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Medical Forum / Diseases and Disorders / Prostate Cancer / December 2006It's official. I am a failure!
My leaking after the AMS 800 implant last year that is. Saw the uro yesterday and he said that I am in the 5% "failure" group. The problem has to do with the size of my urethra. He used the smallest cuff that AMS makes for the artificial sphincter, and it is too large for my undersized pipe. That is the bad news. Now for the good news (yes, there is good news). There are a bunch of alternatives, some of which are not suitable, but I am going to list them here hopefully for the benefit of the next guy that has to deal with the incontinence. Just a list first. 1) AMS makes two different control devices that have different pressures. There is one available with greater pressure that could improve the effectiveness of the device. 2) Add a second cuff (the thing that goes around the urethra) in tandem to the first one. 3) The shunt procedure, where tissues are added around the urethra and the cuff then put around that. 4) Wait for AMS to manufacture a small cuff, which they are currently evaluating. 5) Sorry that I forget the name, but this is where the cuff is put further down from the bladder and instead of being put around the urethra it is put around penile tissues where the urethra passes through. 6) New and still under study is a variation on the sling procedure. If you look at the AMS website one alternative listed is the "InVance Sling procedure". This is the "ExVance Sling procedure". So now for more detail. The higher pressure device is seldom used anymore because it causes faster erosion of the urethra. So forget that at least for now. A second cuff is not practical in my case because the urethra gets smaller as it gets further down from the bladder. The one in now is too big, so adding another at a point where the tube is smaller will not help any. The shunt procedure is still new enough that they do not know how long the implanted tissues will survive. Not ruled out for sure, but I would want to go with something that has more certainty. Wait for AMS... forget it. I want help NOW! Number 5 is what I chose. This is a new procedure that was developed by my doctor, Dr. George Webster at Duke. This is more or less like the regular operation, but done further down and uses other tissues for the compression. However, this is not for all men because this has the potential for causing erectile problems. I am totally impotent, so that does not matter for me. This procedure can be done either before or after a AMS 700 penile implant, so that is not precluded. I forget exactly how many of these he has done so far, I think he has done 40 and in total there have been about 80 done nationally, but don't quote me on that because I may have that wrong. In any case, so far the procedure has shown success. Number six is a possibility, but there has to be some tests first to see if I am a candidate. This procedure was developed in Europe, I think he said Switzerland, and he has done six so far and all six men are dry. DRY! God does that sound good! In my case the AMS 800 would be left in and the sling would be more to reduce pressure on the cuff. So that is all I know. I hope this can be of some help to someone out there. One advantage of going to an academic medical center is getting access to the latest science. Of course, that has risks because they are still learning, the next six guys getting the new procedure may all still leak, but this one has been done for a couple years in Europe and appears to be a viable alternative. Good luck to all and here is hoping for a dry 2007! David S. > Good luck to all and here is hoping for a dry 2007! > > David S. David, how wet are you? I suspect I'll never dry out, especially during unstructured physical effort, but so far mine doesn't warrant what I gather is a slew of crude, Rube Goldberg band-aids fraught with various risks. My uro keeps asking me whether I'm satisfied with my (im)potence and (in)continence, and seems surprised at my repeated answer: "No. But it beats the alternatives so far.") I.P. Hello I.P.: Right after the AMS device was activated I was able to get by using panty liner type pads. Then I started to have accidents so I eventually went back to the Depends Guards. I use two a day normally, and am observing that they are more soiled as time goes by. On weekends, when I am more active around the house or in the yard I will go through three pads. I used to be able to sleep without a pad too, but not any longer. I seem to leak all the time for some reason. I was supposed to go back to the uro last April and canceled that appointment because I really did not want more surgery, so I did not see any point to have him tell me that I was leaking too much and I knew the only alternative was cutting again. So life went on, but the leaking got worse. He told me that was because the urethra erodes some from the pressure of the cuff, so it would be normal for there to be more leakage in my case because the shrinking urethra meant that the already too large cuff could not do the job properly. In April my thinking was "I can live with this and I do not want anymore surgery". Today I am tired of the leaking and find the message I heard the other day encouraging, so I am willing to take another shot at it. I guess it just gets down to a personal decision, like surgery vs. radiation. Hope you have a nice holiday I.P. Wet, rainy, and about 60 degrees here today. David S. > > Good luck to all and here is hoping for a dry 2007! > > [quoted text clipped - 8 lines] > > I.P. > Hello I.P.: > Right after the AMS device was activated I was able to get by using [quoted text clipped - 17 lines] > at it. I guess it just gets down to a personal decision, like surgery > vs. radiation. Probably so. My uro and friends sympathize with my pads (or several drowned diapers a day when playing like a litter of puppies), but it sounds like I'm drier now than you when you had to take further measures. > Hope you have a nice holiday I.P. Wet, rainy, and about 60 degrees > here today. Pacific NW winters, out in the desert where I am, are more or less 30s days, 30-ish nights, with gloom and doom about 300 feet over our heads most of the time. The occasional clear days just mean colder nights, well worth it as long as it doesn't mean icy roads. Here in eastern Washington, our annual precipitation is 6 inches . . . 5 post-op. I.P. > My leaking after the AMS 800 implant last year that is. Saw the uro > yesterday and he said that I am in the 5% "failure" group. The problem > has to do with the size of my urethra. He used the smallest cuff that > AMS makes for the artificial sphincter, and it is too large for my > undersized pipe. That is the bad news. I'm sorry to hear that Dave. It looks like you may have beaten the bastard (still <0.1?), but damn!! You just never got that peeing thing under control. I wish you better luck with the next procedure. Steve....what was the name of the pharmacist who told us he had the "sling procedure" done and that it had really solved his leakage problem??? This had to be 2-3 years ago roughly. I remember it well because it caused ME to start asking questions of Ron's urologist and I found out that there was a procedure for women like myself with stress incontinence called TVT. I did look into it but what with the **** hitting the fan with Ron, I put it off. Cheers.....Heather >> My leaking after the AMS 800 implant last year that is. Saw the uro >> yesterday and he said that I am in the 5% "failure" group. The [quoted text clipped - 7 lines] > bastard (still <0.1?), but damn!! You just never got that peeing > thing under control. I wish you better luck with the next procedure. > Steve....what was the name of the pharmacist who told us he had the > "sling procedure" done and that it had really solved his leakage > problem??? This had to be 2-3 years ago roughly. Damn, Heather. You know I'm on Lupron! I remember a couple of pharmacists. One was Joisey and another was a Jerry Rumplekin or something like that. I cannot find the latter in my spreadsheet, so I am obviously misspelling it. Joisey hasn't been around in Wait a minute!! It was Joisey. He was at joisey@mindspring.com But, like I almost said, I haven't see him here in many months. His cancer had metastasized into his bones and he was going to a cancer treatment center. >> Steve....what was the name of the pharmacist who told us he had the >> "sling procedure" done and that it had really solved his leakage >> problem??? This had to be 2-3 years ago roughly. > > Damn, Heather. You know I'm on Lupron! Yeah, yeah yeah.......that just means I can turn my back on you in a dark room and not be afraid I would get harrassed. ROFL!! Seriously, I think it was Jerry. I will do a Google Archive search I guess and see. But he was very happy with his sling procedure because as a pharmacist he was on his feet all day. And it worked. XX Heather > I remember a couple of pharmacists. One was Joisey and another was a > Jerry Rumplekin or something like that. I cannot find the latter in [quoted text clipped - 6 lines] > cancer had metastasized into his bones and he was going to a cancer > treatment center. >>> Steve....what was the name of the pharmacist who told us he had the >>> "sling procedure" done and that it had really solved his leakage >>> problem??? This had to be 2-3 years ago roughly. > Seriously, I think it was Jerry. I will do a Google Archive search I > guess and see. But he was very happy with his sling procedure because as > a pharmacist he was on his feet all day. And it worked. I found him. I was close.... more or less. jermyrauto@verizon.net gerald rubackin Rubackin, Gerald (Jerry) But, I still think it was Joisey. Heather: Don't forget that the sling procedure I am talking about is something new. It is somehow different from the procedure that they have been doing for years. The new one was just FDA approved, but is still new enough that there are not many doc's in this country that are doing it. I think my doctor said he had done only six so far. All have been successful, but.... Now the new procedure was developed in Europe and has been done over there for something over a year. When I saw my doctor and was being evaluated for the AMS 800 he told me about this procedure then. He had just returned from Europe after being invited to come and observe. I guess that is why he is the principal investigator for the study here. What I was told about the old sling procedure is that it was effective for men with a lot less leakage than what I had. The only thing, at the time, that was available to me was the AMS 800. Good to hear from you again Healther. It has been a long time. I don't think my wife is jealous of you anymore, but to be safe I will not mention that I heard from you. :))) Best wishes for the holiday season and for a happy healthy new year. David > Steve....what was the name of the pharmacist who told us he had the > "sling procedure" done and that it had really solved his leakage [quoted text clipped - 18 lines] > > bastard (still <0.1?), but damn!! You just never got that peeing > > thing under control. I wish you better luck with the next procedure. Hi Steve: When the doc was talking to me at first I was getting pessimistic because I thought he was leading up to telling me that there was not anything he could do for me. Then he started talking about the new approaches and I saw that there was some hope. I guess that it was it boils down to, "hope". I feel good about the visit on Wednesday and am very glad I went. I am hoping that this new sling procedure works out. If it does that could mean really good news for a lot of guys. And no tubes. No pumps. Nothing artificial so the man can urinate naturally. In my case the AMS will be left in, so the sling will be primarily for the purpose of assisting the implant to do its job more effectively. But who knows? If this works as good as the initial results indicate, it could mean that the AMS could just be deactivated, that just involves pushing a button on the side of the control unit, and let the sling to all the work. We will see. They may not be able to do the sling for me, so the other new procedure will be what he does. Hope you have a great holiday season. David > > My leaking after the AMS 800 implant last year that is. Saw the uro > > yesterday and he said that I am in the 5% "failure" group. The problem [quoted text clipped - 5 lines] > (still <0.1?), but damn!! You just never got that peeing thing under > control. I wish you better luck with the next procedure. David S., so sorry to have the word "failure" be made official. As you know, I'm also a dripper and though I can live with the pads, the constant moisture in that area is creating some issues with rashes and irritation which are becoming an ongoing problem. Anything you can offer from your experience and research will be much appreciated by myself and the rest of us leakers. By the way, can your surgery be reversed? If the AMS 800 is removed, would you be back to where you were before or worse off? Could you then have another treatment such as the sling installed? Good luck to you, Dave Perry > My leaking after the AMS 800 implant last year that is. Saw the uro > yesterday and he said that I am in the 5% "failure" group. The problem [quoted text clipped - 73 lines] > > David S. Hi Dave: Yes, the AMS can be removed and they told me that I would simply return to where I was before the implant. There would be no additional side effects from having had the device. However, in my case I was filling up a Depends Guard in about two hours and that was at work just sitting at the desk. Remember that when I had the AMS 800 implanted they also did a bladder neck resection. Prior to that my leaking was more or less like it is now, meaning about three Depends Guards a day. After the bladder neck resection, but before activating the AMS device, I was leaking badly. It was six weeks before they activated the AMS 800, and I saw no sign of that improving. I will continue to post as I learn more. That new sling procedure sounded real promising, but in this country it is very new and you know what that means. I do not know how many doctors are doing that procedure in the U.S. at this point, but my doc told me they have been doing it in Europe for some time now. Good to hear from you Dave. I hope you have a very enjoyable holiday season. Thank you. David S. > David S., so sorry to have the word "failure" be made official. As you > know, I'm also a dripper and though I can live with the pads, the [quoted text clipped - 9 lines] > Good luck to you, > Dave Perry Also sorry to hear of your misfortune, David S. Undoubtedly you will become dry thru a new procedure, in time. I like the idea of the new sling procedures. For general info, my AMS 800 implant one year ago was (an almost complete) success, done by Dr. Laurence Levine at Rush in Chicago. As time goes by I have less and less wetness (it used to require two small pads/day, like the regular Poise pads, but even then they wouldn't have much wetness). Now I could easily get by on one of these a day. This is because my bladder muscles seem to be adjusting to the new environ - basically, the AMS cuff around the urethra doesn't have a lot of pressure, so that if my bladder muscles get excited my pad gets wetted - they get less excited over things as time goes on. I have never had to disengage the device, like at night, to avoid erosion. The only other problem I have is that I can't sit forward and then stand up, because the cuff is located in a position where external pressure (from sitting) can cause the cuff to deflate (i.e., I better not stand up right after sitting forward). I have also (naturally) learned how to sit, etc. to avoid this problem. I have also learned not to make any sudden moves, as it will cause the bladder muscles to engage and squirt some pee out. I wear a panty liner at night. I need to wear a Poise regular (small pad) at the gym because I have a (very) little leaking from the physical exertion/activity. I can't feel the AMS 800 inside me and the pump works beautifully - it only takes two or three short jabs with one hand, and it is always easy to grasp in the scrotum, located right under Peter. > I need > to wear a Poise regular (small pad) at the gym because I have a (very) > little leaking from the physical exertion/activity. I, too, stay fairly dry at the gym and in yardwork, yet still flow like your average broken faucet during sports. I don't understand that, as I'm not consciously concentrating on sphincter control at the gym or in the yard. I.P. Detrol may help that, since your bladder muscles are probably (over)activating with sports; Detrol nicely allevites this excessive response of the bladder muscles. |
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