AMS 800 artificial urinary sphincter

jim65

taking a leak by the road side

Day 11, We went away for the weekend. We drove through the bush (isolated country side). I took a leak by a tree twice. I know that sounds simple, but for the last 13 months I have always had to find toilets (and preferably handicapped toilets to dispose of the pad). It's a sense of freedom, and manliness to be able to piss by a tree. And I used public urinals (not the handicapped toilet). "one small step for a man, but a giant step toward freedom

jim65

Dramatic Change Report on First Day

Day 1 Activation Day (30 May 2013)

I just feel so much better about myself.

Dramatic change the amount of in urine in pads
Before AUS operation urine volume in pads 860 ml (29 oz)
after AUS operation urine volume in pads 640 ml (21 oz)

after AUS turned 10:00 am on 18 mls  (o.6 0z) in the pad till bed.

Over night 8 mls  (0.27) in the pad

(Bladder holds about 200 mls (6.7 oz) at present.)

First time I used it, the urine gushed out and  I got my hands all wet,
but I got better from then on.
I used the pump about 9 times yesterday. (first day)

At present I only need to squeeze the pump once (maybe when I bladder holds more I'll need to do it twice).

I have also discovered that once I sweeze the pump I can hold the urine with my PC muscles till I'm ready to release.
So when I got up this morning I could hold on until I got a measuring cup ready.
In the morning 200 mls. (that felt very full) So eventually I hope I can hold a bit more than that.
I only got up once in during the night too (have been getting up 3 times) so that's a great improvement too.

I asked the surgeon about the pump being so high. He said the surgeon makes a pocket in the scrutom, but if the pump moves up, then the pock heals (closes up) so there is no way to get it lower.

But using it 9 times yesterday, it seemed to get a bit easier to reach as the day wore on. I still have to feel carefully to find the flat side of the pump. The Dr says the tissue should thin out a bit as time goes on.

I was using 8 Tena Men's number 3 pads (8 pad cost $12 in australia, so spending $3,500 a year in pads!) ($12 a day)

I think I'll be using one or two Tena Men's number 1 or 2 pads a day.  About $1.20 a day. ($350 a year)
I hope to start Prostate Support Group in Balaklava (with PCFA Prostate Cancer Foundation of Australia)
and do the training to be an Ambassador (a speaker at Prostate Awareness meetings)

jim65

jim65 said:

Pissing before I squeeze the pump

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)

 

Still sitting on a blow up ring

Day 2 (31 May 2013)

I'm still sitting on a blow up ring.

I can sit for a short time without the ring (15 min)

but then I can feel the pump digging into me, and the pereneam (where the stiches are) feels bad.

Maybe this will get better later?

jim65

Post abdominal operation core exercises

Day 4 (2 June 2013)

My core muscles were too weak after no activy for 6 weeks (hard gettomg out of bed).

I don't think it would be good to go back to the same level core exercises that I was doing before (too big a jump).

So I found some post abdominal surgury core exercises. I have done them for 4 days. Heaps easier to get out of bed, and my gut is tightening up. :-)

http://www.livestrong.com/article/123582-abdominal-exercises-safely-postabdominal-surgery/

Now I am slowly going to build back up to where I was.

jim65

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.

 

 

Stessing too much

Day 7 (5 June 2013)You're right.

I think I am stressing too much. (Day 4 of using the AUS)

1.  The surgeon said to find the flat side and squeeze it. I have decided that trying to find this flat side is just too hard and it doesn't really matter. The bottom of the pump is soft. It doesn't matter where I squeeze it, it works

2. I've been sitting without the blow up ring all day long. Minimal discomfort.

jim65

Scrotal skin has gotten thinner easier to squeeze

Day 7 (5 June 2013)

Just like the surgeon said, the scrotal skin (and or tissue) has gotten thinner and it is easier to squeeze the pump.

Day 7 of using the AUS.

jim65

Leaking More

Day 14

I seem to be leaking a bit more than before. Just after activation I used to use only one Tena Nu 1 pad a day, then one was getting too wet so I started using  2 Tena Nu 1 pads a day. Yesterday both pads were drenched.  So today I am trying a Tena Nu 2 pad (much thicker). This is a little disapointing. I think I leak especially when I get up to go to the toilet.

Possible causes

1. I am being more active?

2. Maybe the swelling is going down, and the cuff is looser?

3. I am drinking more fluids?

I doubt that this is something that can can be adjusted (without surgery)

I am working on PC muscles again (Kegels). Maybe I need to use my PC muscles the same way that other guys do afte RP without a AUS. (e.g. tighten the muscles when I get out of a chair etc).

I am still massively better than I was before the AUS.

4 Maybe too much coffee? (drinking 3 Nespreso Decaf Flat white last couple of days). Try Coffee free today (Day 15)

 

dmdc

jim65 said:

Leaking More

Day 14

I seem to be leaking a bit more than before. Just after activation I used to use only one Tena Nu 1 pad a day, then one was getting too wet so I started using  2 Tena Nu 1 pads a day. Yesterday both pads were drenched.  So today I am trying a Tena Nu 2 pad (much thicker). This is a little disapointing. I think I leak especially when I get up to go to the toilet.

Possible causes

1. I am being more active?

2. Maybe the swelling is going down, and the cuff is looser?

3. I am drinking more fluids?

I doubt that this is something that can can be adjusted (without surgery)

I am working on PC muscles again (Kegels). Maybe I need to use my PC muscles the same way that other guys do afte RP without a AUS. (e.g. tighten the muscles when I get out of a chair etc).

I am still massively better than I was before the AUS.

4 Maybe too much coffee? (drinking 3 Nespreso Decaf Flat white last couple of days). Try Coffee free today (Day 15)

 

Leaking More

Jim --

Any chance that you've "deactivated" the system with the pushbotton at the top of the pump? Even, possibly, deactivated the system with the cuff only partially inflated? I'd also guess that your thought of swelling going down making the cuff looser might be a possibility.

Thanks for reporting. I'm watching carefully.

Doug

jim65

Squishing noise

Thanks Doug for the helpful question.

I think it's still on because.

1. I can still hear the swquishing noise when I squeeze the pump.

2. Usually the urine doesn't come out when I stand at the toilet (unless it's really urgent), but the urine comes out quickly when I squeeze the pump.

Now that I using the pump one-handed, I'm not touching the top of the pump any more (When I was trying to find the top of the pump I was really worried that I would turn it off, that's why I have switched to one-handed.)

I don't wait 90 seconds to pull up my pants, so there could be some dribble then, but I think it's mostly when I put pressure ont he bladder through movement, or when my bladder feels full (It doesn't hold much, maybe 200 ml)

 

 

 

jim65

if it was turned off

Doug

If it was turned off, wouldn't I be back at square one, 800 ml a day, 8 big pads a day?

Jim

jim65

Appt to see the Surgeon

Day 16

The sister (nurse) gave me a urine "dip test" I don't appear to have a urinary infection.

I have an appointment to see the surgeon on Monday. (that will be day 18)

Maybe this is as good as the surgeon can make it. It would be nice to know rather instead of guess.

In the mean time I am keeping "A Bladder and Pad Weight Diary" for 24 hours so I know accurately what is happening. But of course I didn't measure anything on the first days to compare with it.

Jim

 

jim65

Okay, so I'm not the only one

AMS800 An Excellent Track Record

"More than 100,000 men worldwide have received the AMS 800 Urinary Control System. For almost 35 years, physicians worldwide have been implanting the AMS 800 as an effective treatment for stress urinary incontinence in men. The AMS 800 has been proven to be effective in the treatment of male incontinence following prostate surgery, and is considered the gold standard by most urologists. When using this device, most men are dry, with only minor leaks or dribbles of urine, usually with strenuous exercise or exertion. Most men use one pad or less per day to manage these minor leaks. As with any medical procedure, the AMS 800 is not 100% effective in all patients. Some men may require additional protection."

http://bladder-health.net/artificial-urinary-sphincter-implant.htm

I don't know that it is worth doing anything about it. I'll find out when I see the surgeon.

dmdc

jim65 said:

if it was turned off

Doug

If it was turned off, wouldn't I be back at square one, 800 ml a day, 8 big pads a day?

Jim

If it was turned off...

Jim 65 --

I was imagining that the deactivate button might have been pressed before the cuff had completely filled, and therefor the AUS was providing only a minimal closure of the urethra. Enough to avoid the 8 pads a day, but not enough to avoid some stress problems. But if the pump is squishing normally that's not a likely situation. More important is your observation that even this "gold standard" type of treatment does not guarantee no pads at all. I don't know what fraction of AMS 800 users need pads, but, as the information you've quoted suggests, one pad a day may be as good as it gets. 

I am a one pad a day guy now, except when I'm active and walking or hiking. Then almost all my urine production ends up leaking out. My hope is that the AUS will allow me to do things that cause stress incontinence and keep me dry or nearly so under those conditions. 

Thanks for the ongoing notes. I'm watching with interest. 

Doug

jim65

Wrong size cuff

Day 20

The Surgeon says, cuffs come in small, medium and large, (and also extra small which they use in replacement operations). My urethra doesn't have much tissue around it already (maybe from PR op, I say just because everything down there is small). So he put the small cuff in, which is really too big for me!

I didn't know whether to laugh or cry! So my cuff has stress incontinence. He had my lay on the table and cough and urine came out. So I could have another operation and have the extra small cuff put in. I think it is way to soon to have another operation. Beside we are going on a tour of the USA end of September-Ocober.

The bladder is also senstive (sometimes gets  upset and wants to empty itself forcefully) so He has put me on "vesicare" a bladder relaxant,

It's just hard to imagine, you cut a guy open and say "Oh, gee this cuff is too big. What the hell, I guess I put in it anyway!!! Some "Gold Standard!" I guess in fairness, they must not have had any extra small cuffs in the operating theatre. The doctor's office is only 20 doors down from the hospital, but maybe they have to order the extra small cuffs in specially.

Where to from here? For now, I'm going to go back to the Pelvic floor exercises, and see if I can learn to control some of the leakage with that. I need to stay positive, I only  have 10% of the leakage I had before (from 800 mls to 80 mls). And I'll try the Vesicare and see if I can calm the bladder spasms down.

 

dmdc

jim65 said:

Wrong size cuff

Day 20

The Surgeon says, cuffs come in small, medium and large, (and also extra small which they use in replacement operations). My urethra doesn't have much tissue around it already (maybe from PR op, I say just because everything down there is small). So he put the small cuff in, which is really too big for me!

I didn't know whether to laugh or cry! So my cuff has stress incontinence. He had my lay on the table and cough and urine came out. So I could have another operation and have the extra small cuff put in. I think it is way to soon to have another operation. Beside we are going on a tour of the USA end of September-Ocober.

The bladder is also senstive (sometimes gets  upset and wants to empty itself forcefully) so He has put me on "vesicare" a bladder relaxant,

It's just hard to imagine, you cut a guy open and say "Oh, gee this cuff is too big. What the hell, I guess I put in it anyway!!! Some "Gold Standard!" I guess in fairness, they must not have had any extra small cuffs in the operating theatre. The doctor's office is only 20 doors down from the hospital, but maybe they have to order the extra small cuffs in specially.

Where to from here? For now, I'm going to go back to the Pelvic floor exercises, and see if I can learn to control some of the leakage with that. I need to stay positive, I only  have 10% of the leakage I had before (from 800 mls to 80 mls). And I'll try the Vesicare and see if I can calm the bladder spasms down.

 

Jim --

I am very sorry to hear that your incontinence has returned so quickly post op, though it's good that it's much reduced. That the device was not a good fit for you is very trying, indeed. Considering the discomfort attendant in the surgery, this poor result is a big deal. I've read that 25% of these AMS800's are revised in the first five years. Now we know what group you are likely to fall into. 

Best wishes...   Doug

PaulBostonMA

Pump very noticeable when I have an erection

Hi All - Another embarrasing conversation - prostate cancer has forced me to set aside my pride on more than one occassion!

I had the AUS installed 3 weeks ago.  Like Jim65, the pump is located in a very high position.  I pulled on it twice daily as instructed by my surgeon - but it never moved down and still will not.  I am pulling on it - probably harder than I should.  In my mind, the balloon and cuff were located too far away to allow for an adequate positioning of the pump.  It is not painful, but when I get an overnight erection, the pump becomes very noticeable - it pokes the scrotum wall at the top of the scrotum and no amount of manipulation hides it, or gets it out of the way.  I am worried that it will interfere with intercourse- I cannot see how it won't.

I went to the doctor yesterday and saw the hurse practitioner - she said it was the highest placement she'd ever seen. (ugh).  She told me that I should continue to pull it down, but I am just causing myself pain during what appears to be a futile exercise.  She mentioned that the surgeon may need to perform add'l surgery to see what is going on.

 

Has anyone had this experience?  Jim - does the pump intefere with erections?  not a question you hear everyday - Im sure :-)

Thanks,

Paul

 

PaulBostonMA

jim65 said:

Wrong size cuff

Day 20

The Surgeon says, cuffs come in small, medium and large, (and also extra small which they use in replacement operations). My urethra doesn't have much tissue around it already (maybe from PR op, I say just because everything down there is small). So he put the small cuff in, which is really too big for me!

I didn't know whether to laugh or cry! So my cuff has stress incontinence. He had my lay on the table and cough and urine came out. So I could have another operation and have the extra small cuff put in. I think it is way to soon to have another operation. Beside we are going on a tour of the USA end of September-Ocober.

The bladder is also senstive (sometimes gets  upset and wants to empty itself forcefully) so He has put me on "vesicare" a bladder relaxant,

It's just hard to imagine, you cut a guy open and say "Oh, gee this cuff is too big. What the hell, I guess I put in it anyway!!! Some "Gold Standard!" I guess in fairness, they must not have had any extra small cuffs in the operating theatre. The doctor's office is only 20 doors down from the hospital, but maybe they have to order the extra small cuffs in specially.

Where to from here? For now, I'm going to go back to the Pelvic floor exercises, and see if I can learn to control some of the leakage with that. I need to stay positive, I only  have 10% of the leakage I had before (from 800 mls to 80 mls). And I'll try the Vesicare and see if I can calm the bladder spasms down.

 

Phew

At least you found the source of the problem - it is merely mechanical.  I am also facing the prospect of add'l surgery and will do it to make this right.  It has been a long journey and I have the time and incentive to continue - though the number of things that can go wrong are significant.

Best of Luck!

jim65

PaulBostonMA said:

Pump very noticeable when I have an erection

Hi All - Another embarrasing conversation - prostate cancer has forced me to set aside my pride on more than one occassion!

I had the AUS installed 3 weeks ago.  Like Jim65, the pump is located in a very high position.  I pulled on it twice daily as instructed by my surgeon - but it never moved down and still will not.  I am pulling on it - probably harder than I should.  In my mind, the balloon and cuff were located too far away to allow for an adequate positioning of the pump.  It is not painful, but when I get an overnight erection, the pump becomes very noticeable - it pokes the scrotum wall at the top of the scrotum and no amount of manipulation hides it, or gets it out of the way.  I am worried that it will interfere with intercourse- I cannot see how it won't.

I went to the doctor yesterday and saw the hurse practitioner - she said it was the highest placement she'd ever seen. (ugh).  She told me that I should continue to pull it down, but I am just causing myself pain during what appears to be a futile exercise.  She mentioned that the surgeon may need to perform add'l surgery to see what is going on.

 

Has anyone had this experience?  Jim - does the pump intefere with erections?  not a question you hear everyday - Im sure :-)

Thanks,

Paul

 

Pump and Erections

Paul

Mate, if you are having night erections, you are a very lucky man! (I haven't met anyone who has erections without using pills, and even then they aren't anything to write home about.)

Okay, when I work on an "erection" (In hardness it might be a 5 out of 10, (= very soft) and in size one inch less than before), your erection is probably facing forward, (mine is hanging down) and the pump is facing down.

The pump is pretty small compared to an erect penis (even a small one).

I suspect the pump would more likely be pushed back towards you, than into a partner's body.

As for pulling the pump.

The surgeon told me, they make a "pocket" in your scrotum, and push the pump into that pocket. Of course your body wants to heal that pocket=close it up. So once that pocket is closed up, there is no way to push the pump into it. The pocked would have to be made again. Also there is plenty of hose length, but again the body is busy embedding the hose into  the healed tissue, so once their healed up you can't really pull them back down. So the surgeon would have to try to cut the hoses free from the flesh centemeter by centemeter.

I guess you should try sex, before you have another operation. Maybe it would be extra stimulation for a partner :-)

This is all a big adjustment, our bodies just are not the way they were before. It's like getting a dent in your new car. It takes me a while to grieve about the changes, and then get used to it. I think I like the high pump now, especially because I can use it one handed. (less impressed with the leakage, shrinkage, and ED

Jim

 

PaulBostonMA

jim65 said:

Pump and Erections

Paul

Mate, if you are having night erections, you are a very lucky man! (I haven't met anyone who has erections without using pills, and even then they aren't anything to write home about.)

Okay, when I work on an "erection" (In hardness it might be a 5 out of 10, (= very soft) and in size one inch less than before), your erection is probably facing forward, (mine is hanging down) and the pump is facing down.

The pump is pretty small compared to an erect penis (even a small one).

I suspect the pump would more likely be pushed back towards you, than into a partner's body.

As for pulling the pump.

The surgeon told me, they make a "pocket" in your scrotum, and push the pump into that pocket. Of course your body wants to heal that pocket=close it up. So once that pocket is closed up, there is no way to push the pump into it. The pocked would have to be made again. Also there is plenty of hose length, but again the body is busy embedding the hose into  the healed tissue, so once their healed up you can't really pull them back down. So the surgeon would have to try to cut the hoses free from the flesh centemeter by centemeter.

I guess you should try sex, before you have another operation. Maybe it would be extra stimulation for a partner :-)

This is all a big adjustment, our bodies just are not the way they were before. It's like getting a dent in your new car. It takes me a while to grieve about the changes, and then get used to it. I think I like the high pump now, especially because I can use it one handed. (less impressed with the leakage, shrinkage, and ED

Jim

 

Thanks

I am lucky in so many ways - the biggest of which is that I am cancer free 4 years after this ordeal began.  So, I start each day with gratitude - but somehow I still manage to whine!  :-). 

Thanks for the info - I was hoping that the pump would point into my body, but it points outward.  It has only been three weeks, so I am hopeful that I can retrieve enough length of hose to give it room to turn inward.

As far as nighttime erections, I was blessed with a gifted surgeon.  Despite removing half of my nerves, the remaining ones do rally.  So, this pump issue is taken in context.  Not sure why I cannot have it all!  :-)

Thanks Jim - best of luck...

jim65

Maybe I should have the cuff replaced

Day 21 Maybe I should have the cuff replaced. (But it would have to be after I get back from the trip to the USA.)