Re: 2nd Anniversary of TCS surgery

[Guest guest]

Hi,

As far as I know there is nothing to can do to ensure that the cord doesn't

retether. Hoever, I would think you should be seeing someone to check up on

things. We are from Canada and our daughter goes to a clinic once a year

just to make sure everything is okay. If the cord does retether it's best

to catch it as early as possible. Our surgeon told us, in our daughter's

case, the probability of a retether is greater than 50%. It is probably

different with every case but it does seem like retethering is quite common.

I'm no expert at these things, probably some of the other parents would know

better, but I would definitely want check ups to make sure everything is

still okay.

Carol - mom of Kennedy 3 1/2, Wesley 1

2nd Anniversary of TCS surgery

> Our son Evan was diagnosed at birth with tethered cord syndrome. Two

weeks later, we opted for him to have surgery to release the cord. Today is

the second anniversary of his surgery. We no longer see the surgeon - his

wish not necessarily ours. Our son has been fine as far as we can tell. We

are so uncomfortable that the cord will re-tether. Our surgeon doesn't feel

there will be any problems. Our surgeon tells us that the cord is unlikely

to re-tether. After reading all of the letters posted, it seems like it is

more common that we originally believed. Should we be doing something to

make sure the cord doesn't re-tether? Seeing a specialist? Dave and Kim.

>

>

>

[Guest guest]

My daughter is checked by a physical terapist, orthopedic surgeon,

urologist, neurologist, there may be more, We see a lot of doctors in two

days. Basicaly they are just looking for any changes or signs of

retethering. Some of the signs I have been told to watch for are

clumsiness, bladder/bowel trouble or changes, back pain. She has only been

in for 1 MRI and that was before her surgery at one month of age. I think

they would send her for another if they suspected retethering. So far so

good though. They also do a urodynamics test to check her bladder and

always send her for a renal ultrasound to make sure her kidneys are okay. I

hope this helps.

Carol

2nd Anniversary of TCS surgery

>

>

> > Our son Evan was diagnosed at birth with tethered cord syndrome. Two

> weeks later, we opted for him to have surgery to release the cord. Today

is

> the second anniversary of his surgery. We no longer see the surgeon - his

> wish not necessarily ours. Our son has been fine as far as we can tell.

We

> are so uncomfortable that the cord will re-tether. Our surgeon doesn't

feel

> there will be any problems. Our surgeon tells us that the cord is

unlikely

> to re-tether. After reading all of the letters posted, it seems like it

is

> more common that we originally believed. Should we be doing something to

> make sure the cord doesn't re-tether? Seeing a specialist? Dave and Kim

> >

> >

> >

[Guest guest]

What do they check your daughter for in the clinic? Are they running an MRI on

her? What signs do you watch for to see if the cord has possibly re-tethered?

Thanks for your feedback. Kim and Dave

2nd Anniversary of TCS surgery

> Our son Evan was diagnosed at birth with tethered cord syndrome. Two

weeks later, we opted for him to have surgery to release the cord. Today is

the second anniversary of his surgery. We no longer see the surgeon - his

wish not necessarily ours. Our son has been fine as far as we can tell. We

are so uncomfortable that the cord will re-tether. Our surgeon doesn't feel

there will be any problems. Our surgeon tells us that the cord is unlikely

to re-tether. After reading all of the letters posted, it seems like it is

more common that we originally believed. Should we be doing something to

make sure the cord doesn't re-tether? Seeing a specialist? Dave and Kim

>

>

>

[Guest guest]

Her cord has not retethered yet that we know of anyway. We are always

watching to make sure we don't notice any signs. She does have some

problems resulting form the tethered cord. She has bowel and bladder

complications. I started potty training her when she was almost two. She

did awesome for awhile and then started having accidents. I think she was

doing so well becasue it was new and fun to use the potty. After the fun

wore off she didn't go because she didn't feel like she had to. So she was

peeing her pants a lot. It was hard for me to understand because sometimes

she knew when she had to pee and other ties seemed to have no clue. Or I

would put her on the potty and she would go and then not even ten minutes

later she would have a n accident. Nobody has mentioned getting our son

checked but he had no visible symptoms like Kennedy did. She had a fat mass

on her lower back when she was born. I think they would look into it only

if he exhibited signs of tethered cord.

Carol

2nd Anniversary of TCS surgery

> >

> >

> > > Our son Evan was diagnosed at birth with tethered cord syndrome. Two

> > weeks later, we opted for him to have surgery to release the cord.

Today

> is

> > the second anniversary of his surgery. We no longer see the surgeon -

his

> > wish not necessarily ours. Our son has been fine as far as we can tell

> We

> > are so uncomfortable that the cord will re-tether. Our surgeon doesn't

> feel

> > there will be any problems. Our surgeon tells us that the cord is

> unlikely

> > to re-tether. After reading all of the letters posted, it seems like it

> is

> > more common that we originally believed. Should we be doing something

to

> > make sure the cord doesn't re-tether? Seeing a specialist? Dave and

Kim

> > >

> > >

> > >

[Guest guest]

If you don't mind us asking, has your daughter's cord re-tethered since her

surgery three years ago? Has she experienced a problems as a result of the

tethered cord? We haven't noticed any symptoms yet - that you've mentioned. I

would feel much more comfortable if our son would be seen by the specialists

that you've mentioned. We worry though when he trips or if he doesn't have a

regular bowel movement that there is some damage. It's so hard to tell though

when they are just two (and three). We spoke to our pediatrician this past

week. He is going to call the surgeon to see if there shouldn't be any follow

up.

Has anyone said anything about having your other child checked for tcs. We have

a seven year old girl (Hayley) and a five year old boy (Collin). We were told

that it is not genetic, and no testing of them was necessary.

Thanks for your correspondence - it's been helpful. Kim and Dave.

2nd Anniversary of TCS surgery

>

>

> > Our son Evan was diagnosed at birth with tethered cord syndrome. Two

> weeks later, we opted for him to have surgery to release the cord. Today

is

> the second anniversary of his surgery. We no longer see the surgeon - his

> wish not necessarily ours. Our son has been fine as far as we can tell

We

> are so uncomfortable that the cord will re-tether. Our surgeon doesn't

feel

> there will be any problems. Our surgeon tells us that the cord is

unlikely

> to re-tether. After reading all of the letters posted, it seems like it

is

> more common that we originally believed. Should we be doing something to

> make sure the cord doesn't re-tether? Seeing a specialist? Dave and Kim

> >

> >

> >