My story begins in 2010

Edited , 3 users are following.

I was diagnosed with Prostate Cancer in May of 2010. My Gleason score was 9-10 and my PSA was 5.2. I was 66 years old and was not surprised, however I had no indications that anything was wrong. Urinary frequency was normal and I had a good stream. We opted for total removal of the prostate. I done my Kegals and regained control of urinary functions in about 6 months and done very well until four years later my PSA tripled in 3 months. We waited for the next check-up and it tripled again. The Dr. decided that with such a high Gleason score we had better do a radiation treatment. I done 40 of them in September and October of 2014. The only problem was I did leak a bit when I done heavy lifting or or twisting of my lower body. It was suggested that I might have some control issues after radiation treatments were finished. Wow, was that ever true. I simply had no control for a couple of months. I done the Kegal exercises a lot and saw very little difference for at least 6 months. Best I ever got was from 2-5 large mens Pads until the present. Decided to try the AMS-800 implant. I really looked forward to some relief as I was tired of the irritation and soreness and being wet all the time when working. Being a farmer and a rather active man now I was 75 years old. The hospital could not get me in to do the surgery untio late march. Facing planting and haying season too soon I said, "I cannot do that." We will have to try for next winter. We set up an appointment ritht then for early December of 2019 and the surgery was done. I had very little pain from the surgery, in fact. I toon no pain medice that they sent home with me. The discomfort came later. Jan 23 wat to be the day they activated it & like a school kid counting the days till summer vacation, I counted the days until it would be activated and working for me. Went to the appointment and they tried to activate it and the pain was some of the worst I ever had. It felt like they had my testicles in a pair of pliers or Vice-Grips. Re-scheduled the activation day for 4 weeks later to try again. I was still so sore that I declined to try it again and tolerate more discomfort. Surgery was set to move the pump to a different location in my scrotum and was done. Going on 6 months now since this ordeal started and I still have a level of discomfort that I doubt I can tolerate activation yet. I am normally a rather optomistic person, but I am getting a bit discouraged about this thing I have started. What have I done wrong? I am sure this is not normal and I understand that most men get along very well at activation at 6 weeks. I am still looking forward to the life changing thing taking place and I can live a more normal life. I do not want to give up, but I would sure like to see some positive results and less discomfort from having sore testicles from rubbing on the pump. Where do I go from this point. Has anyone else had these issues and if so, what did you do? I also have one more question. When it is activated and the pump is activated to release the cuff, How long does it take to get urine flow? My understanding is that you hold the pump with one hand and pump with the other. If I understand this correctly and the flow does come fast, How do you aim it as I do not have 3 hands??? Any help or shared issues would be deeply appreciated.

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  • Posted

    So sorry for your challenges. I've had the AMS-800 implant for about 2 years and it's been life changing. I didn't have any problems with activation though the pressure point where I squeezed the pump was a little tender at the beginning but it's gotten better with time.

    In regards to your questions:

    I can operate the pump with one hand which leaves the other to aim. (I locate the pump and then use my thumb and finger to give it a couple of squeezes.) I can urinate standing up, like at a FB game at the urinal, but find it's easier if I sit down. (Just personal preference.)

    As far as when the stream starts it's pretty quick for me, maybe not immediate but 1-2 seconds.

    Hope this helps, good luck, and let me know if you have more questions.

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    • Posted

      Scott 6749 I certainly appreciate your response as it gives me encouragement to keep on trying. I just hope I can get on top of this discomfort issue. Prostate Cancer is a real issue in our family. To be born a male into this family, "It is not a question of whether', but a question of when." That is very encouraging to me that you can pump it up with one hand and still have the other hand available to control things and hit the target..

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    • Posted

      I paid more attention the last time I urinated and I hold the pump steady with might right index finger and squeeze the pump, two squeezes, with my right middle finger and thumb. After I'm done I dab the end of my penis with some TP as sometimes there's a drip.

      I hope everything works out, it's been great for me. Maybe not back 100% to how I was before my surgery but pretty close, about 98%. My best example is; I'm a craft beer lover so to be able to attend a beer festival and not have to search for the nearest bathroom and go all the time is amazing. The frequency I have to urinate is really just a function of bladder capacity, just like it was before.

      I wear a really light pad, more of shield. It's very rare but sometimes I'll leak a few drops if I sit on the edge of a chair and some bike seats can be problematic. I leak a few drops maybe once a month.

      Good luck.

      (An email notification pops up when new messages are posted so if you have more questions let me know.)

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    • Posted

      Thank You for your response. I do know a guy that sits down wherever it is possible. My Father never had an AMS800 implant But, it worked better for him to sit down. I have tried it several times and I apparently do not drain out completely because when I get up I get enough drops or squirts to re-wet myself again. That does not gain very much comfort when that happens. I will keep on trying and waiting for things to get better. Today my right testicle is hurting some & when I bend over or reach down to the ground to pick up something, I get a jab of pain that goes half way to my navel. I think I know how a pig feels when he is casterated.

      !!!!!!!!!!!!!!!!!!!

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  • Posted

    I'm sorry that you are having this issue. I've had my AMS-800 for about 2.5 years now, and the activation was painless. I have had a few times when my clothing apparently pushes one of the gonads up to a point that when I move my leg, the upper hard portion must press against the gonad and there's a transient sharp pain. My pump is locate a bit high on the right side, above the gonads, so there is no interaction when walking or standing.

    For the turn on the AUS, I went into the office and the urologist instructed me to stand and lower my pants and shorts. The activation only required one quick hard squeeze of the bulb by the urologist. That released the locking slide located near the top, allowing the fluid to flow from the reservoir to fill the cuff. When it was done, the urologist who had gone to one knee to operate the pump stood up, and I asked, "Is that it?" She smiled and said, "Yes, that's it."

    If the AUS is ever locked open with insufficient fluid left in the bulb, it's necessary to use the upper slide, which is hard plastic, to unlock the device, I imagine that would probably be a bit more uncomfortable than what I experienced.

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    • Posted

      I Certainly appreciate your response and it gives me some encouragement to keep on trying. It has been 6 months now and I am still sore. They redone the pump to a higher position on me and it still rubs my testicles when I walk or do any other activity. I mowed hay all afternoon today and it is quite sore now and prior to the surgery, I could drive the tractor all day long with no pain other than the frustrations of leaking all over myself. I have changed many a pads in the field since 2010 and many more since the radiation treatments in 2014. I am ready to see this thing work, but I am sore enough this evening that I am not sure I could operate it this evening i f it were actually activated. I believe there is a problem somewhere that something is wrong.

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