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

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".  

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

still major pain 12 days after surgery

progolf said:

ams 800

still having major pain 12 days post 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 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 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.  

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). 

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.

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,

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,

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

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.

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?