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AMS 800 artificial urinary sphincter

Trew
Posts: 892
Joined: Jan 2010

One of many links with a diagram showing the device:

http://www.phoenix5.org/Basics/treatsides/incontinence/ams800.html

Is this the best device now available?

Best place to have this procedure done?

Interviews RE the artificial sphincter:

http://www.delawareurologic.com/audio/#video

I have a good friend who had bladder reconstruction after bladder cancer and he may be interested in one. Hey, some of us PC guys might be interested in one, too, so add as much info as you can about "Control Issues."

tpelle
Posts: 161
Joined: Aug 2003

Doug:  I was a back-packer into the high Sierra fishing lakes much of my life.  Only about three miles per day and not a heavy load -- about 35 pounds including the old navy two-man life raft.  Three trips per summer continued into my mid 70ies and well after RPS in 2003 and thereafter incontinence of an average 2.3 Depends pads per day.  AUS800 was installed four months ago.  While I haven't been on a mountain back-pack venture since, the AUS800 cuff securely holds to the point of not a drop of drippage even on some pretty heavy yard work, like spraying Roundup over a two acre parcel using a 4-gal Solo back-pack sprayer.   I estimate the total pack weight to be about 45 pounds at capacity.  My yard is not like mountain climbing, but it isn't flat either.  So, at least in my case, I suspect the AUS800 would perform well on a mountain climbing trip. 

The pump and cuff work great.  However, I feel tubing runing crosswise under the urethra where the cuff should be near the surface at the perineum.  Sitting on the tubing is causing pain.  It's minimual on rising in the morning, but as I sit at this computer several hours per day, getting in and out of my car, and actually anytime sitting, the pain builds throughout the day to the point of taking pain meds three times per day.  I am seeing my surgeon next Monday to see what is happening.  I'm confident that a revision is possible.

That's my story.  Hope it helps.  tpelle

dmdc
Posts: 10
Joined: May 2013

Thanks, tpelle. That's pretty positive. I hope you have similar success when you get out backpacking as you have had managing weeds at home.

And I hope the issue of the tubing is resolved easily for you.

I appreciate the experience. Any other hikers/backpackers out there?

 

Doug 

jim65
Posts: 33
Joined: Apr 2013

Day 8: Okay, it's time for me to stop whinging (whining) and turn a negative into a positive.

Negative: There are no hoses to hold on to, and I really have to dig up into my body cavity to triy and find the top of the pump. So using the pump the way the directions say, isn't working for me, just causing stress.

But I can hold my penis with one hand (aiming) and squeeze the pump with my other hand. It doesn't wiggle around all that much, I guess because the hoses are imbedded. And if I squeeze one handed it doesn't matter which way it is facing, I'm not going to hit the off button.

So for the last 24 hours I've been using the pump one-handed. Smile

jim65
Posts: 33
Joined: Apr 2013

Day 9: I've been using the pump one-handed but with my pants around my ankles--not a good look for out in public, especially if the floor is wet!

I'm getting confident, so now I'm just opening my pants, and pulling my jocks down just enough so I can hold my penis with one and, and reach the pump with the other. If I get good at this I could stand at a urinal, and not have to hid in a cubicle. (and I'm also less likely to dribble on my pants.)

I'm suprised how far I have come in 9 days. The first few day it was really hard to feel the pump, bu the scrotum is much thinner and easier to work with now.

 

ob66
Posts: 220
Joined: Apr 2010

And pretty soon you will be an old veteran with the usage of the AUS. Just look back on your posts and see how far you have come in nine days. All we be well, and you will become as big a proponent as I am of the AUS in time...Keep it up..

jim65
Posts: 33
Joined: Apr 2013

Day 11, We went away for the weekend. We drove through the bush (isolated country side). I took a leak by a tree twice. I know that sounds simple, but for the last 13 months I have always had to find toilets (and preferably handicapped toilets to dispose of the pad). It's a sense of freedom, and manliness to be able to piss by a tree. And I used public urinals (not the handicapped toilet). "one small step for a man, but a giant step toward freedom Laughing

jim65
Posts: 33
Joined: Apr 2013

Day 14

I seem to be leaking a bit more than before. Just after activation I used to use only one Tena Nu 1 pad a day, then one was getting too wet so I started using  2 Tena Nu 1 pads a day. Yesterday both pads were drenched.  So today I am trying a Tena Nu 2 pad (much thicker). This is a little disapointing. I think I leak especially when I get up to go to the toilet.

Possible causes

1. I am being more active?

2. Maybe the swelling is going down, and the cuff is looser?

3. I am drinking more fluids?

I doubt that this is something that can can be adjusted (without surgery)

I am working on PC muscles again (Kegels). Maybe I need to use my PC muscles the same way that other guys do afte RP without a AUS. (e.g. tighten the muscles when I get out of a chair etc).

I am still massively better than I was before the AUS.

4 Maybe too much coffee? (drinking 3 Nespreso Decaf Flat white last couple of days). Try Coffee free today (Day 15)

 

dmdc
Posts: 10
Joined: May 2013

Jim --

Any chance that you've "deactivated" the system with the pushbotton at the top of the pump? Even, possibly, deactivated the system with the cuff only partially inflated? I'd also guess that your thought of swelling going down making the cuff looser might be a possibility.

Thanks for reporting. I'm watching carefully.

Doug

jim65
Posts: 33
Joined: Apr 2013

Thanks Doug for the helpful question.

I think it's still on because.

1. I can still hear the swquishing noise when I squeeze the pump.

2. Usually the urine doesn't come out when I stand at the toilet (unless it's really urgent), but the urine comes out quickly when I squeeze the pump.

Now that I using the pump one-handed, I'm not touching the top of the pump any more (When I was trying to find the top of the pump I was really worried that I would turn it off, that's why I have switched to one-handed.)

I don't wait 90 seconds to pull up my pants, so there could be some dribble then, but I think it's mostly when I put pressure ont he bladder through movement, or when my bladder feels full (It doesn't hold much, maybe 200 ml)

 

 

 

jim65
Posts: 33
Joined: Apr 2013

Doug

If it was turned off, wouldn't I be back at square one, 800 ml a day, 8 big pads a day?

Jim

dmdc
Posts: 10
Joined: May 2013

Jim 65 --

I was imagining that the deactivate button might have been pressed before the cuff had completely filled, and therefor the AUS was providing only a minimal closure of the urethra. Enough to avoid the 8 pads a day, but not enough to avoid some stress problems. But if the pump is squishing normally that's not a likely situation. More important is your observation that even this "gold standard" type of treatment does not guarantee no pads at all. I don't know what fraction of AMS 800 users need pads, but, as the information you've quoted suggests, one pad a day may be as good as it gets. 

I am a one pad a day guy now, except when I'm active and walking or hiking. Then almost all my urine production ends up leaking out. My hope is that the AUS will allow me to do things that cause stress incontinence and keep me dry or nearly so under those conditions. 

Thanks for the ongoing notes. I'm watching with interest. 

Doug

jim65
Posts: 33
Joined: Apr 2013

Day 16

The sister (nurse) gave me a urine "dip test" I don't appear to have a urinary infection.

I have an appointment to see the surgeon on Monday. (that will be day 18)

Maybe this is as good as the surgeon can make it. It would be nice to know rather instead of guess.

In the mean time I am keeping "A Bladder and Pad Weight Diary" for 24 hours so I know accurately what is happening. But of course I didn't measure anything on the first days to compare with it.

Jim

 

jim65
Posts: 33
Joined: Apr 2013

AMS800 An Excellent Track Record

"More than 100,000 men worldwide have received the AMS 800 Urinary Control System. For almost 35 years, physicians worldwide have been implanting the AMS 800 as an effective treatment for stress urinary incontinence in men. The AMS 800 has been proven to be effective in the treatment of male incontinence following prostate surgery, and is considered the gold standard by most urologists. When using this device, most men are dry, with only minor leaks or dribbles of urine, usually with strenuous exercise or exertion. Most men use one pad or less per day to manage these minor leaks. As with any medical procedure, the AMS 800 is not 100% effective in all patients. Some men may require additional protection."

http://bladder-health.net/artificial-urinary-sphincter-implant.htm

I don't know that it is worth doing anything about it. I'll find out when I see the surgeon.

jim65
Posts: 33
Joined: Apr 2013

Day 20

The Surgeon says, cuffs come in small, medium and large, (and also extra small which they use in replacement operations). My urethra doesn't have much tissue around it already (maybe from PR op, I say just because everything down there is small). So he put the small cuff in, which is really too big for me!

I didn't know whether to laugh or cry! So my cuff has stress incontinence. He had my lay on the table and cough and urine came out. So I could have another operation and have the extra small cuff put in. I think it is way to soon to have another operation. Beside we are going on a tour of the USA end of September-Ocober.

The bladder is also senstive (sometimes gets  upset and wants to empty itself forcefully) so He has put me on "vesicare" a bladder relaxant,

It's just hard to imagine, you cut a guy open and say "Oh, gee this cuff is too big. What the hell, I guess I put in it anyway!!! Some "Gold Standard!" I guess in fairness, they must not have had any extra small cuffs in the operating theatre. The doctor's office is only 20 doors down from the hospital, but maybe they have to order the extra small cuffs in specially.

Where to from here? For now, I'm going to go back to the Pelvic floor exercises, and see if I can learn to control some of the leakage with that. I need to stay positive, I only  have 10% of the leakage I had before (from 800 mls to 80 mls). And I'll try the Vesicare and see if I can calm the bladder spasms down.

 

dmdc
Posts: 10
Joined: May 2013

Jim --

I am very sorry to hear that your incontinence has returned so quickly post op, though it's good that it's much reduced. That the device was not a good fit for you is very trying, indeed. Considering the discomfort attendant in the surgery, this poor result is a big deal. I've read that 25% of these AMS800's are revised in the first five years. Now we know what group you are likely to fall into. 

Best wishes...   Doug

PaulBostonMA
Posts: 3
Joined: Jun 2013

At least you found the source of the problem - it is merely mechanical.  I am also facing the prospect of add'l surgery and will do it to make this right.  It has been a long journey and I have the time and incentive to continue - though the number of things that can go wrong are significant.

Best of Luck!

jim65
Posts: 33
Joined: Apr 2013

Day 21 Maybe I should have the cuff replaced. (But it would have to be after I get back from the trip to the USA.)

PaulBostonMA
Posts: 3
Joined: Jun 2013

Hi All - Another embarrasing conversation - prostate cancer has forced me to set aside my pride on more than one occassion!

I had the AUS installed 3 weeks ago.  Like Jim65, the pump is located in a very high position.  I pulled on it twice daily as instructed by my surgeon - but it never moved down and still will not.  I am pulling on it - probably harder than I should.  In my mind, the balloon and cuff were located too far away to allow for an adequate positioning of the pump.  It is not painful, but when I get an overnight erection, the pump becomes very noticeable - it pokes the scrotum wall at the top of the scrotum and no amount of manipulation hides it, or gets it out of the way.  I am worried that it will interfere with intercourse- I cannot see how it won't.

I went to the doctor yesterday and saw the hurse practitioner - she said it was the highest placement she'd ever seen. (ugh).  She told me that I should continue to pull it down, but I am just causing myself pain during what appears to be a futile exercise.  She mentioned that the surgeon may need to perform add'l surgery to see what is going on.

 

Has anyone had this experience?  Jim - does the pump intefere with erections?  not a question you hear everyday - Im sure :-)

Thanks,

Paul

 

jim65
Posts: 33
Joined: Apr 2013

Paul

Mate, if you are having night erections, you are a very lucky man! (I haven't met anyone who has erections without using pills, and even then they aren't anything to write home about.)

Okay, when I work on an "erection" (In hardness it might be a 5 out of 10, (= very soft) and in size one inch less than before), your erection is probably facing forward, (mine is hanging down) and the pump is facing down.

The pump is pretty small compared to an erect penis (even a small one).

I suspect the pump would more likely be pushed back towards you, than into a partner's body.

As for pulling the pump.

The surgeon told me, they make a "pocket" in your scrotum, and push the pump into that pocket. Of course your body wants to heal that pocket=close it up. So once that pocket is closed up, there is no way to push the pump into it. The pocked would have to be made again. Also there is plenty of hose length, but again the body is busy embedding the hose into  the healed tissue, so once their healed up you can't really pull them back down. So the surgeon would have to try to cut the hoses free from the flesh centemeter by centemeter.

I guess you should try sex, before you have another operation. Maybe it would be extra stimulation for a partner :-)

This is all a big adjustment, our bodies just are not the way they were before. It's like getting a dent in your new car. It takes me a while to grieve about the changes, and then get used to it. I think I like the high pump now, especially because I can use it one handed. (less impressed with the leakage, shrinkage, and ED Laughing

Jim

 

PaulBostonMA
Posts: 3
Joined: Jun 2013

I am lucky in so many ways - the biggest of which is that I am cancer free 4 years after this ordeal began.  So, I start each day with gratitude - but somehow I still manage to whine!  :-). 

Thanks for the info - I was hoping that the pump would point into my body, but it points outward.  It has only been three weeks, so I am hopeful that I can retrieve enough length of hose to give it room to turn inward.

As far as nighttime erections, I was blessed with a gifted surgeon.  Despite removing half of my nerves, the remaining ones do rally.  So, this pump issue is taken in context.  Not sure why I cannot have it all!  :-)

Thanks Jim - best of luck...

jim65
Posts: 33
Joined: Apr 2013

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
Posts: 33
Joined: Apr 2013

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
Posts: 10
Joined: May 2013

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
Posts: 33
Joined: Apr 2013

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
Posts: 37
Joined: Jan 2013

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
Posts: 892
Joined: Jan 2010

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's picture
VascodaGama
Posts: 1707
Joined: Nov 2010

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

Josephg
Posts: 37
Joined: Jan 2013

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

 

 

ob66
Posts: 220
Joined: Apr 2010

It has been a long time Trew.....I recall having my AUS installed in June of 2010 and you wrestling with incontinence that was driving you bonkers for you had to abandon a very active lifestyle. Then, after much vaccilation, you went ahead and had it done (may guess sometime in 2011) and it sounds like your life of backpacking, etc. has come back to you. That, plus you are now the guru of the AMS...I think that is all so great...Like some others, I do not visit the website often, and know I should do so. But five years out it is still wonderful...I would not say 100%, but between 95-100%. There is some very mild leakage which is unnoticeable, but usually if I were to sit in a hard chair and then get up quickly, which can activate the appliance. So when I go out I wear a light Tena pad and have never had one problem.

So at the five year mark I would hope there are some users who have a longer experience than I, who can report in on how long their AUS lasted. I recall the doctor mentioning roughly a 10 year lifespan....I certainly do not look forward to replacement for the original surgery, although well worth it, was a doozy----testicles turned black and blue and swelled like grapefruit. Mobility was bad....Anyway, glad to hear you are doing so well, and if I get no response on this thread I may start a new one about AUS life span and replacement. I am so glad this is my only worry, as I a stage 3B, and have not had a trace on my ultrasensitive blood tests.

Cheers, Bob

ob66
Posts: 220
Joined: Apr 2010

It has been a long time Trew.....I recall having my AUS installed in June of 2010 and you wrestling with incontinence that was driving you bonkers for you had to abandon a very active lifestyle. Then, after much vaccilation, you went ahead and had it done (may guess sometime in 2011) and it sounds like your life of backpacking, etc. has come back to you. That, plus you are now the guru of the AMS...I think that is all so great...Like some others, I do not visit the website often, and know I should do so. But five years out it is still wonderful...I would not say 100%, but between 95-100%. There is some very mild leakage which is unnoticeable, but usually if I were to sit in a hard chair and then get up quickly, which can activate the appliance. So when I go out I wear a light Tena pad and have never had one problem.

So at the five year mark I would hope there are some users who have a longer experience than I, who can report in on how long their AUS lasted. I recall the doctor mentioning roughly a 10 year lifespan....I certainly do not look forward to replacement for the original surgery, although well worth it, was a doozy----testicles turned black and blue and swelled like grapefruit. Mobility was bad....Anyway, glad to hear you are doing so well, and if I get no response on this thread I may start a new one about AUS life span and replacement. I am so glad this is my only worry, as I a stage 3B, and have not had a trace on my ultrasensitive blood tests.

Cheers, Bob

VascodaGama's picture
VascodaGama
Posts: 1707
Joined: Nov 2010

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
Posts: 37
Joined: Jan 2013

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

vicdor
Posts: 1
Joined: Feb 2015

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.

sandflylarry
Posts: 9
Joined: Feb 2015

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.

Captpaulb71's picture
Captpaulb71
Posts: 1
Joined: Mar 2015

I have been reading all the comments here concerning the AMS 800 Sphincter.  I have a Uroligist in Boca Raton, FL that claims to have put in 100s of these over 20 years. I have full confidence in him as a surgeon.  I wear 1 to 2 pads a day, and the dripping is CONSTANT especially in the afternoon, or when I do strenuous lifting or a lot of walking (bang bang bang on the pavement go the feet and drip drip drip in unison with it).  I AM SICK AND TIRED OF WEARING THESE PADS as the quality of life SUCKS, especially when ya gotta find a bathroom to change it (or else it fills so much that it soils your clothes).  I am sure I am not saying anything NEW HERE.

So with that off my chest...I learned here about the ID bracelet...I have read up about care instructions following surgery...about sitting differently..nothing scares me, but I do have a qustion.....Since it is not turned on for 6 weeks, do I still wear a pad for those 6 weeks..in other words is it business as usual during that time ?

If any one would like to email me please feel free at captpaul71@yahoo.com.  Thanks 

jimco236
Posts: 3
Joined: Nov 2012

Yes you have to wear a pad until it is activated

sandflylarry
Posts: 9
Joined: Feb 2015

It has been 9 months since my RP.  PSA is .010 and has been since surgery.  I was using 4-8 pads a day for 7 months. Had the AMS 800 installed 2-16-15. The only problem I had was some discomfort at first from the surgery.  The device was activated on 04-01-15.  I was really wondering how this was going to be since it was April fools day but it all worked out for the best.  I am using one depends liner a day that really doesn't get wet. I am now able to do one hand operation, stand at a urinal, get out of the shower without leaking on the floor, playing golf and riding my Harley Softail.  I got my life back.  AMS 800 was the best decision I ever made.

Larry

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