Artificial sphincter: Was it difficult to learn how to use? Tips?

Posted by peterj116 @peterj116, Dec 18, 2024

How difficult was it to learn to use?
I had another visit to the surgeon yesterday & showed him a spreadsheet from the last week, showing uncontrollable leakage of around 500ml per day. He didn't think that was a big deal (3 months post-op) and said that I'll just have to put up with it.

After 5 or 6 training sessions with PT, I still can't move my pelvic floor at all. He said he's never had a patient who can't exercise his pelvic floor muscles. Well, I can't. I can't be the only one in the world.

He's referred me to a "sphincter specialist" who will "assess" me.
I dread to think what that involves.
But I may be able to get one installed 9 months after surgery, rather than wait for a year of uncontrollable incontinence (can't see me living through a year of this).

But then he said that he doesn't know if I'll be able to manage the artificial sphincter - implying that I'm so stupid & uncoordinated, I won't be able to push a button.

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@bwjb

Hi, I had AUS installed 2/10 and have it activated tomorrow 4/3. I have been relatively lucky I guess in terms of not having had any infections to the perineal sutures even though I was going through 6 pads a day. Bruising to scrotum was severe for several weeks to the extent that it enveloped my penis for a while and at times turned turtle or at least looked uncircumcised. I am still very concerned about the activation. The device is too high in the scrotum to hold the 2 tubes at the top while activating the pump. Wish me luck tomorrow.

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I was activated yesterday and so far am very pleased. There is a definite learning curve here but was assured this will get easier to access as time goes on. My surgeon did well…

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First to bwjb,
Good luck tomorrow. If like mine it should be no big deal and a relief from so many pads.
To all,
I've seen reports of some less than perfect outcomes but mostly very successful. I had no bruising and no particular post-op pain. I have a great surgeon for sure. Final results can vary but best outcome is no leakage. Some stress leakage or direct pressure on scrotum and area can cause some (I can't use a traditional bicycle seat!). I use a very thin pad changing once a day. Often find it dry!
But like the old adage:
No matter how you shake
No matter how you squeeze
The last drop goes
In your BVD's
Life should be good afterwards and all of us in the AUS club are on your side!!!

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Hi, I had AUS installed 2/10 and have it activated tomorrow 4/3. I have been relatively lucky I guess in terms of not having had any infections to the perineal sutures even though I was going through 6 pads a day. Bruising to scrotum was severe for several weeks to the extent that it enveloped my penis for a while and at times turned turtle or at least looked uncircumcised. I am still very concerned about the activation. The device is too high in the scrotum to hold the 2 tubes at the top while activating the pump. Wish me luck tomorrow.

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Hey pmcharles, I have responded before but thought I would add more. I had the AMS800 implanted Jan 14th of this year. I had no infections from the surgery and was very careful to use antiseptic soaps for washing and changed pads often. I had some rather severe shooting pains for about 4 weeks and was concerned I had made a bad choice in having the surgery. My doctor said my recovery was the worst he had heard of and prescribed Gabapentin which is an epilepsy medicine to calm nerves. We delayed activating until 8 weeks. The pains went totally away and I now have total control of my needs of urination. I would add, if you are having great discomfort in the recovery don’t hesitate to ask for strong pain pills. I did not and wished I had.

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I'm 73, had radiation and surgery and have had my AUS a couple of years. I went from from 12 or so large pads each day to 1 or 2. There is surgery recovery, as normal. It was more annoying than painful.
Once healed and the device was activated, I mastered it in a couple of days practice, one had or two, sitting or standing. It's great. I did not have infection or any other problems. For me, it was a very good decision and improved my life tremendously.

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@lee61

Hey pmccharles I had the AUS surgery 4 years ago today. Yes you will leak until the AUS is activated in 6 weeks. My incision in scrotum to rectum did get infected from wet pads. So maybe try switching pads out more.? Bruising will be ugly, I was black and blue above penis where incision was for the fluid balloon by bladder and penis and scrotum was bruised. But it will go away and I used Advil/Tylenol for the pain. And be careful sitting, the cuff in the perineum doesn’t have much skin for protection. Same has pump in scrotum, be carful sitting down. I use 1 thin pad in morning for my walk and 1 thick pad for the rest of day.. no pad at night, I get up 1 time at night to empty bladder . Just grab the 2 tubes and squeeze the pump 1-2 times and bladder empty’s. I was 59 when I got my AUS and a friend was 75 when he got his AUS. Another friend went to Mayo to get his because he had radiation years ago. We’re all happy with it.

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Thank you Im nervous about this. I still can stop and start flowing but any stress on lower part I spurt 10 LG pads a day now with clamp standing up causes a spurt. Trying to determine if I need to have AUS. Guess I might just be rationalizing sure sounds like you all did well to have the AUS put in. Thanks again any info about this is helpful right now I can not even go out to dinner. 6 weeks after April 14th sounds good. Looks like the Boston scientific 800 unit is the best?

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@pmccharles

Good Day.
I am looking at the operation on april 14th 2 weeks from now. have been using 5 small pads a day for 3 years now and want to stop this. AUS seems to be the answer. Just cleaned me out now using 12 LG pads a day and a clamp this is not living.
What can I expect after surgery the AUS installed. Still this leakage, is there a incision that can get infected by can you walk around after surgery. Does the unit feel different in your body
Dr do not tell you as they have not had it done. Sounds like you are happy you had AUS installed and with what I am going through now I Do not see any choice. This was all caused by a Dr installing a URO LIFT which did not work right he left town another Dr. did a TURP to remove the URO LIFT he left me with leakage. Itis very hard to live with this now. any info about what I am in for during and after the operation would be great Thank you

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Hey pmccharles I had the AUS surgery 4 years ago today. Yes you will leak until the AUS is activated in 6 weeks. My incision in scrotum to rectum did get infected from wet pads. So maybe try switching pads out more.? Bruising will be ugly, I was black and blue above penis where incision was for the fluid balloon by bladder and penis and scrotum was bruised. But it will go away and I used Advil/Tylenol for the pain. And be careful sitting, the cuff in the perineum doesn’t have much skin for protection. Same has pump in scrotum, be carful sitting down. I use 1 thin pad in morning for my walk and 1 thick pad for the rest of day.. no pad at night, I get up 1 time at night to empty bladder . Just grab the 2 tubes and squeeze the pump 1-2 times and bladder empty’s. I was 59 when I got my AUS and a friend was 75 when he got his AUS. Another friend went to Mayo to get his because he had radiation years ago. We’re all happy with it.

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@smc24

I have an AUS, which works great. No, I cannot stop urine flow until the device releases all the pressure, usually about 30-45 seconds.
I have no physical restraints, but I'm careful to use a wide bicycle seat now and probably will stay away from a horse saddle. I don't ride horses, anyway.
I use the device easily without hardly thinking about it anymore. Two hands works best for me, one to squeeze the bulb and the other to keep the device from squirming around the the scrotum. Don't worry, it's easy, fast, painless and dependable.
I'm 73, got it about 3 years, ago. I'm very active with sports, life, etc. I wear a Depends, just to catch any little dribble and use one or two per day. Most of my non-AUS friends at my age say the dribble a little anyway under physical stress.

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Good Day.
I am looking at the operation on april 14th 2 weeks from now. have been using 5 small pads a day for 3 years now and want to stop this. AUS seems to be the answer. Just cleaned me out now using 12 LG pads a day and a clamp this is not living.
What can I expect after surgery the AUS installed. Still this leakage, is there a incision that can get infected by can you walk around after surgery. Does the unit feel different in your body
Dr do not tell you as they have not had it done. Sounds like you are happy you had AUS installed and with what I am going through now I Do not see any choice. This was all caused by a Dr installing a URO LIFT which did not work right he left town another Dr. did a TURP to remove the URO LIFT he left me with leakage. Itis very hard to live with this now. any info about what I am in for during and after the operation would be great Thank you

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I've had my AUS a few years now. My comments are similar to rudnick777's. I can use a urinal by just unzipping and pulling the front of my pants down a couple of inches farther than normal and it works fine. I'm more comfortable sitting down where I can operate with just one hand and take my time with no stray sprays. It become surprisingly easy and efficient.

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@bwjb

Hi Rudnick, I get my AUS activated next week. I'm still anxious about it since the entire control does not seem to be down in my scrotum, and I understand that to use the device one needs to hold the device steady by the two tubes at the top with one hand while pumping the lower button with the other hand. I don't really get the feel of the top two tubes. I am wondering whether the doctor that activates it and shows me how to use it will pull the device down further in my scrotum.

When you say that you relieve yourself in normal restrooms with no embarrassment do you mean that you are able to use a urinal in the men's room? I would have thought that would require pulling down your pants and underwear to work the controls.

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I was apprehensive as well prior to the activation but it turned out to be a non event. I feel the device in my scrotum and the tubes as well though they are at the top of my scrotum. At first I dropped my shorts to the ground prior to urination as I was better able to press the unit as well as point for direction control. Later I was able to just unzip my fly, keep direction control with my left and then squeeze with my right hand. There is just mild discomfort in the squeezing but total relieving of urine with just one squeeze. I hope this answers your question.

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