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

[Guest guest]

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@... <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

>

>

>

>

>