I had RALP 13 months ago, do Kegels diligently under supervsion of PT, and monitor my fluid intake. I have overt incontinence that typically results in 3-4 pads per day with fairly substantial leakage although typically bladder does not completely empty unless I do something like running. The leakage quantity has remained fairly constant for the past 6 months so I am not expecting much more improvement. I am a very active person so this is a major QOL issue. I will be meeting with a reconstructive urologist in the near future to discuss slings, AUS, but would like to know if anyone has experience with other non-invasive treatments such as penile clamps. Some urologists seem to recommend these while others do not. Appreciate any information, advice, experience.
Experience with penile clamp or other... - Prostate Cancer N...
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I’m in your shoes. It’s been 13 months and I still am at 2-3 pads. Tried the clamp and found it very uncomfortable. Presently looking into a procedure called Pro-Act therapy which is relatively new and much simpler than the AUS. I’m seeing a Dr in Florida next month, may want to check it out. Heard nothing good about the sling. Good luck !
Thanks - please keep me posted and I will do the same after I meet with urologist. The key thing I am looking for from the urologist is to get a thorough evaluation so that we have a better sense of what the real issue and then treat that issue. I know there are a few tests they can run in addition to patient-provided data. Good luck to you as well.
I used a Johnson J-clamp intermittently. It's not made any more. It worked pretty well.
The problem with any clamp, for long-term use, is that it reduces blood flow. I set a 90-minute limit for myself.
Reading these forums, I see good reports for AUS, not-so-good reports for slings.
Thanks Charles. Men in my PCa support group also report good results with AUS. My concerns are a) having something mechanical inside my body and b) ability of any device to withstand running - I have been running for nearly 40 years and there are never any studies done with how various medical procedures (including RALP, AUS) withstand running.
My husband had some leakage since his prostrate removal in 2015 and then radiation in 2016 but recently on a holiday to Paris he developed flu with severe coughing and suddenly became incontinent. Fortunately, our specialist in Sydney sent a referral to a prostrate specialist in Paris who saw my husband and diagnosed sphincter damage due to the normal factors (prostrate removal and radiation) but also the coughing.
In order to manage the rest of the holiday and fly the 23 hours home the specialist provided a penile clamp that cost about 100 euro. It works very well for short periods of time up to 4 hours and although not perfect, but definitely my husband is positive about using it if we are going somewhere special. It's certainly not what you'd want to have to use all day every day though the specialist in Paris said many men wear them at night. For us it's not going to be a long term solution as the problem has not abated. We are seeing a specialist in early December to discuss an artificial sphincter (think they are called AUS 800 or similar in the States). Although around for some time these are still considered the gold standard treatment for severe incontinence.
Some members of this site whom I communicate with have told me that they have had an artificial sphincter for many years and it does improve QOL significantly.
I used clamp on and off for about a year before I had sling surgery. It was ok in that it did the job but uncomfortable at times. The info about it said as the pressure was at top and bottom blood flow was not affected too badly.
The sling is ok but not great ... I have written about it elsewhere. Sometimes I wish I'd done the AUS but really liked the non mechanical minimally invasive solution and wanted to be sure I could cycle.
With the sling I have a much reduced flow and often an irritation which makes me want to go more often, and some difficulty fully emptying. Also occasional minor leakage if urethra not emptied properly. But on balance better than the 1-2 pads a day.
Great feedback - thank you. I too am a cyclist in addition to being a runner so have reservations about AUS although it is the gold standard. There seems to be a number of different clamp designs, some claim to be a bit more comfortable. I'd want to discuss further with urologist. I will investigate Pro Act therapy - FDA approved, perhaps better than sling, but who knows - not a ton of long-term research available. I wish you the best of health.
I use the wiesner penile clamp and have for about a year. I still use a pad "just in case" but you have to make sure you release it periodically . I don't wear it to bed.