Hi,
Been suffering with incontinence for over a year now. I had radical prostatectomy on 3/23/23 followed by 8 weeks of radiation.
Went to urologist specialist and he claims the only option for me is the AMS 800( the so called gold standard). I have to make a decision soon. Can anyone offer any experience with this device? Will my exercise be hampered? Will I feel these components in my body? Does it ever fail?
Thx
Hi Pharm1125,
AMS800 is excellent but some cautions required in my view.
I was totally incontinent post RP in 2015 and had an AMS800 installed in June 2016, so 8 years on and still working.
I don't need pads unless cycling where I can inadvertently put pressure on the perineum and distort the cuffs (plural) which then allows some leakage. I do use a bike saddle with a cutout to minimize this.
Apart from that it doesn't hamper exercise. I ride MTB, do mat or reformer Pilates every day, heli ski and hike with no issues. I also fly long haul internationally 5-6 times per year.
That said, since year 5 I've had some post urination dribble for a minute or so. That just requires some care and a don't rush off mindset. Solid otherwise.
These can fail and when I travel I take a backup kit of a Weisner clamp and some pads.
Erosion of the urethra is the most common long term failure cause and I was advised that a revision operation around year seven was likely without care.
I am not consciously aware of the AMS, if that's what you mean by feel, unless I search it out. Using it is different to what us males are used to. The control device is in the scrotum and I find I have to lift the whole lot beyond the pants zipper to get a stable grip of the pump with one hand and use the other to pump it. That leaves no hands to direct the flow in the initial moments. 😜
Now for the real caveats.
Find a specialist who has done 30+ AMS800s as whilst it is a straight forward procedure the optimal outcome is seemingly easy to f*up. Discuss his/her success and failures. Mine was paranoid about infection control as this is the primary driver of early post op failures.
I also recall being told postop that I have two cuffs installed. Good option.
Excellent explanation from RS265. Hubby had one installed in 2014. It was life changing for him-from total incontinence to control. There is a period of about 6 weeks after the surgery before it can be activated. He has some leakage now 10 years later. He needs a revision, but is not healthy enough for it.
I had the AMS implanted in 2018. Went from 5 large pads a day to one small one at present. Usually I will have a small dribble if I wait to long to go to the bathroom or being impatient after urinating. Still works like a dream, no hassle at all.
Hi,
My concern is about exercise with this device, bending and swimming? Can you feel the device or is it in the way? Does it turn on and off easily? I’m fearful that I really have to urinate, and I can’t open the device? Your input is very valuable and much appreciated.
Hi, normal activities are no problem at all. I don't do bicycling or horseback riding, but apart from that I do not have any restrictions. If I go to the fitness center i use an exercise bike with a normal seat. I guess I could bicycle as well if I bought a cut out seat. I had accidents a couple of times when I sat down on the armrest of a sofa or similar that would press my scrotum, but it has never been a problem. I just have to watch what I am doing. Before one of my worst fears was being on the beach wearing swimming trunks. I had to hurry to get in the water so nobody would notice the wet spot in front of my trunks😅
Had Prostatectomy in Jan 2019. Tried Kegel with no success. Needed 4-6 pads per day. AUS 800 installed in 2021. 1st month waiting to turn on is not pleasant. But after turn-on I was very satisfied. Depending on activity, I am down to 1-2 pads per day depending on activity. Still wanted better control and am scheduled for a smaller cuff installed on Sept 3, 2024 as an out patient procedure. Overall I definitely recommend the AUS 800. Don't have any restrictions and do walk a mile+ playing chuck-it with dogs and workout once per week. Planning to increase workouts next week. The only issue is that to get to the switch I have to sit down and spread legs to get to it properly. Minor issue vs the multiple pads. FWI Tena level 3 pads are GREAT from amazon.
Hi,
May I ask why the 1st month was not pleasant?
I am currently using 2 pads a day. Do you think I will see a significant result? Looking at the device , I worry what happens if u can’t turn the device on, and u really have to pee?
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