Re: Scoliosis - Chiari - Tethered Cord

[Guest guest]

Again, sorry for the past due reply due to a long hiatus from responding.

While I see what you are saying......I think it is also a good idea to keep

in

mind that these 2 conditions, even when seen together. can be 2 separate

conditions, possibly needing 2 separate treatments (if both issues are

symptomatic,

either at the same time, or different times), as well. Infact after my first

Detethering (

which was deemed unnecessary by many) my Scoliosis got worse quite soon

afterwards,

thus leading me to have a Spinal Fusion sooner than what was expected.

Same with Chiari and Tethered Cord.......they can very well be 2 separate

conditions

seen together, but maybe 2 separate conditions not dependent upon one

another.

I believe there is some dispute on whether Tethered Cord is truly an NTD.

Even

if it is, there are still some cases of Tethered Cord that would not be an

NTD. In

saying that, though, Tethered Cord is commonly seen in a person with an NTD

(Spina Bifida),

but that doesn't make the Tethered Cord the NTD.

Brande

mymocha@...

> Scoliosis is common with TC - especially in children. In a person without

> TC, the cord would rise up as the child grows. But in a child with TC, the

> cord is stuck. The spinal column continues to grow just like it should,

> but

> since the cord is stuck and the bottom (tether) and top (brain) the spine

> cannot grow like normal and curves as length is added to compensate. Make

> sense? Its difficult for me to explain.

>

> As far as the chiari, often the TC release can fix the herniation, or at

> least reduce it to an asymptomatic level. It definately sounds like an

> untethering is in order. And I would definitely have that surgery before

> touching the chiari and then re-evaluate the herniation. From the sound of

> it, this should have been Dx much earlier - long before such a large curve

> set in. Her cord may be so tight that the tension from the tether is

> causing

> her chiari.

>

>

> as far as the cause of TC - it is a neural tube defect. It occurs before

> the

> 5th week of pregnancy, when the neural fold closes improperly. While they

> have not found a definite cause, they suspect is a combination of genetic,

> environmental and other factors. Taking enough folic acid can reduce the

> incidence of NTD by 70%. The problem is that most women start taking

> vitamin

> supplements once they get the positive pregnancy test. But the defect has

> already occured by the time most women discover they are pregennt. And if

> they find out at the 3 or 4th week, it is still unlikely that

> supplementation can raise the blood level high enough.

[Guest guest]

Brande,

I have to disagree. Looking at current research (including a Duke site) I

have read identifies TC as a " closed NTD " (even when it doesn't occur with

any form of SB). The only exception to that would be TC that did not

develop in utero (such as secondary to a spinal surgery or because of

trauma). But TC that developed in utero (regardless the presence of any form

of SB) is considered a " closed NTD. "

Jenn

>

>

>

> I believe there is some dispute on whether Tethered Cord is truly an NTD.

> Even

> if it is, there are still some cases of Tethered Cord that would not be an

> NTD. In

> saying that, though, Tethered Cord is commonly seen in a person with an NTD

>

> (Spina Bifida),

> but that doesn't make the Tethered Cord the NTD.

>

> Brande

> mymocha@...

>

[Guest guest]

That's what I've read also: And this question wasn't to diminish SB, but just to

make certain that I am describing my own dx. correctly - Lipomeningocele which

is a closed form of a NTD which led to recurrent tethered cord (only this way to

doctors). I say the dx because I'm still slightly tethered to the lipoma which

is intra and extra dural which is important for a doctor to know - I say NTD

closed form because unless the doctor sees patients with tethers, they don't

know what it is often and saying a closed form of an NTD helps them classify

which helps them see the picture and recurrent tether so they understand that

it's retether that is now causing the bulk of my problems.

Thanks Jenn -

Kathy

Re: Scoliosis - Chiari - Tethered Cord

Brande,

I have to disagree. Looking at current research (including a Duke site) I

have read identifies TC as a " closed NTD " (even when it doesn't occur with

any form of SB). The only exception to that would be TC that did not

develop in utero (such as secondary to a spinal surgery or because of

trauma). But TC that developed in utero (regardless the presence of any form

of SB) is considered a " closed NTD. "

Jenn

>

>

>

> I believe there is some dispute on whether Tethered Cord is truly an NTD.

> Even

> if it is, there are still some cases of Tethered Cord that would not be an

> NTD. In

> saying that, though, Tethered Cord is commonly seen in a person with an NTD

>

> (Spina Bifida),

> but that doesn't make the Tethered Cord the NTD.

>

> Brande

> mymocha@...

>