retethering after initial surgery

October 23, 2007

I am just awed that so many of us were told that adults do not retether.

Perhaps the pediatric neurosurgeons really don't know that they do?? That

sounds ridiculous. I just liked our NSG so much and he certainly held an

impressive position at an impressive hospital. When I questioned him, he said

adults get operated on for pain and that isn't the way to handle their pain.

Of

course, that isn't true at all and I knew it but I guess just chose not to

challenge it because why? At the moment, I wanted to believe him. Sigh.

Randee

In a message dated 10/23/2007 6:57:53 P.M. Eastern Daylight Time,

kmoulton@... writes:

I wish I could remember if the spinal cord nerves heal at the rate of a

half-inch or one inch (per month). I was told the same - it could take up to

six

months/year to see all the benefits/decline from a surgery.

Not surprisingly, I was told almost the same as you about the rate of

retethers after surgery. Not only was I told that the chance of me needing a

repeat

untethering were near nil - I was also told that adults don't retether.

Now that I look back on this conversation though (the same nsg that operated

on me after this conversation - my first untethering, he's also the same nsg

that untethered me four more times.) At any rate, I think he was really

using as a reference all the children he had operated on - he saw decline

happen

as the children grew. His theory was that because I was full height, I

wouldn't " symptomatically " retether. He was really quite surprised the first

time I

needed a repeat untethering.No

Kathy

----- Original Message -----

From: Brande

To: _tetheredspinalcord@tetheredspintet_

(mailto:tetheredspinalcord )

Sent: Tuesday, October 23, 2007 6:04 PM

Subject: Re: Post op appointment

Yes, they do. I would seriously consider getting a second opinion, if you

haven't already done so, if I were you!

I would say that could certainly be possible.

Brande

_mymocha@..._ (mailto:mymocha@...)

My question is... can adults re-tether? He said there is a 0%

chance.

He also said it could take up to 6 months to start feeling

the results of being " un-tethered " th

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

************************************** See what's new at http://www.aol.com

October 24, 2007

I wish I could remember if the spinal cord nerves heal at the rate of a

half-inch or one inch (per month). I was told the same - it could take up to

six months/year to see all the benefits/decline from a surgery.

Not surprisingly, I was told almost the same as you about the rate of retethers

after surgery. Not only was I told that the chance of me needing a repeat

untethering were near nil - I was also told that adults don't retether.

Now that I look back on this conversation though (the same nsg that operated on

me after this conversation - my first untethering, he's also the same nsg that

untethered me four more times.) At any rate, I think he was really using as a

reference all the children he had operated on - he saw decline happen as the

children grew. His theory was that because I was full height, I wouldn't

" symptomatically " retether. He was really quite surprised the first time I

needed a repeat untethering...

Kathy

Re: Post op appointment

Yes, they do. I would seriously consider getting a second opinion, if you

haven't already done so, if I were you!

I would say that could certainly be possible.

Brande

mymocha@...

My question is... can adults re-tether? He said there is a 0%

chance.

He also said it could take up to 6 months to start feeling

the results of being " un-tethered " .

October 24, 2007

,

well said. I think it should be malpractice for docs to tell their adult

patients that there is no risk of retether. That is certainly not informed

consent going in.

It is my understanding that anytime you have spinal surgery you are

automatically retethered, albeit (hopefully and ideally) asymptomatically

--- because the healing process will create scar tissue. There is nothing

anyone can do to stop your body from not forming scar tissue at the surgical

site. The idea is that they do the untether (or whatever cord surgery you

need to have) and you relieve the symptoms you have. And the new tether

that is created is asymptomatic. Now why some docs seem to think that new

tether will never, ever become symptomatic is far beyond me.

That is why i have such a problem understanding this " prophylactic

untethering " done to children and infants found to have TCS that are

asymptomatic. So the plan is to go in and swap one asymptomatic tether for

another? What if the tether they were born with would have never become

symptomatic to begin with? And as is seen in children who are untethered,

surgeons say that they will likely need another one when they hit a growth

spurt. Why not leave the tether they were born with and monitor them very

closely (EMG, urodynamics, gait studies,etc) for signs that the tether is

becoming symptomatic and untether them at that point? Then they've had only

one surgery instead of two? It also decreases the risk of developing a

latex allergy. Maybe there is another reason I don't know about, but I just

can't figure it out. I understand untethering a symptomatic child, but an

asymptomatic one? It just seems to be swapping same for same. There are

some mild tethers that are being " prophylactically untethered " that the

child may have been able to grow their entire life with without developing

symptoms. Or maybe only developing pain. Treating pain medically (when

possible) is certainly better than letting a surgeon stick his scalpel in

there where it doesn't belong and risk further damage and neurological

losses and future untetherings, arachnoiditis, hydrosyringomyelia, and all

the other things that go along with one untethering, let alone many.

This is just my opinion.

Jenn

>

> Adults absolutely retether. I think this might be

> news to a lot of doctors. I had a primary care doc who

> was very disbelieving when he saw the report that I

> had retethered. As Kathy said, it seems to be common

> belief that growth causes symptoms. I never had

> symptoms around my growth spurts. Of course, I never

> got much taller than 5 feet, but I did have a growth

> spurt or two, and never had a problem until after my

> first child was born.

>

> Surgery always causes scar tissue. Scar tissue can

> cause tethering, and can cause tethered cord syndrome

> if there is symptomatic tethering. There is a

> disconnect for me when doctors say adults don't

> retether. If A causes B, and B can cause C, then A

> certainly plays a role, right?

>

> --- DK Moulton <kmoulton@... <kmoulton%40triad.rr.com>> wrote:

>

> > I wish I could remember if the spinal cord nerves

> > heal at the rate of a half-inch or one inch (per

> > month). I was told the same - it could take up to

> > six months/year to see all the benefits/decline from

> > a surgery.

> >

> > Not surprisingly, I was told almost the same as you

> > about the rate of retethers after surgery. Not only

> > was I told that the chance of me needing a repeat

> > untethering were near nil - I was also told that

> > adults don't retether.

> >

> > Now that I look back on this conversation though

> > (the same nsg that operated on me after this

> > conversation - my first untethering, he's also the

> > same nsg that untethered me four more times.) At

> > any rate, I think he was really using as a reference

> > all the children he had operated on - he saw decline

> > happen as the children grew. His theory was that

> > because I was full height, I wouldn't

> > " symptomatically " retether. He was really quite

> > surprised the first time I needed a repeat

> > untethering...

> >

> > Kathy

> > Re: Post op appointment

> >

> > Yes, they do. I would seriously consider getting a

> > second opinion, if you

> > haven't already done so, if I were you!

> >

> > I would say that could certainly be possible.

> >

> > Brande

> > mymocha@... <mymocha%40charter.net>

> >

> > My question is... can adults re-tether? He said

> > there is a 0%

> > chance.

> >

> > He also said it could take up to 6 months to start

> > feeling

> > the results of being " un-tethered " .

> >

> > [Non-text portions of this message have been

> > removed]

> >

>

> Check out my blog: http://princessmatildalovestostamp.blogspot.com

>

> __________________________________________________

>

October 24, 2007

WOW!!!!!!!!!!!!

This is and I'm surprised to hear that ADULTS retether!!

I have TC and Chiari Malformation and EDS. I'm concerned that IF I do this

surgery that I wi;; need the surgery AGAIN at some point b/c of the EDS

issues!!!

Weaver wrote:

Adults absolutely retether. I think this might be

news to a lot of doctors. I had a primary care doc who

was very disbelieving when he saw the report that I

had retethered. As Kathy said, it seems to be common

belief that growth causes symptoms. I never had

symptoms around my growth spurts. Of course, I never

got much taller than 5 feet, but I did have a growth

spurt or two, and never had a problem until after my

first child was born.

Surgery always causes scar tissue. Scar tissue can

cause tethering, and can cause tethered cord syndrome

if there is symptomatic tethering. There is a

disconnect for me when doctors say adults don't

retether. If A causes B, and B can cause C, then A

certainly plays a role, right?

--- DK Moulton wrote:

> I wish I could remember if the spinal cord nerves

> heal at the rate of a half-inch or one inch (per

> month). I was told the same - it could take up to

> six months/year to see all the benefits/decline from

> a surgery.

>

> Not surprisingly, I was told almost the same as you

> about the rate of retethers after surgery. Not only

> was I told that the chance of me needing a repeat

> untethering were near nil - I was also told that

> adults don't retether.

>

> Now that I look back on this conversation though

> (the same nsg that operated on me after this

> conversation - my first untethering, he's also the

> same nsg that untethered me four more times.) At

> any rate, I think he was really using as a reference

> all the children he had operated on - he saw decline

> happen as the children grew. His theory was that

> because I was full height, I wouldn't

> " symptomatically " retether. He was really quite

> surprised the first time I needed a repeat

> untethering...

>

> Kathy

> Re: Post op appointment

>

> Yes, they do. I would seriously consider getting a

> second opinion, if you

> haven't already done so, if I were you!

>

> I would say that could certainly be possible.

>

> Brande

> mymocha@...

>

> My question is... can adults re-tether? He said

> there is a 0%

> chance.

>

> He also said it could take up to 6 months to start

> feeling

> the results of being " un-tethered " .

>

> [Non-text portions of this message have been

> removed]

>

Check out my blog: http://princessmatildalovestostamp.blogspot.com

__________________________________________________

October 24, 2007

Randee, the nsg certainly might have had a point. I

know as I look back to my last back surgery (and I

mean my very last back surgery) nine years ago, I'm

not sure that it was worth it just to try to stop the

pain. It didn't stop the pain long enough for me to go

through it again. My first surgery, I lost feeling

and within a week was in surgery. I got it all back,

and was good for 8 years or so. The pain I had for a

year before my second surgery and the pain came back

in full force, actually worse, less than six months

later. I lost my bladder before my second surgery,

longer than a year before, and I didn't get that

function back at all. I did stop the atrophy of my

muscles for a long time. They're just now getting

back to the mushy stage, nine years later. But for

just pain, I think there might be better ways to

handle it than jumping into surgery, unless it's done

quickly after symptoms start.

Just my opinion, but I wouldn't have surgery again for

the pain alone. I'd rather try anything else first,

because I don't think it's necessarily a long term

treatment for pain that's been hanging around for

awhile.

--- Randeejae@... wrote:

>

> I am just awed that so many of us were told that

> adults do not retether.

> Perhaps the pediatric neurosurgeons really don't

> know that they do?? That

> sounds ridiculous. I just liked our NSG so much and

> he certainly held an

> impressive position at an impressive hospital. When

> I questioned him, he said

> adults get operated on for pain and that isn't the

> way to handle their pain. Of

> course, that isn't true at all and I knew it but I

> guess just chose not to

> challenge it because why? At the moment, I wanted

> to believe him. Sigh.

>

> Randee

>

> In a message dated 10/23/2007 6:57:53 P.M. Eastern

> Daylight Time,

> kmoulton@... writes:

>

> I wish I could remember if the spinal cord nerves

> heal at the rate of a

> half-inch or one inch (per month). I was told the

> same - it could take up to six

> months/year to see all the benefits/decline from a

> surgery.

>

> Not surprisingly, I was told almost the same as you

> about the rate of

> retethers after surgery. Not only was I told that

> the chance of me needing a repeat

> untethering were near nil - I was also told that

> adults don't retether.

>

> Now that I look back on this conversation though

> (the same nsg that operated

> on me after this conversation - my first

> untethering, he's also the same nsg

> that untethered me four more times.) At any rate, I

> think he was really

> using as a reference all the children he had

> operated on - he saw decline happen

> as the children grew. His theory was that because I

> was full height, I

> wouldn't " symptomatically " retether. He was really

> quite surprised the first time I

> needed a repeat untethering.No

>

> Kathy

> ----- Original Message -----

> From: Brande

> To: _tetheredspinalcord@tetheredspintet_

> (mailto:tetheredspinalcord )

> Sent: Tuesday, October 23, 2007 6:04 PM

> Subject: Re: Post op appointment

>

> Yes, they do. I would seriously consider getting a

> second opinion, if you

> haven't already done so, if I were you!

>

> I would say that could certainly be possible.

>

> Brande

> _mymocha@..._ (mailto:mymocha@...)

>

> My question is... can adults re-tether? He said

> there is a 0%

> chance.

>

> He also said it could take up to 6 months to start

> feeling

> the results of being " un-tethered " th

>

> [Non-text portions of this message have been

> removed]

>

> ************************************** See what's

> new at http://www.aol.com

>

> [Non-text portions of this message have been

> removed]

>

Check out my blog: http://princessmatildalovestostamp.blogspot.com

__________________________________________________

October 30, 2007

Jenn and ,

I lurk on this site quite a bit and usually don't respond unless I'm

truly at the end of my rope however I decided to reply to this post

just to add my two cents. Jenn's statement of 'I don't know why they

choose to untether an asymptomatic infant or child' kind of swapping

one tether for the hopes of another asymptomatic tether. I was a

parent who chose to untether my asymptomatic 4 month old. I knew

going in that she would be 'retethered' due to scar tissue so I

wasn't naive in that aspect but chose to do it because infants go

through so many growth spurts and that if detoration in mobility

happens due to the strain on the cord there is no way to reverse

that. Also, the strain from the tether could create irreversable

damage to the bladder and bowels. At 4 months there is no way to

tell if there is already bladder and bowel control problems because

they aren't potty trained. There is also no way of truly knowing if

there are mobility problems underlying already due to the tether. So

truly a infant that seems asymptomatic may not really be...simply the

baby is too little to have the outward signs. The release (as I

rationalized for my own sanity) is buying us the time to get her past

some big growth spurts until such time as she's talking, walking and

potty trained. Then we can truly monitor the situation.

I guess in a way I'm defending our decision for the release but maybe

opening up the issue for further discussion. I have really learned

so much from these discussions and everone's openness to different

points of view. Sorry to butt in, just my two cents I hope it made a

little sense.

Jozann, Mom to Jack 5 and 18 months (cord release at 4

months with a particial lipoma removal)

> >

> > > I wish I could remember if the spinal cord nerves

> > > heal at the rate of a half-inch or one inch (per

> > > month). I was told the same - it could take up to

> > > six months/year to see all the benefits/decline from

> > > a surgery.

> > >

> > > Not surprisingly, I was told almost the same as you

> > > about the rate of retethers after surgery. Not only

> > > was I told that the chance of me needing a repeat

> > > untethering were near nil - I was also told that

> > > adults don't retether.

> > >

> > > Now that I look back on this conversation though

> > > (the same nsg that operated on me after this

> > > conversation - my first untethering, he's also the

> > > same nsg that untethered me four more times.) At

> > > any rate, I think he was really using as a reference

> > > all the children he had operated on - he saw decline

> > > happen as the children grew. His theory was that

> > > because I was full height, I wouldn't

> > > " symptomatically " retether. He was really quite

> > > surprised the first time I needed a repeat

> > > untethering...

> > >

> > > Kathy

> > > Re: Post op appointment

> > >

> > > Yes, they do. I would seriously consider getting a

> > > second opinion, if you

> > > haven't already done so, if I were you!

> > >

> > > I would say that could certainly be possible.

> > >

> > > Brande

> > > mymocha@... <mymocha%40charter.net>

> > >

> > > My question is... can adults re-tether? He said

> > > there is a 0%

> > > chance.

> > >

> > > He also said it could take up to 6 months to start

> > > feeling

> > > the results of being " un-tethered " .

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> >

> > Check out my blog: http://princessmatildalovestostamp.blogspot.com

> >

> > __________________________________________________

> >

October 30, 2007

Hey Gang...Not to worry please! The MDs don't agree so why should anyone

else? We all know (hopefully) that this is a discussion group..not a

professional group and we need to take our questions to our physicians and try

to

sort it all out. I personally appreciate the parents and the adults since my

" child " has gone from child to almost adult while I have been watching the

support group and it is very very helpful and interesting getting the total

perspective! Thanks to all and keep your opinions flowing is my vote! Randee

In a message dated 10/30/2007 4:16:21 P.M. Eastern Daylight Time,

mzw4@... writes:

I would also add that I don't know what a parent of a

child with this condition learns or hears from

doctors. I didn't make the comment about untethering

asymptomatic children because I won't publicly voice

my opinion on something I know very, very little

about. I know about adults with TCS. I know about

scarring in adults with TCS. I don't know what a nsg

knows about children with this condition, and I

wouldn't be comfortable stating what I think about

parents untethering their asymptomatic children,

either for or against. It would be an uneducated

comment at best, and at worst, it might sway someone

the wrong way. I don't want to be responsible for

that.

I also would never want to put any parent on the

defensive for making a decision that I honestly would

never want to make. Kathy said it better than I

could, about the difference between children and

adults (kids aren't just smaller versions of us), and

I'm sorry if you felt like I was calling your choice

into question. I really never intended to do that, and

I'm not real happy with myself for doing so, even if

unintentionally.

--- DK Moulton <_kmoulton@..._ (mailto:kmoulton@...) >

wrote:

> Hi Jozann,

>

> I'm not defending Jenn's comment; however, this is a

> good example of why when and I began the

> list, we had made the decision to try to keep the

> focus with adults and have a separate referral for

> parents. There is nothing wrong with either Jenn's

> or your comments or decisions or thinking.

>

> Re: retethering after initial

> surgery

>

> Jenn and ,

> I lurk on this site quite a bit and usually don't

> respond unless I'm

> truly at the end of my rope however I decided to

> reply to this post

> just to add my two cents. Jenn's statement of 'I

> don't know why they

> choose to untether an asymptomatic infant or

> child' kind of swapping

> one tether for the hopes of another asymptomatic

> tether. I was a

> parent who chose to untether my asymptomatic 4

> month old. I knew

> going in that she would be 'retethered' due to

> scar tissue so I

> wasn't naive in that aspect but chose to do it

> because infants go

> through so many growth spurts and that if

> detoration in mobility

> happens due to the strain on the cord there is no

> way to reverse

> that. Also, the strain from the tether could

> create irreversable

> damage to the bladder and bowels. At 4 months

> there is no way to

> tell if there is already bladder and bowel control

> problems because

> they aren't potty trained. There is also no way of

> truly knowing if

> there are mobility problems underlying already due

> to the tether. So

> truly a infant that seems asymptomatic may not

> really be...simply the

> baby is too little to have the outward signs. The

> release (as I

> rationalized for my own sanity) is buying us the

> time to get her past

> some big growth spurts until such time as she's

> talking, walking and

> potty trained. Then we can truly monitor the

> situation.

> I guess in a way I'm defending our decision for

> the release but maybe

> opening up the issue for further discussion. I

> have really learned

> so much from these discussions and everone's

> openness to different

> points of view. Sorry to butt in, just my two

> cents I hope it made a

> little sense.

> Jozann, Mom to Jack 5 and 18 months (cord

> release at 4

> months with a particial lipoma removal)

>

Check out my blog: _http://princessmatihttp://princessmhttp://prhtt_

(http://princessmatildalovestostamp.blogspot.com/)

__________________________________________________

Do You Yahoo!?

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October 30, 2007

I guess I can echo Jozann's sentiment, though our dd (6yo at time of

detether) wasn't entirely asymptomatic. She suffered severe constipation,

bad enough to require hospitalization to flush her bowels out. At the time,

I didn't know much about retethering, though the doc assured me that it

was highly unlikely. Now, after reading so much on this board, I'm not so

sure about that. Given what I know now, I don't know if I would have agreed

to it. Our main concern was that her bowel problems weren't going to get

any better, and in time she may have lost other function as well. Given what

I know now, I don't know if I would have agreed to it. So it goes. The NS

wants to do periodic MRI's (which, I suppose now, based on what I know,

is to check for retethering, although he assured me that was highly

unlikely) - a one-year follow up early next year, then every two years after

that, indefinitely. Of course, we'll be monitoring for other symptoms as well.

Jon

Re: Post op appointment

> > >

> > > Yes, they do. I would seriously consider getting a

> > > second opinion, if you

> > > haven't already done so, if I were you!

> > >

> > > I would say that could certainly be possible.

> > >

> > > Brande

> > > mymocha@... <mymocha%40charter.net>

> > >

> > > My question is... can adults re-tether? He said

> > > there is a 0%

> > > chance.

> > >

> > > He also said it could take up to 6 months to start

> > > feeling

> > > the results of being " un-tethered " .

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> >

> > Check out my blog: http://princessmatildalovestostamp.blogspot.com

> >

> > __________________________________________________

> >

October 30, 2007

Hi Jozann,

I'm not defending Jenn's comment; however, this is a good example of why when

and I began the list, we had made the decision to try to keep the focus

with adults and have a separate referral for parents. There is nothing wrong

with either Jenn's or your comments or decisions or thinking.

This is a just a good example of infants' surgery vs. adults that are diagnosed

as adults. Adults and infants/children face such different situations when the

initial and resulting retether surgery decisions are presented. As a parent you

face trying to avoid future neuro damage. As adults, we face hopefully undoing

damage and preventing future damage. Also, as adults, we've done damage to our

cords that no one can see and no one can predict what that damage will do to us

in one month or ten years. It's such a different " animal " and one can't compare

initial untetherings in infants to initial untetherings as adults. Infants have

such a better chance as they haven't had the years and years of movements that

do damage that doesn't show up right away.

However, I can see Jenn's point - after an initial untethering, more than likely

there's the retethering. But, what you hope and pray for as a parent is that

the retether won't make the spinal cord as tight as the initial tether (IT) and

that when your child does move and bend and stretch, the cord's tightness won't

be such that damage would be done when compared to how tight it was with the IT.

Very difficult situations for infants/parents/adults.

To go back to when and I and Rick and initially started the Yahoo

list - I want to premise this by saying it's not that we didn't want parents on

the list - it's just that when you have adults who are diagnosed as adults,

answering and reading posts from parents, they tend to compare to what they've

gone through as children (undiagnosed most times) and vice-versa, parents

wondering if what they read from adults who are diagnosed as adults with the IT,

is what they're child will deal with when grown - and there is no comparison

either way. This disease/diagnosis is so complex and so individualized that

even if you have two people with the same exact diagnosis, same age at

diagnosis, same surgery and same date of surgery, you will still more than

likely have two different outcomes - even if similar, there will still be those

" small tweaks " within the spinal cord dependent upon life situations earlier

that will make all the difference in the outcome - plus add in how much blood

flow one person had, how much lack of oxygen another had in the spinal cord and

all the other small anomalies this condition can have, there is never a

comparison that is solid.

Again, not defending Jenn's comment, but hopefully explaining where it was

coming from and starting an understanding. And to and Darlene - not trying

to jump in and go back to mgt. at all - just a post from someone who saw all

this in the beginning with Darlene's list years ago and trying to explain how

difficult a list can be with such diverse populations on it.

Hope this makes sense - should probably wait to write when I'm not in pain from

over doing things...

Kathy

Re: Post op appointment

> > >

> > > Yes, they do. I would seriously consider getting a

> > > second opinion, if you

> > > haven't already done so, if I were you!

> > >

> > > I would say that could certainly be possible.

> > >

> > > Brande

> > > mymocha@... <mymocha%40charter.net>

> > >

> > > My question is... can adults re-tether? He said

> > > there is a 0%

> > > chance.

> > >

> > > He also said it could take up to 6 months to start

> > > feeling

> > > the results of being " un-tethered " .

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> >

> > Check out my blog: http://princessmatildalovestostamp.blogspot.com

> >

> > __________________________________________________

> >

October 30, 2007

I would also add that I don't know what a parent of a

child with this condition learns or hears from

doctors. I didn't make the comment about untethering

asymptomatic children because I won't publicly voice

my opinion on something I know very, very little

about. I know about adults with TCS. I know about

scarring in adults with TCS. I don't know what a nsg

knows about children with this condition, and I

wouldn't be comfortable stating what I think about

parents untethering their asymptomatic children,

either for or against. It would be an uneducated

comment at best, and at worst, it might sway someone

the wrong way. I don't want to be responsible for

that.

I also would never want to put any parent on the

defensive for making a decision that I honestly would

never want to make. Kathy said it better than I

could, about the difference between children and

adults (kids aren't just smaller versions of us), and

I'm sorry if you felt like I was calling your choice

into question. I really never intended to do that, and

I'm not real happy with myself for doing so, even if

unintentionally.

--- DK Moulton wrote:

> Hi Jozann,

>

> I'm not defending Jenn's comment; however, this is a

> good example of why when and I began the

> list, we had made the decision to try to keep the

> focus with adults and have a separate referral for

> parents. There is nothing wrong with either Jenn's

> or your comments or decisions or thinking.

>

> Re: retethering after initial

> surgery

>

> Jenn and ,

> I lurk on this site quite a bit and usually don't

> respond unless I'm

> truly at the end of my rope however I decided to

> reply to this post

> just to add my two cents. Jenn's statement of 'I

> don't know why they

> choose to untether an asymptomatic infant or

> child' kind of swapping

> one tether for the hopes of another asymptomatic

> tether. I was a

> parent who chose to untether my asymptomatic 4

> month old. I knew

> going in that she would be 'retethered' due to

> scar tissue so I

> wasn't naive in that aspect but chose to do it

> because infants go

> through so many growth spurts and that if

> detoration in mobility

> happens due to the strain on the cord there is no

> way to reverse

> that. Also, the strain from the tether could

> create irreversable

> damage to the bladder and bowels. At 4 months

> there is no way to

> tell if there is already bladder and bowel control

> problems because

> they aren't potty trained. There is also no way of

> truly knowing if

> there are mobility problems underlying already due

> to the tether. So

> truly a infant that seems asymptomatic may not

> really be...simply the

> baby is too little to have the outward signs. The

> release (as I

> rationalized for my own sanity) is buying us the

> time to get her past

> some big growth spurts until such time as she's

> talking, walking and

> potty trained. Then we can truly monitor the

> situation.

> I guess in a way I'm defending our decision for

> the release but maybe

> opening up the issue for further discussion. I

> have really learned

> so much from these discussions and everone's

> openness to different

> points of view. Sorry to butt in, just my two

> cents I hope it made a

> little sense.

> Jozann, Mom to Jack 5 and 18 months (cord

> release at 4

> months with a particial lipoma removal)

>

Check out my blog: http://princessmatildalovestostamp.blogspot.com

__________________________________________________

October 31, 2007

Jozann,

Please don't feel you need to defend your decision to untether your little

one. Every single one of us who made the decision for either ourselves or

our kids had to make the descision and it is a very personal one. Some of

us would go back and do things differently, others are quite happy with the

decisions we made. Either way, all of us made the best decisions we could

at the time with the information we had. You can't look back and guess at

that point. You have to put a period and move forward, making the best.

Maybe I could have used a different word, but as I said it, I don't know why

they (meaning the docs - not the parents, afterall, parents only make

decisions based on what docs tell them) choose to untether an asymptomatic

child... blah, blah..... you already repeated it. Perhaps I could have

chose a better word and said that I didn't understand it. But either way,

it ultimately says the same thing and is just semantics. I didn't know

because as best I could rationalize, it was like swapping one aymptomatic

tether for another (hence the " adult TCS " perspective Kathy spoke about).

But I'm glad you spoke up. Now I can see why a doc might make that

recommendation, particularly before a child is able to walk, when you can't

see the neurological changes in his/her walking (with potty training a

little ways off). Anyway, thanks for explaining the other side. I never

understood why a doc would recommend such a thing -- you're the first person

to explain it to me.

I wonder if they can do EMGs and urodynamics and all the adult tests on

infants (pre-walking). So that a parent might be able to avoid surgery (and

the retether cycle) by using results from the tests along with watching for

changes in diapers or spasms in legs. And perhaps doing things at closer

intervals. Anyway, just a thought. Maybe Jozann, your doc explained why

this wasn't an option -- or anyone else.

Thanks again for explaining it. I hope does beautifully and never

has a problem with developing a symptomatic retether for the rest of her

life.

Jenn

>

> Jenn and ,

> I lurk on this site quite a bit and usually don't respond unless I'm

> truly at the end of my rope however I decided to reply to this post

> just to add my two cents. Jenn's statement of 'I don't know why they

> choose to untether an asymptomatic infant or child' kind of swapping

> one tether for the hopes of another asymptomatic tether. I was a

> parent who chose to untether my asymptomatic 4 month old. I knew

> going in that she would be 'retethered' due to scar tissue so I

> wasn't naive in that aspect but chose to do it because infants go

> through so many growth spurts and that if detoration in mobility

> happens due to the strain on the cord there is no way to reverse

> that. Also, the strain from the tether could create irreversable

> damage to the bladder and bowels. At 4 months there is no way to

> tell if there is already bladder and bowel control problems because

> they aren't potty trained. There is also no way of truly knowing if

> there are mobility problems underlying already due to the tether. So

> truly a infant that seems asymptomatic may not really be...simply the

> baby is too little to have the outward signs. The release (as I

> rationalized for my own sanity) is buying us the time to get her past

> some big growth spurts until such time as she's talking, walking and

> potty trained. Then we can truly monitor the situation.

> I guess in a way I'm defending our decision for the release but maybe

> opening up the issue for further discussion. I have really learned

> so much from these discussions and everone's openness to different

> points of view. Sorry to butt in, just my two cents I hope it made a

> little sense.

> Jozann, Mom to Jack 5 and 18 months (cord release at 4

> months with a particial lipoma removal)

>

> > >

> > > > I wish I could remember if the spinal cord nerves

> > > > heal at the rate of a half-inch or one inch (per

> > > > month). I was told the same - it could take up to

> > > > six months/year to see all the benefits/decline from

> > > > a surgery.

> > > >

> > > > Not surprisingly, I was told almost the same as you

> > > > about the rate of retethers after surgery. Not only

> > > > was I told that the chance of me needing a repeat

> > > > untethering were near nil - I was also told that

> > > > adults don't retether.

> > > >

> > > > Now that I look back on this conversation though

> > > > (the same nsg that operated on me after this

> > > > conversation - my first untethering, he's also the

> > > > same nsg that untethered me four more times.) At

> > > > any rate, I think he was really using as a reference

> > > > all the children he had operated on - he saw decline

> > > > happen as the children grew. His theory was that

> > > > because I was full height, I wouldn't

> > > > " symptomatically " retether. He was really quite

> > > > surprised the first time I needed a repeat

> > > > untethering...

> > > >

> > > > Kathy

> > > > Re: Post op appointment

> > > >

> > > > Yes, they do. I would seriously consider getting a

> > > > second opinion, if you

> > > > haven't already done so, if I were you!

> > > >

> > > > I would say that could certainly be possible.

> > > >

> > > > Brande

> > > > mymocha@... <mymocha%40charter.net>

> > > >

> > > > My question is... can adults re-tether? He said

> > > > there is a 0%

> > > > chance.

> > > >

> > > > He also said it could take up to 6 months to start

> > > > feeling

> > > > the results of being " un-tethered " .

> > > >

> > > > [Non-text portions of this message have been

> > > > removed]

> > > >

> > >

> > > Check out my blog: http://princessmatildalovestostamp.blogspot.com

> > >

> > > __________________________________________________

> > >

November 1, 2007

Hi All,

It has been a long time since I have posted. Sorry bout that, a lot has

changed in the past year. I graduated from college, I got married, I

moved, to name a few. I show 590 unread messages in my tsc folder, when

time permits I randomly select some to read. Things will slow down this

winter and I will catch up.

I have to disagree with 's comment " Adults absolutely retether

" . Most probably do, it has been nearly 10 years since my surgery and I

have not retethered nor do I have any symptoms of retethering. I have

reoccurring issues with my toes, last summer my physiatrist (sp? rehab

doctor) ordered a mri just to confirm there were no new issues in my

spinal column that might be the cause of my toe problems. The mri showed

I was not retethered and that there was very little scar tissue.

Other issues I recently experienced was last August I had severe right

shoulder pain and numbness of the fingers in my right hand. Again a mri

was ordered and i was one of the first to use their new 3D color

machine. The factory rep was there showing the tech how to use it. There

was a very nice and clear picture of a ruptured disk at C7 pushing right

on the nerve. 2 weeks ago I finished my 3rd PT treatment which consisted

of some relaxation and machine traction of the neck. I have no more pain

and no numbness. This is/was caused by overcompensation of the upper

body for weakness in the lower body. Now I make sure I sit, stand, and

lie down properly.

Kathy - I heard that spinal cord nerves grow about an inch a year. In 10

years the numbness level on my right leg measured on the outside thigh

has gone down about 4 inches. IE where the touch numbness starts is 4

inches down from where it was in 1997. My legs were about 50% numb to

the touch, I would say they are about 35% now - just guessing.

I will be back.....

Rick

> >

> > >

> > > Adults absolutely retether. I think this might be

> > > news to a lot of doctors. I had a primary care doc who

> > > was very disbelieving when he saw the report that I

>

> > > --- DK Moulton wrote:

> > >

> > > > I wish I could remember if the spinal cord nerves

> > > > heal at the rate of a half-inch or one inch (per

> > > > month). I was told the same - it could take up to

> > > > six months/year to see all the benefits/decline from

> > > > a surgery.

>

November 1, 2007

Thanks, Jozann18! You sure speak for me but far more eloquently! randee

In a message dated 11/1/2007 12:18:34 P.M. Eastern Daylight Time,

jozann18@... writes:

Good morning all, I'm not defending my choice at all, as someone mentioned

already, this is a forum to discuss. All I know is what my doctor tells me,

I've learned from this group, other websites, other support groups and my gutt

instinct. I have come to realize just how different every diagnosis and

outcome is and truly how complex of a 'condition' it is. I appreciate the

feedback

and the inclusion on this site. I know that it has been mentioned that the

group should be separate since the challenges of adults with TCS and

infants/children can be quite diverse and I respect why that consideration has

been

mentioned. I agree the challenges are very different, I as a parent will

benefit from having a deeper understanding of what may lay ahead for my

daughter

however the reverse may not be so for the adults...not much to learn about

early childhood since from what I know...don't get to be kids again darn it!

Adults probably get little from the infant/child discussions

and that is truly why I try to respond very little (I did at first only

because I didn't know any better and frankly it was all about 'me' at the

time...I was so freaked out and could only see the world crashing around my

family).

Now that we've settled into this and come to terms with everything, I have a

deep respect for everyone faced with this condition.

You never have to worry about protecting my feelings or second guessing what

you post...I consider this a learning discussion forum and enjoy the various

perspectives going on. If we all agreed there wouldn't be much to learn or

question. And it helps me ask the right questions when we have check ups with

the ns or peditrician.

Really my only intention was just to add some insight as to why a parent and

also a ns, that I obviously trust with my daughter's life, make the

decisions that they do. Do I question the quick 'scalpel trigger' some ns MIGHT

have?

Sure...I remember so clearly thinking " I'm handing over my perfect child and

I'm getting back a handicapped one why on earth am I doing this to her? " But

I put my faith in the research I did, the communications with individuals in

this group, my trust in her doctors, the second and third opinions and went

through with it. Everytime I look at her back and still question if I did the

right thing, I'm sure every parent and even the adults who've found little

relief following their surgeries, question that.

I thank all of you for welcoming us parents, who are so distraught with

having to much such decisions on someone else behalf, and praying to whatever

God

we believe in that we did the right thing by them. Possibly my eagerness to

defend is my coping mechanism that allows me to get through this everyday.

Sorry but this is the best group/most active and informative discussion group

there is so I'm having a hard time breaking ties. Hopefully the banter back

and forth has been a bit helpful to someone out there in virtual world.

Oh and as for Sammy, she's 14 months post-op and 18 months old...she tackles

like a linebacker, rides the dog, climbs everything in her path and runs

from me faster than any track star...sure we aren't naive and realize this

might

not always be the case for her but it is for today and that's all we have

really!

Thanks everyone! J

__________________________________________________

Do You Yahoo!?

Tired of spam? Yahoo! Mail has the best spam protection around

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November 1, 2007

Good morning all, I'm not defending my choice at all, as someone mentioned

already, this is a forum to discuss. All I know is what my doctor tells me,

I've learned from this group, other websites, other support groups and my gutt

instinct. I have come to realize just how different every diagnosis and outcome

is and truly how complex of a 'condition' it is. I appreciate the feedback and

the inclusion on this site. I know that it has been mentioned that the group

should be separate since the challenges of adults with TCS and infants/children

can be quite diverse and I respect why that consideration has been mentioned. I

agree the challenges are very different, I as a parent will benefit from having

a deeper understanding of what may lay ahead for my daughter however the reverse

may not be so for the adults...not much to learn about early childhood since

from what I know...don't get to be kids again darn it! Adults probably get

little from the infant/child discussions

and that is truly why I try to respond very little (I did at first only because

I didn't know any better and frankly it was all about 'me' at the time...I was

so freaked out and could only see the world crashing around my family). Now

that we've settled into this and come to terms with everything, I have a deep

respect for everyone faced with this condition.

You never have to worry about protecting my feelings or second guessing what

you post...I consider this a learning discussion forum and enjoy the various

perspectives going on. If we all agreed there wouldn't be much to learn or

question. And it helps me ask the right questions when we have check ups with

the ns or peditrician.

Really my only intention was just to add some insight as to why a parent and

also a ns, that I obviously trust with my daughter's life, make the decisions

that they do. Do I question the quick 'scalpel trigger' some ns MIGHT have?

Sure...I remember so clearly thinking " I'm handing over my perfect child and I'm

getting back a handicapped one why on earth am I doing this to her? " But I put

my faith in the research I did, the communications with individuals in this

group, my trust in her doctors, the second and third opinions and went through

with it. Everytime I look at her back and still question if I did the right

thing, I'm sure every parent and even the adults who've found little relief

following their surgeries, question that.

I thank all of you for welcoming us parents, who are so distraught with having

to much such decisions on someone else behalf, and praying to whatever God we

believe in that we did the right thing by them. Possibly my eagerness to defend

is my coping mechanism that allows me to get through this everyday. Sorry but

this is the best group/most active and informative discussion group there is so

I'm having a hard time breaking ties. Hopefully the banter back and forth has

been a bit helpful to someone out there in virtual world.

Oh and as for Sammy, she's 14 months post-op and 18 months old...she tackles

like a linebacker, rides the dog, climbs everything in her path and runs from me

faster than any track star...sure we aren't naive and realize this might not

always be the case for her but it is for today and that's all we have really!

Thanks everyone! J

__________________________________________________

November 1, 2007

Well, apparently we never forced a separation, but I

know, for me (and I only speak for me), that I don't

want to scare parents. It's scary enough having a

child with this diagnosis. It can't be good to come

to a list and hear horror stories.

But I also know that being here will prepare you and

will help prepare your child with what might

eventually happen. I think that is very beneficial

for you and your child, and probably is helping shape

the future of neurosurgery to have very aware parents

questioning these standard practices.

However, going back to the " I don't want to scare

parents " . We, as adults, need to be given some room

to discuss very scary situations. We use this list to

get feedback and information, but also just to vent. I

didn't want the adults with TCS to feel like they have

to keep quiet to keep from scaring the parents too

much (of course, I'm not a list owner anymore, so the

rules could change or not). As long as everyone

realizes that my problems aren't necessarily a given

for the condition, and that even if six of us are

talking about a bladder control issue, that doesn't

mean every person with TCS will eventually have that

issue. It's just such a balancing act. You know, for

me, as a parent who happens to have TCS, I know how

thankful I am that it's me dealing with this stuff and

not my kids. I don't want to scare anyone with the

stories I could tell, but most especially, I don't

want to give parents a gloomy picture of a future that

might never happen.

Did that make sense at all?

And I do think we (as adults) get something back from

having parents on this list. I think the movement in

this disorder happens for kids long before it ever

gets to the adults, so who knows when we'll see some

new breakthrough that benefits adults because a

pediatric nsg had an epiphany? If we can help parents

ask better questions so those changes occur more

quickly, we are getting something very valuable from

it as well. It isn't a one way street, and I know I

never viewed the parents as just being on the list and

taking from it. I see them as giving back too.

--- Randeejae@... wrote:

>

> Thanks, Jozann18! You sure speak for me but far

> more eloquently! randee

>

> ht Time,

> jozann18@... writes:

>

> Good morning all, I'm not defending my choice at

> all, as someone mentioned

> already, this is a forum to discuss. All I know is

> what my doctor tells me,

> I've learned from this group, other websites, other

> support groups and my gutt

> instinct. I have come to realize just how different

> every diagnosis and

> outcome is and truly how complex of a 'condition' it

> is. I appreciate the feedback

> and the inclusion on this site. I know that it has

> been mentioned that the

> group should be separate since the challenges of

> adults with TCS and

> infants/children can be quite diverse and I respect

> why that consideration has been

> mentioned. I agree the challenges are very

> different, I as a parent will

> benefit from having a deeper understanding of what

> may lay ahead for my daughter

> however the reverse may not be so for the

> adults...not much to learn about

> early childhood since from what I know...don't get

> to be kids again darn it!

>

> You never have to worry about protecting my

> feelings or second guessing what

> you post...I consider this a learning discussion

> forum and enjoy the various

> perspectives going on. If we all agreed there

> wouldn't be much to learn or

> question. And it helps me ask the right questions

> when we have check ups with

> the ns or peditrician.

> Really my only intention was just to add some

> insight as to why a parent and

> also a ns, that I obviously trust with my daughter's

> life, make the

> decisions that they do.

> Thanks everyone! J

>

> __________________________________________________

> Do You Yahoo!?

> Tired of spam? Yahoo! Mail has the best spam

> protection around

> _http://mail.http://ma_ (http://mail.yahoo.com/)

>

> [Non-text portions of this message have been

> removed]

>

> ************************************** See what's

> new at http://www.aol.com

>

> [Non-text portions of this message have been

> removed]

>

Check out my blog: http://princessmatildalovestostamp.blogspot.com

__________________________________________________

November 1, 2007

That reminded me - the new pain doctor I'm seeing made the comment at

my last appointment that sometimes they will see new scar tissue

developing around nerve roots in the area of cord surgery. I've not

seen anything in the medical journals about that.

Talking about retether is difficult because the same word can apply to

two different situations - a physical retether ( the cord is attached

a little or a lot in the scar tissue formed when the dura was opened)

and a symptomatic retether (new, increased, or returning symptoms of

TCS).

As a general rule, the smaller the incision in the dura, the less

likely is a symptomatic retether. Hence, fatty filum tethers are less

likely to 'retether' than lmc tethers.

V

>enough to not have retethered? (As far as I know, you retether

shortly >after surgery - so if you aren't retethered yet, I don't see

why you >would ever be - do you?)

November 2, 2007

__________________________________________________

November 13, 2007

Connie,

I think this could be very interesting. I have a couple questions.

- Why just focus on retethers who had fatty filum as their initial tether?

I know that the fatty filum type tether is supposed to be the " easiest " to

untether and the least likely to retether (doesn't rether according to some

neurosurgeons), so I can understand the value of saying that the results of

your poll are only applicable if the people began with the same initial

tether. BUT, if you open the poll to everyone and ask people what caused

their initial tether, you may find that initial type of tether is

meaningless. or a retether is a retether. Or you may be able to see that

people with fatty filum indeed do rether less.

-- Consider the population you are polling and how that can affect your

results. I would imagine that this population (on the TCS list) has a higher

incidence of retether than the general TCS population (even just fatty

filum). Those parents that had a child Dx and were told to wait and watch,

came here for info and their child did great and probably not still on this

list. But the people that continue to have problems are more likely to

remain members (and active members - reading email and responding) in an

email group like this).

I couldn't agree that the things you want to look at need to be examined. I

sure wish the docs and researchers would do so. Especially when it comes to

the prophylactic untethering. Since a mom explained the parent side as to

why a prophylactic untethering is done, it kind of makes sense. But it

would be interesting to see how many docs reccomended prophylactic

untetherings for their child with TCS who was able to walk and was potty

trained (say they were already in kindergarden). That kind of blows the

theory for the need for prophylactic untethering out of the water. These

kids could have EMGs and urodynamics and other studies to look for changes.

What about kids who can walk but aren't potty trained? Is there still room

to monitor without jumping in to surgery? I don't know. I can understand

operating on an infant that would not necessarily be difficult to test, but

be difficult for mom to know was not " normal. " (I know mom knows when her

baby is not normal, but when you do not know what your child's " normal "

development level is, how do you know if they are there or not? It can be

done but it is a lot harder and diagnosis can end up delayed.

Wow, I think I ended up off base from where I wanted to go. I look forward

to seeing what your results are. B

> I am curious about this retethering trend also, having one of the kids

> with

> a fatty filum who DID retether...

>

> I have a poll on this trying to find out enough info to see how many

> people

> do retether, and to see if there is any specific age group for having the

> first surgery that improves the odds, or if it's just the luck of the

> draw...

> part of me had wondered if doing the surgery as an early prophylactic

> measure

> increased your odds of retethering and having problems. Not sure if true

> though, since so many adults seem to be having repeat surgeries even after

> being

> diagnosed late? Oh well, can't remember what else I was going say and

> its late (lol).

>

> Jenn

>

> If want to " lend your voice " to this poll, here are the questions, and you

>

> can email your reply directly to me at

_conni60640@...<_conni60640%40aol.com>_

>

> (mailto:conni60640@... <conni60640%40aol.com>) ... I'm trying to get

> enough people to respond, both those with

> confirmed or suspected retethers after a fatty filum release, and those

> without

> retethering, to see any trends, and to send my info to some of the leading

>

> neurosurgeons to ask what THEY are seeing, and to find out if any of the

> docs

> are studying retethering, or pooling their info with other NSs for an

> overall

> trend.

>

> Question

> New and improved poll - Fatty Filum retethering

> For those of you whose tether was because of a thickened or fatty filum,

> how

> many have retethered after the original surgery? Also, please indicate age

> at

> surgery.

> Choices Confirmed retether re-released surgically due to symptoms NS

> suspects retether with symptoms, but not confirmed by surgery You suspect

> retether, with symptoms, but NS doesn't agree No signs of retether

>

> When surgery completed

>

> Surgery done before one year of age Surgery done between 1 and 2 Surgery

> done between 2 and 3 Surgery done between 3 and 12 Surgery done after 12

>

> Connie

> Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

> (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

> fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

>

> kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long

> segment

> lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum

> 8/06),

> extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

> 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01)

> tibial torsion

> and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

> DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

> beautiful smile ever)

> conni60640@... <conni60640%40aol.com>

>

> Our website: _http://members.tripod.com/conni60640-ivil/_

> (http://members.tripod.com/conni60640-ivil/)

>

> VACTERL/VATER support _

> http://health.groups.yahoo.com/group/VACTERLNetwork/_

> (http://health.groups.yahoo.com/group/VACTERLNetwork/)

>

> TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

> (http://health.groups.yahoo.com/group/LMC-TCS/)

>

> Congenital scoliosis support group

> _http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

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November 13, 2007

Conni... My daughter had a tight fillum terminale. Retethered due to scar

tissue after first, second and third surgeries ages 14, 15, 16. Give us your

results! randee

In a message dated 11/12/2007 1:53:12 P.M. Eastern Standard Time,

schmidt.amber@... writes:

I will be very interested to see the results of this!!

Amber

--- In _tetheredspinalcord@tetheredspintet_

(mailto:tetheredspinalcord ) , conni60640@., con

>

> I am curious about this retethering trend also, having one of the

kids with

> a fatty filum who DID retether...

>

> I have a poll on this trying to find out enough info to see how many

people

> do retether, and to see if there is any specific age group for

having the

> first surgery that improves the odds, or if it's just the luck of

the draw...

> part of me had wondered if doing the surgery as an early

prophylactic measure

> increased your odds of retethering and having problems. Not sure if

true

> though, since so many adults seem to be having repeat surgeries even

after being

> diagnosed late?

>

> If want to " lend your voice " to this poll, here are the questions,

and you

> can email your reply directly to me at _conni60640@ can

> (mailto:conni60640@ (mailto:conni60640@...) ... I'm tryin

respond, both those with

> confirmed or suspected retethers after a fatty filum release, and

those without

> retethering, to see any trends, and to send my info to some of the

leading

> neurosurgeons to ask what THEY are seeing, and to find out if any

of the docs

> are studying retethering, or pooling their info with other NSs for

an overall

> trend.

>

> Question

> New and improved poll - Fatty Filum retethering

> For those of you whose tether was because of a thickened or fatty

filum, how

> many have retethered after the original surgery? Also, please

indicate age at

> surgery.

> Choices Confirmed retether re-released surgically due to symptoms NS

> suspects retether with symptoms, but not confirmed by surgery You

suspect

> retether, with symptoms, but NS doesn't agree No signs of retether

>

> When surgery completed

>

> Surgery done before one year of age Surgery done between 1 and 2

Surgery

> done between 2 and 3 Surgery done between 3 and 12 Surgery done

after 12

>

> Connie

> Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

> (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06)

perineal

> fistula imperforate anus (repaired 5/00, managed with daily Exlax),

single

> kidney, PDA (closed on its own), malformed pelvis and hemisacrum,

long segment

> lumbosacral levoscoliosis with hemivertebrae (spinal fusion

T11-sacrum 8/06),

> extra left rib, genital anomalies with hypospadius (repairs

9/00,11/00,

> 5/01,12/01,12/ 5/01,12/01,12/03), hypoplastic left leg

5/01) tibial torsion

> and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI

reflux,

> DGE/gastroparesis, mild swallowing dysphagia, eating issues and the

most

> beautiful smile ever)

> conni60640@. co

>

> Our website: __http://members.http://membhttp://membhttp:/_

(http://members.tripod.com/conni60640-ivil/_)

> (_http://members.http://membhttp://membhttp:_

(http://members.tripod.com/conni60640-ivil/) )

>

> VACTERL/VATER support

__http://health.http://healthhttp://heahttp://health.h_

(http://health.groups.yahoo.com/group/VACTERLNetwork/_)

> (_http://health.http://healthhttp://heahttp://health._

(http://health.groups.yahoo.com/group/VACTERLNetwork/) )

>

> TC support group __http://health.http://healthhttp://heahttp://he_

(http://health.groups.yahoo.com/group/LMC-TCS/_)

> (_http://health.http://healthhttp://heahttp://h_

(http://health.groups.yahoo.com/group/LMC-TCS/) )

>

> Congenital scoliosis support group

> __http://health.http://healthhttp://heahttp://health.<Whttp://healh_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_)

> (_http://health.http://healthhttp://heahttp://health.<Whttp://heal_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/) )

>

> S. Jersey

>

> ************ **** **** ****************

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>

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

>

************************************** See what's new at http://www.aol.com

November 19, 2007

In a message dated 11/19/2007 6:59:51 A.M. Eastern Standard Time,

jlbobin@... writes:

- Why just focus on retethers who had fatty filum as their initial tether?

I know that the fatty filum type tether is supposed to be the " easiest " to

untether and the least likely to retether (doesn't retether according to some

neurosurgeons)neurosurgeons), so I can understand the value of saying

that

your poll are only applicable if the people began with the same initial

tether. BUT, if you open the poll to everyone and ask people what caused

their initial tether, you may find that initial type of tether is

meaningless. or a retether is a retether. Or you may be able to see that

people with fatty filum indeed do retether less.

The main reason I am interested in filum retethers (and this is tight,

inelastic filums also, not just fatty) is that all the docs want to say it

doesn't

happen... or that " they've never seen one " ... With tethers from LMC and SB,

the docs KNOW it can retether (heard guessed about a 30% chance at least of

retether) and don't put you off, but with the apparent infrequency of filum

tethers you get the runaround. WAS retethered, even though he wasn't

" supposed " to be...

And yes, I do know that we have adverse selection working against us here in

the groups, as those most in need of help are the people who stick around the

longest. However, I'm not totally worried about a true percentage rate,

rather looking to find as many people who have retethered, see when they were

initially detethered and compare it to samples of people with no problems to

see if any trends and such...

If I can find a fair number of people, maybe I can interest some of the

research minded docs to consider doing research with other NSs, not just in

their

own facility where they might not see a large enough number to show a true

trend...

Connie

Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment

lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06),

extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) tibial

torsion

and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile ever)

conni60640@...

Our website: _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_

(http://health.groups.yahoo.com/group/VACTERLNetwork/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

S. Jersey

************************************** See what's new at http://www.aol.com

November 19, 2007

I am with you Connie....the emphasis on this being such an " easy " one and

the unlikelihood of retethering was so emphasized (and perhaps with good reason

but who knows) that I was astounded to find out there is almost no research

on this and the pediatric neurosurgeons have little to no information on adult

retethers of people that they operated on in childhood. I think with the

fatty fillum in particular there are too few and just not interesting enough to

get the funding needed to do the kind of large scale long term follow up

that would be soooooooooooooo helpful to all of us! Tethered cord in general

is so unusual I guess. A friends husband told me the other day that in 30

years as a radiologist he has never seen one.

Randee

In a message dated 11/19/2007 2:38:16 P.M. Eastern Standard Time,

conni60640@... writes:

In a message dated 11/19/2007 6:59:51 A.M. Eastern Standard Time,

_jlbobin@..._ (mailto:jlbobin@...) writes:

- Why just focus on retethers who had fatty filum as their initial tether?

I know that the fatty filum type tether is supposed to be the " easiest " to

untether and the least likely to retether (doesn't retether according to some

neurosurgeons)neurosurgeons), so I can understand the value of saying

that

your poll are only applicable if the people began with the same initial

tether. BUT, if you open the poll to everyone and ask people what caused

their initial tether, you may find that initial type of tether is

meaningless. or a retether is a retether. Or you may be able to see that

people with fatty filum indeed do retether less.

The main reason I am interested in filum retethers (and this is tight,

inelastic filums also, not just fatty) is that all the docs want to say it

doesn't

happen... or that " they've never seen one " ... With tethers from LMC and SB,

the docs KNOW it can retether (heard guessed about a 30% chance at least of

retether) and don't put you off, but with the apparent infrequency of filum

tethers you get the runaround. WAS retethered, even though he wasn't

" supposed " to be...

And yes, I do know that we have adverse selection working against us here in

the groups, as those most in need of help are the people who stick around

the

longest. However, I'm not totally worried about a true percentage rate,

rather looking to find as many people who have retethered, see when they

were

initially detethered and compare it to samples of people with no problems to

see if any trends and such...

If I can find a fair number of people, maybe I can interest some of the

research minded docs to consider doing research with other NSs, not just in

their

own facility where they might not see a large enough number to show a true

trend...

Connie

Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long

segment

lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum

8/06),

extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/5/01,12/01,12/03), hypoplastic left leg with clubfoot

(repaired 5/01)

and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile ever)

_conni60640@..._ (mailto:conni60640@...)

Our website: __http://members.http://membhttp://membhttp:/_

(http://members.tripod.com/conni60640-ivil/_)

(_http://members.http://membhttp://membhttp:_

(http://members.tripod.com/conni60640-ivil/) )

VACTERL/VATER support __http://health.http://healthhttp://heahttp://health.h_

(http://health.groups.yahoo.com/group/VACTERLNetwork/_)

(_http://health.http://healthhttp://heahttp://health._

(http://health.groups.yahoo.com/group/VACTERLNetwork/) )

TC support group __http://health.http://healthhttp://heahttp://he_

(http://health.groups.yahoo.com/group/LMC-TCS/_)

(_http://health.http://healthhttp://heahttp://h_

(http://health.groups.yahoo.com/group/LMC-TCS/) )

Congenital scoliosis support group

__http://health.http://healthhttp://heahttp://health.<Whttp://healh_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_)

(_http://health.http://healthhttp://heahttp://health.<Whttp://heal_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/) )

S. Jersey

***************************************************_http://www.aol.h

tt_ (http://www.aol.com/)

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

************************************** See what's new at http://www.aol.com

November 19, 2007

In a message dated 11/19/2007 3:01:15 P.M. Eastern Standard Time,

Randeejae@... writes:

and the pediatric neurosurgeons have little to no information on adult

retethers of people that they operated on in childhood.

I think many of those children first operated on prophylactically are now

just becoming adults... we'll see what happens... I am especially interested in

seeing if doing surgery younger than a year increases the risks of

retether...

Connie

Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment

lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06),

extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) tibial

torsion

and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux, DGE/

gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile ever)

conni60640@...

Our website: _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_

(http://health.groups.yahoo.com/group/VACTERLNetwork/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

S. Jersey

************************************** See what's new at http://www.aol.com

November 19, 2007

Yes, sadly though I don't think we will see this research. Too few effected

to garner that kind of long range study I suspect. I also would guess that

the pendulum will swing back to waiting until more objective symptoms develop

ie bowel, bladder, weakness before doing surgery. i wish I had a gazillion

dollars to donate to NIH with the stipulation it be used to research long

term effects of surgery on tethered cord!

In a message dated 11/19/2007 3:22:14 P.M. Eastern Standard Time,

conni60640@... writes:

In a message dated 11/19/2007 3:01:15 P.M. Eastern Standard Time,

_Randeejae@..._ (mailto:Randeejae@...) writes:

and the pediatric neurosurgeons have little to no information on adult

retethers of people that they operated on in childhood.

I think many of those children first operated on prophylactically are now

just becoming adults... we'll see what happens... I am especially interested

in

seeing if doing surgery younger than a year increases the risks of

retether...

Connie

Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long

segment

lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum

8/06),

extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/5/01,12/01,12/03), hypoplastic left leg with clubfoot

(repaired 5/

and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux, DGE/

gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile ever)

_conni60640@..._ (mailto:conni60640@...)

Our website: __http://members.http://membhttp://membhttp:/_

(http://members.tripod.com/conni60640-ivil/_)

(_http://members.http://membhttp://membhttp:_

(http://members.tripod.com/conni60640-ivil/) )

VACTERL/VATER support __http://health.http://healthhttp://heahttp://health.h_

(http://health.groups.yahoo.com/group/VACTERLNetwork/_)

(_http://health.http://healthhttp://heahttp://health._

(http://health.groups.yahoo.com/group/VACTERLNetwork/) )

TC support group __http://health.http://healthhttp://heahttp://he_

(http://health.groups.yahoo.com/group/LMC-TCS/_)

(_http://health.http://healthhttp://heahttp://h_

(http://health.groups.yahoo.com/group/LMC-TCS/) )

Congenital scoliosis support group

__http://health.http://healthhttp://heahttp://health.<Whttp://healh_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_)

(_http://health.http://healthhttp://heahttp://health.<Whttp://heal_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/) )

S. Jersey

***************************************************_http://www.aol.h

tt_ (http://www.aol.com/)

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

************************************** See what's new at http://www.aol.com

November 25, 2007

IMO, I wouldn't be too concerned that you may have to, some day, have

the Surgery again. I wouldn't let it necessarily prevent you from having it

the first time,

if there is a strong feeling that it will help you.

I would willingly, let's say, have the Surgery every 3 years, if I knew I

would benefit from it.

But, my past experience tells me that I won't..........I have a past

experience from it, so I can make this decision.

But, for a person that doesn't have a past experience yet, you don't

know yet. You won't know if you will benefit, until you don't benefit.

That's not saying just go for it..........and not do your Homework, however.

Because that is something that needs to be done.

I hope that all made sense.

Brande

mymocha@...

I'm concerned that IF I

do this surgery that I wi;; need the surgery AGAIN at some point b/c

of the EDS issues!!!

December 10, 2007

Connie,

One of the reasons why I won't have the surgery is b/c I'm afraid of the

rethering issue!! I'm in a wheelchair due to TC adn I have EDS and a bunch of

other things...Em

conni60640@... wrote:

In a message dated 11/19/2007 6:59:51 A.M. Eastern Standard Time,

jlbobin@... writes:

- Why just focus on retethers who had fatty filum as their initial tether?

I know that the fatty filum type tether is supposed to be the " easiest " to

untether and the least likely to retether (doesn't retether according to some

neurosurgeons)neurosurgeons), so I can understand the value of saying

that

your poll are only applicable if the people began with the same initial

tether. BUT, if you open the poll to everyone and ask people what caused

their initial tether, you may find that initial type of tether is

meaningless. or a retether is a retether. Or you may be able to see that

people with fatty filum indeed do retether less.

The main reason I am interested in filum retethers (and this is tight,

inelastic filums also, not just fatty) is that all the docs want to say it

doesn't

happen... or that " they've never seen one " ... With tethers from LMC and SB,

the docs KNOW it can retether (heard guessed about a 30% chance at least of

retether) and don't put you off, but with the apparent infrequency of filum

tethers you get the runaround. WAS retethered, even though he wasn't

" supposed " to be...

And yes, I do know that we have adverse selection working against us here in

the groups, as those most in need of help are the people who stick around the

longest. However, I'm not totally worried about a true percentage rate,

rather looking to find as many people who have retethered, see when they were

initially detethered and compare it to samples of people with no problems to

see if any trends and such...

If I can find a fair number of people, maybe I can interest some of the

research minded docs to consider doing research with other NSs, not just in

their

own facility where they might not see a large enough number to show a true

trend...

Connie

Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment

lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06),

extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) tibial

torsion

and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile ever)

conni60640@...

Our website: _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_

(http://health.groups.yahoo.com/group/VACTERLNetwork/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

S. Jersey

************************************** See what's new at http://www.aol.com

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