Re: Re:was I'd like to chat with some adults who have had bladder augme...

[Guest guest]

Dear ...In a way it is a blessing for me that these are now my

daughter's decisions..then again, if she is anything like what I was at 20,

the likelihood of wisdom is remote!! And, when there is little to no

agreement on what is wise, I just pray and give my opinion...and go on

praying...thank you so very very much for sharing your story. I would like her

to

ask, if i am paralyzed by this or lose control or bowel or bladder..will I

still say, " I am glad I took the risk. " That is my thought of how I will

phrase any concerns I have in the future. Plus respect that these are now her

decisions to make. hugs, randee

In a message dated 1/22/2011 7:07:41 P.M. Central Standard Time,

livedream_believe@... writes:

Ok.....I'm going to pipe in here....the last thing I want to do is

discourage anyone from being active...just know the risks and be ready to

accept

the consequences. I refused to give up my horsebackriding. I dont know if it

is due to delayed reaction from mixed spinal cord signals, muscle weakness

or what but I fell MANY times while riding. Not that my horses were crazy

or anything but any sudden movement by them and I was unable to adapt and

fell. I have broken my ankle, pelvis, sacrum, tailbone, and some ribs by

falling off of horses. The final ride was Oct 28, 2005 when I fell and broke

the sacrum and tailbone. I landed right on my TC surgical site and sustained

MAJOR spinal nerve damage...probably due to the lack of protection there

due to the missing spinous processes from my TC surgery. I almost wound up

with a colostomy as my bowels shut down for weeks. Since that day I have

been in excruciating nerve pain, worse than the TC pain before, had to

have another surgery and will unfortunately never be able to undo what I

did. I realize accidents happen and someone could walk out to their mailbox

and slip on the ice or get in a car wreck..etc. You cant live in a bubble.

But, I for one, will never ride again due to the nerve damage I sustained in

that fall, I cant. I cant hardly sit at all and will never ride a horse or

bicycle again (also no sexual penetration...I know thats pretty personal

but just to let you know the consequences) If you choose to do some of these

activities PLEASE be safe about it. Yes, use a therapy program where the

safety is utmost so you can continue to enjoy and participate instead of

limiting yourself even more with an injury.

The one thing I did get my NSG to say was that horseback riding would not

be a great sport for someone with tethered cord (with or without augment)!

LOL I keep trying to get them to give my daughter some reasonable

restrictions (in my eyes) but they won't!! I did meet someone I know, a

NSG,

at a

cocktail party who agreed that snowboarding wasn't a great idea, but I

can't get my daughter's NSG to say it!!! Overprotective Mommy, Randee PS

Dtr

now 20...pretty much doesn't matter what I think!

In a message dated 1/22/2011 9:51:24 A.M. Central Standard Time,

_jslapointe@..._ (mailto:jslapointe@...)

<jslapointe%40comcast.net> writes:

Thank you, Jodi! : ) I'm happy to hear that things are going so well for

you. It certainly makes the idea of augment less scary!

Did I ask you if the doctor gave you any activity restrictions.... like

someone told me you can't ride a horse after an augment. So I';m wondering

if

some activities or sports might be off limits.

Sorry If I already asked you that question!

Stacey

mom to Sofia age 5 TC, SA/CRS

>

> Stacey,

>

> I was told that the Dr. took part of my intestine to enlarge my bladder

and make

> the stoma. But I was also told that I didn't have my appendix, when I

was in the

> hospital last year for a bowel obstruction, so I'll bet that I do have

> the mitrofanoff. Yes. No problems. I do not have to have any kind of

scope. I

> just have to go to my urologist once a year to see how I'm doing. Right

after

> the surgery, I had to wean the " new " bladder into use. I cathed every 2

hours

> for a few days, then every 4, then every 6, to stretch the bladder. I

choose to

> cath every 4-5 hours now but can go 8 hours at night without cathing

(that's

> where I can sometimes get 800cc's). I used to flush with saline every

day for

> several months, then about once a month. Now I flush when I notice

things

> getting a little murky. I don't keep tabs on my electrolytes because I

wasn't

> told that I had to. And my Dr. would have told me if I needed to.

>

> Let me know if you have any more questions.

>

> Good luck!

>

> Jodi

>

> >Thanks, Jodi. : )

>

> Is the ileal conduit a 'new bladder' so to speak? Or is it the

mitrofanoff?

> Since you've mentioned such a large increase in volume, I want to assume

that

> the ileum was either used to make a new bladder or augment your native

one.

>

> So it's been about ten years and no problems? That's great to know. Do

you have

> to start yearly scoping at this point? I was told by one doctor to start

at five

> years and the other said ten.

>

> Do you flush your bladder with saline daily?

>

> Do they keep tabs on your electrolytes?

>

> Sofia needs the bladderneck procedure, mitrofanoff and possibly the

augment, and

> as you say, it's a big surgery, so we're looking into minimally invasive

options

> in the hope of making it as easy as possible on her.

>

> Stacey

> mom to Sofia age 5

>

>

>

>

> [Non-text portions of this message have been removed]

>

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[Guest guest]

As a parent of adults, I totally understand lol. Funny how we dont worry about

them any less the older they get huh?  I also understand being hardheaded and

wanting to live life to the fullest...in fact I have and continue to look into

options such as sidesaddle (still wont work), wagons, buggies etc so that I

can continue to enjoy horses...but I will be safer about it, I just cannot

sustain another fall. Prayer is good  

The one thing I did get my NSG to say was that horseback riding would not

be a great sport for someone with tethered cord (with or without augment)!

LOL I keep trying to get them to give my daughter some reasonable

restrictions (in my eyes) but they won't!! I did meet someone I know, a

NSG,

at a

cocktail party who agreed that snowboarding wasn't a great idea, but I

can't get my daughter's NSG to say it!!! Overprotective Mommy, Randee PS

Dtr

now 20...pretty much doesn't matter what I think!

In a message dated 1/22/2011 9:51:24 A.M. Central Standard Time,

_jslapointe@..._ (mailto:jslapointe@...)

<jslapointe%40comcast.net> writes:

Thank you, Jodi! : ) I'm happy to hear that things are going so well for

you. It certainly makes the idea of augment less scary!

Did I ask you if the doctor gave you any activity restrictions.... like

someone told me you can't ride a horse after an augment. So I';m wondering

if

some activities or sports might be off limits.

Sorry If I already asked you that question!

Stacey

mom to Sofia age 5 TC, SA/CRS

>

> Stacey,

>

> I was told that the Dr. took part of my intestine to enlarge my bladder

and make

> the stoma. But I was also told that I didn't have my appendix, when I

was in the

> hospital last year for a bowel obstruction, so I'll bet that I do have

> the mitrofanoff. Yes. No problems. I do not have to have any kind of

scope. I

> just have to go to my urologist once a year to see how I'm doing. Right

after

> the surgery, I had to wean the " new " bladder into use. I cathed every 2

hours

> for a few days, then every 4, then every 6, to stretch the bladder. I

choose to

> cath every 4-5 hours now but can go 8 hours at night without cathing

(that's

> where I can sometimes get 800cc's). I used to flush with saline every

day for

> several months, then about once a month. Now I flush when I notice

things

> getting a little murky. I don't keep tabs on my electrolytes because I

wasn't

> told that I had to. And my Dr. would have told me if I needed to.

>

> Let me know if you have any more questions.

>

> Good luck!

>

> Jodi

>

> >Thanks, Jodi. : )

>

> Is the ileal conduit a 'new bladder' so to speak? Or is it the

mitrofanoff?

> Since you've mentioned such a large increase in volume, I want to assume

that

> the ileum was either used to make a new bladder or augment your native

one.

>

> So it's been about ten years and no problems? That's great to know. Do

you have

> to start yearly scoping at this point? I was told by one doctor to start

at five

> years and the other said ten.

>

> Do you flush your bladder with saline daily?

>

> Do they keep tabs on your electrolytes?

>

> Sofia needs the bladderneck procedure, mitrofanoff and possibly the

augment, and

> as you say, it's a big surgery, so we're looking into minimally invasive

options

> in the hope of making it as easy as possible on her.

>

> Stacey

> mom to Sofia age 5

>

>

>

>

>