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Posted 1/15/2020 2:52 PM (GMT 0)
Randy's surgery was on Monday. The cystoscopy showed the cuff had eroded his urethra (as suspected). The AUS was removed. They also had to make a 3 inch incision along the scrotum to remove a pocket of pus that had formed along the tubing. The incision on his scrotum was left open to drain and has to be packed twice per day. They placed a larger supra-pubic catheter to prevent any remaining blood clots from blocking it. He also still has a foley catheter, which is capped off and is in place to act as a stint for the urethra to heal around. In 3-4 weeks dye will be injected to be sure there are no further leaks. At that point, we'll make plans to remove both catheters.

As of right now, he's in a lot of pain and is not in the best of spirits. We're praying that we have rounded the corner and will be able to put this episode behind us very soon. Thanks for all the good wishes. Donna.
Posted 1/15/2020 3:53 PM (GMT 0)
That is an ordeal - sorry to hear he's having to go through all that.

Hope he can start recovering soon.

Andrew
Posted 1/15/2020 5:26 PM (GMT 0)
Donna, I'm so sorry that Randy had to go thru all this... but let's all pray that this is the end of his ordeal. Unfortunately it will likely be back to pads and briefs for some time afterwards. If I can help with any info, please just drop me a note under any AUS thread. I've been thru much of this myself, though fortunately with a much better ultimate outcome (but who knows what the future holds).

Best wishes for you both during his recovery...
Posted 1/15/2020 6:12 PM (GMT 0)
Thank you Rob. We're hoping this rounds the corner. We are now at a point where a few pads a day doesn't seem so bad.
Posted 1/16/2020 4:59 PM (GMT 0)
Thanks for updating us Donna. Hope Randy has a speedy recovery.
Posted 1/17/2020 3:36 AM (GMT 0)
Just saw this post. It was like deja vu. Same thing happened to me a couple of years ago. Had AUS and had issue urinating. Had excruciatingly terrible spasms for nearly two weeks and had to undergo emergency surgery. Turns out AUS malfunctioned and stayed closed. Caused a tear in urethra and urine leaked. AUS had to be removed. AUS was defective. Refused to have the surgery again and living with 100 percent incontinence. I thought my ordeal was bad until I read this. Hope Randy is doing better. Please keep us updated and hope you can find out what caused the problem, especially if the device was defective.
Jim
Posted 1/17/2020 9:22 PM (GMT 0)
We're hoping that the incontinence isn't any worse than before. The issue here (they think) was damage from SRT. The cuff remained open the entire time. They were sure that was the case, because they could easily pass a foley through the cuff. The Urethra simply eroded away under it. After this, they say Randy wouldn't be a candidate to try again. (As if he would).
Posted 1/17/2020 10:29 PM (GMT 0)

RandyJoe said...
We're hoping that the incontinence isn't any worse than before. The issue here (they think) was damage from SRT. The cuff remained open the entire time. They were sure that was the case, because they could easily pass a foley through the cuff. The Urethra simply eroded away under it. After this, they say Randy wouldn't be a candidate to try again. (As if he would).

I'm really sorry to hear about these problems Y'all are having. It just goes to prove that there are no surgical procedures, and few prescription meds, that don't have serious risk involved- potential bad outcomes/SEs. I lived with a deep down fear for my 36 years of administering many thousands of anesthetics. I never had a bad outcome beyond the occasional relatively minor SE which every one had ever so often. Problems that were just accepted for the benefit of the procedure.

But, I always knew what could and very rarely did happen no matter how skilled and careful the practitioner was. Then it always comes down to benefit(for those that don't have problems) vs risk. And to trying to figure out what procedures and their likely benefits are worth the risk, or sometimes not even the risk but the known likely trade offs/bad SEs.

I sure do wish I could have avoided my surgery, or any other major procedure, for my PC. But I did not see any way to avoid having something major done. And I have certainly thought more than a few times over the years that I would like an AUS and/or penile prosthesis. But, I have not so far been willing to subject myself to more procedures, not only to avoid the unpleasantness of the procedures themselves, but because of a possible ordeal like you guys( and other like Tdnjam) have been through. Or, worse. Some times knowing about such as this can make it a big step deciding to turn your body over to the medical folks. It is all risk vs benefit.

I hope that things improve for Y'all!
Posted 1/17/2020 11:53 PM (GMT 0)
That's rough! My best to both of you and hope for speedy recovery.
Posted 1/18/2020 12:01 AM (GMT 0)
RandyJoe it is hard for me to complain too much, but radiation was the big culprit for me. I was nearly dry when I had to have radiation following surgery. Then the flood gate opened (literally) and it has been a life of 100 percent incontinence since. But I have been in remission since radiation...so in that respect I am very grateful. My Uro said I could try AUS again, but after what I went through I said no way. Other than a penile clamp, I am not aware of anything to help me deal with incontinence. Hope the story is different for Randy.
Posted 1/18/2020 6:49 PM (GMT 0)
All us with an AUS have to take a deep breath after reading of your husband's ordeal. I complain about my AUS lost effectiveness (three revisions so far in 9 years) but that seems petty compared . But, I am worried about the next step for me, another revision? Revision apparently not an option for Randy, or at least one that he would consider? I have wondered if a subrapubic would be a long term option for me? Have you considered this? Like Jim I am 100% incontinent and even with my new AUS (3/19), pads are a must since about 3 months after the new unit. My last long stent between revisions was about 6 years and in that time the AUS ended up with almost no effectiveness. While pads and underwear allow me to leave the house, there a many down sides.
Posted 1/19/2020 3:20 AM (GMT 0)
Knotreel if it weren't for the penile clamp, I would go through 20 pads a day easily. Life outside the house would be difficult and very messy without the clamp...and there have been times when it has failed. Never would have believed this would be my life at 65 years of age. Sure hoped AUS would have been the answer but after your post I have to wonder.
Posted 1/19/2020 2:23 PM (GMT 0)
don't let me discourage you from trying the AUS. I seem not to be typical in the time it takes for atrophy to kick in. Still though, everybody experiences atrophy but not as bad. I think maybe it's because, like you, I am 100% incontinent. That way since surgery. And I am grateful that I haven't suffered any life threatening issues, at least not yet.
Posted 1/19/2020 2:59 PM (GMT 0)
I hope everything heals well and fast....
God Bless
Posted 1/19/2020 7:26 PM (GMT 0)

knotreel said...
don't let me discourage you from trying the AUS. I seem not to be typical in the time it takes for atrophy to kick in. Still though, everybody experiences atrophy but not as bad. I think maybe it's because, like you, I am 100% incontinent. That way since surgery. And I am grateful that I haven't suffered any life threatening issues, at least not yet.

Atrophy? Caused by AUS? Atrophy of what?
Posted 1/19/2020 8:22 PM (GMT 0)
Just like what your wedding band does to your finger, the constant pressure eventually indents your finger. The AUS cuff does the same thing to your urethra. As the atrophy progresses, the thinning your the urethra walls equate to less pressure applied to close the urethra. some people are apparently nor affected as much as others since not many people seem to complain about the AUS loosing effectiveness. I my case,starting off at 100% incontinent might be the difference? On the other hand I guess my expations were too high. The AUS was and is a help but nowhere near a "cure", at least for me.
Oh, and the AUS cuff is filled with water, therefor it is not flexible, no elasticity allow for changes.
Posted 1/19/2020 8:25 PM (GMT 0)
Randy joe, I didn't mean to hijack your post, I just wanted to hear about your thoughts on the supra pubic catheter as a long term solution for when I say no more AUS. sorry
Posted 1/21/2020 12:08 PM (GMT 0)
Hey, Knotreel, Don't worry about 'hijacking'. We're all here to hear from each other and the natural progression of any conversation is fine with me. The Suprapubic catheter isn't meant as a long term solution, just a temporary fix. My understanding is the SP catheter is only used long term for certain bladder ailments that cause constant urinary retention. I'm not a fan of anything that inserts directly into an organ. It makes infection much more likely.

Randy was almost completely dry after surgery and before starting radiation. The incontinence started about 18 months after the completion of radiation. The SRT is apparently the culprit for the incontinence. It's also the reason they think the urethra eroded so quickly. Radiated tissue doesn't get the blood flow of healthy tissue. Randy has no interest in trying again, and the surgeon said she absolutely would not recommend trying again. Best case scenario is that the incontinence isn't worse after all is said and done. Just FWIW, we were told about 10% of people who have this done after SRT will experience this complication. It's not really all that uncommon. We have learned a lesson though. Neither of us will ever have another surgery that isn't absolutely necessary.
Posted 1/21/2020 3:08 PM (GMT 0)
Believe it or not, all of this discussion is refreshing. The AUS was my whole reason for coming to HW in the first place. There is not enough discussion on this topic anywhere online.

March 2017 I was six months post-RP and knew I would require ART, but was totally incontinent... even after months of PT with a Kegel coach. No one in the other forum I had joined just after my Dx knew anything about AUS's. I was under pressure to get RT underway due to adverse pathology, but knew that the AUS would change my life forever. Once it goes in, there's no hope of returning to natural continence, ever. Pratoman pointed me to HW.

My temporary urologist at the time said it was better to have the implant surgery before radiation rather than after. Still, the surgery was a near disaster, but I was focused on getting the ART underway and wasn't overly focused on what life would be like once all of that was completed.

The AUS did it's job, but that plus HT and RT have all had a profound impact upon my QOL. So I don't always tell the story, as I wouldn't want to scare away anyone who needs it from having it done. I did tons of research before having this done. But even when you do everything right, stuff still goes wrong. And it haunts me daily.

I just had PSA & T blood draw yesterday. I wish I could talk with my uro about the issues that have arisen since he first promised me how well it was going to go. Yet this is the guy who blew the surgery and it seems I cannot speak with him without becoming emotional. His latest advice was that I stop reading online about prostate cancer. And so that's where I am now.

BTW that other forum recently closed down, and I have suddenly found myself in charge of a non-profit... not unlike how I accidentally became a scout leader long ago. Not something I ever dreamed would ever happen. But such is life.
Posted 1/21/2020 3:48 PM (GMT 0)
Thanks for that post, RobLee!
Posted 1/22/2020 9:49 PM (GMT 0)
"Once it goes in, there's no hope of returning to natural continence, ever."

RobLee,

We specifically asked the surgeon if Randy's incontinence would be any worse when the AUS came out than it was before the surgery. She said it was possible that it wouldn't be any worse, but it might be. We're just hoping that when all is said and done, the incontinence won't be worse than it was before.
Posted 1/24/2020 9:06 PM (GMT 0)
Thanks , Randy Joe. Hope things keep going the right direction you and yours. I am going to look into the SP later on for incontinence. I have read that the SP is used for incontinence, just haven't hear of anybody who has actually done it. Even though i do have an AUS that is working fairly well right now, since my original AUS I have spent more time using a condom catheter than not. I would just use that instead of an AUS but two days all I can wear one before things get irritated.
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