AMS 800 artificial urinary sphincter

I have been reading all the comments here concerning the AMS 800 Sphincter.  I have a Uroligist in Boca Raton, FL that claims to have put in 100s of these over 20 years. I have full confidence in him as a surgeon.  I wear 1 to 2 pads a day, and the dripping is CONSTANT especially in the afternoon, or when I do strenuous lifting or a lot of walking (bang bang bang on the pavement go the feet and drip drip drip in unison with it).  I AM SICK AND TIRED OF WEARING THESE PADS as the quality of life SUCKS, especially when ya gotta find a bathroom to change it (or else it fills so much that it soils your clothes).  I am sure I am not saying anything NEW HERE.

So with that off my chest...I learned here about the ID bracelet...I have read up about care instructions following surgery...about sitting differently..nothing scares me, but I do have a qustion.....Since it is not turned on for 6 weeks, do I still wear a pad for those 6 weeks..in other words is it business as usual during that time ?

If any one would like to email me please feel free at captpaul71@yahoo.com.  Thanks 

shiredvd said:

AMS Sphincter

I am scheduled for surgery 1-21-15 and during pre-op instruction was told I would long tern have to mimimise bike riding, no horseback riding or rappelling. I was also told that I will have to alter the way I sit as well as length of sitting. I was told that anything that puts pressure on the space between the scrotum and the anus would reduce successful use of the AUS 800. What were you told before surgery? For 16 months I have used a condom cath and leg bag with leakage about once per month with no restrictions regarding activity so I wonder if quality of life is enough better to undergo surgery.  Thank you to anyone who may be able to give insight as I am confused.

Shiredvd,

By now you probably have the AUS installed and will soon know the answers to many of the issues you posed. In as much as my AUS has been working well for several years I can positively state that (baring unforeseen circumstances) you will be very happy to have the device.

On this, and other sites, the same questions keep coming up over and over. A natural concern for anyone contemplating this procedure. However, each of us is unique and results can vary. Here’s my evaluation at this point in time:

As others have stated. I don’t have complete continence. I give it about 85 to 90 percent. I use the thin Depends Shields and can get a good 24 hours on just one. Even so, I often change it just for odor control. As do others, slight movements while sitting or standing can cause minor leaks. I am extremely active (for my age of 72) and ride my new Colnago CLX3 three or four days a week with 125 to 150 total miles…many hours on the saddle. On my old Trek and my new Colnago I use a Selle SMP TRK saddle that has a very large center split and a down turned nose. My point…the cuff is not a problem with the correct choice in saddles. I’ve stepped down from jogging 6 to 8 miles on the days I don’t ride because of leg problems (lymphedema and knee issues from the RRP) so now it’s just a power walk. That keeps me out for several hours at a time…minor leakage not requiring a pad change.

I had a revision because the original pump kept rotating back under the cuff and I could not access both ends to hold and activate it. My Urology Babe replaced the pump and tied it permanently into a horizontal position toward the front. It still pulls back in a little on occasion but has not presented a major problem in activation.

My original intent to get a tattoo has gone by the wayside. I’ve now had so many medical procedures, my tolerance for more (elective) discomfort is nonexistent. Chemo, surgery and radiation for non-Hodgkin’s, ablation for AFIB, lithotripter for kidney stones, hernia repair, and more have taken much of the entertainment value out of watching what my army of MD’s can do to keep me glued together. But, while many of these procedures have undoubtedly saved my life, I have told them all that the AUS is the thing that LETS ME LIVE.

I’d do it again in a heartbeat, and will do it again when this one wears out.

Trew said:

I forgot about....

Josephg, You said:  "When the pump was activated, I could barely control its operation, and many times urinated all over myself, as well as the bathroom fixtures and floor."

 

Yep, that happens.  A man with a new AMS will have a few frustrating moments when his aim will be off.  I had to make a few garment changes myself getting used to the device.  But I had to make garment changes all the time before the AUS.  I remember having to walk out of a Meijer's store in Michigan completely wet- Very embrassing.  Those days are gone.

 

God bless the AUS800 and the doctors who implant them. 

 

Joseph, good report.  thank-you.

 

-Trew

It has been a long time Trew.....I recall having my AUS installed in June of 2010 and you wrestling with incontinence that was driving you bonkers for you had to abandon a very active lifestyle. Then, after much vaccilation, you went ahead and had it done (may guess sometime in 2011) and it sounds like your life of backpacking, etc. has come back to you. That, plus you are now the guru of the AMS...I think that is all so great...Like some others, I do not visit the website often, and know I should do so. But five years out it is still wonderful...I would not say 100%, but between 95-100%. There is some very mild leakage which is unnoticeable, but usually if I were to sit in a hard chair and then get up quickly, which can activate the appliance. So when I go out I wear a light Tena pad and have never had one problem.

So at the five year mark I would hope there are some users who have a longer experience than I, who can report in on how long their AUS lasted. I recall the doctor mentioning roughly a 10 year lifespan....I certainly do not look forward to replacement for the original surgery, although well worth it, was a doozy----testicles turned black and blue and swelled like grapefruit. Mobility was bad....Anyway, glad to hear you are doing so well, and if I get no response on this thread I may start a new one about AUS life span and replacement. I am so glad this is my only worry, as I a stage 3B, and have not had a trace on my ultrasensitive blood tests.

Cheers, Bob

I've been struggling with complete (75 male) incontinence for several months now and scheduled for an Artificial Urinary Sphincter AMS800 in early April 2017. I've had external beam radiation and seeds for prostate cancer about 2001 and Bladder cancer with BCG treatments in 2015. Currently I'm cancer free but in 2016 a urinary stricture developed and I had to self cath several times a day. This wasn't a pleasant experience but then magically the stricture disappeared and I became incontinent. With the stricture issue several urologists were recommending bladder removal but when I became incontinent my urologist then recommended condom catheters and or use of a clamp. After a lot of trial and error I finally found condom catheters that stayed on and got me free of wet pads. The condom catheters really work with some drawbacks and inconveniences but are clearly a lot better than wet pads (or self cath) . They could be a solution to my incontinence issue but the urologist recommended the AMS800 which seemed like a better solution than even the condom catheters. After reading this board I think have under estimated the AMS800 operation and the associated recover pain, giving me second thoughts on following through with the AMS800.

After reading the boards about AMS800 experiences, I'm not sure I found anyone with incontinence who has been using condom catheters and clamps for control before their AMS800 placement.

Have I missed something ?

If anyone out there has gone through the condom catheters phase then into a AMS800 please share your thoughts on going through with the procedure.

My Urologist has said that in the 8 week recovery period he didn't advise using a condom catheter for the incontinence. This sure seems like a real problem since I will be going through 8 or more pads a day I'm sure.

As I mentioned above I'm pretty sure I underestimated the procedure and I'm now real concerned about the pain in the recovery period.

Thanks for any comments you wish to share with me. 

dadspet said:

Condom Catheters for Incontinence vs AMS800 procedure?

I've been struggling with complete (75 male) incontinence for several months now and scheduled for an Artificial Urinary Sphincter AMS800 in early April 2017. I've had external beam radiation and seeds for prostate cancer about 2001 and Bladder cancer with BCG treatments in 2015. Currently I'm cancer free but in 2016 a urinary stricture developed and I had to self cath several times a day. This wasn't a pleasant experience but then magically the stricture disappeared and I became incontinent. With the stricture issue several urologists were recommending bladder removal but when I became incontinent my urologist then recommended condom catheters and or use of a clamp. After a lot of trial and error I finally found condom catheters that stayed on and got me free of wet pads. The condom catheters really work with some drawbacks and inconveniences but are clearly a lot better than wet pads (or self cath) . They could be a solution to my incontinence issue but the urologist recommended the AMS800 which seemed like a better solution than even the condom catheters. After reading this board I think have under estimated the AMS800 operation and the associated recover pain, giving me second thoughts on following through with the AMS800.

 

After reading the boards about AMS800 experiences, I'm not sure I found anyone with incontinence who has been using condom catheters and clamps for control before their AMS800 placement.

 

Have I missed something ?

 

If anyone out there has gone through the condom catheters phase then into a AMS800 please share your thoughts on going through with the procedure.

 

My Urologist has said that in the 8 week recovery period he didn't advise using a condom catheter for the incontinence. This sure seems like a real problem since I will be going through 8 or more pads a day I'm sure.

 

As I mentioned above I'm pretty sure I underestimated the procedure and I'm now real concerned about the pain in the recovery period.

 

Thanks for any comments you wish to share with me. 

I have been using condom catheters since soon after DaVinci six months ago, and am now scheduled for the AUS in May.  Pads/briefs/diapers just do not hold enough fluid. I need to change every 30-60 minutes during the day (that slows down at night). It took a while to find which cath's I like best, and now it is all pretty much routine. But I would love to get back to some sort of normal.  My urologist has not mentioned anything about not using condom cath's (CC) during the recovery period. So this is news to me. My uro therapist (kegel coach) said she's only seen one other guy who used CC's. There just is not a lot of info to be found out there.

We have a lot planned during the upcoming months (other cancers/issues) so I don't want any surprises. I am very active on cancer-forums.net but no one on that board has any experience either with CC's or AUS. I find this board (cns.cencer.org) poorly organized and more difficult to navigate, but there is more info here on those topics. My concern is most of the posts here are from more than five years ago. A lot can change in that time.

Anyway, right now my incontinence is holding up salvage radiation for the residual cancer from my RP (T3b w/SVI). The RO says it is better to have the AUS put in before IMRT begins, then that continues every day for two months. So everything revolves around this procedure. Very tight window. I wish you good luck on your procedure next month. I hope all goes well, as I will be right behind you.

dadspet said:

Condom Catheters for Incontinence vs AMS800 procedure?

I've been struggling with complete (75 male) incontinence for several months now and scheduled for an Artificial Urinary Sphincter AMS800 in early April 2017. I've had external beam radiation and seeds for prostate cancer about 2001 and Bladder cancer with BCG treatments in 2015. Currently I'm cancer free but in 2016 a urinary stricture developed and I had to self cath several times a day. This wasn't a pleasant experience but then magically the stricture disappeared and I became incontinent. With the stricture issue several urologists were recommending bladder removal but when I became incontinent my urologist then recommended condom catheters and or use of a clamp. After a lot of trial and error I finally found condom catheters that stayed on and got me free of wet pads. The condom catheters really work with some drawbacks and inconveniences but are clearly a lot better than wet pads (or self cath) . They could be a solution to my incontinence issue but the urologist recommended the AMS800 which seemed like a better solution than even the condom catheters. After reading this board I think have under estimated the AMS800 operation and the associated recover pain, giving me second thoughts on following through with the AMS800.

 

After reading the boards about AMS800 experiences, I'm not sure I found anyone with incontinence who has been using condom catheters and clamps for control before their AMS800 placement.

 

Have I missed something ?

 

If anyone out there has gone through the condom catheters phase then into a AMS800 please share your thoughts on going through with the procedure.

 

My Urologist has said that in the 8 week recovery period he didn't advise using a condom catheter for the incontinence. This sure seems like a real problem since I will be going through 8 or more pads a day I'm sure.

 

As I mentioned above I'm pretty sure I underestimated the procedure and I'm now real concerned about the pain in the recovery period.

 

Thanks for any comments you wish to share with me. 

Dadspet asked "After reading the boards about AMS800 experiences, I'm not sure I found anyone with incontinence who has been using condom catheters and clamps for control before their AMS800 placement. Have I missed something ?  If anyone out there has gone through the condom catheters phase then into a AMS800 please share your thoughts on going through with the procedure.  My Urologist has said that in the 8 week recovery period he didn't advise using a condom catheter for the incontinence. This sure seems like a real problem since I will be going through 8 or more pads a day I'm sure."

(I posted a reply to this a few days ago and got a message that it would be reviewed by a moderator. I have checked every day and it still has not appeared, so I can assume it has disappeared into cyberspace. I will now try to remember what I said that post.)

I have been using condom catheters since my DaVinci RP six months ago. At first I tried pads and briefs but they quickly become soaked and irritate my penis and groin. While shopping online for better pads I was directed to condom caths by an ad. It took a while to figure everything out and find what works best, but by 3 months out had a routine that has worked very well. I try to go without cath for a day or two each week to allow myself to "dry out" and my skin to recover but the wetness from the diapers is definitely the worst. I go thru 8-10 diapers on these cathless days, each weighing around a half pound of urine. I can hold my uring when sitting or laying down and can go all night without getting up to pee, but when on my feet I just leak like a faucet.

I had physical therapy which consisted of kegel training and electro stim and there was some small improvevment, but still I am only about 50% continent. The therapist said she only had 1 or 2 other patients who used CC's. There's not a whole lot of information out there, and as I said, had to figure everything out for myself (but then I am an engineer and do that for a living). I am now considering having the AMS800 AUS surgery and that is how I found your post. First let me wish you good luck with your procedure and recovery, which at this time appears to be next month.

I had G8 prostate cancer and am now T3B with SVI, and was supposed to begin salvage radiation this month, however my RO recommended waiting until I gain further control over my incontinence. He said he has seen improvement up to ten months. I am currently on Lupron to keep the PSA down. I have spoken with several urologists and they say there is NO WAY that my incontinence would improve significantly from where I am now, and recommend that I proceed with the AMS800 so that it can heal and then begin RT as soon as it is activated.

Not one of these doctors - none - ever mentioned not using condom cath's while recovering from the AUS surgery. I am curious if there was any explanation given to you. I am like you in the same boat... 8-10 pads per day and much irritation, or stay with the CC's and hopefully recover normally from the AUS placement.

Again, good luck with your surgery, and please keep in touch.

Since my Dr said no Condom  catheters (or NO clamp for sure) until after the AMS800 is activated  (8 wks in my case due to radiation damage requiring long healing period ) I've been very concerned and again questioned him why not? His answer the first time was he was concerned about backflow ( which I guess is the urine not flowing into the drainage bag, due to a kink or some other issue, and backing up into the surgery areas ?) and then a possible infections. This time he said he didn't want anything to disrupt the healing process and he had a previous patient who used a condom catheter and had to have the AMS800 replaced in a very short period of time before the recovery period was over. This is a major concern of mine and I probably will address this with him again next week as we finalize test results before the procedure the week after.  The major concern in my case has been bladder cancer and reoccurrence so I've just gone thru another cysto and bladder biopsies along with a ct scan and tomorrow a ultra sound of my kidneys and more blood work. I am so sick of all the time I've spent getting tests  but I think I'm at a point if all tests are ok I plan on going thru with it. Not a easy decision for me and I may change my mind before its over. I hope  on updating the BB on my progress. 

dadspet said:

Condom Catheters after AMS800 procedure before activations- 8wk

Since my Dr said no Condom  catheters (or NO clamp for sure) until after the AMS800 is activated  (8 wks in my case due to radiation damage requiring long healing period ) I've been very concerned and again questioned him why not? His answer the first time was he was concerned about backflow ( which I guess is the urine not flowing into the drainage bag, due to a kink or some other issue, and backing up into the surgery areas ?) and then a possible infections. This time he said he didn't want anything to disrupt the healing process and he had a previous patient who used a condom catheter and had to have the AMS800 replaced in a very short period of time before the recovery period was over. This is a major concern of mine and I probably will address this with him again next week as we finalize test results before the procedure the week after.  The major concern in my case has been bladder cancer and reoccurrence so I've just gone thru another cysto and bladder biopsies along with a ct scan and tomorrow a ultra sound of my kidneys and more blood work. I am so sick of all the time I've spent getting tests  but I think I'm at a point if all tests are ok I plan on going thru with it. Not a easy decision for me and I may change my mind before its over. I hope  on updating the BB on my progress. 

Thank you Dadspet for the updated info on the AUS and condom caths. First, let me wish you good luck with your upcoming procedures...  I have relied heavily upon condom cath's since my RP surgery last summer. And now my incontinence is so severe that it has delayed the start of the radiation therapy that originally was to start this month.  Your doctor's concerns sound legitimate, so perhaps I may need to alter my practices a bit after having the AMS800 implanted.  My doctor has advised that the AUS should be implanted before starting radiation, so the healing time (plus additional healing time if any revisions are necessary) will also delay the start of my RT. It sounds like you've been thru quite an ordeal already. Do I understand correctly that you will have the AMS800 implanted in two weeks? You are definitely right, this in NOT an easy decision. There's a lot that can go wrong, and though most men seem to be happy with the outcome, once it's done it's done and we can only hope for a favorable outcome.

dadspet said:

Another Glitch

Planned AUS implant was first week in April but Dr called me yesterday saying cytology showed some concern and now wants Moffit Cancer Center review of cytology prior to additional testing. I guess the bottom line here is that going into an AUS implant (especially when one has External beam radiation + Seeds and BCG infusions)  requires a fair amount of testing to ensure there are no other issues. 

Sorry to hear about the complications and it certainly sounds like you have a lot going on. Good luck with the Moffitt review (that will bring down into my neck of the woods). It looks like quite possibly I may end up getting the AUS before you do!  I see my RO again in two weeks to work out the RT schedule, and the AUS right now is scheduled for mid May... hoping I will be sifficiently healed and able to travel by the end of June and possibly start RT in the fall, or maybe postpone it til early next year, if the Lupron can keep my PSA down.

I know you have a lot more going on, and at our age it's never just one thing. More like you gotta line up the ducks and hope one doesn't fall before its turn and mess up the whole parade.

DianeC926 said:

AMS 800 Artificial Urinary Sphincter

My 88 year old dad decided to do this surgery without confiding in me. Of course the device failed and he is beside himself, what's worse is that he has put a call into the doctor twice now to find out what had happened and what can be done but low and behold, no answer back. My heart breaks first of all that any doctor would do this surgery on an 88 year old man with this kind of risk failure just so he can hold his penis when going to the bathroom a few more years is beyond me, really doc? Needless to say my dad wants it removed as he says its uncomfortable when sitting down but would have lived with this device inside had it worked, I am obviously trying to convince him into leaving it in rather risk going under again, is this wrong of me?

Does anyone know the success rate on this, especially in an 88 year old man? The doctor not calling back has me suspicious as well, would this be considered malpractice? 

I can't say I am happy about this and I am trying to help my dad now in any way I can. I would so appreciate the help if someone has any suggestions on how to further help my dad.

Thanks so much

Diane

Call the doctor, repeatedly. Make a personal visit if you need to. From what I've read, most recipients of this device are happy with the outcome, however there is a 1 in 4 possibility that revision surgery may be necessary. Typically this is to resize or reposition one or more of the components. Actual mechanical faliure does occur but is uncommon. Your father's doctor should stand by his work, in fact, should have advised him of that possibility beforehand. Legal recourse is always a possibility but your court case would likely outlive your father.