AMS800

Taz28739

I am 75, physical fit and very active with some type of physical exercise 5 days a week. I had a prostatectomy in 2015, 6 weeks of radiation in 2016 and now suffering for incontinence.  My doctor said I have two choices.  Do nothing and live with the incontinence for the rest of my life or get the AMS 800. Since living with incontinence is not an option for me, I am looking to learn what the negatives are.  Almost all the comment on this site are favorable and I wanted to know if anyone had a terrible experience, what are the drawbacks, is there any physical limitation, how effect is the AMS 800 etc. Any comments would be greatly appreciated.

RobLee

Age 66 and had AUS 3 months ago

I am 66 and had my prostatectomy one year ago with the AMS800 implanted just three months ago. I did tons of research beforehand and was aware of most of the possible complications with the AUS. I even got to play with one several months before the surgery. I had a long list of questions for the surgeon and he assured me that everything would go well and that it was a simple procedure. It didn't and it wasn't. Still, in the end, life with the AUS is better than without it. Most of my complications are documented in my blog here on CSN. Just click on my name to the left. You may want to pick up at chapter 3 or 4.

I read many of the glowing reports on cancer forums and felt suspicious, like there had to be a catch. It all just sounded too good to be true. I've had about a dozen surgeries before the prostate cancer, but for some reason, I was more apprehensive about the AUS surgery than I had for any other. But I did survive and the device is functioning properly. I should warn you ahead of time that the only true horror story I've heard of was an older guy who had already had radiation prior to the implant.

So anyway I had robotic prostatectomy on Aug 31, 2016 and was told immediately that due to adverse pathology (T3B, SVI) I would need adjuvant radiation. But four months later I was still largely incontinent and so was put on Lupron to **** the spread of the cancer and put into biofeedback physical therapy with a Kegel coach. In April I was informed that there was "no way" that I would be continent enough to begin radiation (it had already been delayed over a full month) and was referred to a surgeon for the AUS. He told me that it was better to have it implanted before radiaion rather than after becuase the radiation changes the tissues.

I had read about the high rate of revision with the AUS, around 25%, and the limited lifesan of the device, which is 8-10 years. The reason is not because of device failure but because the device erodes the urethra and must be relocated periodically. While they're in there they just replace the whole thing anyway. The big day finally came and the surgeon was delayed by about three hours. I was left laying on a gurnry and after going all day without food or fluids of any sort was finally put under after 2PM. I woke up at 6 and was asked to pee. I couldn't. Finally at 8PM the surgeon put in a Foley catheter. Three days later the Foley was removed but I still could not pee. A week later the same thing.

So after two weeks with a Foley he did a cystoscopy and scheduled me for emergency surgery to revise the implant to the next larger cuff. Follwoing the revision I began to experience severe pain in my groin, which I described as somewhere between sciatica and a kick in the balls. He said it was due to swelling form the surgery. I still have not been given an explanation why I did not experience this after the initial implant surgery and not until after the revision. Anyway, of course everything else now had to be pushed back another couple weeks. But finally the device was activated three weeks ago. I had my mapping scan at the radiologist and am finally scheduled to begin radiation next week.

I found out my first day with the AUS that it still leaks a little. It's not much but is enough to show. I wear a light pad in everything, including loungewear, and go thru about one per day. They do not become soaked like before the implant, but I can see spots on the pads. The spot is enough to show thru a swimsuit so I wear a suit with patterns and put a washcloth in my crotch until I'm ready to get in the water.  Also I sometimes feel a little squirt which then becomes trapped between my natural sphincter and the AUS, so the urine become pressurized and I have to be careful as I know it will squirt out as soon as I release the pump. Plus there is still the discomfort of the device being in my groin. I have to be careful getting in and out of the car, and some seats are very uncomfortable. It even affects my stride when I walk.

So to someone who is totally incontinent, would I still recommend the AMS800? The answer is yes. The pain and inconvenience is far better than delaing with diapers or condom catheters and leg bags. I am somewhat envious of those guys who had the simple, easy procedure I had been promised. But nothing else has ever been easy for me, so why should this have been?

Trew

AMS800

I have had my AMS800 in for 6- 7 years now.  first 3- 4 years it was pretty dry but for the last 3 years or so I am having some leakage when I sit in certain positions or ride a bike.

 

Scar tissue has grown back in the urethra and in Sept I am going in to have my urethra dialated.  The AMS800 has to be deactivated for that procedure.  First time I have had anyone mess with my AMS800 since it was installed.  

 

The AUS800 does not last forever.  Expect that.  But my life has been 100% improved since the AUS was first installed.  Life before the AUS was unbareable.  I was using 8- 15 pads a day and would have frequent accidents.  I have no regrets about going forward with the surgery.  Fact of life, life is different after Prostate Cancer.  The AUS is just one of those changes

 

VascodaGama

Trew

Trew,

Where have you been? Welcome back.

From your update I take it that the only relevant issue regards the effects from the treatment not the bandit itself. I hope the dilatation goes well and that AUS is back to service. Can you update us your present situation in regards to the cancer? What is your PSA? Are you involved with any recurrence?

Best wishes,

VG

Trew

VascodaGama said:

Trew

Trew,

Where have you been? Welcome back.

From your update I take it that the only relevant issue regards the effects from the treatment not the bandit itself. I hope the dilatation goes well and that AUS is back to service. Can you update us your present situation in regards to the cancer? What is your PSA? Are you involved with any recurrence?

Best wishes,

VG

It has been awhile since I

It has been awhile since I have been on this site.  I lost the PW,etc.....

 

Since I completed radiation in 2009/10 my PSA has stayed at 0.  The AUS has been a big help and made life bearable.  But I have been told they only last so long and then the cuff at the sphinter begins to let go.  I am a little apphresnsive about the dialation procedure.  That is scheduled for Sept 15.  The doctor has to turn the AUS off because the device used in the process has to go all the way up into the bladder.   

 

I got on this site last night looking for some of the group I used to post with here.  I have been wondering how they have been.  I see you are still here, Vascoda, and hope all is well with you.

 

Overall my opinion of PC hasn't changed.  It is just a bad egg in life, but I still have life.

 

 

Itzagift

Personal history of AUS

After 12 years of complete incontinence my AUS was installed 05-30-12 with a revision to stabilize the pump on 12-05-12. I'm running up on 75 years in December and cannot recommend enough the AMS800 for appropriately selected patients.  I am about 90-95% dry and that's a good thing. My Uro babe assured me at the time she installed it that 100% means the cuff is too tight and can accelerate erosion. A small pad lasts me well over 24 hours. I've been bike riding at least 3 days a week for all these years with no problems at all (using a special seat). Done many centurys too. I've survived 3 cancers and many surgeries that have saved my life...but the AUS has let me really live. 

Cassiono

New to the ams 800

I recently had a 800 implanted, and am eagerly awaiting activation in a few weeks. Can I ask some naive questions? Do I better sit or stand when passing water? I like to have a drink with my mates in a pub. Is urinating in a public restroom a problem? Is it painful or uncomfortable to squeeze the pump, ie are there nerves that are affected in the scrotum? I can see from the comments that in the US a period of 6 weeks before activation is the norm. Where I live, (Norway) they activate after 4 weeks. Has the shorter time any ill effects? If these questions have been responded to before, please forgive an anxious foreigner.

tpelle

Cassiono said:

New to the ams 800

I recently had a 800 implanted, and am eagerly awaiting activation in a few weeks. Can I ask some naive questions? Do I better sit or stand when passing water? I like to have a drink with my mates in a pub. Is urinating in a public restroom a problem? Is it painful or uncomfortable to squeeze the pump, ie are there nerves that are affected in the scrotum? I can see from the comments that in the US a period of 6 weeks before activation is the norm. Where I live, (Norway) they activate after 4 weeks. Has the shorter time any ill effects? If these questions have been responded to before, please forgive an anxious foreigner.

AMS 800 Experience

Cassiono  My experience  -- Sit or stand?  Easier to access pump while standing.  Public Restroom? I need to drop my drawers so stall is best.  Painful or uncomfortable to squeeze the pump? No. Four wks vs six wks? Don't know.  Six weeks more healing time.

lmered

Itzagift said:

Personal history of AUS

After 12 years of complete incontinence my AUS was installed 05-30-12 with a revision to stabilize the pump on 12-05-12. I'm running up on 75 years in December and cannot recommend enough the AMS800 for appropriately selected patients.  I am about 90-95% dry and that's a good thing. My Uro babe assured me at the time she installed it that 100% means the cuff is too tight and can accelerate erosion. A small pad lasts me well over 24 hours. I've been bike riding at least 3 days a week for all these years with no problems at all (using a special seat). Done many centurys too. I've survived 3 cancers and many surgeries that have saved my life...but the AUS has let me really live. 

Bike Seat

I am also an avid bike rider and am concerned about the AUS causing problems.  My doctor said that he will teach me to deactivate the device when I ride my bike and hopefully that will increase the life of the device.  I would appreciate finding out what special seat you use on your bike.  I am scheduled to have surgery to iplant the AUS on September 25.

lmered

AUS surgery

I am 8 years post op divinci surgery.  Good news is no return of the cancer but my incontinence has progressed from fairly minor to major.  The last couple of years has been a problem with up to 5 pads per day, leakage, conern about doing things in public etc.  My doctor says that the AUS is the way to go and makes it sound like a fairly minor procedure.  He says he has done hundreds of them.  After reading posts on here I am concerned about pain, failure of the device etc.  As a result I am reconsidering having the surgery.  I am scheduled for September 25.  I would appreciate hearing comments about my concerns.  Thanks in advance for your help, I found this forum to be quite helpful when I was deciding on my original cancer surgery and things have obviously turned out very well.  

RobLee

AUS surgery

Imered, please read my post, second from the top "age 66".  In it I describe just about anything that can go wrong.  It is a very good device but the surgery may not be as easy as some say it was.  There is lots of swelling and discomfort for several weeks afterwards, perhaps even months.  But it is far better to have the surgery than it would be to continue using many pads per day and curtailing your lifestyle because of incontinence. Do not be afraid of the surgery or the recovery. Get the AUS, it will make your life much enjoyable.

Trew

There is no alternative.  One

There is no alternative.  One can't live with incontience, really.  I was using 7- 15 pads a day.  I had the AMS installed now over 6 yrs ago and, believe me, it is worth the try.

 

No regrets about having one installed myself.  

 

You will find that the AMS in the scrotem will act like one of the boys.  Peeing outside on a cold day can be a challenge.    

Modelrailfan564

AMS800&penile implants

I am having serious lssues finding a high vol doctor that performs the implants in Ohio.I have Caresource insurance.Can't use Cleveland Clinic,and Cincinnati says they only have done a few procedures of this kind in a full year.What is up with this.?Can't I get the best treatment for my incontinanc.?Help!!!

RobLee

Who in Cincinnati?

I know the Urology Group in Cincinnati is the largest practice in the city, if not an oligopoly there.  I know at least one doctor in that group has done a number of AMS800 implants... though I do not know how many. I would suggest that you go to the American Medical System website, which is now owned by Boston Scientific, and look for a recommended local physician.

Trew

Retired and need supplemental.  My retirement plan stopped funding our supplemental.  In place of that they established a medical savings account- they put so much money into an acct and we go out and buy any program we want.  Some freinds thought they had hit the jackpot by buying the cheapest plan offered.  I insisted to my wife and she agreed, we need Plan F.  We get to use any network, any doctor, any hospital.  We spend more than the plan puts into the acct, but hey!  I have had cancer and I have had complications.  I can not mess around with networks and PPOs or whatever.  If a doctor accepts medicare, my plan F is also accepted, anywhere.  

 

right now I am having complications in my urethra.  Scar tissue coming back after radiation.  I want to get a good doctor- no network complications.  Such a good choice for me.

 

 

lmered

Works Great!!

I had the AMS 800 surgery on Sept 25 as planned.  It was activated 6 weeks later (which was three weeks ago).  Very little leakage, one light pad in 24hrs, started riding my bike four weeks after surgery and did 70 miles last week no problem.  Took pain killers for three days after surgery and very few problems.  My surgeon has done hundreds of these and he said mine went very well.  I go for follow up in a week but right now I am very happy I went through with the surgery.  It's like I have a new lease on life!!

Josephg

Works Great!!

Great news, Imered.  I am coming up on my 4 year anniversary for my AMS 800 implant.  Still works as good as when it was originally activated.  It is truly a game changer, in restoring quality of life in this area.  I wish you the best of success with yours going forward.

addison10

lmered said:

Works Great!!

I had the AMS 800 surgery on Sept 25 as planned.  It was activated 6 weeks later (which was three weeks ago).  Very little leakage, one light pad in 24hrs, started riding my bike four weeks after surgery and did 70 miles last week no problem.  Took pain killers for three days after surgery and very few problems.  My surgeon has done hundreds of these and he said mine went very well.  I go for follow up in a week but right now I am very happy I went through with the surgery.  It's like I have a new lease on life!!

AMS 800

Imered- I'm considering the AMS 800.  PC spread while on "active surveillance".  Had RP and when Ultra psa began to rise had 40 radiation sessions.  5 years and no evidence.  ?  Is there more incontinence between the AMS 800 implant and activation?  RP in 2013.  Radiation 2015.   Currently use 2-4 shields a day.  Running and hiking cause significant incontinence.  Where did you have your AMS 800 surgery?  Very happy for you it helped so much.  Thanks for any thoughts.  

progolf

RobLee said:

Age 66 and had AUS 3 months ago

I am 66 and had my prostatectomy one year ago with the AMS800 implanted just three months ago. I did tons of research beforehand and was aware of most of the possible complications with the AUS. I even got to play with one several months before the surgery. I had a long list of questions for the surgeon and he assured me that everything would go well and that it was a simple procedure. It didn't and it wasn't. Still, in the end, life with the AUS is better than without it. Most of my complications are documented in my blog here on CSN. Just click on my name to the left. You may want to pick up at chapter 3 or 4.

I read many of the glowing reports on cancer forums and felt suspicious, like there had to be a catch. It all just sounded too good to be true. I've had about a dozen surgeries before the prostate cancer, but for some reason, I was more apprehensive about the AUS surgery than I had for any other. But I did survive and the device is functioning properly. I should warn you ahead of time that the only true horror story I've heard of was an older guy who had already had radiation prior to the implant.

So anyway I had robotic prostatectomy on Aug 31, 2016 and was told immediately that due to adverse pathology (T3B, SVI) I would need adjuvant radiation. But four months later I was still largely incontinent and so was put on Lupron to **** the spread of the cancer and put into biofeedback physical therapy with a Kegel coach. In April I was informed that there was "no way" that I would be continent enough to begin radiation (it had already been delayed over a full month) and was referred to a surgeon for the AUS. He told me that it was better to have it implanted before radiaion rather than after becuase the radiation changes the tissues.

I had read about the high rate of revision with the AUS, around 25%, and the limited lifesan of the device, which is 8-10 years. The reason is not because of device failure but because the device erodes the urethra and must be relocated periodically. While they're in there they just replace the whole thing anyway. The big day finally came and the surgeon was delayed by about three hours. I was left laying on a gurnry and after going all day without food or fluids of any sort was finally put under after 2PM. I woke up at 6 and was asked to pee. I couldn't. Finally at 8PM the surgeon put in a Foley catheter. Three days later the Foley was removed but I still could not pee. A week later the same thing.

So after two weeks with a Foley he did a cystoscopy and scheduled me for emergency surgery to revise the implant to the next larger cuff. Follwoing the revision I began to experience severe pain in my groin, which I described as somewhere between sciatica and a kick in the balls. He said it was due to swelling form the surgery. I still have not been given an explanation why I did not experience this after the initial implant surgery and not until after the revision. Anyway, of course everything else now had to be pushed back another couple weeks. But finally the device was activated three weeks ago. I had my mapping scan at the radiologist and am finally scheduled to begin radiation next week.

I found out my first day with the AUS that it still leaks a little. It's not much but is enough to show. I wear a light pad in everything, including loungewear, and go thru about one per day. They do not become soaked like before the implant, but I can see spots on the pads. The spot is enough to show thru a swimsuit so I wear a suit with patterns and put a washcloth in my crotch until I'm ready to get in the water.  Also I sometimes feel a little squirt which then becomes trapped between my natural sphincter and the AUS, so the urine become pressurized and I have to be careful as I know it will squirt out as soon as I release the pump. Plus there is still the discomfort of the device being in my groin. I have to be careful getting in and out of the car, and some seats are very uncomfortable. It even affects my stride when I walk.

So to someone who is totally incontinent, would I still recommend the AMS800? The answer is yes. The pain and inconvenience is far better than delaing with diapers or condom catheters and leg bags. I am somewhat envious of those guys who had the simple, easy procedure I had been promised. But nothing else has ever been easy for me, so why should this have been?

ams 800

RobLee,

had the implant Dec. 19th as outpatient . Still have alot of pain around the control device as well as fluid. No pain at all around either incision. Have Uro followup on Monday. I know one thing, this pain needs to stop. I wasn't counting on this. The Dr. told me that this much pain was unusual....that figures...guess I'm not normal

Trew

progolf said:

ams 800

RobLee,

had the implant Dec. 19th as outpatient . Still have alot of pain around the control device as well as fluid. No pain at all around either incision. Have Uro followup on Monday. I know one thing, this pain needs to stop. I wasn't counting on this. The Dr. told me that this much pain was unusual....that figures...guess I'm not normal

I got one night in the

I got one night in the hospital.  Lots of swelling in the scrotom.  I don't remember if there was pain or not.  Time erases those kind of memories, usually.  

 

 

Trew

addison10 said:

AMS 800

Imered- I'm considering the AMS 800.  PC spread while on "active surveillance".  Had RP and when Ultra psa began to rise had 40 radiation sessions.  5 years and no evidence.  ?  Is there more incontinence between the AMS 800 implant and activation?  RP in 2013.  Radiation 2015.   Currently use 2-4 shields a day.  Running and hiking cause significant incontinence.  Where did you have your AMS 800 surgery?  Very happy for you it helped so much.  Thanks for any thoughts.  

You will continue to leak

You will continue to leak until the device is activated.  Patience.  But you already know this by now.