casts in 14 months with Sophia and just moving to a brace last month- we don't even know if the brace is holding her yet or if we will have to face additional treatment for her. Now Sam! I am scared and trying not to freak out. It is a very small curve- 14 degrees but he has a significant hump which indicates rotation. No one can tell us RVAD. We can't get into the local ortho until mid October, so I e-mailed his x-rays to Sophia's out of state casting doc asking for his opinion. Thank you for letting me vent or rant. Only parents that have been there or are there now, really know what it is like to have a dark cloud of uncertainty hanging over your child's future. This journey really is an emotional roller coaster. Every time I let myself start to think we might be able to get back

to a somewhat "normal" life and routine, something else hits. But I have to remind myself how blessed we are to have found ET and to have saved Sophia from a much more dire prognosis. We are at the very least well educated to be able to deal with Sam's situation now.

Thanks,

Tina

[infantile_scoliosi s] TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

I'd love to see it if anybody finds it...... Steph

Subject: TLC show - Amazing Medical Stories - VeptrTo: infantile_scoliosis Date: Wednesday, September 24, 2008, 8:26 PM

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

Tina,

I'm so sorry about your son's scoli..... It always is something and so hard to catch a breath at times.... I will be thinking of all of you. Thanks for the onfo. and please keep me posted about your son. Steph

Subject: Re: TLC show - Amazing Medical Stories - VeptrTo: infantile_scoliosis Date: Wednesday, September 24, 2008, 9:04 PM

Funny you mention that. My sister-in-law saw a program called "The Doctors" on CBS that had a segment on a young girl with progressive scoliosis and showed her VEPTR surgery. I found a brief recap of that Sept. 18th show on their website www.thedoctorstv. com. Seems like this topic is finally getting some press. Maybe this will help spread the word that it is not a "cosmetic issue" as one doc referred to it and not the same as scoliosis in teens. Now, if they would just mention ET and Mehta's method as an alternative!

In other news.... just found out an hour ago that my 4 yr old son also has scoliosis. He was my "healthy one". Having been through 8 casts in 14 months with Sophia and just moving to a brace last month- we don't even know if the brace is holding her yet or if we will have to face additional treatment for her. Now Sam! I am scared and trying not to freak out. It is a very small curve- 14 degrees but he has a significant hump which indicates rotation. No one can tell us RVAD. We can't get into the local ortho until mid October, so I e-mailed his x-rays to Sophia's out of state casting doc asking for his opinion. Thank you for letting me vent or rant. Only parents that have been there or are there now, really know what it is like to have a dark cloud of uncertainty hanging over your child's future. This journey really is an emotional roller coaster. Every time I let myself start to think we might be able to get back

to a somewhat "normal" life and routine, something else hits. But I have to remind myself how blessed we are to have found ET and to have saved Sophia from a much more dire prognosis. We are at the very least well educated to be able to deal with Sam's situation now.

Thanks,

Tina

[infantile_scoliosi s] TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

Let me know where to send the "noise" and I'll be happy to do that!!!!! Steph

Subject: Re: TLC show - Amazing Medical Stories - VeptrTo: infantile_scoliosis Date: Wednesday, September 24, 2008, 11:23 PM

I just happened to think -- if the show were to get a bunch of emails about ET it seems to me they would be interested in getting someone on the program about this. It certainly couldn't hurt especially when they get them from all over the world!!!! Ya know what they say about squeaky wheels!!! Lets make lots of noise!!!! Be sure to mention ISOP and give them the link so they can see this information first hand.

Shara, Grammy to Devyn, almost 3, scoli and Chiari

[infantile_scoliosi s] TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

You go to this site: www.thedoctorstv.com and click on "ask the doctors". Then you will get a screen to put your name, etc and a place to write you question. I basically just mentioned about my grandson, about ISOP and why it was founded and the fact that this promises to be a GOOD thing for many kids and will help them avoid surgery and rods. Just whatever you want to say --

Shara

[infantile_scoliosi s] TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

Tina,Just wanted to say we're so sorry to hear about your son. How old was your daughter when you found out she had scoliosis? I hope you can get in soon to have your son seen by the doc. We'll be thinking of you.

Jay

Subject: Re: TLC show - Amazing Medical Stories - VeptrTo: infantile_scoliosis Date: Wednesday, September 24, 2008, 4:04 PM

Funny you mention that. My sister-in-law saw a program called "The Doctors" on CBS that had a segment on a young girl with progressive scoliosis and showed her VEPTR surgery. I found a brief recap of that Sept. 18th show on their website www.thedoctorstv. com. Seems like this topic is finally getting some press. Maybe this will help spread the word that it is not a "cosmetic issue" as one doc referred to it and not the same as scoliosis in teens. Now, if they would just mention ET and Mehta's method as an alternative!

In other news.... just found out an hour ago that my 4 yr old son also has scoliosis. He was my "healthy one". Having been through 8 casts in 14 months with Sophia and just moving to a brace last month- we don't even know if the brace is holding her yet or if we will have to face additional treatment for her. Now Sam! I am scared and trying not to freak out. It is a very small curve- 14 degrees but he has a significant hump which indicates rotation. No one can tell us RVAD. We can't get into the local ortho until mid October, so I e-mailed his x-rays to Sophia's out of state casting doc asking for his opinion. Thank you for letting me vent or rant. Only parents that have been there or are there now, really know what it is like to have a dark cloud of uncertainty hanging over your child's future. This journey really is an emotional roller coaster. Every time I let myself start to think we might be able to get back

to a somewhat "normal" life and routine, something else hits. But I have to remind myself how blessed we are to have found ET and to have saved Sophia from a much more dire prognosis. We are at the very least well educated to be able to deal with Sam's situation now.

Thanks,

Tina

[infantile_scoliosi s] TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

Hi Carmell

Watched two of them the one from Rainbow Babies and New York. Couldnt find the one from Boston but read the article thanks for sending them to me very informative.

Darrell

Re: TLC show - Amazing Medical Stories - Veptr

Darrell,That show is a re-run already. It was first on a couple of years ago (2006, I think). It IS a great show, and did a good job showing how well Devin is doing after VEPTR surgery. I think Discovery Health is pretty possessive of their shows and doesn't have the actual video listed for public viewing. I'm not very computer literate, but I could only find the TV listings too. I do have bookmarked 3 different webcast versions of VEPTR surgeries. If anyone is interested, I'd be happy to send the links. They are operations done at Boston Children's hospital, Rainbow Babies and Children (Cleveland) and New York-Presbyterian hospital.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 18, GERD, and Braydon 13, 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 grouphttp://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

Hi Shara

I also sent them a note maybe this might help a bit at least raise awareness!!!

Darrell

TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

I really do not know what to say for I can your frustration and dissappointment too. Praying for you and your children.

Ethelyn

Subject: Re: TLC show - Amazing Medical Stories - VeptrTo: infantile_scoliosis Date: Thursday, September 25, 2008, 5:04 AM

Funny you mention that. My sister-in-law saw a program called "The Doctors" on CBS that had a segment on a young girl with progressive scoliosis and showed her VEPTR surgery. I found a brief recap of that Sept. 18th show on their website www.thedoctorstv. com. Seems like this topic is finally getting some press. Maybe this will help spread the word that it is not a "cosmetic issue" as one doc referred to it and not the same as scoliosis in teens. Now, if they would just mention ET and Mehta's method as an alternative!

In other news.... just found out an hour ago that my 4 yr old son also has scoliosis. He was my "healthy one". Having been through 8 casts in 14 months with Sophia and just moving to a brace last month- we don't even know if the brace is holding her yet or if we will have to face additional treatment for her. Now Sam! I am scared and trying not to freak out. It is a very small curve- 14 degrees but he has a significant hump which indicates rotation. No one can tell us RVAD. We can't get into the local ortho until mid October, so I e-mailed his x-rays to Sophia's out of state casting doc asking for his opinion. Thank you for letting me vent or rant. Only parents that have been there or are there now, really know what it is like to have a dark cloud of uncertainty hanging over your child's future. This journey really is an emotional roller coaster. Every time I let myself start to think we might be able to get back

to a somewhat "normal" life and routine, something else hits. But I have to remind myself how blessed we are to have found ET and to have saved Sophia from a much more dire prognosis. We are at the very least well educated to be able to deal with Sam's situation now.

Thanks,

Tina

[infantile_scoliosi s] TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

I contacted them this morning too!This is a show put on by Dr. Phil's son, Jay McGraw and Dr. Phil's show team.I saw him last night on Jay Leno talking about it.I didn't know anything about this show........I'll have to watch for it.Hopefully more of you will send them a short email and they will start to consider it.It sure will not hurt.TashaMommy of twin boys- and 3 years oldFort Worth, Texas is 7.5 degrees and brace free during the day!!!Casting 14 months and bracing 10 months

From: Shara <lewismedtbresnan (DOT) net>Subject: Re: [infantile_scoliosi s] TLC show - Amazing Medical Stories - VeptrTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, September 24, 2008, 11:23 PM

I just happened to think -- if the show were to get a bunch of emails about ET it seems to me they would be interested in getting someone on the program about this. It certainly couldn't hurt especially when they get them from all over the world!!!! Ya know what they say about squeaky wheels!!! Lets make lots of noise!!!! Be sure to mention ISOP and give them the link so they can see this information first hand.

Shara, Grammy to Devyn, almost 3, scoli and Chiari

[infantile_scoliosi s] TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

I contacted them as well, I went under Contact the Show and filled out the form and HOPE someone will hear something back!!

From: Shara <lewismedtbresnan (DOT) net>Subject: Re: [infantile_scoliosi s] TLC show - Amazing Medical Stories - VeptrTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, September 24, 2008, 11:23 PM

I just happened to think -- if the show were to get a bunch of emails about ET it seems to me they would be interested in getting someone on the program about this. It certainly couldn't hurt especially when they get them from all over the world!!!! Ya know what they say about squeaky wheels!!! Lets make lots of noise!!!! Be sure to mention ISOP and give them the link so they can see this information first hand.

Shara, Grammy to Devyn, almost 3, scoli and Chiari

[infantile_scoliosi s] TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

I also sent them an email Maybe if enough of us do!

[infantile_scoliosi s] TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

Hi,

I sent a message as well.

Jay

Subject: Re: TLC show - Amazing Medical Stories - VeptrTo: infantile_scoliosis Date: Wednesday, September 24, 2008, 10:09 PM

Hi Shara

I also sent them a note maybe this might help a bit at least raise awareness!!!

Darrell

[infantile_scoliosi s] TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a little boy from florida with scoliosis. His curve was over 100 degrees and how the Veptr saved this boys life. They showed the veptr and the surgery and the doc explained how it works.I tried to find the story online but no luck. I know it shows it in their listings but I cant find the video. If anybody is a little more computer savy they might be able to find this. If not I will watch for a replay.Darrell

[Guest guest]

I agree. Lets bombard

them with ET success stories!

HRH

Re:

TLC show - Amazing Medical Stories - Veptr

I just happened to think -- if the

show were to get a bunch of emails about ET it seems to me they would be

interested in getting someone on the program about this. It certainly couldn't

hurt especially when they get them from all over the world!!!! Ya know what

they say about squeaky wheels!!! Lets make lots of noise!!!! Be sure to

mention ISOP and give them the link so they can see this information first

hand.

Shara, Grammy to Devyn, almost 3,

scoli and Chiari

TLC show - Amazing Medical Stories - Veptr

I watched a show last night on TLC and the first story was about a

little boy from florida with scoliosis. His curve was over 100 degrees

and how the Veptr saved this boys life. They showed the veptr and the

surgery and the doc explained how it works.

I tried to find the story online but no luck. I know it shows it in

their listings but I cant find the video. If anybody is a little more

computer savy they might be able to find this. If not I will watch for

a replay.

Darrell