Anyone have sacral neuromodulation (InterSTIM) for bladder issues?

Posted by cindybp @cindybp, May 16, 2024

I have a neurogenic bladder with idiopathic urinary retention. I’ve had two cystoscopies that were negative for problems except my bladder is floppy and enlarged. I’ve been through urodynamics and my bladder has limited functionality. They’ve recommended the MedTronic InterSTIM (I believe that is correct).

I’m reluctant to proceed with this because I want to know what caused this problem. Is it the same reason I have IBS-C? I understand idiopathic means they don’t know why, but I don’t want to focus on the problem if it’s part of a bigger picture. Is it possible I have a neurological disease like Parkinson’s or MS?

I’d sincerely appreciate hearing from others who’ve experienced this?

Interested in more discussions like this? Go to the Bladder Conditions Support Group.

cindybp | @cindybp | May 24, 2024

Does anyone have the Medtronic InterSTIM? Is it working well for you?

hbrajendra | @hbrajendra | May 26, 2024

I am also going through the same problem since about almost 6-7 years. I have seen more than 6-7 urologists. I have been through several procedures. Drugs have not helped me a bit. Procedures like Urolift or TURP (I hope I am using
The correct acronym). One Urologist strongly recommended the InterSTIM. It is fairly new procedure. The patient has to tolerate carrying all the time on the back of your body. I thought this would be inconvenient. If anybody has any experience of using this InterSTIM device, I would like to know. Pl. respond

cdhmri5 | @cdhmri5 | Sep 28 6:07pm

In reply to @cindybp "Does anyone have the Medtronic InterSTIM? Is it working well for you?" + (show)

@cindybp Hi, I just had the Interstim surgery this past Monday 9/22; it is working, but I need to wait for my post op appointment to start making adjustments. During my initial trial, I did feel about a 50% improvement in my frequency/urgency symptoms, but so far post surgery it's not been that good... again, hoping for better performance once we start making adjustments.
I see you wrote this back in May, have you had surgery since then?

cindybp | @cindybp | Sep 28 10:02pm

Thank you for writing. I have opted not to follow the recommendation for the InterSTIM.

I am taking Methenamine to prevent UTIs and have been very satisfied with this approach for my problem. My bladder is under active and thus oversized and my issue is non-urgency. I drink about 100 oz water daily so I go regularly. I’m retired so I think nothing of it. My previous life as an Ed Tech at school no doubt contributed to my condition.

I hope you post again to let me know how you make out with your new device. You’re the first person I’ve ever heard from. Thanks again.

heaviside | @heaviside | Nov 2 2:07pm

In reply to @cdhmri5 "@cindybp Hi, I just had the Interstim surgery this past Monday 9/22; it is working, but..." + (show)

@cdhmri5
Hi
I am an 82 year old male going through the InterStim test for a week next tuesday, 11/4/2025. I am curious about how you feel about the InterStim now. Did the performance improve after adjustments?

thanks for any advice you can give

jerseymom71 | @jerseymom71 | Nov 4 10:57am

In reply to @cindybp "Does anyone have the Medtronic InterSTIM? Is it working well for you?" + (show)

@cindybp
Hello Cindy,
My name is Heather, and I currently have InterStim. I'm currently on my third Medtronic Sacral Neuromodulations Therapy devices. The latest implant date for me was 10/2023.

So, I'm happy to help answer any questions you may have.

Dolly Jane | @dollyjaneprenzel | Nov 5 1:36pm

I have the InterSTIM device. The battery lasted for a year and cannot be recharged. I think I am going to have the device removed. Was not all that helpful. Good luck!

heaviside | @heaviside | Nov 6 12:50pm

In reply to @jerseymom71 "@cindybp Hello Cindy, My name is Heather, and I currently have InterStim. I'm currently on my..." + (show)

@jerseymom71
hi Heather
I am the 82 year old male who is in the midst of a trial of the interstim.

I had two two wires implanted last Tuesday 11/4/2025, will have them out next Tuesday, and looking to see the improvement.

so far some but it is improving as I turn up the current in the wires.

If I get to 50% improvement I will almost certainly go for the permanent implant.

could I ask you why you are on your third? Is it battery failure? Do you like the results?

thanks

John

jarviscloutier | @jarviscloutier | Nov 7 12:53pm

In reply to @cindybp "Thank you for writing. I have opted not to follow the recommendation for the InterSTIM. I..." + (show)

@cindybp I have the same issues as you, bladder doesn't empty completely-enlarged. I drink a lot of water. I have to self catherize once a day, I get UTI's frequently. Urologist brought up the Interstim again yesterday, was originally given info on it 10 years ago. It would be SO nice to have someone with the same issues to talk to about this stuff! I'm curious about the med you are taking for UTI's, going to read up about it. How long have you had bladder issues? I have so much I want to ask you.