Re: No comments on article?

[Guest guest]

Bill said the following on 4/5/2006 9:36 PM:

> I'm surprised no one has commented on this story. I th ink it's amazing and

> hopefully a sign of things to come.

>

> http://www.cnn.com/2006/HEALTH/conditions/04/03/engineered.organs/index.html

>

>

>

First I had seen it, thanks for sending. It is amazing! One thing though

that I am curious about is, as far as I know, many spina bifida patients

have normal bladders, the problem is the nerve function interruption

that controls the bladder. I could be cured if they could grow some

nerve tissue to repair/replace what is damaged by TSC.

Rick

[Guest guest]

In a message dated 4/5/2006 11:36:15 PM Eastern Standard Time,

blast21@... writes:

http://www.cnn.com/2006/HEALTH/conditions/04/03/engineered.organs/index.html

Sorry, I was so excited that I sent it to all the groups I belonged to that

it would apply to, which unfortunately is quite a few... Several of the

children actually use Dr. Atala as their urologist Thanks for the link, if

you sent it!

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/)

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]

In a message dated 4/6/2006 12:23:18 AM Eastern Standard Time,

rick_lists@... writes:

One thing though

that I am curious about is, as far as I know, many spina bifida patients

have normal bladders, the problem is the nerve function interruption

that controls the bladder.

Rick, one thing about that proper nerve function, if you have a child who

has NEVER had proper nerve function to the bladder from day one, like you often

do with the typical open spina bifida most people mean when they refer to

spina bifida, it will not develop properly. The nerves need to function to

tell

the bladder to grow normally, and to allow the bladder to hold urine which

will stretch it and allow it to get larger. If the bladder always leaks, it

will not get large enough to hold a normal amount of urine for the age. If

the bladder always spasms, the bladder muscle will thicken and this will not

allow it to stretch also.

It is in cases like this that a bladder augmentation is done to allow a

child(person) a larger bladder to hold more urine, in the hopes that meds can

control the spasming/leaking and cathing will empty the bladder, since the

augment tissue doesn't push like the true bladder muscle.

I could be cured if they could grow some

nerve tissue to repair/replace what is damaged by TSC.

Wouldn't that be great! Some day it may happen!

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/)

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]

I printed out the article that was on the NPR site. I thought it was

incredible! I cannot help but

think of my young 21 month old granddaughter when I read this kind of things. I

so hope she

can live a somewhat normal life; fortunately she has a twin who is very healthy

and she patterns

off of her a lot. Hugs, Diane V.

No comments on article?

I'm surprised no one has commented on this story. I th ink it's amazing and

hopefully a sign of things to come.

http://www.cnn.com/2006/HEALTH/conditions/04/03/engineered.organs/index.html

[Guest guest]

I know - I wish stem cell research would be allowed to really go forward.

Seems like soo much good and so many possibilities can come from it.

_____

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of Diane Vaupel

Sent: Thursday, April 06, 2006 7:52 PM

To: tetheredspinalcord

Subject: Re: No comments on article?

I printed out the article that was on the NPR site. I thought it was

incredible! I cannot help but

think of my young 21 month old granddaughter when I read this kind of

things. I so hope she

can live a somewhat normal life; fortunately she has a twin who is very

healthy and she patterns

off of her a lot. Hugs, Diane V.

No comments on article?

I'm surprised no one has commented on this story. I th ink it's amazing

and

hopefully a sign of things to come.

http://www.cnn.com/2006/HEALTH/conditions/04/03/engineered.organs/index.html

[Guest guest]

conni60640@... said the following on 4/6/2006 5:57 AM:

> In a message dated 4/6/2006 12:23:18 AM Eastern Standard Time,

> rick_lists@... writes:

>

> One thing though

> that I am curious about is, as far as I know, many spina bifida patients

> have normal bladders, the problem is the nerve function interruption

> that controls the bladder.

>

> Rick, one thing about that proper nerve function, if you have a child who

> has NEVER had proper nerve function to the bladder from day one, like you

often

> do with the typical open spina bifida most people mean when they refer to

> spina bifida, it will not develop properly. The nerves need to function to

tell

> the bladder to grow normally, and to allow the bladder to hold urine which

> will stretch it and allow it to get larger. If the bladder always leaks, it

> will not get large enough to hold a normal amount of urine for the age. If

> the bladder always spasms, the bladder muscle will thicken and this will not

> allow it to stretch also.

>

> It is in cases like this that a bladder augmentation is done to allow a

> child(person) a larger bladder to hold more urine, in the hopes that meds can

> control the spasming/leaking and cathing will empty the bladder, since the

> augment tissue doesn't push like the true bladder muscle.

>

> I could be cured if they could grow some

> nerve tissue to repair/replace what is damaged by TSC.

>

> Wouldn't that be great! Some day it may happen!

>

>

sure makes sense to me Connie, thanks for pointing that out. I do not

have SB and am not familiar with the details other than just what it is.

Rick

[Guest guest]

In a message dated 4/7/2006 3:49:58 PM Eastern Standard Time,

rick_lists@... writes:

sure makes sense to me Connie, thanks for pointing that out. I do not

have SB and am not familiar with the details other than just what it is.

Rick, thankfully this is not an issue we have to deal with either

However, many children born with some of the issues that has DO have to

deal

with this, and I know of quite a few kids who have had the augmentation

done... I've learned so much from being on the different support groups, and am

so

thankful that there are so many options out there to deal with the associated

issues. Thank goodness for medical technology!!!

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/)

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]

I have been away for a while and I am catching up on posts....The need

for the new bladde stems from lack of nerve stim to the bladder

telling it to grow and mature. This is common with nerve compression.

Look at the leg and foot deformity such as tiptoeing and hammer toes...

Charnel

>

> Bill said the following on 4/5/2006 9:36 PM:

> > I'm surprised no one has commented on this story. I th ink it's

amazing and

> > hopefully a sign of things to come.

> >

> >

http://www.cnn.com/2006/HEALTH/conditions/04/03/engineered.organs/index.html

> >

> >

> >

> First I had seen it, thanks for sending. It is amazing! One thing

though

> that I am curious about is, as far as I know, many spina bifida

patients

> have normal bladders, the problem is the nerve function interruption

> that controls the bladder. I could be cured if they could grow some

> nerve tissue to repair/replace what is damaged by TSC.

>

> Rick

>