Re: titanium rib prosthetic/site in Texas

March 24, 2006

If you are in Dallas you should go to San Texas. The INVENTOR of the Veptr is there. His name is Dr. . All of it came from him and Dr. Melvin . My daughter Moriah has the implants that hook from rib to pelvis. They are wonderful there and you would save some money on travel. I would recommend them highly. We drive from the middle of Kansas to have treatment there. Shellie Granttovi39@... wrote: Dear Carmell, Thanks for the info. I do believe that the rod from rib to pelvis is what our current orthopedic surgeon wants to do. However I was wondering if the titanium rib might be an option. We go to ish Rite hospital for treatment in Dallas which

I think is part of the whole shriners family. I have contacted Dr Skaggs' office in los Angeles because I saw him perform the surgery on a patient on the television show Miracle workers... Dr Skaggs actually used to be my sons Doctor 6 years ago when we lived in Los Angeles. So I thought I'd start there. However, he was not in this week and will hopefully call me back next week. I really appriciate the info and I have registered on the web sight. Sincerely, Connie Re: titanium rib prosthetic Hi Connie! My son, Braydon, is a titanium rib (AKA VEPTR) patient. He had his implants done in August 2001 at age 6yrs old. He is doing very well because of this procedure! It sounds like you need to go have an evaluation by a VEPTR trained surgeon. There is a listing of hospitals approved to do this procedure on the website Shellie mentions http://www.veptr.com There is a newer version of the VEPTR procedure that does not invade the chestwall space nor the spine structure at all! They place two vertical, adjustable titanium rods on each side of the spine (far away from the spine, more under the shoulderblade area) and attach it to an upper rib (behind the collarbone) at the top, and to the pelvis at the bottom. This has worked VERY well for patients who are more immobile, like your son who doesn't walk much. They have had great success with this. Two hospitals have done this the most - Boston Childrens (Dr. Emans) and Primary Children's in Salt Lake City (Dr. ). I

would be happy to give you their contact information if you are interested in contacting them. Also, the Shriners hospital in SLC will be doing VEPTR implants in the very near future. They are well-known for their treatment of halo-traction prior to device implant surgery. They have had many successes with this. Shriners services are free. Have you considered going to Shriners in SLC? I'd be happy to share our experiences with you. And, I know both and will be sharing their halo-VEPTR experiences too. Take care and my best to you and your son. Carmell mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________

March 25, 2006

Connie- Have you asked Dr. ston about this? He seems pretty open to doing this surgery in our case. We live in San Angelo and travel back and forth between Dr. ston (TSRH) and San for treatment. Just something to think about. JenShellie Grant <shelliegrant@...> wrote: If you are in Dallas you should go to San Texas. The INVENTOR of the Veptr is there. His name is Dr. . All of it came from him and Dr. Melvin . My daughter Moriah has the implants that hook from rib to pelvis. They are wonderful there and you would save some money on travel. I would recommend them highly. We drive from the middle of Kansas to have treatment there. Shellie Granttovi39@... wrote: Dear Carmell, Thanks for the info. I do believe that the rod from rib to pelvis is what our current orthopedic surgeon wants to do. However I was wondering if the titanium rib might be an option. We go to ish Rite hospital for treatment in Dallas which I think is part of the whole shriners family. I have contacted Dr Skaggs' office in los Angeles because I saw him perform the surgery on a patient on the television show Miracle workers... Dr Skaggs actually used to be my sons Doctor 6 years ago when we lived in Los Angeles. So I thought I'd start there. However, he was not in this week and will hopefully call me back next week. I really appriciate the info and I have registered on the web sight. Sincerely, Connie Re: titanium rib prosthetic Hi Connie! My son, Braydon, is a titanium rib (AKA VEPTR) patient. He had his implants done in August 2001 at age 6yrs old. He is doing very well because of this procedure! It sounds like you need to go have an evaluation by a VEPTR trained surgeon. There is a listing of hospitals approved to do this procedure on the website Shellie mentions http://www.veptr.com There is a newer version of the VEPTR procedure that does not invade the chestwall space nor the spine structure at all! They place two vertical, adjustable titanium rods on each side of the spine (far away from the spine, more under the shoulderblade area) and attach it to an upper rib (behind the collarbone) at the top, and to the pelvis at the bottom. This has worked VERY well for patients who are more immobile, like your son who doesn't walk much. They have had great success with this. Two hospitals have done this the most - Boston Childrens (Dr. Emans) and Primary Children's in Salt Lake City (Dr. ). I would be happy to give you their contact information if you are interested in contacting them. Also, the Shriners hospital in SLC will be doing VEPTR implants in the very near future. They are well-known for their treatment of halo-traction prior to device implant surgery. They have had many successes with this. Shriners services are free. Have you considered going to Shriners in SLC? I'd be happy to share our experiences with you. And, I know both and

will be sharing their halo-VEPTR experiences too. Take care and my best to you and your son. Carmell mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________

March 25, 2006

Jen,

Yes, I asked Dr ston about titanium rib and he said that he has never done the procedure and in fact the hospital has never done it either. However he does want to do halo traction followed by the rod from rib to pelvis. Is this rod surgery concidered part of the titanium rib? I am under the immpression that the two are different? Am I wrong?

Will your child be having surgery at TSRH too? What a coincidence that we share the same Doctor.

Connie

Re: titanium rib prosthetic

Hi Connie! My son, Braydon, is a titanium rib (AKA VEPTR) patient. He had his implants done in August 2001 at age 6yrs old. He is doing very well because of this procedure! It sounds like you need to go have an evaluation by a VEPTR trained surgeon. There is a listing of hospitals approved to do this procedure on the website Shellie mentions http://www.veptr.com There is a newer version of the VEPTR procedure that does not invade the chestwall space nor the spine structure at all! They place two vertical, adjustable titanium rods on each side of the spine (far away from the spine, more under the shoulderblade area) and attach it to an upper rib (behind the collarbone) at the top, and to the pelvis at the bottom. This has worked VERY well for patients who are more immobile, like your son who doesn't walk much. They have had great success with this. Two hospitals have done this the most - Boston Childrens (Dr. Emans) and Primary Children's in Salt Lake City (Dr. ). I would be happy to give you their contact information if you are interested in contacting them. Also, the Shriners hospital in SLC will be doing VEPTR implants in the very near future. They are well-known for their treatment of halo-traction prior to device implant surgery. They have had many successes with this. Shriners services are free. Have you considered going to Shriners in SLC? I'd be happy to share our experiences with you. And, I know both and

will be sharing their halo-VEPTR experiences too. Take care and my best to you and your son. Carmell mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________

March 26, 2006

Connie- Madison was actaully treated in SLC by Dr. D'Astous for her scoli. We are participating in TSRH's tests relating to the genetic testing to find the gene that causes idiopathic scoli and the coorelation of pulmonary function/disfunction as related to early onset scoli. Dr. J does do some follow-up, but basically we go to San for her treatment now. He mentioned being interested in learning more about the rib project when I met him SLC at the first ETTP. Dr. Ritchie went to SLC to do a fellowship with Dr. D to be able to treat Madison actually. The two of them are working very closely together on her continued care. I know that he is looking into getting a "Mehta" style table to do casting. I think he may be waiting to see if another DOD kid shows up before making the investment though. I think he treats civillians too, but I'm not sure. I do know that he is on the

board of pedi orthos for San though, so maybe so. Also, Dr. (who was previously mentioned as the creator of the rib) is at Christus Santa . He's at the downtown San location; however, I believe his office is in the medical center, near the other location. I'm not sure if this helps you out at all, but you are at least in a good state to limit some of your travel. We have discovered a FANTASTIC orthotist in San too. He follows EXACTLY what Dr. D'Astous, Dr. Ritchie, and Miss Mehta ask him to do for Madsion's braces. Please feel free to contact me privately if you would like to chat. Best wishes to you and your family! Jentovi39@... wrote: Jen, Yes, I asked Dr

ston about titanium rib and he said that he has never done the procedure and in fact the hospital has never done it either. However he does want to do halo traction followed by the rod from rib to pelvis. Is this rod surgery concidered part of the titanium rib? I am under the immpression that the two are different? Am I wrong? Will your child be having surgery at TSRH too? What a coincidence that we share the same Doctor. Connie Re: titanium rib prosthetic Hi Connie! My son, Braydon, is a titanium rib (AKA VEPTR) patient. He had his implants done in August 2001 at age 6yrs old. He is doing very well because of this procedure! It sounds like you need to go have an evaluation by a VEPTR trained surgeon. There is a listing of hospitals approved to do this procedure on the website Shellie mentions http://www.veptr.com There is a newer version of the VEPTR procedure that does not invade the chestwall space nor the spine structure at all! They place two vertical, adjustable titanium rods on each side of the spine (far away from the spine, more under the shoulderblade area) and attach it to an upper rib (behind the collarbone) at the top, and to the pelvis at the bottom. This has worked VERY well for patients who are more immobile, like your son who doesn't walk much. They have had great success

with this. Two hospitals have done this the most - Boston Childrens (Dr. Emans) and Primary Children's in Salt Lake City (Dr. ). I would be happy to give you their contact information if you are interested in contacting them. Also, the Shriners hospital in SLC will be doing VEPTR implants in the very near future. They are well-known for their treatment of halo-traction prior to device implant surgery. They have had many successes with this. Shriners services are free. Have you considered going to Shriners in SLC? I'd be happy to share our experiences with you. And, I know both and will be sharing their halo-VEPTR experiences too. Take care and my best to you and your son. Carmell mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing

coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________

March 29, 2006

Hi Connie,

I saved your post to respond to... I hope you don't

mind.

you said:

<<However he does want to do halo traction followed by

the rod from rib to pelvis. Is this rod surgery

concidered part of the titanium rib? I am under the

immpression that the two are different? Am I wrong?>>

You are correct. The procedure your doc is suggesting

is not the VEPTR procedure. I'm not sure what he's

proposing, but it sounds similar.

IMHO, you would want to go to a hospital that has done

more than one or two (or NONE) of these procedures.

You want to make sure he's getting the best care

possible. If he needs halo prior to adjustable rod

placement, Shriners in SLC is very good, and very

well-known. It would NEVER hurt to even get a second

(or multiple) opinion from another hospital/ped. ortho

about his situation. And, if the surgeons concur, you

will feel confident in the surgeon you choose to help

him.

Our kids are unique and rare. There are not many out

there who have multiple issues and severe spine

anomalies that require well-knowledged surgeons. The

procedures are not necessarily complicated (like brain

surgery) but, if not done correctly, the consequences

are life-altering. Not something to gamble with (your

child's life) IMHO.

I'm not sure you know about Braydon's situation. I'd

be happy to share his story with you. He is now 10yrs

old and doing very well. He's had anterior/posterior

fusion surgery, tethered cord release surgery and

VEPTR implant surgery with 9 expansions to date.

Take care!

Carmell

mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL,

GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic

insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96),

missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion,

clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single

umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc.

http://carmellb-ivil.tripod.com/myfamily/

__________________________________________________

March 29, 2006

Isn't rib to pelvis the Hybrid? That is how Moriah's two are anchored. I'm confused. ShellieCarmell Burns <cjbmom23@...> wrote: Hi Connie,I saved your post to respond to... I hope you don'tmind.you said: <<However he does want to do halo traction followed bythe rod from rib to pelvis. Is this rod surgeryconcidered part of the titanium rib? I am under theimmpression that the two are different? Am I wrong?>>You are correct. The procedure your doc is suggestingis not the VEPTR procedure. I'm not sure what he'sproposing, but it sounds similar. IMHO, you would want to go to a hospital that has donemore than one or two (or NONE) of these procedures. You want to make sure he's getting the best

carepossible. If he needs halo prior to adjustable rodplacement, Shriners in SLC is very good, and verywell-known. It would NEVER hurt to even get a second(or multiple) opinion from another hospital/ped. orthoabout his situation. And, if the surgeons concur, youwill feel confident in the surgeon you choose to helphim. Our kids are unique and rare. There are not many outthere who have multiple issues and severe spineanomalies that require well-knowledged surgeons. Theprocedures are not necessarily complicated (like brainsurgery) but, if not done correctly, the consequencesare life-altering. Not something to gamble with (yourchild's life) IMHO.I'm not sure you know about Braydon's situation. I'dbe happy to share his story with you. He is now 10yrsold and doing very well. He's had anterior/posteriorfusion surgery, tethered cord release

surgery andVEPTR implant surgery with 9 expansions to date.Take care!Carmellmom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/__________________________________________________

March 29, 2006

Hi Shellie,

<<Isn't rib to pelvis the Hybrid? That is how

Moriah's two are anchored.>>

Yes, you are correct. However, the actual device the

other doc is using is not the VEPTR device. I'm not a

professional, but I'm guessing the doc takes an

already existing device (likely the growing rod

device) and modifies it to be a rib-to-pelvis

attachment. The part that makes me nervous is that it

is not an approved device for rib-to-pelvis

attachment. (Unless I'm way off base here - if

someone knows better, please let me know).

I'm going to attend a spine conference at the end of

April. I plan on investigating the vendors who will

be at the conference and find out more about devices

that are used for this purpose. I'd love to learn

more.