Surgery for Tight Filum Terminale?

[Guest guest]

I have not seen much on this topic yet. My 5-yr-old son may have it (we are in

a wait-and-see mode after a visit to The Chiari Institute in October). For those

of you who havent heard that one yet, it is sometimes called " tethered spinal

cord " too - only its not the " classic " tethered cord. Its a condition where

some tissue at the base of the tailbone (away from the spinal cord itself) is

tethering the whole spinal column too tightly at that end. I think the tissue

(called " filum terminale " ) is left-over from fetal development and should have

gone away. But in this case, it remained - and it acts as an anchor or tether

of the whole cord. It apparently can be the reason for low-lying tonsils (that

are not necessarily Chiari) or Chiari, because the pulling at the lower end of

the spine causes a " pulling " at the upper end, causing the cerebellar tonsils at

the back of the brainstem to shift downward. In addition, my son's lumbar spine

appears too straight (does not have

the natural curve that it should), also pointing to this " tight filum

terminale " condition.

However a key indicator of this condition is bladder dysfunction. While my

son does still wet the bed every night, he has no other bladder problems. His

biggest problem is leg pains 4-8 times a week. And fine motor problems. They

think the leg pains are due to the tightly tethered cord, and the fine motor

problems are due to the shifted brainstem (low-lying cerebellar tonsils).

My question is: has anyone had the surgery for tight filum terminale WITHOUT

having had bladder issues, but HAVING the leg pains only? I'm just

curious... I have not seen much on this topic.

__________________________________________________

[Guest guest]

Kathy Z said the following on 12/30/2006 5:31 PM:

> I have not seen much on this topic yet. My 5-yr-old son may have it (we are

in a wait-and-see mode after a visit to The Chiari Institute in October). For

those of you who havent heard that one yet, it is sometimes called " tethered

spinal cord " too - only its not the " classic " tethered cord. Its a condition

where some tissue at the base of the tailbone (away from the spinal cord itself)

is tethering the whole spinal column too tightly at that end. I think the

tissue (called " filum terminale " ) is left-over from fetal development and should

have gone away. But in this case, it remained - and it acts as an anchor or

tether of the whole cord. It apparently can be the reason for low-lying

tonsils (that are not necessarily Chiari) or Chiari, because the pulling at the

lower end of the spine causes a " pulling " at the upper end, causing the

cerebellar tonsils at the back of the brainstem to shift downward. In addition,

my son's lumbar spine appears too straight (does not have

> the natural curve that it should), also pointing to this " tight filum

terminale " condition.

>

> However a key indicator of this condition is bladder dysfunction. While my

son does still wet the bed every night, he has no other bladder problems. His

biggest problem is leg pains 4-8 times a week. And fine motor problems. They

think the leg pains are due to the tightly tethered cord, and the fine motor

problems are due to the shifted brainstem (low-lying cerebellar tonsils).

>

> My question is: has anyone had the surgery for tight filum terminale

WITHOUT having had bladder issues, but HAVING the leg pains only? I'm just

curious... I have not seen much on this topic.

>

> __________________________________________________

>

A tight filum terminale must be tethered or it would not be tight, in a

logical sense.

If the bladder nerves are not affected then there would be no bladder

issues.

Same holds true for the leg pains, those nerves must be affected.

Those nerve roots are so close together that 'most' of us have those

issues and others.

I never had bladder issues until age 42.

Rick

[Guest guest]

I was dx tight filum terminale @ TCI last April. Feel free to email me

if you would like. I'm just learning too, but will share what I

can.Happy New Year everyone.

>

> Kathy Z said the following on 12/30/2006 5:31 PM:

> > I have not seen much on this topic yet. My 5-yr-old son may have it

(we are in a wait-and-see mode after a visit to The Chiari Institute in

October). For those of you who havent heard that one yet, it is

sometimes called " tethered spinal cord " too - only its not the " classic "

tethered cord. Its a condition where some tissue at the base of the

tailbone (away from the spinal cord itself) is tethering the whole

spinal column too tightly at that end. I think the tissue (called " filum

terminale " ) is left-over from fetal development and should have gone

away. But in this case, it remained - and it acts as an anchor or tether

of the whole cord. It apparently can be the reason for low-lying tonsils

(that are not necessarily Chiari) or Chiari, because the pulling at the

lower end of the spine causes a " pulling " at the upper end, causing the

cerebellar tonsils at the back of the brainstem to shift downward. In

addition, my son's lumbar spine appears too straight (does not have

> > the natural curve that it should), also pointing to this " tight

filum terminale " condition.

> >

> > However a key indicator of this condition is bladder dysfunction.

While my son does still wet the bed every night, he has no other bladder

problems. His biggest problem is leg pains 4-8 times a week. And fine

motor problems. They think the leg pains are due to the tightly tethered

cord, and the fine motor problems are due to the shifted brainstem

(low-lying cerebellar tonsils).

> >

> > My question is: has anyone had the surgery for tight filum terminale

WITHOUT having had bladder issues, but HAVING the leg pains only? I'm

just curious... I have not seen much on this topic.

> >

> > __________________________________________________

> >

> A tight filum terminale must be tethered or it would not be tight, in

a

> logical sense.

> If the bladder nerves are not affected then there would be no bladder

> issues.

> Same holds true for the leg pains, those nerves must be affected.

> Those nerve roots are so close together that 'most' of us have those

> issues and others.

> I never had bladder issues until age 42.

> Rick

>

[Guest guest]

>

> My question is: has anyone had the surgery for tight filum

terminale WITHOUT having had bladder issues, but HAVING the leg pains

only? I'm just curious... I have not seen much on this topic.

>

>

ABSOLUTELY! And preferably before any bladder issues appear (altho

the bedwetting could be linked, also may not be). My daughter's only

symptom was leg weakness. She was detethered last June. Some doctors

take more of a wait and see approach if there are no symptoms, but if

there are symptoms, such as your son seems to have, I think that

detethering is almost always recommended. Good luck.

Donna

Mom to , 8yo, OSD, split cord, detethered 6/06, short stature