Hannah 18 months being fitted for a TLSO brace

December 28, 2004

Hi everyone, I haven't been on for a long time. Hannah my daughter

is 18 months old and just had a check up and she measured a 60

degree curvature. My doctor said she should have a TLSO brace. She

got measured for one today and should get it in about 3 or 4 weeks.

Has anyone else gotten one of these braces and have they gotted any

good results from it? They want to stop the progression. She will

have to have an operation but they want to wait until she's at least

2 or more. She has congential scoliosis. Everything else is ok and

she does have kyphosis also.

Thank you in advance for your input and help

December 28, 2004

Hi again,

I understand that your ortho is suggesting bracing to

stabilize the spine, not correct it. Still, bracing

is ineffective in congenital cases. Statistics show

that regardless of compliance of wearing the brace,

the congenital malformations of the spine (her 2

underdeveloped vertebrae) can not be well-supported

with a brace. I'm not discouraging you from trying,

just sharing statistics and help you not be too

disappointed if the brace does not do what you hope.

Your description of what Dr. Hensinger recommends does

involve fusion. He will excize (remove) the parts of

the vertebrae that are causing the curve, place a

stabilizing rod on both sides of the spine, then fuse

the rod into place. The excision surgery is quite

risky - its very near the spinal cord. Fusion will

need to be done above and below the area he's working

in, meaning at least 4 vertebrae will be fused,

stopping the vertical growth potential. The bone will

grow in thickness, but the growth plates must be

removed for the fusion to become solid. I know you

trust your ortho. That is not at all in question. My

suggestion is to get another opinion. It is

ultimately you, the parents, decision on what the best

treatment is for your daughter. Fusion and rod

placement is permanent - you cannot UNDO a fusion.

Please don't think I'm trying to lecture you - I am

NOT. My Braydon has been on both sides of this fence

- he was fused at age 11 months old because of a

rapidly progressing congenital curve (75 degrees at

the time of fusion). He also has had VEPTR implant

surgery which has given him more benefits than we

could have hoped. There are risks for ANY surgery.

Surgery should NEVER be taken lightly. Hopefully my

comments are received in the manner intended - as a

learning tool, not at all a lecture or attacking your

ability to provide the best care possible for your

daughter, Hannah. I wish you the very best!

=====

Carmell

mom to Kara 18, idiopathic scoliosis, Blake 13, GERD and Braydon 9, VACTERL,

GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic

insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96),

missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion,

clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, bicuspid

AV, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc.

__________________________________________________

December 28, 2004

Thank you for your advice. I didn't take like you are lecturing me. I

take everything I can. I'm not really sure what he is going to do. He

didn't say he was going to remove the vertibraes at one point in time

one of the surgeons we saw said that. We've seen 3 of them. I know

that Dr. Hensinger had said that after her first major surgery she

will have to have one either every year or so until she stops growing.

I guess it depends on how fast she grows. I don't have all the info

yet. If this brace doesn't work what are your suggestions until she

is old enough for her surgery? You may have told me but forgive me

for asking again. There is so much I'm worried about.

Thank you again for your information

> Hi again,

>

> I understand that your ortho is suggesting bracing to

> stabilize the spine, not correct it. Still, bracing

> is ineffective in congenital cases. Statistics show

> that regardless of compliance of wearing the brace,

> the congenital malformations of the spine (her 2

> underdeveloped vertebrae) can not be well-supported

> with a brace. I'm not discouraging you from trying,

> just sharing statistics and help you not be too

> disappointed if the brace does not do what you hope.

>

> Your description of what Dr. Hensinger recommends does

> involve fusion. He will excize (remove) the parts of

> the vertebrae that are causing the curve, place a

> stabilizing rod on both sides of the spine, then fuse

> the rod into place. The excision surgery is quite

> risky - its very near the spinal cord. Fusion will

> need to be done above and below the area he's working

> in, meaning at least 4 vertebrae will be fused,

> stopping the vertical growth potential. The bone will

> grow in thickness, but the growth plates must be

> removed for the fusion to become solid. I know you

> trust your ortho. That is not at all in question. My

> suggestion is to get another opinion. It is

> ultimately you, the parents, decision on what the best

> treatment is for your daughter. Fusion and rod

> placement is permanent - you cannot UNDO a fusion.

> Please don't think I'm trying to lecture you - I am

> NOT. My Braydon has been on both sides of this fence

> - he was fused at age 11 months old because of a

> rapidly progressing congenital curve (75 degrees at

> the time of fusion). He also has had VEPTR implant

> surgery which has given him more benefits than we

> could have hoped. There are risks for ANY surgery.

> Surgery should NEVER be taken lightly. Hopefully my

> comments are received in the manner intended - as a

> learning tool, not at all a lecture or attacking your

> ability to provide the best care possible for your

> daughter, Hannah. I wish you the very best!

>

> =====

> Carmell

> mom to Kara 18, idiopathic scoliosis, Blake 13, GERD and Braydon 9,

VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant

8/01), thoracic insufficiency, rib anomalies, congenital scoliosis

(fusion surgery 5/96), missing coccyx, fatty filum/TC (released

4/99), anal stenosis, chronic constipation, horseshoe (cross-fused)

kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney

reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip

dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8

toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, bicuspid AV,

single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98),

etc.

>

> __________________________________________________

>

December 28, 2004