AMS 800 artificial urinary sphincter

Day 29

Okay, I think I get it now. Yes, the cuff is a bit loose, but that's probably not the real problem.

I've got an over active bladder (or irratable bladder). so when I was taking a leak without touching the pump, that was the bladder beoing full (at only 150 ml) and over reacting. The Vesicare is calming the bladder down. That's why I'm not leaking so badly, and my bladder is not emptying without me touching the pump.

If I had a smaller cuff, and didn't calm the bladder down, I would be no better off! I need to work on the over active bladder, then the cuff wouldn't be such a problem. This may be caused by keeping your bladder too empty. (For the last year my bladder has just been like a pipe, holding nothing, it's gotten lazy.)

Now the trick would be to use this time while I am taking vesicare to try to stretch my bladder (I am usually only emptying 100-200 mls). So instead of emptying it so I won't leak, I should hold on and try and stretch it. Today I managed 300 mls. And 400 mls at 5 am

And I could do pelvic exercies, (Kegels), but they get a bit sore I guess where the cuff is.

Jim

I'm trying accupuncture, to see if that settles the bladder.

The acupuncturist we'll try three treatments and see if it makes a difference.

VascodaGama said:

Good report indeed

Good report indeed.

Thanks Joseph for posting your experiences with incontinence and the AMS 800 performance.

My best wishes for your full recovery from the salvage treatment too. Can you tell us details about the events and the radiation field and Grays choosen for your therapy?

Best wishes.

VG 

Hi VG,

Sure,

I'll relate to you what I know.

First, following my robotic prostate removal surgery, my PSA was .05, not as low as it should have been.  At the 3 month check, it remained at .05, and at the 6 month check it was .06.  At the 9 month check, it was .08, and at the 12 month check it was at .11.  At that point, my Oncologist recommended not waiting until the 'official' .20 threshold was reached to state with formal certainty that cancer remained my body.  His belief from (1) the post-op surgery pathology (4/3 Gleason) and (2) the surgeon report (slight invasion outside of the prostate envelope, but with clean margins) and (3) the relatively short post-surgery time period start and accelerating rise in the PSA, was that I had some rogue cancer cells remaining in the prostate bed and probably not a case of metastasis.

As such, he recommended, based upon my age and health (60 and excellent), an aggressive two-pronged therapy regimen to kill any cancer cells that may have remained in the prostate bed, and that recommendation was combined radiation therapy and androgen deprivation therapy.  He advised that the outcome for radiation therapy was as high as 16% more effective when performed in conjunction with androgen deprivation therapy.  He advised that the overall success rate of this combined therapy, allowing for the margin of error that I may in fact have metastasis, was around 67%.  He advised that without the recommended additional therapy, my life expectancy would probably be in the neighborhood of 10 years, at best, with the last few years having very little quality of life.  He advised that with the recommended additional therapy, and a failed outcome (the 33% chance of no 'cure' because of metastasis), my life expectancy would probably be increased to 15 years, based upon today's known portfolio of advanced cancer treatment options.  Based upon all of that information, the choice for selecting additional therapy seemed like a no-brainer.

First he prescribed a 6 month androgen deprivation therapy with 2 hormones to remove up to 99% of the testosterone in my body.  The first hormone was Lupron, which was administered by a injection in the butt at month 0 and month 3, and this suppressed testosterone production in the testicles, up to 93% of the body's testosterone production.  The second hormone was Casodex which was administered daily by pill, and this suppressed testosterone production in the pituitary gland, up to 6% of the body's testosterone production.  He advised that my body would return to normalcy with whatever testosterone that I had left at my stage in life around the end of the 9th month, but could take as long at the 12th month.

At the start of the hormone therapy, my PSA was .13, and my testosterone level was 357.

At the end of month 1, a Radiation Oncologist referred to me by my Oncologist started the radiation therapy. Radiation was administered to the prostate bed daily for 37 straight weekdays (excluding weekends), and the total Grays count was 68.4 (ironic that 10 Grays exposed over the entire body is a lethal dose).   The process for administering the radiation was to lay on a table and get zapped with varying numbers of beam pulses from 7 different angles, depending upon the specific angle.  Each day, 1 hour before my radiation treatment, I had to drink an exact amount of water (they provided a container specifically for this purpose) and not urinate until after the day's radiation treatment.  This exercise made the bladder approximately the same size each and every day, and allowed them to position the machine's table and radiation beam in a manner to minimize radiation exposure of the bladder and other interior parts, like the urethra and colon.

Each treatment took approximately 10 minutes, and I was allowed to get onto the table with my work clothes and shoes on.  I was fortunate that my treatments were scheduled at 8:00AM, so it barely impacted my workday.  I was also fortunate that I had the AMS 800 implant, as I never felt the stress and strain of a full bladder, nor did I have to make a mad dash to the bathroom after each treatment, as many other male patients had to.

At the 3 month checkpoint subsequent to starting hormone therapy, my PSA was .02, and my testosterone level was 11.

Side effects.....

Hormone therapy - The most prominent side effect is hot flashes followed by cold flashes, and for me, this occurs about every 20-30 minutes while awake and active, and about every hour when sleeping.  I feel the hot flash start, and within 30 seconds my head and neck are sweating profusely (dripping), and my forearms, particularly the wrists, as well.  The hot flash lasts for about 1-2 minutes, and it subsides and is followed by cold (like Icy-Hot pain treatment feeling), perhaps caused by simple evaporative cooling, for about 1 minute.  Then the cycle repeats.  At night, I am awakened by each hot flash, and I have to throw the covers off to cool down.  I also have a floor standing pedestal fan at my side of the bed blowing over me all night, every night.  Needless to say, there is a bit of sleep deprivation that occurs.  When I complained to my wife about the hot flashes, she told me to shut up and 'man up', and she reminded me that women survive this ordeal just fine.

At the 3 month checkpoint, subsequent to starting hormone therapy, my Oncologist advised that he could prescribe Medroxyprogesterone, another hormone, which had proved to be effective in reducing the severity of hot flashes.  He further advised, however, that there was some evidence that the use of this hormone could reduce the overall effectiveness of the androgen deprivation therapy regimen, and he stated that the choice was mine.  That seemed counterproductive to the objective of my therapy, and I decided to stay the course and work thru the hot flashes for the remainder of the 6 month hormone therapy period.

Moments of slight irrationality or less 'logical' thinking than usual can be experienced, and I believe that I reacted out of character in this area in a number of situations.  Nothing major here, but there were occasions where I reflected on an event afterward and thought, "Why did I say that or react in that manner?"

My Oncologist advised me that weight gains of 5-10 pounds over the hormone therapy period are very common.  He further advised that increased exercise alone woold not stop the weight gain, as the hormone treatments alter the rate at which the body arbitrarily sets aside food calories and stores them directly in the body, primarily as fat.  A reduction in the food intake, combined with increased exercise, would be the only true way to have a shot at minimizing the resulting weight gain.  After just purchasing a complete new set of business clothes, as I was going back into the office again after receiving my AMS 800 implant, I was committed to not gaining any significant weight, due to the hormone treatments.  I drastically reduced my food intake during the hormone treatment period, and through the first 3 months, I did not gain any weight.  However, over the next 3 months, I have gained 6 pounds.

Other side effects that can occur with this hormone treatment therapy are permanent enlargement of the breasts (fortunately, not for me, so far), and liver and kidney chemical imbalances, which can be quite dangerous.  I was tested through blood tests at month 1 and month 3, and while some of my chemical readings moved to slightly outside of the normal range, my Oncologist advised that there was no reason for concern at those particular readings.

Radiation therapy - My bowels were impacted to a minor extent, due to irritation caused by the radiation.  My stools became 'fragmented', but not real loose.  I'm told that many patients have real loose stools, even diarrhea, and need to take Imodium to maintain a normal daily regimen.  There was a recommendation to alter my diet to eat very few seedy vegetables, which tend to normally slightly irritate/scrub the bowels, and to increase consumption of rice and similar binding foods.  Since, my situation was not acute, and it was in the middle of the summer fresh vegetable season, I did not adhere to this recommendation.  However, when I noticed the need or urge to move my bowels, I had (and still have) approximately 10 minutes to get to the bathroom, otherwise the urgency becomes quite overwhelming and potentially uncontrollable.  The Radiation Oncologist advised that this will pass in time, though there was no specific time period given, as each person is different.

Similar to bowel irritation, another common side effect of radiation therapy is irritation of the urinary tract and urethra, with increased urgency to urinate and less ability to control it.  I did not experience this side effect, and while I would potentially have less impact, due to the AMS 800 implant, I think that I would have experienced at least the increased urgency, which I did not.

For me, and most patients, the most pervasive side effect of radiation therapy is profound fatigue. For the first 20 treatments, I had no sense of fatigue, and I thought that I simply was not going to be impacted by that side effect.  Around the 25th treatment, I hit the wall, and everything that should have been simple in terms of physical effort, suddenly became a much harder effort to accomplish.  Since the impact is caused by cumulative radiation, my stamina continued to decline throughout the remaining treatments, and continued downward for at least 3 weeks after the treatments were completed.  I could still accomplish the routine tasks that I needed to on a daily basis; however, being a bit pig-headed, I forced myself to accomplish whatever I really needed to get done, like yard work and projects, etc.  There was a lot of heavy breathing and frequent required 'rest' periods, however during those times.  I'm now approximately 3 months post-radiation therapy, and I believe that I'm up to about 80% of my pre-therapy stamina level.

That is about all that I can think of to offer you at this time, regarding my experiences with hormone and radiation therapies.  If you have any specific questions that I did not address above, I'll be glad to do my best to answer them.

Josephg

ricardo1945 said:

artificial urinary sphincter

Have incontinence going on 3 years after my prostate surgery it has never improved. I want my life back and deciding if I should go with ams. Please advise anyone who has had ams

I suffered through ten years of drippage following radical prostatectomy and then had the AMS800 installed.  It wasn't an easy surgery but the results were great.  However, recently it stopped working  --  lost it's hydraulic fluid.  I'm going tomorrow for a systoscopy and ultra sound; then to see the surgeon.  I'm anxious to have it repaired.  I'm also anxious to get back to a working AMS800.  So, if your urologist is recommending the artificial sphincter, I'd recommend it in spite of my setback.  tpelle

shiredvd said:

AMS Sphincter

I am scheduled for surgery 1-21-15 and during pre-op instruction was told I would long tern have to mimimise bike riding, no horseback riding or rappelling. I was also told that I will have to alter the way I sit as well as length of sitting. I was told that anything that puts pressure on the space between the scrotum and the anus would reduce successful use of the AUS 800. What were you told before surgery? For 16 months I have used a condom cath and leg bag with leakage about once per month with no restrictions regarding activity so I wonder if quality of life is enough better to undergo surgery.  Thank you to anyone who may be able to give insight as I am confused.

First, you have to decide if your current quality of life, including the process(s) that you currently use to manage your incontinence, is acceptable to you. What 'can't' you do now, due to your incontinence, and how important are those 'can't do now' activities to you in your overall quality of life requirements?  How much of a PIA is your current process for managing your incontinence?

Nobody on this Forum can make that assessment for you, and I'm sure that I'm not saying anything that you do not already know.  I'm not trying to be a smart-**** here, but this is an important decision, one that requires as much assessment, unbiased thought and introspective as any other decision that you make regarding your PCa and any related treatment and/or post-treatment options.  That being said, the folks on this Forum can provide you with lots of unfiltered personal experiences and recommendations, based upon those experiences.

For me, my quality of life was not acceptable, due to my incontinence, after my RP surgery.  I went through 4+ pads per day, and I could not go out of my house and be semi-active (walking) for more than 2+ hours at a time, without my pad filling and overflowing through my underwear and pants (and onto whatever I might come into contact with, like a chair, or someone else's chair).  Forget about being active, like jogging or playing any kind of sporting activities, as I would not risk that associated level of personal discomfort and embarrassment.

I had the AMS implant surgery, and for me, it restored me to a completely acceptable quality of life.  The AMS implant does not restore me to 100% continence, but my surgeon told me prior to the implant surgery that his procedure would not achieve that, by his choice.  He advised me that to put that much cuff pressure on my urethra for 100% continence would result in premature urethra wall thinning, thus setting up the probability of future surgery to adjust the position on the cuff on the urethra.  As a result, I am socially continent, which is 85+% continence, and for me, I have not yet found an activity that I could do prior to my PCa that I cannot do now with my AMS implant in place.

I threw away my BVD's, and I wear Depends (could just as easily wear a pad), just so that any residual or movement/sitting-related leakage, no matter how small, is appropriately contained.  My job has me sitting most of the day, and the AMS implant does not hinder me in any way from being able to sit for hours at a time.  Yes, I can find a position or two, whereby I can feel some minute leakage taking place, due to exterior pressure from the chair being placed on the cuff, but that in no way limits my sitting or any other physical activities (gym 3 times per week, camping, hiking, boating, football, frisbee, etc).

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.

For me, the AMS implant was absolutely and unquestionably a gamechanger in restoring my quality of life, resulting from my severe incontinence after RP surgery.

I've had my AMS implant for 2 years this month, and I do not have a single regret over choosing the implant procedure.

Good luck to you on your decision process.

ricardo1945 said:

artificial urinary sphincter

Have incontinence going on 3 years after my prostate surgery it has never improved. I want my life back and deciding if I should go with ams. Please advise anyone who has had ams

No improvement with leaking after my implant was put in.  Urologist says i may have to have a 2nd cuff put in.  Anyone with like this please give some advice.

ricardo1945 said:

Had the ams 800 and no improvement

No improvement with leaking after my implant was put in.  Urologist says i may have to have a 2nd cuff put in.  Anyone with like this please give some advice.

Ricardo:  I am sorry to hear that your recently implanted AMS800 is not working.  It sounds like when your surgeon activated the system in his/her office either hydraulic fluid did not flow to the cuff to close the urethra or the cuff was much too large to have slowed the leakage flow.  Even if the cuff were too large, you should have noticed some reduction in flow of urine when empyting your bladder.  After activation when you stroked the pump you should have felt the movement of hydraulic fluid from the cuff.  My understanding is that a second cuff is required when the first cuff doesn't totally close off the flow of urine, and there remains some leakage.

My first AMS800 installed in February 2013 worked beautifully for about 17 months.  Suddenly, it stopped working.  When I stroked the pump, I could feel there was no fluid in the pump to push out to the reservoir/balloon.  The surgeon confirmed that the system had lost its hydraulic capability.  I opted to have the failed AMS800 removed; and a new one was implanted on January 14.  The surgeon expects to activate the new system next Monday (February 23).  It feels like she has used a smaller cuff as the flow of urine is less than before.  The old system failed as a result of a pin-sized leak in the reservoir/bladder. 

Good luck.  tpelle

Josephg said:

Insight

First, you have to decide if your current quality of life, including the process(s) that you currently use to manage your incontinence, is acceptable to you. What 'can't' you do now, due to your incontinence, and how important are those 'can't do now' activities to you in your overall quality of life requirements?  How much of a PIA is your current process for managing your incontinence?

Nobody on this Forum can make that assessment for you, and I'm sure that I'm not saying anything that you do not already know.  I'm not trying to be a smart-**** here, but this is an important decision, one that requires as much assessment, unbiased thought and introspective as any other decision that you make regarding your PCa and any related treatment and/or post-treatment options.  That being said, the folks on this Forum can provide you with lots of unfiltered personal experiences and recommendations, based upon those experiences.

For me, my quality of life was not acceptable, due to my incontinence, after my RP surgery.  I went through 4+ pads per day, and I could not go out of my house and be semi-active (walking) for more than 2+ hours at a time, without my pad filling and overflowing through my underwear and pants (and onto whatever I might come into contact with, like a chair, or someone else's chair).  Forget about being active, like jogging or playing any kind of sporting activities, as I would not risk that associated level of personal discomfort and embarrassment.

I had the AMS implant surgery, and for me, it restored me to a completely acceptable quality of life.  The AMS implant does not restore me to 100% continence, but my surgeon told me prior to the implant surgery that his procedure would not achieve that, by his choice.  He advised me that to put that much cuff pressure on my urethra for 100% continence would result in premature urethra wall thinning, thus setting up the probability of future surgery to adjust the position on the cuff on the urethra.  As a result, I am socially continent, which is 85+% continence, and for me, I have not yet found an activity that I could do prior to my PCa that I cannot do now with my AMS implant in place.

I threw away my BVD's, and I wear Depends (could just as easily wear a pad), just so that any residual or movement/sitting-related leakage, no matter how small, is appropriately contained.  My job has me sitting most of the day, and the AMS implant does not hinder me in any way from being able to sit for hours at a time.  Yes, I can find a position or two, whereby I can feel some minute leakage taking place, due to exterior pressure from the chair being placed on the cuff, but that in no way limits my sitting or any other physical activities (gym 3 times per week, camping, hiking, boating, football, frisbee, etc).

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.

For me, the AMS implant was absolutely and unquestionably a gamechanger in restoring my quality of life, resulting from my severe incontinence after RP surgery.

I've had my AMS implant for 2 years this month, and I do not have a single regret over choosing the implant procedure.

Good luck to you on your decision process.

I just had the AMS800 installed January 6 and it was activated two days ago.  Had quite a scare tonight when I pressed the pump, flattened it as it should be done, and urinated only a trickle.  I knew my bladder was full, but it wasn't coming, so I pressed the pump again, and urine rushed out that time.  This has happened three times today. Have you had this problem since yours was installed?  Thanks for your help.