Re: My 14yr old daughter has scoliosis

March 9, 2011

Hey im ben and have kyphoscoliosis and my pre op curves were 120 and 125

i'll give you the best advice i can

dont talk to your daughter about her back but keep an eye on her in case she

gets any pain etc

and only talk to her when she is comfortable with talking about her back

also when she goes for surgery help her through as much as possible

ben

On Wed, 09 Mar 2011 11:14 PST julieward12@... wrote:

>Hi came across this website and read a lot of info on here my 14yr old daughter

got diagnosed with scoliosis Jan 2010 with an S curvature she had an MRI scan in

may 2010 and had 60 degree angle in the lower spine and 50 degree angle in the

upper spine and was told she needed surgery including Harrington rods. My

daughter has been back tonthe hospital twice since may 2010 and has been given 5

different dates for surgery aug, nov 2010 April, may, June 2011 and being told

the consultant is taking on emergencies instead she is suffering from pains and

spasms in her back she is a little fighter and keeps her spirits up. Not sure if

this is normal to wait this long, her right shoulder is higher than the other

and she hides this by wearing baggy clothes and stands with a tilt. It's really

hard to see her like this and I tend to cry when I'm on my own as I do not no

how I can help her and when i mention her back she goes mad and dosnt want to

talk about it.

any info would be much appreciated thanks a worried mum julie.

>

March 9, 2011

Hi and welcome to the group. I want to make a few comments that may be

able to help you.

I would be extremely surprised if the surgeon your daughter is seeing plans to

use " Harrington Rods " . Some (and in some cases) many people use the term

" Harrington Rods " generically for all spinal instrumentation. Any reputable

surgeon stopped using them by 1984 due to the fact that they caused a condition

now known as " flatback syndrome " .

The instrumentation types used today are Texas ish Rite Hospital (TSRH)

Instrumentation and Cotrel-Dubousset (CD) Instrumentation (or generic versions

thereof). They include rods that are somewhat thinner than Harrington Rods, and

are therefore bent in such a way to maintain the normal lordosis and kyphosis

(front to back) curves of the spine (hence the term " flatback syndrome " ).

Furthermore, Harrington Rods only consisted of a hook at the top and a hook at

the bottom. The " newer " types have hooks and screws at multiple levels. These

differences explain why patients with Harrington Rods often were on total bed

rest in a full body cast for six or more months, and patients with the newer

instrumentation types are out of bed, walking two or three days post-op with or

without a (TLSO) brace. As a side note. Some of the " newest " versions of Texas

ish Rite Hospital (TSRH) and Cotrel-Dubousset (CD) Instrumentations are now

made out of titanium rather than stainless steel.

A long wait for a surgery date is NOT at all unusual. This is especially true

with the better known/best surgeons.

The following sites may provide you with additional information about scoliosis,

and what to expect with spinal fusion surgery. The also provide information

about local support groups:

Scoliosis Association -- http://www.scoliosis-assoc.org/

National Scoliosis Foundation -- http://www.scoliosis.org/

Scoliosis Association (UK) -- http://www.sauk.org.uk/

You said that whenever you raise the issue about your daughter's back with her

that she gets mad, and doesn't want to talk about it. It may help if she can

" talk " with others her age also going through the same thing. There are a few

such groups through " " . One such group is scoliosisteens

(scoliosisteens/).

There are a few others; however, this is the only one that appears to be

" membership required " .

Hope this helps!!

S.

My 14yr old daughter has scoliosis

Hi came across this website and read a lot of info on here my 14yr old daughter