Re: Chris - mostly Spina Bifida and Bowel and Bladder trouble!

[Guest guest]

I am afraid I am not going to be much help to you on this Subject. But I

will try.

I have Spina Bifida, Myelomeningocele........but I do not have the Bowel and

Bladder trouble that the majority of people have with this Type of Spina

Bifida.

I have learned from being on the Lists for Spina Bifida, that even the ones

that do have Bowel and Bladder troubles, they are not all treated the same.

Some Cath, some wear Diapers and Leak, some have had the Procedures done

that you have mentioned, and then there are a few like me.

I think what is done is decided on an indvidual basis.

Are you interested in the Spina Bifida Lists? They are Email ones, like this

one. Quite a bit of Traffic, but not overwehlming. If your interested, let

me know and I will send the Subscribing Information though the List.

Hope this helps.

Me

Nebraska, USA

mymocha@...

> I joined a group for people with ostomies. I have wondered since joining

this group why I have a urostomy for urine and everyone here cath's to

empty. One of the girls in that Group who also has SB although hers is worse

than mine also has a urostomy or ileostomy for urine. She said the reason is

because our bladders were spastic. So what I want to know is there a

difference between spastic bladder and neurogenic bladder? Hope you can

answer if not maybe you can send me in the right direction to find the

answer.

[Guest guest]

Brande , That would be great! I was searching for that when I found this one

which has been helpful but would still like more info on the SB. Mine is

Occulta(sp) by the way and I have just learned the difference between them

recently. You know it is so strange that I have had this all my life and am just

learning about all of it. I guess because my biggest problem has always been my

kidneys the little signs the SB and TC were giving me I ignored. Maybe if I had

caught them sooner this time things wouldn't have been so bad. I have had

questions for you for a couple days but have been having a rough time so haven't

wanted to sit at the computer I plan on posting them all as soon as I can sit

long enough to do it. Thanks Chris

Re: - mostly Spina Bifida and Bowel and Bladder trouble!

I am afraid I am not going to be much help to you on this Subject. But I

will try.

I have Spina Bifida, Myelomeningocele........but I do not have the Bowel and

Bladder trouble that the majority of people have with this Type of Spina

Bifida.

I have learned from being on the Lists for Spina Bifida, that even the ones

that do have Bowel and Bladder troubles, they are not all treated the same.

Some Cath, some wear Diapers and Leak, some have had the Procedures done

that you have mentioned, and then there are a few like me.

I think what is done is decided on an indvidual basis.

Are you interested in the Spina Bifida Lists? They are Email ones, like this

one. Quite a bit of Traffic, but not overwehlming. If your interested, let

me know and I will send the Subscribing Information though the List.

Hope this helps.

Me

Nebraska, USA

mymocha@...

> I joined a group for people with ostomies. I have wondered since joining

this group why I have a urostomy for urine and everyone here cath's to

empty. One of the girls in that Group who also has SB although hers is worse

than mine also has a urostomy or ileostomy for urine. She said the reason is

because our bladders were spastic. So what I want to know is there a

difference between spastic bladder and neurogenic bladder? Hope you can

answer if not maybe you can send me in the right direction to find the

answer.

[Guest guest]

Oh another thing has anyone ever told you how you managed to avoid the bladder

and bowel issues? If we all only knew that secret!!! Chris

Re: - mostly Spina Bifida and Bowel and Bladder trouble!

I am afraid I am not going to be much help to you on this Subject. But I

will try.

I have Spina Bifida, Myelomeningocele........but I do not have the Bowel and

Bladder trouble that the majority of people have with this Type of Spina

Bifida.

I have learned from being on the Lists for Spina Bifida, that even the ones

that do have Bowel and Bladder troubles, they are not all treated the same.

Some Cath, some wear Diapers and Leak, some have had the Procedures done

that you have mentioned, and then there are a few like me.

I think what is done is decided on an indvidual basis.

Are you interested in the Spina Bifida Lists? They are Email ones, like this

one. Quite a bit of Traffic, but not overwehlming. If your interested, let

me know and I will send the Subscribing Information though the List.

Hope this helps.

Me

Nebraska, USA

mymocha@...

> I joined a group for people with ostomies. I have wondered since joining

this group why I have a urostomy for urine and everyone here cath's to

empty. One of the girls in that Group who also has SB although hers is worse

than mine also has a urostomy or ileostomy for urine. She said the reason is

because our bladders were spastic. So what I want to know is there a

difference between spastic bladder and neurogenic bladder? Hope you can

answer if not maybe you can send me in the right direction to find the

answer.

[Guest guest]

The 2 that I recommend are: SB-Parents - To Subscribe, send a Blank Email

to:

sb-parents-subscribe

and SBMoms-N-Dads - To Subscribe, send a Blank Email to:

sbmoms-n-dads-subscribe

I don't believe that either one of them has alot of people with Spina Bifida

Occulta.............but when you get down to the specific problems you deal

with, such as the Bowel and Bladder ones, they have alot to offer.

From what I have learned, alot of people with Spina Bifida Occulta don't

even know they have it because they have no problems, so it seems. Or they

come upon it incidently because they are looking for something else, or they

actually do become Symptomatic of it................from what I have

learned, these last 2 things usually happen when a person is older. Hope

that makes sense.

Hope this helps, Chris.

Just some suggestions from Brande.

Me

Nebraska, USA

mymocha@...

That would be great! I was searching for that when I found this one which

has been helpful but would still like more info on the SB. Mine is

Occulta(sp) by the way You know it is so strange that I have had this all my

life and am just learning about all of it. I guess because my biggest

problem has always been my kidneys the little signs the SB and TC were

giving me I ignored.

[Guest guest]

The 2 that I recommend are: SB-Parents - To Subscribe, send a Blank Email

to:

sb-parents-subscribe

and SBMoms-N-Dads - To Subscribe, send a Blank Email to:

sbmoms-n-dads-subscribe

I don't believe that either one of them has alot of people with Spina Bifida

Occulta.............but when you get down to the specific problems you deal

with, such as the Bowel and Bladder ones, they have alot to offer.

From what I have learned, alot of people with Spina Bifida Occulta don't

even know they have it because they have no problems, so it seems. Or they

come upon it incidently because they are looking for something else, or they

actually do become Symptomatic of it................from what I have

learned, these last 2 things usually happen when a person is older. Hope

that makes sense.

Hope this helps, Chris.

Just some suggestions from Brande.

Me

Nebraska, USA

mymocha@...

That would be great! I was searching for that when I found this one which

has been helpful but would still like more info on the SB. Mine is

Occulta(sp) by the way You know it is so strange that I have had this all my

life and am just learning about all of it. I guess because my biggest

problem has always been my kidneys the little signs the SB and TC were

giving me I ignored.

[Guest guest]

The 2 that I recommend are: SB-Parents - To Subscribe, send a Blank Email

to:

sb-parents-subscribe

and SBMoms-N-Dads - To Subscribe, send a Blank Email to:

sbmoms-n-dads-subscribe

I don't believe that either one of them has alot of people with Spina Bifida

Occulta.............but when you get down to the specific problems you deal

with, such as the Bowel and Bladder ones, they have alot to offer.

From what I have learned, alot of people with Spina Bifida Occulta don't

even know they have it because they have no problems, so it seems. Or they

come upon it incidently because they are looking for something else, or they

actually do become Symptomatic of it................from what I have

learned, these last 2 things usually happen when a person is older. Hope

that makes sense.

Hope this helps, Chris.

Just some suggestions from Brande.

Me

Nebraska, USA

mymocha@...

That would be great! I was searching for that when I found this one which

has been helpful but would still like more info on the SB. Mine is

Occulta(sp) by the way You know it is so strange that I have had this all my

life and am just learning about all of it. I guess because my biggest

problem has always been my kidneys the little signs the SB and TC were

giving me I ignored.

[Guest guest]

No 2 people with Spina Bifida are affected the same way, even if they have

the same Level of Lesion. I think this may also hold true for Tethered

Cord.........in that no 2 people are affected the same.

Me

Nebraska, USA

mymocha@...

has anyone ever told you how you managed to avoid the bladder and bowel

issues?

[Guest guest]

Brande,

Doesn't the Occulta mean skin covered or closed? I'm not sure about this stuff

although they found mine at age six because of UTI's. Doing the first surgery

obviously didn't fix the bladder or bowel issues. It was only six months before

the urostomy was done. I was just asking about the lipoma that this nsg

has just removed. My first nsg always said it couldn't be totally removed but

this nsg has just done exactly that. I was asking her if she thought it would

grow back it has in the past obviously (it is what the cord tethered to) But

because it was never totally removed before could that make a difference? Thanks

for the info on the SB groups I am still learning about all the technical stuff

that goes with everything my body has. Weird isn't it that this has always been

a part of my life but I guess I never thought to ask questions about it? I told

boy if I could talk to my first nsg I would have a bunch of stuff to

ask him. I wish they could locate those old records. I have had three different

doctors try and they just can't get them.

Anyway I am interested in learning more about the SB and you seem to be the best

one to ask. I do know there are different kinds. I have read a little about it

but all the medical terms confuse me. I know mine is a lower level I guess. So

is my nerve damage (bladder) from the SB or the TC? Which I guess the TC is

because of the SB? And what about the Lipoma is that part of the SB? And the

patch as they call it what exactly is that? I'm sorry if you don't want to

answer this stuff that's fine just direct me to the right site that makes it

understandable. Chris

P.S. If you would like to answer this stuff in a private email that would be

fine. I'm always afraid of scaring people on the list. I know I have had a few

scares reading posts.

Re: - mostly Spina Bifida and Bowel and Bladder trouble!

The 2 that I recommend are: SB-Parents - To Subscribe, send a Blank Email

to:

sb-parents-subscribe

and SBMoms-N-Dads - To Subscribe, send a Blank Email to:

sbmoms-n-dads-subscribe

I don't believe that either one of them has alot of people with Spina Bifida

Occulta.............but when you get down to the specific problems you deal

with, such as the Bowel and Bladder ones, they have alot to offer.

From what I have learned, alot of people with Spina Bifida Occulta don't

even know they have it because they have no problems, so it seems. Or they

come upon it incidently because they are looking for something else, or they

actually do become Symptomatic of it................from what I have

learned, these last 2 things usually happen when a person is older. Hope

that makes sense.

Hope this helps, Chris.

Just some suggestions from Brande.

Me

Nebraska, USA

mymocha@...

That would be great! I was searching for that when I found this one which

has been helpful but would still like more info on the SB. Mine is

Occulta(sp) by the way You know it is so strange that I have had this all my

life and am just learning about all of it. I guess because my biggest

problem has always been my kidneys the little signs the SB and TC were

giving me I ignored.

[Guest guest]

Well, it means that it is hidden in some way........but from what I have

learned, there can be some outward signs, but they are overlooked for

whatever reason.

It may be hard for some to deterime if ones damage is from Spina Bifida or

Tethered Cord, if a person has both. However, Spina Bifida doesn't really

worsen though, so I would say if you had certain problems from the get go,

those would be the ones from Spina Bifida. And the ones that came up along

the way, might be more related to Tethered Cord. And maybe there is damage

that can be done that is a combination of both.

From what I know, yes, your Lipoma could be your Spina Bifida

(Lipomyelomingocele, Lipomeningocele). Which, in turn, initially created

your Tethered Cord. But maybe this isn't what you have, I can't say for

sure. For myself though, my form of Spina Bifida is Myelomeningocele, not

with a Lipoma. Tethered Cord, for me, was created by the Closure Surgery

that was done after I was born. I did end up developing a small Lipoma

though, that was deemed not connected to my Tethered Cord at age 20.

Does that make any sense? lol

What kind of Patch are you talking about? Is it a Patch of Hair on your

Back? If so, that could be what they call a Signature.

I hope this helps you. If you have any other Questions, please feel free to

ask them. I will do my best to try and answer.

Me

Nebraska, USA

mymocha@...

> Doesn't the Occulta mean skin covered or closed? So is my nerve damage

(bladder) from the SB or the TC? Which I guess the TC is because of the SB?

And what about the Lipoma is that part of the SB? And the patch as they call

it what exactly is that?

[Guest guest]

Well, it means that it is hidden in some way........but from what I have

learned, there can be some outward signs, but they are overlooked for

whatever reason.

It may be hard for some to deterime if ones damage is from Spina Bifida or

Tethered Cord, if a person has both. However, Spina Bifida doesn't really

worsen though, so I would say if you had certain problems from the get go,

those would be the ones from Spina Bifida. And the ones that came up along

the way, might be more related to Tethered Cord. And maybe there is damage

that can be done that is a combination of both.

From what I know, yes, your Lipoma could be your Spina Bifida

(Lipomyelomingocele, Lipomeningocele). Which, in turn, initially created

your Tethered Cord. But maybe this isn't what you have, I can't say for

sure. For myself though, my form of Spina Bifida is Myelomeningocele, not

with a Lipoma. Tethered Cord, for me, was created by the Closure Surgery

that was done after I was born. I did end up developing a small Lipoma

though, that was deemed not connected to my Tethered Cord at age 20.

Does that make any sense? lol

What kind of Patch are you talking about? Is it a Patch of Hair on your

Back? If so, that could be what they call a Signature.

I hope this helps you. If you have any other Questions, please feel free to

ask them. I will do my best to try and answer.

Me

Nebraska, USA

mymocha@...

> Doesn't the Occulta mean skin covered or closed? So is my nerve damage

(bladder) from the SB or the TC? Which I guess the TC is because of the SB?

And what about the Lipoma is that part of the SB? And the patch as they call

it what exactly is that?

[Guest guest]

Well, it means that it is hidden in some way........but from what I have

learned, there can be some outward signs, but they are overlooked for

whatever reason.

It may be hard for some to deterime if ones damage is from Spina Bifida or

Tethered Cord, if a person has both. However, Spina Bifida doesn't really

worsen though, so I would say if you had certain problems from the get go,

those would be the ones from Spina Bifida. And the ones that came up along

the way, might be more related to Tethered Cord. And maybe there is damage

that can be done that is a combination of both.

From what I know, yes, your Lipoma could be your Spina Bifida

(Lipomyelomingocele, Lipomeningocele). Which, in turn, initially created

your Tethered Cord. But maybe this isn't what you have, I can't say for

sure. For myself though, my form of Spina Bifida is Myelomeningocele, not

with a Lipoma. Tethered Cord, for me, was created by the Closure Surgery

that was done after I was born. I did end up developing a small Lipoma

though, that was deemed not connected to my Tethered Cord at age 20.

Does that make any sense? lol

What kind of Patch are you talking about? Is it a Patch of Hair on your

Back? If so, that could be what they call a Signature.

I hope this helps you. If you have any other Questions, please feel free to

ask them. I will do my best to try and answer.

Me

Nebraska, USA

mymocha@...

> Doesn't the Occulta mean skin covered or closed? So is my nerve damage

(bladder) from the SB or the TC? Which I guess the TC is because of the SB?

And what about the Lipoma is that part of the SB? And the patch as they call

it what exactly is that?