Re: Staples as tx for scoliosis

March 7, 2007

i found it on news as well dated march 5th -- AP medical news

---- Original message ----

>Date: Wed, 7 Mar 2007 16:21:53 -0500 (EST)

>

>Subject: Re: Staples as tx for scoliosis

>infantile scoliosis treatment

>

> 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

> >

>

March 7, 2007

Hi ,

<<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,...>>

When I mentioned that the VEPTR devices are being more

and more perfected and developed, this includes

helping kids just like yours. They have started doing

VEPTRs for kids who have connective tissue problems

(among other medical conditions) - those kids who's

spines have curves that are relentless. The lung

issue was the first and foremost reason for the design

of the device. Now, they are recognizing that many

children with unique spines (not necessarily chest

involvement) are benefitting from VEPTR. I will

continue to hope and pray with you that you won't need

to travel the VEPTR road (or any other surgical

intervention). However, if you do, you will be in

good company. I promise.

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/

________________________________________________________________________________\

____

TV dinner still cooling?

Check out " Tonight's Picks " on TV.

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March 7, 2007

And here I am jumping in too - finally LOL

Shellie, I so agree, wouldn't it be great to sit around together and

have this discussion?? I find it so hard to write exactly what I want

to 'say' in a forum - Well, of course Carmell always does a great

job - Hey Friend!

For those of y'awl (I'm pretending to be North American now can ya

tell?) that don't know - My little girl was braced unsuccessfully for

over 3 years, and casted by Dr D'Astous for over a year too (4 casts

in total) - As so many of you point out, each case is so very

diffrent - What works for one kiddo, just doesn't for another -

Casting worked for Siobhan in the short term - i.e while she was in a

properly made cast, her curves 'disappeared', and within hours of

cutting off the cast, they were back with a vengance! This ofcourse

is because of her Marfan Syndrome (connective tissue disorder).

Siobhan's had her VEPTR's for about 10 months now - Lung function was

never an issue for her, as her major curve is lumbar. As wonderful as

this VEPTR procedure has been, it was no walk in the park! But they

are literally acting as an 'internal brace', and it's all good!

I remember talking to Dr D'Astous a couple of years back, as I was

looking into stapling for Siobhan - I figured it sounded way less

invasive than VEPTR, and both surgeries did/do touch the spine - (not

always the pelvis). If I remember correctly, Dr D explained that it

wouldn't work for Siobhan, her curves were too progressive and she

had too much growing left to do (she was around 5 yrs old at that

time). He also mentioned it was still 'experimental'.

I'm kind of rambling here, Just thought I'd throw in my 2 cents!

Hugs to all

Jacki

>

> Hi ,

>

> <<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,...>>

>

> When I mentioned that the VEPTR devices are being more

> and more perfected and developed, this includes

> helping kids just like yours. They have started doing

> VEPTRs for kids who have connective tissue problems

> (among other medical conditions) - those kids who's

> spines have curves that are relentless. The lung

> issue was the first and foremost reason for the design

> of the device. Now, they are recognizing that many

> children with unique spines (not necessarily chest

> involvement) are benefitting from VEPTR. I will

> continue to hope and pray with you that you won't need

> to travel the VEPTR road (or any other surgical

> intervention). However, if you do, you will be in

> good company. I promise.

>

> 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/

>

______________________________________________________________________

______________

> TV dinner still cooling?

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

> http://tv./

>

March 7, 2007

Jumping in here to get your thoughts on our app with the ortho today...I'm

pretty sure this ties in to your discussion. My son is currently wearing a halo

and doing halo traction. We are 5 months in and discussed surgery today. I am

currently getting an appointment with San for May. We're trying to get

in sooner but not sure if I can,. Anyway, our Doc's surgery of choice is using

the growing rods in the same way as the VEPTR on one side however he is quite

convinced that on the other side, he'll need to do one rod down the spine

because of the spine rotation. The Spine rotation is causing his chest to sink

in on his left side. Apparently, rib to pelvis rod, will not correct rotation.

I was under the impression that this doc didn't perform the VEPTR surgery but

today he told me that he in fact does do it. Another point he made is that the

growing rod is much smaller in size then the VEPTR rod. My son has a connective

tissue disorder of some sort, we haven't been able to dx 100%. He is very very

very floppy and his muscles are very weak. He cannot walk or weight bear at all.

This is another factor in our Doctors decision. Thoughts?????

I have heard from all of you in the past and really cherish your info and

recommendations. Just to refresh your memory, my son is and I am

Connie...

Thanks,

Connie