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Incontinence has recurred after AUS revision.............Help anyone!

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Posted 6/4/2015 9:35 PM (GMT 0)
Incontinence has recurred after AUS revision.

After I return from walking about 6 city blocks or doing light work in the garden I have to change a soaked pad. Initially I was using a liner pad but increasingly I have to use a heavier pads. Now during the day I could be standing or sitting down and spontaneous leaking occurs.

Originally the incontinence occurred after surgery 2008 but was mild and became severe in 2011 and had AUS AMS 800.
This worked great until Nov. 2014 when incontinence recurred. I was extremely unhappy so I had a revision of the cuff(April 2015) due to urethra atrophy probably from radiation in 2012.

I would like to hear from anyone who has had similar experience and what was the out come. Any other comments , suggestions or help would be greatly appreciated from other members.
Thanks

___________________________________________________________________________
PSA 2007 4.0 June 2008 5.8 age 71
Biopsy June 2008 prostate ca Gleason 3+4;
July 2008 robotic surgery
Capsule perf. 3 foci with perineural invasion, but seminal vesicles and ,Lymph nodes neg
PSA < 0.10 2009; PSA 0.12 2010; PSA 0.22 5/12 ; July 2012 external beam radiation
PSA following radiation 2012, 2013, 2014, <0.10
2011 urinary incontinence became severe and November 2011 AUS implant excellent results wit no pads
2014 November recurrence of incontinence noted which became severe over 4mo. with use of 6-8 pads/day
Revision AUS April 29 2015 Only cuff was replaced as M.D. felt other mechanisms were functioning well. revision necessary as atrophy
present probably due to previous radiation. Devise activated 2 weeks post op because only cuff was replaced and M.D. felt it was sufficient.
Posted 6/4/2015 11:30 PM (GMT 0)
I had my AMS 800 implanted in Jan 2011, it worked very well, no pad required, then slowly it started leaking a little so that a light pad was required. The degradation took about 8 months before I had to use a pad. I was hoping to regain the no-pad level so I got a smaller cuff in 2013 but after less than 6 months I was back to a pad. I wear just a shield, not a full pad. I don't get spontaneous leaks as you describe but if I have been sitting on the pad an stand up I can get a flow till the pad re inflates. Sometimes I think the pump bulb gets some external pressure which can also cause leaks, but I am still very satisfied with the device. I was 100% incontinent before the AUS, now just one shield per day.
I would suggest you think over your clothing, especially the under ware. I use the jockey pouch briefs with "H" front closure. They give support which keeping things in place and at the same time have a pouch effect that doesn't put much pressure on the pump bulb. Just a thought.
My AUS was done by Dr. Timothy Boone at Methodist Houston Medical Complex
Posted 6/5/2015 12:01 AM (GMT 0)
Hi Knotreel,

I am not familiar with he term shield vs pad. Can you describe the shield or give me the name of the product so that I can look it up? The first few weeks I was able to use a panty liner made by Poise. But as time went on as I became more active I needed a heavier pad. Not like the Depends pad that I used when I was 100% incontinent but something in between.

The 2 types of Jockey shorts that I know of are 1. Jockey briefs
2. Jockey Brief Boxer
Is it the latter that hugs your thigh maybe like an H shape?
Thanks for your comment. I really appreciate it.
Posted 6/5/2015 3:07 AM (GMT 0)
pads are marketed, among other things, as shields, guards and pads. The shields that depends sell is very light. "Guards" are sold by a number of companies, and offer more absorbency than the shields but less than pads. Pads are usually heavier with maximum absorbency. Pantie liners and really all women's products are too narrow to work well for men. Some of the men's products like the Tena guards are triangular shaped with a lot wider coverage. Right now I use the Tena Guards or Men's Assurance Guards.
I order all this type of product on line, walmart on line is a good source as well as Amazon, stores in my area seem to be really light in the men's products.
No, the "H" is the style of the pee opening, google jockey mens underware and you will see that there is a great variety of styles. the pouch briefs are the ones without legs, they have the same sort of fit in several leg lengths. I use the ones without legs. Again, I buy these online as I don't feel like running all over the place to find these.
Posted 6/7/2015 2:34 PM (GMT 0)
I just purchased the Depend shields and ordered the pouch Jockey briefs. If the shields are not
adequate I will order the Tena Guards. Even though I have had problems for years I never knew
about these products.
Thank you Knotreel. I will let you know how things are going.
prinx
___________________________________________________________________________
PSA 2007 4.0 June 2008 5.8 age 71
Biopsy June 2008 prostate ca Gleason 3+4;
July 2008 robotic surgery
Capsule perf. 3 foci with perineural invasion, but seminal vesicles and ,Lymph nodes neg
PSA < 0.10 2009; PSA 0.12 2010; PSA 0.22 5/12 ; July 2012 external beam radiation
PSA following radiation 2012, 2013, 2014, <0.10
2011 urinary incontinence became severe and November 2011 AUS implant excellent results wit no pads
2014 November recurrence of incontinence noted which became severe over 4mo. with use of 6-8 pads/day
Revision AUS April 29 2015 Only cuff was replaced as M.D. felt other mechanisms were functioning well. revision necessary as atrophy
present probably due to previous radiation. Devise activated 2 weeks post op because only cuff was replaced and M.D. felt it was sufficient.
Posted 6/11/2015 8:09 AM (GMT 0)
Prinx,

Check if your model is one of these

www.tga.gov.au/alert/ams-800-control-pump-artificial-urinary-control-system

"Health professionals and consumers are advised that selected lots of AMS 800 Control Pumps may not function as intended by the manufacturer, American Medical Systems Inc (AMS)."

if link does not work do a search for "AMS 800 Control Pump" on the www.tga.gov.au

all the best!
.
Posted 6/11/2015 1:31 PM (GMT 0)
Interesting. But it seems like it just deals with difficulty in activating the devise? If that is the case then "incontinence" they mention would be caused by not being able to activate it.
Posted 6/11/2015 1:47 PM (GMT 0)
I was told to deactivate 2-3 times per week to reduce the chances of atrophy.( I just had a revision because of atrophy)
I have noticed that the morning after activating that at times the pump appears full as if I had pressed to activate it. But unless I did it unknowingly at night, it activated by itself. That makes me curious about what happened to the batches that were sold in Australia.

I am 6 weeks post activation after surgery and I am wet after walking or doing some minor gardening. Sometimes I am doing nothing and I know I have a drip.
I am going for a cystoscopy in about a week to see if the cuff closes properly . I worry that it may appear closed but a microscopic opening may not be able to be viewed on cystoscopy.
My urologist also said I may need urodynamic studies.
Posted 6/11/2015 10:44 PM (GMT 0)
You would, at least, hope that AMS would contact us if we were in the bad batch, that is if AMS agrees that some were bad. I know in California things can be "bad" while working just fine elsewhere, maybe this is just that sort of thing playing out in Aussie land? However, if it turns out that yours is filling after deactivation, that would concern me.
Posted 6/18/2015 1:50 PM (GMT 0)
I can have leaks standing when I get to the two hour mark or so. Then I know I need to void and keep the pressure of my filling neobladder off the cuff. Sometimes I can hit the 4 hour mark, but not often. I drink a lot of water and produce a lot of urine. Day or night, standing or laying down I keep the two hour mark.

I have a neo bladder (bladder removed due to cancer) and my neo is not as stretchable as your normal bladder. But because of that, I am more aware of leakage and how it happens.

Any amount of pressure on the cuff, sitting on a more that soft surface, edge of a chair, certain type of bending, cleaning myself in the shower can put pressure on the cuff and can open it up slightly. I am so incontinent that if the cuff even slightly deflates I can leak a little or a lot.

After the original implant, I also wore a "shield" like what my wife uses. As time went on, I leaked more or had events where the bladder was full, the cuff deflated and the shield just could not handle the outflow. I generally went to a more absorbable pad and ended up wearing Men's Depends Guards Max. I go through one a day, but I place a folded paper towel between me and the pad to catch my daily leaks that occur from my activities.

I sit a lot, at my office chair, up and down on other chairs/sofas (I own a furniture store in Conroe TX), so I submit my cuff to some abuse in that manner. However, if I go on a run, walk, and I void first, I do not leak or am aware of it since I sweat a lot being in Texas.

I suppose the saline volume could be lessened overtime as the device ages. If it quits working, Dr. Boone says it just will deflate and will stop working. I am not looking forward to that day.

NEO
Posted 6/18/2015 3:15 PM (GMT 0)
I am 7 weeks post revision AUS( 4/29/15) and as the swelling from the surgery disappeared the incontinence returned. My urethra was adversely effected by radiation for PC in 2012. The AUS was originally installed in 2011.
My urologist told me yesterday that I would be a candidate for another revision but he suggested a transcorporal placement of the AUS cuff. This has been used successfully in patients with a compromised urethra from radiation, erosion , infection etc.

I recently obtained a MIC Clamp.(male incontinence clamp) It stops the flow and is reasonably comfortable.Paul Davis http://[email protected]
I have not tried any other clamp and I would be interested in comments .

If anyone knows about the transcorporal placement of the AUS cuff I would appreciate hearing from you.
Posted 7/3/2015 1:19 PM (GMT 0)
I am going to have the AUS 800 replaced July 8 2015. I had a revision on April 29 2015 and only the cuff was replaced . After activation I was still incontinent. I had a cystoscopy 2 weeks ago and it showed no movement of the cuff when the pump was pressed so my urologist thinks it may be a faulty cuff or reservoir.
Originally the pump was installed in the left scrotum. I am right handed.
For all those available please comment if you think I should have the pump installed on the right side or back to the left. The urologist gave me the choice. Let know if you are right handed or left and which side you have the pump installed.
prinx
Posted 7/3/2015 1:47 PM (GMT 0)
I am right handed and the day after I had my AUS installed it hit me, we didn't discuss which side to have it installed in. Lucky for me it was on the right side. I asked my doctor on my first visit after surgery, how did you know to put it on the right side? He said he just does it that way because MOST people are right handed.

For anyone having an AUS 800 installed for incontinence, discuss this with your surgeon first!

If you are having a new AUS installed prinx, I would suggest having it put on the right side. No use making it harder on yourself.

Hopefully the new surgery will correct the problem. Maybe you just had a bad pump to begin with. The surgery usually takes less than 90 minutes so why not have everything replaced. I guess you will have to go thru the 6 weeks wait for activation again.

I wish you the best of luck this time.

Bill from Florida cool
Posted 7/3/2015 4:05 PM (GMT 0)
Bill
Do you have to fixate the top of the pump with your left hand
and then squeeze the pump with your right hand?
Posted 7/3/2015 6:31 PM (GMT 0)
Yes, exactly! Guys say they can do it with one hand but I use both.

Bill from Florida cool
Posted 7/3/2015 8:17 PM (GMT 0)
Darn, that sucks. I got some kool pictures of the inside of my urethra taken during cystoscopy done before my revision, you could definitely see the thing close. I would definitely put is on the right.
Posted 7/4/2015 2:08 AM (GMT 0)
During the period after AUS surgery, waiting 6 weeks for reactivation can I use my MIC clamp ?
prinx
Posted 7/4/2015 4:41 PM (GMT 0)
I had the pump put in my right side, because I had a lot of surgery on my left, the surgeon thought it best to be there. Now I am right handed.. because he made a statement of it going on the right side, it seemed to me that he normally put it on men's left..

Did not think much about that till this post..

NEO
Posted 8/26/2015 6:20 PM (GMT 0)
I just had my AUS activated 2 days ago and ................. I am dry!!!
This is my third AUS surgery. First 2011 then revision 4/29/15 ......failure due to hole in cuff. Finally surgery on 7/10/15 and activation 8/24/15.
Thanks to Knotreel about the pouch Jockey briefs. they really support during the post op period and made it not necessary to use a Jock strap.
On to the next problem. E.D.
I have an appointment with Dr. that specializes in penile injections with bimix ,trimix etc etc.
Anyone have experience with having an AUS and also using the injections. Would appreciate comments.
prinx

_____________________________________________________________
PSA 2007 4.0 June 2008 5.8 age 71
Biopsy June 2008 prostate ca Gleason 3+4;
July 2008 robotic surgery
Capsule perf. 3 foci with perineural invasion, but seminal vesicles and ,Lymph nodes neg
PSA < 0.10 2009; PSA 0.12 2010; PSA 0.22 5/12 ; July 2012 external beam radiation
PSA following radiation 2012, 2013, 2014, <0.10
2011 urinary incontinence became severe and November 2011 AUS implant excellent results wit no pads
2014 November recurrence of incontinence noted which became severe over 4mo. with use of 6-8 pads/day
Revision AUS April 29 2015 Only cuff was replaced as M.D. felt other mechanisms were functioning well. revision necessary as atrophy
present probably due to previous radiation. Devise activated 2 weeks post op because only cuff was replaced and M.D. felt it was sufficient.
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Posted 8/26/2015 7:00 PM (GMT 0)
Congrats prinx, on getting activated now and everything working again.

Maybe next time they can just install a zipper so they can get it in there and "Tweak it" when they need to.

Hope that chapter is over for you now.

Bill from Florida cool
Posted 8/26/2015 7:49 PM (GMT 0)
Thanks Bill
Its been a real experience.
Now on to conquer ED. Hopefully the injections will work.
I prefer not to take oral medications.
prinx
Posted 8/26/2015 8:48 PM (GMT 0)

You said...
Anyone have experience with having an AUS and also using the injections.

Yes, but not at the same time. I had an implant put in at the same time as my AUS and injections are no longer possible.

Can't see where the AUS should cause problems with the injections. No part of the AUS is at all close to the area you will be injecting. Injecting is easier than you think. Good luck.

Oh, and congrats on getting dry.
Posted 9/26/2015 3:11 PM (GMT 0)
Glad your third surgery was a success.

I had my AUS put in twice (One surgery to have it partially taken out, then another to have it all taken out. Then one to put it all back in..)

Only here can we talk about our briefs...

I have been wearing very tight athletic type (Under Armor) type undershorts that hold my pad really tight against me. I do leak some, during the day, since I have a Neo Bladder, it does not stretch as much as a normal bladder. I bend over, sit on a hard surface, have a semi-full bladder, it leaks.

I learned, to wear a very tight fitting conforming underwear I buy at Target.

Brand name is JKY.

Then, because I wear a Tee shirt under my dress shirt, I also put on a pair of boxers to tuck my tee shirt in. It also provides me with another layer of protection incase of a larger leak.

I also fold up a paper towel to catch my daily dribbles ontop of my pad. I change the paper towel whenever I void out the bladder. Keeps my pad dry all day long.

I am very active, stand, sit, walk, pick up heavy objects, drink lots of water, coffee. So my bladder fills up and I just have learned to be pro-active on that basis.

Since you all have a normal bladder, are these things you deal with as well?

NEO
Posted 9/28/2015 6:41 PM (GMT 0)
Hi
I use the tight jockey pouch briefs suggested by Knotreel. They give a lot of support and seems to be better with the AUS for me.

I just started the TRIMIX. 3 attempts using the 1/2cc 100 unit syringes. Started with 5 units raised it to 8 units and last 12 units all on alternated days . Erection is present but not firm enough for penetration. Kind of frustrating but I was told that it will take time to slowly titrate the dose to get the adequate rigidity without ending up with priapism. Would appreciate any comments on how long it took for others to find the proper titrated dose.
prinx
Posted 1/7/2017 12:20 AM (GMT 0)
Checking to see if any of you guys are still active on the forum and have any updates on your AUS/AMS 800 experience and especially revision surgery.
I am now six years (July 2010) with my AUS and have gradually worked my way up to filling one pad daily when doing anything stressful like golf. Otherwise I may fill a pad 1/4 to 1/2 depending on activity and fluid intake.
I visited my URO today to discuss possible revision. We concluded that my life is fine and the one pad per day is a satisfactory thing to deal with. Part of my routine and does not limit anything I do. Doing revision comes with normal risks of surgery. Better to wait until and if I have a major change like failure of the cuff or severe change in it's effectiveness.
Would appreciate any insight anyone might have especially experiences with AUS revision surgery. Did it work/help. What prompted you to have the revision. Where/who did the surgery.
Thanks in advance for any help.
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