Some of the recent posts about
those of us getting new AUS implants or revisions to their existing AUS made me give my own AUS experience some honest (what’s that) thought. I am now trying to think of my experience in QOL rather than how much I leak with my AUS activated.
Some background, Robotic surgery Dec 2009 and had PT and various other things that ended up 10 months later being deemed a failure. I was, at that time, 100% incontinent, defined by me as whatever I drank came out, never needed to pee as none was collected in my bladder. At night one pad would do.
AUS recommended, sling not offered as an option. AUS was done Jan 2010, at activation I could not believe it, I was totally dry, no pads! At about
6 months spotting in underwear developed followed by spotting and later wet spots in outer wear. Ok, I have to wear a pad no big deal. Eventually the one pad should have been counted as 2 or more but I was in bit of denial. I hoped a smaller cuff would put me back to that miracle day of the activation. Dr. Boone did his urodynamics and said I was “50/50”. So optimistic me goes for the smaller cuff, which I think is a 3.5 which might be the smallest? Anyway, glory days again but maybe just a month before the same leaking process began again.
Four years after the revision I have given up pads and gone back to the external catheter and leg bag. I was rarely using over one pad per day but it in reality should have been maybe four. So the smell and leaking is on me for bad pad management. Now finally comes the point of all this. Since the AUS implant I haven’t really thought much about
quality of life, I just was thinking how many pads and am I too wet in the front and are my pant wet. I am at the next step in trying to go one way or the other with the AUS. One way is have it removed the other is tandem cuffs maybe.
The tandem cuffs were the thing years back but now I think they have fallen out of favor, at least according to my internet research. DR. Boone has not wanted to even discuss this in the past saying not to worry about
that now. Now I am beginning to wonder if I was too incontinent even for the AUS or maybe my urethra is thin and weak? The AUS has it’s limits as to how much pressure can be applied without other complications. I can see no different outcome with tandem cuffs in the long run, atrophy again probably.
As far as QOL what’s the difference between 4 pads with AUS and 10 without AUS? To me not much, plus there are unpleasant things with pads like the smell, it’s always there, then surprise, stuff has shifted in the underwear and pants are now wet. Oh, and I find it embarrassing to walk in public with the pad bulge in the front.
removing the AUS completely? Sounds crazy at first, 4 pads versus 10 is a big percentage reduction in pads isn’t much help in QOL for me. I could just leave the AUS in place and use the condom cath and bag as I am now doing. I worry constantly about
going to the emergency room or even a routine procedure that goes wrong and somebody tries to cath me. Before the AUS I rode bikes and enjoyed it and also enjoyed the idea that I could ride when I wanted. I am afraid to even try riding the bike with the AUS and AMS says don’t. There is always some risk of erosion even inactivated as mine has been for the last month or so. Besides, in the past I never went in public with the pads, I always used the cath and bag as there was never any confidence in not having wet pants, smell, as well as the bulge.
I am seriously thinking of having the AUS ( it’s ideas of dryness) removed and use the trusty condom cath and bag full time (this is not uncomfortable for me) plus have the option for placement of a urethral cath if needed. And I can ride again, or at least have the option. I guess, number one for me is being totally dry! and only the cath has done that over the long term and I really don’t like the big pads.
I must add that I am happy for the recent AUS club members who are enjoying their happy days of dryness and even if they become as wet as I have over the years (I hope not) they may not find themselves thinking this way. IMHO it really boils down to, in the long run, if can you wear a full pad, even if it’s just one, every day. If someone told me all this before I got my AUS I would no doubt ignored it as I prefer the optimistic view that hopefully any those who have read all have.
Tell me truth, does any of this sound sane? I know from experience that this disease can make me at least a little crazy.
06-08 1st biopsy neg, psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, tumor 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent @ 12 months
ED, pre-op severe, post op total
10/10 Dr Boone, Methodist recomended AUS
AUS/ IPP performed 1/11/11 Methodist Houston
AUS revision 8/13/13 Dr. Boone- smaller cuff
Post op psa 0.04, then <0.01&
Post Edited (knotreel) : 5/25/2017 1:08:00 PM (GMT-6)