AMS 800 artificial urinary sphincter

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Comments

  • jim65
    jim65 Member Posts: 33
    Adjusting to situation

    Day 28: The vesicare tablets have lessened my leagkage (from 80 ml to 50 ml). I am suppoed to use the Vesicare for 2 months. Not sure what happens after that.  The doctor thinks that the tablet will relax my bladder, and perhaps even help it to stretch. I am not very keen to go under the knife again. Maybe I just need to be grateful for the dramatic improvement in my incontinence, and stop whinging :-)

     

  • jim65
    jim65 Member Posts: 33
    Over active bladder

    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 Smile

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

    Jim

  • dmdc
    dmdc Member Posts: 10
    jim65 said:

    Over active bladder

    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 Smile

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

    Jim

    Overactive bladder

    Jim65 --

    Yeah -- I've got some of the overactive bladder problem as well. Been using Detrol, a very old drug. Works by weakening the bladder, but not so much that it can't push urine out when it's supposed to. Seems to work well, but there is a side effect of constipation, as the bowel muscles, I think, are weaked as well. 

    If, with less bladder tension (overactivity) you're essentially dry without adjusting the AUS, sounds like a good solution. I'm cheering for you.

    Me - I developed symptoms of a pinched nerve just before the AUS surgery. The surgeon wanted to defer the procedure pending the outcome of treatment for the pinched nerve, so I'm in the hands of physical therapy. Hopefully I won't need to meed up with a back surgeon!

    Hope you had a great Independence Day celebration.

  • jim65
    jim65 Member Posts: 33
    Acupunctur for Over Active Bladder

    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.

     

  • Josephg
    Josephg Member Posts: 318 Member
    jim65 said:

    Acupunctur for Over Active Bladder

    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.

     

    6 Month Update

    Hi Folks,

    First, I must apologize for not logging into this Forum, and providing posts, over past several months.  My last update was a LONG time ago, and after reading the subsequent posts, it is clear to me that I could have, and should have, provided some value to all of the participants in this Forum during this time.

    First, let me state that Trew has been my mentor, consultant, and confidant, from day #1, when I joined this Forum.  Without him, I am not sure what actions I would have taken.  In fact, without Trew, I am sure that I would not have embarked upon this journey with the implant of the AMS 800.  I will be forever indebted to Trew for his candid replies, thoughts, guidance, and above all, providing hope for a better outcome.

    I have reviewed all of the comments and questions posted to this Forum since my last update. and with the exception of the posts relating to post-surgery pump positioning issues, I can directly relate each and every one of these posts.

    One of the reasons, though not necessarily an acceptable explanation, that I have not been active in this Forum, is that I have regained my normal life activities over the past six months, subsequent to the AMS 800 implant surgery.  This is no insignificant statement, as during this time, my prostate cancer has returned  (or, never went away), and I have undergone both radiation and hormone therapy.  I completed the radiation treatments one month ago, and I will complete the hormone treatments in less than one month from now.  So, needless to say, I have been quite busy during this period.

    The important take-away here, is that I have regained my normal life, in spite of the additional radiation and hormone treatments associated my cancer during this period.  And, while it may seem that the recurrence of cancer is not a normal life activity, the fact that since I had the AMS 800 implant, I was able to sustain normal life activities and social continence, during this challenging period.

    I spent over a year after my prostate removal surgery waiting for my continence to come back.  I was glued to my house (thank God that I was allowed to work from home, due to an understanding boss/employer and job role).  If I did not 'move' too much, my incontinence was fair to poor (2 pads per day).  However, if I went out to the store, say Home Depot, and walked around significantly, I had approximately 2 hours of movement time before I leaked through a pad AND my Depends, AND through my pants.  On those occasions when I left home through necessity, I was a 4+ pad per day person.  Clearly, my continence did not return (I'm one of ther 5%'ers, who do not regain some degree of continence, due to the scope of prostate removal surgery and the adjacent nerve tissue removal that was required), and my lifestyle changed radically after my surgery, and not for the better.   And, yes, I religiously tried the Kegel exercises for about a year with absolutely no change in my incontinence.

    As previously stated, after many consultations with Trew, and surgeons at a world-renown hospital, I decided to have the AMS 800 implant, as my lifestyle was not sustainable in its current state, if it meant being glued to my chair and/or held hostage in my own house.  Following the implant surgery, I experienced all of the post-operative effects, trials, and tribulations that you have identified in your posts.  I did not want to touch the pump, let alone tug it down into my scrotum 2+ times per day for several weeks.  I also had scrotal irritation on the inside wall where the pump contacted it.  When the pump was activated, I could barely control its operation, and many times urinated all over myself, as well as the bathroom fixtures and floor.

    BUT........................  With time and patience, and practice, all of these very minor issues (in relative terms to remaining incontinent forever) resolved themselves quite nicely.  Today, I can operate the pump one-handed, leaving my other hand free to ensure that my pants and other clothing are out of the way of the stream, when the flow starts.  While I prefer a stall when I'm in a public restroom, I've learned to use a urinal as well, as the stall is not always available at concerts and sporting events.  I no longer have any quams about operating the pump, and there is no longer any irritation of any kind, associated with having a foreign object in my body.  I also have returned to working in the office in my job without any issues.

    And........................ My quality of life has returned.  I can go out anywhere I wish, anytime that I wish, and for as long as I wish, on any given day.  I can work hard in the yard digging and hauling heavy objects around in a wheelbarrow.  I can go camping and mountain climbing, complete with wood chopping and hauling gear around.  My life today is as active, and virtually as natural, as it was before prostate cancer and the resulting prostate removal surgery and incontinence.

    Now, my current, post-implant, continence is defined as 'social incontinence'.  That is, it is not the perfect 100% continence that I had prior to prostate removal surgery.  I wear Depends (no pads), and I will always wear Depends.  I do have some very minor leakage into the Depends across a full day.  But, I do not notice it, and it is definitely not an issue whatsoever, in the course of my daily activities.  My surgeon advised me prior to the AMS 800 implant that I would be socially incontinent, by design.  He advised that he would select a cuff size and place it appropriately, so that it would minimize the chances for premature urethral wall thinning under the cuff, and this would minimize the chances of requiring additional surgery for a new cuff and new placement position on the urethra down the road.  This sounded like a good compromise to me, as I do not relish the thought of repeating this surgery, if it can be avoided.

    Regarding factors that seem to increase incontinence-related urine flow, caffeine and alcohol definately cause increases, at least for me.  I notice a slight increase in involuntary urine flow through the AMS 800 when I'm drinking a lot of caffeine or consuming alcoholic beverages.  The increase does NOT in any way limit or change my activites, as the Depends easily absorbs the temprorarily increased flow.  Again, not too much different from normal life, where these activities would necessitate an increased frequency of trips to the restroom.

    In summary, to those of you who have already gone through the implant surgery and are struggling through post-operative discomfort and general uncertainty, I recommend that you stay the course and follow your surgeon's instructions to the letter.  I am absolutely convinced that you will find tremendous value resulting from the sacrifices that you have already made as a result of your implant surgery and recovery.

    To those of you who are currently mired in lifestyle-changing incontinence and are mulling over your options, I propose that the AMS 800 is definitely a game-changer for your consideration.  I recommend that you engage a surgeon who has performed LOTS of AMS 800 implant surgeries.  While all surgeons have to start somewhere to build their vault of experience, I strongly recommend that, to the extent possible, you don't use a novice surgeon for this surgery.

    I trust that this post will provide some value to all those who read it.  In the future, I will make every effort to be more active in this Forum.

  • Trew
    Trew Member Posts: 931 Member
    Josephg said:

    6 Month Update

    Hi Folks,

    First, I must apologize for not logging into this Forum, and providing posts, over past several months.  My last update was a LONG time ago, and after reading the subsequent posts, it is clear to me that I could have, and should have, provided some value to all of the participants in this Forum during this time.

    First, let me state that Trew has been my mentor, consultant, and confidant, from day #1, when I joined this Forum.  Without him, I am not sure what actions I would have taken.  In fact, without Trew, I am sure that I would not have embarked upon this journey with the implant of the AMS 800.  I will be forever indebted to Trew for his candid replies, thoughts, guidance, and above all, providing hope for a better outcome.

    I have reviewed all of the comments and questions posted to this Forum since my last update. and with the exception of the posts relating to post-surgery pump positioning issues, I can directly relate each and every one of these posts.

    One of the reasons, though not necessarily an acceptable explanation, that I have not been active in this Forum, is that I have regained my normal life activities over the past six months, subsequent to the AMS 800 implant surgery.  This is no insignificant statement, as during this time, my prostate cancer has returned  (or, never went away), and I have undergone both radiation and hormone therapy.  I completed the radiation treatments one month ago, and I will complete the hormone treatments in less than one month from now.  So, needless to say, I have been quite busy during this period.

    The important take-away here, is that I have regained my normal life, in spite of the additional radiation and hormone treatments associated my cancer during this period.  And, while it may seem that the recurrence of cancer is not a normal life activity, the fact that since I had the AMS 800 implant, I was able to sustain normal life activities and social continence, during this challenging period.

    I spent over a year after my prostate removal surgery waiting for my continence to come back.  I was glued to my house (thank God that I was allowed to work from home, due to an understanding boss/employer and job role).  If I did not 'move' too much, my incontinence was fair to poor (2 pads per day).  However, if I went out to the store, say Home Depot, and walked around significantly, I had approximately 2 hours of movement time before I leaked through a pad AND my Depends, AND through my pants.  On those occasions when I left home through necessity, I was a 4+ pad per day person.  Clearly, my continence did not return (I'm one of ther 5%'ers, who do not regain some degree of continence, due to the scope of prostate removal surgery and the adjacent nerve tissue removal that was required), and my lifestyle changed radically after my surgery, and not for the better.   And, yes, I religiously tried the Kegel exercises for about a year with absolutely no change in my incontinence.

    As previously stated, after many consultations with Trew, and surgeons at a world-renown hospital, I decided to have the AMS 800 implant, as my lifestyle was not sustainable in its current state, if it meant being glued to my chair and/or held hostage in my own house.  Following the implant surgery, I experienced all of the post-operative effects, trials, and tribulations that you have identified in your posts.  I did not want to touch the pump, let alone tug it down into my scrotum 2+ times per day for several weeks.  I also had scrotal irritation on the inside wall where the pump contacted it.  When the pump was activated, I could barely control its operation, and many times urinated all over myself, as well as the bathroom fixtures and floor.

    BUT........................  With time and patience, and practice, all of these very minor issues (in relative terms to remaining incontinent forever) resolved themselves quite nicely.  Today, I can operate the pump one-handed, leaving my other hand free to ensure that my pants and other clothing are out of the way of the stream, when the flow starts.  While I prefer a stall when I'm in a public restroom, I've learned to use a urinal as well, as the stall is not always available at concerts and sporting events.  I no longer have any quams about operating the pump, and there is no longer any irritation of any kind, associated with having a foreign object in my body.  I also have returned to working in the office in my job without any issues.

    And........................ My quality of life has returned.  I can go out anywhere I wish, anytime that I wish, and for as long as I wish, on any given day.  I can work hard in the yard digging and hauling heavy objects around in a wheelbarrow.  I can go camping and mountain climbing, complete with wood chopping and hauling gear around.  My life today is as active, and virtually as natural, as it was before prostate cancer and the resulting prostate removal surgery and incontinence.

    Now, my current, post-implant, continence is defined as 'social incontinence'.  That is, it is not the perfect 100% continence that I had prior to prostate removal surgery.  I wear Depends (no pads), and I will always wear Depends.  I do have some very minor leakage into the Depends across a full day.  But, I do not notice it, and it is definitely not an issue whatsoever, in the course of my daily activities.  My surgeon advised me prior to the AMS 800 implant that I would be socially incontinent, by design.  He advised that he would select a cuff size and place it appropriately, so that it would minimize the chances for premature urethral wall thinning under the cuff, and this would minimize the chances of requiring additional surgery for a new cuff and new placement position on the urethra down the road.  This sounded like a good compromise to me, as I do not relish the thought of repeating this surgery, if it can be avoided.

    Regarding factors that seem to increase incontinence-related urine flow, caffeine and alcohol definately cause increases, at least for me.  I notice a slight increase in involuntary urine flow through the AMS 800 when I'm drinking a lot of caffeine or consuming alcoholic beverages.  The increase does NOT in any way limit or change my activites, as the Depends easily absorbs the temprorarily increased flow.  Again, not too much different from normal life, where these activities would necessitate an increased frequency of trips to the restroom.

    In summary, to those of you who have already gone through the implant surgery and are struggling through post-operative discomfort and general uncertainty, I recommend that you stay the course and follow your surgeon's instructions to the letter.  I am absolutely convinced that you will find tremendous value resulting from the sacrifices that you have already made as a result of your implant surgery and recovery.

    To those of you who are currently mired in lifestyle-changing incontinence and are mulling over your options, I propose that the AMS 800 is definitely a game-changer for your consideration.  I recommend that you engage a surgeon who has performed LOTS of AMS 800 implant surgeries.  While all surgeons have to start somewhere to build their vault of experience, I strongly recommend that, to the extent possible, you don't use a novice surgeon for this surgery.

    I trust that this post will provide some value to all those who read it.  In the future, I will make every effort to be more active in this Forum.

    I forgot about....

    Josephg, You said:  "When the pump was activated, I could barely control its operation, and many times urinated all over myself, as well as the bathroom fixtures and floor."

     

    Yep, that happens.  A man with a new AMS will have a few frustrating moments when his aim will be off.  I had to make a few garment changes myself getting used to the device.  But I had to make garment changes all the time before the AUS.  I remember having to walk out of a Meijer's store in Michigan completely wet- Very embrassing.  Those days are gone.

     

    God bless the AUS800 and the doctors who implant them. 

     

    Joseph, good report.  thank-you.

     

    -Trew

  • VascodaGama
    VascodaGama Member Posts: 3,556 Member
    Trew said:

    I forgot about....

    Josephg, You said:  "When the pump was activated, I could barely control its operation, and many times urinated all over myself, as well as the bathroom fixtures and floor."

     

    Yep, that happens.  A man with a new AMS will have a few frustrating moments when his aim will be off.  I had to make a few garment changes myself getting used to the device.  But I had to make garment changes all the time before the AUS.  I remember having to walk out of a Meijer's store in Michigan completely wet- Very embrassing.  Those days are gone.

     

    God bless the AUS800 and the doctors who implant them. 

     

    Joseph, good report.  thank-you.

     

    -Trew

    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  Wink

  • VascodaGama
    VascodaGama Member Posts: 3,556 Member
    PSA and Testosterone

    Thanks for the description. I did not know that the AMS800 can be attached while doing the radiation therapy. This is another excellent information to the many considering to use the aparatus.

    Can you add the test results and their timing along your treatment?
    What was your PSA and Testosterone levels at the start and at the mid (3 month) when you checked the lipids?
    What about any side medication to care for the side effects, or any supplement taken or recommnded by your doctor?

    Thanks in advance.

    VG

     

  • Josephg
    Josephg Member Posts: 318 Member

    PSA and Testosterone

    Thanks for the description. I did not know that the AMS800 can be attached while doing the radiation therapy. This is another excellent information to the many considering to use the aparatus.

    Can you add the test results and their timing along your treatment?
    What was your PSA and Testosterone levels at the start and at the mid (3 month) when you checked the lipids?
    What about any side medication to care for the side effects, or any supplement taken or recommnded by your doctor?

    Thanks in advance.

    VG

     

    PSA and Testosterone

    Hi VG,

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

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

    I added these metrics, along with my Oncologist's discussion regarding medication to reduce the severity of hot flashes to my initial answer to your questions above in the Salvage Treatment post.

    Let me know if you have any additional questions.

     

    Josephg

  • Josephg
    Josephg Member Posts: 318 Member

    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  Wink

    Salvage Treatment

    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
    ricardo1945 Member Posts: 2
    Rembrant said:

    Artificial Urinary Sphincter
    Hello harvs,
    I see your last post was in March of 2010 and I'm hoping you are still happy with your AMS800. I'm considering having the surgery and wanted to communicate with someone who had the surgery.
    I had prostate cancer and surgery three years ago, and my incontinence never improved. I go through 8-10 soaked pads a day and I tried all of the following: Physical therapy, cytoscopy, biofeedback, Kegels, exercise = no improvement and no obstructions.

    I'm concerned I might not be able to ride my motorcycle or bicycle after this surgery but
    so frustrated with the incontinence I am willing to go for it. I would love to be able to communicate with you or anyone else you might know of or other online support groups for AUS. I know there must be others who have had this surgery but can't find them in online support groups. You are the first person I have come across. Would so appreciate hearing from you.

    Thanks for any help you can provide.
    Rembrant

    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

  • tpelle
    tpelle Member Posts: 184

    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

    AMS 800 Installation

    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
    shiredvd Member Posts: 1
    harvs said:

    AMS 800 artificial urinary sphincter
    I've had mine for almost 3 years. One of the best moves I've made. Couldn't live without it.

    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.

  • Josephg
    Josephg Member Posts: 318 Member
    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.

    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.

  • vicdor
    vicdor Member Posts: 1
    AMS800 and bladder cancer

    I am considering having the AMS800 implant. I will have the surgery done at Shands Hospital,part of University of Florida, in Gainesville FL. (145 miles away) as my local urologist has not done very many. The Shands doctor saw on my record that I had bladder cancer amost 5 years ago and he said in the event it were to reoccur the larger instruments used for bladder surgery would be to large to pass through the point where the cuff is attached. The cancer that I had 5 years ago was operated on by opening the abdomen to reach the bladder. I have been 100% incontinent for over 6 months now and am 86 years old. I do not want to spend the few years I may have remaining the way I am now. I am willing to take that chance especially since after almost 5 years the cancer did not reoccur. I'm sure he knows what he is talking about but has anyone had bladder surgery done where the instruments used when up through the urethra and past the cuff? He suggested a male sling but told me in my case it would probably only be 30-40% effective. I just can't accept that and told him if I had surgery I would want to go the AUS route, said the choice was mine.

  • ricardo1945
    ricardo1945 Member Posts: 2

    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

    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.

  • Josephg
    Josephg Member Posts: 318 Member

    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.

    Had the ams 800 and no improvement

    This is the first that I've heard regarding a complete failure of the device's primary function (ability to stop urine flow following surgery, versus some mechanical or hydraulic failure).  Cuff selection (size) and cuff positioning on the urethra are critical tasks for a successful outcome.  If it were me, I'd schedule a review with another surgeon in another institution, preferably one who has performed many, many of these implants.  Worst case, he/she tells you the same thing.

  • tpelle
    tpelle Member Posts: 184

    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.

    AMS800 Didn't Stop The Leaking

    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

  • sandflylarry
    sandflylarry Member Posts: 9
    ams 800

    I had my ams 800 installed on Monday, Feb. 16, 2015. I have been healling well all week but have one question. Has anyone had an issue with the pump seeming like it is in the wrong position? It seams like it is horizontal instead of vertical like in the pictures I have seen. It also seems like it is behind my right testical causing preasure.

  • rhpruett
    rhpruett Member Posts: 2
    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.

    AMS 800 Problem

    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.