Re: To the group in general

[Guest guest]

All of my research, etc. revealed that having the surgery as a child could

make the difference. My doctor told me I have 50 years of nerve damage that

would not be there had I been diagnosed sooner. If my child was diagnosed, I

would definitely try surgery. Just get the right doctor and medical team.

>From: hirudina@...

>Reply-To: tetheredspinalcord

>To: tetheredspinalcord

>Subject: To the group in general

>Date: Mon, 20 Sep 2004 00:01:53 -0400

>

> wrote, " Having surgery for the first time may open a can of worms

>that can't be undone "

>

>As a mom, this worries me, Does this apply to the older TCS patients only?

>Will I doom Sam to other problems down the line? I've been noticing thaty

>many of you have problems ditretly related to the surgery- I am so sorry

>for all of the pain you all have felt.

>

>What will Sam's life be like in 5/10/20 years? Will the surgery help him

>normalize, or is that a life-long condition? I haven't gotten many answers

>online and the doc was a bit vague.

>

>TIA,

>Stacey & Sam (age 20 months)

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

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[Guest guest]

I've seen 2 neuros and both have differing opinions.

One pointed out that the majority of babies have surgery before bowel

and bladder control is mastered. He made a fair comment with, " if

success is measured by bladder control, how could a doctor tell if

the child was going to have normal control without the surgery? "

This surgeon was reluctant to operate on me because of the same

reasons Judy's said. I've had nerve damage for 34 years but I don't

want it to deteriorate any further.

I wonder what life would have been like if I was diagnosed back in

1970 but surgery then was so different and I would imagine that I

would now have more difficulties than if I had no surgery?

Modern techniques now possibly mean that children will grow up and

not have this 'timebomb' as they grow older.

Of course, this is only my opinion.

Carey

Hove UK

> All of my research, etc. revealed that having the surgery as a

child could

> make the difference. My doctor told me I have 50 years of nerve

damage that

> would not be there had I been diagnosed sooner. If my child was

diagnosed, I

> would definitely try surgery. Just get the right doctor and

medical team.

>

>

> >From: hirudina@a...

> >Reply-To: tetheredspinalcord

> >To: tetheredspinalcord

> >Subject: To the group in general

> >Date: Mon, 20 Sep 2004 00:01:53 -0400

> >

> > wrote, " Having surgery for the first time may open a can of

worms

> >that can't be undone "

> >

> >As a mom, this worries me, Does this apply to the older TCS

patients only?

> >Will I doom Sam to other problems down the line? I've been

noticing thaty

> >many of you have problems ditretly related to the surgery- I am so

sorry

> >for all of the pain you all have felt.

> >

> >What will Sam's life be like in 5/10/20 years? Will the surgery

help him

> >normalize, or is that a life-long condition? I haven't gotten many

answers

> >online and the doc was a bit vague.

> >

> >TIA,

> >Stacey & Sam (age 20 months)

>

> _________________________________________________________________

> Express yourself instantly with MSN Messenger! Download today -

it's FREE!

> hthttp://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

[Guest guest]

My daughter's detethering was her only chance for a shot at a " normal " life. A

tethering is not going to detether on its own. It will either take invasive

surgery or God's intervention. For Sydney, God's intervention was through

invasive detethering surgery at age 16 months. I can't worry about what might

happen down the road. I can only deal with what is here and now. And, without

the surgery, she would not have been able to have the stamina or the physical

ability to walk on her own. It would have been physiologically unable to occur.

I think it is important to have a good neurosurgeon. But, it is also important

to act on it quickly (especially in the case of an infant). I don't know for

adults, how critical and time sensitive surgery is. Making sure your nsg has

experience with detethering and experience with successful outcomes is a must.

For us, a good bedside manner was not so important as his/her skill.

Neurosurgeons are not family care doctors for a reason...they are highly

specialized and only see cases that are referred usually from neurologists or

orthos. We choose them, not for their bedside manner, rather for their surgical

skills. I do highly recommend our neurosurgeon here in Texas. We are only3

months post op, but it is like a difference of night and day when compared to

pre op.

--------- To the group in general

> > >Date: Mon, 20 Sep 2004 00:01:53 -0400

> > >

> > > wrote, " Having surgery for the first time may open a can of

> worms

> > >that can't be undone "

> > >

> > >As a mom, this worries me, Does this apply to the older TCS

> patients only?

> > >Will I doom Sam to other problems down the line? I've been

> noticing thaty

> > >many of you have problems ditretly related to the surgery- I am so

> sorry

> > >for all of the pain you all have felt.

> > >

> > >What will Sam's life be like in 5/10/20 years? Will the surgery

> help him

> > >normalize, or is that a life-long condition? I haven't gotten many

> answers

> > >online and the doc was a bit vague.

> > >

> > >TIA,

> > >Stacey & Sam (age 20 months)

> >

> > _________________________________________________________________

> > Express yourself instantly with MSN Messenger! Download today -

> it's FREE!

> > hthttp://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

>

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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

> rick@...

>

[Guest guest]

I think we are neglecting the adults who have gone through the

majority of our lives without any problems!

A cord can be tethered yet not cause any issues, it's only when

symptoms arise that most surgeons will intervene and tackle surgery.

The NS who will operate on me is head of neurosurgery at the Bristol

Frenchay, this is a teaching hospital. My local hospital is also a

teaching hospital and the NS I have been seeing is very experienced

yet has a differing opinion.

I wish you and your little girl all the luck in the world and hope

that the surgery has alleviated the issues that were troubling her.

It certainly sounds good so far.

I must add that my parents were told that I would never walk unaided -

wrong! There's an example of my parents 'bloody mindedness' and my

stubborness!! lol

Carey

Hove UK

> My daughter's detethering was her only chance for a shot at

a " normal " life. A tethering is not going to detether on its own. It

will either take invasive surgery or God's intervention. For Sydney,

God's intervention was through invasive detethering surgery at age 16

months. I can't worry about what might happen down the road. I can

only deal with what is here and now. And, without the surgery, she

would not have been able to have the stamina or the physical ability

to walk on her own. It would have been physiologically unable to

occur. I think it is important to have a good neurosurgeon. But, it

is also important to act on it quickly (especially in the case of an

infant). I don't know for adults, how critical and time sensitive

surgery is. Making sure your nsg has experience with detethering and

experience with successful outcomes is a must. For us, a good bedside

manner was not so important as his/her skill. Neurosurgeons are not

family care doctors for a reason...they are highly specialized and

only see cases that are referred usually from neurologists or orthos.

We choose them, not for their bedside manner, rather for their

surgical skills. I do highly recommend our neurosurgeon here in

Texas. We are only3 months post op, but it is like a difference of

night and day when compared to pre op.

>

>

>

> -------------- Original message --------------

>

> > I've seen 2 neuros and both have differing opinions.

> > One pointed out that the majority of babies have surgery before

bowel

> > and bladder control is mastered. He made a fair comment with, " if

> > success is measured by bladder control, how could a doctor tell

if

> > the child was going to have normal control without the surgery? "

> >

> > This surgeon was reluctant to operate on me because of the same

> > reasons Judy's said. I've had nerve damage for 34 years but I

don't

> > want it to deteriorate any further.

> >

> > I wonder what life would have been like if I was diagnosed back

in

> > 1970 but surgery then was so different and I would imagine that I

> > would now have more difficulties than if I had no surgery?

> > Modern techniques now possibly mean that children will grow up

and

> > not have this 'timebomb' as they grow older.

> >

> > Of course, this is only my opinion.

> >

> > Carey

> > Hove UK

> >

[Guest guest]

My son is now 9. He was diagnosed with TSC at birth (lypomyelomeningocele). He

had his first detethering at 5 months or so of age. He has developed perfectly

normally. We go for annual rechecks. At the last one, we discovered the cord

had retethered (from an MRI). He had a second detethering this past summer,

with an additional laser procedure that has significantly reduced the likelihood

of another retether, though it is still possible of course. Our son has

recovered fully. No one who isn't told he had a problem would ever know, except

for the large scar at the base of his back. I don't know what the future holds,

but we are under the impression that continued careful monitoring, especially

through the next few years of rapid growth, will go a long ways towards helping

him remain problem free.

Both of our pediatric neurosurgeons approached surgery as if it were without

question the correct route. We didn't hesitate to do it. And it seems to be

working for him. Maybe there is something about my son's case that is different

than what most people here are experiencing, I don't know. But I just want Sam

to know that we are a case where the tether has been successfully,

preventatively managed, and our son has a very normal life (except that he won't

be playing football in high school.).

Kathleen

[Guest guest]

Hello I apologize for my blunt statement " surgery can open a can of

worms that can't be unknown " let me flesh it out a little better to

possibly give you a more optimistic approach.

Most of us who have had surgery for the first time, were not as

informed about the risks/complications of the surgery until we

started experiencing them for ourselves. Take me for example:

I was told that untethering the spine would halt my neurological

deterioration and that there was only a 10% chance that I would

retether and the possibility of recovering from some deterioration.

I thought great, I will have this off my back and out of my mind

forever and if I do retether a subsequent operation would take care

of it. Looking back on it know I truly was not informed

sufficiently it is as if the surgeon didn't trust giving me complete

information or that I wouldn't understand him.

Here are some of the facts that I didn't know at the time:

1. We almost always anatomically retether to the scar tissue that

forms in our back...the 10% figure is refering to symptomatic

tethering..aka a tethering that is causing symptoms...as some don't

and some do. Take me for example, I was tethered at birth had no

dimples and didn't have any symptoms until I was 12. Some people

have obvious symptoms at birth and rates of deterioration are

different.

2. So if we are all tethered anyway what makes a tethered cord have

symptoms? I have been told that trauma after surgery can activate

the symptoms an deterioration...such as slip and falls...auto

accidents etc.

3. I didn't know that I would retether to the scar tissue that the

surgery created or that scar tissue was ever an issue. In fact I

saw 3 neurosurgeons before surgery number one to become as informed

as possible and not one mentioned scar tissue. Now no untethering

procedure is scarless but some procedures can control how the

scaring grows and hopefully create an environment that is more

conducive to long-term healing. I have heard that intradural grafts

are helpful in this regard...I never had one, don't know if it would

have been helpful, but many surgeons seem to sweer by this so it is

definitely something to ask about.

4. Yes adults are more complicated, every neurosurgeon I have seen

has told me that adults atomatically add a level of complication

because we don't naturally heal as well as children; moreover, we

have already gone through a much more significant portion of our

lives in the midst of neurological deterioration. So significant

damage has already occured.

***I apologize again for the surgery opens a can of worms

statement. Something to know about us TCS'ers me in particular, is

that our best days were always yesterday. Meaning our condition is

a deteriorating one so unless it is stabilized...every day of every

week of every year brings us one more noticeable disadvantage unless

things stabilize.

With me, sure surgery opened a can of worms, but I am also not sure

if I would be in a much worse place now than I would have been had I

not had surgery at all. Before I had my first procedure things were

deteriorating very fast over the course of just one year. Now I am

a bit spiteful because I have new symptoms but I may have had them

or worse otherwise.

I would say that you are lucky that this was found so early in your

child's life, and almost all of us stand by our first procedures.

The great news is that you have the benefit of our knowledge as

informed patients and you should start a thread titled: what to ask

the doctor so you too feel like you know the ins and outs of what to

expect from the procedure.

1 Ask the doctor how many of these surgeries he handles a month.

most experts handle 2-3 per month.

2. Ask the doctor about scar tissue and what can be done to control

or minimize it.

3. Make sure the doctor is board certifide and ask him what parts of

the surgery he will handle versus' his assistants(yeah sometimes

residents are allowed to take part and you become part of their

education).

4. Ask him if you can formulate a long-term treatment plan because

your son will be following this up for the rest of his life, so in

case retethering occurs having a surgeon that knows your son's

baseline level is important.

I wish you the best of luck and hope for the best, if it makes you

feel better, I wish my mother figured out my symptoms earlier and

took action when I was younger than 20, I know we both wish it.

Right now age is one your son's side and new technology is on your

side, get someone who has a wealth of experience in this area.

> > My daughter's detethering was her only chance for a shot at

> a " normal " life. A tethering is not going to detether on its own.

It

> will either take invasive surgery or God's intervention. For

Sydney,

> God's intervention was through invasive detethering surgery at age

16

> months. I can't worry about what might happen down the road. I can

> only deal with what is here and now. And, without the surgery, she

> would not have been able to have the stamina or the physical

ability

> to walk on her own. It would have been physiologically unable to

> occur. I think it is important to have a good neurosurgeon. But,

it

> is also important to act on it quickly (especially in the case of

an

> infant). I don't know for adults, how critical and time sensitive

> surgery is. Making sure your nsg has experience with detethering

and

> experience with successful outcomes is a must. For us, a good

bedside

> manner was not so important as his/her skill. Neurosurgeons are

not

> family care doctors for a reason...they are highly specialized and

> only see cases that are referred usually from neurologists or

orthos.

> We choose them, not for their bedside manner, rather for their

> surgical skills. I do highly recommend our neurosurgeon here in

> Texas. We are only3 months post op, but it is like a difference of

> night and day when compared to pre op.

> >

> >

> >

> > -------------- Original message --------------

> >

> > > I've seen 2 neuros and both have differing opinions.

> > > One pointed out that the majority of babies have surgery

before

> bowel

> > > and bladder control is mastered. He made a fair comment

with, " if

> > > success is measured by bladder control, how could a doctor

tell

> if

> > > the child was going to have normal control without the

surgery? "

> > >

> > > This surgeon was reluctant to operate on me because of the

same

> > > reasons Judy's said. I've had nerve damage for 34 years but I

> don't

> > > want it to deteriorate any further.

> > >

> > > I wonder what life would have been like if I was diagnosed

back

> in

> > > 1970 but surgery then was so different and I would imagine

that I

> > > would now have more difficulties than if I had no surgery?

> > > Modern techniques now possibly mean that children will grow up

> and

> > > not have this 'timebomb' as they grow older.

> > >

> > > Of course, this is only my opinion.

> > >

> > > Carey

> > > Hove UK

> > >

[Guest guest]

i have started to write several, several times over the past few months.

but, usually, grief has me confused and i don't feel fluent in my writing,

so i delete what i have written. my oldest had her detethering about 18

months ago, she is now 5. the youngest is being monitored and the middle

child is now showing symptoms of tcs. so, i have 2 children w/ tcs due to

fatty filum and the third is going in for mri tomorrow. who is your son's

nsg? and where is he? i have not heard about the laser, maybe our nsg used

it and didn't tell me. i will call him and ask. what about the procedure

using a foreign material to prevent retethering? all of this was so new to

me, and i would have been so lost without this support group. thank you each

and every one. susan fenley.

RE: To the group in general

> My son is now 9. He was diagnosed with TSC at birth

(lypomyelomeningocele). He had his first detethering at 5 months or so of

age. He has developed perfectly normally. We go for annual rechecks. At

the last one, we discovered the cord had retethered (from an MRI). He had a

second detethering this past summer, with an additional laser procedure that

has significantly reduced the likelihood of another retether, though it is

still possible of course. Our son has recovered fully. No one who isn't

told he had a problem would ever know, except for the large scar at the base

of his back. I don't know what the future holds, but we are under the

impression that continued careful monitoring, especially through the next

few years of rapid growth, will go a long ways towards helping him remain

problem free.

>

> Both of our pediatric neurosurgeons approached surgery as if it were

without question the correct route. We didn't hesitate to do it. And it

seems to be working for him. Maybe there is something about my son's case

that is different than what most people here are experiencing, I don't know.

But I just want Sam to know that we are a case where the tether has been

successfully, preventatively managed, and our son has a very normal life

(except that he won't be playing football in high school.).

>

> Kathleen

>

>

>

>

[Guest guest]

lisa, what are the differences in your daughter? thanks, susan fenley. mom

of 2 w/ tcs and third going in for mri tomorrow.

To the group in general

> > > >Date: Mon, 20 Sep 2004 00:01:53 -0400

> > > >

> > > > wrote, " Having surgery for the first time may open a can of

> > worms

> > > >that can't be undone "

> > > >

> > > >As a mom, this worries me, Does this apply to the older TCS

> > patients only?

> > > >Will I doom Sam to other problems down the line? I've been

> > noticing thaty

> > > >many of you have problems ditretly related to the surgery- I am so

> > sorry

> > > >for all of the pain you all have felt.

> > > >

> > > >What will Sam's life be like in 5/10/20 years? Will the surgery

> > help him

> > > >normalize, or is that a life-long condition? I haven't gotten many

> > answers

> > > >online and the doc was a bit vague.

> > > >

> > > >TIA,

> > > >Stacey & Sam (age 20 months)

> > >

> > > _________________________________________________________________

> > > Express yourself instantly with MSN Messenger! Download today -

> > it's FREE!

> > > hthttp://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

> >

> >

> >

> >

> > Not Medical Advice. We Are Not Doctors.

> > Need help with the list? Email

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

> > rick@...

> >

[Guest guest]

Excellent points you make below and I don't think your statement is

blunt at all. The possibility of opening up a can of worms is neither

pessimistic nor optimistic, it's FACTS that should be considered and

addressed if one is gathering information to make such a decision

based on a persons own unique medical situation.

You risked opening the can and it's unfortunate that you didn't know

what might be in the can <hugs>. My boyfriend, knowing the possible

outcomes and weighing them against his own medical issues, has chosen

to keep the can shut at this time... " it ain't worth it "

Soul

> Hello I apologize for my blunt statement " surgery can open a can of

> worms that can't be unknown " let me flesh it out a little better to