AMS 800 artificial urinary sphincter

ob66

harvs said:

Trew
I was going through 6-8 pads a day plus wearing protective underwear for the overflow. I kegeled myself to death, tried Tegress bulking injections, and clamps. Nothing worked.
This was a last resort and worked wonders.

New visitor
Picked up on your nice answers. I had daVinci prostatectomy 6/5/2010. Had a slightly elevated PSA last visit (0.05 to 0.07). Need radiation therapy. Am on three to four pads a day currently. Told it will not get better and could get worse with radiation. Doing the AUS sphincter surgery 5/10/2010. Any comments Harv? Worried about activation. Seems like a lot of warnings with regards to surgery---failure of appliance, infection, etc. Any comments? All help would be appreciated.

Trew

ob66 said:

New visitor
Picked up on your nice answers. I had daVinci prostatectomy 6/5/2010. Had a slightly elevated PSA last visit (0.05 to 0.07). Need radiation therapy. Am on three to four pads a day currently. Told it will not get better and could get worse with radiation. Doing the AUS sphincter surgery 5/10/2010. Any comments Harv? Worried about activation. Seems like a lot of warnings with regards to surgery---failure of appliance, infection, etc. Any comments? All help would be appreciated.

God Bless, ob66
Ob66, I hope it all goes well for you. keep us updates on appointments and outcome. I am getting better. I was so close to dry when I started radiation. I had a lot of swelling after radiation and the urologist PA back here in MI put me on a 6 day medrol RX which really opened up the flood gates for about 6 weeks. That is now slowing down to maybe 2- 3 pads a day, but still not good enough to be an active backpacker again- and I still have a lot of stress incontinence. If I just sat in a chair all day I woul be ok- but I can't do that- I want to be out on a the trail for a few more years. I have dream to one day hike the CDT end to end. Can't do that with wet underwear and sleeping bag.

And I know someone who is much worse off than I am but I think he is just going to live with it.

ob66

Trew said:

God Bless, ob66
Ob66, I hope it all goes well for you. keep us updates on appointments and outcome. I am getting better. I was so close to dry when I started radiation. I had a lot of swelling after radiation and the urologist PA back here in MI put me on a 6 day medrol RX which really opened up the flood gates for about 6 weeks. That is now slowing down to maybe 2- 3 pads a day, but still not good enough to be an active backpacker again- and I still have a lot of stress incontinence. If I just sat in a chair all day I woul be ok- but I can't do that- I want to be out on a the trail for a few more years. I have dream to one day hike the CDT end to end. Can't do that with wet underwear and sleeping bag.

And I know someone who is much worse off than I am but I think he is just going to live with it.

Radiation and incontinence
Thanks for your helpful reply Trew. Was wondering if there was anyone reading who went into radiation therapy with mild/moderate incontinence (3 pads a day), and either got better than that or stayed the same some time after radiation was completed? My incontinence has improved with physical therapy, caffeine and alcohol elimination, but is still not cured. Any input would be appreciated as I am probably going to have sphincter surgery unless I had high hopes without it. Thanks.

Trew

ob66 said:

Radiation and incontinence
Thanks for your helpful reply Trew. Was wondering if there was anyone reading who went into radiation therapy with mild/moderate incontinence (3 pads a day), and either got better than that or stayed the same some time after radiation was completed? My incontinence has improved with physical therapy, caffeine and alcohol elimination, but is still not cured. Any input would be appreciated as I am probably going to have sphincter surgery unless I had high hopes without it. Thanks.

PT?
Did physical therapy help you any? Any leakage is totally unacceptable with me. I am changing doctors this month and I will discuss with the new doc realistic expectations RE the future. I would love to put this entire cancer thingie behind me, but everytime I see the pad I am reminded that in a way I am still crippled.

ob, I am very much interested in how it goes with you. I am going to add you to my firends list and I hope we can keep in touch this coming year.

ob66

Trew said:

PT?
Did physical therapy help you any? Any leakage is totally unacceptable with me. I am changing doctors this month and I will discuss with the new doc realistic expectations RE the future. I would love to put this entire cancer thingie behind me, but everytime I see the pad I am reminded that in a way I am still crippled.

ob, I am very much interested in how it goes with you. I am going to add you to my firends list and I hope we can keep in touch this coming year.

Physical Therapy
The physical therapy helped immensely, but after ten months I am not all the way there, and need radaition therapy (thus the sphincter surgery). My urologist has an excellent PT who specializes in such things. Once a week visits since last November. Went from 10-12 pads to 5 or so 1 month ago. Now some of that was probably time, but a lot was due to the exercises IMHO. Now with quitting caffeine and alcohol, I am down to 3 pads a day. Found a way to have about 2 ounces of wine with dinner and I am OK.Lots of breathing exercises (yoga), stretches of quads, hams, etc., kegels done in many different PT ways using elastics, the ball, etc. The idea is to work the abdominal cavity to assist you in gaining control. I have nothing but the highest regard for my PT, and would recommended her and what I went though to anyone, even though not a complete reversal of my incontinence. Hope this helps.

Trew

ob66 said:

Physical Therapy
The physical therapy helped immensely, but after ten months I am not all the way there, and need radaition therapy (thus the sphincter surgery). My urologist has an excellent PT who specializes in such things. Once a week visits since last November. Went from 10-12 pads to 5 or so 1 month ago. Now some of that was probably time, but a lot was due to the exercises IMHO. Now with quitting caffeine and alcohol, I am down to 3 pads a day. Found a way to have about 2 ounces of wine with dinner and I am OK.Lots of breathing exercises (yoga), stretches of quads, hams, etc., kegels done in many different PT ways using elastics, the ball, etc. The idea is to work the abdominal cavity to assist you in gaining control. I have nothing but the highest regard for my PT, and would recommended her and what I went though to anyone, even though not a complete reversal of my incontinence. Hope this helps.

PT follow
I see my new doc on April 29 and I will certainly be discussing this with him. but even one day a day is too much for me. I must hike again. Any PT exercises you can post/descibe will ber appreciated.

iam144

harvs said:

Penile and Urinary Sphincter Implant Pumps
They fit very nicely - one on each side.
No "alterations" necessary.
No discomfort after initial adjustment

Artificial Sphncter plus Penile Implant
I had the AMS Male Sling plus their Penile Implant implanted on April 1, 2010. I am having a serious urinary retention problem. I can't completely void my bladder. Plus with the implant, my scrotum is very sore when I "pump it up" (2 times a day now).

It just feels funny having the third item inside my scrotum. I can't imagine having a 4th. However, if it would fix my retention problem and keep me from doing an intemittent catheterzation (did I spell that right?). I might approach my urologist about it.

JR1949

ob66 said:

Physical Therapy
The physical therapy helped immensely, but after ten months I am not all the way there, and need radaition therapy (thus the sphincter surgery). My urologist has an excellent PT who specializes in such things. Once a week visits since last November. Went from 10-12 pads to 5 or so 1 month ago. Now some of that was probably time, but a lot was due to the exercises IMHO. Now with quitting caffeine and alcohol, I am down to 3 pads a day. Found a way to have about 2 ounces of wine with dinner and I am OK.Lots of breathing exercises (yoga), stretches of quads, hams, etc., kegels done in many different PT ways using elastics, the ball, etc. The idea is to work the abdominal cavity to assist you in gaining control. I have nothing but the highest regard for my PT, and would recommended her and what I went though to anyone, even though not a complete reversal of my incontinence. Hope this helps.

Physical Therapy
OB66, I had radical prostatectomy March 2,2009 and now almost 14 months later, I am using 3-4 pads a day with diaper, no change of pad overnight tho getting up average of 1-3 times and still have leakage. I drink only caffeine free coffee and cola and no wine or alcohol. I have not done kegels as often as I should. Looks like you have had success with physical therapy. I see my urologist for 6 month followup and plan to ask what are my options and physical therapy was one thing I plan to ask about.
Thanks for sharing your experience with physical therapy. I'll let you know what my orologist says. If he does not offer any options other than scotum implant, then I will seek a second opinion.

Skid Row Tom

AUS wearer
I've had an artificial urinary sphincter implant for over three years. I absolutely DID NOT WANT THIS -- but under the circumstances, if I had to do it all over again, I'd do it. The surgery's a ****, it's not perfect, but it gave me my life back. I can do anything anybody else can do. I go to the gym regularly, ride a motorcycle, and go about my normal business. I still have to wear a "pantiliner" (I wish they'd call it something different for men), but it's thin and unnoticeable.

Give me specific questions and I'll try to give you specific answers.

Tom

lion1

JR1949 said:

Physical Therapy
OB66, I had radical prostatectomy March 2,2009 and now almost 14 months later, I am using 3-4 pads a day with diaper, no change of pad overnight tho getting up average of 1-3 times and still have leakage. I drink only caffeine free coffee and cola and no wine or alcohol. I have not done kegels as often as I should. Looks like you have had success with physical therapy. I see my urologist for 6 month followup and plan to ask what are my options and physical therapy was one thing I plan to ask about.
Thanks for sharing your experience with physical therapy. I'll let you know what my orologist says. If he does not offer any options other than scotum implant, then I will seek a second opinion.

JR1949-Know what you're going through
JR,
I have found and stated it before, it doesn't matter what I drink, I leak profusely. I once quit coffee for a week--no change. Water goes through me like nothing---I have to get this contracting bladder under control----my Doc is trying these Botox Injections. The first one I had did nothing, but I only got 100 units. Typically they give 200 units. But, I like my Doc's approach. 3-4 pads a day---4 years this June----Man what a ride!!

Lion1

lion1

JR1949 said:

Physical Therapy
OB66, I had radical prostatectomy March 2,2009 and now almost 14 months later, I am using 3-4 pads a day with diaper, no change of pad overnight tho getting up average of 1-3 times and still have leakage. I drink only caffeine free coffee and cola and no wine or alcohol. I have not done kegels as often as I should. Looks like you have had success with physical therapy. I see my urologist for 6 month followup and plan to ask what are my options and physical therapy was one thing I plan to ask about.
Thanks for sharing your experience with physical therapy. I'll let you know what my orologist says. If he does not offer any options other than scotum implant, then I will seek a second opinion.

JR1949-Know what you're going through
JR,
I have found and stated it before, it doesn't matter what I drink, I leak profusely. I once quit coffee for a week--no change. Water goes through me like nothing---I have to get this contracting bladder under control----my Doc is trying these Botox Injections. The first one I had did nothing, but I only got 100 units. Typically they give 200 units. But, I like my Doc's approach. 3-4 pads a day---4 years this June----Man what a ride!!

Lion1

lion1

JR1949 said:

Physical Therapy
OB66, I had radical prostatectomy March 2,2009 and now almost 14 months later, I am using 3-4 pads a day with diaper, no change of pad overnight tho getting up average of 1-3 times and still have leakage. I drink only caffeine free coffee and cola and no wine or alcohol. I have not done kegels as often as I should. Looks like you have had success with physical therapy. I see my urologist for 6 month followup and plan to ask what are my options and physical therapy was one thing I plan to ask about.
Thanks for sharing your experience with physical therapy. I'll let you know what my orologist says. If he does not offer any options other than scotum implant, then I will seek a second opinion.

JR1949-Know what you're going through
JR,
I have found and stated it before, it doesn't matter what I drink, I leak profusely. I once quit coffee for a week--no change. Water goes through me like nothing---I have to get this contracting bladder under control----my Doc is trying these Botox Injections. The first one I had did nothing, but I only got 100 units. Typically they give 200 units. But, I like my Doc's approach. 3-4 pads a day---4 years this June----Man what a ride!!

Lion1

lion1

Skid Row Tom said:

AUS wearer
I've had an artificial urinary sphincter implant for over three years. I absolutely DID NOT WANT THIS -- but under the circumstances, if I had to do it all over again, I'd do it. The surgery's a ****, it's not perfect, but it gave me my life back. I can do anything anybody else can do. I go to the gym regularly, ride a motorcycle, and go about my normal business. I still have to wear a "pantiliner" (I wish they'd call it something different for men), but it's thin and unnoticeable.

Give me specific questions and I'll try to give you specific answers.

Tom

Tom--the AUS
Tom,

How long did you tolerate the incontinence before you made the AUS decision? Did you have a Sling prior to the AUS?

lION1

Trew

lion1 said:

JR1949-Know what you're going through
JR,
I have found and stated it before, it doesn't matter what I drink, I leak profusely. I once quit coffee for a week--no change. Water goes through me like nothing---I have to get this contracting bladder under control----my Doc is trying these Botox Injections. The first one I had did nothing, but I only got 100 units. Typically they give 200 units. But, I like my Doc's approach. 3-4 pads a day---4 years this June----Man what a ride!!

Lion1

A ride indeed.

A ride indeed.

Skid Row Tom

lion1 said:

Tom--the AUS
Tom,

How long did you tolerate the incontinence before you made the AUS decision? Did you have a Sling prior to the AUS?

lION1

To: Lion1
After prostate surgery, I was making excellent progress -- little if any incontinence. Then, I developed scar tissue (very slow urine) and had to be dilated. I believe the doctor dilated me too much (a 22 size) and my system never recovered. I was totally incontinent for 18 months. I wore Depends, the thickest pads I could buy, sometimes wearing both. I finally heard of a Cunningham Clamp and bought one. It is somewhat of a Medieval torture device, but allowed me to continue to work. My urologist tried one of the "filler injections", but it was EXTREMELY expensive and there was no change (although I was aware it may take as many as five injections to see significant results). Several urologists advised me against the sling -- apparently this procedure works better on women. My main urologist kept telling me that the AUS was the "gold standard", but I resisted saying that "I didn't want any contraption in my body". After 18 moths, I couldn't take it any more and got the AUS. I feel the surgery was worse than my radical prostatectomy. But, after everything healed, I managed to regain control of my life. Like I said, it's not perfect, I still have to wear a liner (although many people don't), but one liner gets me through the day and night with a little dime to quarter-sized spotting. I ride a motorcycle, but have given up my bicycle (seat too uncomfortable), have to wear a medical I.D. dog tag, and have to use the stall in public restrooms to pee (it takes two hands to pee -- one to squeeze the pump and one to aim), but I have all my sensations, it doesn't hurt to squeeze the pump, and the thing's been operating fine for 3+ years.

lion1

Skid Row Tom said:

To: Lion1
After prostate surgery, I was making excellent progress -- little if any incontinence. Then, I developed scar tissue (very slow urine) and had to be dilated. I believe the doctor dilated me too much (a 22 size) and my system never recovered. I was totally incontinent for 18 months. I wore Depends, the thickest pads I could buy, sometimes wearing both. I finally heard of a Cunningham Clamp and bought one. It is somewhat of a Medieval torture device, but allowed me to continue to work. My urologist tried one of the "filler injections", but it was EXTREMELY expensive and there was no change (although I was aware it may take as many as five injections to see significant results). Several urologists advised me against the sling -- apparently this procedure works better on women. My main urologist kept telling me that the AUS was the "gold standard", but I resisted saying that "I didn't want any contraption in my body". After 18 moths, I couldn't take it any more and got the AUS. I feel the surgery was worse than my radical prostatectomy. But, after everything healed, I managed to regain control of my life. Like I said, it's not perfect, I still have to wear a liner (although many people don't), but one liner gets me through the day and night with a little dime to quarter-sized spotting. I ride a motorcycle, but have given up my bicycle (seat too uncomfortable), have to wear a medical I.D. dog tag, and have to use the stall in public restrooms to pee (it takes two hands to pee -- one to squeeze the pump and one to aim), but I have all my sensations, it doesn't hurt to squeeze the pump, and the thing's been operating fine for 3+ years.

AUS
Tom,

Thanks so much for your detailed response. I really appreciate this. Not sure if an AUS is in my future. But, your honest response gives me a good indication on what to expect if I have to get one. Wish you the best.

Many thanks again,

Lion1

Trew

Looking at AUS Failure rates
A bit old, but here is an article on the failure rate of the AUS (artificial urinary device).

http://www.medkb.com/Uwe/Forum.aspx/cancer-prostate/3506/Artificial-Sphincter-Studies

I wonder if there are any more current studies on failure rates? The incision for implanting this device is made between the scotum and the rectum- legs up and spread apart. All this trouble from a little tiny cancer!

Skid Row Tom

Trew said:

Looking at AUS Failure rates
A bit old, but here is an article on the failure rate of the AUS (artificial urinary device).

http://www.medkb.com/Uwe/Forum.aspx/cancer-prostate/3506/Artificial-Sphincter-Studies

I wonder if there are any more current studies on failure rates? The incision for implanting this device is made between the scotum and the rectum- legs up and spread apart. All this trouble from a little tiny cancer!

AUS life span
I've had mine 3+ years. I've read that the AUS lasts 7-10 years. My urologist told me he put one in 17 years ago and it's still operating fine. I sure don't look forward to going through that surgery again, but if that's what it takes to lead a "normal" life, I'll do it.

Trew

Skid Row Tom said:

AUS life span
I've had mine 3+ years. I've read that the AUS lasts 7-10 years. My urologist told me he put one in 17 years ago and it's still operating fine. I sure don't look forward to going through that surgery again, but if that's what it takes to lead a "normal" life, I'll do it.

7- 10 Year Life Span
Maybe in 7- 10 years the AUS will be even better.

Typical day for me. I used the same pad I slept in to exercise this monring. I came home and showered and and put a new pad in. Same pad I have been wearing all day now. I'll put a fresh one in before going to bed, and then change again in the morning. But the more exercise- like lifting, carrying, etc the more pads I will use. And one day may not be typical of the next. Still, do I want to go through surgery just to get right of 2- 4 pads a day? But then I think how often I modify my behavior without really thinking about it so I don't stress the bladder and leak.

So, Skid Row, do you use any pads at all with the AUS in? Are you like 100% dry- like before surgery? I so much wouldlike ot go out backpacking again but I can't if I am wetting a pad every hour or two- which I do if I am carrying a pack.

I am going to go slow and carefully on this decission. the first surgery did not turn out like I expected- my confidence is shaken in regards to a second.

Skid Row Tom

Trew said:

7- 10 Year Life Span
Maybe in 7- 10 years the AUS will be even better.

Typical day for me. I used the same pad I slept in to exercise this monring. I came home and showered and and put a new pad in. Same pad I have been wearing all day now. I'll put a fresh one in before going to bed, and then change again in the morning. But the more exercise- like lifting, carrying, etc the more pads I will use. And one day may not be typical of the next. Still, do I want to go through surgery just to get right of 2- 4 pads a day? But then I think how often I modify my behavior without really thinking about it so I don't stress the bladder and leak.

So, Skid Row, do you use any pads at all with the AUS in? Are you like 100% dry- like before surgery? I so much wouldlike ot go out backpacking again but I can't if I am wetting a pad every hour or two- which I do if I am carrying a pack.

I am going to go slow and carefully on this decission. the first surgery did not turn out like I expected- my confidence is shaken in regards to a second.

The AUS and pad use
I'll never be back to the old "normal". I can't spend a lot of time thinking about it, or I know I'll get terribly depressed. I've had to adapt to the "new normal". It sounds like you're active, and so am I. If I have a day of relative inactivity (e.g., goofing around the house, watching a ballgame on T.V., going out to dinner with my wife), one "pantiliner" is more than enough. It will last all day and all night. For instance, yesterday, I rode my motorcycle to a festival -- about 225 miles -- walked around, ate, got on and off my bike, went to the grocery store when I got home, did some housework, and there was a dime-sized spot on my liner. However, if I go to the gym, work on the weight machines (either upper or lower body -- and upper body seems to cause more problems believe it or not), and walk/jog three miles,I use a Tena brand "Slender Pads, Ultra Thin" -- the package with two water drops on it. I'm not sure a liner would be sufficient. My son and I did a lot of hiking in Alaska last fall, and the liner lasted all day. However, for serious hiking or backpacking (like on the Appalachian Trail or a day hike that would require major elevation changes), I would wear the two-drop pad. My urologist said he could do a second operation and put in a second cuff which would almost "guarantee" 100% dryness. But no thanks -- not ready for that yet. Your last comment said a lot -- you must consider the extent to which the incontinence is controlling your life. Without the AUS, I would wear a heavy pad and could go ONE PLACE, for instance, out to eat. If my wife wanted to get groceries after we ate, I couldn't do it. I had to go home a change pads. About once a month, the heavy pad couldn't hold it and it would leak through to my pants. Awful! I had to have pads with me all the time -- in my car, at work. Other than the physical distress, I was FREAKIN' MISERABLE. Urine controlled my life. Like I said, the AUS gave me my life back (at least 95% of it) and I can't tell you how I fought against have this thing implanted. I tried PT, injections, medications, the Cunningham Clamp, etc. But now, depending on the day, my only decision is "a liner or a thin pad?". I would imagine, in your case, you ask "should I go backpacking today?" or "I wish I could hike today". If that sounds like you -- the yellow stuff is in control. I never ask anymore if I should do something. I just do it and prepare accordingly. By the way, a number of people that get the AUS are totally dry. As usual, I seem to be the exception.