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

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  • addison10
    addison10 Member Posts: 6 Member
    edited December 2019 #82
    ams 800 and ams 700 concurrent implantation

    Has anyone here had both the ams 800 and ams 700 implanted simutaneously?  RP has crushed me in both areas.  Thanks for any experience.  The openness and honesty here for issues that are often life crushing is encouraging.  If anyone here knows someone on active surveillance strongly suggest they don't rely on ultrasound to monitor pc spreading.  It missed mine.  It spread while on "active surveillance".  

  • progolf
    progolf Member Posts: 12
    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 

    ams 800

    12 days after surgery and still in major pain in scrotum....Getting ready to tell the doc to take it out

  • progolf
    progolf Member Posts: 12
    bnorth said:

    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

    ams 800

    still major pain 12 days after surgery

  • progolf
    progolf Member Posts: 12
    lmered said:

    AUS Experience

    After many years of incontinence which got really bad the last two years I decided to have an AUS installed.  The surgery was Sept 25, 2017 and the surgery went very well, I only needed pain killers for about 3 days.  Some discoloration and swelling of my scrotum but nothing that bad.  Began riding my bike (50 to 70 miles per week) after week 4 with no problems.  I do use a Selle seat which has a center cutout through the entire seat as well as a drop nose.  Had the AUS activated 3 days ago and virtually no leakage at all, well maybe a few drops here and there but a small pad last 24 hrs.  I do notice a little more leakage when I ride my bike.  I am thrilled.  Will check in with doctor this coming Tuesday and follow up3 weeks after that.  Surgery was done by Dr Bregg at Sarasota Memorial Hospital.  He has done hundreds of these surgeries and I am absolutely thrilled with the recovery as well as the results.  I would highly recommend to anyone.  What a life changing experience.  

    ams 800

    still having major pain 12 days post surgery

  • Josephg
    Josephg Member Posts: 372 Member
    edited December 2019 #86
    progolf said:

    ams 800

    still having major pain 12 days post surgery

    Pain After Surgery

    Can you be more specific as to exactly where the pain is coming from, and what type of pain it is (sharp/acute that comes and goes or lower level that is constant)?

    There are two incisions that are located in areas, where any movement can impact them, resulting in discomfort, until they fully heal.  The incision in the lower abdomen, in particular, can cause pain with movement, as the underlying muscles had to be temporatily displaced, in order to insert the AMS 800's reservoir bulb.  The pump insertion into the scrotum also inflicts a lot of inner tissue inflammation, which can last for a month or more.

    I found the recovery from the AMS 800 implant to be more difficult than the recovery from the prostatectomy (except for the Foley catheter). 

  • Trew
    Trew Member Posts: 932 Member
    addison10 said:

    ams 800 and ams 700 concurrent implantation

    Has anyone here had both the ams 800 and ams 700 implanted simutaneously?  RP has crushed me in both areas.  Thanks for any experience.  The openness and honesty here for issues that are often life crushing is encouraging.  If anyone here knows someone on active surveillance strongly suggest they don't rely on ultrasound to monitor pc spreading.  It missed mine.  It spread while on "active surveillance".  

    I have met a few of those

    I have met a few of those guys but really didn't discuss it a lot with them.  

    One has to wonder how much hardware the average scrotum can hold.  

    And the long range side effects.  I can see the AUS is starting to go south on me and I really should pay more attention to that.  

     

     

  • addison10
    addison10 Member Posts: 6 Member
    Trew said:

    I have met a few of those

    I have met a few of those guys but really didn't discuss it a lot with them.  

    One has to wonder how much hardware the average scrotum can hold.  

    And the long range side effects.  I can see the AUS is starting to go south on me and I really should pay more attention to that.  

     

     

    Thanks, Trew.  Meeting with

    Thanks, Trew.  Meeting with surgeon at UCSF end of this month.  2nd discussion about dual surgery.  Impotence and incontinence has crushed my long term relationship.  Always thought loss of consortium was nonsense.  It's not.  Your contributions here are priceless.  Appreciate them very much.  

  • progolf
    progolf Member Posts: 12
    hap4174 said:

    AMS 800

    I am in my 13th year dealling with incontinence after prostate surgery. The last 2 years has been much worse (6-8 pads per day). I have considered the AMS 800

    since the onset of incontence and recently had the procedure 5 days ago and am very concerned with the outcome. first I noticed a weak stream and trouble empting my bladder. then the swelling began big time and much pain. I was so looking forward to relief but so far it hasn't happened.

    Has anyone had any similiar problems.

    ams 800

    I am in 3rd week after implant. Still having alot of pain. I also have weak stream and fluid around the control device in the scrotum. Dr. says that should subside, I sure hope so because this is very uncomfortable. 

  • progolf
    progolf Member Posts: 12
    Josephg said:

    Pain After Surgery

    Can you be more specific as to exactly where the pain is coming from, and what type of pain it is (sharp/acute that comes and goes or lower level that is constant)?

    There are two incisions that are located in areas, where any movement can impact them, resulting in discomfort, until they fully heal.  The incision in the lower abdomen, in particular, can cause pain with movement, as the underlying muscles had to be temporatily displaced, in order to insert the AMS 800's reservoir bulb.  The pump insertion into the scrotum also inflicts a lot of inner tissue inflammation, which can last for a month or more.

    I found the recovery from the AMS 800 implant to be more difficult than the recovery from the prostatectomy (except for the Foley catheter). 

    pain after surgery

    Josephg, My pain is constant from the area around the control device and the tube coming from the balloon. I can actually feel the tube. The Dr. says I have fluid built up around the controller so most of the pain is from that area. Actuall looks and feels like a 3rd testicle but a painful one....Hoping this gets better soon because I need some relief.

  • Josephg
    Josephg Member Posts: 372 Member
    progolf said:

    pain after surgery

    Josephg, My pain is constant from the area around the control device and the tube coming from the balloon. I can actually feel the tube. The Dr. says I have fluid built up around the controller so most of the pain is from that area. Actuall looks and feels like a 3rd testicle but a painful one....Hoping this gets better soon because I need some relief.

    Pain After Surgery

    With my first AMS, I was able to feel a piece of the tube in my lower abdomen.  I lost 40 lbs of weight, much around my waist, so the tube, which was initially hidden, became 'feelable' after losing so much waist fat.  It never gave me a problem, but I was careful to protect that area.

    Regarding the pump in the scrotum, it takes time for the inner skin of the scrotum to toughen up, so that when you use the pump, the squeezing of the scrotum tissue no longer causes pain.  The inflammation will resolve itself over time, along with the associated pain when using it.

    Keep your sugeon informed, which it appears that you are doing.  I believe that within another month or two, you will no longer have this pain.

    Hang in there, as the AMS is a gamechanger in your quality of life. 

  • ZebraZ
    ZebraZ Member Posts: 1 Member

    I go in for my first appointment this morning with my doctor. I brought a book of questions! The first time I started thinking more of the AMS 800 I actually started to tear up knowing that this actually might fix my problem, but then now I'm scared to death going to the dr just thinking about it. The long recovery time is holding me back I think.

    I looked yesterday at my journal that I've been writing since 2016 and 90+% of the posts were about incontinences catastrophes. Even though I don't go through that many pads a day, when it blows it's bad.

    I'll let you know what I find out.

    __________________

    09/2016 Radical prostatectomy / 02/2017 Started radiation treatments / 12/2017 AMS 700

  • HoosierTexan
    HoosierTexan Member Posts: 6 Member

    I'm new to the forum. Prostatectomy 4/2019 after 4+3 Gleason and several years of increasing PSA (never over 7). Recurrence in 2020 with slowly increasing PSA. Had 33 pelvic radiation treatments, and PSA continued to increase. Went to MD Anderson and had a PSMA scan, which showed a 5 mm spot on my pelvis. Had 5 targeted radiation treatments on the spot, and was then started on Lupron. After complaining about the number of daily hot flashes, my Urologist put me on Effexor (75 mg). 8 months in with Lupron and 3 months on Effexor, and incontinence is the worst ever - 4-5 pads per day, and I don’t FEEL it leaking. Many sessions with pelvic therapist to do Keegles, but no improvement

    Stopping my Effexor now after learning more about side effects and that it can increase incontinence. Also tired of being tired.

    Seriously looking at the implant. I still exercise a lot, play golf at least 3 times a week, am a general healthy 65 year old. Incontinence is really affecting my moods and quality of life. These comments here are very helpful. Thank you all - my son is a urologist, but defers to my doctor (who trained my son) - when he mentioned the implant it sounded really drastic. But, I’m ready to try anything to reduce the leakage! Anyone have similar experiences and advice? Pro and con are welcome!

  • Tico14
    Tico14 Member Posts: 36 Member

    HoosierTexan,

    I'm in the minority here but since my RALP in 2018 I have been incontinent 4-6 pads a day typically. Ain't fun but while I've read here and elsewhere about the Sling and the AUS devices, more surgery in that "area" turns me off. I exercise four days a week, stationary bike and light weights, walk the dog 2 miles every day (at least) and work around the house like any 76 year old coot. Changing Depends sucks but I'm scared to death of surgery, not to mention showing up unconscious in an ER when they decided I needed a catheter, the pain associated post implantation, replacing it after years of use, recalls, damaging it in some way while implanted you name it. I'm happy for those that have chosen otherwise but I've made my choice.

  • HoosierTexan
    HoosierTexan Member Posts: 6 Member

    Thanks for that perspective. I too hate to go through another surgery and I’m not real keen about a mechanical implant in my scrotum. I think I may wait until i get over the Effexor withdrawal, and maybe until I get off Lupron (February 2024) and then see how I’m doing. After surgery and before radiation and drugs, I could get by with 1-2 “light days” pads per day. So annoying to have digressed. Thanks again

  • Dino_F
    Dino_F Member Posts: 16 Member

    HoosierTexan,

    Welcome to the forum.

    I had proton radiation in 2012, a salvage prostatectomy in 2017, and surgery on my bladder neck and urethra in Feb 2018 because of scar tissue urinary retention problems. After several miserable months of total incontinence (5-7 pads a day plus an overnight underwear), I had an AUS installed in June 2018 and activated 6 weeks afterwards. I have also been on Lupron since Jan 2020 and my PSA has been "undetectable."

    The AUS pressure is set so that a cough will cause me to leak a bit. I have bladder wall issues and very low capacity, however, and I will also leak when the bladder volume exceeds ~150ml. I am consulting a different urologist now about this problem. I am scheduled for a video urodynamics test next week. Perhaps down the line I will need to replace the AUS because of urethral erosion, and I hope that a sufficient pressure will be set so I will leak less but not cause backup into my kidneys.

    Although my situation is not ideal, I still regard my AUS to be a major game changer. I get by with 1 pad a day when I am at home and near a toilet, but I need a couple of heavy pads when I am traveling.

    You are fortunate to have access to MD Anderson, one of best hospitals in the country. If you decide to go the AUS route, try to find the surgeon who has the most experience and make sure that he/she does the surgery and not a fellow or resident.

    I wish you the best possible outcome.

    Dino_F

  • henbo
    henbo Member Posts: 2 *

    Had a radical prostatectomy in Sept. of 2018 and am still having considerable leakage going through 6 or 7 depends a day. Am considering an AUS 800 procedure but wondering how others have faired with this procedure.

  • Josephg
    Josephg Member Posts: 372 Member

    Do it. You won't be sorry. It is an absolute game changer for incontinence as a result of surgery. It restored my life to normality.

  • henbo
    henbo Member Posts: 2 *

    Thanks for your input. From what I am hearing the success and satisfaction rate is very high after the procedure.

  • HoosierTexan
    HoosierTexan Member Posts: 6 Member

    Meeting with Dr. Morey at UT Southwestern in about a week. This has gotten so out of hand, that I really hope it goes well. Clamp, 4-5 pads a day without it. Getting really old buying pads. Hourly reminder of this silly cancer + prostatectomy + radiation. Would be so nice to forget it for a few hours.

    Anyone have a negative experience with the AUS?