Artificial Urinary Sphincter Implant (AMS 800) -- help!!!

135

Comments

  • tpelle
    tpelle Member Posts: 184
    edited March 2017 #42
    dga5151 said:

    Pain from AUS 800

    tpelle,

    i had AUS800 implant at Mayo 6 weeks ago. It's being activated this week. I continue to experience pain, especially in late afternoon and evening. As you describe it is more like irritation, or chaffing. Has your pain improved, or is it something you just learn to live with? I'm hoping it'll improve.

    dga5151

    Pain from AUS800

    dga:  After both my first implant in January 2013 and later my replacement AUS800 implant in January 2015 I had continuing pain/irritation in the scrotum. The 100 mg/da Amitriptyline, later changed to 75 Nortriptyline were prescribed helped but did not eliminate the pain.  Finally about 20 months after the second surgery (last fall) I noticed the pain was gone. When I saw the surgeon three weeks ago I told her the pain had subsided several months ago and asked if I should stop the med.  She said not yet -- that it's probably the medication finally working.  Further, she said that at some point later on I can wean off the Nortriptyline to see if the pain returns.  I hope this helps.  tpelle

     

  • dga5151
    dga5151 Member Posts: 3
    edited March 2017 #43
    tpelle said:

    Pain from AUS800

    dga:  After both my first implant in January 2013 and later my replacement AUS800 implant in January 2015 I had continuing pain/irritation in the scrotum. The 100 mg/da Amitriptyline, later changed to 75 Nortriptyline were prescribed helped but did not eliminate the pain.  Finally about 20 months after the second surgery (last fall) I noticed the pain was gone. When I saw the surgeon three weeks ago I told her the pain had subsided several months ago and asked if I should stop the med.  She said not yet -- that it's probably the medication finally working.  Further, she said that at some point later on I can wean off the Nortriptyline to see if the pain returns.  I hope this helps.  tpelle

     

    Pain from AUS800

    Thanks very much, tpelle. I'm at Mayo and saw doctor yesterday. Pain seems to be subsiding in the past 10 days, but not gone. He suggests OTC pain meds and believes it's still healing. But device was activated yesterday and seems to be working great. A little clumsy, but I'm sure I'll get used to it...I hope.

  • tpelle
    tpelle Member Posts: 184
    edited March 2017 #44
    dga5151 said:

    Pain from AUS800

    Thanks very much, tpelle. I'm at Mayo and saw doctor yesterday. Pain seems to be subsiding in the past 10 days, but not gone. He suggests OTC pain meds and believes it's still healing. But device was activated yesterday and seems to be working great. A little clumsy, but I'm sure I'll get used to it...I hope.

    AUS800 Activated

    dga - you will be an old "hand" in the new process of peeing in a matter of days!  At first, I occasionally stood at the toilet waiting for the flow, forgetting to turn on the faucet.  Good luck.  tpelle

  • adwhiz
    adwhiz Member Posts: 9
    edited April 2017 #45
    hap4174 said:

    No regrets

    I am so enjoying not carrying a pad in every pocket when I am out that the pain is minor. I have been thinking that the pump assembly inside  the scrotum has been my problem but the area around the cuff is very tender also so that coulld be very well be my problem also since pain is sometimes hard to pin point. My doctor tells me to give it time..maybe he is right.

       Thanks again for your help. Hope your garden does well.

    Hap 

    AUS is my next hope

    Nearly 2 years ago I had robotic surgery to remove my prostate. Following surgery I have had nearly continual incontinence and on average I've gone through 4-5 depends during the day and 1 or 2 in the evening. I read a comment on here where another individual with serious incontinence said it was the worst thing in his life and he hated every single pad, every leak and every moment he wasn't able to live a normal life. I know what he means. I detest this leakage; I have done all of the exercises and all of the other recommendations to no avail. I met with both my urologist and oncologist last week and both of them enthusiastically recommended the AUS 800 procedure. So, fellow sufferers I am heading into surgery on April 20th for the procedure. I have read everything pro and con, and at the end of the day I can't spend another year with endless depends on hand, and not a shred of normalcy. I sure hope I'll be as happy as many of you are who have done this procedure. I'll check back in following the surgery and share my thoughts going forward.

  • RobLee
    RobLee Member Posts: 269 Member
    edited April 2017 #46
    adwhiz said:

    AUS is my next hope

    Nearly 2 years ago I had robotic surgery to remove my prostate. Following surgery I have had nearly continual incontinence and on average I've gone through 4-5 depends during the day and 1 or 2 in the evening. I read a comment on here where another individual with serious incontinence said it was the worst thing in his life and he hated every single pad, every leak and every moment he wasn't able to live a normal life. I know what he means. I detest this leakage; I have done all of the exercises and all of the other recommendations to no avail. I met with both my urologist and oncologist last week and both of them enthusiastically recommended the AUS 800 procedure. So, fellow sufferers I am heading into surgery on April 20th for the procedure. I have read everything pro and con, and at the end of the day I can't spend another year with endless depends on hand, and not a shred of normalcy. I sure hope I'll be as happy as many of you are who have done this procedure. I'll check back in following the surgery and share my thoughts going forward.

    AUS is my next hope

    Good luck! I hope everything goes well for you. I'll be right behind you... mine goes in May 22nd

  • tpelle
    tpelle Member Posts: 184
    adwhiz said:

    AUS is my next hope

    Nearly 2 years ago I had robotic surgery to remove my prostate. Following surgery I have had nearly continual incontinence and on average I've gone through 4-5 depends during the day and 1 or 2 in the evening. I read a comment on here where another individual with serious incontinence said it was the worst thing in his life and he hated every single pad, every leak and every moment he wasn't able to live a normal life. I know what he means. I detest this leakage; I have done all of the exercises and all of the other recommendations to no avail. I met with both my urologist and oncologist last week and both of them enthusiastically recommended the AUS 800 procedure. So, fellow sufferers I am heading into surgery on April 20th for the procedure. I have read everything pro and con, and at the end of the day I can't spend another year with endless depends on hand, and not a shred of normalcy. I sure hope I'll be as happy as many of you are who have done this procedure. I'll check back in following the surgery and share my thoughts going forward.

    adwhiz:  Please do check back

    adwhiz:  Please do check back and give us and those who may follow you an indication of your progress.  During the few days after April 20th you may be thinking why, oh why did I have this surgery. I did. Your testicles may be colorful and swollen, and you will have to deal with the dreaded catheter for a week or so. After removal of the catheter, as time approaches the activation date, the swelling and pain will have diminished greatly. All of the pain may not be gone by then, but your mind will be on learning the process of using the AMS800 pump --  stroking the pump two times or more to allow for a strong urine flow, yet not so many strokes that you have to wait at the toilet for for the balloon to fill the cuff and cut off any further flow.  In my case, one strong stroke of the pump and one short stroke is best for me.  Soon after activation you should be very happy with your decision to go with the AMS800.  tpelle

  • adwhiz
    adwhiz Member Posts: 9
    edited April 2017 #48
    RobLee said:

    AUS is my next hope

    Good luck! I hope everything goes well for you. I'll be right behind you... mine goes in May 22nd

    Thanks

     I appreciate your encouragement and I'll surely post an update following the procedure. I'm in for preop testing this morning and my anxiety meter is rising rapidly. 

  • adwhiz
    adwhiz Member Posts: 9
    tpelle said:

    adwhiz:  Please do check back

    adwhiz:  Please do check back and give us and those who may follow you an indication of your progress.  During the few days after April 20th you may be thinking why, oh why did I have this surgery. I did. Your testicles may be colorful and swollen, and you will have to deal with the dreaded catheter for a week or so. After removal of the catheter, as time approaches the activation date, the swelling and pain will have diminished greatly. All of the pain may not be gone by then, but your mind will be on learning the process of using the AMS800 pump --  stroking the pump two times or more to allow for a strong urine flow, yet not so many strokes that you have to wait at the toilet for for the balloon to fill the cuff and cut off any further flow.  In my case, one strong stroke of the pump and one short stroke is best for me.  Soon after activation you should be very happy with your decision to go with the AMS800.  tpelle

    AUS800 surgery

    Well, I am 48 hours away from my surgery. There have been times in the last week that I thought of cancelling this; that I could manage the incontinence, and that it would magically return to normal. Then I realize I am standing in line at Costco to purchase yet another huge box of depends (72 in a box.) That brings this all back into perspective and reminds me once again that I truly detest every part of the incontinence and I'll be so happy when the procedure is complete. I'm frightened (heck, I am scared!) but I'm hopeful of a successful placement and return to a life without pads, social limitations and unhappiness.

  • Josephg
    Josephg Member Posts: 317 Member
    adwhiz said:

    AUS800 surgery

    Well, I am 48 hours away from my surgery. There have been times in the last week that I thought of cancelling this; that I could manage the incontinence, and that it would magically return to normal. Then I realize I am standing in line at Costco to purchase yet another huge box of depends (72 in a box.) That brings this all back into perspective and reminds me once again that I truly detest every part of the incontinence and I'll be so happy when the procedure is complete. I'm frightened (heck, I am scared!) but I'm hopeful of a successful placement and return to a life without pads, social limitations and unhappiness.

    You will be fine

    Hopefully, you looked at my postings on my experiences with the surgery and recovery.

    I would do it again in a heartbeat, if needed.

    It is a game changer, and it will give you your normal life style back.  YOU will again be in control, again.

    Good luck!!!

  • RobLee
    RobLee Member Posts: 269 Member
    adwhiz said:

    AUS800 surgery

    Well, I am 48 hours away from my surgery. There have been times in the last week that I thought of cancelling this; that I could manage the incontinence, and that it would magically return to normal. Then I realize I am standing in line at Costco to purchase yet another huge box of depends (72 in a box.) That brings this all back into perspective and reminds me once again that I truly detest every part of the incontinence and I'll be so happy when the procedure is complete. I'm frightened (heck, I am scared!) but I'm hopeful of a successful placement and return to a life without pads, social limitations and unhappiness.

    I'm frightened (heck, I am scared!) but hopeful of success

    Well said. Mine is just four weeks away and I keep having the same thoughts. Scared. God I'm so scared. This is unlike any other surgery I've had before (and that's been about a dozen). The pain and swelling are to be expected. It's the strong possibility that the unit might fail, or require revision surgery to adjust size and placement, or perhaps just not be good enough to stop the leakage and still require a pad. I've met so many guys with that. Then there's the inevitable tissue erosion. I'm sure you've researched all of this yourself. None of us go into this lightly.

    But it's got to better than what you (we) are going through now. So I wish you the best of luck, both on Thursday and in the six weeks or so to follow. Here's hoping for 100% success!

  • geo21
    geo21 Member Posts: 2
    ams 800

    had ams implanted 6 weeks ago and activated 3 days ago. started perfect but have started to dribble when have bowel movement. worried beginning of problem or is this normal ??

  • jimco236
    jimco236 Member Posts: 13 Member
    edited April 2017 #53
    geo21 said:

    ams 800

    had ams implanted 6 weeks ago and activated 3 days ago. started perfect but have started to dribble when have bowel movement. worried beginning of problem or is this normal ??

    AMS 800

    GEO21

    Normal for me. You may find some other activities will cause leaking.

  • adwhiz
    adwhiz Member Posts: 9
    Josephg said:

    You will be fine

    Hopefully, you looked at my postings on my experiences with the surgery and recovery.

    I would do it again in a heartbeat, if needed.

    It is a game changer, and it will give you your normal life style back.  YOU will again be in control, again.

    Good luck!!!

    AUS800 in place

    Good morning, all --

    Well, it's a done deal. I had the implant placed yesterday and from all indications everything went well. I have pain in the area, primarily around the stiches and it's difficult to get up from a chair. I talked to my doctor at length this morning before leaving the hospital and yes, there are pitfalls and concerns about the device. However, on average he said with care and proper procedures it's good for something around 10 years before any replacement. I can live with that. I've got 6 weeks ahead of me until it's activated so I'll check back in as I progress. Thanks for all of the encouragement, my friends. I do appreciate it.

  • RobLee
    RobLee Member Posts: 269 Member
    adwhiz said:

    AUS800 in place

    Good morning, all --

    Well, it's a done deal. I had the implant placed yesterday and from all indications everything went well. I have pain in the area, primarily around the stiches and it's difficult to get up from a chair. I talked to my doctor at length this morning before leaving the hospital and yes, there are pitfalls and concerns about the device. However, on average he said with care and proper procedures it's good for something around 10 years before any replacement. I can live with that. I've got 6 weeks ahead of me until it's activated so I'll check back in as I progress. Thanks for all of the encouragement, my friends. I do appreciate it.

    Congratulations!

    Congratulations, and happy healing :)

    Hoping to be joining you soon "on the other side"

  • adwhiz
    adwhiz Member Posts: 9
    RobLee said:

    Congratulations!

    Congratulations, and happy healing :)

    Hoping to be joining you soon "on the other side"

    Day 1 of AMS800. Spray not stream?

    After spending the night in the hospital on the most uncomfortable bed in the world I was released yesterday morning. The pain comes and goes and I do have some medication if needed. When I was first able to urinate after coming home, I discovered two things: one, it was incredibly hard to aim the stream, and two, the stream is very weak. Writing the word stream is a misnomer - it's more like a spray at the beginning. I did read of another post where the person felt the swelling caused the weak stream, so I'll see how it goes over the weekend before hitting the panic button. All in all, I feel pretty good with the exception of serious pain when I try to get up from sitting on my couch. Ah well, I have images of some normalcy on the near horizon so it's all worth while.

  • bnorth
    bnorth Member Posts: 2
    geo21 said:

    ams 800

    had ams implanted 6 weeks ago and activated 3 days ago. started perfect but have started to dribble when have bowel movement. worried beginning of problem or is this normal ??

    leaking due to stress

    I've had my AUS activated since 2/13/17 and for the most part I'm pretty happy.  I will add however, that some stress on the surrounding area i.e. bowel movement or even stress of pain during certain movements.  For example, I broke my femur a few weeks ago and discovered that during those awkward moves from sitting to standing can cause some pain/strain and make everything tighten up a little causing a little leak.  Still it is light years better than before the AUS was installed.

    You may also experience some issues as you slide off of a chair or car seat or any hard surface.  Again, still better than before the installation.  Try to time yourself for "pit stops" ( hour or so it varies) this will help you.  It won't eliminate that occasional leak; but, you will learn to adjust your movements a little as you learn the system.

    Hope this helps?!  Good luck!!

     

    B

  • bnorth
    bnorth Member Posts: 2
    migration of the activator switch

    'Kind of curious as to whether or not anyone as had issues with the activator switch migrating "up" the scrotum?  It's still reachable; but, as this puppy went up it seemed to drag my right testicle with it.  This does make one squeeze somewhat carefully, if you know what I mean;-)

  • adwhiz
    adwhiz Member Posts: 9
    edited May 2017 #59
    RobLee said:

    AUS is my next hope

    Good luck! I hope everything goes well for you. I'll be right behind you... mine goes in May 22nd

    Best wishes

    Good morning --

    So, you're a few days away from your big day. It'll be a challenge in the beginning and as many on here have noted it's going to take time to adjust to it all. Mine has been in for several weeks (June 5th is the magic activation day) and it's still hard to believe all of that equipment is inside me. Occasionally I feel a little pain but nothing to be concerned about. I've spent a fair amount of time fumbling around trying to imagine how it will work and all --

    I really do wish you the very best in your own experience. Do let us all know how it works for you.

    Cheers,

     

  • RobLee
    RobLee Member Posts: 269 Member
    adwhiz said:

    Best wishes

    Good morning --

    So, you're a few days away from your big day. It'll be a challenge in the beginning and as many on here have noted it's going to take time to adjust to it all. Mine has been in for several weeks (June 5th is the magic activation day) and it's still hard to believe all of that equipment is inside me. Occasionally I feel a little pain but nothing to be concerned about. I've spent a fair amount of time fumbling around trying to imagine how it will work and all --

    I really do wish you the very best in your own experience. Do let us all know how it works for you.

    Cheers,

     

    AUS surgery was this past Monday

    Thanks for the well wishes!  The surgery was actually this past Monday, May 15th. I moved it up a week so it could be activated before the July 4th holiday. Coincidentally, it was July 5th last year that I received my cancer diagnosis by phone following the biopsy at the end of June.

    Medically I think everything went okay. My scrotum is the color of an eggplant and everything is swollen but is not painful. I think that's to be expected. But the day of surgery was quite unpleasant. There were complications. It was not the quick procedure I had been led to believe it would be. I have been reluctant to post this because I don't want to discourage anyone else who may be considering having this device implanted. But what happened could have happened to anyone having anything done, and it was not specifically related to the AMS800. Sometimes we beat the odds and sometimes the odds beat us.

    So now you're about halfway to your activation date, and it soulds like everything is going well for you. I am looking forward to eventually joining you "on the dry side"... And thanks again for thinking of me!

  • adwhiz
    adwhiz Member Posts: 9
    RobLee said:

    Congratulations!

    Congratulations, and happy healing :)

    Hoping to be joining you soon "on the other side"

    Ok, my AUS800 is now active!

    Today my friendly urologist activated my implant. I am so hopeful that this will be the solution to my endless (and awful) incontinence. I have mixed emotions at this point, and I suppose after two years of continual incontinence I'm just skeptical that this will really work. Believe me, I am ready and willing to go ahead with the new equipment and learn the best practices to use the implant as rapidly as is possible. In the meantime, I will keep everyone informed as to my progress.