Can someone help me about life after AUS 800 implant?

Posted by rodneyverrill @rodneyverrill, May 8 4:42pm

This is my first question/post so please excuse me as I a new at this. I am 58 and have had an RP in October of 2023. My prostate was 155 grams and since the procedure I have been left essentially incontinent using 7-9 large pads a day. Although this has been difficult, I feel fortunate my psa has fallen to .008, a number my doctor tells me is considered undetected.
I have tried PT with very little results, my surgeon recommended an AUS, so this coming Monday I will have surgery to have this installed. I have read many of the posts within the prostate cancer section, but I am still curious about discomfort after the 5-6 week healing process and "regular activity like swimming, golf, and more strenuous activities like mowing and lifting firewood. I am of course second guessing my decision but would be appreciative of any feedback any of you have.

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

Welcome, @rodneyverrill. I'm tagging members like @firespooks @jonbuuck @scullrower @budisnothome and @kpgnsm have experience with an artificial urinary sphincter (AUS) and have shared in these related discussions:
- Any experiences with Artificial Urinary Sphincter (AUS) or Sling?
https://connect.mayoclinic.org/discussion/longer-term-sling-or-aus/

See all: https://connect.mayoclinic.org/group/prostate-cancer/?search=AUS&index=discussions

Your wise to be asking questions now as you prepare for surgery in a few days about what to expect for life after the procedure. You sound like you're an active guy who wants to stay on the move.

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Your journey and age sound similar to mine. Like you, I did PT to work to gain my continence back, but it just wasn’t successful. Ten months after my RP, I had surgery for the AUS, so I could proceed with radiation. I will say the end result is life giving. I learned to be patient following the surgery, both with the recovery and once the AUS is activated, with learning how to live with it. There is a learning curve, but I have regained my normal activities, with the exception of using a normal bike seat.

I’m happy to discuss this with you over the phone. Send me a message with your email, and we can make plans to connect before your surgery or after your surgery. I definitely recommend proceeding with the surgery.
@jonbuuck

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Thank you so much for your feedback. I truly appreciate your thoughts.

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Take it slow and be careful sitting. I had my incision open up both times. You may be able to feel the cuff and sitting becomes hard if you sit on a hard surface. I agree it is life changing and so nice without a catheter. We can email or talk also. Learning how to use it takes a while but easy to do.

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@budisnothome

Take it slow and be careful sitting. I had my incision open up both times. You may be able to feel the cuff and sitting becomes hard if you sit on a hard surface. I agree it is life changing and so nice without a catheter. We can email or talk also. Learning how to use it takes a while but easy to do.

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Thank you! If possible, I may want to connect.

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@rodneyverrill

Thank you! If possible, I may want to connect.

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All will be ok. I took my body about 1 month for everything new inside to find it's new home. Things will move and that is ok. The unit should be activated around 4 weeks. You will still leak until it is turned on. Then you will need to play with the pump to get the feel of it. Mine let's me pee as soon as I squeeze the pump even a little. Not very often do I need to squeeze a 2nd or 3rd time. When done wait a minute or so for the dribbles to stop. Radiation killed my bladder. Very small in size and volume so I can go often. It will be a learing curve but for me and 3 years with a catheter it is SO nice. Good luck and really listen to doc and almost do nothing for couple of weeks. Incision can tear open . I did to much bending and woops. But it did heal in a couple of weeks. Life will be better.

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@budisnothome

All will be ok. I took my body about 1 month for everything new inside to find it's new home. Things will move and that is ok. The unit should be activated around 4 weeks. You will still leak until it is turned on. Then you will need to play with the pump to get the feel of it. Mine let's me pee as soon as I squeeze the pump even a little. Not very often do I need to squeeze a 2nd or 3rd time. When done wait a minute or so for the dribbles to stop. Radiation killed my bladder. Very small in size and volume so I can go often. It will be a learing curve but for me and 3 years with a catheter it is SO nice. Good luck and really listen to doc and almost do nothing for couple of weeks. Incision can tear open . I did to much bending and woops. But it did heal in a couple of weeks. Life will be better.

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maybe a stupid question but could you leave it open if you wanted to? Is it like an on/off switch or do you hold it open?

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No. It is always closed and you squeeze the pump to open it for a few seconds and it automatically closes. My doc had to activate it for me at 8 weeks. It is normally closed.

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All above comments are excellent and most valuable.
I guess I'm blessed by being the poster child (at 77 YO) for AMS 800 success. I waited about 15 months post RP for the install. The operation itself took a long time; some 4 hours. But it was all well worth it.
I had it activated by a quick office visit and those 15 months of 6 to 8 or 9 big pads a day were over.
At first I was very cautious still using the big pad for a couple days but only needed one because I didn't leak and it just got funky down there. Then down to a medium pad per day. So within a week or so and ever since I just use a thin pad. It's mostly for that 'last drop' that most "normal" guys have or the rare leakage. Now I'm at 9-months post install of the AMS 800 and all is well.
The only current downside is that I still need to drop my pants to get both hands working. One to activate (usually a couple or 3 or 4 squeezes) and the other to aim. No big deal. I use the accessible stall in public restrooms for convenience and space. The regular stalls are ok as well.
Depending on my fluid intake I usually go about 2-hours between voiding. If I sweat a lot or don't drink much or am driving I can go up to 4-ish hours non-stop.
When I get a signal/urge I know I have about 15-minutes to 1/2 hour to get to a bathroom.
YES, I had to learn how to use it. How hard to squeeze (a little hard, not painful at all), how long it takes to close again (not long), which hand to use on what LOL.
Yes, I'm super lucky and I think blessed to have an excellent doc and his team. BTW, it turned out my doc is a regional expert in gender affirming surgery. So he really knows the area he's working in. That had to be a plus for me.
NO problems with the incision, no discomfort post op, I don't bike but never felt pain sitting down or lifting (I was very careful at first).
I am blessed and know to be super grateful for it.
And, YES, life is so much better again.
Go for it and find the most talented doc you can. (More BTW, he was suggested by my RP surgeon.)

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@colleenyoung

Welcome, @rodneyverrill. I'm tagging members like @firespooks @jonbuuck @scullrower @budisnothome and @kpgnsm have experience with an artificial urinary sphincter (AUS) and have shared in these related discussions:
- Any experiences with Artificial Urinary Sphincter (AUS) or Sling?
https://connect.mayoclinic.org/discussion/longer-term-sling-or-aus/

See all: https://connect.mayoclinic.org/group/prostate-cancer/?search=AUS&index=discussions

Your wise to be asking questions now as you prepare for surgery in a few days about what to expect for life after the procedure. You sound like you're an active guy who wants to stay on the move.

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I’ve had my AUS for more than 5 years. It’s not perfect, but it’s helping me live a more normal life and save on incontinence pads. I had trouble with urge incontinence for a time. The bladder would push so hard that I leaked. A Botox treatment helped with that. Best wishes. Just make sure your surgeon has done lots of AUS insertions.

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