Reason for my continued incontinence: "Stricture"

Bump.

This is still a good thread regarding AUS. 

I have had mine for about 14 months (oops.  It's 14 weeks, not months--Gene214) and it still works very, very good.  Gene214

Yes, it is good that this thread was bumped up again. Pete had the stricture problem with lots of problems and total incontinence. Because of this site, and the good words of Gene, Berb, and KW....Pete had the AUS installed and we are waiting activation Oct 28....He can't wait. He was just about at the end of his rope being wet all the time and also in terrible hip pain. Changing the diapers and the pads constantly day in and day out for two years has taken a huge tole on both of us.... I will let you know of the activation outcome. Please think good thoughts for him...Thanks very much. Diane

Hi all, I've been absent for awhile.

Jerryv, thanks for the suggestion about Afex. I tried that system, and still use it from time to time, but it leaked on me a couple of times and I found that very disconcerting. So I am sticking with the pads and the penis clamp.

I got a fairly comfortable clamp, the "Dribblestopper" I think it's called. It's plastic, so it doesn't set off the alarm on the xray machine at the airport. And I am using the Serenity Male Guards, which are expensive, but comfortable, and less likely to leak than anything else that I have tried, mainly due to their ergonomically correct shape I believe.

So, I had the contigen injection in August. My current urologist said that he hoped that it would bulk up my sphincter enough to get it to close effectively. He believes that the surgeon who did my prostatectomy removed too much sphincter tissue and that's what my problem is.

The injection improved my situation slightly, but not substantially. I am using maybe one or two less pads on average per day, and my retention when I am sitting seems slightly better. He recently called me and told me he has performed a few male sling procedures using a new type of sling (I forget what it's called) and that he thinks it would work for me.

At this point, I am still pretty gun shy about any more operations. None have really worked for me so far, and the sling and the artificial sphincter are many times more invasive, more complex, and more risky than what I have been through already. I am having a tough time convincing myself that this is what I should do.

One thing for sure. If I decide to go that route, I want to talk to several surgeons who are "experts" on the procedure. My current uro doc has done several slings and a very few sphincters. I visited a uro surgeon at NYU who has done hundreds of the sling and the sphincter. I want to talk to at least two or three more who are at his level before I select a doc.

If any of you know of a doc who specializes in these procedures and who has done many of them, please get in touch with me and give me their names. I don't mind travelling to find the right guy, although I would like to find somebody in the area around Philly or New York.

thanks

Jefnef, I know you've been around enough to know that experience in these surgeries really do matter.  The doc KW and I have used is here in Dallas, and he's done hundreds.  I don't remember where you live, but wherever, you will finds both the very inexperienced and (if you are close to a large city) the very experienced.  So you can take your time and check these guys out.

Gene214

Oh and BTW, the contigen injection seems to have lost it's effectiveness now, a year later.

Jenef, I did have to have a balloon dilation done this pass March for BNC which cleared that issue and then on Aug 28 I had an AUS implant done I will be honest it is not a pleasant experience this past Monday Oct 12 the AUS was activated. the past 2 days since then has been a god send to me I haven not had a pad on for a day and a half I was doing 3 - 4 pads a day prior

If your are anywhere near Dallas TX Dr Morey at UTsouthwestern specialize in post surgery problems I can not say how impressed I am with him and the AUS at this point the best thing ever I feel normal again

webstergl,

I did consider the AUS and sling as well. I researched it extensively, and visited several doctors. I had a session with the doctor who pioneered the procedure in NYC, Dr. Blaivas. He has probably done as many as anyone.

He was very straightforward with me and described all of the risks. He said that the AUS treatment was the "Gold Standard" for incontinence. But he also told me that many who get the AUS still wear a pad. !!!! Ok, is that going to be a lifestyle change for me if I have the AUS and still wear a pad?

I am not so sure. I am glad you are happy with the results. I am very dissatisifed with my prostatectomy results from a surgeon who many hail as one of the best. I use a clamp and the pads now and I have not wet my pants in over a year. My big fear is that I decide to get an AUS, and like my prostatectomy, the results are less than 100%.

My study of the procedure indicated that there is a significant percentage of patients who do not achieve a dry state, that there are a significant number of patients who have other issues, infection, pain, etc, that lead to having the device removed, and Dr. Blaivas also indicated that the expected life of the device is only ten years-- that means you are looking at another surgery down the road if you are young, or multiple surgeries.

So, at this point I'm waiting and dealing with my condition. I am risk averse. I can get to Dallas easily enough if I decide to go that route, and I'm sure there are equally good docs in my part of the country.

I'm glad you are happy with your situation. Count your blessings.