Do I want an Artificial Urinary Sphincter?

I am coming up on seven months post robotic RP. My incontinance remains at the level it was about 2 weeks post op. That being 90-95% dry at night and close to that sitting. Walking around still about 0%, it all leaks out. During my two post op follow-ups, my doc mentioned the AUS. I am beginning to consider this.  I have tried Imipram and done 6 weeks, so far, of PT with stim and biofeed back. Nothing has helped.

I have been reading posts on this proceedure but I still have some questions. I would like to hold out hope, at least, that sometime, maybe a few years later, I might be able regain enought natural control and no longer need the device. Does that ever happen? Is this one of those things that, once done, there is no going back?   Does having this device weaken the natural sphincter so that it will never function again? Can it be deactivated an left in place for a long period of time if my natural sphincter somehow makes a come back or would it need to be removed .  How about bicycle riding ( mine has the tiny skinny seat) , will having the pump in the scrotum be a problem? How about having one testicle removed?

It looks like the odds of this working and being able to stay in place are about the same as my odds were to regain continance after the RP. That part hasn't worked so well and I don't feel that lucky, I may have used all that up already. I hate the idea of this but I think I hate the incontinance more. At my 9 mo. visit I am guessing a cisto and uro dynamics test will be scheduled to see what is going on. BY then I think that if i don't see some sort of light at the tunnels end, the AUS might start looking good to me.

Tallguy, thanks for your comments. Yes, i read your journey as well as other posts you and others have made. Male_sling_ problems post's sorta cap it off, that is enough to give anybody some pause. Looks like that proceedure is unpredicable and like I said, I don't feel so lucky. Great though if it works. Anyway, I guess I am still in some sort of denial of accepting my that my incontinuance may be permanent. I will be looking forward to your reports of how this, your new and hopefully final journey, is going.
What occurs to me is, comfort, assuming this will be a permanent part of us and sometimes just two testicles seem to take up all the available space, I wonder if having one removed will provide a little more comfort. Just as well make some room for it now since it will always be there?
All this makes me wonder about my wife's cousin who had the proton therapy, he actually enjoyed it, that's right, fun! It's a little late to second guess, but it makes me wonder, what if....

ps, good luck and I hope your AUS makes you 100% , that will be nice!!

Post Edited (knotreel) : 6/30/2010 6:16:10 PM (GMT-6)

Notreel,

I was in the same state of mind when I was 7 months post op, but I kept on going until 18 months post op.  I have now had the AMS 800 (I think that's the right number) 23 months.  It really did give my "life" back to me.  I'll try to answer some questions you listed:

I don't know if anyone who has the aus ever regains continence.  I've not heard it happening, but then again, after the implant, I cannot bring myself to turn the thing off and start all over.

My docs gave absolutely no hope of ever regaining control.

Yes, it can be de-activated and left in place.

Your bike riding? I think you can with a wider seat.  Without that wider seat, I think you might as well forget it, due to the placement of the device. 

The pump in the scrotum has not bothered me... and I actually have two pumps:  The AUS and the IPP (never regained the ability to have an erection, either.  I'm now back to normal and functional in both departments.  I still have two testicles in there, too.

 

I hope this helps.  In July, I will have my devices two years.  They are not perfect, but, again, allow me to function normally.

Gene214

 

Gene, I am probably a canidate for the IPP as well but, I haven't been thru any post op therapy for ED other than 50mg viagra every other day. I was hoping to get a grip on the incontinence then work on the ED. BUT I thought the first part would be progressing "normally" and in a few months I could expand my efforts to the ED, so the whole schedule has sliped back. As for the ED, although I haven't achieved an errection suitable for penetration, but things looks like they might work for me with injections.
Looking back, and I am only just getting started, I was thinking this would be something like a normal surgery, the operation- the recovery, but as Tallguy says, it is a journey. Someone could have told me that before and I would have said sure, I understand, ect....
Gene, thanks for your answers. I much rather hear this from a fellow traveler than the doc. I mean I just laugh, looking back at how the doc was trying to tell me how a biopsy feels. Only we know that!
Anyway, I am really going to keep up the full court press on the dribbling but I may not give myself as much time as I first thought. I am seeing the AUS as something that i might really want. A crude way of putting it, put your hope in one hand and your pad in the other and see which one has something in it? I better stop before I get kicked out!!
Thank you Gene and Tallguy, I am hope to hear you say it changed your life too.
Ron

ps, if I get two pumps, one of the boys will have to go.

For me, the injections worked, but (I don't care what "they" say), they hurt, the medication hurt, and they hurt my mind (sat there, trying to get the nerve to stick that needle in my..., etc.) I tried them about ten times.  Viagra worked a teeny, tiny bit, but not to the point of penetration... far from it.  The surgeon said (you'd expect it from him), "In my experience, you can forget it without the implant..." & that was said at about 16 months post prostate surgery.  I hope you do much better than I.  You have to be satisfied as to the "when" and the "what" (AUS and/or IPP).

Regarding bike riding, the reason I suggested a larger seat: My experience is that when I straddle something (like a bike seat, etc.) I break the AUS device's seal and out comes urine uninvited.  I don't like when that happens.  The device is a cuff around the urethra, which squeezes it together to preven the urine from passing.  Although it's not the same as unloading the entire bladder, mine is probably a shot glass of urine, which is enough to wet my pants (I don't like that!)

Tallguy, I did have both devices implanted at the same time.  KW & I had the same surgeon, and he seems to be one of the best.  Looking back, I would have it no other way.  In 5-6 weeks I was good to go with both devices... and also to get on with my life.   I'm sure there is some reason your surgeon will not do both at once, Tallguy, but it would be worth a discussion with him as to why. 

Except for your frustration, there's no reason to rush.  Really, 7 months is not long at all.  It seems most guys whose remaining sphincter starts working again is at about 6 months. 

I would be willing to speak with you on the phone if you can get your number to me.  I'm not willing to put my number onl the forum.

Gene214