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Carmell,

You are ALWAYS so incredibly helpful and your way of explaining things is

awesome!!! Thank you so much.

Just to touch on a couple of things you mentioned....You said that finding a doc

who has treated someone like would be key. Well there lies the problem.

We have of yet to find another child like him (physically) none of his docs have

been able to find any and this would include an array of specialists from three

different states. He has baffled the best of them!!!

He does well with anesthesia there is no problem there.

I have worked so hard at getting an appointment with San , do you really

think it's not the best choice? Also I was told today they might not be able to

see him with the halo traction.. I'm not sure why. San was our first

choice because we can drive there with the wheelchair and traction. Getting on a

plane would mean not being able to bring his traction.

To be honest, I am not looking forward to getting rid of the traction, it has

been great!! I never thought I would say that five months ago but besides a few

loose pins that needed to be replaced and one infected pin sight, it has been

easy. To see him so upright is great!! he doesn't mind it at all!!

Thanks again for all your help,

Connie

Connie/

Hi Connie,

I've been thinking about your post, and wanted to

help. Not sure if I can help, but I do have some

thoughts on this... you wrote:

<<...our Doc's surgery of choice is using the growing

rods in the same way as the VEPTR on one side however

he is quite convinced that on the other side, he'll

need to do one rod down the spine because of the spine

rotation.>>

<<Another point he made is that the growing rod is

much smaller in size then the VEPTR rod.>>

<<He is very very very floppy and his muscles are very

weak. He cannot walk or weight bear at all.>>

My first reaction is to get an opinion from a VEPTR

doc who has treated children with similar physical

conditions as . His muscle structure and the

floppiness he has will be a big part in what the right

choice for surgery should be. I would want to find

out the success rate for both growing-type rods, and

VEPTR in kids like him. It sounds like your doc has

been approved to do VEPTR, but hasn't done many (if

any?) personally, so he doesn't have the direct

expertise to make an informed recommendation, maybe?

I don't know if the docs in San do either.

I'd want to know how many kids like they have

treated, successfully.

The old (not so old because VEPTR isn't old) school of

thought is that the VEPTR devices will not address

rotation. I've known kids who have had very good

rotational improvement, especially when their spines

are very flexible and pliable. I wouldn't write VEPTR

off completely, until you hear at least one other

opinion about this. I'd be sending his file to other

VEPTR docs (ie, drs. Emans, Betz, , etc.) to

see if they would give you an opinion without seeing

him in person.

Another factor is repeated surgeries. This is a harsh

reality with both VEPTR and growing rods. Some kids

just can't tolerate repeated anesthesia. If

has a problem with anesthesia (you didn't write

anything that suggested he does, just an outside

observation) or if he has such thin skin that

repeatedly opening and closing an incision would be a

challenge, you may want to ask about more permanent

(fusion) options sooner than later. Many kids who

seem medically fragile do fine with both these

situations (anesthesia and thin skin).

I don't know the actual size difference between

growing rods and VEPTR rods. I do know that if his

body is going to depend greatly on rods for support,

you want something that will be very strong and very

supportive. The VEPTR and growing rods both are

literally internal braces. These devices are what

supports the spine, chest, and entire trunk of the

patient. Having a thinner rod may be nice

cosmetically, but is it the right answer for someone

who needs major support?

I hope you find some answers very soon. I can imagine

you'd like to get rid of that halo soon so he isn't

anchored anymore. But maybe its also giving him a

quality of life he needs. Good luck with everything.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, GERD, and

Braydon 11, 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, pes cavus,

SUA, GERD, Gastroparesis, etc. http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

http://health./group/CongenitalScoliosisSupport/

__________________________________________________________

Don't get soaked. Take a quick peek at the forecast

with the Search weather shortcut.

http://tools.search./shortcuts/#loc_weather

________________________________________________________________________

AOL now offers free email to everyone. Find out more about what's free from AOL

at AOL.com.

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Connie,

Did they say why they couldn't see him with the traction? Moriah went in halo

and traction to have her first Veptrs placed. They put the Veptrs in before

removing the halo just to be sure they had everything where they wanted it. The

only problem we ran into was anchoring one side high enough. Dr. was

her surgeon. I am sure he would do a wonderful job and would not accept

unless he was felt he could help him.

Shellie

tovi39@... wrote:

Carmell,

You are ALWAYS so incredibly helpful and your way of explaining things is

awesome!!! Thank you so much.

Just to touch on a couple of things you mentioned....You said that finding a doc

who has treated someone like would be key. Well there lies the problem.

We have of yet to find another child like him (physically) none of his docs have

been able to find any and this would include an array of specialists from three

different states. He has baffled the best of them!!!

He does well with anesthesia there is no problem there.

I have worked so hard at getting an appointment with San , do you really

think it's not the best choice? Also I was told today they might not be able to

see him with the halo traction.. I'm not sure why. San was our first

choice because we can drive there with the wheelchair and traction. Getting on a

plane would mean not being able to bring his traction.

To be honest, I am not looking forward to getting rid of the traction, it has

been great!! I never thought I would say that five months ago but besides a few

loose pins that needed to be replaced and one infected pin sight, it has been

easy. To see him so upright is great!! he doesn't mind it at all!!

Thanks again for all your help,

Connie

Connie/

Hi Connie,

I've been thinking about your post, and wanted to

help. Not sure if I can help, but I do have some

thoughts on this... you wrote:

<<...our Doc's surgery of choice is using the growing

rods in the same way as the VEPTR on one side however

he is quite convinced that on the other side, he'll

need to do one rod down the spine because of the spine

rotation.>>

<<Another point he made is that the growing rod is

much smaller in size then the VEPTR rod.>>

<<He is very very very floppy and his muscles are very

weak. He cannot walk or weight bear at all.>>

My first reaction is to get an opinion from a VEPTR

doc who has treated children with similar physical

conditions as . His muscle structure and the

floppiness he has will be a big part in what the right

choice for surgery should be. I would want to find

out the success rate for both growing-type rods, and

VEPTR in kids like him. It sounds like your doc has

been approved to do VEPTR, but hasn't done many (if

any?) personally, so he doesn't have the direct

expertise to make an informed recommendation, maybe?

I don't know if the docs in San do either.

I'd want to know how many kids like they have

treated, successfully.

The old (not so old because VEPTR isn't old) school of

thought is that the VEPTR devices will not address

rotation. I've known kids who have had very good

rotational improvement, especially when their spines

are very flexible and pliable. I wouldn't write VEPTR

off completely, until you hear at least one other

opinion about this. I'd be sending his file to other

VEPTR docs (ie, drs. Emans, Betz, , etc.) to

see if they would give you an opinion without seeing

him in person.

Another factor is repeated surgeries. This is a harsh

reality with both VEPTR and growing rods. Some kids

just can't tolerate repeated anesthesia. If

has a problem with anesthesia (you didn't write

anything that suggested he does, just an outside

observation) or if he has such thin skin that

repeatedly opening and closing an incision would be a

challenge, you may want to ask about more permanent

(fusion) options sooner than later. Many kids who

seem medically fragile do fine with both these

situations (anesthesia and thin skin).

I don't know the actual size difference between

growing rods and VEPTR rods. I do know that if his

body is going to depend greatly on rods for support,

you want something that will be very strong and very

supportive. The VEPTR and growing rods both are

literally internal braces. These devices are what

supports the spine, chest, and entire trunk of the

patient. Having a thinner rod may be nice

cosmetically, but is it the right answer for someone

who needs major support?

I hope you find some answers very soon. I can imagine

you'd like to get rid of that halo soon so he isn't

anchored anymore. But maybe its also giving him a

quality of life he needs. Good luck with everything.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, GERD, and

Braydon 11, 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, pes cavus,

SUA, GERD, Gastroparesis, etc. http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

http://health./group/CongenitalScoliosisSupport/

__________________________________________________________

Don't get soaked. Take a quick peek at the forecast

with the Search weather shortcut.

http://tools.search./shortcuts/#loc_weather

__________________________________________________________

AOL now offers free email to everyone. Find out more about what's free from AOL

at AOL.com.

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