Re: Is tethered cord a fluke or often associated with something else

[Guest guest]

Good question - I'd like to know if it's hereditary as well. I know lack of

folic acid during pregnancy is often blamed.

_____

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of H

Sent: Tuesday, May 02, 2006 10:21 AM

To: tetheredspinalcord

Subject: Is tethered cord a " fluke " or often associated with something

else

Is tethered cord a " fluke " or often associated with something else. How

often is it hereditary? Is there any place to look up figures?

Thanks,

Holly

---------------------------------

How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call

rates.

[Guest guest]

Bill said the following on 5/2/2006 9:14 PM:

> Good question - I'd like to know if it's hereditary as well. I know lack of

> folic acid during pregnancy is often blamed.

> _____

>

> From: tetheredspinalcord

> [mailto:tetheredspinalcord ] On Behalf Of H

> Sent: Tuesday, May 02, 2006 10:21 AM

> To: tetheredspinalcord

> Subject: Is tethered cord a " fluke " or often associated with something

> else

> Is tethered cord a " fluke " or often associated with something else. How

> often is it hereditary? Is there any place to look up figures?

> Thanks,

> Holly

>

Myself, V, and others on this list are involved in a study by Duke U to

answer that question.

There are no results as of yet. When there will be, it will be generalized

rather than individual. There are approximately 1100 participants. Environmental

conditions at the time of conception seem to be a factor. For instance, I was

born in Ames IA (farm country) in 1954, that was when widespread use of

herbicides and pesticides began, including many now banned substances such as

DDT. Is that why I was born with a neural tube defect? Who knows, they are

checking. Like Bill said, lack of essential nutrients is a factor also being

studied.

[Guest guest]

In a message dated 5/3/2006 3:21:25 AM Eastern Standard Time,

rick_lists@... writes:

Myself, V, and others on this list are involved in a study by Duke U

to answer that question.

There are no results as of yet. When there will be, it will be generalized

rather than individual. There are approximately 1100 participants.

My is part of that study also (along with DNA from our entire

family)... However, there are no environmental issues, nutritional issues or

lack of

folic acid surrounding 's conception/gestation... or anything that I can

pinpoint that may be a cause...

Connie

Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with

hemivertebrae, 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@..._ (mailto: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

[Guest guest]

conni60640@... said the following on 5/3/2006 5:55 AM:

>

> My is part of that study also (along with DNA from our entire

> family)... However, there are no environmental issues, nutritional issues or

lack of

> folic acid surrounding 's conception/gestation... or anything that I can

> pinpoint that may be a cause...

>

>

Hi Connie,

I was referring to environmental issues such as we no longer breathe

clean air, our water is chlorinated and fluoridated, our supposed fresh

fruits and vegetables have residues of pesticides and herbicides on and

in them no matter how much we wash and cook them. Our soil is

nutritionally depleted except for added artificial fertilizers, that

leaves our food nutritionally depleted. Our farm animals are injected

with antibiotics and growth hormones. Our packaged food is loaded with

preservatives, coloring, and other additives. You spray your underarm

with deodorant, your body absorbs thousands of molecules of

contaminants, especially if you just shaved.

Prior to the industrial age, cancer, heart & lung disease, neural tube

defects, and most other diseases did not exist. People died from

bacterial and viral infections mostly because of sanitation issues.

Rick

[Guest guest]

I am a bit confused. When we enrolled we did a complete environmental

questionaire. I told them everything from 3 mos before conception to

birth including my folic acid and the type of bed I slept in. Is that

what you are talking about Rick? Isn't that what everyone was doing

for intake?

Charnel

>

> conni60640@... said the following on 5/3/2006 5:55 AM:

> >

> > My is part of that study also (along with DNA from our entire

> > family)... However, there are no environmental issues, nutritional

issues or lack of

> > folic acid surrounding 's conception/gestation... or anything

that I can

> > pinpoint that may be a cause...

> >

> >

> Hi Connie,

>

> I was referring to environmental issues such as we no longer breathe

> clean air, our water is chlorinated and fluoridated, our supposed fresh

> fruits and vegetables have residues of pesticides and herbicides on and

> in them no matter how much we wash and cook them. Our soil is

> nutritionally depleted except for added artificial fertilizers, that

> leaves our food nutritionally depleted. Our farm animals are injected

> with antibiotics and growth hormones. Our packaged food is loaded with

> preservatives, coloring, and other additives. You spray your underarm

> with deodorant, your body absorbs thousands of molecules of

> contaminants, especially if you just shaved.

>

> Prior to the industrial age, cancer, heart & lung disease, neural tube

> defects, and most other diseases did not exist. People died from

> bacterial and viral infections mostly because of sanitation issues.

>

> Rick

>

[Guest guest]

In a message dated 5/4/2006 2:55:34 AM Eastern Standard Time,

rick_lists@... writes:

Prior to the industrial age, cancer, heart & lung disease, neural tube

defects, and most other diseases did not exist. People died from

bacterial and viral infections mostly because of sanitation issues.

This is true, and the damage to the environment does cause a lot of health

issues. However, SB has been documented back to 2000BC, so it isn't a new

disease, nor is the imperforate anus that my son has. Most of his issues have

been around since before the industrial age, so I can't blame modern man for

them... although I can thank the modern age because he would have been dead

within a couple weeks of birth without modern medicine It's a double edged

sword.

Anyway, in this case when I mentioned environmental factors, I meant known

issues like an area with heavy pesticide use, toxic waste, etc... or any

factors really different than when I conceived my other two " healthy " children,

as

a comparison for what might have happened differently this time to cause

's issues... I did answer the lengthy questions about what I did, where I

lived, etc. that the study had asked. Hopefully, they will find some clues

that can help prevent neural tube issues in the future!

Connie

Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with

hemivertebrae, 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@..._ (mailto: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

[Guest guest]

charneloj said the following on 5/4/2006 3:56 AM:

> I am a bit confused. When we enrolled we did a complete environmental

> questionaire. I told them everything from 3 mos before conception to

> birth including my folic acid and the type of bed I slept in. Is that

> what you are talking about Rick? Isn't that what everyone was doing

> for intake?

> Charnel

>

>

Exactly, that allows more study concentration specific to you and your

family. The general environmental conditions that exist today are a

significant factor.

Rick

[Guest guest]

Both, I think.

More often then not, or atleast you used to, only hear

it referred to in regards to Spina Bifida. Now they've

come to realize that there are Cases of it without

Spina Bifida.

There are some Cases where it can be Hereditary, but

it isn't completely Hereditary all around.

To my knowledge, there isn't a place where you will

be able to find complete figures. Too many variables.

Not much information, I know, but hopefully you are

able to take something from it.

Me

Nebraska, USA

mymocha@...

Is tethered cord a " fluke " or often associated with something else. How

often is it hereditary? Is there any place to look up figures?

[Guest guest]

conni60640@... said the following on 5/4/2006 8:54 AM:

>

> In a message dated 5/4/2006 2:55:34 AM Eastern Standard Time,

> rick_lists@... writes:

>

> Prior to the industrial age, cancer, heart & lung disease, neural tube

> defects, and most other diseases did not exist. People died from

> bacterial and viral infections mostly because of sanitation issues.

>

>

> This is true, and the damage to the environment does cause a lot of health

> issues. However, SB has been documented back to 2000BC, so it isn't a new

> disease,

Interesting, I had not found that information, thanks.

Rick

> nor is the imperforate anus that my son has. Most of his issues have

> been around since before the industrial age, so I can't blame modern man for

> them... although I can thank the modern age because he would have been dead

> within a couple weeks of birth without modern medicine It's a double

edged

> sword.

> Anyway, in this case when I mentioned environmental factors, I meant known

> issues like an area with heavy pesticide use, toxic waste, etc... or any

> factors really different than when I conceived my other two " healthy "

children, as

> a comparison for what might have happened differently this time to cause

> 's issues... I did answer the lengthy questions about what I did, where

I

> lived, etc. that the study had asked. Hopefully, they will find some clues

> that can help prevent neural tube issues in the future!

>

> Connie

>

[Guest guest]

My daughter seems to have tethered cord without spina bifida according

to my understanding.

>

>

> Both, I think.

>

> More often then not, or atleast you used to, only hear

> it referred to in regards to Spina Bifida. Now they've

> come to realize that there are Cases of it without

> Spina Bifida.

>

> There are some Cases where it can be Hereditary, but

> it isn't completely Hereditary all around.

>

> To my knowledge, there isn't a place where you will

> be able to find complete figures. Too many variables.

>

> Not much information, I know, but hopefully you are

> able to take something from it.

>

> Me

> Nebraska, USA

> mymocha@...

>

> Is tethered cord a " fluke " or often associated with something else.

How

> often is it hereditary? Is there any place to look up figures?

>

[Guest guest]

It's not hereditary in all Cases, and it also depends on what

kind of Tethering you have, I'm sure.

I don't know that Folic Acid plays a role with Tethered

Cord alone. I don't think it does. But I could be wrong.

Me

Nebraska, USA

mymocha@...

> Good question - I'd like to know if it's hereditary as well. I know lack

> of

> folic acid during pregnancy is often blamed.

>

[Guest guest]

In a message dated 5/2/2006 11:15:21 PM Eastern Standard Time,

blast21@... writes:

I know lack of

folic acid during pregnancy is often blamed.

This has only been associated with the " typical " spina bifida that everyone

thinks of - the open spina bifida with the cord exposed on the back... I've

never heard a correlation with the closed neural tube defects, and almost all

the people we've surveyed on another TC list that is mainly parents of

children were on folic acid supplements during their pregnancy...

As for the hereditary thing, I don't believe that it's directly hereditary

like one person passing a specific gene onto another like most people think of

with hereditary issues, however I'm sure there's some kind of hereditary

" susceptibility " involved, since I have heard of a couple families with more

than one person being affected... Duke is looking for families with more than

one member with a neural tube defect in order to study that more in depth...

Connie

Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with

hemivertebrae, 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@..._ (mailto: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

[Guest guest]

Having read a lot of the posts here, my input is that tethered cord *is* a

total fluke.

For instance, when I was born in 1966, I was the only child in a very

long-lived family (like, most ancestors died in their 80s and 90s) to have

a birth defect. My mum and dad and their family siblings are/were fine, and

my sister has no problem at all

Of course now that I have been affected by a form of SB, she has to be

careful to be prepared for pregnancy, and should I so wish to have a child

I will have to be monitored for children being similarly affected

Just my two penn'orth

Regards from a beautiful sunny, not humid day in Bristol - hooray

Nina

Bristol, UK

--

>

> In a message dated 5/2/2006 11:15:21 PM Eastern Standard Time,

> blast21@... writes:

>

> I know lack of

> folic acid during pregnancy is often blamed.

>

>

>

> This has only been associated with the " typical " spina bifida that

> everyone thinks of - the open spina bifida with the cord exposed on the

> back... I've never heard a correlation with the closed neural tube

> defects, and almost all the people we've surveyed on another TC list

> that is mainly parents of children were on folic acid supplements

> during their pregnancy...

> As for the hereditary thing, I don't believe that it's directly

> hereditary like one person passing a specific gene onto another like

> most people think of with hereditary issues, however I'm sure there's

> some kind of hereditary " susceptibility " involved, since I have heard

> of a couple families with more than one person being affected... Duke

> is looking for families with more than one member with a neural tube

> defect in order to study that more in depth...

>

> Connie

> Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

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

> fistula imperforate anus (repaired 5/00), single kidney, PDA (closed on

> its own), malformed pelvis and hemisacrum, long segment lumbosacral

> levoscoliosis with hemivertebrae, 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@..._ (mailto: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

>

>

>

>