Re: question on primary tethering at the conus

[Guest guest]

Hi Charnel,

I suspect something similar with . Not sure if it's re-tether (Wehby

said it was not re-tether), or if there is another tether not yet diagnosed. Or

something else with her Chiari or cord. It will be interesting to find out what

the tests at TCI reveal next month.

Also, we had my older son evaluated at Emanuel and we were told he does not have

tc. That is interesting they missed it with your children (since this is one of

Dr. W's specialties). We should probably take his disc with us when we go to

TCI.

question on primary tethering at the conus

We went to NY with the kids and it looks like Mackenzie our 7yr ols is

tethered. She has her filum cut and within her next growth she was

back to having symptoms again. The NSG here put my off saying that

filum terminale does not retether. I at this point am thinking she

has not retethered she just was not fully detethered in the first

place. Has anyone had filum tethering with secondary ligament

thethering at the conus level. Dr B is thinking this with her because

I had something close when he went in to detether me.

Charnel

Not Medical Advice. We Are Not Doctors.

Need help with the list? Email

kathy@...,michelle@..., rick@...

[Guest guest]

Hi Charnel

Yes I had TFT + adhesions, but they were both detethered at the same time

and so the potential problem of so-called retethering will not happen in my

case. I may retether for some other reason, but at least the nsg saw the

extra fibrous tissue during the surgery and did something about it then

Best wishes

Nina

Bristol, UK

--

> We went to NY with the kids and it looks like Mackenzie our 7yr ols is

> tethered. She has her filum cut and within her next growth she was

> back to having symptoms again. The NSG here put my off saying that

> filum terminale does not retether. I at this point am thinking she

> has not retethered she just was not fully detethered in the first

> place. Has anyone had filum tethering with secondary ligament

> thethering at the conus level. Dr B is thinking this with her because

> I had something close when he went in to detether me.

> Charnel

>

>

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

> kathy@...,michelle@..., rick@...

>

[Guest guest]

I don't understand why there are those out there that

think there is no chance of Retethering in regards to

Filum Terminale. You had Surgery to cut the Filum,

Surgery causes Scar Tissue..........which leads to the

possiblity of a Retether. Yes, I understand there is

a smaller chance of Retether with a Filum Terminale,

because it isn't as invasive, I've been told that many

times, I get it. But there is still a possiblity, even if

small.

If she wasn't completely Detethered, and it is now

causing her problems, if that's what's doing it, I

still think that would be considered a Retethering.

Sorry for the ramble, it just baffles me.

I would get a second Opinion for her if I were you.

Good luck. Hope she feels better soon.

Me

Nebraska, USA

mymocha@...

The NSG here put my off saying that

> filum terminale does not retether. I at this point am thinking she

> has not retethered she just was not fully detethered in the first

> place. Has anyone had filum tethering with secondary ligament

> thethering at the conus level.

[Guest guest]

Let me put this simply. The reason there is a lower chance of the

filume retethering is becuse it retracts from itself when cut.

Imagine a rubber band being cut in half. The ends snap away. The

chance of retethering with scar tissues is slim. It does happen. The

odds are less than 1:1500 surgeries. I do not consider it a retether

if the area she is still tethered in was not cut. The filum was

severes inches below the conus where the suspected tissue is. That

would be like saying a kid should be punished for what it's sibling

did. The tissues was not addressed in the first place. We did get a

second oppinion. It was that the filum does not retether easily and

there was tissue missed higher up. My question was given the rarity

if additional tethering with the tight filum has anyine else ever had

the additional tethering.

Charnel

>

> I don't understand why there are those out there that

> think there is no chance of Retethering in regards to

> Filum Terminale. You had Surgery to cut the Filum,

> Surgery causes Scar Tissue..........which leads to the

> possiblity of a Retether. Yes, I understand there is

> a smaller chance of Retether with a Filum Terminale,

> because it isn't as invasive, I've been told that many

> times, I get it. But there is still a possiblity, even if

> small.

>

> If she wasn't completely Detethered, and it is now

> causing her problems, if that's what's doing it, I

> still think that would be considered a Retethering.

>

> Sorry for the ramble, it just baffles me.

>

> I would get a second Opinion for her if I were you.

>

> Good luck. Hope she feels better soon.

>

> Me

> Nebraska, USA

> mymocha@...

>

>

>

> The NSG here put my off saying that

> > filum terminale does not retether. I at this point am thinking she

> > has not retethered she just was not fully detethered in the first

> > place. Has anyone had filum tethering with secondary ligament

> > thethering at the conus level.

>

[Guest guest]

So let me see if I have this straight, Charnel,

because this seems like an issue of semantics.

Charnel, you only consider it a retether when the

exact area/reason for the first tether is the reason

for the second tether? Is that correct?

I think most people consider any additional tethering

caused by scar tissue from a surgery a retether. I

never thought of it in terms of " gee, did the exact

same spot tether? " I was wondering why you would

think cutting the filum would have a lower risk for

retether because we all know that scar tissue is a

major cause of retethering, but if it's because the

filum itself wouldn't reattach itself, except maybe to

scar tissue, then I can see why you'd say that.

But Brande is right about the scar tissue raising the

risk of, to change the language, another tether.

--- charneloj wrote:

> Let me put this simply. The reason there is a lower

> chance of the

> filume retethering is becuse it retracts from itself

> when cut.

> Imagine a rubber band being cut in half. The ends

> snap away. The

> chance of retethering with scar tissues is slim. It

> does happen. The

> odds are less than 1:1500 surgeries. I do not

> consider it a retether

> if the area she is still tethered in was not cut.

> The filum was

> severes inches below the conus where the suspected

> tissue is. That

> would be like saying a kid should be punished for

> what it's sibling

> did. The tissues was not addressed in the first

> place. We did get a

> second oppinion. It was that the filum does not

> retether easily and

> there was tissue missed higher up. My question was

> given the rarity

> if additional tethering with the tight filum has

> anyine else ever had

> the additional tethering.

> Charnel

>

>

> >

> > I don't understand why there are those out there

> that

> > think there is no chance of Retethering in regards

> to

> > Filum Terminale. You had Surgery to cut the Filum,

> > Surgery causes Scar Tissue..........which leads to

> the

> > possiblity of a Retether. Yes, I understand there

> is

> > a smaller chance of Retether with a Filum

> Terminale,

> > because it isn't as invasive, I've been told that

> many

> > times, I get it. But there is still a possiblity,

> even if

> > small.

> >

> > If she wasn't completely Detethered, and it is now

> > causing her problems, if that's what's doing it, I

> > still think that would be considered a

> Retethering.

> >

> > Sorry for the ramble, it just baffles me.

> >

> > I would get a second Opinion for her if I were

> you.

> >

> > Good luck. Hope she feels better soon.

> >

> > Me

> > Nebraska, USA

> > mymocha@...

> >

> >

> >

> > The NSG here put my off saying that

> > > filum terminale does not retether. I at this

> point am thinking she

> > > has not retethered she just was not fully

> detethered in the first

> > > place. Has anyone had filum tethering with

> secondary ligament

> > > thethering at the conus level.

> >

>

>

>

>

>

__________________________________________________

[Guest guest]

,

Scar tissue is a major source of retethering when you have a type of

tethered cord where the cord is itself adheared to scar tissues or

origionally fibrous tissues as seen with spina bifida. Tight filum

does not usually have this issue as much beause the origional problem

is not of cord tethering in this manner unless, the is a lipoma

causing adhesion in which case it is called fatty filum (and those

cases do retether at rates closer to the spina bifida type of

tethering) The problem with uncomplicated cases of tight filum is not

one of adheasions but of the naturally occuring structure being

inelastic. You are talking about a piece of ligament that is

millimeteres thick. When it is cut the ends do not sit next to each

other to heal (and retether with scar tissue) but move avay from each

other as the tension is relaesed. This set of circumstances makes it

highly unlikely that a retether will occur. If it does it is not the

filum readhearing to itself but to another structure. I did not say

in my post that this never happens. I said the my daughter's NSG here

said that. I understand that it can rarely occur that is why we took

Mackenzie to NY for a second opinion. The point I was trying to make

was that I had a question as to secondary tethering not the likelyhood

as to Mackenzie being retethered. Her sacral nerves all appear to be

fine and there is no significant scar tissue but there is an issues at

the conus and possibly at the thorasic region throwing things off. I

just have not heard much about these fibrous adheasions being seen in

conjunction with tight filum and was curious if they are occuring or

are being recognised in more that just the chiari population that is

being detethered right now. Mackenzie does not have spina biffida and

I am trying to form an opinion as to the causative nature of them.

Right now I think it is related to the EDS in agreement with her Docs

in NY but I want to learn more. I am having difficulties finding case

study in this specific area.

I think the difference between retether and aditional tethering is

huge. First of all it changes the picture as to treatment and how we

would decide what to do for Mackenzie. With the additional tethering

I am much more open to persuing surgically because to this point she

has had no issues with internal scar tissue following her previous

surgeries. If she had I would be a LOT less likely to look at surgery

for her. Secondly it is necessary to be precise in our wording so as

to avoid confusion in the discussion at hand. If I was talking to you

about Mackenzie and said she was retethered you would think scar

tissue and might either get confused or share information with me that

was not correct for Mackenzie. The wording prevents this from happening.

Charnel

> > >

> > > I don't understand why there are those out there

> > that

> > > think there is no chance of Retethering in regards

> > to

> > > Filum Terminale. You had Surgery to cut the Filum,

> > > Surgery causes Scar Tissue..........which leads to

> > the

> > > possiblity of a Retether. Yes, I understand there

> > is

> > > a smaller chance of Retether with a Filum

> > Terminale,

> > > because it isn't as invasive, I've been told that

> > many

> > > times, I get it. But there is still a possiblity,

> > even if

> > > small.

> > >

> > > If she wasn't completely Detethered, and it is now

> > > causing her problems, if that's what's doing it, I

> > > still think that would be considered a

> > Retethering.

> > >

> > > Sorry for the ramble, it just baffles me.

> > >

> > > I would get a second Opinion for her if I were

> > you.

> > >

> > > Good luck. Hope she feels better soon.

> > >

> > > Me

> > > Nebraska, USA

> > > mymocha@

> > >

> > >

> > >

> > > The NSG here put my off saying that

> > > > filum terminale does not retether. I at this

> > point am thinking she

> > > > has not retethered she just was not fully

> > detethered in the first

> > > > place. Has anyone had filum tethering with

> > secondary ligament

> > > > thethering at the conus level.

> > >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

I would like to know:

1. What are the rates of retether for fatty filum (and not tight filum)?

2. How is a fatty filum surgery different from a (a) tight filum

surgery and ( lipoma tethering at the conus surgery. what I mean is

if the lipoma is attached to filum it is called fatty filum. If the

same small lipoma is attached to conus it is tethering at conus. What

is the difference in surgery procedures between the two, assuming

there is no involvement of nerve roots? Is the rate of retethering of

the two the same?

3. We had a MRI of the entire spine and the ns said no chiari. Can she

develop chiari at a later date?

4. Is there anyone who has a tight filum or fatty filum who does not

have other related issues like imperforate anus etc - ie, only

tethered filum?

Abby.

> > > >

> > > > I don't understand why there are those out there

> > > that

> > > > think there is no chance of Retethering in regards

> > > to

> > > > Filum Terminale. You had Surgery to cut the Filum,

> > > > Surgery causes Scar Tissue..........which leads to

> > > the

> > > > possiblity of a Retether. Yes, I understand there

> > > is

> > > > a smaller chance of Retether with a Filum

> > > Terminale,

> > > > because it isn't as invasive, I've been told that

> > > many

> > > > times, I get it. But there is still a possiblity,

> > > even if

> > > > small.

> > > >

> > > > If she wasn't completely Detethered, and it is now

> > > > causing her problems, if that's what's doing it, I

> > > > still think that would be considered a

> > > Retethering.

> > > >

> > > > Sorry for the ramble, it just baffles me.

> > > >

> > > > I would get a second Opinion for her if I were

> > > you.

> > > >

> > > > Good luck. Hope she feels better soon.

> > > >

> > > > Me

> > > > Nebraska, USA

> > > > mymocha@

> > > >

> > > >

> > > >

> > > > The NSG here put my off saying that

> > > > > filum terminale does not retether. I at this

> > > point am thinking she

> > > > > has not retethered she just was not fully

> > > detethered in the first

> > > > > place. Has anyone had filum tethering with

> > > secondary ligament

> > > > > thethering at the conus level.

> > > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Abby, I will only reply on your 4th point, as everyone else on this board

is contributing to the discussions about anatomy and formation

I ONLY had a tight filum (with one adhesion found during surgery). However

where the tight filum is/was (L5/S2) I only just discovered about 3 months

ago via MRI that I have a split vertebra which also goes into the lower

sacral area BUT this did not have any link to the TFT, and I had no

scarring or retethering complications post-surgery

On the other hand both feet are deformed due to the place I was tethered,

with other issues that have developed subsequent to the tethering -

erythromelalgia, complex regional pain syndrome and spondylolisthesis - all

in all a tongue twisting list of problems

Regards

Nina

Bristol, UK

--

> I would like to know:

>

> 1. What are the rates of retether for fatty filum (and not tight filum)?

> 2. How is a fatty filum surgery different from a (a) tight filum

> surgery and ( lipoma tethering at the conus surgery. what I mean is

> if the lipoma is attached to filum it is called fatty filum. If the

> same small lipoma is attached to conus it is tethering at conus. What

> is the difference in surgery procedures between the two, assuming

> there is no involvement of nerve roots? Is the rate of retethering of

> the two the same?

> 3. We had a MRI of the entire spine and the ns said no chiari. Can she

> develop chiari at a later date?

> 4. Is there anyone who has a tight filum or fatty filum who does not

> have other related issues like imperforate anus etc - ie, only

> tethered filum?

>

> Abby.

>

>

>> > > >

>> > > > I don't understand why there are those out there

>> > > that

>> > > > think there is no chance of Retethering in regards

>> > > to

>> > > > Filum Terminale. You had Surgery to cut the Filum,

>> > > > Surgery causes Scar Tissue..........which leads to

>> > > the

>> > > > possiblity of a Retether. Yes, I understand there

>> > > is

>> > > > a smaller chance of Retether with a Filum

>> > > Terminale,

>> > > > because it isn't as invasive, I've been told that

>> > > many

>> > > > times, I get it. But there is still a possiblity,

>> > > even if

>> > > > small.

>> > > >

>> > > > If she wasn't completely Detethered, and it is now

>> > > > causing her problems, if that's what's doing it, I

>> > > > still think that would be considered a

>> > > Retethering.

>> > > >

>> > > > Sorry for the ramble, it just baffles me.

>> > > >

>> > > > I would get a second Opinion for her if I were

>> > > you.

>> > > >

>> > > > Good luck. Hope she feels better soon.

>> > > >

>> > > > Me

>> > > > Nebraska, USA

>> > > > mymocha@

>> > > >

>> > > >

>> > > >

>> > > > The NSG here put my off saying that

>> > > > > filum terminale does not retether. I at this

>> > > point am thinking she

>> > > > > has not retethered she just was not fully

>> > > detethered in the first

>> > > > > place. Has anyone had filum tethering with

>> > > secondary ligament

>> > > > > thethering at the conus level.

>> > > >

>> > >

>> > >

>> > >

>> > >

>> > >

>> >

>> >

>> > __________________________________________________

>> >

[Guest guest]

Nina,

Was yours tight filum or fatty filum? Till today I didnt know there

was a difference, but apparently there is...you mention that they

found 1 adhesion - does that mean there was some kind of lipotamous

tissue connecting the filum and dura?

During the surgery did they cut off the filum so that it snapped up?

or did they just cut the connection between the adhesion with filum?

Does this question even make sense?

How long ago was the surgery? The reason I ask is that my doctors have

told that the prognosis and type of surgery is similar to that of

fatty filum.

Thanks for your input, Abby.

> >> > > >

> >> > > > I don't understand why there are those out there

> >> > > that

> >> > > > think there is no chance of Retethering in regards

> >> > > to

> >> > > > Filum Terminale. You had Surgery to cut the Filum,

> >> > > > Surgery causes Scar Tissue..........which leads to

> >> > > the

> >> > > > possiblity of a Retether. Yes, I understand there

> >> > > is

> >> > > > a smaller chance of Retether with a Filum

> >> > > Terminale,

> >> > > > because it isn't as invasive, I've been told that

> >> > > many

> >> > > > times, I get it. But there is still a possiblity,

> >> > > even if

> >> > > > small.

> >> > > >

> >> > > > If she wasn't completely Detethered, and it is now

> >> > > > causing her problems, if that's what's doing it, I

> >> > > > still think that would be considered a

> >> > > Retethering.

> >> > > >

> >> > > > Sorry for the ramble, it just baffles me.

> >> > > >

> >> > > > I would get a second Opinion for her if I were

> >> > > you.

> >> > > >

> >> > > > Good luck. Hope she feels better soon.

> >> > > >

> >> > > > Me

> >> > > > Nebraska, USA

> >> > > > mymocha@

> >> > > >

> >> > > >

> >> > > >

> >> > > > The NSG here put my off saying that

> >> > > > > filum terminale does not retether. I at this

> >> > > point am thinking she

> >> > > > > has not retethered she just was not fully

> >> > > detethered in the first

> >> > > > > place. Has anyone had filum tethering with

> >> > > secondary ligament

> >> > > > > thethering at the conus level.

> >> > > >

> >> > >

> >> > >

> >> > >

> >> > >

> >> > >

> >> >

> >> >

> >> > __________________________________________________

> >> >

[Guest guest]

Hi Abby,

1. mine was a tight fibrous filum, like rope strands bound together, rather

than a fatty filum which is the filum infiltrated with fat

2. adhesion: as far as I could gather from the nsg, as I only found this

out from the operation report (!), " another adhesion, which was clearly not

a nerve root, was clipped and there was a 1.5 cm (about 1 inch) springing

apart of the ends at division " . No I don't think the adhesion was a

lipoma-type structure

3. Yes, in the surgery, the nsg cut down through the skin, muscles and

ligaments, did a laminectomy at L5/S1, dissected the dura, and on opening

it saw that the cord extended well down into S1 and further into S2. As a

result they had to extend the laminectomy and dural incision, to be sure

that they were cutting the filum and not the cord (!!?!?!?) and then

holding the filum with one ligaclip and the end of the cord/filum with

another, divided it in the middle and the springing mentioned in point 1

happened.

4. My surgery was 31st July 2001, a hot, long and stressful day, was

scheduled to take 2.5 hours and took 4!, due to the complications outlined

above. My nsg is also quite cautious and so he took his time for the best

outcome.

5. Outcomes for everyone are different. I think the reason that my was a

success and that I haven't retethered, is that the nsg took his time, did a

thorough surgery, I had no other inter or intra-spinal problems (like

lipoma, syrinx, split cord, etc), and took 8-weeks off work in the first

instance to recover. With the benefit of hindsight I should have taken a

lot more time off work, as my pain levels soared when I tried to get back

to normal activities, but by learning the hard way, and now pacing myself,

I feel 99% recovered from the detethering surgery (nearly 5 years later).

Of course the release of nervous tissue, and structural problems with my

feet and apparently with my vertebra are now giving me more problems, but I

see that/those as separate issues to the tethering issue (although it is

all part of the same spectrum of Tethered Cord Syndrome)

Sorry to go on, but I hope this has answered some questions. Please do keep

asking them, as all information is useful to us unique people with TCS!

Best wishes

Nina

--

> Nina,

>

> Was yours tight filum or fatty filum? Till today I didnt know there

> was a difference, but apparently there is...you mention that they

> found 1 adhesion - does that mean there was some kind of lipotamous

> tissue connecting the filum and dura?

>

> During the surgery did they cut off the filum so that it snapped up?

> or did they just cut the connection between the adhesion with filum?

> Does this question even make sense?

>

> How long ago was the surgery? The reason I ask is that my doctors have

> told that the prognosis and type of surgery is similar to that of

> fatty filum.

>

> Thanks for your input, Abby.

>

>

>> >> > > >

>> >> > > > I don't understand why there are those out there

>> >> > > that

>> >> > > > think there is no chance of Retethering in regards

>> >> > > to

>> >> > > > Filum Terminale. You had Surgery to cut the Filum,

>> >> > > > Surgery causes Scar Tissue..........which leads to

>> >> > > the

>> >> > > > possiblity of a Retether. Yes, I understand there

>> >> > > is

>> >> > > > a smaller chance of Retether with a Filum

>> >> > > Terminale,

>> >> > > > because it isn't as invasive, I've been told that

>> >> > > many

>> >> > > > times, I get it. But there is still a possiblity,

>> >> > > even if

>> >> > > > small.

>> >> > > >

>> >> > > > If she wasn't completely Detethered, and it is now

>> >> > > > causing her problems, if that's what's doing it, I

>> >> > > > still think that would be considered a

>> >> > > Retethering.

>> >> > > >

>> >> > > > Sorry for the ramble, it just baffles me.

>> >> > > >

>> >> > > > I would get a second Opinion for her if I were

>> >> > > you.

>> >> > > >

>> >> > > > Good luck. Hope she feels better soon.

>> >> > > >

>> >> > > > Me

>> >> > > > Nebraska, USA

>> >> > > > mymocha@

>> >> > > >

>> >> > > >

>> >> > > >

>> >> > > > The NSG here put my off saying that

>> >> > > > > filum terminale does not retether. I at this

>> >> > > point am thinking she

>> >> > > > > has not retethered she just was not fully

>> >> > > detethered in the first

>> >> > > > > place. Has anyone had filum tethering with

>> >> > > secondary ligament

>> >> > > > > thethering at the conus level.

>> >> > > >

>> >> > >

>> >> > >

>> >> > >

>> >> > >

>> >> > >

>> >> >

>> >> >

>> >> > __________________________________________________

>> >> >

[Guest guest]

my 2 cents

charneloj said the following on 5/4/2006 11:03 AM:

> ,

> Scar tissue is a major source of retethering when you have a type of

> tethered cord where the cord is itself adheared to scar tissues or

> origionally fibrous tissues as seen with spina bifida.

I was tethered between L4 and L5, no SB or family history of SB. My nsg

report does not say how or what but I know there is/was no lipoma. Upon

release, I dont have the exact words, the conus retracted to the normal

level, L1 I assume. I think I read an inch and a half retraction. During

a post-opt visit with the nsg, he stated that there were active nerve

roots that had grown through the tether and had to be cut. I walked

unassisted before surgery, I can not walk unassisted now. Had I not had

surgery, I would most likely be totally paralyzed below the waist. The

nsg was concerned about scar tissue, said keep active so it did not have

a chance to adhere to the conus. 8+ years post surgery, I am still

improving, very slowly.

> Tight filum

> does not usually have this issue as much beause the origional problem

> is not of cord tethering in this manner unless, the is a lipoma

> causing adhesion in which case it is called fatty filum (and those

> cases do retether at rates closer to the spina bifida type of

> tethering) The problem with uncomplicated cases of tight filum is not

> one of adheasions but of the naturally occuring structure being

> inelastic. You are talking about a piece of ligament that is

> millimeteres thick. When it is cut the ends do not sit next to each

> other to heal (and retether with scar tissue) but move avay from each

> other as the tension is relaesed. This set of circumstances makes it

> highly unlikely that a retether will occur. If it does it is not the

> filum readhearing to itself but to another structure. I did not say

> in my post that this never happens. I said the my daughter's NSG here

> said that. I understand that it can rarely occur that is why we took

> Mackenzie to NY for a second opinion. The point I was trying to make

> was that I had a question as to secondary tethering not the likelyhood

> as to Mackenzie being retethered. Her sacral nerves all appear to be

> fine and there is no significant scar tissue but there is an issues at

> the conus and possibly at the thorasic region throwing things off. I

> just have not heard much about these fibrous adheasions being seen in

> conjunction with tight filum and was curious if they are occuring or

> are being recognised in more that just the chiari population that is

> being detethered right now. Mackenzie does not have spina biffida and

> I am trying to form an opinion as to the causative nature of them.

> Right now I think it is related to the EDS in agreement with her Docs

> in NY but I want to learn more. I am having difficulties finding case

> study in this specific area.

>

> I think the difference between retether and aditional tethering is

> huge. First of all it changes the picture as to treatment and how we

> would decide what to do for Mackenzie. With the additional tethering

> I am much more open to persuing surgically because to this point she

> has had no issues with internal scar tissue following her previous

> surgeries. If she had I would be a LOT less likely to look at surgery

> for her. Secondly it is necessary to be precise in our wording so as

> to avoid confusion in the discussion at hand. If I was talking to you

> about Mackenzie and said she was retethered you would think scar

> tissue and might either get confused or share information with me that

> was not correct for Mackenzie. The wording prevents this from happening.

>

>

[Guest guest]

Hi Nina,

Your situation is amazingly similar to mine. I just wish I had not

waited 18 months after symptoms became a problem, to have surgery.

Rick

AB Bunton, Electrical & Electronic Engineering said the following on

5/4/2006 3:11 PM:

> Hi Abby,

>

> 1. mine was a tight fibrous filum, like rope strands bound together, rather

> than a fatty filum which is the filum infiltrated with fat

>

> 2. adhesion: as far as I could gather from the nsg, as I only found this

> out from the operation report (!), " another adhesion, which was clearly not

> a nerve root, was clipped and there was a 1.5 cm (about 1 inch) springing

> apart of the ends at division " . No I don't think the adhesion was a

> lipoma-type structure

>

> 3. Yes, in the surgery, the nsg cut down through the skin, muscles and

> ligaments, did a laminectomy at L5/S1, dissected the dura, and on opening

> it saw that the cord extended well down into S1 and further into S2. As a

> result they had to extend the laminectomy and dural incision, to be sure

> that they were cutting the filum and not the cord (!!?!?!?) and then

> holding the filum with one ligaclip and the end of the cord/filum with

> another, divided it in the middle and the springing mentioned in point 1

> happened.

>

> 4. My surgery was 31st July 2001, a hot, long and stressful day, was

> scheduled to take 2.5 hours and took 4!, due to the complications outlined

> above. My nsg is also quite cautious and so he took his time for the best

> outcome.

>

> 5. Outcomes for everyone are different. I think the reason that my was a

> success and that I haven't retethered, is that the nsg took his time, did a

> thorough surgery, I had no other inter or intra-spinal problems (like

> lipoma, syrinx, split cord, etc), and took 8-weeks off work in the first

> instance to recover. With the benefit of hindsight I should have taken a

> lot more time off work, as my pain levels soared when I tried to get back

> to normal activities, but by learning the hard way, and now pacing myself,

> I feel 99% recovered from the detethering surgery (nearly 5 years later).

> Of course the release of nervous tissue, and structural problems with my

> feet and apparently with my vertebra are now giving me more problems, but I

> see that/those as separate issues to the tethering issue (although it is

> all part of the same spectrum of Tethered Cord Syndrome)

>

>

[Guest guest]

Hi Abby

1. I don't know but is supposed to be every low

2. Each has it's own technique

3. No chiari now, probably never Chiari as far as I know.

4. I have just tight filum, no SB, no other issues that I know of except a

slight segmentation abnormality at S1 possibly. The down side of this is that no

one suspected tsc b/c there wasn't any outward signs.

Good luck!

Re: question on primary tethering at the conus

I would like to know:

1. What are the rates of retether for fatty filum (and not tight filum)?

2. How is a fatty filum surgery different from a (a) tight filum

surgery and ( lipoma tethering at the conus surgery. what I mean is

if the lipoma is attached to filum it is called fatty filum. If the

same small lipoma is attached to conus it is tethering at conus. What

is the difference in surgery procedures between the two, assuming

there is no involvement of nerve roots? Is the rate of retethering of

the two the same?

3. We had a MRI of the entire spine and the ns said no chiari. Can she

develop chiari at a later date?

4. Is there anyone who has a tight filum or fatty filum who does not

have other related issues like imperforate anus etc - ie, only

tethered filum?

Abby.

> > > >

> > > > I don't understand why there are those out there

> > > that

> > > > think there is no chance of Retethering in regards

> > > to

> > > > Filum Terminale. You had Surgery to cut the Filum,

> > > > Surgery causes Scar Tissue..........which leads to

> > > the

> > > > possiblity of a Retether. Yes, I understand there

> > > is

> > > > a smaller chance of Retether with a Filum

> > > Terminale,

> > > > because it isn't as invasive, I've been told that

> > > many

> > > > times, I get it. But there is still a possiblity,

> > > even if

> > > > small.

> > > >

> > > > If she wasn't completely Detethered, and it is now

> > > > causing her problems, if that's what's doing it, I

> > > > still think that would be considered a

> > > Retethering.

> > > >

> > > > Sorry for the ramble, it just baffles me.

> > > >

> > > > I would get a second Opinion for her if I were

> > > you.

> > > >

> > > > Good luck. Hope she feels better soon.

> > > >

> > > > Me

> > > > Nebraska, USA

> > > > mymocha@

> > > >

> > > >

> > > >

> > > > The NSG here put my off saying that

> > > > > filum terminale does not retether. I at this

> > > point am thinking she

> > > > > has not retethered she just was not fully

> > > detethered in the first

> > > > > place. Has anyone had filum tethering with

> > > secondary ligament

> > > > > thethering at the conus level.

> > > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hey, AG, I know you don't know the exact numbers for

the question #1, but can you sort of define " very

low " ? Is it in the 1-5% range, less? Just curious.

I got a really low number when I had my first surgery

about the problem happening again, at least it sounded

low at the time, and I just wonder about the other

types of tethers.

--- A Gosp wrote:

> Hi Abby

> 1. I don't know but is supposed to be every low

> 2. Each has it's own technique

> 3. No chiari now, probably never Chiari as far as I

> know.

> 4. I have just tight filum, no SB, no other issues

> that I know of except a slight segmentation

> abnormality at S1 possibly. The down side of this is

> that no one suspected tsc b/c there wasn't any

> outward signs.

> Good luck!

> Re: question on primary tethering

> at the conus

>

>

> I would like to know:

>

> 1. What are the rates of retether for fatty filum

> (and not tight filum)?

> 2. How is a fatty filum surgery different from a

> (a) tight filum

> surgery and ( lipoma tethering at the conus

> surgery. what I mean is

> if the lipoma is attached to filum it is called

> fatty filum. If the

> same small lipoma is attached to conus it is

> tethering at conus. What

> is the difference in surgery procedures between

> the two, assuming

> there is no involvement of nerve roots? Is the

> rate of retethering of

> the two the same?

> 3. We had a MRI of the entire spine and the ns

> said no chiari. Can she

> develop chiari at a later date?

> 4. Is there anyone who has a tight filum or fatty

> filum who does not

> have other related issues like imperforate anus

> etc - ie, only

> tethered filum?

>

> Abby.

>

>

> > > > >

> > > > > I don't understand why there are those out

> there

> > > > that

> > > > > think there is no chance of Retethering in

> regards

> > > > to

> > > > > Filum Terminale. You had Surgery to cut

> the Filum,

> > > > > Surgery causes Scar Tissue..........which

> leads to

> > > > the

> > > > > possiblity of a Retether. Yes, I

> understand there

> > > > is

> > > > > a smaller chance of Retether with a Filum

> > > > Terminale,

> > > > > because it isn't as invasive, I've been

> told that

> > > > many

> > > > > times, I get it. But there is still a

> possiblity,

> > > > even if

> > > > > small.

> > > > >

> > > > > If she wasn't completely Detethered, and

> it is now

> > > > > causing her problems, if that's what's

> doing it, I

> > > > > still think that would be considered a

> > > > Retethering.

> > > > >

> > > > > Sorry for the ramble, it just baffles me.

> > > > >

> > > > > I would get a second Opinion for her if I

> were

> > > > you.

> > > > >

> > > > > Good luck. Hope she feels better soon.

> > > > >

> > > > > Me

> > > > > Nebraska, USA

> > > > > mymocha@

> > > > >

> > > > >

> > > > >

> > > > > The NSG here put my off saying that

> > > > > > filum terminale does not retether. I at

> this

> > > > point am thinking she

> > > > > > has not retethered she just was not

> fully

> > > > detethered in the first

> > > > > > place. Has anyone had filum tethering

> with

> > > > secondary ligament

> > > > > > thethering at the conus level.

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > >

> > >

> > >

> __________________________________________________

> > >

[Guest guest]

,

I was asking about fatty filum though and not tight filum. I think

Charnel said that there is a difference in the retethering rate and

the fatty filum retethering more closely resembled spina bifida case.

Do you have fatty filum or tight filum?

Abby.

> > > > > >

> > > > > > I don't understand why there are those out

> > there

> > > > > that

> > > > > > think there is no chance of Retethering in

> > regards

> > > > > to

> > > > > > Filum Terminale. You had Surgery to cut

> > the Filum,

> > > > > > Surgery causes Scar Tissue..........which

> > leads to

> > > > > the

> > > > > > possiblity of a Retether. Yes, I

> > understand there

> > > > > is

> > > > > > a smaller chance of Retether with a Filum

> > > > > Terminale,

> > > > > > because it isn't as invasive, I've been

> > told that

> > > > > many

> > > > > > times, I get it. But there is still a

> > possiblity,

> > > > > even if

> > > > > > small.

> > > > > >

> > > > > > If she wasn't completely Detethered, and

> > it is now

> > > > > > causing her problems, if that's what's

> > doing it, I

> > > > > > still think that would be considered a

> > > > > Retethering.

> > > > > >

> > > > > > Sorry for the ramble, it just baffles me.

> > > > > >

> > > > > > I would get a second Opinion for her if I

> > were

> > > > > you.

> > > > > >

> > > > > > Good luck. Hope she feels better soon.

> > > > > >

> > > > > > Me

> > > > > > Nebraska, USA

> > > > > > mymocha@

> > > > > >

> > > > > >

> > > > > >

> > > > > > The NSG here put my off saying that

> > > > > > > filum terminale does not retether. I at

> > this

> > > > > point am thinking she

> > > > > > > has not retethered she just was not

> > fully

> > > > > detethered in the first

> > > > > > > place. Has anyone had filum tethering

> > with

> > > > > secondary ligament

> > > > > > > thethering at the conus level.

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > >

> > > >

> > > >

> > __________________________________________________

> > > >