AUS Experiences?: Hey folks- So, it's... - Advanced Prostate...

Advanced Prostate Cancer

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AUS Experiences?

DS_WAVL profile image
6 Replies

Hey folks-

So, it's been a little over two years after my RARP, and I'm still quite a bit leaky. On very physically active days, I can still soak a good 3-4 heavy pads. Even standing and working in the kitchen gets me running.

Sick of being soggy, perpetually itchy and raw down there, and as much as I hate the idea of messing with my remaining plumbing yet again, I think it's time for me to look at some options.

My PC was well-contained, and since my RARP, I have not needed any radiation, chemo, etc. The main thing I worry about, however, is that at 57, I am well below the average age for the AUS implantation. I hate the idea of such a foreign body in me, especially given a failure (urethral erosion requiring explantation) rate of almost 6% in the first year or two based on some studies I have read.

I am looking for your experiences- Have you had an AUS? How old when you got it, have you ever had one fail, what was the procedure, recovery, and efficacy like?

I will be meeting with my Uro in May for a PSA followup, but would like to arrive ready to discuss this issue.

BTW, I have 100% ED, as well. So far, pills don't work at all, and my one attempt at trying Trimix was so painful, it would have been worthless anyway. I'll worry about that after I get dry.

Thanks, all!

-Daniel

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DS_WAVL
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6 Replies
YostConner profile image
YostConner

I had AUS installed 14 months ago at age 53, 10 years into my PCA journey. My only regret is that I waited. Surgery was straightforward. Pain afterward was worse than I expected for about two weeks. At four weeks, I learned to use it. No problems so far. My surgeon was Dr. Arthur Burnett at Johns Hopkins. He gets extra points for a good sense of humor.

DS_WAVL profile image
DS_WAVL in reply toYostConner

Thank you for your reply. How did you choose that particular surgeon? Did you have to make a special trip to see him?

YostConner profile image
YostConner in reply toDS_WAVL

I asked my urologist for recommendations. She gave me two. I preferred to stay within the Hopkins system anyway, since that's where I'm treated for PCa, so Dr. Burnett was the natural choice. I had one get-to-know you meeting with him, then a testing visit that confirmed my candidacy, then didn't see him again until the day before surgery.

j-o-h-n profile image
j-o-h-n

Re-post from yesterday (Wednesday) 04/25/2018. <====<<<

I had a RP and they removed the foley in a week (nurse said that's the only appointment that men never cancel). I was incontinent for about 3 months and slowly went dry. Kiegel exercises before the RP helped. So give it time.

Now fast forward (years later) and had an incompetent urologist place a stent in my urinary tract "so far up" that I had to go to the hospital so she could "dig it out". Well she fxxk up my sphincter and now I am totally incontinent. Leak all the time. I buy my depends by the case.

I am very familiar with "the wet balls syndrome". Been there, is there and have the tee shirt to prove it".

Getting up from a sitting down or lying down causes spillage I'm afraid.

Try changing in an airplane lavatory, no fun, I'm 6'1" and 230 Lbs.

My comments about artificial urinary sphincters is that someone on this forum said his eventually failed and he did not want to go through that operation again. Another post here said his squeaked. My cousin who is a Operating room technician said he's seen where it had to be removed and that the patients flesh had grown around it, making it difficult to remove.

Make sure you have a mat between you and your mattress when you go to bed. Try to keep from drinking liquids before you go to bed.

Yep bending down can be bitch.

But you must stay hydrated.

One more thing "why do we say we gotta take a piss when in reality you really want to leave it?"

From today (Thursday) 04/26/2018) <====<<<

To alleviate the rawness down below try coating the area with over the counter A & D lotion. Used for babies with diaper rash.

Good Luck and Good Health.

j-o-h-n Thursday 04/26/2018 6:08 PM EDT

in reply toj-o-h-n

With nasty problems like that I wonder how you keep your sense of humor. Maybe you should reconsider the artificial sphincter?

j-o-h-n profile image
j-o-h-n

That's the only sense I have. I've considered it but then unconsidered it. Thanks for your concern.

Good Luck and Good Health.

j-o-h-n Friday 04/27/2018 4:18 PM EDT

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