Re: urodynamics question

[Guest guest]

I have suffered with retention for the past 19 years. My bladder capacity

is very large. I have a neurogenic bladder. I could retain up to 800-900

cc's at times before I would feel like I had to urinate. Then when I tried

to urinate, I would find myself in retention. Other times, I would suffer

with frequency and urgency and lower abdominal and back pain. With the

frequency, I would find myself urinating up to 60 times/day.

Thankfully, I had a neurostimulator implanted in 1991. I don't have much

time to write at the moment, so I will send a response that I just sent to

someone else. I hope this helps you.

I am also sending this to the group, in hopes that it may help someone else

also.

This is in regards to Tethered Spinal Cord and Neurostimulator implants for

urinary dysfunction.

I saw Dr. Schmidt at the time. It was still experimental in 1991

and I actually had to go out of the protocol which was established at the

Cleveland Clinic and go to the doctor (Dr. Schmidt) who pioneered the system

to have it implanted. It is a long story, but how it was being tested at

the Cleveland Clinic didn't work for me. The best news, is the

neurostimulators have changed so much over the years.

Most Urologists are implanting what is called a InterStim system made by

Medtronic. It is actually very easy to implant and done with out-patient

testing and implant.

I think that if you checked with a couple Urologists in your area that you

shouldn't have any trouble finding a Urologist who does these implants.

They are very popular and a lot of doctors are familiar with them.

Also if you google the InterStim system, Medtronic has videos on line which

discuss and educate women and men on the system and why and how it is used.

I hope this helps.

Darlene

-- urodynamics question

My daughter (25) had a urodynamics test. she was told he retained 100cc of

urine. Not horrible, but not emptying her bladder completely. She changed

urologists as

the first one decided to ignore the kidney stone issue she was having. The

new urologist

did an ultrasound and said she is only retaining 40cc of urine and she has a

larger

capacity bladder than most people. He acted like that was a good thing, but

i have since

read that larger bladders can be indicative of issues. SHe has urine

retention issues and

now seems to have occassional leaking, as her underwear is wet at times and

there seems

to be no other explanation...the obvious other reasons for wetness are not

the case.. All of

this is very embarrassing for a 25 year old, recently married young woman,

so I am asking

the questions she I doubt she wants to " go there " . Is it odd to get two

different retention

amounts from these two tests? He made it seem like the ultrasound overruled

what the

urodynamics test said, and if that is the case why even bother doing the

urodynamics.

Should the news of having a larger than normal bladder be good news or is it

worrisome?

It seems no matter what test she has we get more conflicting information.

She was

diagnosed with a tight filum tethered cord at The Chiari Institute in

September. Dr. B

wanted her to get her kidney issues straightened out, but both urologists

seem content to

let her kidney stone stay in there. According to the ultrasound there is no

hydronephrosis

of the right kidney like her renal scan showed. Once again, this ultrasound

seems to be

the wonder test ruling out all sorts of diagnosis given by the more invasive

expensive

tests. Sorry to sound so sarcastic, just very frustrated here. I would

appreciate any ideas or

input.