AUS , journey, I guess

I got my original AUS, 12/2009 and it was 100% (pad free) for a while. By 6 months a light shield was needed. This progressed until 2 years I was a little more than one pad per day. I opted for revision (2013) to place a smaller cuff. Knowing what I know now, I didn’t need a revision then. I had an unrealistic expectation of being permanently “fixed”. The initial 100% was not going to be the norm.
My case may have started out a little different from most I have read about. I am 100% incontinent meaning that without the AUS the number of pads per day is irrelevant, it all leaks out to the point of not needing to pee during the day, just like having a Foley catheter all the time. My smaller cuff revision of 2013 did not last 6 months before a full pad was again needed. During the next 5 years leaking got progressively worse until it was just marginally better,if at all, to use the AUS as compared to it being deactivated. In 2017 I began wondering how much was this thing helping and should I bother to go for another revision or just give up on the AUS.
Finally, Jan 2018 I saw my AUS doctor (T. Boone) and he offered a revision replacing all the components and moving the cuff to a new site along the urethra. This revision was done Dec. 2018. By Dr. J Stewart Methodist Houston.
It can be said that everyone with an AUS, has, or will, experience urethral atrophy, which can (will) steadily degrade the performance due to the thinning of the urethral tissue from constant pressure applied by the cuff around the urethra. There is a school of thought that the atrophy will progress regardless whether the cuff is activated or not. Apparently, this is just the nature of the thing. Looking back I could have got considerably more time out of the original implantation but I had an unrealistic expectation of staying pad less.
Based on my own experience I would recommend the AUS, especially if you are 100% incontinent or near to it. The big downside that the performance does not last forever. My experience was that I decided for the first revision too soon and waited too long for the second. Before my second revision I was more than a little bit doubtful and I was feeling what is the point. So far, the current revision (#3) is “holding its own” at six months out. I am happy now but long remains to be seen.
If you are considering an AUS I would encourage you to proceed but don’t think you will be “fixed”, this device is far from ideal but there are no alternatives that I know of that I would consider right now.

Blackjack said...
knotreel, your story should be a must-read for everyone newly diagnosed with favorable-risk disease...the message is: make darned sure you really need treatment before pulling the irreversible treatment decision.

You never imagined when you went into surgery that your journey would take you down this path...right? There was absolutely nothing about your case that led you or your surgeon to think you'd have all these problems...right? Just dumb luck...just your bad, dumb luck. So think, then, about the poor guys who think so trivially or naively about going forward with aggressive PC treatment for favorable risk cases and then end up with the same bad, dumb luck that you had, when the probably didn't really need immediate treatment at all. It's really, really sad, IMHO, and it's on us--the veterans who have been down-the-road--to reach back and help those guys make a completely enlightened decision...and your story can help. Thanks for sharing.


Not nit-picking your facts and not that it makes a big difference at all in your story, but wasn't your original RP surgery in 12/2009, and your original AUS in 01/2011?

this is must reading for anyone considering surgery. period. the outcome would have been the same despite the gleason score.

Rob is right. I find that some (just a few) members often forget that this is a support forum. Not a place to tell someone they made a bad decision, directly or in a veiled way. Think about that before you post.
BTW, looking back at knotreels old posts I found his signature, that noted biopsy G7(4+3), confirmed on surgical pathology. Not sure how that qualifies as “favorable risk disease” no matter how small the volume.

Knotreel, sorry you are having these issues. And grateful that you took the trouble to post your story for the benefit of others.

What was all that about? I didn't think what I said was controversial, maybe I have been away from the forum too long? The point of my post was not to complain or draw sympathy. I think someone thinking of an AUS should not get their expectations up too much, In my case no one explained what I should expect long term. You can read plenty of % satisfaction ratings, and so on, but nobody explained the inexorable deterioration of the AUS due to atrophy. Just like I never thought I would end up on the wrong end of the spectrum of continence, I didn't think the miraculous "fix" provided by the AUS would be relatively short lived. It will work number of years but only maybe one year at the "pad free" level.
There have been many that came before me who helped me by sharing what they learned, I was not reporting my situation or problem, just passing on what I have learned so far.

Knotreel this had nothing to do with you. Your post was not only fine, but constructive, helpful to anyone considering AUS. The problem was created by a member who repeatedly seems to enjoy controversy. I’ve deleted his offending post as well as the quote of his post by another poster as his derogatory comments towards another member are a violation of rule #3 “No posts that attack, insult, flame, defame, or abuse others”

Unfortunately, I am needing to lock this thread before it gets out of hand.
Knotreel please stick around, your posts are helpful to others.