Re: tethering - percents

[Guest guest]

I haven't seen this either. I have seen other attempts at it.......but I

don't think anything is completely accurate, as there are too many

variables. I doubt there will ever be an accurate and complete set of

percentages regarding this (no matter how or why you are Tethered, although

some forms may be easier to obtain more on), or atleast it will be a long

time coming before it happens.

Sometimes the percentages or the like that they have formed are interesting

to see, other times it just makes things more frustrating. So I try not to

form too many opinions based on whats been put out there. That used to be

harder to do then it is now, or rather it was easier to form some opinions

then, then it is now.

Me

Nebraska, USA

mymocha@...

, Would you mind sending that link with the percentages? I

couldn't find it.

[Guest guest]

_http://www.sbaa.org/site/c.gpILKXOEJqG/b.2021285/k.328D/Lipomas_and_Lipomyelo

meningoceles.htm_

(http://www.sbaa.org/site/c.gpILKXOEJqG/b.2021285/k.328D/Lipomas_and_Lipomyelome\

ningoceles.htm)

It will be the last Q & A on the bottom of the page " How are Lipomas LMC

treated? " Its just a short note on the SBAA's data regarding detethering

outcomes.

I pasted it below as well in case there are problems with the link.

How are lipomyelomeningoceles treated?

Since symptoms are due to (1) tethering of the spinal cord, especially

during growth spurts, and (2) compression due to progressive deposition of fat,

especially during periods of rapid weight gain; the goals of surgery are to

release the attachment of the fat to the spinal cord (tethering) and reduce the

bulk of the fatty tumor. Simple cosmetic treatment of the subcutaneous fat

pad does not prevent neurologic deficit, and may make later definitive

treatment more difficult.

Surgical treatment is indicated when the patient reaches 2 months of age, or

at the time of diagnosis if the patient presents at a later age. Overall,

with surgery 19 percent of patients will improve, 75 percent will be unchanged,

and 6 percent will worsen.

This information does not constitute medical advice for any individual. As

specific cases may vary from the general information presented here, SBA

advises readers to consult a qualified medical or other professional on an

individual basis.

[Guest guest]

Wow..unimpressive surgery outcome data, yes? Do you think they are

referring to lipomyelomeningoceles specifically or detethering due to all

causes?

Randee

In a message dated 12/24/2006 5:33:30 P.M. Eastern Standard Time,

finnishcandles@... writes:

__http://www.sbaa.http://wwhttp://www.sbahttp://wwwhttp://www.sbaahttp://www.s

b_

(http://www.sbaa.org/site/c.gpILKXOEJqG/b.2021285/k.328D/Lipomas_and_Lipomyelo)

meningoceles.meningoce

(_http://www.sbaa.http://wwhttp://www.sbahttp://wwwhttp://www.sbaahttp://www.s

baa.http://wwwhtt_

(http://www.sbaa.org/site/c.gpILKXOEJqG/b.2021285/k.328D/Lipomas_and_Lipomyelome\

ningoceles.htm) )

It will be the last Q & A on the bottom of the page " How are Lipomas LMC

treated? " Its just a short note on the SBAA's data regarding detethering

outcomes.

I pasted it below as well in case there are problems with the link.

How are lipomyelomeningocelHow are lipomyel

Since symptoms are due to (1) tethering of the spinal cord, especially

during growth spurts, and (2) compression due to progressive deposition of

fat,

especially during periods of rapid weight gain; the goals of surgery are to

release the attachment of the fat to the spinal cord (tethering) and reduce

the

bulk of the fatty tumor. Simple cosmetic treatment of the subcutaneous fat

pad does not prevent neurologic deficit, and may make later definitive

treatment more difficult.

Surgical treatment is indicated when the patient reaches 2 months of age, or

at the time of diagnosis if the patient presents at a later age. Overall,

with surgery 19 percent of patients will improve, 75 percent will be

unchanged,

and 6 percent will worsen.

This information does not constitute medical advice for any individual. As

specific cases may vary from the general information presented here, SBA

advises readers to consult a qualified medical or other professional on an

individual basis.

[Non-text portions of this message have been removed]

[Guest guest]

Hi gang,

Hope everyone had a happy holiday. Mine was hectic!

Randee, those percents are about the average of what you see online in

the medical journals (I've seen some better, some worse), altho most

of the older ones will report that they personally rarely see retether

in their patients. Most nsg will tell you that a cord release is to

stop the progression of symptoms. Anything that improves is a plus.

As I've said before, a tethered cord release surgery doesn't fix

things like an appendectomy does.

Plus remember that there are very few long range studies to report on

how folks are doing 5,10, 15 years post op.

V

>

> Wow..unimpressive surgery outcome data, yes? Do you think they are

> referring to lipomyelomeningoceles specifically or detethering due

to all causes?

> Randee

[Guest guest]

Randee,

From what I understood, that fact sheet refers specifically to LMC, not

tethering of all causes. SBAA has a different fact sheet for TCS. I don't

put that much stock in their surgical outcomes data -- I have read stuff all

over the map, although it does seem that outcome data is worse than others..

then again, I haven't read much outcome data on LMC, specifically.

What I found disturbing was their surgical reccommendations -- about when to

have surgery. I could understand why someone with LMC may want to have the

surgery regardless of being symptomatic (because lipomas grow); however, it

seems to me that many neurosurgeons today are applying those " rules " of when

to operate to TCS (either TCS alone or just with SBO) regardless of whether

the patient is symptomatic or not -- there are no lipomas to grow, the SBO

is not going to change, etc. Once you have untethering surgery, most

sources (and surgeons I talked to) say that the patient WILL retether. The

tether may not ever become symptomatic (the goal), but the tether is there,

and always has the potential to be... So, if you are asymptomatically

tethered, why potentially create a situation where you will just need

another surgery down the line? (Kind of the " if its not broke, don't fix

it " theory). There are adults who have TCS and lived their lives with it

and find out incidentally they have it and may or may not become symptomatic

later in life. Had the TCS been found as a young child when they were

asymptomatic, it is possible that the person could have lived 25 years

before needing intervention. If the person knows they have TCS, then either

the parent or the person themselves can monitor their body closely for any

neuro changes and catch them early. Just my opinion. I have always been

of the mindset that surgeons like to operate.

Anyway, aside from my opinion and to the research, I felt better after

reading SBAAs fact sheet on TCS, and the reccommendations were different

(from LMC factsheet). The complication rate of 1-2% is what I was quoted on

my first 2 surgeries (my third was more complex and risky b/c of my previous

2 surgeries and was therefore more risky). I have cut and paste the

highlights below,but you can read the whole fact sheet at www.sbaa.org:

Although the exact frequency with which it occurs isn't entirely known, it

is estimated that from 20-50 percent of children with spina bifida will, at

some time, require surgery to untether the spinal cord, making this

operation the second most common operation (behind shunt

operations<http://www.sbaa.org/site/lookup.asp?c=gpILKXOEJqG & b=2021113>)

in these children.

*How is a Tethered Cord Diagnosed?*

It is important to know that virtually every child with spina bifida has

evidence of tethering on the MRI for the reasons discussed above; untethering

is therefore generally only performed if there are clinical signs or

symptoms of deterioration.

*When and how is surgery performed?*

Unfortunately, since the MRI almost always shows tethering radiographically,

the decision usually relies on the neurosurgeon's judgment as to what is

causing the patient's symptoms and signs. A child with mild back pain who is

otherwise stable might reasonably be watched or managed without surgery as

long as they remain stable and the pain is manageable. On the other hand,

progressive or severe pain, loss of muscle function or deterioration in

gait, or changes in bladder or bowel function usually require an operation

to prevent further deterioration. Timing of surgery is important, as the

longer deterioration is allowed to continue, the less likely function will

return to its baseline with surgery; the timing depends upon the magnitude

and rapidity of the changes.

Recovery of lost muscle and bladder function is variable, and again depends

upon both the degree and length of the pre-operative losses. Although we

hope for improvements, it is important to understand that untethering is

designed primarily to prevent further deterioration, rather than to improve

deterioration that has already occurred.

*What are the complications of untethering?*

Untethering is generally a very safe procedure in experienced hands;

however, the scar can make dissection difficult and the abnormal anatomy can

be confusing at times, even to the experienced neurosurgeon. Complications

are few, but include 1) infection, 2) bleeding, 3) damage to the spinal cord

and myelomeningocele resulting in worsening muscle, bladder, or bowel

function. The combined complication rate of surgery is usually only 1-2

percent.

*Is repeat untethering necessary?*

Symptomatic tethering can occur at any time in the child's life, although

the most common time is in the early pre-adolescent period (7-12 years) and

extending into mid-adolescence. Symptoms from tethering can often occur

during periods of growth…

Although most children require only one untethering procedure, a minority

(perhaps 10-20 percent) require repeated untethering operations as the

children continue to grow. Those who undergo untethering very early in life

(as toddlers or young children) may more frequently require additional

untethering procedures later, as they continue to grow.

*Can anything be done to prevent tethering?*

…none has met with unqualified success in long term studies. Surgeons have

placed grafts of various substances such as Dacron, Teflon, and other

materials around the myelomeningocele hoping to prevent scarring to the

surrounding dura. Some of these have actually produced more scarring.**

Jenn

>

>

> Wow..unimpressive surgery outcome data, yes? Do you think they are

> referring to lipomyelomeningoceles specifically or detethering due to all

> causes?

> Randee

>

> In a message dated 12/24/2006 5:33:30 P.M. Eastern Standard Time,

> finnishcandles@... <finnishcandles%40aol.com> writes:

>

>

> How are lipomyelomeningocelHow are lipomyel

> Since symptoms are due to (1) tethering of the spinal cord, especially

> during growth spurts, and (2) compression due to progressive deposition of

>

> fat,

> especially during periods of rapid weight gain; the goals of surgery are

> to

> release the attachment of the fat to the spinal cord (tethering) and

> reduce

> the

> bulk of the fatty tumor. Simple cosmetic treatment of the subcutaneous fat

>

> pad does not prevent neurologic deficit, and may make later definitive

> treatment more difficult.

> Surgical treatment is indicated when the patient reaches 2 months of age,

> or

> at the time of diagnosis if the patient presents at a later age. Overall,

> with surgery 19 percent of patients will improve, 75 percent will be

> unchanged,

> and 6 percent will worsen.

>

>

>

[Guest guest]

I think we need to remember that SBAA was started by a group of

parents of children who had open SB for other parents in the same

situation and that has traditionallyy been its focus. So, for a long

time all of its information was about 'traditional' SB. Only in the

last 5 years or so, have they added the info about spinal lipomas, SBO

& TC to their website. The TC they talk about is from the view point

of a person/child who has SB closure at birth and is tethered from

scars from that operation.

For the fact sheets, they depend on information that has been

published in medical journals. One time I contacted them about

something I thought should be included in one, and the reply was that

they suspected I was right, but there had been nothing published to

document that information. (Sorry, I can't remember what it was, right

now.)

Those surgical recommendations come from the surgeons to SBAA, not

SBAA to the surgeons. I belong to a LMC/TCS list, where the members

are almost all parents. Every single one of them has posted that nsg

wanted to do cord releases as soon as TC are spotted. Any TC, not just

LMC. Wanting to do the best for their child, as we all do, and wanted

them to grow up as 'normal' as possible, parents follow the doctors'

recommendations.

At least on the TC fact sheet they say:

" The decision to untether requires some clinical judgment on the part

of the neurosurgeon, who must take into account both the patient's

symptoms and signs and the results of the pre-operative studies.

Unfortunately, since the MRI almost always shows tethering

radiographically, the decision usually relies on the neurosurgeon's

judgment as to what is causing the patient's symptoms and signs. A

child with mild back pain who is otherwise stable might reasonably be

watched or managed without surgery as long as they remain stable and

the pain is manageable. On the other hand, progressive or severe pain,

loss of muscle function or deterioration in gait, or changes in

bladder or bowel function usually require an operation to prevent

further deterioration. Timing of surgery is important, as the longer

deterioration is allowed to continue, the less likely function will

return to its baseline with surgery; the timing depends upon the

magnitude and rapidity of the changes. "

V

> What I found disturbing was their surgical reccommendations -- about

when to

> have surgery. I could understand why someone with LMC may want to

have the

> surgery regardless of being symptomatic (because lipomas grow);

however, it

> seems to me that many neurosurgeons today are applying those " rules "

of when

> to operate to TCS (either TCS alone or just with SBO) regardless of

whether

> the patient is symptomatic or not -- there are no lipomas to grow,

the SBO

> is not going to change, etc. Once you have untethering surgery, most

> sources (and surgeons I talked to) say that the patient WILL

retether. The

> tether may not ever become symptomatic (the goal), but the tether is

there,

> and always has the potential to be... So, if you are asymptomatically

> tethered, why potentially create a situation where you will just need

> another surgery down the line? (Kind of the " if its not broke,

don't fix

> it " theory). There are adults who have TCS and lived their lives

with it

> and find out incidentally they have it and may or may not become

symptomatic

> later in life. Had the TCS been found as a young child when they were

> asymptomatic, it is possible that the person could have lived 25 years

> before needing intervention. If the person knows they have TCS,

then either

> the parent or the person themselves can monitor their body closely

for any

> neuro changes and catch them early. Just my opinion. I have

always been

> of the mindset that surgeons like to operate.