AMS 800 artificial urinary sphincter

You're so close to dead right it's almost frightening!

The thought of what's in store for next Thursday and the rest of my life is what has kept me going through some of the most uncomfortable times I have ever experienced these last two weeks.

It's quite funny how the mind works - last year when it was made clear to me that incontinence was something I had to accept (at least for a year) I kind of thought "oh well, that sucks but I'm alive so I've got the better option", then, as the year progressed I found myself putting that sense of relief behind me and getting really frustrated by not even being able to go to the showers at the gym without someone asking why I'm wearing a leg bag (I've used Conveen sheaths during the day and incontinence pants and a bottle at night for the last ten months rather than pads which I really couldn't get on with).  Then I finally hit the twelve month deadline and my oncologist agrees to refer me to the AUS specialist and I am like a kid with a new toy when he agrees to carry out the procedure in time for me to be "dry" when my wife and I travel to Morocco to celebrate her (fairly significant) birthday next month.

Then the last two weeks of pain and discomfort - but strangely I haven't gone down the "better of the options" route this time, I've just lived hour by hour knowing that some of the best brains in creation have created a solotion to my (and many thousands of other guys of course but they all come a distant second in my reckoning!) problem and counting the days down to activation.

So - all being well I'll report further later this week.

Hi, guys. I'm 68 planning an AUS. I am 28 months post robot assisted laporoscopic radical prostetectomy for a Gleason 8 cancer identified on biopsy. I was totally incontinent immediately after the procedure, using condom catheters and then a urinary receptacle called afex (http://arcusmed.com/).  I was working at getting my head around the idea that I'd be using a leg collection bag for the rest of my life, and would have to worry about leaking and wetting clothes an inopportune moments. I was highly motivated for improving my situation and engaged in pelvic floor rehabilitation, biofeedback training, kegal exercising, and electromagnetic stimulation of pelvic floor muscles. I tried a couple varieties of penis clamps which had to be tightened to the point of signficant discomfor and sometimes swelling in order to avoid leakage when I was out and about. I got a lot of support, and over the first six months I was finally able to graduate to pads. Over the next year I got down to one pad in 24 hours with almost no leaking at night, and only 15-60 cc during the day, so long as I was mostly sitting at my desk. I'd say that now, two years post surgery I am "socially continent," meaning I can go through a typical day without others being aware that I have an incontinence problem. 

But my life is not at a desk. I'm nearly fully retired, and my recreation, my exercise for health, and my peace of mind revolve around bicycling and hiking and camping. I love being outdoors. Before the prostate surgery I did a 4,000 mile bicycle ride across the country camping along much of the way. I'm presently planning a 2,000 mile hike along the Appalachian Trail, and cannot imagine how, given sanitary conditions along the trail, I could manage pads or catheters. I've talked to my urologists and they first recommended a bulking procedure. That appeared to be a little successful, and may be responsible for my minimal leakage during a non-stressful day. But if I go hiking, the stress of hours of walking, climbing, walking down hills and so on, pretty much totally overwealms my limited continence. A sling procedure has been suggested, but the surgeons are afraid that if they make the sling tight enough to provide continence under high stress hiking and climbing situations, I may have difficulty urinating most of the time, and may sometimes require catheterization because of obstruction. They've agreed to do an AUS. I have not picked a surgery date, but about two months out seems likely.

I have really appreciated reading on this thread about the realities of the post-op period and the recovery during the first month. And I'm gratified to hear that activation has restored continence to many. My hope is that activation will provide me with continence under the stressful conditions of backpacking in mountainous country.

I'd be particularly interested in the experiences of other men who are similarly active outside the house. And I'd like to hear from people who are 5 to 10 years out about whether they've required any revision of the device.

It's going to be an adventure. Thanks for the help.

Doug 

Hmmm

I was trying to go a bit longer, until I really needed to go. (I felt like I was leaking, all though the pad isn't all that wet.)

But when I grabbed the pump, it started shooting out before I squeezed the pump.

I didn't expect that to happen.

It's happened twice today (each time I had drunk some coffee--a bladder irritent.)

Okay, so maybe I can't let the pressure build up too much (or have to be careful with coffee etc-- :-( I was looking foreward to being able to drink real coffee--not decafe)

jim65 said:

No pad over night

Last night I slept without jocks(underpants) or a pad for the first time in 13 months.

I figure 8 ml isn't enought to worry about.

There was no sign that I leaked over night.

This is day two.

It is a lot harder to feel the pump today. Which is the flat side. Perhaps I am a bit swollen from using so many times yesterday. Hopefully it will settle down.

Boy I wish the pump was lower (not half in my body).

I wonder if the surgeon could give me a local and go in the side of the scrotum, (like a vasectoby) and make a new pocket and pull the pump down.

But I can't move the tubes at all. I guess the body has healed around them now. :-(

Jim

dmdc said:

Pump up high

Jim --

 

I hear that you're still a bit tender, and that the pump is a bit high and hard to deal with. Were you asked to or able to do the twice daily tugs on the tubing that others have mentioned?

Hope you become a pro at uting the machinery quickly.

 

Doug

(7 or 10 days later) When he took the stitches out, it was already high then. He said I should try to push it down twice a day, but he didn't think it would move much.

I wish he had told me to do it when I left hospital, but on the other hand, it was still so sore when he took the stitches out, it was hard to do.

(at least I don't remember him telling me to pull it when I left hospital).

I was wearing tight jocks (underpants) to hold the pads on. Maybe they pushed it up??

I'm not really sore from the operation. Just where I have been squeezing the pump is a bit thick and tender. It was easier to feel the sides when it was activated, so I expect when it calms down (the thickness goes away) it should get easier.

I've done it one handed sitting on the tolit twice. :-)

UKSteve said:

Activation done and all seems well.....

So - three weeks to the day after my implant my surgeon activated the AUS at 11.00am and pointed me at the bathroom and said I could shower and go home at 14.00!

Quality of life was immediately improved infinitely (and I use those words carefully, thoughtfully and with deep gratitude!) - were I a praying man I would be seeking the words to thank God for creating both the geniuses who invented and those who "install" these wondrous devices!

 

jm65  - your first post after activation was as wondefully positive as mine but, worryingly, you seem to be less impressed as the hours go by (although still confident).  Please keep the faith, it's such a huge change in life-style after the months of suffering (and again I use that word carefully) that incontinence imposes that any tiny little deviation from the first joyful use of the new skill will inevitably seem like a negative but please believe me, it will settle down soon and be just a normal technique that you can take for granted.

My wife took me out to a bar for a few beers to celebrate last night (Friday) and I even managed to use the urinal (OK there was nobody else in the restroom at the time but it was still the first time for fourteen months so it was quite an adventure) - I am so happy again it's difficult to believe that the last four years or so actually happened!

I've already taken steps to get involved in some sort of mentoring (but I don't think that's the right word) programme at my local health centre and I'm more than happy to communicate by e-mail with anyone who has doubts or needs re-assurance.

 

 

UKSteve,  That sounds good but only 3weeks to acivaction???  May-be they do it differently in the UK.  Glad to hear eveything is going find.  I changed my date to Sept 6th from July 27 because of family happings (wedding, babtisum, dedication, it's been a bad/busy summer) and I am/expecting a 6 weerecovery from what everyone else has been saying. I ho'm closer to your results.

JIM it's good to hear that you can use it with only one hand, that must make it nore convient.

What is the length of stay in hosp after the surgery??  1, 2 days??

Please keep us posted to your experience

thanks  Spark Plug

Today I turned the shower on, and suddenly felt the urge to go, and it started squiring out. I had not touched the pump yet. I put out at least 50-100 ml. I didn't empty my bladder first. It came out faster once I gave it a pump.

Note to self. Don't put the AUS under too much pressure, could be embarassing.

dmdc said:

AUS limitations?

Jim -- Thanks much for your day by day, blow by blow description of your experience. The Running Water Trick sounds like what would happen if a guy tried to urinate without opening the cuff with the pump. The bladder pressure would overcome the AUS. 

My particular interest in the AUS is staying mostly dry while engaging in high activity exercise like hiking with a pack. I'm scheduled for AUS placement in early July but wonder if I'll find that the cuff is not up to keeping me mostly dry during that kind of stress. I only use a pad a day, and then not soak the pad, when I'm not out and about, but even a five mile walk around town will soak my pads, and I'll likely need to swap them out during the day, if I'm out backpacking. It's that extra use of pads I'd like the AUS to help me avoid.

Anyone with experience in this area?  Thanks.

Doug

Doug:  I was a back-packer into the high Sierra fishing lakes much of my life.  Only about three miles per day and not a heavy load -- about 35 pounds including the old navy two-man life raft.  Three trips per summer continued into my mid 70ies and well after RPS in 2003 and thereafter incontinence of an average 2.3 Depends pads per day.  AUS800 was installed four months ago.  While I haven't been on a mountain back-pack venture since, the AUS800 cuff securely holds to the point of not a drop of drippage even on some pretty heavy yard work, like spraying Roundup over a two acre parcel using a 4-gal Solo back-pack sprayer.   I estimate the total pack weight to be about 45 pounds at capacity.  My yard is not like mountain climbing, but it isn't flat either.  So, at least in my case, I suspect the AUS800 would perform well on a mountain climbing trip. 

The pump and cuff work great.  However, I feel tubing runing crosswise under the urethra where the cuff should be near the surface at the perineum.  Sitting on the tubing is causing pain.  It's minimual on rising in the morning, but as I sit at this computer several hours per day, getting in and out of my car, and actually anytime sitting, the pain builds throughout the day to the point of taking pain meds three times per day.  I am seeing my surgeon next Monday to see what is happening.  I'm confident that a revision is possible.

That's my story.  Hope it helps.  tpelle

tpelle said:

Cuff Holds

Doug:  I was a back-packer into the high Sierra fishing lakes much of my life.  Only about three miles per day and not a heavy load -- about 35 pounds including the old navy two-man life raft.  Three trips per summer continued into my mid 70ies and well after RPS in 2003 and thereafter incontinence of an average 2.3 Depends pads per day.  AUS800 was installed four months ago.  While I haven't been on a mountain back-pack venture since, the AUS800 cuff securely holds to the point of not a drop of drippage even on some pretty heavy yard work, like spraying Roundup over a two acre parcel using a 4-gal Solo back-pack sprayer.   I estimate the total pack weight to be about 45 pounds at capacity.  My yard is not like mountain climbing, but it isn't flat either.  So, at least in my case, I suspect the AUS800 would perform well on a mountain climbing trip. 

The pump and cuff work great.  However, I feel tubing runing crosswise under the urethra where the cuff should be near the surface at the perineum.  Sitting on the tubing is causing pain.  It's minimual on rising in the morning, but as I sit at this computer several hours per day, getting in and out of my car, and actually anytime sitting, the pain builds throughout the day to the point of taking pain meds three times per day.  I am seeing my surgeon next Monday to see what is happening.  I'm confident that a revision is possible.

That's my story.  Hope it helps.  tpelle

Thanks, tpelle. That's pretty positive. I hope you have similar success when you get out backpacking as you have had managing weeds at home.

And I hope the issue of the tubing is resolved easily for you.

I appreciate the experience. Any other hikers/backpackers out there?

Doug 

jim65 said:

one-handed--mock 2

Day 9: I've been using the pump one-handed but with my pants around my ankles--not a good look for out in public, especially if the floor is wet!

I'm getting confident, so now I'm just opening my pants, and pulling my jocks down just enough so I can hold my penis with one and, and reach the pump with the other. If I get good at this I could stand at a urinal, and not have to hid in a cubicle. (and I'm also less likely to dribble on my pants.)

I'm suprised how far I have come in 9 days. The first few day it was really hard to feel the pump, bu the scrotum is much thinner and easier to work with now.

 

And pretty soon you will be an old veteran with the usage of the AUS. Just look back on your posts and see how far you have come in nine days. All we be well, and you will become as big a proponent as I am of the AUS in time...Keep it up..