Can anyone share their experience with ProACT (an AUS)?

I’m a member of a local support group, and one of our guys issued about insights or experience with ProAct implants for incontinence. Can anyone comment?

Interesting question. I'd never heard of the ProAct.
I've had an AMS 800 artificial sphincter for 6-months now and am quite satisfied with it.
I did some web searching and found the ProAct web site and it had some reference studies listed. I brought up one and it seemed fairly complete.
So not as to prejudice you or your friend I'll suggest you do the same.
FWIW here's the link to the study I found.
https://pubmed.ncbi.nlm.nih.gov/32249971/
The other studies should provide more info to help you.
Good luck to you, your friend and support group.
bob

About a year ago, I spent a hour talking with a urologist who specializes in helping people with incontinence. ProACT was not one of the half dozen techniques mentioned. I sure would like to hear more about its use and how people felt it worked.

It’s been around since being approved in 2015, so I am a little puzzled as to why it was not mentioned. I’m actually going to email that doctor and find out what they think about it.

@lavender560, fellow member @docwatson posted a similar question here:
- Experience with ProAct implants (an AUS) for incontinence?
https://connect.mayoclinic.org/discussion/experience-with-pro-act-implants/
Here's a study from 2022:
- ProACT in the management of stress urinary incontinence after radical prostatectomy. What happens after 8 years of follow up? monocentric analysis in 42 patients https://pubmed.ncbi.nlm.nih.gov/35390245/

You may also be interested in this related discussion:
- Any experiences with Artificial Urinary Sphincter (AUS) or Sling?
https://connect.mayoclinic.org/discussion/longer-term-sling-or-aus/
How is your husband's recovery going?

Thanks for this information Colleen, it’s so helpful to have!

The recovery is going well except for the incontinence issue. Not to sound ungrateful, but this has been mentally and physically life changing for him. I can see the toll it’s taken on every aspect of his routine. We’re very hopeful that a device like this will restore some sort of normality! Thanks so much for checking in. Our experience with Mayo in general was tremendously positive and having access to this forum helps enormously.

I have a terrible experience with Proact. After 7 months and all of the maximum adjustments, I am twice as bad as before. I was only doing one or two pads before. I should have just gone to Depend Underwear. I don't know what alternative I can or want to do now.

Thirty years ago I had a radical prostatectomy because of cancer. I lived with urinary leakage for next thirty years using Tena pads. I did not opt for collagen injections, the sling or AUS because of concerns that it might affect my sexual function. I was hoping for a less invasive therapy in the future.

At age 69 my sexual function was diminishing and my leakage was worsening up to five pads a day. In 2023 my patience paid off when I discovered the ProACT adjustable ballon incontinence therapy. Only one doctor at the University of Michigan Hospital in Ann Arbor, MI, was doing the procedure and I was his 26th patient. A few of his patients had RADIATION on their prostrate and he quickly learned the ProACT balloons were not affective for their treatment. If I had RADIATION he would not have done the surgery. I also opted to participant in the ProACT study for five years. In September 2023 I had my surgery and it took my doctor twenty minutes to place the two ProACT balloons. I had two small incisions in my perineum between my anus and scrotum. They were basically placed where my prostate had been removed. Each balloon was connected by a tube to a small port, one placed in each scrotum sack where they could be refilled. The tubs and ports were titanium and the balloons were made out of silicone. My doctor put 1 ml of saline solution to fill the balloons with the option of up to 8 ml adjustments post surgery. He had to put some saline in the balloons to keep them from pulling out. I strictly followed his after surgery guidance for six weeks. The only exercise I could do was walk and I did a lot of walking. Absolutely no lifting. I also drank a lot of water every day after my surgery. The first few days after my surgery it was very difficult to urinate, but part of that was due to the swelling. Plus my thirty years of leaking was a shock to my bladder. When I went back for my six week post surgery follow-up, I could fully empty my bladder. I told my doctor that I only leaked a few drops of urine during the day and I wore a light protective liner just in case. Sometimes, I would get a few drops of leakage when I would cough or bend over. My doctor did not need to put anymore saline in my balloons and I was extremely satisfied. I had 1 ml and I could go up to 8 ml by accessing the small filling ports in my scrotum. I went back for my six month and my one year follow up and had no leakage. I quit wearing a light liner after one year. My sexual function is intact, which made me very happy but age has diminished that some. Occasionally, I might get a sensation of having an urge to pee after going to the bathroom, but that goes away when I hold my urine longer. I am 16 months post surgery and I am extremely satisfied with the results. I have no pain from my ProACT balloons or filling ports and I don’t even notice they are there. I had no urinary track infections since the surgery. When I drink alcoholic beverages, I do not leak.

When I talked to my ProACT study coordinator I asked about the other participants in the study, she said they are not experiencing any problems to her knowledge and they are satisfied with their surgery. The only exceptions are the ones that had RADIATION treatment for their prostate cancer. ProACT has not been successful for patients that had RADIATION for prostrate cancer.

I did a lot of research on the four different types of surgery (AUS, Sling, Collage Injections and ProACT) for male incontinence. I chose ProACT because it is the least invasive, it can be removed easily (unlike the AUS and Sling that require a lot more surgery when they fail), it is adjustable, you don’t have to manipulate anything like the AUS, and it has been used in Europe for over 20 years. Reading the studies on all the devices ProACT works just as well and even better. The skill of the surgeon is very important for proper placement of the ProACT balloons.

ProACT has been covered by Medicare since 2017. BCBS of Michigan, my secondary insurer, would not cover it, stating it was experimental even though my Medicare paid. After two appeals with BCBS denying me, I appealed to Michigan Department of Insurance and Financial Services. They ordered BCBS to pay. The appeal is a public record on the internet. Type BCBSM 224917 to view the appeal. I hope this helps someone to make a decision on what surgery is best for them.

Hello, I just wanted to let you know your post has helped me and my husband tremendously. My husband (72) had prostatectomy 2 years ago and have been having urinary incontinence. We've been researching possible treatments and landed on ProACT. Our insurance (through my employer) denied the procedure and now we are in the middle of an appeal.

Both your experience of ProACT and your appeal case is really helpful. Thank you!

I asked my urologist to specializes in incontinence about ProAct And she said that it was so new that they really had not started using it yet.

Other people asked about ProAct In this forum, and nobody seem to be familiar with it.

Hopefully someone In this forum has had it and can comment.

I started taking Myrbetriq Twice a day and it has made a dramatic difference in my incontinence issues.