AMS 800 artificial urinary sphincter

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Comments

  • bwk1414
    bwk1414 Member Posts: 2
    cancerjhw said:

    Had the AMS 800 sphincter at VA with no problems

    After having my prostate removed there was some cancer left, so had to have 40 radiation treatments. I had no pain or other issues with the radiation, but the surgery left me with incontinence which is very difficult to live with! This nightmare started about three years ago (2014) when the VA gave me some PSA tests. It takes a few of these to be sure of cancer, plus a biopsy, etc. I'll just say in closing that all is apparently well now (2017). I found a great product that really helped my leakage called MEN'S LIBERTY. It's an EXTERNAL catheter with a small urine bag and attaches to the penis with a special adhesive. The VA pays for this (about $300 per month). Regular insurance should also cover this for non-military personnel. Oddly, insurance (Medicaid in my case) doesn't pay for pads or diapers, but they do cover MEN'S LIBERTY! I used this great product for about 6 months until recently when I had an artificial sphincter operation using the AMS 800 at the VA. The operation takes only a couple of hours, and I stayed overnight for one night. Four weeks later they turned on the device, and I am now getting used to it. There was only moderate pain for a couple of days, and then it all went away! I hope my little story helps those considering the various options. Good luck!

    thanks

    it does help...i am going in april 23rd for it....have spent a lot of money on depends and pads!

  • Harrymueller
    Harrymueller Member Posts: 2
    edited June 2018 #323
    Pump position

    I had my aus installed 5 weeks ago and will be activated next Wednesday.  The pump seems to be sitting high in the scrotum. Higher than after surgery. Is this a problem and had anyone else have this happen?

    Hi

  • tpelle
    tpelle Member Posts: 184

    Pump position

    I had my aus installed 5 weeks ago and will be activated next Wednesday.  The pump seems to be sitting high in the scrotum. Higher than after surgery. Is this a problem and had anyone else have this happen?

    Hi

    Pump Position

    On my first AUS the pump was placed low in the scrotum and that location worked well.  On my second AUS the surgeon placed the pump very high on the right side.  I told her "that won't work" but she told me to tug it down once a day.  The entire pump outline is visable or feelable.  I like this better as the pump is essentially fixed in place, easily found and manipulated.  Hope this helps.

  • Harrymueller
    Harrymueller Member Posts: 2
    edited June 2018 #325
    Activated

     got activated today. Because it was high it was painful activating.  So far today it works

  • Dino_F
    Dino_F Member Posts: 16 Member

    Activated

     got activated today. Because it was high it was painful activating.  So far today it works

    Pump position

    I had my AUS implanted one week ago.  Today was the first time that the soreness and tenderness of my scrotum had diminished enough for me to even attempt to feel around for the pump.  Right now it located very low on the right side and it is turned posteriorly toward the back of the scrotum.  If it stays in that location I would require an awkward two-handed manuever to stabilize and squeeze the pump.  I still have quite a bit of swelling down there and I realize that things will tighten up over the next few weeks.  My surgeon said there would be no need to tug the pump downward during my recovery as others here have mentioned (I asked twice to make sure.)  Will healing eventually lock the pump in a permanent position in the scrotum? Can anyone offer advice on rearranging the angle of the pump during healing so it will be easier for me to locate and squeeze down the line?  

  • tpelle
    tpelle Member Posts: 184
    Dino_F said:

    Pump position

    I had my AUS implanted one week ago.  Today was the first time that the soreness and tenderness of my scrotum had diminished enough for me to even attempt to feel around for the pump.  Right now it located very low on the right side and it is turned posteriorly toward the back of the scrotum.  If it stays in that location I would require an awkward two-handed manuever to stabilize and squeeze the pump.  I still have quite a bit of swelling down there and I realize that things will tighten up over the next few weeks.  My surgeon said there would be no need to tug the pump downward during my recovery as others here have mentioned (I asked twice to make sure.)  Will healing eventually lock the pump in a permanent position in the scrotum? Can anyone offer advice on rearranging the angle of the pump during healing so it will be easier for me to locate and squeeze down the line?  

    Pump Position

    Dino:  My first and second pumps both were NOT locked in a fixed position after healing.  I've had to use both hands (fingers) in both cases to grasp and manipulate the pump.  This gets a little tricky because you also have to "point" your member to get the flow into the toilet or urinal and not down your leg.  But, it will be managable regardless of the orientation of the pump.  The biggest concern is worrying about the pump operation while waiting for the activation date.  It will all work out, trust me!  tpelle

  • RobLee
    RobLee Member Posts: 269 Member
    Dino_F said:

    Pump position

    I had my AUS implanted one week ago.  Today was the first time that the soreness and tenderness of my scrotum had diminished enough for me to even attempt to feel around for the pump.  Right now it located very low on the right side and it is turned posteriorly toward the back of the scrotum.  If it stays in that location I would require an awkward two-handed manuever to stabilize and squeeze the pump.  I still have quite a bit of swelling down there and I realize that things will tighten up over the next few weeks.  My surgeon said there would be no need to tug the pump downward during my recovery as others here have mentioned (I asked twice to make sure.)  Will healing eventually lock the pump in a permanent position in the scrotum? Can anyone offer advice on rearranging the angle of the pump during healing so it will be easier for me to locate and squeeze down the line?  

    Two handed operation

    It definitely takes two hands to operate the pump - one to stabilize it by pinching the top where the tubes emerge, and another to squeeze the tip of the pump.  And as mentioned, AIM your stream at the same time.  Usually mine squirts out immediately.  It takes a while to learn how to coordinate everything properly.

  • Dino_F
    Dino_F Member Posts: 16 Member
    John A said:

    Flying with AMS 800

    I'm in the consideration stage and have an appointment next month to have a bladder capacity test. I had brachytherapy (radioactive pellets) about 10 years ago and remission ended in early 2014. The radical prostatectomy was highly problematic because of the prior radiation searing parts of the surrounding tissue to the prostate. Consequently I had some complications after surgery that lead to two more surgeris to open up the neck of the bladder. I had multiple UTI's and once my bladder closed up completely. The surgery to repair that has left me with no control at all.

    This forum has been very helpful in my decision making process. Most of my questions have been answered. 

    One small question remains. I fly occasionaly and, since the AMD 800 relies on pressure to operate, I wonder if the cabin pressure at altitude has any effect on the device.

    Flying with AMS 800

    Next week I will be taking my first flight with my AMS 800 implant.  I am curious to know if the implant ever creates problems when passing through a metal detector or full body scanner.  Please let me know your experiences.

  • RobLee
    RobLee Member Posts: 269 Member
    Dino_F said:

    Flying with AMS 800

    Next week I will be taking my first flight with my AMS 800 implant.  I am curious to know if the implant ever creates problems when passing through a metal detector or full body scanner.  Please let me know your experiences.

    Only once. The full body

    Only once. The full body scanner detected something unusual in my groin and they pulled me aside for additional screening, but no strip search, and they did not seem even interested in my explanation  No problems ever with metal detectors. 

  • progolf
    progolf Member Posts: 12
    cancerjhw said:

    Had the AMS 800 sphincter at VA with no problems

    After having my prostate removed there was some cancer left, so had to have 40 radiation treatments. I had no pain or other issues with the radiation, but the surgery left me with incontinence which is very difficult to live with! This nightmare started about three years ago (2014) when the VA gave me some PSA tests. It takes a few of these to be sure of cancer, plus a biopsy, etc. I'll just say in closing that all is apparently well now (2017). I found a great product that really helped my leakage called MEN'S LIBERTY. It's an EXTERNAL catheter with a small urine bag and attaches to the penis with a special adhesive. The VA pays for this (about $300 per month). Regular insurance should also cover this for non-military personnel. Oddly, insurance (Medicaid in my case) doesn't pay for pads or diapers, but they do cover MEN'S LIBERTY! I used this great product for about 6 months until recently when I had an artificial sphincter operation using the AMS 800 at the VA. The operation takes only a couple of hours, and I stayed overnight for one night. Four weeks later they turned on the device, and I am now getting used to it. There was only moderate pain for a couple of days, and then it all went away! I hope my little story helps those considering the various options. Good luck!

    AMS 800

    I know it's after the fact but you could have gotten the pads and underwear from the VA. I get them now. I am thinking about the AMS because the leakage is getting real bad. I'm grateful for this website because all the comments are very helpful for my decision process.

  • RobLee
    RobLee Member Posts: 269 Member
    progolf said:

    AMS 800

    I know it's after the fact but you could have gotten the pads and underwear from the VA. I get them now. I am thinking about the AMS because the leakage is getting real bad. I'm grateful for this website because all the comments are very helpful for my decision process.

    Pads and underwear from the VA

    It is my understanding that they will provide what they have, which is not necessarily what you prefer to use. I looked into getting my prescriptions drugs from the VA but they only had cheap substituses which are in the same drug class. For example, the only PPI they stock is the less effective omeprazole and do not supply the more effective lansoprazole.

    I have my annual VA physical next Monday and will ask the doc about getting pads. I assume they will be bulky white ones that bulge in your pants and are noisy when you walk.

  • addison10
    addison10 Member Posts: 6 Member

    AMS800 installed Jan 21, 2022. Out paitent . 2 oxycodone. Nothing since. Sharp pain at incision when rising/laughing. Antibiotics for 7 days starting 3 days bef. surg. Activation date Mar 1, 2022. RP Mar 2013 after pc spread outside prostate while on active surveillance. Radiation 2015 after ultra began to rise. No evidence since 2015. Runner/hiker. Use 2-3 shields. Embarrassing and disabling for work/travel/sex/relationship. Thank you to all that post and expose themselves. Helps.

    Bob

  • Tico14
    Tico14 Member Posts: 21 Member

    Rob, Just ask the VA for the type/brand of "diaper" you want. They'll probably comply. The first brand they sent me were ridiculous and I told them I couldn't wear them and told them what I had been purchasing on my own. They were actually great about it and have sent me what I preferred ever since. Good luck.

  • RobLee
    RobLee Member Posts: 269 Member

    Thanks. My VA doc asked if I wanted them to supply pads and I said no thanks, I buy my own. I order TENA online and it's around $50 for a year's supply. I can live with that, especially since I have to pay a co-pay with the VA.

  • Tico14
    Tico14 Member Posts: 21 Member

    I was buying diapers for several years until I realized that I got the PCa from the military and some orange stuff floating around, so the VA could supply them. Why should I go broke(er)? They've been real good about it too. They sent me something at first I couldn't use and asked for what I had been using and they've been sending them ever since no questions asked. Can't use the pads and am not a candidate for the AUS. Grass still looks green so I'm good.

  • boltar22
    boltar22 Member Posts: 4 Member

    Anyone have problems with the control not where the surgeon intended it to be?

    Went in at the 6 week deadline for activation and the Urologist after several minutes of "fondling" my package declared that I would have to come back a week later and he would manipulate it to move it in position. After several minutes of painful manipulation, he declared that I would need another visit in 2 weeks and I should try moving it myself to the required position when I showered?

  • RobLee
    RobLee Member Posts: 269 Member

    I've read some guys say that they were instructed to pull down on the pump daily following their surgery to prevent it from retracting up into the pelvis.

  • Dino_F
    Dino_F Member Posts: 16 Member

    In my case the surgeon (actually the fellowship physician being trained by my surgeon) did not trim off enough length from the tubing from the reservoir to the control device, causing it to "corkscrew" (my surgeon's term) in my scrotum and winding in a permanent upside down position. My surgeon was confident that I could eventually figure it out and I did. I also realized that I could easily operate the device with one hand, which I considered an advantage. Now, 4 years later, it is all second nature to me...no complaints.

  • boltar22
    boltar22 Member Posts: 4 Member

    Thank you for the comments guys.

    I wish the surgeon had informed me of this possibility before hand!

    I will continue with trying to pull down on the control unit while I shower and see if it moves to where it is supposed to be.

  • boltar22
    boltar22 Member Posts: 4 Member

    I like Tena myself for a light duty pad.

    I use those and the Depends for heavier days!