Re: Staples as tx for scoliosis

[Guest guest]

Hi Aekta:

I would love to see the article if you can post it. I think it may be a case of

the newspaper selectively leaving things out as I know that Dr. D' was one

of the doctors at the training in Philly with Dr. Mehta this fall. So she's

definitely trained to cast and I assume either doing it or gearing Philly up to

do it.

I have read about staples (from someone on this site) and am also very curious

about them and would love to have articles to take to my doctor if our daughter

starts curving again.

Thanks!

E

________________________________

From: infantile scoliosis treatment on behalf of babymaxpd

Sent: Tue 3/6/2007 9:06 PM

infantile scoliosis treatment

Subject: Staples as tx for scoliosis

So my husband worked in a neighboring town and while having lunch he

picked up their local newspaper. He found a fairly long article

titled " Doctors work to straighten spines while they grow. " I tried

to find a link on-line for the article and have been unable to

locate it.

Briefly, Dr. D' of Shriners Hospital for Children in

Philadelphia indicate that staples as an alternative to wearing a

brace. She indicates this is a " godsend for the children who

otherwise would be wearing a brace for 10 years of their life. " She

has put staples in children as young as 3 years old. She does

indicate that treatment depends on the degree of the curve. The

article discusses growing rod in comparison to bracing and staples.

Dr. D' hopes to conduct a study on the staples in patients

later this year.

I found it interesting that casting was not even mentioned as a

treatment alternative.

Anyone have any thoughts on this treatment as an option?

If anyone is interested in this article, I'll be more than happy to

mail you a copy.

Aekta

[Guest guest]

I have heard of that treatment. I don't know much about it...but I would leave

Lexi in a brace until the cows came home before I put any hardware of any kind

in her spine. Like I said though..I have not heard the details on this procedure

but a brace isn't hurting anything. In college we learned that any new tx, drug

...you have it takes at least 10 -15 years to get a really good study of any long

term effects once approved and put into the mass public. I'd like to see a link

to this article though if possible.

Tracey

Staples as tx for scoliosis

So my husband worked in a neighboring town and while having lunch he

picked up their local newspaper. He found a fairly long article

titled " Doctors work to straighten spines while they grow. " I tried

to find a link on-line for the article and have been unable to

locate it.

Briefly, Dr. D' of Shriners Hospital for Children in

Philadelphia indicate that staples as an alternative to wearing a

brace. She indicates this is a " godsend for the children who

otherwise would be wearing a brace for 10 years of their life. " She

has put staples in children as young as 3 years old. She does

indicate that treatment depends on the degree of the curve. The

article discusses growing rod in comparison to bracing and staples.

Dr. D' hopes to conduct a study on the staples in patients

later this year.

I found it interesting that casting was not even mentioned as a

treatment alternative.

Anyone have any thoughts on this treatment as an option?

If anyone is interested in this article, I'll be more than happy to

mail you a copy.

Aekta

[Guest guest]

dr. betz and dr. d'andrea are reknowned for this type of surgery. philly is the

premiere location. here are a couple of abstracts that i got from pubmed. i

don't have access to the full length articles right now, but i could get them if

anyone is interested. on other scoliosis group message boards, there have been

parents who have gone through this surgery describe their experience and

outcomes. it is a relatively new type of " fusionless " surgery for treatment of

scoliosis but seems promising. i do know that dr. betz has discussed more

recent data regarding his patients with new parents considering the surgery.

when reading and " talking " with these parents regarding stapling, i realized

something. lucas has been dealing with braces and casts since 18 mos. he

doesn't know anything different. this is the norm for him. so far (and i'm

very thankful for this), he doesn't give me or my husband any difficulty when it

is time to put his brace back on. for those kids whose scoliosis is discovered

when they're a bit older (5 and up), i think it is harder to come to grips with

wearing a brace every day. they are independent people who have their own

opinions. they remember what it was like before wearing a brace. i do believe

that this plays a role when parents have to decide what treatment option they

are going to go with. i am not in their shoes, but hope that they have

researched enough to make an informed decision about treatment options that is

best for their child and family.

just my 2 cents,

deshea

p.s. there are quite a few articles on animal models using this type of surgery.

i didn't include them here.

Spine. 2003 Oct 15;28(20):S255-65.Click here to read Links

An innovative technique of vertebral body stapling for the treatment of

patients with adolescent idiopathic scoliosis: a feasibility, safety, and

utility study.

* Betz RR,

* Kim J,

* D' LP,

* Mulcahey MJ,

* Balsara RK,

* Clements DH.

Shriners Hospitals for Children, Philadelphia, PA 19140, USA.

rbetz@...

STUDY DESIGN: Retrospective review. OBJECTIVES: To report the feasibility,

safety, and utility of vertebral body stapling without fusion as an alternative

treatment for adolescent idiopathic scoliosis. SUMMARY OF BACKGROUND DATA: The

success rate of brace treatment of adolescent idiopathic scoliosis ranges from

50% to 82%. However, poor self-image and brace compliance are issues for the

patient. An alternative method of treatment such as a motion-preserving

vertebral body stapling to provide curve stability would be desirable. METHODS:

We retrospectively reviewed 21 patients (27 curves) with adolescent idiopathic

scoliosis treated with vertebral body stapling. Patients were immature as

defined by Risser sign <or=2. RESULTS: The concept of vertebral body stapling of

the convex side of a patient with adolescent idiopathic scoliosis is feasible.

The procedure was safe, with no major complications and three minor

complications. One patient had an intraoperative segmental vein !

bleed resulting in an increased estimated blood loss of 1500 cc as compared to

the average estimated blood loss of 247 cc for all patients. One patient had a

chylothorax and one pancreatitis. No patient has had a staple dislodge or move

during the follow-up period (mean 11 months, range 3-36 months), and no adverse

effects specifically from the staples have been identified. Utility (defined as

curve stability) was evaluated in 10 patients with stapling with greater than

1-year follow-up (mean 22.6 months) and preoperative curve <50 degrees.

Progression of >or=6 degrees or beyond 50 degrees was considered a failure of

treatment. Of these 10 patients, 6 (60%) remained stable or improved and 4 (40%)

progressed. One of 10 (10%) in the stapling group had progressed beyond 50

degrees and went on to fusion. Six patients required stapling of a second curve,

three as part of the primary surgery, and three as a second stage, because a

second untreated curve progressed. The results need !

to be considered with caution, as the follow-up is still short. CONCLUSIONS: The

data demonstrate that vertebral body stapling for the treatment of scoliosis in

the adolescent was feasible and safe in this group of 21 patients. In the

short-term, stapling appears to have utility in stabilizing curves of

progressive adolescent idiopathic scoliosis.

Clin Orthop Relat Res. 2005 May;(434):55-60.Click here to read Links

Vertebral body stapling procedure for the treatment of scoliosis in the

growing child.

* Betz RR,

* D' LP,

* Mulcahey MJ,

* Chafetz RS.

Shriners Hospitals for Children, Philadelphia, PA, USA. RandalBetz@...

Thirty-nine consecutive patients have had vertebral body stapling of 52

curves (26 patients with one curve stapled and 13 with two). For the group with

patients who were 8 years or older with less than 50 degrees preoperative curve

and a minimum 1-year followup, coronal curve stability was 87% when defined by

progression less than or equal to 10 degrees . Fusion was necessary in two

patients. No curves less than 30 degrees at the time of stapling progressed

greater than or equal to 10 degrees . Major complications occurred in one

patient (2.6%, diaphragmatic hernia) and minor complications occurred in five

patients (13%). Further followup of the patient cohort and further research into

efficacy and indications are warranted.

---- Original message ----

>Date: Tue, 6 Mar 2007 21:48:01 -0600

>

>Subject: Re: Staples as tx for scoliosis

><infantile scoliosis treatment >

>

> I have heard of that treatment. I don't know much

> about it...but I would leave Lexi in a brace until

> the cows came home before I put any hardware of any

> kind in her spine. Like I said though..I have not

> heard the details on this procedure but a brace

> isn't hurting anything. In college we learned that

> any new tx, drug ..you have it takes at least 10 -15

> years to get a really good study of any long term

> effects once approved and put into the mass public.

> I'd like to see a link to this article though if

> possible.

>

> Tracey

> Staples as tx for

> scoliosis

>

> So my husband worked in a neighboring town and while

> having lunch he

> picked up their local newspaper. He found a fairly

> long article

> titled " Doctors work to straighten spines while they

> grow. " I tried

> to find a link on-line for the article and have been

> unable to

> locate it.

>

> Briefly, Dr. D' of Shriners Hospital for

> Children in

> Philadelphia indicate that staples as an alternative

> to wearing a

> brace. She indicates this is a " godsend for the

> children who

> otherwise would be wearing a brace for 10 years of

> their life. " She

> has put staples in children as young as 3 years old.

> She does

> indicate that treatment depends on the degree of the

> curve. The

> article discusses growing rod in comparison to

> bracing and staples.

> Dr. D' hopes to conduct a study on the staples

> in patients

> later this year.

>

> I found it interesting that casting was not even

> mentioned as a

> treatment alternative.

>

> Anyone have any thoughts on this treatment as an

> option?

>

> If anyone is interested in this article, I'll be

> more than happy to

> mail you a copy.

>

> Aekta

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

I'd like to second what Tracey has said. I would also advocate casting over

surgery, if it is in fact viable to do so! This is not to say I am not a strong

advocate of surgery-I am! wouldn't be here today without his MAJOR open

heart surgeries, plus numberous other smaller sugeries.

I too would like to get a copy of that paper. I'd still be inclined to try a

HALO and a VEPTR HYBRID before stapling and touching that spine. (Again, Tracey,

we are on the same wave length here.) Once all else fails, I would be happy to

resort to what else can be offered for my child! Everyone has to make their own

informed choices and we all do the best with the knowledge we have at the

time!!! (I had in a completely useless brace for 2 years!)

Casting, although non surgical, offers childrens something no surgery can-a

potential cure. I acknowledge and respect casting for more than what it appears.

Surgery is reveered because of it's ability to get results, and change an

otherwise disasterous situation into a better one. Surgery should be respected.

(and is) But what about casting? What are the results? To completely rid the

child of the deformity altogether if treated early!

Surely that is by far the BEST result of all, and a better option as it is non

invasive. Therefore, casting should be as respected, if not MORE than surgery,

because of the results and power it holds to CURE progressive infantile

scoliosis are second to none.

There would be so much less stapling, bracing for 10 years, and other surgical

intervention if children who were diagnosed with PROGRESSIVE INFANTILE SCOLIOSIS

were treated early and correctly.

Still, I'd like to see the article!

I've really said my piece today haven't I!!! I am passionate about it! Sorry!

Love

pthahn@...> wrote:

I have heard of that treatment. I don't know much about it...but I

would leave Lexi in a brace until the cows came home before I put any hardware

of any kind in her spine. Like I said though..I have not heard the details on

this procedure but a brace isn't hurting anything. In college we learned that

any new tx, drug ..you have it takes at least 10 -15 years to get a really good

study of any long term effects once approved and put into the mass public. I'd

like to see a link to this article though if possible.

Tracey

Staples as tx for scoliosis

So my husband worked in a neighboring town and while having lunch he

picked up their local newspaper. He found a fairly long article

titled " Doctors work to straighten spines while they grow. " I tried

to find a link on-line for the article and have been unable to

locate it.

Briefly, Dr. D' of Shriners Hospital for Children in

Philadelphia indicate that staples as an alternative to wearing a

brace. She indicates this is a " godsend for the children who

otherwise would be wearing a brace for 10 years of their life. " She

has put staples in children as young as 3 years old. She does

indicate that treatment depends on the degree of the curve. The

article discusses growing rod in comparison to bracing and staples.

Dr. D' hopes to conduct a study on the staples in patients

later this year.

I found it interesting that casting was not even mentioned as a

treatment alternative.

Anyone have any thoughts on this treatment as an option?

If anyone is interested in this article, I'll be more than happy to

mail you a copy.

Aekta

[Guest guest]

Well, the article I read ( and linked to) did state that this stapling was

visited as an option some years ago, but failed due to the staples falling into

the chest ( wall I guess? ). Now they say they have redesigned the staples and

technology has afforded them to believe that will not happen with the new

staples. That is too much of an unknown for me. If given the option between this

and something else...I would have to go with something else. I found another

article ( somewhere in Austraila) saying it has not emerged there and is stil in

experimental/trial stages here in the US. I am not saying surgery is evil, and I

realize some are left with no other option.

I also understand that for some older children, wearing a brace is not the most

attractive thing...but I would never let Lexi make that decision still living

under my roof. If a brace is getting correction, then I would not allow

something surgical to be done. Casting, VEPTR, bracing in some techniques used

do get results ( we have benefitted ourselves from 2 of those choices - Lexi

doesn't even have scoliosis anymore technically thanks to casting, bracing AND

early treatment most importantly ) and I would go with something tried and true.

This stapling to me is just still to new, but again it is an individual choice.

Like said...early treatment is the key and if you are using an

effective method of treatment to treat early then I think the job is being done.

I do hope this stapling works for those choosing to go that route, it would be

great for those left with no option but surgery where maybe VEPTR can't be done.

Like ...I will now also step down from my soap box and let someone else

take the podium.

Tracey

Staples as tx for scoliosis

So my husband worked in a neighboring town and while having lunch he

picked up their local newspaper. He found a fairly long article

titled " Doctors work to straighten spines while they grow. " I tried

to find a link on-line for the article and have been unable to

locate it.

Briefly, Dr. D' of Shriners Hospital for Children in

Philadelphia indicate that staples as an alternative to wearing a

brace. She indicates this is a " godsend for the children who

otherwise would be wearing a brace for 10 years of their life. " She

has put staples in children as young as 3 years old. She does

indicate that treatment depends on the degree of the curve. The

article discusses growing rod in comparison to bracing and staples.

Dr. D' hopes to conduct a study on the staples in patients

later this year.

I found it interesting that casting was not even mentioned as a

treatment alternative.

Anyone have any thoughts on this treatment as an option?

If anyone is interested in this article, I'll be more than happy to

mail you a copy.

Aekta

[Guest guest]

After reading and Tracey's post I agree with them. Better to cast

first, with the possiblity of a cure than wait and have surgery(for

non-structural cases). I would be leery of staples as well. Not just because

they are new, but because they are on a growing spine. I love the VEPTR (and it

is still considered new) because it stays away from the spine via Hybrid option.

What I don't get is why Dr. D', who is trained to cast children thus

treating them early, is putting staples in kids. Are these children candidates

for casting? ARe they congential and need surgery? Why not the VEPTR? Also,

why aren't more docs doing papers on Early Treatment?

Shellie

Tracey wrote:

Well, the article I read ( and linked to) did state that this stapling

was visited as an option some years ago, but failed due to the staples falling

into the chest ( wall I guess? ). Now they say they have redesigned the staples

and technology has afforded them to believe that will not happen with the new

staples. That is too much of an unknown for me. If given the option between this

and something else...I would have to go with something else. I found another

article ( somewhere in Austraila) saying it has not emerged there and is stil in

experimental/trial stages here in the US. I am not saying surgery is evil, and I

realize some are left with no other option.

I also understand that for some older children, wearing a brace is not the most

attractive thing...but I would never let Lexi make that decision still living

under my roof. If a brace is getting correction, then I would not allow

something surgical to be done. Casting, VEPTR, bracing in some techniques used

do get results ( we have benefitted ourselves from 2 of those choices - Lexi

doesn't even have scoliosis anymore technically thanks to casting, bracing AND

early treatment most importantly ) and I would go with something tried and true.

This stapling to me is just still to new, but again it is an individual choice.

Like said...early treatment is the key and if you are using an effective

method of treatment to treat early then I think the job is being done. I do hope

this stapling works for those choosing to go that route, it would be great for

those left with no option but surgery where maybe VEPTR can't be done.

Like ...I will now also step down from my soap box and let someone else

take the podium.

Tracey

Staples as tx for scoliosis

So my husband worked in a neighboring town and while having lunch he

picked up their local newspaper. He found a fairly long article

titled " Doctors work to straighten spines while they grow. " I tried

to find a link on-line for the article and have been unable to

locate it.

Briefly, Dr. D' of Shriners Hospital for Children in

Philadelphia indicate that staples as an alternative to wearing a

brace. She indicates this is a " godsend for the children who

otherwise would be wearing a brace for 10 years of their life. " She

has put staples in children as young as 3 years old. She does

indicate that treatment depends on the degree of the curve. The

article discusses growing rod in comparison to bracing and staples.

Dr. D' hopes to conduct a study on the staples in patients

later this year.

I found it interesting that casting was not even mentioned as a

treatment alternative.

Anyone have any thoughts on this treatment as an option?

If anyone is interested in this article, I'll be more than happy to

mail you a copy.

Aekta

[Guest guest]

Have soap box, will travel!!!!!!!!!!!! :0)

Love ya ladies!

Shellie

monique garcia wrote:

I'd like to second what Tracey has said. I would also advocate casting

over surgery, if it is in fact viable to do so! This is not to say I am not a

strong advocate of surgery-I am! wouldn't be here today without his MAJOR

open heart surgeries, plus numberous other smaller sugeries.

I too would like to get a copy of that paper. I'd still be inclined to try a

HALO and a VEPTR HYBRID before stapling and touching that spine. (Again, Tracey,

we are on the same wave length here.) Once all else fails, I would be happy to

resort to what else can be offered for my child! Everyone has to make their own

informed choices and we all do the best with the knowledge we have at the

time!!! (I had in a completely useless brace for 2 years!)

Casting, although non surgical, offers childrens something no surgery can-a

potential cure. I acknowledge and respect casting for more than what it appears.

Surgery is reveered because of it's ability to get results, and change an

otherwise disasterous situation into a better one. Surgery should be respected.

(and is) But what about casting? What are the results? To completely rid the

child of the deformity altogether if treated early!

Surely that is by far the BEST result of all, and a better option as it is non

invasive. Therefore, casting should be as respected, if not MORE than surgery,

because of the results and power it holds to CURE progressive infantile

scoliosis are second to none.

There would be so much less stapling, bracing for 10 years, and other surgical

intervention if children who were diagnosed with PROGRESSIVE INFANTILE SCOLIOSIS

were treated early and correctly.

Still, I'd like to see the article!

I've really said my piece today haven't I!!! I am passionate about it! Sorry!

Love

pthahn@...> wrote:

I have heard of that treatment. I don't know much about it...but I would leave

Lexi in a brace until the cows came home before I put any hardware of any kind

in her spine. Like I said though..I have not heard the details on this procedure

but a brace isn't hurting anything. In college we learned that any new tx, drug

...you have it takes at least 10 -15 years to get a really good study of any long

term effects once approved and put into the mass public. I'd like to see a link

to this article though if possible.

Tracey

Staples as tx for scoliosis

So my husband worked in a neighboring town and while having lunch he

picked up their local newspaper. He found a fairly long article

titled " Doctors work to straighten spines while they grow. " I tried

to find a link on-line for the article and have been unable to

locate it.

Briefly, Dr. D' of Shriners Hospital for Children in

Philadelphia indicate that staples as an alternative to wearing a

brace. She indicates this is a " godsend for the children who

otherwise would be wearing a brace for 10 years of their life. " She

has put staples in children as young as 3 years old. She does

indicate that treatment depends on the degree of the curve. The

article discusses growing rod in comparison to bracing and staples.

Dr. D' hopes to conduct a study on the staples in patients

later this year.

I found it interesting that casting was not even mentioned as a

treatment alternative.

Anyone have any thoughts on this treatment as an option?

If anyone is interested in this article, I'll be more than happy to

mail you a copy.

Aekta

[Guest guest]

The abstract doesn't look impressive. They barely have a 50/50 ratio of sucess.

Why didn't they treat both curves at once? Oh and they are doing this to

adolescents. Is D' working on adolescents or infants, or both, and who is

getting staples? Didn't someone write that a child as young as 3 got them? I

wouldn't be jumping into this any time soon. I would love to read more abstracts

and see what their results are.

Shellie (Probably 5 cents worth, sorry)

" Deshea L. " wrote:

dr. betz and dr. d'andrea are reknowned for this type of surgery.

philly is the premiere location. here are a couple of abstracts that i got from

pubmed. i don't have access to the full length articles right now, but i could

get them if anyone is interested. on other scoliosis group message boards, there

have been parents who have gone through this surgery describe their experience

and outcomes. it is a relatively new type of " fusionless " surgery for treatment

of scoliosis but seems promising. i do know that dr. betz has discussed more

recent data regarding his patients with new parents considering the surgery.

when reading and " talking " with these parents regarding stapling, i realized

something. lucas has been dealing with braces and casts since 18 mos. he doesn't

know anything different. this is the norm for him. so far (and i'm very thankful

for this), he doesn't give me or my husband any difficulty when it is time to

put his brace back on. for those kids whose scoliosis is discovered when they're

a bit older (5 and up), i think it is harder to come to grips with wearing a

brace every day. they are independent people who have their own opinions. they

remember what it was like before wearing a brace. i do believe that this plays a

role when parents have to decide what treatment option they are going to go

with. i am not in their shoes, but hope that they have researched enough to make

an informed decision about treatment options that is best for their child and

family.

just my 2 cents,

deshea

p.s. there are quite a few articles on animal models using this type of surgery.

i didn't include them here.

Spine. 2003 Oct 15;28(20):S255-65.Click here to read Links

An innovative technique of vertebral body stapling for the treatment of patients

with adolescent idiopathic scoliosis: a feasibility, safety, and utility study.

* Betz RR,

* Kim J,

* D' LP,

* Mulcahey MJ,

* Balsara RK,

* Clements DH.

Shriners Hospitals for Children, Philadelphia, PA 19140, USA.

rbetz@...

STUDY DESIGN: Retrospective review. OBJECTIVES: To report the feasibility,

safety, and utility of vertebral body stapling without fusion as an alternative

treatment for adolescent idiopathic scoliosis. SUMMARY OF BACKGROUND DATA: The

success rate of brace treatment of adolescent idiopathic scoliosis ranges from

50% to 82%. However, poor self-image and brace compliance are issues for the

patient. An alternative method of treatment such as a motion-preserving

vertebral body stapling to provide curve stability would be desirable. METHODS:

We retrospectively reviewed 21 patients (27 curves) with adolescent idiopathic

scoliosis treated with vertebral body stapling. Patients were immature as

defined by Risser sign <or=2. RESULTS: The concept of vertebral body stapling of

the convex side of a patient with adolescent idiopathic scoliosis is feasible.

The procedure was safe, with no major complications and three minor

complications. One patient had an intraoperative segmental vein !

bleed resulting in an increased estimated blood loss of 1500 cc as compared to

the average estimated blood loss of 247 cc for all patients. One patient had a

chylothorax and one pancreatitis. No patient has had a staple dislodge or move

during the follow-up period (mean 11 months, range 3-36 months), and no adverse

effects specifically from the staples have been identified. Utility (defined as

curve stability) was evaluated in 10 patients with stapling with greater than

1-year follow-up (mean 22.6 months) and preoperative curve <50 degrees.

Progression of >or=6 degrees or beyond 50 degrees was considered a failure of

treatment. Of these 10 patients, 6 (60%) remained stable or improved and 4 (40%)

progressed. One of 10 (10%) in the stapling group had progressed beyond 50

degrees and went on to fusion. Six patients required stapling of a second curve,

three as part of the primary surgery, and three as a second stage, because a

second untreated curve progressed. The results

need !

to be considered with caution, as the follow-up is still short. CONCLUSIONS: The

data demonstrate that vertebral body stapling for the treatment of scoliosis in

the adolescent was feasible and safe in this group of 21 patients. In the

short-term, stapling appears to have utility in stabilizing curves of

progressive adolescent idiopathic scoliosis.

Clin Orthop Relat Res. 2005 May;(434):55-60.Click here to read Links

Vertebral body stapling procedure for the treatment of scoliosis in the growing

child.

* Betz RR,

* D' LP,

* Mulcahey MJ,

* Chafetz RS.

Shriners Hospitals for Children, Philadelphia, PA, USA. RandalBetz@...

Thirty-nine consecutive patients have had vertebral body stapling of 52 curves

(26 patients with one curve stapled and 13 with two). For the group with

patients who were 8 years or older with less than 50 degrees preoperative curve

and a minimum 1-year followup, coronal curve stability was 87% when defined by

progression less than or equal to 10 degrees . Fusion was necessary in two

patients. No curves less than 30 degrees at the time of stapling progressed

greater than or equal to 10 degrees . Major complications occurred in one

patient (2.6%, diaphragmatic hernia) and minor complications occurred in five

patients (13%). Further followup of the patient cohort and further research into

efficacy and indications are warranted.

---- Original message ----

>Date: Tue, 6 Mar 2007 21:48:01 -0600

>

>Subject: Re: Staples as tx for scoliosis

><infantile scoliosis treatment >

>

> I have heard of that treatment. I don't know much

> about it...but I would leave Lexi in a brace until

> the cows came home before I put any hardware of any

> kind in her spine. Like I said though..I have not

> heard the details on this procedure but a brace

> isn't hurting anything. In college we learned that

> any new tx, drug ..you have it takes at least 10 -15

> years to get a really good study of any long term

> effects once approved and put into the mass public.

> I'd like to see a link to this article though if

> possible.

>

> Tracey

> Staples as tx for

> scoliosis

>

> So my husband worked in a neighboring town and while

> having lunch he

> picked up their local newspaper. He found a fairly

> long article

> titled " Doctors work to straighten spines while they

> grow. " I tried

> to find a link on-line for the article and have been

> unable to

> locate it.

>

> Briefly, Dr. D' of Shriners Hospital for

> Children in

> Philadelphia indicate that staples as an alternative

> to wearing a

> brace. She indicates this is a " godsend for the

> children who

> otherwise would be wearing a brace for 10 years of

> their life. " She

> has put staples in children as young as 3 years old.

> She does

> indicate that treatment depends on the degree of the

> curve. The

> article discusses growing rod in comparison to

> bracing and staples.

> Dr. D' hopes to conduct a study on the staples

> in patients

> later this year.

>

> I found it interesting that casting was not even

> mentioned as a

> treatment alternative.

>

> Anyone have any thoughts on this treatment as an

> option?

>

> If anyone is interested in this article, I'll be

> more than happy to

> mail you a copy.

>

> Aekta

>

> [Non-text portions of this message have been

> removed]

>

>

---------------------------------

We won't tell. Get more on shows you hate to love

(and love to hate): TV's Guilty Pleasures list.

[Guest guest]

Hi Shellie, are you referring to me being on a soap box? If you are, you are

absolutely correct! And proud of it!!! . (Not sure how to do those smily faces

things, I did pretty well improvising though!!!)

Regarding your post, I also cannot understand why casting is not used

everywhere considering the results Shriners are getting. Shouldn't this be seen

as a medical breakthrough. (The answer is of course YES)

It's appalling! (But I won't go on about it)

Love

Shellie Grant wrote:

Have soap box, will travel!!!!!!!!!!!! :0)

Love ya ladies!

Shellie

monique garcia wrote:

I'd like to second what Tracey has said. I would also advocate casting over

surgery, if it is in fact viable to do so! This is not to say I am not a strong

advocate of surgery-I am! wouldn't be here today without his MAJOR open

heart surgeries, plus numberous other smaller sugeries.

I too would like to get a copy of that paper. I'd still be inclined to try a

HALO and a VEPTR HYBRID before stapling and touching that spine. (Again, Tracey,

we are on the same wave length here.) Once all else fails, I would be happy to

resort to what else can be offered for my child! Everyone has to make their own

informed choices and we all do the best with the knowledge we have at the

time!!! (I had in a completely useless brace for 2 years!)

Casting, although non surgical, offers childrens something no surgery can-a

potential cure. I acknowledge and respect casting for more than what it appears.

Surgery is reveered because of it's ability to get results, and change an

otherwise disasterous situation into a better one. Surgery should be respected.

(and is) But what about casting? What are the results? To completely rid the

child of the deformity altogether if treated early!

Surely that is by far the BEST result of all, and a better option as it is non

invasive. Therefore, casting should be as respected, if not MORE than surgery,

because of the results and power it holds to CURE progressive infantile

scoliosis are second to none.

There would be so much less stapling, bracing for 10 years, and other surgical

intervention if children who were diagnosed with PROGRESSIVE INFANTILE SCOLIOSIS

were treated early and correctly.

Still, I'd like to see the article!

I've really said my piece today haven't I!!! I am passionate about it! Sorry!

Love

pthahn@...> wrote:

I have heard of that treatment. I don't know much about it...but I would leave

Lexi in a brace until the cows came home before I put any hardware of any kind

in her spine. Like I said though..I have not heard the details on this procedure

but a brace isn't hurting anything. In college we learned that any new tx, drug

...you have it takes at least 10 -15 years to get a really good study of any long

term effects once approved and put into the mass public. I'd like to see a link

to this article though if possible.

Tracey

Staples as tx for scoliosis

So my husband worked in a neighboring town and while having lunch he

picked up their local newspaper. He found a fairly long article

titled " Doctors work to straighten spines while they grow. " I tried

to find a link on-line for the article and have been unable to

locate it.

Briefly, Dr. D' of Shriners Hospital for Children in

Philadelphia indicate that staples as an alternative to wearing a

brace. She indicates this is a " godsend for the children who

otherwise would be wearing a brace for 10 years of their life. " She

has put staples in children as young as 3 years old. She does

indicate that treatment depends on the degree of the curve. The

article discusses growing rod in comparison to bracing and staples.

Dr. D' hopes to conduct a study on the staples in patients

later this year.

I found it interesting that casting was not even mentioned as a

treatment alternative.

Anyone have any thoughts on this treatment as an option?

If anyone is interested in this article, I'll be more than happy to

mail you a copy.

Aekta

[Guest guest]

Well, I should probably keep quiet, but I feel passionately too.

I completely 100% agree w/you ladies- , Tracey, Shellie!!

Early treatment is key....

Why isn't early treatment getting the much needed, deserved recognition?

After all, Dr. D' is doing the early treatment casting, and obviously

the stapeling. I just have to throw it out there, but I guess she know's doing

the article on stapeling will get way more positive response from the community

and money, where casting may not.....

Maybe I said too much, but Early Treatment is the KEY and should get some

CREDIT!!

Love ya ladies.....

and Evan

monique garcia wrote:

Hi Shellie, are you referring to me being on a soap box? If you are,

you are absolutely correct! And proud of it!!! . (Not sure how to do those

smily faces things, I did pretty well improvising though!!!)

Regarding your post, I also cannot understand why casting is not used everywhere

considering the results Shriners are getting. Shouldn't this be seen as a

medical breakthrough. (The answer is of course YES)

It's appalling! (But I won't go on about it)

Love

Shellie Grant wrote:

Have soap box, will travel!!!!!!!!!!!! :0)

Love ya ladies!

Shellie

monique garcia wrote:

I'd like to second what Tracey has said. I would also advocate casting over

surgery, if it is in fact viable to do so! This is not to say I am not a strong

advocate of surgery-I am! wouldn't be here today without his MAJOR open

heart surgeries, plus numberous other smaller sugeries.

I too would like to get a copy of that paper. I'd still be inclined to try a

HALO and a VEPTR HYBRID before stapling and touching that spine. (Again, Tracey,

we are on the same wave length here.) Once all else fails, I would be happy to

resort to what else can be offered for my child! Everyone has to make their own

informed choices and we all do the best with the knowledge we have at the

time!!! (I had in a completely useless brace for 2 years!)

Casting, although non surgical, offers childrens something no surgery can-a

potential cure. I acknowledge and respect casting for more than what it appears.

Surgery is reveered because of it's ability to get results, and change an

otherwise disasterous situation into a better one. Surgery should be respected.

(and is) But what about casting? What are the results? To completely rid the

child of the deformity altogether if treated early!

Surely that is by far the BEST result of all, and a better option as it is non

invasive. Therefore, casting should be as respected, if not MORE than surgery,

because of the results and power it holds to CURE progressive infantile

scoliosis are second to none.

There would be so much less stapling, bracing for 10 years, and other surgical

intervention if children who were diagnosed with PROGRESSIVE INFANTILE SCOLIOSIS

were treated early and correctly.

Still, I'd like to see the article!

I've really said my piece today haven't I!!! I am passionate about it! Sorry!

Love

pthahn@...> wrote:

I have heard of that treatment. I don't know much about it...but I would leave

Lexi in a brace until the cows came home before I put any hardware of any kind

in her spine. Like I said though..I have not heard the details on this procedure

but a brace isn't hurting anything. In college we learned that any new tx, drug

...you have it takes at least 10 -15 years to get a really good study of any long

term effects once approved and put into the mass public. I'd like to see a link

to this article though if possible.

Tracey

Staples as tx for scoliosis

So my husband worked in a neighboring town and while having lunch he

picked up their local newspaper. He found a fairly long article

titled " Doctors work to straighten spines while they grow. " I tried

to find a link on-line for the article and have been unable to

locate it.

Briefly, Dr. D' of Shriners Hospital for Children in

Philadelphia indicate that staples as an alternative to wearing a

brace. She indicates this is a " godsend for the children who

otherwise would be wearing a brace for 10 years of their life. " She

has put staples in children as young as 3 years old. She does

indicate that treatment depends on the degree of the curve. The

article discusses growing rod in comparison to bracing and staples.

Dr. D' hopes to conduct a study on the staples in patients

later this year.

I found it interesting that casting was not even mentioned as a

treatment alternative.

Anyone have any thoughts on this treatment as an option?

If anyone is interested in this article, I'll be more than happy to

mail you a copy.

Aekta

[Guest guest]

i definitely hear you, monique, tracey, shellie and

jenny! points well said.

i'm definitely not trying to cause any controversy

-- just discussion :-)

that being said, for those children who are

diagnosed with JUVENILE SCOLIOSIS, early treatment

and casting are not options for getting these kids

straight. years of bracing are in fact what is ahead

of them. some parents cannot even fathom it. that is

why innovative surgery -- veptr or staping -- are

needed if parents and children will not comply with

the bracing regimen. and then again, even if you

have a brace, will it work??? of course, either

require commitment on the part of the children and

parents. surgery (of course) should not be taken

lightly. i am just trying to convey some of the

points that i have read in other scoliosis groups

on-line regarding those parents who did choose

stapling over bracing for their older children.

as always, my best,

deshea

---- Original message ----

>Date: Wed, 7 Mar 2007 15:34:14 +1100 (EST)

>From: monique garcia

>Subject: Re: Staples as tx

for scoliosis

>infantile scoliosis treatment

>

> I'd like to second what Tracey has said. I would

> also advocate casting over surgery, if it is in

fact

> viable to do so! This is not to say I am not a

> strong advocate of surgery-I am! wouldn't

be

> here today without his MAJOR open heart surgeries,

> plus numberous other smaller sugeries.

>

> I too would like to get a copy of that paper. I'd

> still be inclined to try a HALO and a VEPTR HYBRID

> before stapling and touching that spine. (Again,

> Tracey, we are on the same wave length here.) Once

> all else fails, I would be happy to resort to what

> else can be offered for my child! Everyone has to

> make their own informed choices and we all do the

> best with the knowledge we have at the time!!! (I

> had in a completely useless brace for 2

> years!)

>

> Casting, although non surgical, offers childrens

> something no surgery can-a potential cure. I

> acknowledge and respect casting for more than what

> it appears. Surgery is reveered because of it's

> ability to get results, and change an otherwise

> disasterous situation into a better one. Surgery

> should be respected. (and is) But what about

> casting? What are the results? To completely rid

the

> child of the deformity altogether if treated

early!

>

> Surely that is by far the BEST result of all, and

a

> better option as it is non

> invasive. Therefore, casting should be as

respected,

> if not MORE than surgery, because of the results

and

> power it holds to CURE progressive infantile

> scoliosis are second to none.

>

> There would be so much less stapling, bracing for

10

> years, and other surgical intervention if children

> who were diagnosed with PROGRESSIVE INFANTILE

> SCOLIOSIS were treated early and correctly.

>

> Still, I'd like to see the article!

>

> I've really said my piece today haven't I!!! I am

> passionate about it! Sorry!

>

> Love

>

> pthahn@...> wrote:

> I have heard of that treatment. I don't know much

> about it...but I would leave Lexi in a brace until

> the cows came home before I put any hardware of

any

> kind in her spine. Like I said though..I have not

> heard the details on this procedure but a brace

> isn't hurting anything. In college we learned that

> any new tx, drug ..you have it takes at least 10

-15

> years to get a really good study of any long term

> effects once approved and put into the mass

public.

> I'd like to see a link to this article though if

> possible.

>

> Tracey

> Staples as tx for

> scoliosis

>

> So my husband worked in a neighboring town and

while

> having lunch he

> picked up their local newspaper. He found a fairly

> long article

> titled " Doctors work to straighten spines while

they

> grow. " I tried

> to find a link on-line for the article and have

been

> unable to

> locate it.

>

> Briefly, Dr. D' of Shriners Hospital

for

> Children in

> Philadelphia indicate that staples as an

alternative

> to wearing a

> brace. She indicates this is a " godsend for the

> children who

> otherwise would be wearing a brace for 10 years of

> their life. " She

> has put staples in children as young as 3 years

old.

> She does

> indicate that treatment depends on the degree of

the

> curve. The

> article discusses growing rod in comparison to

> bracing and staples.

> Dr. D' hopes to conduct a study on the

staples

> in patients

> later this year.

>

> I found it interesting that casting was not even

> mentioned as a

> treatment alternative.

>

> Anyone have any thoughts on this treatment as an

> option?

>

> If anyone is interested in this article, I'll be

> more than happy to

> mail you a copy.

>

> Aekta

>

> [Non-text portions of this message have been

> removed]

>

> Send instant messages to your online friends

> http://au.messenger.

>

> [Non-text portions of this message have been

> removed]

>

>

mom to lucas 5 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;

spinal detethering due to a tight/fatty filum at 22 mos; tlso and charleston

brace from 18 mos to 2 1/2 yrs old at children's boston, ma; serial plaster

casting from 2 1/2 until 4 1/2 at shriners in erie, pa; now in a spinecor brace

at 19o/13o from montreal.

and ruby (2 1/2 yrs old and a handful!)

north of boston, ma

[Guest guest]

I think after reading some of the articles I found on stapling, it sounds as if

it is being used more in the adolescent population of patients which of course

casting is not an option for. However...I will rephrase my earlier

opinion...that decision would not be left up to Lexi if she were still a minor

living under my roof. I do understand that most kids would not want to wear a

brace, but if it were yielding positive results then she would stay in that.

Kids cann't begin to understand possible setbacks or long term effects (

especially in an unknown ) of surgery. With that said, if these children are not

getting results from a brace, then surgery is the next viable option...but why

not something like VEPTR? Can't that be used in adolescents as well?

As also emphasized...articles are being done on this stapling and getting

these docs some recognition amonsgt their peer groups. Are they getting

something back from the company making these devices ( the staples ) in terms of

money, help in funding the procedures and possible studies? Casting doesn't seem

like a lucrative venture, and sadly alot of docs are in it to make money while

helping hte patients as well. Stapling in adolescents...ok fine if there are no

other options like the casting or bracing and if VEPTR isn't an option for them.

I have to strongly disagree though trying it in the younger toddlers and

children though...someone mentioned earlier...these are still GROWING spines.

Who knows what drives it all.

Again, this whole thread could start a firestorm of different opinions which is

fine, nothing wrong with a healthy debate, but I think we all agree on early

treatment which is the KEY!!

Tracey

Staples as tx for scoliosis

So my husband worked in a neighboring town and while having lunch he

picked up their local newspaper. He found a fairly long article

titled " Doctors work to straighten spines while they grow. " I tried

to find a link on-line for the article and have been unable to

locate it.

Briefly, Dr. D' of Shriners Hospital for Children in

Philadelphia indicate that staples as an alternative to wearing a

brace. She indicates this is a " godsend for the children who

otherwise would be wearing a brace for 10 years of their life. " She

has put staples in children as young as 3 years old. She does

indicate that treatment depends on the degree of the curve. The

article discusses growing rod in comparison to bracing and staples.

Dr. D' hopes to conduct a study on the staples in patients

later this year.

I found it interesting that casting was not even mentioned as a

treatment alternative.

Anyone have any thoughts on this treatment as an option?

If anyone is interested in this article, I'll be more than happy to

mail you a copy.

Aekta

[Guest guest]

tracey (i think we posted at the same time),

as always, well said, and i agree with your points whole heartedly! sadly, it

always seems to be about the $.

one advantage of stapling over veptr (theoretically) is that it is a one time

surgery versus expansions with the veptr. ????

along those lines, do you know what the requirements are for the veptr in the

idiopathic cases (i need help from the resident experts!)? since veptr is

supposed to help with lung function first and foremost does that mean curve size

is not as much of a concern. so if a parent gets a diagnosis of scoliosis for

their older (and i mean over 5 yrs old) child with a relatively small curve that

is not affecting lung function, veptr would not be a possibility or even

suggested by an ortho. right? so the parents are left with bracing (with not

so great results) or possibly stapling. i'm just trying to get a feel for what

options are out there for the older child (juvenile or adolescent).

one thing that popped into my head -- i believe that i did read somewhere that

the stapling is for curves that are on the smaller side (25 - 40? approximately)

and for a child that has a lot of growing. so not the older adolescent child.

this is off the top of my head so i might be slightly off on my numbers.

for what it's worth, i did ask dr. rivard when we were in montreal in jan

regarding stapling. he thinks it is too early to tell, but he would not

recommend it. i didn't understand his explanation entirely, but he doesn't

believe that the staples can address rotation. you are putting the staple on

the convex side of the curve where the growth plate is. this slows down the

growth on that side and allows the concave side to " catch up " . yes, height is

slightly reduced, but theoretically the spine can grow straight. dr. rivard

wondered about rotation and thought the staple would not address this issue.

then he mentioned something about where a staple would have to be to address

that, but it is nearly impossible or possibly dangerous place to have it so that

is why they are not doing it.

just more questions and not a lot of answers -- as usual :-)

deshea

---- Original message ----

>Date: Wed, 7 Mar 2007 09:51:38 -0600

>

>Subject: Re: Staples as tx for scoliosis

><infantile scoliosis treatment >

>

> I think after reading some of the articles I found

> on stapling, it sounds as if it is being used more

> in the adolescent population of patients which of

> course casting is not an option for. However...I

> will rephrase my earlier opinion...that decision

> would not be left up to Lexi if she were still a

> minor living under my roof. I do understand that

> most kids would not want to wear a brace, but if it

> were yielding positive results then she would stay

> in that. Kids cann't begin to understand possible

> setbacks or long term effects ( especially in an

> unknown ) of surgery. With that said, if these

> children are not getting results from a brace, then

> surgery is the next viable option...but why not

> something like VEPTR? Can't that be used in

> adolescents as well?

> As also emphasized...articles are being done

> on this stapling and getting these docs some

> recognition amonsgt their peer groups. Are they

> getting something back from the company making these

> devices ( the staples ) in terms of money, help in

> funding the procedures and possible studies? Casting

> doesn't seem like a lucrative venture, and sadly

> alot of docs are in it to make money while helping

> hte patients as well. Stapling in adolescents...ok

> fine if there are no other options like the casting

> or bracing and if VEPTR isn't an option for them. I

> have to strongly disagree though trying it in the

> younger toddlers and children though...someone

> mentioned earlier...these are still GROWING spines.

> Who knows what drives it all.

> Again, this whole thread could start a firestorm of

> different opinions which is fine, nothing wrong with

> a healthy debate, but I think we all agree on early

> treatment which is the KEY!!

>

> Tracey

> Staples as tx for

> scoliosis

>

> So my husband worked in a neighboring town and while

> having lunch he

> picked up their local newspaper. He found a fairly

> long article

> titled " Doctors work to straighten spines while they

> grow. " I tried

> to find a link on-line for the article and have been

> unable to

> locate it.

>

> Briefly, Dr. D' of Shriners Hospital for

> Children in

> Philadelphia indicate that staples as an alternative

> to wearing a

> brace. She indicates this is a " godsend for the

> children who

> otherwise would be wearing a brace for 10 years of

> their life. " She

> has put staples in children as young as 3 years old.

> She does

> indicate that treatment depends on the degree of the

> curve. The

> article discusses growing rod in comparison to

> bracing and staples.

> Dr. D' hopes to conduct a study on the staples

> in patients

> later this year.

>

> I found it interesting that casting was not even

> mentioned as a

> treatment alternative.

>

> Anyone have any thoughts on this treatment as an

> option?

>

> If anyone is interested in this article, I'll be

> more than happy to

> mail you a copy.

>

> Aekta

>

> [Non-text portions of this message have been

> removed]

>

> Send instant messages to your online friends

> http://au.messenger.

>

> [Non-text portions of this message have been

> removed]

>

> ---------------------------------

> TV dinner still cooling?

> Check out " Tonight's Picks " on TV.

>

> [Non-text portions of this message have been

> removed]

>

> Send instant messages to your online friends

> http://au.messenger.

>

> [Non-text portions of this message have been

> removed]

>

> ---------------------------------

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> Marketing.

>

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> removed]

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

I think we were both hitting send at the same time too! LOL

I do not know all of the requirements for VEPTR, but do understand it wasn't

meant to manage scoliosis just in itself. With that said though, it seems to be

proving very effective even in children where the lungs are not a major issue. I

don't know all the ins and outs of the VEPTR, and do also realize it is more

than just one go with the VEPTR --- requiring multiple expansions.

It just seems there has to be something else out there that doesn't put this

hardware straight on the spine/vertebra. You are right too...I also read where

it is used on smaller curves, I read 38 degrees at the most thus far in their

trial patients. I totally get where you are coming from though...trying to

figure out what all options are out there for this population of patients. I'd

also be curious to know how many adolescent ( in rough percentage terms ) cases

progress to moderate/ severe numbers? It seems to me it would be a small number.

I just fear they are starting these " new " things out on the older kids and want

to jump in to using it on the smaller ones without knowing everything.

I'd still like to see that article where they used it on a 3 yr old...that is

SCARY to me.

Tracey

Staples as tx for

> scoliosis

>

> So my husband worked in a neighboring town and while

> having lunch he

> picked up their local newspaper. He found a fairly

> long article

> titled " Doctors work to straighten spines while they

> grow. " I tried

> to find a link on-line for the article and have been

> unable to

> locate it.

>

> Briefly, Dr. D' of Shriners Hospital for

> Children in

> Philadelphia indicate that staples as an alternative

> to wearing a

> brace. She indicates this is a " godsend for the

> children who

> otherwise would be wearing a brace for 10 years of

> their life. " She

> has put staples in children as young as 3 years old.

> She does

> indicate that treatment depends on the degree of the

> curve. The

> article discusses growing rod in comparison to

> bracing and staples.

> Dr. D' hopes to conduct a study on the staples

> in patients

> later this year.

>

> I found it interesting that casting was not even

> mentioned as a

> treatment alternative.

>

> Anyone have any thoughts on this treatment as an

> option?

>

> If anyone is interested in this article, I'll be

> more than happy to

> mail you a copy.

>

> Aekta

>

> [Non-text portions of this message have been

> removed]

>

> Send instant messages to your online friends

> http://au.messenger.

>

> [Non-text portions of this message have been

> removed]

>

> ---------------------------------

> TV dinner still cooling?

> Check out " Tonight's Picks " on TV.

>

> [Non-text portions of this message have been

> removed]

>

> Send instant messages to your online friends

> http://au.messenger.

>

> [Non-text portions of this message have been

> removed]

>

> ---------------------------------

> The fish are biting.

> Get more visitors on your site using Search

> Marketing.

>

> [Non-text portions of this message have been

> removed]

>

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> removed]

>

>

[Guest guest]

I need to read up more on VEPTR, but what makes it a better option than

stapling other than the proximity to the spine? Can a kid with VEPTR do

everything a kid without hardware can do- like summersaults, back bends,

or is it just growing rods that really constrict the movement?

Hopefully we never need to consider either, but I keep reading emails

about the VEPTR kids hardware breaking and having to go through more

surgeries which doesn't sound so great to me. I am trying to stay

positive but so far the casting and bracing hasn't worked for us so I

like to keep up on the options out there. How long has VEPTR been

around are there adults who still have it in them?

________________________________

From: infantile scoliosis treatment

[mailto:infantile scoliosis treatment ] On Behalf Of Tracey

Sent: Wednesday, March 07, 2007 9:52 AM

infantile scoliosis treatment

Subject: Re: Staples as tx for scoliosis

I think after reading some of the articles I found on stapling, it

sounds as if it is being used more in the adolescent population of

patients which of course casting is not an option for. However...I will

rephrase my earlier opinion...that decision would not be left up to Lexi

if she were still a minor living under my roof. I do understand that

most kids would not want to wear a brace, but if it were yielding

positive results then she would stay in that. Kids cann't begin to

understand possible setbacks or long term effects ( especially in an

unknown ) of surgery. With that said, if these children are not getting

results from a brace, then surgery is the next viable option...but why

not something like VEPTR? Can't that be used in adolescents as well?

As also emphasized...articles are being done on this stapling and

getting these docs some recognition amonsgt their peer groups. Are they

getting something back from the company making these devices ( the

staples ) in terms of money, help in funding the procedures and possible

studies? Casting doesn't seem like a lucrative venture, and sadly alot

of docs are in it to make money while helping hte patients as well.

Stapling in adolescents...ok fine if there are no other options like the

casting or bracing and if VEPTR isn't an option for them. I have to

strongly disagree though trying it in the younger toddlers and children

though...someone mentioned earlier...these are still GROWING spines. Who

knows what drives it all.

Again, this whole thread could start a firestorm of different opinions

which is fine, nothing wrong with a healthy debate, but I think we all

agree on early treatment which is the KEY!!

Tracey

Staples as tx for scoliosis

So my husband worked in a neighboring town and while having lunch he

picked up their local newspaper. He found a fairly long article

titled " Doctors work to straighten spines while they grow. " I tried

to find a link on-line for the article and have been unable to

locate it.

Briefly, Dr. D' of Shriners Hospital for Children in

Philadelphia indicate that staples as an alternative to wearing a

brace. She indicates this is a " godsend for the children who

otherwise would be wearing a brace for 10 years of their life. " She

has put staples in children as young as 3 years old. She does

indicate that treatment depends on the degree of the curve. The

article discusses growing rod in comparison to bracing and staples.

Dr. D' hopes to conduct a study on the staples in patients

later this year.

I found it interesting that casting was not even mentioned as a

treatment alternative.

Anyone have any thoughts on this treatment as an option?

If anyone is interested in this article, I'll be more than happy to

mail you a copy.

Aekta

[Guest guest]

Deshea,

I will try to email Texas and ask them your question re: idiopathic with small

curve and 5 yrs old. I frequently bug two of Dr. C's ladies down there. One is

keeper of the statistics and the other is just really nice and fields questions.

I'll see what they say.

Shellie

" Deshea L. " wrote:

tracey (i think we posted at the same time),

as always, well said, and i agree with your points whole heartedly! sadly, it

always seems to be about the $.

one advantage of stapling over veptr (theoretically) is that it is a one time

surgery versus expansions with the veptr. ????

along those lines, do you know what the requirements are for the veptr in the

idiopathic cases (i need help from the resident experts!)? since veptr is

supposed to help with lung function first and foremost does that mean curve size

is not as much of a concern. so if a parent gets a diagnosis of scoliosis for

their older (and i mean over 5 yrs old) child with a relatively small curve that

is not affecting lung function, veptr would not be a possibility or even

suggested by an ortho. right? so the parents are left with bracing (with not so

great results) or possibly stapling. i'm just trying to get a feel for what

options are out there for the older child (juvenile or adolescent).

one thing that popped into my head -- i believe that i did read somewhere that

the stapling is for curves that are on the smaller side (25 - 40? approximately)

and for a child that has a lot of growing. so not the older adolescent child.

this is off the top of my head so i might be slightly off on my numbers.

for what it's worth, i did ask dr. rivard when we were in montreal in jan

regarding stapling. he thinks it is too early to tell, but he would not

recommend it. i didn't understand his explanation entirely, but he doesn't

believe that the staples can address rotation. you are putting the staple on the

convex side of the curve where the growth plate is. this slows down the growth

on that side and allows the concave side to " catch up " . yes, height is slightly

reduced, but theoretically the spine can grow straight. dr. rivard wondered

about rotation and thought the staple would not address this issue. then he

mentioned something about where a staple would have to be to address that, but

it is nearly impossible or possibly dangerous place to have it so that is why

they are not doing it.

just more questions and not a lot of answers -- as usual :-)

deshea

---- Original message ----

>Date: Wed, 7 Mar 2007 09:51:38 -0600

>

>Subject: Re: Staples as tx for scoliosis

><infantile scoliosis treatment >

>

> I think after reading some of the articles I found

> on stapling, it sounds as if it is being used more

> in the adolescent population of patients which of

> course casting is not an option for. However...I

> will rephrase my earlier opinion...that decision

> would not be left up to Lexi if she were still a

> minor living under my roof. I do understand that

> most kids would not want to wear a brace, but if it

> were yielding positive results then she would stay

> in that. Kids cann't begin to understand possible

> setbacks or long term effects ( especially in an

> unknown ) of surgery. With that said, if these

> children are not getting results from a brace, then

> surgery is the next viable option...but why not

> something like VEPTR? Can't that be used in

> adolescents as well?

> As also emphasized...articles are being done

> on this stapling and getting these docs some

> recognition amonsgt their peer groups. Are they

> getting something back from the company making these

> devices ( the staples ) in terms of money, help in

> funding the procedures and possible studies? Casting

> doesn't seem like a lucrative venture, and sadly

> alot of docs are in it to make money while helping

> hte patients as well. Stapling in adolescents...ok

> fine if there are no other options like the casting

> or bracing and if VEPTR isn't an option for them. I

> have to strongly disagree though trying it in the

> younger toddlers and children though...someone

> mentioned earlier...these are still GROWING spines.

> Who knows what drives it all.

> Again, this whole thread could start a firestorm of

> different opinions which is fine, nothing wrong with

> a healthy debate, but I think we all agree on early

> treatment which is the KEY!!

>

> Tracey

> Staples as tx for

> scoliosis

>

> So my husband worked in a neighboring town and while

> having lunch he

> picked up their local newspaper. He found a fairly

> long article

> titled " Doctors work to straighten spines while they

> grow. " I tried

> to find a link on-line for the article and have been

> unable to

> locate it.

>

> Briefly, Dr. D' of Shriners Hospital for

> Children in

> Philadelphia indicate that staples as an alternative

> to wearing a

> brace. She indicates this is a " godsend for the

> children who

> otherwise would be wearing a brace for 10 years of

> their life. " She

> has put staples in children as young as 3 years old.

> She does

> indicate that treatment depends on the degree of the

> curve. The

> article discusses growing rod in comparison to

> bracing and staples.

> Dr. D' hopes to conduct a study on the staples

> in patients

> later this year.

>

> I found it interesting that casting was not even

> mentioned as a

> treatment alternative.

>

> Anyone have any thoughts on this treatment as an

> option?

>

> If anyone is interested in this article, I'll be

> more than happy to

> mail you a copy.

>

> Aekta

>

> [Non-text portions of this message have been

> removed]

>

> Send instant messages to your online friends

> http://au.messenger.

>

> [Non-text portions of this message have been

> removed]

>

> ---------------------------------

> TV dinner still cooling?

> Check out " Tonight's Picks " on TV.

>

> [Non-text portions of this message have been

> removed]

>

> Send instant messages to your online friends

> http://au.messenger.

>

> [Non-text portions of this message have been

> removed]

>

> ---------------------------------

> The fish are biting.

> Get more visitors on your site using Search

> Marketing.

>

> [Non-text portions of this message have been

> removed]

>

> [Non-text portions of this message have been

> removed]

>

>

---------------------------------

Don't pick lemons.

See all the new 2007 cars at Autos.

[Guest guest]

Hey ,

I meant all of us on the soap box comment. I carry mine wherever I go. It

took me a long time to have the guts, but now I'm ready to tell anyone and

everyone. Soap boxes are a good thing.

Shellie :0) Colon zero Close parentheses.

monique garcia wrote:

Hi Shellie, are you referring to me being on a soap box? If you are,

you are absolutely correct! And proud of it!!! . (Not sure how to do those

smily faces things, I did pretty well improvising though!!!)

Regarding your post, I also cannot understand why casting is not used everywhere

considering the results Shriners are getting. Shouldn't this be seen as a

medical breakthrough. (The answer is of course YES)

It's appalling! (But I won't go on about it)

Love

Shellie Grant wrote:

Have soap box, will travel!!!!!!!!!!!! :0)

Love ya ladies!

Shellie

monique garcia wrote:

I'd like to second what Tracey has said. I would also advocate casting over

surgery, if it is in fact viable to do so! This is not to say I am not a strong

advocate of surgery-I am! wouldn't be here today without his MAJOR open

heart surgeries, plus numberous other smaller sugeries.

I too would like to get a copy of that paper. I'd still be inclined to try a

HALO and a VEPTR HYBRID before stapling and touching that spine. (Again, Tracey,

we are on the same wave length here.) Once all else fails, I would be happy to

resort to what else can be offered for my child! Everyone has to make their own

informed choices and we all do the best with the knowledge we have at the

time!!! (I had in a completely useless brace for 2 years!)

Casting, although non surgical, offers childrens something no surgery can-a

potential cure. I acknowledge and respect casting for more than what it appears.

Surgery is reveered because of it's ability to get results, and change an

otherwise disasterous situation into a better one. Surgery should be respected.

(and is) But what about casting? What are the results? To completely rid the

child of the deformity altogether if treated early!

Surely that is by far the BEST result of all, and a better option as it is non

invasive. Therefore, casting should be as respected, if not MORE than surgery,

because of the results and power it holds to CURE progressive infantile

scoliosis are second to none.

There would be so much less stapling, bracing for 10 years, and other surgical

intervention if children who were diagnosed with PROGRESSIVE INFANTILE SCOLIOSIS

were treated early and correctly.

Still, I'd like to see the article!

I've really said my piece today haven't I!!! I am passionate about it! Sorry!

Love

pthahn@...> wrote:

I have heard of that treatment. I don't know much about it...but I would leave

Lexi in a brace until the cows came home before I put any hardware of any kind

in her spine. Like I said though..I have not heard the details on this procedure

but a brace isn't hurting anything. In college we learned that any new tx, drug

...you have it takes at least 10 -15 years to get a really good study of any long

term effects once approved and put into the mass public. I'd like to see a link

to this article though if possible.

Tracey

Staples as tx for scoliosis

So my husband worked in a neighboring town and while having lunch he

picked up their local newspaper. He found a fairly long article

titled " Doctors work to straighten spines while they grow. " I tried

to find a link on-line for the article and have been unable to

locate it.

Briefly, Dr. D' of Shriners Hospital for Children in

Philadelphia indicate that staples as an alternative to wearing a

brace. She indicates this is a " godsend for the children who

otherwise would be wearing a brace for 10 years of their life. " She

has put staples in children as young as 3 years old. She does

indicate that treatment depends on the degree of the curve. The

article discusses growing rod in comparison to bracing and staples.

Dr. D' hopes to conduct a study on the staples in patients

later this year.

I found it interesting that casting was not even mentioned as a

treatment alternative.

Anyone have any thoughts on this treatment as an option?

If anyone is interested in this article, I'll be more than happy to

mail you a copy.

Aekta

[Guest guest]

Hi all,

Deshea - you did a great job explaining your thoughts

and clarifying things. I agree with you. I know

everyone realizes that surgery of any kind is huge - a

major decision that should never be taken lightly.

That being said, technology in the orthopedic world is

advancing more and faster than ever. For decades, the

only option young children had was wait-and-see, then

fusion. Growing rods have been done, sporatically,

for 40+ years, with no advance in the techniques or

technology associated. Now, we have so many more

options. Because we have so much more knowledge, kids

are being diagnosed earlier than ever. It used to be

that kids with uneven shoulders/hips or a bump on

their back was told to sit up - have better posture.

No one acknowledged that their spine may not be

straight.

I had an interesting conversation with our ortho last

week. He confirmed (via a study done by Drs. Akbarnia

and who are growing rod advocates) that

fusion in small children is NOT the best option.

These docs did a study on three groups of kids. Group

1 children had single growth rod placement. Group 2

children had dual rod placement. Group 3 had fusion

with permanent instrumentation. By far, group 3 had

the worst outcome. These kids had more problems with

lung function, spine stability, etc. We talked about

this because Braydon is one of those early fusion

patients (fused with no instrumentation at 11months

old). His trunk/torso is at least 4 inches shorter

than it should be. His lungs are compromised because

of the fusion. Had the VEPTR procedure been perfected

when he was an infant, he wouldn't have had any

fusion.

Also, remember that the VEPTR procedure is not for

everyone. VEPTR used to be coined a " last resort "

option for many kids. It isn't that severe now, but

still very serious stuff when deciding surgical

intervention of your child's spine/torso.

Each of the new technologies has its time and place.

Stapling is for kids who are pre-teens still growing

with a specific type of IDIOPATHIC curve. The bone

structure MUST be healthy to qualify for stapling.

They are also patients who don't adjust to bracing.

Our ortho (a VEPTR training surgeon) is not sold on

stapling because of several reasons that he didn't

share with me.

Joining the soapbox brigade... LOL

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/

________________________________________________________________________________\

____

Looking for earth-friendly autos?

Browse Top Cars by " Green Rating " at Autos' Green Center.

http://autos./green_center/

[Guest guest]

Shellie again!!

It's hard to debate this online!! I wish we could all sit in a room together

and just talk. I don't know the exact criteria for Veptr, but I will find out.

I imagine some of it is case by case since each child is different. I would

love to follow the research on stapling and see what they do with it over the

next few years. I can see where adolescents would use it as an option. I guess

what set me off on this whole thing was a 3 year old getting them. Is there a

specific article on that? I would love to read it. Even with a low curve, at

three years old, if they weren't sure the procedure would hold, I would want

more options. The curve must be progressive, because bracing is not being used

in this case. If they expect the curve to progress, and the possibility is

there that the staples would not hold it, then I like the Veptr because you have

options. Yes expansions are 1-2 a year, but not manditory. They are based on

the child's needs. If the staples do

hold, then that child could be more physically active than a kid with Veptrs

because gymnastics are a definite no.

See what a tangled mess we parents have to navigate? See why it is so

important to know what is out there and make the best infomed choice possible?

I don't think most people appreciate what we have all had to go through.

Love you guys. I'm gonna be quiet now. All this is making me tired! :0)

Gonna go hang out with Mo. No nurse today. I get to be the nurse tomorrow and

Friday. We will be free by Tues. if we don't get bumped again. :0(

Shellie

" Deshea L. " wrote:

tracey (i think we posted at the same time),

as always, well said, and i agree with your points whole heartedly! sadly, it

always seems to be about the $.

one advantage of stapling over veptr (theoretically) is that it is a one time

surgery versus expansions with the veptr. ????

along those lines, do you know what the requirements are for the veptr in the

idiopathic cases (i need help from the resident experts!)? since veptr is

supposed to help with lung function first and foremost does that mean curve size

is not as much of a concern. so if a parent gets a diagnosis of scoliosis for

their older (and i mean over 5 yrs old) child with a relatively small curve that

is not affecting lung function, veptr would not be a possibility or even

suggested by an ortho. right? so the parents are left with bracing (with not so

great results) or possibly stapling. i'm just trying to get a feel for what

options are out there for the older child (juvenile or adolescent).

one thing that popped into my head -- i believe that i did read somewhere that

the stapling is for curves that are on the smaller side (25 - 40? approximately)

and for a child that has a lot of growing. so not the older adolescent child.

this is off the top of my head so i might be slightly off on my numbers.

for what it's worth, i did ask dr. rivard when we were in montreal in jan

regarding stapling. he thinks it is too early to tell, but he would not

recommend it. i didn't understand his explanation entirely, but he doesn't

believe that the staples can address rotation. you are putting the staple on the

convex side of the curve where the growth plate is. this slows down the growth

on that side and allows the concave side to " catch up " . yes, height is slightly

reduced, but theoretically the spine can grow straight. dr. rivard wondered

about rotation and thought the staple would not address this issue. then he

mentioned something about where a staple would have to be to address that, but

it is nearly impossible or possibly dangerous place to have it so that is why

they are not doing it.

just more questions and not a lot of answers -- as usual :-)

deshea

---- Original message ----

>Date: Wed, 7 Mar 2007 09:51:38 -0600

>

>Subject: Re: Staples as tx for scoliosis

><infantile scoliosis treatment >

>

> I think after reading some of the articles I found

> on stapling, it sounds as if it is being used more

> in the adolescent population of patients which of

> course casting is not an option for. However...I

> will rephrase my earlier opinion...that decision

> would not be left up to Lexi if she were still a

> minor living under my roof. I do understand that

> most kids would not want to wear a brace, but if it

> were yielding positive results then she would stay

> in that. Kids cann't begin to understand possible

> setbacks or long term effects ( especially in an

> unknown ) of surgery. With that said, if these

> children are not getting results from a brace, then

> surgery is the next viable option...but why not

> something like VEPTR? Can't that be used in

> adolescents as well?

> As also emphasized...articles are being done

> on this stapling and getting these docs some

> recognition amonsgt their peer groups. Are they

> getting something back from the company making these

> devices ( the staples ) in terms of money, help in

> funding the procedures and possible studies? Casting

> doesn't seem like a lucrative venture, and sadly

> alot of docs are in it to make money while helping

> hte patients as well. Stapling in adolescents...ok

> fine if there are no other options like the casting

> or bracing and if VEPTR isn't an option for them. I

> have to strongly disagree though trying it in the

> younger toddlers and children though...someone

> mentioned earlier...these are still GROWING spines.

> Who knows what drives it all.

> Again, this whole thread could start a firestorm of

> different opinions which is fine, nothing wrong with

> a healthy debate, but I think we all agree on early

> treatment which is the KEY!!

>

> Tracey

> Staples as tx for

> scoliosis

>

> So my husband worked in a neighboring town and while

> having lunch he

> picked up their local newspaper. He found a fairly

> long article

> titled " Doctors work to straighten spines while they

> grow. " I tried

> to find a link on-line for the article and have been

> unable to

> locate it.

>

> Briefly, Dr. D' of Shriners Hospital for

> Children in

> Philadelphia indicate that staples as an alternative

> to wearing a

> brace. She indicates this is a " godsend for the

> children who

> otherwise would be wearing a brace for 10 years of

> their life. " She

> has put staples in children as young as 3 years old.

> She does

> indicate that treatment depends on the degree of the

> curve. The

> article discusses growing rod in comparison to

> bracing and staples.

> Dr. D' hopes to conduct a study on the staples

> in patients

> later this year.

>

> I found it interesting that casting was not even

> mentioned as a

> treatment alternative.

>

> Anyone have any thoughts on this treatment as an

> option?

>

> If anyone is interested in this article, I'll be

> more than happy to

> mail you a copy.

>

> Aekta

>

> [Non-text portions of this message have been

> removed]

>

> Send instant messages to your online friends

> http://au.messenger.

>

> [Non-text portions of this message have been

> removed]

>

> ---------------------------------

> TV dinner still cooling?

> Check out " Tonight's Picks " on TV.

>

> [Non-text portions of this message have been

> removed]

>

> Send instant messages to your online friends

> http://au.messenger.

>

> [Non-text portions of this message have been

> removed]

>

> ---------------------------------

> The fish are biting.

> Get more visitors on your site using Search

> Marketing.

>

> [Non-text portions of this message have been

> removed]

>

> [Non-text portions of this message have been

> removed]

>

>

---------------------------------

The fish are biting.

Get more visitors on your site using Search Marketing.

[Guest guest]

Love you Carmell!! You always say things so well. I wish both Mo and Braydon

could have skipped the whole fusion thing. Glad to see some research finally

showing it's not always a good idea to start messing with young spines. Hope

you guys are doing well.

Shellie

Carmell Burns wrote:

Hi all,

Deshea - you did a great job explaining your thoughts

and clarifying things. I agree with you. I know

everyone realizes that surgery of any kind is huge - a

major decision that should never be taken lightly.

That being said, technology in the orthopedic world is

advancing more and faster than ever. For decades, the

only option young children had was wait-and-see, then

fusion. Growing rods have been done, sporatically,

for 40+ years, with no advance in the techniques or

technology associated. Now, we have so many more

options. Because we have so much more knowledge, kids

are being diagnosed earlier than ever. It used to be

that kids with uneven shoulders/hips or a bump on

their back was told to sit up - have better posture.

No one acknowledged that their spine may not be

straight.

I had an interesting conversation with our ortho last

week. He confirmed (via a study done by Drs. Akbarnia

and who are growing rod advocates) that

fusion in small children is NOT the best option.

These docs did a study on three groups of kids. Group

1 children had single growth rod placement. Group 2

children had dual rod placement. Group 3 had fusion

with permanent instrumentation. By far, group 3 had

the worst outcome. These kids had more problems with

lung function, spine stability, etc. We talked about

this because Braydon is one of those early fusion

patients (fused with no instrumentation at 11months

old). His trunk/torso is at least 4 inches shorter

than it should be. His lungs are compromised because

of the fusion. Had the VEPTR procedure been perfected

when he was an infant, he wouldn't have had any

fusion.

Also, remember that the VEPTR procedure is not for

everyone. VEPTR used to be coined a " last resort "

option for many kids. It isn't that severe now, but

still very serious stuff when deciding surgical

intervention of your child's spine/torso.

Each of the new technologies has its time and place.

Stapling is for kids who are pre-teens still growing

with a specific type of IDIOPATHIC curve. The bone

structure MUST be healthy to qualify for stapling.

They are also patients who don't adjust to bracing.

Our ortho (a VEPTR training surgeon) is not sold on

stapling because of several reasons that he didn't

share with me.

Joining the soapbox brigade... LOL

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/

__________________________________________________________

Looking for earth-friendly autos?

Browse Top Cars by " Green Rating " at Autos' Green Center.

http://autos./green_center/

---------------------------------

Looking for earth-friendly autos?

Browse Top Cars by " Green Rating " at Autos' Green Center.

[Guest guest]

Hi ,

<<...but what makes it a better option than stapling

other than the proximity to the spine?>>

Remember that kids who need VEPTR tend to be kids who

have reduced lung function due to chestwall

deformities or have severe scoliosis that it is

intefering with quality of life. Besides proximity to

the spine, the design of the VEPTR gives the child a

circumferential (is that a word?) or volume

improvement with each expansion, in addition to

vertical height. The volume is the key to keeping

these kids healthy.

<<Can a kid with VEPTR do everything a kid without

hardware can do- like summersaults, back bends, or is

it just growing rods that really constrict the

movement?>>

My Braydon has been a VEPTR patient for more than 5.5

years. He is VERY active. He can do somersaults, but

very awkwardly. His back is rigid from the two VEPTR

rods, and from the fusion he had as an infant. He

snowboards, golfs, plays tennis, etc. His ONLY

physical restriction is no full-contact sport like

football. If you SAW Braydon on the street, you would

never guess he's a VEPTR kid. He LOOKS like every

other annoying pre-teen boy, just a little smaller in

size.

<<...but I keep reading emails about the VEPTR kids

hardware breaking and having to go through more

surgeries which doesn't sound so great to me.>>

Braydon has had his VEPTRs for 5.5 years. He has

never had a problem with breakage. His body has more

than accepted the foreign material by having plenty of

bone growth at the attachment sites to keep it strong.

Braydon's only minor complication is happening right

now - the rib-to-rib device (which is not used very

often anymore) has migrated through the bottom ribs

that its attached to. Technically its being held in

place by scar tissue, but will need to be re-seated

during the next surgery (May 31 - Braydon's 12th

birthday).

Having back surgery every 6-8 months is not my idea of

fun either, however, choosing the lesser of many

evils, this is the best option for us. Braydon's

quality of life would not be what it is today if we

didn't do this VEPTR. He has an amazing attitude (its

always harder on the parents). He actually enjoys

going to the hospital because he's never been

critically or chronically ill. He's just been there

for " repair " work. He gets lots of attention. His

uniqueness (like all our kids) draws people to him.

If you have to choose between having an imbalanced

spine that is crushing his lungs, and having

out-patient surgery every 6 months, you'd choose

surgery too, probably.

<<How long has VEPTR been around are there adults who

still have it in them?>>

Braydon had his VEPTR surgery in Aug 2001. He was the

137th patient in the world to have this done. It is

now FDA approved (HDE approval) which means other

hospitals are now doing this. There have been about

400-500 total patients to have VEPTR so far. Again,

the kids who need this are rare. The original

patients are still in their teens.

HTH

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/

________________________________________________________________________________\

____

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[Guest guest]

Aekta,

What town did your husband see that article in? And the name of the

newspaper? I would like to see this article too. Thx Betty

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9:41 AM

[Guest guest]

The VEPTR is NOT for every child either. There is a long list of criteria that

must be met in order to receive it, and since it just received FDA Approval in

September 2004, it is still considered a new treatment as well even though it

has been used for almost 13 years. (10 of those in the studies for the FDA

approvals)

Yes, of course EARLY treatment is best, but when you have children who get

juvenile or idiopathic scoliosis as a teen, casting is probably not going to be

an option for these kids. Stapling may very well have its place, but I, too,

would want to see more of the studies and the outcomes. And yes, they may have

done this procedure on a 3 year old because it may have been their last hope. We

don't know what the child's history was/is. The VEPTR came about because of

someones debilitating curve. So in a sense it was that child's last hope too.

Just remember the old axiom: Never say Never! (I personally thought I would

never give my child medication for ADHD, now, I can't imagine going back to life

without him having them, and neither can he!)

Tracey wrote:

I think after reading some of the articles I found on stapling, it sounds as

if it is being used more in the adolescent population of patients which of

course casting is not an option for. However...I will rephrase my earlier

opinion...that decision would not be left up to Lexi if she were still a minor

living under my roof. I do understand that most kids would not want to wear a

brace, but if it were yielding positive results then she would stay in that.

Kids cann't begin to understand possible setbacks or long term effects (

especially in an unknown ) of surgery. With that said, if these children are not

getting results from a brace, then surgery is the next viable option...but why

not something like VEPTR? Can't that be used in adolescents as well?

As also emphasized...articles are being done on this stapling and getting

these docs some recognition amonsgt their peer groups. Are they getting

something back from the company making these devices ( the staples ) in terms of

money, help in funding the procedures and possible studies? Casting doesn't seem

like a lucrative venture, and sadly alot of docs are in it to make money while

helping hte patients as well. Stapling in adolescents...ok fine if there are no

other options like the casting or bracing and if VEPTR isn't an option for them.

I have to strongly disagree though trying it in the younger toddlers and

children though...someone mentioned earlier...these are still GROWING spines.

Who knows what drives it all.

Again, this whole thread could start a firestorm of different opinions which is

fine, nothing wrong with a healthy debate, but I think we all agree on early

treatment which is the KEY!!

Tracey

Staples as tx for scoliosis

So my husband worked in a neighboring town and while having lunch he

picked up their local newspaper. He found a fairly long article

titled " Doctors work to straighten spines while they grow. " I tried

to find a link on-line for the article and have been unable to

locate it.

Briefly, Dr. D' of Shriners Hospital for Children in

Philadelphia indicate that staples as an alternative to wearing a

brace. She indicates this is a " godsend for the children who

otherwise would be wearing a brace for 10 years of their life. " She

has put staples in children as young as 3 years old. She does

indicate that treatment depends on the degree of the curve. The

article discusses growing rod in comparison to bracing and staples.

Dr. D' hopes to conduct a study on the staples in patients

later this year.

I found it interesting that casting was not even mentioned as a

treatment alternative.

Anyone have any thoughts on this treatment as an option?

If anyone is interested in this article, I'll be more than happy to

mail you a copy.

Aekta

[Guest guest]

Very informative, thanks for all of the info. Our daughter has never

curved enough to have impaired lung function (thank God) but her muscles

can't seem to hold her in place without brace on, once we start

" weaning " off the brace her curve started up again and we had to cast

again. Hopefully it won't happen again, but I always wonder at what age

do they stop casting? Does anybody know?

E

________________________________

From: infantile scoliosis treatment

[mailto:infantile scoliosis treatment ] On Behalf Of Carmell Burns

Sent: Wednesday, March 07, 2007 12:45 PM

infantile scoliosis treatment

Subject: RE: Staples as tx for scoliosis

Hi ,

<<...but what makes it a better option than stapling

other than the proximity to the spine?>>

Remember that kids who need VEPTR tend to be kids who

have reduced lung function due to chestwall

deformities or have severe scoliosis that it is

intefering with quality of life. Besides proximity to

the spine, the design of the VEPTR gives the child a

circumferential (is that a word?) or volume

improvement with each expansion, in addition to

vertical height. The volume is the key to keeping

these kids healthy.

<<Can a kid with VEPTR do everything a kid without

hardware can do- like summersaults, back bends, or is

it just growing rods that really constrict the

movement?>>

My Braydon has been a VEPTR patient for more than 5.5

years. He is VERY active. He can do somersaults, but

very awkwardly. His back is rigid from the two VEPTR

rods, and from the fusion he had as an infant. He

snowboards, golfs, plays tennis, etc. His ONLY

physical restriction is no full-contact sport like

football. If you SAW Braydon on the street, you would

never guess he's a VEPTR kid. He LOOKS like every

other annoying pre-teen boy, just a little smaller in

size.

<<...but I keep reading emails about the VEPTR kids

hardware breaking and having to go through more

surgeries which doesn't sound so great to me.>>

Braydon has had his VEPTRs for 5.5 years. He has

never had a problem with breakage. His body has more

than accepted the foreign material by having plenty of

bone growth at the attachment sites to keep it strong.

Braydon's only minor complication is happening right

now - the rib-to-rib device (which is not used very

often anymore) has migrated through the bottom ribs

that its attached to. Technically its being held in

place by scar tissue, but will need to be re-seated

during the next surgery (May 31 - Braydon's 12th

birthday).

Having back surgery every 6-8 months is not my idea of

fun either, however, choosing the lesser of many

evils, this is the best option for us. Braydon's

quality of life would not be what it is today if we

didn't do this VEPTR. He has an amazing attitude (its

always harder on the parents). He actually enjoys

going to the hospital because he's never been

critically or chronically ill. He's just been there

for " repair " work. He gets lots of attention. His

uniqueness (like all our kids) draws people to him.

If you have to choose between having an imbalanced

spine that is crushing his lungs, and having

out-patient surgery every 6 months, you'd choose

surgery too, probably.

<<How long has VEPTR been around are there adults who

still have it in them?>>

Braydon had his VEPTR surgery in Aug 2001. He was the

137th patient in the world to have this done. It is

now FDA approved (HDE approval) which means other

hospitals are now doing this. There have been about

400-500 total patients to have VEPTR so far. Again,

the kids who need this are rare. The original

patients are still in their teens.

HTH

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/

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

Congenital scoliosis support group

http://health./group/CongenitalScoliosisSupport/

<http://health./group/CongenitalScoliosisSupport/>

__________________________________________________________

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[Guest guest]

okay -- i think i found the article although it was in a san diego paper not

chicago area. maybe it got syndicated around the country? happy reading . . .

http://www.signonsandiego.com/news/health/20070305-1054-healthbeat-scoliosis.htm\

l

---- Original message ----

>Date: Wed, 07 Mar 2007 03:06:20 -0000

>

>Subject: Staples as tx for scoliosis

>infantile scoliosis treatment

>

> So my husband worked in a neighboring town and while

> having lunch he

> picked up their local newspaper. He found a fairly

> long article

> titled " Doctors work to straighten spines while they

> grow. " I tried

> to find a link on-line for the article and have been

> unable to

> locate it.

>

> Briefly, Dr. D' of Shriners Hospital for

> Children in

> Philadelphia indicate that staples as an alternative

> to wearing a

> brace. She indicates this is a " godsend for the

> children who

> otherwise would be wearing a brace for 10 years of

> their life. " She

> has put staples in children as young as 3 years old.

> She does

> indicate that treatment depends on the degree of the

> curve. The

> article discusses growing rod in comparison to

> bracing and staples.

> Dr. D' hopes to conduct a study on the staples

> in patients

> later this year.

>

> I found it interesting that casting was not even

> mentioned as a

> treatment alternative.

>

> Anyone have any thoughts on this treatment as an

> option?

>

> If anyone is interested in this article, I'll be

> more than happy to

> mail you a copy.

>

> Aekta

>

>