Problems with Artificial Urinary Sphincter (AUS) install: Tips?

Was your husband having any problems like this before having the AUS installed? It is disabled for the first three or four weeks so that you pee normally, the AUS is supposed to be wide open. Do you know if the doctor had to manipulate the AUS in order to put in the catheter? That would mean it had been closed instead of being left wide open. You can do things with the button on the AUS that can cause the AUS to close until you pump it up. I have the instruction here for how to open it up and how to close it down, not all that difficult to do.

No, he wasn't having an issue before the AUS was done. I dont know if the doc manipulated the AUS before putting the catheter in. He called this morning and said he thinks it is happening because the area is still swollen and needs to calm down. He said it is fairly common and he will see him next Friday. I feel somewhat relieved. Thanks for your reply!!!

@mirsy
I have heard it gets real swollen. A warning for me, I will have one installed early next year and I now know that that’s possible.

Thank goodness for this site. It is so good to hear from others who have been through it!!!!!

The TLDR is: I believe swelling from the surgery is probably putting enough pressure on his urethra to cause his inability to void. When the swelling subsides, he'll start leaking again until they activate the AUS

The longer version is I have not had an AUS implanted. However I've had two different surgeries to address incontinence following a prostatectomy. Of note is that prior to all this I had a neurogenic bladder as the result of a spinal cord injury 16 years ago and have been completely dry but having to do clean intermittent catheterization 4-5 times a day. Prostatectomy left me severely and completely incontinent. The first was a Bone Attached Mesh Sling (BAMS) commonly referred to as sling surgery. This isn't a normal solution for severe incontinence but following urodynamics testing my urologist was advising the goal was to get me back to using intermittent catheterization through the least invasive surgery possible. Following the sling surgery and removal of the foley cath 2 days later I was stunned and thrilled to find my self--dry, using intermittent catheterization to empty my bladder for the first time in nine months. Nine months of changing Depends disposable underwear every 2 hours had been a nightmare. Unfortunately, after a few days I began to start leaking again and after 2 weeks was leaking quite a bit (except at night--thank you gravity). While I had achieved a marked improvement downgrading my incontinence to moderate from severe it turns out the first weeks remarkable continence was due to swelling from the surgery, once all the swelling went away the incontinence increased to moderate.

My second surgery was the implant of Uromedica ProAct dual balloon adjustable continence therapy devices. They are implanted at the neck of the urethra with only a nominal amount of fluid in the balloons to begin with. After 5 weeks I go back to the office and the doc starts adding fluid to the balloons to add pressure to the urethra. This process can go on for a few months as they titrate up the amount of fluid to achieve the desired results. Mine were implanted two weeks ago. Immediately following the surgery I was completely dry for about 5 days and then as swelling started to go down I started leaking again. Still better than just prior to the surgery but I won't be surprised if it gets back to the moderate level prior to balloons being adjusted for the first time. In my case, I'm hoping the balloon volume can be adjusted mimic what I was experiencing immediately post surgery.

Good luck to you and your husband! Your support is so important.

@fkm
One benefit of ProACT Is that they can adjust the balloons so they can have a tighter grip on the urethra. Have you had that adjustment done since you’re leaking still? Other people have reported in this forum that they had them put in and they worked really well for them. One person said they had to have the balloons adjusted more than once but it worked for them.

The problem with ProACT Is that it has a problem when you have radiation? That makes the urethra harder and makes the balloons not very effective. A urologist who specialize in incontinence did a one hour Conference about his experience with different techniques. He said that when. ProACT came out he started putting it in a lot of people. Then after a while he realized that It didn’t work with those that had radiation. The hardening of the urethra made it unable to tighten down enough to prevent the incontinence problem. Must admit I had been planning on asking my urologist to put that in, but now I’ve requested an AUS.

Definitely would like to hear more about your experience.

@fkm Thank you so much for your detailed reply. It sounds like your situation after surgery is similar to my husbands. My question now is the urologist wants to take the catheter out this coming friday the 19th. What if the uretha is still swollen. Would it be better to wait a little longer? He had the catheter reinserted 7 days ago. Is that long enough for swelling to go down? Also want to mention the last catheter put in by a urologist was a size 14. All his previous ones were 16. The size 14 is much more comfortable for him!!!! Why didnt they they think to try a smaller one - instead he had to suffer for almost 4 mos. Now I dont feel like we can really trust the urologist who did the AUS and we have to see him again on friday when he wants to remove the catheter. I just dont want my husband to have to suffer any pain again as he has been through alot with this situation. Any advice? Will say a prayer your situation will become much better for you!!!!! Thanks again!

@jeffmarc I'm just two weeks out from the implants, so the balloons only have a nominal amount of fluid in them. First adjustment on Jan 6, second appointment on the books for Feb 6. Hopefully one or two adjustments will be all I need. The post prostatectomy pathology report was very promising and a couple of PSA tests register undetectable. I know that things can change and I realize that radiation would change things. But right now dealing with the problem as it is . ProAct is easily reversible if need be.

I will keep the group apprised of results. I'm hopeful. If it doesn't work, nothing left but the AUS. They say that is the "gold standard" but it is not without downsides.

@mirsy A lesson I learned 16 years ago after I broke my back and suffered a spinal cord injury was that the patient must advocate for themselves. If it doesn't sound right, speak up, if you have questions, ask them, if you'd like to try something different, ask them. View it as giving your doctor more information to work with and let them know what is important to you (and your husband). As for swelling, when my testicles returned to their normal size I knew the swelling was gone. I have a very good idea how my testicles feel and definitely know whan they are swollen, even a little. I think most men are very aware of what swollen and not swollen feel like with high degree of precision! I don't think the urologist will remove the catheter and let your husband leave before a voiding test. They will likely fill him up with water through his catheter, remove the catheter and measure how much he can void before they let him go home. Good luck to you and him, he is lucky to have you and lucky to have you advocating for him!

I got AUS and IPP implants last January in a single surgery. The time before actually using them was six weeks with four weeks before cycling the IPP. During the first couple of days, my incontinence got less severe, but returned until they turned it on. I had minimal swelling or bruising from the operation and healed very quickly. If your husband had a lot of pbruising or swelling, it makes perfect sense that he would have difficulties. BTW the AUS has been wonderful. I only need one thin pad a day now instead of five or six large pads. It has been a huge improvement in my quality of life. My surgeon could have made the cuff tighter so that I would not need any type of pad at all, but since I have had radiation to the area, she did not want to risk possible erosion of the cuff into my urethra over time.