Can someone help me about life after AUS 800 implant?

Posted by rodneyverrill @rodneyverrill, May 8, 2024

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.

Profile picture for peterj116 @peterj116

@mirsy Yes. End of answer.

Longer version.... it can take up to 2 weeks for the incisions & swelling to calm down.
If you're helping him shower, I found that drying the area with a hair drier on not-too-hot works better than trying to gently use a towel.

Other than that... it just takes lots of rest, gentle movement & time.
You're nearly at the finish line. Doing well.

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@peterj116 Would icing beyond first 48 hours help accelerate the healing process?

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Profile picture for mirsy @mirsy

@peterj116 Would icing beyond first 48 hours help accelerate the healing process?

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@mirsy Can't say I tried that.
https://keystoneurology.com/services/procedures/artificial-urinary-sphincter/artificial-urinary-sphincter-post-operative-instructions/ says "Apply ice packs (can be a zip-loc bag with ice or frozen peas / vegetables) to your scrotal area for 48 hours intermittently while you are awake."

These symptoms are normal for 4-5 days after
your procedure:
• Swelling of the scrotum; try ice packs and tight-fitting underwear to minimize the
swelling
• Bruising of the scrotum or lower belly
• Mild discomfort with urination

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Hi everyone, you can call me Ben. I am just 30 but have had cancer twice and wound up in this situation with reduced urinary control. The first time was a sarcoma in the prostate, and I had radiation for it, damaging my urinary sphincter and harming my ability to retain urine. However, it also caused a partial stricture that retained urine. So urination always required pushing, but I didn't have much leakage despite the weak sphincter. Since it had been this way ever since I was 8 years old or so, it seemed very natural to me.

Well the second cancer was a metastatic melanoma, and while undergoing a (successful) surgery to remove a metastasis, I had a traumatic catheterization that tore the urethra. After a urethroplasty, the stricture that retained urine is gone and I am left with just the weakened sphincter. I have been at 1-2 pads but gradually increasing to 2-3 pads over time. PT didn't help. So now I am several years cancer free, but have this urination issue every day.

With all due respect to everyone who has gone through this, most men face this problem in an older age after already getting a chance to enjoy their youth. This is very hard to deal with at my age. I have to go to the office each day, and although my wife is understanding, our intimacy has decreased by about 90%, understandably.

I have been considering the AUS, but it is hard to accept needing such a big intervention, and because my time horizon is hopefully 40-50 years more of life, and I already have radiation damage and a traumatic catheterization and surgery, I worry that my risk of serious side effects is many times higher than the typical recipient.

I'm curious if anyone has any thoughts they can share, and especially how the AUS has worked with intimacy. I'd also be interested to hear if anyone had complications.

Thank you very much,
Ben

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Ben, you seem to have a very difficult case going. And to hope to get your age appropriate functions back may require some really specialized care.
May I suggest you find a really, really good Genito-urinary surgeon. Maybe like mine who implanted my AUS.
One avenue may be to find one who specializes in either trauma reconstruction and/or gender affirming surgery. Again, like mine.
You may have a chance if you live in or can get to a major metropolitian/big city area with major universities nearby.
All the best wishes on getting back to the quality of life you deserve.

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Profile picture for beredwards @beredwards

Hi everyone, you can call me Ben. I am just 30 but have had cancer twice and wound up in this situation with reduced urinary control. The first time was a sarcoma in the prostate, and I had radiation for it, damaging my urinary sphincter and harming my ability to retain urine. However, it also caused a partial stricture that retained urine. So urination always required pushing, but I didn't have much leakage despite the weak sphincter. Since it had been this way ever since I was 8 years old or so, it seemed very natural to me.

Well the second cancer was a metastatic melanoma, and while undergoing a (successful) surgery to remove a metastasis, I had a traumatic catheterization that tore the urethra. After a urethroplasty, the stricture that retained urine is gone and I am left with just the weakened sphincter. I have been at 1-2 pads but gradually increasing to 2-3 pads over time. PT didn't help. So now I am several years cancer free, but have this urination issue every day.

With all due respect to everyone who has gone through this, most men face this problem in an older age after already getting a chance to enjoy their youth. This is very hard to deal with at my age. I have to go to the office each day, and although my wife is understanding, our intimacy has decreased by about 90%, understandably.

I have been considering the AUS, but it is hard to accept needing such a big intervention, and because my time horizon is hopefully 40-50 years more of life, and I already have radiation damage and a traumatic catheterization and surgery, I worry that my risk of serious side effects is many times higher than the typical recipient.

I'm curious if anyone has any thoughts they can share, and especially how the AUS has worked with intimacy. I'd also be interested to hear if anyone had complications.

Thank you very much,
Ben

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@beredwards I got an AUS implant over a year ago. It has been a quality of life changers. I used to use 5 or 6 large pads a day and have to bring a large suitcase along on vacation just for the pads. The kind folks from TSA would enjoy harassing and humiliating me, assuming the pad I was wearing had to be an explosive device. I then got explain about cancer and incontinence in front of a lot of strangers. As far as sex went, the leakage was a MAJOR problem. After getting an AUS implant, I only have to wear one small pad per day, none at night and have absolutely no leakage during sex. My surgeon did not make the cuff as tight as she could have, because I had radiation and she did not want to risk erosion.

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Profile picture for beredwards @beredwards

Hi everyone, you can call me Ben. I am just 30 but have had cancer twice and wound up in this situation with reduced urinary control. The first time was a sarcoma in the prostate, and I had radiation for it, damaging my urinary sphincter and harming my ability to retain urine. However, it also caused a partial stricture that retained urine. So urination always required pushing, but I didn't have much leakage despite the weak sphincter. Since it had been this way ever since I was 8 years old or so, it seemed very natural to me.

Well the second cancer was a metastatic melanoma, and while undergoing a (successful) surgery to remove a metastasis, I had a traumatic catheterization that tore the urethra. After a urethroplasty, the stricture that retained urine is gone and I am left with just the weakened sphincter. I have been at 1-2 pads but gradually increasing to 2-3 pads over time. PT didn't help. So now I am several years cancer free, but have this urination issue every day.

With all due respect to everyone who has gone through this, most men face this problem in an older age after already getting a chance to enjoy their youth. This is very hard to deal with at my age. I have to go to the office each day, and although my wife is understanding, our intimacy has decreased by about 90%, understandably.

I have been considering the AUS, but it is hard to accept needing such a big intervention, and because my time horizon is hopefully 40-50 years more of life, and I already have radiation damage and a traumatic catheterization and surgery, I worry that my risk of serious side effects is many times higher than the typical recipient.

I'm curious if anyone has any thoughts they can share, and especially how the AUS has worked with intimacy. I'd also be interested to hear if anyone had complications.

Thank you very much,
Ben

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@beredwards
You should consult a Urologist that specializes in treating incontinence. The ProACT device May make more sense for you since it doesn’t require squeezing a bulb to get your urine to flow. A doctor that specializes in doing both AUS and ProACT Would be the best person to help you decide which option is best for you.

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After the initial six week healing process, you can do anything you want. Your surgeon will let you know when you can do what.

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Profile picture for tuckerp @tuckerp

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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@tuckerp You activate it and it automatically closes about a minute later.

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Profile picture for jimgaudette @jimgaudette

@tuckerp You activate it and it automatically closes about a minute later.

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@jimgaudette but if you wanted to could you lock it open. There are times I may want to wear the condom bag. anyplace where I dont want to rush to the bathroom.

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Profile picture for tuckerp @tuckerp

@jimgaudette but if you wanted to could you lock it open. There are times I may want to wear the condom bag. anyplace where I dont want to rush to the bathroom.

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@tuckerp You can easily deactivate it and the reactivate it later, but I don’t know why you would want to do that

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