Re: Surgery vs no surgery for tethered cord

[Guest guest]

subub_98 said the following on 4/7/2006 2:36 PM:

> Hi all,

>

> I am a new member to this group. My daughter is 5 months old and we

> found last month that she has a intradural lipoma (not

> lipomyelomeningocele) and her cord is tethered. According to several

> doctors, it is a mild case (small lipoma, no entanglement with nerve

> roots, vertebrae and dura intact - lipoma wholly inside the dura, no

> other complication) and very straight forward within the tethered cord

> categories. The conus is in the normal L1 position.

>

> Nonetheless, almost all doctors recommend surgery. One doctor said he

> recommended surgery, but it was also a reasonable option to wait if we

> wanted to. She is, asymptomatic. The deeper I ask questions, the more

> obvious it is that they just dont know what the risks are and how much

> - they recommend surgery to all who have tethered cord.

>

> I would like to know if there are adults in this group, who have

> tethered cord, who have and had not had surgery, and your experience.

> I guess there is no one who is completely asymptomatic in this group?

> What are your thoughts about whether or not to have surgery and its

> timing?

>

>

a major benefit to surgery now is to prevent future problems.

the risk involved with surgery now is scar tissue which can also cause

future problems.

i was asymptomatic for 42 years then bam, in 18 months i could no longer

walk.

rick

[Guest guest]

Hi Abby,

Welcome!

It sounds like your daughter has no neurologic, bladder/bowel involvement from

the lipoma that has been detected so far, right? So even though this must be a

shock and difficult process and maybe your first big heart ache as her Mommy,

you are ahead of the game and fortunate to find this early on. What triggered

looking for it then, did she have outside skin findings?

Hard decision, but all I can say is I wish I had had surgery before I was

symptomatic b/c I'd be in a lot better shape now.

There is a lot of controversy about what to do with us adults (I'm 38) that

develop problems later in life, the main reason seems to be that they used to

think there was nothing to gain from operating adults b/c it was too late in the

process of nerve damage. Now of course MRIs weren't even around when we were

kids so no one was going to do " exploratory surgery " on a kid like me that went

to the bathroom a lot, fell all the time with ingoing toes and no

foot/skin/outward signs. My Mom had enough common sense to decline the surgeries

that the orthopedist proposed (some type of tibial osteotomy that would put me

in a wheelchair x 6m then braces for 6 months) and instead went with a more

conservative doctor that recommended a pair of night boots with a bar pointing

my feet out and corrective shoes and forced ballet...but no one ever thought I

had tsc that was causing my problems until I was 37 and developed severe nerve

pain, gradual loss of my ability to walk more than a few minutes, bladder/bowel

symptoms.

Sorry to babble on but the point is that in very good experienced hands, the

evidence in children for long term bladder/bowel, gait, etc.. function suggests

better prognosis if she is treated before neurologic damage occurs (I.e. risks

out way benefits). The chance of recovering bladder function once it is gone is

not very good with surgery (50%?). The chance of improving the leg problems if

they occur is better. Now, that's the million dollar question, when is before

damage occurs? Is that now? At 10? 20? There are probably a lot of people out

there with this problem that never knew it and live happily with no symptoms.

I think only talking to lots of people will give you that answer which is key to

the decision process. Every surgery has risks so you need to be very comfortable

with your surgeon and if you make that decision take your time to do so. Sorry

that I'm not familiar enough with her problem to help give you an idea about

timing.

When I had my surgery I decided to do it before my first consultation with my

neurosurgeon and I had surgery a few weeks later. It was just a matter of

finding the right surgeon that would do it for me. My case was totally different

though, complete different scenario, I was deteriorating severely and had a very

hard time finding the right set of doctors that could help me so it took almost

a year to figure it out b/c I have no outward signs, no spina bifida, just tight

fillum that no one without an expertise in this area would know how to diagnose.

It hasn't been easy but I am much better than I was and I continue to improve. I

still have a lot of pain in the nerves but the use of my legs has improved

enormously. I recently stored my cane in the attic and no longer need a

wheelchair for any distance. I still have issues but it's only been 4m since

surgery.

Best wishes in this process, keep us posted

ia

Surgery vs no surgery for tethered cord

Hi all,

I am a new member to this group. My daughter is 5 months old and we

found last month that she has a intradural lipoma (not

lipomyelomeningocele) and her cord is tethered. According to several

doctors, it is a mild case (small lipoma, no entanglement with nerve

roots, vertebrae and dura intact - lipoma wholly inside the dura, no

other complication) and very straight forward within the tethered cord

categories. The conus is in the normal L1 position.

Nonetheless, almost all doctors recommend surgery. One doctor said he

recommended surgery, but it was also a reasonable option to wait if we

wanted to. She is, asymptomatic. The deeper I ask questions, the more

obvious it is that they just dont know what the risks are and how much

- they recommend surgery to all who have tethered cord.

I would like to know if there are adults in this group, who have

tethered cord, who have and had not had surgery, and your experience.

I guess there is no one who is completely asymptomatic in this group?

What are your thoughts about whether or not to have surgery and its

timing?

Thanks, Abby.

Not Medical Advice. We Are Not Doctors.

Need help with the list? Email

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

[Guest guest]

So is her Lipoma in a different area then the Tether?

2 seperate issues?

Personally, if she is truely asymptomatic, I would

take a wait and see approach.

I did not have any Symptoms before my first

Detethering.

Me

Nebraska, USA

mymymocha@...

> I am a new member to this group. My daughter is 5 months old and we

> found last month that she has a intradural lipoma (not

> lipomyelomeningocele) and her cord is tethered. According to several

> doctors, it is a mild case (small lipoma, no entanglement with nerve

> roots, vertebrae and dura intact - lipoma wholly inside the dura, no

> other complication) and very straight forward within the tethered cord

> categories. The conus is in the normal L1 position.

>

> Nonetheless, almost all doctors recommend surgery. One doctor said he

> recommended surgery, but it was also a reasonable option to wait if we

> wanted to. She is, asymptomatic. The deeper I ask questions, the more

> obvious it is that they just dont know what the risks are and how much

> - they recommend surgery to all who have tethered cord.

>

> I would like to know if there are adults in this group, who have

> tethered cord, who have and had not had surgery, and your experience.

> I guess there is no one who is completely asymptomatic in this group?

[Guest guest]

Some have said that they wished they had had the

Surgery before they were Symptomatic, because

they believe they would be better off now if they

did.

I wanted to give my input/opinions on this as well.

There is no way to tell for certain if a person would

be better off if they would have had Surgery eariler

rather then later.........there is not a way for that to

be evaluated.........atleast to my knowledge. There

are educated guesses though, and to a reasonable

degree of certaintiy. But that still leaves quite a

bit up in the air.

I had my first Detethering without Symptoms. I

regret it, and it didn't need to be done ( I have

been told this). But I was a child at the time and

had no say so.

I had my second Detethering due to Symptoms

that were believed to be Tethered Cord related.

I do regret it to an extent, but, something needed to be done, I was

desperate. I was an Adult at this time.

I ended up worse off right after both Detetherings.

That's not said to scare you, but just to let you

know how it turned out for me.

Me

Nebraska, USA

mymocha@...

[Guest guest]

Hi -

Thanks for letting me know. I am totally scared anyway - with or

without the surgery.

How old were you when you had first surgery? What kind of problem do

you/did you have? Was it a regular lipomyelomeningocele? Did it have

the nerves entangled? Did it tunnel via the outer skin into the spinal

cord, with vertebral and dural defect? What was the mass of the

lipoma? Did they remove all the lipoma? Did they have to patch the

dura with something? Was the surgery considered a success? What

symptoms did you get after the surgery? How long after the surgery did

you get the symptoms? When was your second surgery? All the ns I talk

to seem very highly confident of the success of a surgery. Please let

me know.

My daughter's lipoma and tether are at the same place. The lipoma is a

small strand of fat, about 2 inches long and thickness of a spaghetti.

It is attached at the T12-L1 conus on one end and somewhere around L3

at the other end. The place where it is connected at conus does not

have any nerve roots coming out (at that point) - so it is not

entangled with nerves. However, since it is attaching itself to the

conus, it is considered tethered. It is inside the dura, and the dura

and bones are all intact - there seems to be no connection between the

small lump outside and the fat inside (according to all 4 ns and

radiologist). There is possibility of filamentous connection, but even

if it were, nobody is going to touch it. If there is a surgery, there

will be no dura patching.

Every ns I talk to (I have talked to 4 so far, and will be talking to

1 more next week) has recommended surgery. One said that wait and

watch is a reasonable option, but if it were his kid, he would do

surgery. Dr. McLone called from Chicago after looking at the films and

said that this was a very unusual case, but would fall under tc.

However, it was very low risk, one-time surgery he thought. He said it

should be treated like a fatty filum (which I didnt understand) and

the prognosis is like that of a fatty filum. He felt the risk of

retethering was very highly unlikely, or negligible. He recommended

surgery.

I am worried about just the surgery, and retethering. I am worried

that if my daughter is of a kind who generates lot of scar tissue,

then she could have a retether more complicated than the original

tether - since the original tether is small, and her conus is in the

right position.

Sorry for rambling - I seem to be doing it a lot these days.

Thanks, Abby.

>

> Some have said that they wished they had had the

> Surgery before they were Symptomatic, because

> they believe they would be better off now if they

> did.

>

> I wanted to give my input/opinions on this as well.

>

> There is no way to tell for certain if a person would

> be better off if they would have had Surgery eariler

> rather then later.........there is not a way for that to

> be evaluated.........atleast to my knowledge. There

> are educated guesses though, and to a reasonable

> degree of certaintiy. But that still leaves quite a

> bit up in the air.

>

> I had my first Detethering without Symptoms. I

> regret it, and it didn't need to be done ( I have

> been told this). But I was a child at the time and

> had no say so.

>

> I had my second Detethering due to Symptoms

> that were believed to be Tethered Cord related.

> I do regret it to an extent, but, something needed to be done, I was

> desperate. I was an Adult at this time.

>

> I ended up worse off right after both Detetherings.

> That's not said to scare you, but just to let you

> know how it turned out for me.

>

> Me

> Nebraska, USA

> mymocha@...

>

[Guest guest]

And then there are people like me - My TC symptoms were stable -

either I was born with neuro deficits from my lipomyelomeningocele, or

I developed them very early, so early my parents do not remember me

getting them - all the way until my mid-forties.

I had a cord release in 1997. Once I healed, my pain was better, my

bladder was better, my legs got stronger... for a couple of years.

Ever since then it's been a down hill slide, and doctors do not want a

repeat surgery because of the complications I had in that release.

Plus I get told that it's due to aging (love that one!)

Sorry to be so quiet here. My mother is dying of renal failure, she's

in a nursing home in a hospice program.

V,

PS - Dr. McClone told me that he thinks everyone with TC should always

have surgery as soon as possible, symptoms or none

[Guest guest]

Sorry it has taken me awhile to get back with you.

I was 11 when I had my first Detethering. I was

Asymptomatic. No, I do not have Lipomyelomenigocele.

I have Myelomeningocele........so no Lipoma was

involved. I don't know if a Dura Patch was used or not.

No, the sure, by far, was not a Success. I was

Paralyzed..........could not move my Legs at all.

Sensation was intact, though, along with Bowel

and Bladder. I was able to take very Baby Steps

with my when I left the Hospital, though.

I didn't get Symptoms of a Retethering until a

few Months before I had the Surgery.....I had my second Detethering at age

20.

Most do fair quite well with the Surgery. I seem

to just be one of the Oddities.

Retethering, to some extent or another, is pretty

much a given after this type of Surgery, but it

only matters if you develop Symptoms again.

And not everybody does.

Hope this helps.

Me

Nebraska, USA

mymocha@...

> How old were you when you had first surgery? What kind of problem do

> you/did you have? Was it a regular lipomyelomeningocele? Did it have

> the nerves entangled? Did it tunnel via the outer skin into the spinal

> cord, with vertebral and dural defect? What was the mass of the

> lipoma? Did they remove all the lipoma? Did they have to patch the

> dura with something? Was the surgery considered a success? What

> symptoms did you get after the surgery? How long after the surgery did

> you get the symptoms? When was your second surgery? All the ns I talk

> to seem very highly confident of the success of a surgery. .

> I am worried about just the surgery, and retethering. I am worried

> that if my daughter is of a kind who generates lot of scar tissue,

> then she could have a retether more complicated than the original

> tether - since the original tether is small, and her conus is in the

> right position.

>

[Guest guest]

,

I am sorry you have had such a bad experience with your surgeries in

your life dealing with tethered cord. Can you give a history of why

you had surgery and what type of tethering you have. I know you have

Chiari II so that means you have spina biffida. I know the chances of

a positive reovery from those are a lot slimmer than those of us with

filium issues. You seems so negative at times but I think it is due

to your different situation than the majority of us who do have filum

issues so it might help to fully understand your issues.

Charnel

>

> Some have said that they wished they had had the

> Surgery before they were Symptomatic, because

> they believe they would be better off now if they

> did.

>

> I wanted to give my input/opinions on this as well.

>

> There is no way to tell for certain if a person would

> be better off if they would have had Surgery eariler

> rather then later.........there is not a way for that to

> be evaluated.........atleast to my knowledge. There

> are educated guesses though, and to a reasonable

> degree of certaintiy. But that still leaves quite a

> bit up in the air.

>

> I had my first Detethering without Symptoms. I

> regret it, and it didn't need to be done ( I have

> been told this). But I was a child at the time and

> had no say so.

>

> I had my second Detethering due to Symptoms

> that were believed to be Tethered Cord related.

> I do regret it to an extent, but, something needed to be done, I was

> desperate. I was an Adult at this time.

>

> I ended up worse off right after both Detetherings.

> That's not said to scare you, but just to let you

> know how it turned out for me.

>

> Me

> Nebraska, USA

> mymocha@...

>

[Guest guest]

I had Surgery the first time due to results from an MRI.

That Test, which initially they wanted it to be a Myelogram,

was done just to see what was what as I hadn't had any

indepth Tests done in that area. There were no Symptoms.

Second Surgery was done based on Symptoms, that

were believe to be Tethered Cord related at that time

and Test Results.

I am Tethered by Scar Tissue.

Never heard such..........many people with Myelomenigocele

have had Tethered Cord Releases and have done

just fine. I haven't seen anybody else with a similar

experience to mine.........the person might be out there

though, just don't know of them.

There is negetivity surrounding my first Detethering.

And I've had my concerns backed up by other Dr.'s.

For the first few Years, before you were even here,

after my last Detethering, I know I was more negetive,

and that was in part due to unresolved issues surrounding

my first Detethering. Since then, I've been able to put

alot of it into perspective. I do say it like it is, because

that's reality, not negetivity.

Maybe that helps you better understand where I come

from.

Me

Nebraska, USA

mymocha@...

Can you give a history of why

> you had surgery and what type of tethering you have.

I know you have

> Chiari II so that means you have spina biffida.

I know the chances of

> a positive reovery from those are a lot slimmer than those of us with

> filium issues.

You seems so negative at times but I think it is due

> to your different situation than the majority of us who do have filum

> issues so it might help to fully understand your issues.

[Guest guest]

Brande,

I have been a member here for several years. I am aware that you have

had problems with your treatment. I have also been asked offlist by

people whom you have alarmed with your statments why I think you are

so negative about things sometimes. I did not mean to offend you and

tried to avoid doing so by asking you to help others understand your

unique situation. Obviously from your response I did offend you

ortherwise I would think that you could have answered the question

without the catty tone you used or at least have addressed such a

message to me offlist. I am sorry I was unaware simple courtesy was

beyond you.

What I was trying to get accross is the fact that your type of

tethered cord is much more difficult to treat, has a much lower sucess

rate, and a much higher retether rate than the majority of the people

in this group who have the more common tight filum variety of tethered

cord. The two conditions may be related via name but certainly do not

share much else in the way of causation or outcome. Yes you say it

like it is. For you. You do not bother to qualify your statments most

times nor do you acknowlege the difference between your type of

tethered cord or the fact that you are a rare case. I am an unusaul

case. As it turns out the first of many but at the time of my

treatment all by myself with no one else to ask what was going to

happen. I am only trying to help others in the same boat with chiari

and tethered cord of the plain old tight filum variety that can be

treated so easily and help them understand what is happening. I have

gone through it and have researched these issues thoroughly. I do my

best to keep up on the research and current treatments of my issues

and might know a few things about it. Just like you would know more

about chiari II and spina bifida as it affects your life.

Charnel

>

> I had Surgery the first time due to results from an MRI.

> That Test, which initially they wanted it to be a Myelogram,

> was done just to see what was what as I hadn't had any

> indepth Tests done in that area. There were no Symptoms.

>

> Second Surgery was done based on Symptoms, that

> were believe to be Tethered Cord related at that time

> and Test Results.

>

> I am Tethered by Scar Tissue.

>

> Never heard such..........many people with Myelomenigocele

> have had Tethered Cord Releases and have done

> just fine. I haven't seen anybody else with a similar

> experience to mine.........the person might be out there

> though, just don't know of them.

>

> There is negetivity surrounding my first Detethering.

> And I've had my concerns backed up by other Dr.'s.

> For the first few Years, before you were even here,

> after my last Detethering, I know I was more negetive,

> and that was in part due to unresolved issues surrounding

> my first Detethering. Since then, I've been able to put

> alot of it into perspective. I do say it like it is, because

> that's reality, not negetivity.

>

> Maybe that helps you better understand where I come

> from.

>

> Me

> Nebraska, USA

> mymocha@...

>

>

>

>

> Can you give a history of why

> > you had surgery and what type of tethering you have.

>

> I know you have

> > Chiari II so that means you have spina biffida.

> I know the chances of

> > a positive reovery from those are a lot slimmer than those of us with

> > filium issues.

>

> You seems so negative at times but I think it is due

> > to your different situation than the majority of us who do have filum

> > issues so it might help to fully understand your issues.

>