Do I want an Artificial Urinary Sphincter?

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knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 6/28/2010 5:20 PM (GMT -6)   
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
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 6/30/2010 2:31 PM (GMT -6)   
Knotrell,
I am scheduled for an AUS/AMS 800 on July 8th. I am coming up on two years since RP. I started out about the same as you with incontinence and not much has changed. I posted a thread of my experience having a sling implanted in Feb. 2010...tallmans journey to coloplast sling...on this site and you can read my experience in detail. Basically the sling ended up being no help. On the contrary, the same sling with the same doctor that did mine worked for another guy....rapids...who has also posted on this site and on the thread mentioned above worked and his condition was similar to mine...go figure.
I did have the cisto and urodynamics and everything looked like I was a reasonable candidate for a sling. However, when consulting with the Dr. that did the sling and explaining my incontinence level (just like you described) he said that if it was him he would probably do the AUS instead of a sling. I decided on the sling first since I still would have the option of the AUS if the sling failed and I like you did not at all like the idea of the AUS. Now I can wait for my AUS to be implanted and activated.
I don't think we can expect for any natural control to return after having the AUS implanted. Not sure if it is impossible but it does not seem to happen. the guys that have the AUS seem extremely well satisfied and you have probably read some of those posts. The result is much better than the "thought of it".
At about 7 months is when my Dr. said that I had probably plateaued and that a sling or AUS was most likely in my future. I started researching just like you. Get your tests, do your research, take your time and you will make the decision that is right for you.
64  year old male in excellent physical condition.
PSA jumped  3 to 8 in one year
pt2b NO Mx with a Gleason score 3+3=6.
DaVinci RP,  7/23/08. Tumor type: Acinar
size 5.5 cm x 5.7 cm weight: 77 gm.
Incontinence & ED. Dry nights , no control during day.
FUDS and cystourethroscopy testing 10/09.
24 hr pad wt. 219gm. AUA sympton index 13/35=moderate
Virtue sling surgery 2/3/10 NYU med center
Appeared to help but gradually returned to pre surgery condition.
Back to 3-4 pads/day, stopped drugs, plan for AUS July 2010.
Latest PSA 4/1/10 negative.
 


knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 6/30/2010 7:08 PM (GMT -6)   
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)


tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 6/30/2010 7:23 PM (GMT -6)   
Thanks for the good wishes!
It pays to keep all of this in perspective. Others have speculated that the vast majority do improve and also most that have slings also have good experiences....those do not tend to show up on sites like this. That said, if you are one of the 5 or 10% that do not it doesn't matter.
Your wifes cousin must have been smokin something funny or enjoys strange things. Good to hear that someone feels that way.
I had not thought about the testicle idea. They certainly serve no useful purpose any more. I will ask my Dr. about that one. On the other hand comfort does not seem to be an issue from what I have heard.
64  year old male in excellent physical condition.
PSA jumped  3 to 8 in one year
pt2b NO Mx with a Gleason score 3+3=6.
DaVinci RP,  7/23/08. Tumor type: Acinar
size 5.5 cm x 5.7 cm weight: 77 gm.
Incontinence & ED. Dry nights , no control during day.
FUDS and cystourethroscopy testing 10/09.
24 hr pad wt. 219gm. AUA sympton index 13/35=moderate
Virtue sling surgery 2/3/10 NYU med center
Appeared to help but gradually returned to pre surgery condition.
Back to 3-4 pads/day, stopped drugs, plan for AUS July 2010.
Latest PSA 4/1/10 negative.
 


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 6/30/2010 7:28 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
 
PC diagnosed 12-06 @ age 63
Radical open removal 2-14-07, Gleason 3+3=6
Post-Surgery psa  -- .011
Removal of stricture 6-07, incontinence continues
01-15-08 psa -- .05
AUS, IPP implanted 07-16-08
AUS, IPP activated on 08-18-08.  They both work!
10-20-08 went back to surgeon for a follow-up.  Both devices work well.
10-20-08 psa -- .05
05-15-09 psa -- .07
 


tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 6/30/2010 7:48 PM (GMT -6)   
Gene,
Did you have both the AUS and IPP implanted at the same time? My Dr. does not do them that way....recommends 3-4 months between procedures. I have heard of several others that had it done at the same time.
64  year old male in excellent physical condition.
PSA jumped  3 to 8 in one year
pt2b NO Mx with a Gleason score 3+3=6.
DaVinci RP,  7/23/08. Tumor type: Acinar
size 5.5 cm x 5.7 cm weight: 77 gm.
Incontinence & ED. Dry nights , no control during day.
FUDS and cystourethroscopy testing 10/09.
24 hr pad wt. 219gm. AUA sympton index 13/35=moderate
Virtue sling surgery 2/3/10 NYU med center
Appeared to help but gradually returned to pre surgery condition.
Back to 3-4 pads/day, stopped drugs, plan for AUS July 2010.
Latest PSA 4/1/10 negative.
 


knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 6/30/2010 9:59 PM (GMT -6)   
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.

kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 6/30/2010 10:05 PM (GMT -6)   
Knot,  I would highly recomend having the AUS given that your Doctor has done many of them.  The bicycle thing is something you will need to talk to your about.  Myself I still need a full Depend's Guard when I play golf.  But, the good thing is that one pad last all day.  Before my AUS i would need a new pad after 4 or 5 holes.
    There is plenty of room in the scrotum for one pump.  Heck,  Gene has both the AUS and the Penile Implant and he has done great.
 
     Good luck,
    KW
    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
     Dec. 2006 – Oct. 2008 Cystoscope, Two Collagen injections,Second Opinion   
    Consultation for Incontinance at OU Medical Center, Bio-Feedback       
    training, Chiropractic, Accupuncture , AdVance Male Sling, Two More Collagen 
    injections, AUS Installed and Activated (Dr. Morey at UT Southwestern Dallas TX)
    All to try to resolve incontinence (using 6-8 Depends Guards a day)

    To Date All PSA's 0.00.

   http://www.healingwell.com/community/default.aspx?f=35&m=721171

    http://www.healingwell.com/community/default.aspx?f=35&m=978691


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 7/1/2010 10:47 AM (GMT -6)   
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  
PC diagnosed 12-06 @ age 63
Radical open removal 2-14-07, Gleason 3+3=6
Post-Surgery psa  -- .011
Removal of stricture 6-07, incontinence continues
01-15-08 psa -- .05
AUS, IPP implanted 07-16-08
AUS, IPP activated on 08-18-08.  They both work!
10-20-08 went back to surgeon for a follow-up.  Both devices work well.
10-20-08 psa -- .05
05-15-09 psa -- .07
 


Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 7/2/2010 1:11 PM (GMT -6)   
knotreel,

I am another of the two device guys. I am one year with the AUS and six months with the IPP.

I was totally incontinent for 12 months using 4 diapers and 8 pads per 24 hours and being soaked through when changed. Now, I wear a light pad each day to catch the drips when I sneeze or cough hard.

Due to my condition and surgery, I knew I would be totally impotent going forward. While I never tried the injections, my doctor told me Viagra, etc. would not help me a bit. I did try the VED for about 6 months without much success.

While my doctor said that he has performed both procedures in one surgery, he did not want to do that with me saying that my situation was a little different and the incontinence needed to be dealt with first.

I joke about having four balls in my sack, but I am happy to have the extra baggage. While I don't ride a bicycle, I think I know what Gene214 is talking about. I am careful when I get in and out of my truck to lift up and not slide across the seat. On two occasions I have done just that and my AUS when active and my bladder emptied. Thankfully, I was alone. The IPP does its job and fourplay is much better than with the VED.

Wigs
Diagnosed @ age 46 - September 1997
PSA 5 / Gleason 3+3
Seed Implant - January 1998 @ Trident Hospital, SC
PSA 2.4 - July 2007
PSA 2.7 - July 2008
PSA 3.0 - November 2008
Diagnosed @ age 57 - December 2007
Gleason 4+3
Salvage Prostatectomy & Colostomy - March 2008 @ MSKCC, NY
Suprapubic cathether installed - July 2008 @ Cleveland Clinic, OH
Urethral-Rectal Fistula Repair - August 2008 @   Cleveland Clinic, OH
PSA < .03 - Aug 2008
Penile catheter removed October 2008
Suprapubic catheter removed December 2008
Colostomy Reversal - January 2009 @ Cleveland Clinic
Urethral stricture removed - January 2009 @ Cleveland Clinic
(Total incontinence - 4 diapers & 6 - 8 pads per 24 hour period)
PSA < .03 - Jan 2009
AUS implant - May 2009 @ Cleveland Clinic
PSA < .03 - May 2009
AUS activated - July 2009
(Wearing a light pad daily.)
PSA < .03 - July 2009
Penile Implant - December 2009 @ Cleveland Clinic
PSA < .03 - December 2009
Penile Implant activated - February 2010
PSA < .01 - April 2010 
 

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