RE: New member hoping for info on bladder surgery

[Guest guest]

Gail.

I'm sorry to hear about your son's problems. I don't know for sure that this

can be done with males, but it can with females, so it seems it probably

could. I have known many people to have the bladder aug you talk about.

There is an option (when they do the surgery) to have the exit to the

urethra closed off - preventing leaking (but also preventing you to be able

to urinate normally if function returns).

Like I'm said, I'm not sure if this procedure can be done with males, or if

it can be done after the initial surgery. But, it is definitely something to

ask about. There should also be a possibility to have collagen injections

done to help close the urethra (well, it can work in women, not sure about

men, but again, something to ask the uro about).

Jenn

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of gail.carte

Sent: Monday, May 04, 2009 8:21 PM

To: tetheredspinalcord

Subject: New member hoping for info on bladder surgery

I am writing on behalf of my 35 yr old son who has a tethered spinal cord.

He was born with it but we didn't get a dx until he was almost 16. He has

nerve damage in both legs and has not been able to void since his first

surgery at 16. About 1 1/2 years ago he developed a false path cathing. The

Urologist that he saw in the ER advised him to have a surgery where he would

use part of an intestine to form a chimney. He was to be able to cath

through his belly button. He was so excited to have it done because the

doctor said it would not leak. However, it does leak and he has wound up

having to leave the tube in and using a leg bag. He also leaks out his

penis. He constantly has wet clothes and has oder to the point he won't go

out anymore. The doctor now tells him he doesn't know what to do, and that

he will consult with some other urologist but to date no help. He did go see

another urologist and he just blew him off and asked him why he didn't go

back to the other doctor. I know he should get another opinion but he only

has medicare and has so many doctor bills that we just wanted to gather some

info before trying to find another doctor. If anyone has any information on

any other procedures, or how this should have turned out I would appreciate

your input. Thanks, Gail

[Guest guest]

Thanks Jenn for your info. I don't think there's much chance of him ever being

able to void again. I know there has to be something that can be done but just

not sure how to find a doctor who really knows what they're doing. We live in a

rural area in Arkansas. He orginally had surgery at children's hospital in

Little Rock, but they don't follow adults, and it is so far to travel for follow

ups. Thanks again, Gail

________________________________

To: tetheredspinalcord

Sent: Wednesday, May 6, 2009 7:39:36 PM

Subject: RE: New member hoping for info on bladder surgery

Gail.

I'm sorry to hear about your son's problems. I don't know for sure that this

can be done with males, but it can with females, so it seems it probably

could. I have known many people to have the bladder aug you talk about.

There is an option (when they do the surgery) to have the exit to the

urethra closed off - preventing leaking (but also preventing you to be able

to urinate normally if function returns).

Like I'm said, I'm not sure if this procedure can be done with males, or if

it can be done after the initial surgery. But, it is definitely something to

ask about. There should also be a possibility to have collagen injections

done to help close the urethra (well, it can work in women, not sure about

men, but again, something to ask the uro about).

Jenn

From: tetheredspinalcord@ yahoogroups. com

[mailto:tetheredspinalcord@ yahoogroups. com] On Behalf Of gail.carte

Sent: Monday, May 04, 2009 8:21 PM

To: tetheredspinalcord@ yahoogroups. com

Subject: New member hoping for info on bladder surgery

I am writing on behalf of my 35 yr old son who has a tethered spinal cord.

He was born with it but we didn't get a dx until he was almost 16. He has

nerve damage in both legs and has not been able to void since his first

surgery at 16. About 1 1/2 years ago he developed a false path cathing. The

Urologist that he saw in the ER advised him to have a surgery where he would

use part of an intestine to form a chimney. He was to be able to cath

through his belly button. He was so excited to have it done because the

doctor said it would not leak. However, it does leak and he has wound up

having to leave the tube in and using a leg bag. He also leaks out his

penis. He constantly has wet clothes and has oder to the point he won't go

out anymore. The doctor now tells him he doesn't know what to do, and that

he will consult with some other urologist but to date no help. He did go see

another urologist and he just blew him off and asked him why he didn't go

back to the other doctor. I know he should get another opinion but he only

has medicare and has so many doctor bills that we just wanted to gather some

info before trying to find another doctor. If anyone has any information on

any other procedures, or how this should have turned out I would appreciate

your input. Thanks, Gail

[Guest guest]

To Gail....my email wont allow me to email you off list.

 

I dont know anything about what your son is going through...my son is only 16

moths old & in diapers with neurogenic bladder,TSC & IA.  But MAKE the uro or

any other Dr's write a referrel for the other Dr's. If his GMD has his best

interests at heart...he/she will not think 2x about it. 

 

I hope that he can find the help he needs. Also, I have heard rumors about

carbon undies that help with the scents. If he wears special

undergarmets....sprinkle them with baking soda. I have even heard that a small

amount of cat litter can help. I know it sounds bad...but if it works- he can

regain some freedom & no one would ever know.

Subject: Re: New member hoping for info on bladder surgery

To: tetheredspinalcord

Date: Wednesday, May 6, 2009, 11:25 PM

Thanks Jenn for your info. I don't think there's much chance of him ever being

able to void again. I know there has to be something that can be done but just

not sure how to find a doctor who really knows what they're doing. We live in a

rural area in Arkansas. He orginally had surgery at children's hospital in

Little Rock, but they don't follow adults, and it is so far to travel for follow

ups. Thanks again, Gail

____________ _________ _________ __

From: JBobin <jlbobingmail (DOT) com>

To: tetheredspinalcord@ yahoogroups. com

Sent: Wednesday, May 6, 2009 7:39:36 PM

Subject: RE: New member hoping for info on bladder surgery

Gail.

I'm sorry to hear about your son's problems. I don't know for sure that this

can be done with males, but it can with females, so it seems it probably

could. I have known many people to have the bladder aug you talk about.

There is an option (when they do the surgery) to have the exit to the

urethra closed off - preventing leaking (but also preventing you to be able

to urinate normally if function returns).

Like I'm said, I'm not sure if this procedure can be done with males, or if

it can be done after the initial surgery. But, it is definitely something to

ask about. There should also be a possibility to have collagen injections

done to help close the urethra (well, it can work in women, not sure about

men, but again, something to ask the uro about).

Jenn

From: tetheredspinalcord@ yahoogroups. com

[mailto:tetheredspi nalcord@ yahoogroups. com] On Behalf Of gail.carte

Sent: Monday, May 04, 2009 8:21 PM

To: tetheredspinalcord@ yahoogroups. com

Subject: New member hoping for info on bladder surgery

I am writing on behalf of my 35 yr old son who has a tethered spinal cord.

He was born with it but we didn't get a dx until he was almost 16. He has

nerve damage in both legs and has not been able to void since his first

surgery at 16. About 1 1/2 years ago he developed a false path cathing. The

Urologist that he saw in the ER advised him to have a surgery where he would

use part of an intestine to form a chimney. He was to be able to cath

through his belly button. He was so excited to have it done because the

doctor said it would not leak. However, it does leak and he has wound up

having to leave the tube in and using a leg bag. He also leaks out his

penis. He constantly has wet clothes and has oder to the point he won't go

out anymore. The doctor now tells him he doesn't know what to do, and that

he will consult with some other urologist but to date no help. He did go see

another urologist and he just blew him off and asked him why he didn't go

back to the other doctor. I know he should get another opinion but he only

has medicare and has so many doctor bills that we just wanted to gather some

info before trying to find another doctor. If anyone has any information on

any other procedures, or how this should have turned out I would appreciate

your input. Thanks, Gail

[Guest guest]

Gail,

I'm guessing its unlikely you'll find the proper MD in your rural area. You

may want to go to Oklahoma University (or is it U of OK?). My old

neurosurgeon left Emory and went to OK. His name is Mapstone. I'm sure some

of the most experienced uro's will be at the university. Also more willing

to think outside the box.

Jenn

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of Gail Carte

Sent: Wednesday, May 06, 2009 11:26 PM

To: tetheredspinalcord

Subject: Re: New member hoping for info on bladder surgery

Thanks Jenn for your info. I don't think there's much chance of him ever

being able to void again. I know there has to be something that can be done

but just not sure how to find a doctor who really knows what they're doing.

We live in a rural area in Arkansas. He orginally had surgery at children's

hospital in Little Rock, but they don't follow adults, and it is so far to

travel for follow ups. Thanks again, Gail

________________________________

From: JBobin <jlbobin@... <mailto:jlbobin%40gmail.com> >

To: tetheredspinalcord

<mailto:tetheredspinalcord%40yahoogroups.com>

Sent: Wednesday, May 6, 2009 7:39:36 PM

Subject: RE: New member hoping for info on bladder surgery

Gail.

I'm sorry to hear about your son's problems. I don't know for sure that this

can be done with males, but it can with females, so it seems it probably

could. I have known many people to have the bladder aug you talk about.

There is an option (when they do the surgery) to have the exit to the

urethra closed off - preventing leaking (but also preventing you to be able

to urinate normally if function returns).

Like I'm said, I'm not sure if this procedure can be done with males, or if

it can be done after the initial surgery. But, it is definitely something to

ask about. There should also be a possibility to have collagen injections

done to help close the urethra (well, it can work in women, not sure about

men, but again, something to ask the uro about).

Jenn

From: tetheredspinalcord@ yahoogroups. com

[mailto:tetheredspinalcord@ yahoogroups. com] On Behalf Of gail.carte

Sent: Monday, May 04, 2009 8:21 PM

To: tetheredspinalcord@ yahoogroups. com

Subject: New member hoping for info on bladder surgery

I am writing on behalf of my 35 yr old son who has a tethered spinal cord.

He was born with it but we didn't get a dx until he was almost 16. He has

nerve damage in both legs and has not been able to void since his first

surgery at 16. About 1 1/2 years ago he developed a false path cathing. The

Urologist that he saw in the ER advised him to have a surgery where he would

use part of an intestine to form a chimney. He was to be able to cath

through his belly button. He was so excited to have it done because the

doctor said it would not leak. However, it does leak and he has wound up

having to leave the tube in and using a leg bag. He also leaks out his

penis. He constantly has wet clothes and has oder to the point he won't go

out anymore. The doctor now tells him he doesn't know what to do, and that

he will consult with some other urologist but to date no help. He did go see

another urologist and he just blew him off and asked him why he didn't go

back to the other doctor. I know he should get another opinion but he only

has medicare and has so many doctor bills that we just wanted to gather some

info before trying to find another doctor. If anyone has any information on

any other procedures, or how this should have turned out I would appreciate

your input. Thanks, Gail