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Neurogenic Bladder Problem.....Solved!

suzybarb
  • By suzybarb
  • Posted May 7, 2008 at 7:37 pm · 10 replies
  • In Treatment
  • Shared with the public
0 Recommendations

I have dysautonomia, and have had it for many years. One of the most problematic issues it has caused is the fact it stopped my awareness that my bladder is full, and so 3 or 4 times a day I would sit on the toilet and "bear down", just like I was delivering a child, to push the urine out.

My neurologist sent me to a urogynocologist, who, after testing me, suggested I have an Interstim installed. I did so, last week.

For the first time in 15 years, the awareness comes to me that..."hey...I should find a toilet soon, I have to pee!!" It's wonderful, and it's one less problem I need to deal with.

Any questions, comments etc. please email me @
barb.adler@cox.net. Thanks!

Explore topics in this discussion:

Interstitial cystitis Surgery Pain Dysautonomia Neurogenic bladder

10 replies

saints1

My husband has Nurogenic Bladder and has to catherize twice a day. I did research on the internet and found the interstim procedure and ask his urologist about it and he said that he is a candidate for it. My husband is very depressed about the situation and doesn't feel that there is any hope for him ever not having to catherize himself and he just wants to give up. How is the interstim working for you? Are you still on the trial period or has it been put in place permanently? Are you able to empty your bladder now? I need to try to find a way to give him hope. You can e-mail me if you like at cleofet@hotmail.com or here I guess. Thanks and God bless

Maggie2300

Hi Barb

I was wondering the same, I still have to see my urologist, but I am still wondering if it could cause more nerve damage, as the meditronics pain stimulator which has been withdrawn apparently. How are you going, good I hope

Magie

suzybarb

Hi to Both of you. I had the Interstim installed about one month ago. The surgery was quickly done, and I was out of the hospital about 6 hours after I arrived.

There are 4 programs, and a vast range of settings. I started out on program 1 with an assortment of settings which allowed me to raise the stimulation or lower it, depending on the reaction I have.

I have gone back to the MD's office 3 times, to have the program changed. I still have not decided on which program and which intensity is best for me,
BUT, I now have the urge to pee, and the ability to pee, which I did not have before surgery.

This device is very complicated to use to decide which setting is best. The bottom line is that with it in me, I feel the urge and I am able to pee. What I have been doing for the last 6 weeks is to perfect the program.

I would tell everyone that this is the perfect way to solve the problem.

Maggie2300

So you have not noticed any side effects, except good ones at all, and no nerve damage. Guess I am super careful as my problem was caused by an op for a prolapse which supposedly didn't go anywhere near the nerves in my spine, but I ended up with high blood pressure and not peeing
Thanks again
Magie

Dawn54

I have overactivebladder and interstitial cystitis. I go more than 10+ times to pee and the interstitial cystitis
makes me go alot. My bladder still does not empty so my urologist told me about the Interstim Implant. I am going to have the implant done soon. I would appreciate feedback!
Anne

kikip

I have been seeing different urologists for the last year and a half in hopes of discovering the reason I can't empty my bladder. It just happened: there was no surgery or injury. I went to the Cleveland Clinic's top urologist this week with a theory I developed after researching the connection between herpes zoster and neurogenic bladder. The urologist there shot it down, gave me some tips about catheter use, and said to consider InterStim.
I have two questions: 1. Does anyone out there have an unknown cause for their neurogenic bladder? I can pee some of the time, but only a little comes out.
2. For those of you who are using InterStim, do you have control once you feel the urge to urinate? Also,
do you have to urinate in the middle of the night?
Thanks so much
ccheffler

Dawn54

I am scheduled to get the Interstim implant on January 8th and I am looking forward to not have to go so often and getting up 4 times every night. Is the programmer real difficult to operate? Have you found the correct setting for you? How long did it take to recover from surgery? How long does it take to do the surgery and recovery?
Thanks again
Anne

pbridge

im debating on getting an interstim , but ive heard a lot of good things & bad things about them , i know you cant have an mri, or be around storms & lightning , is that true,?? dr, wants me to have one , but i dont know what to do, what i need is something for pain ,& there not for pain, i suffer so bad day & night,, what do all you do for your awful pain ,?? please let me know , as i sure could use some good advice, i dont want steroids as they give me shingles, ive got a apt next wk with a pain dr, so i dont know what he will want to do, is there other pain shots they can give besides steroids ?? i appreciate some advice & help , thank you pbridge

JaneR

Hi Maggie,

Still working on the letters to Medtronic and others about the nerve damage from the device.

Good to know that the pain device has been withdrawn.

I want to know what they are going to do about this interstim.

I am receiving between 10 and 30 e mails aday about it.
I had great help from it unitl it interacted with another medical device and suffered ever since.

Talk to you all soon

Jane R

Dawn54

I've had my Interstim since July 9th and I am having good results. It is my second implant and I'm getting much better results with this one than I did the first one.

I think that the main problem is the wires. They can get tangled up easily by twisting or bending over too much. That is the reason I had to have the 2nd inplant.

Take care,
Dawn

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