Re: Scoliosis Research Society

[Guest guest]

Suzy, that's priceless. I referred you to your own site. Color me

red. :^D

It's definately one of the best and most informative. You must have

been doing your search much earlier than mine, and thanks to people

like you it was an easy, fruitful search. Thank you for it.

I do agree that the SRS' failure to even mention flatback on their

site seems to betray their attitude toward the problem. They may

also shy away from it for fear of scaring away new scoliosis

patients. I know that can be a concern for some of us who use the

general scoliosis lists and forums.

It is scary, and for good reason.

Sharon in southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 fusion T5 to L4 w/ single Harrington rod

Flatback, congenital thoracolumbar kyphosis, L5-S1 degeneration, etc.

> The Scoliosis Research Society is the organization scoliosis docs

belong

> to and I believe a great source of shared information passed

between

> these orthopedics. They do have a component on their web site that

> lists scoliosis docs and has a blip about scoliosis management.

> I offer my web site to any of you who are new to the group or

haven't

> seen it.

> http://www.microconn.com/scoliosis/

> I have summarized much of the research I have read on surgically

treated

> scoliosis, especially those with old style Harrington rods pre

1985.

> There are links to dozens of professional medical articles that

support

> my thesis. I have information on Flatback, Harrington rods, spinal

> fusion, crack in fusion, failure of instrumentation, degeneration

of

> free vertebrae.

> Suzy Habibi

[Guest guest]

Sounds great. Here's who I plan on contacting.

http://www.srs.org/about/contact/

I'll post the response I get (assuming I get one.)

~Noah 4 1/2 years old9 months of casting in SLC; Currently on 2 years of bracing at 6* in braceAnd Mariella 15 months old - resolved Infantile Scoliosis

infantile scoliosis treatment From: heather@...Date: Tue, 20 Apr 2010 11:01:35 -0400Subject: Re: Scoliosis Research Society

PLEASE DO write a letter to the Director. I urge all parents on CAST todo the same. ISOP has tried to get them on board for many years......Irealize change takes time in medical world as they need proof....But, WEHAVE PROOF!!!!! Its time..... We must unify as parents to DEMANDproperly applied EDF w/ The Mehta Method be offered to every child thatneeds it. We do not live the a 3rd world country....ET is not a high techsurgical procedure....Its simply a series of specialized plaster castsapplied early. If every one us wrote a letter, it would be sure to makean impact. Come on gang, lets do it!!! Great plan !!HRH>> From time to time I Google "Infantile Scoliosis Treatment" just to see if> there's any new research/treatment options. I love evidence (that's just> how my mind works.) Anyway...I read something on the SRS site that> further emphasizes the need to continue our cause.>>>> On the bracing page...>>>> "It must be re-emphasized that the purpose of the brace is to slow the> inevitable progression of the curve, not to correct the curve.">>>> And then on the following pages> http://www.srs.org/patients/infantile/casting.php>>>> Casting in children under 2 years of age, where the goal is curing the> scoliosis, requires cast changes under anesthesia every 2-3 months> (minimum 5 casts) with the goal of achieving a straight spine. Despite the> extensive casting a brace will still be needed after the casting> treatment. Children over age 2 require cast changes every 3-4 months.> Older children demonstrating "recurrence" can be re-casted for four months> to re-correct the deformity before continuing with brace management.>> Few centers in North America use casting as a treatment method to correct> a curve. The casts must be applied under general anesthesia. However a> modified version of the treatment involving cast changes every three> months in children with a severe curve may improve the deformity> sufficiently to return to brace management and further delay the need for> surgery.>>>> How frustrating! Shouldn't the goal always be to cure the scoliosis and> achieve a straight spine?! And why are only a few centers doing this> treatment?! If the SRS acknowledges this - why aren't they doing more to> ensure that every member of their Society is trained and practicing this> treatment option?!>>>> I plan on writing the Exectutive Director of SRS a letter posing these> questions. To be continued...>>> ~> Noah 4 1/2 years old> 9 months of casting in SLC; Currently on 2 years of bracing at 6* in brace> And Mariella 15 months old - resolved Infantile Scoliosis>>>>> __________________________________________________________> Hotmail has tools for the New Busy. Search, chat and e-mail from your> inbox.> http://www.windowslive.com/campaign/thenewbusy?ocid=PID28326::T:WLMTAGL:ON:WL:en-US:WM_HMP:042010_1

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[Guest guest]

I will be sending them an email.

Jenn

mommy to cole, 2 years old, 5th cast form Rochester, 13 degrees out of cast down

from 47.

>

>

> From time to time I Google " Infantile Scoliosis Treatment " just to see if

there's any new research/treatment options. I love evidence (that's just how my

mind works.) Anyway...I read something on the SRS site that further emphasizes

the need to continue our cause.

>

>

>

> On the bracing page...

>

>

>

> " It must be re-emphasized that the purpose of the brace is to slow the

inevitable progression of the curve, not to correct the curve. "

>

>

>

> And then on the following pages

http://www.srs.org/patients/infantile/casting.php

>

>

>

> Casting in children under 2 years of age, where the goal is curing the

scoliosis, requires cast changes under anesthesia every 2-3 months (minimum 5

casts) with the goal of achieving a straight spine. Despite the extensive

casting a brace will still be needed after the casting treatment. Children over

age 2 require cast changes every 3-4 months. Older children demonstrating

" recurrence " can be re-casted for four months to re-correct the deformity before

continuing with brace management.

>

> Few centers in North America use casting as a treatment method to correct a

curve. The casts must be applied under general anesthesia. However a modified

version of the treatment involving cast changes every three months in children

with a severe curve may improve the deformity sufficiently to return to brace

management and further delay the need for surgery.

>

>

>

> How frustrating! Shouldn't the goal always be to cure the scoliosis and

achieve a straight spine?! And why are only a few centers doing this

treatment?! If the SRS acknowledges this - why aren't they doing more to ensure

that every member of their Society is trained and practicing this treatment

option?!

>

>

>

> I plan on writing the Exectutive Director of SRS a letter posing these

questions. To be continued...

>

>

> ~

> Noah 4 1/2 years old

> 9 months of casting in SLC; Currently on 2 years of bracing at 6* in brace

> And Mariella 15 months old - resolved Infantile Scoliosis

>

>

>

>

> _________________________________________________________________

> Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox.

>

http://www.windowslive.com/campaign/thenewbusy?ocid=PID28326::T:WLMTAGL:ON:WL:en\

-US:WM_HMP:042010_1

>

[Guest guest]

I will be sending an email letter, too, thanks, ! Heidi, Bexon's Mommy, (2 and a half years old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25 in cast)From: genericallyloud <jennifer.leggett@...>infantile scoliosis treatment Sent: Tue, April 20, 2010 10:27:39

AMSubject: Re: Scoliosis Research Society

I will be sending them an email.

Jenn

mommy to cole, 2 years old, 5th cast form Rochester, 13 degrees out of cast down from 47.

>

>

> From time to time I Google "Infantile Scoliosis Treatment" just to see if there's any new research/treatment options. I love evidence (that's just how my mind works.) Anyway...I read something on the SRS site that further emphasizes the need to continue our cause.

>

>

>

> On the bracing page...

>

>

>

> "It must be re-emphasized that the purpose of the brace is to slow the inevitable progression of the curve, not to correct the curve."

>

>

>

> And then on the following pages http://www.srs. org/patients/ infantile/ casting.php

>

>

>

> Casting in children under 2 years of age, where the goal is curing the scoliosis, requires cast changes under anesthesia every 2-3 months (minimum 5 casts) with the goal of achieving a straight spine. Despite the extensive casting a brace will still be needed after the casting treatment. Children over age 2 require cast changes every 3-4 months. Older children demonstrating "recurrence" can be re-casted for four months to re-correct the deformity before continuing with brace management.

>

> Few centers in North America use casting as a treatment method to correct a curve. The casts must be applied under general anesthesia. However a modified version of the treatment involving cast changes every three months in children with a severe curve may improve the deformity sufficiently to return to brace management and further delay the need for surgery.

>

>

>

> How frustrating! Shouldn't the goal always be to cure the scoliosis and achieve a straight spine?! And why are only a few centers doing this treatment?! If the SRS acknowledges this - why aren't they doing more to ensure that every member of their Society is trained and practicing this treatment option?!

>

>

>

> I plan on writing the Exectutive Director of SRS a letter posing these questions. To be continued...

>

>

> ~

> Noah 4 1/2 years old

> 9 months of casting in SLC; Currently on 2 years of bracing at 6* in brace

> And Mariella 15 months old - resolved Infantile Scoliosis

>

>

>

>

> ____________ _________ _________ _________ _________ _________ _

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>