Re: there once was a woman.: Charnel

May 19, 2006

> >

> > Charnel,

> >

> > It is interesting that you say that eventually she may need her filum

> > to be cut as well. Our ns said that just snipping the lipoma strand

> > was the plan, however, if he notices that the filum is also attached

> > when he goes in there, he would snip that too (or take care of it).

> > The MRI does not show any involvement of the filum - but I guess you

> > can never be sure with just the MRI.

> >

> > Can you have a closed procedure if you have a laminectomy? Our ns said

> > that he would remove 1 lamina.

> >

> > I dont know if it can be fibrous tissue. The MRI showed that the

> > tissue inside is of the same contrast as that of other fat tissues.

> > Also, my daughter has a very small (almost like an insect bite) fatty

> > pad in her sacral area that is visible if you know where to look. That

> > is what prompted us to look into the matter.There seems to be no

> > connection between that external fat pad to the internal lipoma.

> > According to ns, there must have been a connection at some point of

> > the early fetus development.

> >

> > One general question about tight filum or fatty filum surgery - do

> > they just cut the filum such that there is no connection of the filum

> > to the end - ie, filum is just free floating without being attached to

> > something at the end? Where do they cut it - at the base of filum or

> > at the base of conus (at the start of filum?). Does my question make

> > any sense?

> >

> > This is all an effort for me to clearly understand the procedure that

> > my ns would do. The ns himself thinks there is no need to explain in

> > such detail to me - but if I dont know, I will keep wondering.

> >

> > Thanks, Abby.

> >

>

May 19, 2006

Charnel,

It seems that your guess was right on the money with respect to my

daughter's condition, and could very well be very similar to that of

your daughters. I talked to our neurosugeon yesterday to clarify the

exact procedure etc, and he said some interesting things.

He said that what he sees is a fibrous strand that could possibly be a

lipoma. He also said that it was very possible that this strand IS the

filum terminale, and due to unusual growth, it is stuck to the dura.

Or perhaps it is a fatty filum, that has excess fibrous material that

tethers to the conus..so, essentially, he feels that this could very

well be fatty filum situation. When he goes in there, if he finds

anything abnormal with the filum he will just snip that off too. Does

this make any sense to you? Is that what happened to you?

He also said that normal filum cannot be seen clearly on an MRI

(unless it is fatty or fibrous or abnormal). The incision will be

below the spinal cord, so there can be no retethering, but he said

that the filum cannot tether with the incision/scar tissue - it would

be like a nerve root tethering, and that does not happen. He said the

filum actually looks like a nerve root. He was very confident that

there will be no retethering. What are your thoughts?

The surgery is not endoscopic, but it will be microscopic

(microneurosurgery) with the external incision about 1 inch. They will

remove 1 lamina but not put it back (he says they dont put back lamina

in babies, and this will not cause any instability).

Since your condition seems to similar, I would love to hear your

thoughts, and prognosis.

Others are welcome to chime in as well.

Thanks much, Abby.

> >