1. < Prostate Cancer
Profile picture for soli

I would love to hear about your InterStim experience: good or bad.

Posted by soli @soli, Sep 14 3:05pm

I had prostate surgery last September, and my PSA remains “undetectable” at the one-year mark, although I have some risk of recurrence because of adverse pathology and a high Decipher score.

I’ve had overactive bladder (OAB) for decades, and unfortunately, it has not responded to medications, supplements, PTNS, or even Botox. I’m scheduled to have an InterStim trial in November.

I’m somewhat leery of undergoing yet another invasive procedure. The main reason I’m willing to consider it is that if the two-week trial does not significantly improve my OAB symptoms, the device can simply be removed rather than committing to a permanent implant.

I’d love to hear about the experiences—both good and bad—of anyone who has tried or is currently using InterStim. How well did it work for you, and did you experience any significant problems or side effects?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 25 8:18pm

@soli, you may wish to review this related discussion:
- Anyone have sacral neuromodulation (InterSTIM) for bladder issues?https://connect.mayoclinic.org/discussion/interstim/

REPLY
Profile picture for soli
soli | @soli | Sep 25 9:24pm

Given that I haven’t yet heard from anyone who has tried InterStim—either the trial or permanent implantation—without encountering some significant issues, I’m becoming even more reluctant to go ahead with the trial in November. That said, I’d still really like to hear about other people’s experiences, both positive and negative, before making my decision.

REPLY
1 reply
Profile picture for denkea
denkea | @denkea | Sep 26 6:15am
In reply to @soli "Given that I haven’t yet heard from anyone who has tried InterStim—either the trial or permanent..." + (show)
Profile picture for soli @soli

Given that I haven’t yet heard from anyone who has tried InterStim—either the trial or permanent implantation—without encountering some significant issues, I’m becoming even more reluctant to go ahead with the trial in November. That said, I’d still really like to hear about other people’s experiences, both positive and negative, before making my decision.

Jump to this post

@soli
I had a Medtronics SNS implant installed in March of this year. I tried all the programs on the controller and then shut it off in June.

Now I need to get with my surgeon and have it removed.

Nuff said.

REPLY
Profile picture for soli
soli | @soli | Sep 26 8:13am

Thanks for sharing your experience. It’s always very helpful to hear directly from other patients. Doctors have the medical expertise, but patients often have unique insights into how much a procedure actually helped them—or didn’t help them—in their day-to-day lives, and what the real world side effects are.

I wish you the very best of luck moving forward!

REPLY
Profile picture for jasonfarmer
jasonfarmer | @jasonfarmer | Sep 26 4:47pm

Early 2025 or so I got the axonics implant for oab I also have minor urinary leaking. I am very happy that I did I went for around 16 up to 18 trip to bathroom to pee after implant even now 8 to 10 I have even gone up to 4 or 5 hours without bathroom, I can’t tell you how happy that make me. Granted 8 is probably my average. Trail surgery and permanent placement surgery was not bad did bruise where he tunnel for shocker to probs but pain was minimal. Every once in a while if I sit wrong it can cause a little discomfort where the battery is but not very often does that happen. I worried more than I needed because it was not to bad. I did recharge battery because it is smaller and go @ 9 months between charges. It didn’t help with my incontinace as I hoped. It has made my life easier and more enjoyable.

REPLY
Profile picture for soli
soli | @soli | Sep 26 9:06pm

Thanks for sharing your experience with the Axonics implant. It’s encouraging to hear that it substantially reduced your OAB symptoms without causing any persistent or intolerable side effects.

I wish you the very best of luck moving forward!

REPLY
Profile picture for tbp64msncom
tbp64msncom | @tbp64msncom | Sep 27 7:40am

I had aggressive prostate cancer that spread to my bladder neck. The surgeon removed the lower part of my bladder which decreased my bladder capacity and led to OAB, bladder spasms that caused leakage, and chronic pain. The Interstim trial successfully eliminated my spasms and some of the urgency, so I went ahead with the permanent implant. That was 1 year ago and I'm able to keep the setting on a very low .3, never feel it tingling, and I still don't have any spasms. It didn't help with the pain unfortunately, and I can feel the battery and one of the wires under my skin, but it doesn't cause any problems. Overall I'm glad I did it. The surgery itself wasn't bad, but I was pretty sore for a couple of weeks. I'd say if you were happy with the results of the trial you'll be happy with the results of the permanent implant. Hopefully this helps.

REPLY
2 replies
Profile picture for tbp64msncom
tbp64msncom | @tbp64msncom | Sep 27 7:42am
In reply to @tbp64msncom "I had aggressive prostate cancer that spread to my bladder neck. The surgeon removed the lower..." + (show)
Profile picture for tbp64msncom @tbp64msncom

I had aggressive prostate cancer that spread to my bladder neck. The surgeon removed the lower part of my bladder which decreased my bladder capacity and led to OAB, bladder spasms that caused leakage, and chronic pain. The Interstim trial successfully eliminated my spasms and some of the urgency, so I went ahead with the permanent implant. That was 1 year ago and I'm able to keep the setting on a very low .3, never feel it tingling, and I still don't have any spasms. It didn't help with the pain unfortunately, and I can feel the battery and one of the wires under my skin, but it doesn't cause any problems. Overall I'm glad I did it. The surgery itself wasn't bad, but I was pretty sore for a couple of weeks. I'd say if you were happy with the results of the trial you'll be happy with the results of the permanent implant. Hopefully this helps.

Jump to this post

@tbp64msncom
Mine is Medtronic and their tech is great. She gave me her cell and we talked several times in the first month.

REPLY
Profile picture for soli
soli | @soli | Sep 27 8:54am
In reply to @tbp64msncom "I had aggressive prostate cancer that spread to my bladder neck. The surgeon removed the lower..." + (show)
Profile picture for tbp64msncom @tbp64msncom

I had aggressive prostate cancer that spread to my bladder neck. The surgeon removed the lower part of my bladder which decreased my bladder capacity and led to OAB, bladder spasms that caused leakage, and chronic pain. The Interstim trial successfully eliminated my spasms and some of the urgency, so I went ahead with the permanent implant. That was 1 year ago and I'm able to keep the setting on a very low .3, never feel it tingling, and I still don't have any spasms. It didn't help with the pain unfortunately, and I can feel the battery and one of the wires under my skin, but it doesn't cause any problems. Overall I'm glad I did it. The surgery itself wasn't bad, but I was pretty sore for a couple of weeks. I'd say if you were happy with the results of the trial you'll be happy with the results of the permanent implant. Hopefully this helps.

Jump to this post

@tbp64msncom

Thanks 🙏 for sharing. I am glad the implant improved your quality of life.

REPLY
Please sign in or register to post a reply.