AMS800 Activated!!

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Comments

  • tpelle
    tpelle Member Posts: 184
    #42
    kozykitty said:

    still dry

    Just wanted to let you all know, I'm still dry and pad free after 7 days! It was a week since activation last Thursday. Still haven't tried bike riding, may-be this week-end.  Only problem is sometimes I can't get the pump to release, seems I can't find the right spot and other times it's right there.  I find the pump just not the bubble, then it gets frustrating but still better than the pads. It's great not to have to always have a pad handy just in case you stay out too long or you have been "leaking" more that usual.

    Right Spot

    Hi KK:  I don't understand your comment that you can't get the pump to release.  Once I have the pump controlled by my left hand fingers at the input/output tubing, I find the shut-off button, then insure that I squeeze below it at the bottom of the pump.  Hope this helps.  tpelle

  • Trew
    Trew Member Posts: 932 Member
    #43
    kozykitty said:

    still dry

    Just wanted to let you all know, I'm still dry and pad free after 7 days! It was a week since activation last Thursday. Still haven't tried bike riding, may-be this week-end.  Only problem is sometimes I can't get the pump to release, seems I can't find the right spot and other times it's right there.  I find the pump just not the bubble, then it gets frustrating but still better than the pads. It's great not to have to always have a pad handy just in case you stay out too long or you have been "leaking" more that usual.

    You will become more familar

    KK, You will become more familar with the pump over time.

    When I first started disucssing the AMS with my local uro I asked if he had a unit in the office I could see.  He did.  He got it for me so I could hold it in my hands and he showed me how the device worked- how it would hang in my scrotum and the top button and lower button.  That was a very good moment and I have appreciated it and recommended to a few other guys that they also ask to see the AMS device before it is installed. 

    You can also do a lot of self self examination.  At night, just take hold of the device and feel it inside you from different sides. 

    Also, my AMS pump is just like one of the other boys down there. It moves and turns, and sometimes it even feels larger and smaller in my hand.  I do backpacking now, again, and on a cold day and the original guys pull in tight to the body the pump goes with them and it can be a bit of a challenge to actually dig it up enough to activate the pump.

     

    And I do add my doctor was very good at getting the pump placed in the scrotum with enough tubing in it so generally I don't have too much trouble getting ahold of it.  And after 2 years there are is still the occasional "marble shot" sideways into one of the original occupyiers down there so I might even say softly, "Ouch!"   Such is life with an AUS.  And I always hold on to the pump  once I start urinating in case I have to had an additional pump or two, and to sense when it is again fully inflated and I am safe to move on.

     

    It is an interesting turn of events in the life of a quiet, typical of man.  I have learned to accept it.  Life goes on.

     

     

  • Trew
    Trew Member Posts: 932 Member
    #44
    tpelle said:

    Right Spot

    Hi KK:  I don't understand your comment that you can't get the pump to release.  Once I have the pump controlled by my left hand fingers at the input/output tubing, I find the shut-off button, then insure that I squeeze below it at the bottom of the pump.  Hope this helps.  tpelle

    Working the Pump

    I have felt that on/off button at the top of the pump device but I stay away from it.  My thumb/index finger find the pump easily enough, move to the bottom of the device and give the lower button a few squeezes- very easy for me. 

    There are times when the tissue does get a little sensitive to being squeezed.  That is real tissue down there.

    My present concern is how long will the device last and if new Obamacare/Insurance guidelines will cover a replacement if and when that time comes. 

     

     

     

  • kozykitty
    kozykitty Member Posts: 15
    #45
    working pump

    Thanks Trew

     

    One of my problems is I haven't been pressing HARD enough, can't be too gential.  Also my doc showed me a unit before surgery and it did help plus after surgery there was what looked like a key ring with a pump on it, (replica), I think I should practice on that but things are different once installed.  Also he (doc) said I was built with the scrotum close so there isn'l much of the tubes available to hold 1/4 inch or so but there is no trouble finding the unit and usualy I can manage one hand, two just seem to get into the way and I'm liable to end up with a hand full!!  Still it's MUCH better that before and I'll recomend it to everyone.  As far as having to replace it under Obamacare, I'm working under the VA medical so I don't think that will be a problem.  Hopefully we'll all still be alive when and if the time comes.  (10,15,20 years) or sodown the road

  • kozykitty
    kozykitty Member Posts: 15
    #46
    kozykitty said:

    working pump

    Thanks Trew

     

    One of my problems is I haven't been pressing HARD enough, can't be too gential.  Also my doc showed me a unit before surgery and it did help plus after surgery there was what looked like a key ring with a pump on it, (replica), I think I should practice on that but things are different once installed.  Also he (doc) said I was built with the scrotum close so there isn'l much of the tubes available to hold 1/4 inch or so but there is no trouble finding the unit and usualy I can manage one hand, two just seem to get into the way and I'm liable to end up with a hand full!!  Still it's MUCH better that before and I'll recomend it to everyone.  As far as having to replace it under Obamacare, I'm working under the VA medical so I don't think that will be a problem.  Hopefully we'll all still be alive when and if the time comes.  (10,15,20 years) or sodown the road

    anybody there???

    HEYHAVEN'T  SEEN ANYTHING NEW SINCE I POSTED ON oCT 26TH

    .  ANYBODY THERE???

  • johnny p
    johnny p Member Posts: 5
    #47
    johnny p said:

    AMS 800 now fitted

    Thanks for your encouragement Trew.The op went well with one over night stay in Hospital. Yes things are black & blue & swollen but not too bad. Its more uncomfortable than painful and the main effort is to go towards keeping it all clean to stop infection. The nurse told me that it is impossible to keep the incision sites sterile due to their location and therefore we have to continue with antibiotics for one week. So far so good .

    AMS 800 Now Activated

    Had my AMS activated yesterday. Completely dry so it has all been worth while.

  • Trew
    Trew Member Posts: 932 Member
    #48
    kozykitty said:

    anybody there???

    HEYHAVEN'T  SEEN ANYTHING NEW SINCE I POSTED ON oCT 26TH

    .  ANYBODY THERE???

    I am sure there are a few

    I am sure there are a few people around.  And it seems you are learning to work with the device.

     

     

  • ROLLTIDE
    ROLLTIDE Member Posts: 1
    #49
    AMS800
    How is the 800 working out. I'm thinking about having it installed:-)
  • Josephg
    Josephg Member Posts: 455 Member
    #50
    ROLLTIDE said:

    AMS800
    How is the 800 working out. I'm thinking about having it installed:-)

    AMS 800 Experiences
    Hi Rolltide,

    I outlined my experiences for this device on these pages:

    http://csn.cancer.org/node/188931?page=3 - 5 postings

    http://csn.cancer.org/node/188931?page=5 - 1 posting related to the implant

    It appears that you've already seen the postings made by Trew, who was my mentor and responsible for convincing me that the implant was a logical and appropriate next step to regain my quality of life.

    Absolutely and unquestionably a gamechanger in restoring quality of life for those with severe incontinence after RP surgery.

    I've had my implant coming up on 2 years at this point, and I do not have a single regret over choosing the implant procedure.

  • tpelle
    tpelle Member Posts: 184
    #51
    ROLLTIDE said:

    AMS800
    How is the 800 working out. I'm thinking about having it installed:-)

    AMS800 Not Working

    Had AMS800 implanted Feb 2013.  It had worked faithfully until two weeks ago.  Lost it's hydraulic fluid.  Apparently happens in up to 13 percent of the cases.  So, the reservoir is not filling the cuff.  Different surgeon has ordered a ultrasound and will do a cystocopy to check my diagnosis.  She tried to reset the pump without success. 

    What happened, I belive, is what I complained to the surgeon about fifteen months ago.    That there there is an errant hydraulic tube running crosswise under the urethra close to the surface of the perineum on which I have been sitting thereby grating on the cuff  causing the connection leakage.  The initial surgeon told me that he had done over 600 AUS800 implants worldwide and had to do revisions on only six.  He felt it was not necessary to do further surgery in my case and prescribed Amitriptlyne to squash the pain.

    I'm not telling you this to discourage you.  After being incontinent following the initial prostectomy for ten years, the AMS 800 was God Sent.

    I have no hesitation doing the further surgery to correct this problem.  Be sure your surgeon places the cuff around the uretha where you will not be sitting on it.

    Roll Tide, Class of 57

  • zamboni
    zamboni Member Posts: 1
    #52
    Trew said:

    Johnny, the surgery sounded

    Johnny, the surgery sounded much worse than it turned out to be.

     

    You will have a lot of swelling, no way around that, but the end results were worth the surgery. 

     

    Enjoy the adventure!  I think the AMS is a good call for us men who leak all the time.

     

     

    ams 800

    Hi Trew I just had an 800  model implanted 5 weeks agoI am having a lot of pain and the swelling makes it hard to find the implant is this normal I dont get it activated till late nov just wondered if I should be worried

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