titanium rib prosthetic

[Guest guest]

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There is a newer version of the VEPTR procedure that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/

__________________________________________________

[Guest guest]

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/

__________________________________________________

[Guest guest]

I *think* Dr. who invented VEPTR is from Texas...you might want to check him out too as that would be much more convenient for you and you can't beat going to the guy who invented it!

Noelle (12-2-01)Ian (8-15-04)

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/

__________________________________________________

[Guest guest]

Dear Jacki

Thanks for the web sight. I have already signed up and am eager to hear of everyones experiences.

My son was actually diagnosed with Marfan syndrome at birth. The diagnosis later changed to Beals Syndrome when he was one and now we're not sure what is going on.

Thanks again!

Connie

Re: titanium rib prosthetic

Hi Connie

My daughter is 6 (nearly 7) and is going to get the VEPTR in May, and she has recently been diagnosed with Marfan Syndrome which is a connective tissue disorder too!

I don't have much time to reply now - Gotta get the kids to school. I recommend you sign up on the forum of Veptr.com too.

Jacki

>

> Hello, My name is Connie and my son, has a severe curve of 90 degrees. He has some sort of connective tissue disorder causing his scoliosis. Possibly Beals syndrome, possibly Loeyes Dietz Syndrome, possibly none of the above. His diagnosis is a mystery to every specialist we see. > At any rate we are now in the process of deciding what is best to correct or maintain his curve. His orthopedic surgeon wants to start traction as soon as possible followed by rod surgery. My question is if anyone here has gone through titanium rib surgery? I know it is a relatively new surgery and it is really meant for people with severe rib malformations like fused ribs. However I understand that a byproduct of titanium rib surgery is curve correction.

> I should mention that my son is seven years old and has worn a brace since he was 5 months old. He also has severe hypotonia (low muscle tone) and does not walk.

> I'd love to hear what everyone knows on this subject. Our orthopedic surg has not yet performed this surgery and has recommended that it not a good idea for because it involves rebuilding his chest wall which may cause further breathing issues.

> > Thanks, > Connie

> > > > Article health wellness Center for health and wellness Health and wellness > Health and wellness program Health wellness product Health and wellness job > > > > ! GROUPS LINKS > > Visit your group "infantile scoliosis treatment" on the web.

> >

[Guest guest]

Hi Connie

That is very interesting, as I get to " meet " so few people with

Marfans!! My daughter was diagnosed with a Connective Tissue

Disorder at around aged 2 yrs, which as her symptoms progressed

became " Possible Marfans " . As of this year, she now meets the

criteria (makes it sound like she won the lottery LOL)and they're

calling it " Emerging Marfan Syndrome " .

Please tell me more about your son, his connective tissue disorder

and possible VEPTR implants. Or if you'd prefer you can email me

directly at jabostock@...

Jacki

> >

> > Hello, My name is Connie and my son, has a severe curve

> of 90 degrees. He has some sort of connective tissue disorder

> causing his scoliosis. Possibly Beals syndrome, possibly Loeyes

> Dietz Syndrome, possibly none of the above. His diagnosis is a

> mystery to every specialist we see.

> > At any rate we are now in the process of deciding what is best

to

> correct or maintain his curve. His orthopedic surgeon wants to

start

> traction as soon as possible followed by rod surgery. My question

is

> if anyone here has gone through titanium rib surgery? I know it is

a

> relatively new surgery and it is really meant for people with

severe

> rib malformations like fused ribs. However I understand that a

> byproduct of titanium rib surgery is curve correction.

> > I should mention that my son is seven years old and has worn a

> brace since he was 5 months old. He also has severe hypotonia (low

> muscle tone) and does not walk.

> > I'd love to hear what everyone knows on this subject. Our

> orthopedic surg has not yet performed this surgery and has

> recommended that it not a good idea for because it

involves

> rebuilding his chest wall which may cause further breathing issues.

> >

> > Thanks,

> > Connie

> >

> >

> >

> > Article health wellness Center for health and wellness Health

and

> wellness

> > Health and wellness program Health wellness product Health and

> wellness job

> >

> >

> >

> > ! GROUPS LINKS

> >

> > Visit your group " infantile scoliosis treatment " on the web.

> >

> >

[Guest guest]

Hi Jacki,

Well, was born full term with a lot of the characteristics that meet the Marfan Syndrome disorder. He had pectus excavacum, long thin fingers, an enlarged aorta, crumpled toes, contractures of his knees and elbows. adducted thumbs, very loose joints (except for his elbows and knees) and a few other problems that don't really relate to Marfans, like low muscle tone low SAT's poor feeding, and his radius and ulna bones were fused so he couldn't supanate his arms.

At five months we found out he was severely farsighted which differs from Marfans- people with marfans are usually nearsighted. His scoliosis also developed at five months.

At one year they said that he just no longer fit into the Marfans diagnosis because, he is very short for his age and also his scoliosis progressed so rapidly that it looked more like Beals Syndrome.

Also at about one and a half, we found out that he had a very unstable C1 and a bit of pressure on his spinal cord. We monitored it very closely for five years and finally had to have surgery last September for a cervical spinal fusion and laminectomy.

As he grows, he no longer fits into the Beals realm either. We are currently in the process of having testing done for Loweys Dietz Syndrome which is also a connective tissue disorder that was just discovered a year ago. I should mention that he has also been tested for Marfans and Beals. They found no mutation in either gene.

Other major features that has are very very very loose joints....extremely flexible. And severe hypotonia. The low muscle tone through out his body is the real mystery. Every time they think they have an answer, the poor muscle tone just doesn't fit. He is very small for his age. 29 pounds and 37 inches long. He cannot walk, however he is a really good roller.

I'd love to hear about your daughter too. How is her heart? Any problems there?

Connie

Re: titanium rib prosthetic

Hi Connie

That is very interesting, as I get to "meet" so few people with Marfans!! My daughter was diagnosed with a Connective Tissue Disorder at around aged 2 yrs, which as her symptoms progressed became "Possible Marfans". As of this year, she now meets the criteria (makes it sound like she won the lottery LOL)and they're calling it "Emerging Marfan Syndrome".

Please tell me more about your son, his connective tissue disorder and possible VEPTR implants. Or if you'd prefer you can email me directly at jabostock@...

Jacki

> >

> > Hello, My name is Connie and my son, has a severe curve > of 90 degrees. He has some sort of connective tissue disorder > causing his scoliosis. Possibly Beals syndrome, possibly Loeyes > Dietz Syndrome, possibly none of the above. His diagnosis is a > mystery to every specialist we see. > > At any rate we are now in the process of deciding what is best to > correct or maintain his curve. His orthopedic surgeon wants to start > traction as soon as possible followed by rod surgery. My question is > if anyone here has gone through titanium rib surgery? I know it is a > relatively new surgery and it is really meant for people with severe > rib malformations like fused ribs. However I understand that a > byproduct of titanium rib surgery is curve correction.

> > I should mention that my son is seven years old and has worn a > brace since he was 5 months old. He also has severe hypotonia (low > muscle tone) and does not walk.

> > I'd love to hear what everyone knows on this subject. Our > orthopedic surg has not yet performed this surgery and has > recommended that it not a good idea for because it involves > rebuilding his chest wall which may cause further breathing issues.

> > > > Thanks, > > Connie

> > > > > > > > Article health wellness Center for health and wellness Health and > wellness > > Health and wellness program Health wellness product Health and > wellness job > > > > > > > > ! GROUPS LINKS > > > > Visit your group "infantile scoliosis treatment" on the web.

> > > >