RE: Not panicking.....but HELP!

[Guest guest]

Hi nna,

I don’t have the parental

experience, but I was a neurosurgical nurse and I’ve seen just a few of

these. I’ve assisted on some of the surgeries to correct it, and

while any surgery is scary for a parent, it is a fairly simple procedure.

Basically, your spinal cord and nerves are encased by the bones of your spine

with a protective cover around it. The cord goes from the base of your

brain all the way down to your butt, and it moves fairly freely in this

channel, sort of floating in spinal fluid. This allows us to bend and

stretch without ripping the nerves from their foundation. Near the butt

end of your spinal cord, it tapers down like a horsetail. In fact, they

call this section of the cord the Cauda equina. Within this area is the

filum terminale. The filum terminale

is like a thin elastic band; about 8 inches long, and extends from the bottom

of your spinal cord to the tip of your tailbone.

The filum terminale works as a

stretchy anchor for the spinal cord. For people with normal anatomy, the

filum stretches when they bend over to allow the spinal cord to move up in the

spinal column and then goes back to normal length when the person straightens

up and gently pulls the spinal cord back to its normal position.

When the filum is fat-filled, fibrous and

tight, it will not allow the spinal cord to move up and down within the spinal

column, and so the spinal cord and the nerves end up being stretched instead of

the filum. In some people, this causes nerve damage. In patients

with a thickened filum, the filum is shorter or lower-lying than normal and is

thickened with fatty or fibrous tissue. The abnormality causes the filum

to become relatively inelastic (a bit like a rope or cord, rather than an

elastic band) and the spinal cord can become tethered. The usual surgical

procedure is to locate the defective filum terminale and cut it, thus

untethering the spinal cord to float freely in it’s casing.

Here is some pictures and additional info

about it:

Fatty filum or thickened filum is a small, threadlike piece of

connective tissue that connects the lower end of the spinal cord to the

sacral end of the spinal canal. This is called the filum terminale. If

the filum is thickened and is shorter than normal, it is usually filled with

fat and it pulls down on the spinal cord, causing tethering. This

surgical procedure is usually the simplest of all untethering operations. A

single level of bone is removed in order to allow access to the tight and

thickened filum. The filum is easily identified and cut. The

filum has no neurological function so the procedure is unlikely to cause any

neurological damage.

Dinkins-Borkowski; Nolan(5)

nocf, Phoebe(3) Ds

& cf

Phoebe Updates CLICK HERE

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From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of Freddies

Mommy

Sent: Thursday, August 28, 2008 2:39 PM

To: Downsyndrome_Families ;

downsyndromeinfoexchange ; dsala ;

DSTNI

Subject: [DownSyndromeInfoExchange] Not panicking.....but HELP!

Background.....

Freddie started crawling up stairs last year. This was after having mastered

the stairs already (milestone). We got the pediatrician to refer Freddie to a

neurologist. The neurologist ordered a spine MRI. Freddie had it last week. The

Neurologist just called. Freddie has something called Fatty Filum :

http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijss/vol3n1/mri.xml

Anyone out there had any dealings with this? The doc said it's not specific to

kids/adults with DS. He has referred Freddie to a neurosurgeon. I understand

wht it is and how to treat it. I just want to hear parental experience if

possible.

Thanks

nna

Mommy to Freddie 6 yrs

Full Inclusion Kindy

The Will of God will never take you where the Grace of God will not protect

you.