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AMS 800 artificial urinary sphincter

Trew
Posts: 891
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: 176
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: 225
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



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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: 103
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: 891
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: 2305
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: 103
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: 225
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: 225
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: 2305
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: 103
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: 9
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

dadspet
Posts: 4
Joined: Mar 2017

I've been struggling with complete (75 male) incontinence for several months now and scheduled for an Artificial Urinary Sphincter AMS800 in early April 2017. I've had external beam radiation and seeds for prostate cancer about 2001 and Bladder cancer with BCG treatments in 2015. Currently I'm cancer free but in 2016 a urinary stricture developed and I had to self cath several times a day. This wasn't a pleasant experience but then magically the stricture disappeared and I became incontinent. With the stricture issue several urologists were recommending bladder removal but when I became incontinent my urologist then recommended condom catheters and or use of a clamp. After a lot of trial and error I finally found condom catheters that stayed on and got me free of wet pads. The condom catheters really work with some drawbacks and inconveniences but are clearly a lot better than wet pads (or self cath) . They could be a solution to my incontinence issue but the urologist recommended the AMS800 which seemed like a better solution than even the condom catheters. After reading this board I think have under estimated the AMS800 operation and the associated recover pain, giving me second thoughts on following through with the AMS800.

 

After reading the boards about AMS800 experiences, I'm not sure I found anyone with incontinence who has been using condom catheters and clamps for control before their AMS800 placement.

 

Have I missed something ?

 

If anyone out there has gone through the condom catheters phase then into a AMS800 please share your thoughts on going through with the procedure.

 

My Urologist has said that in the 8 week recovery period he didn't advise using a condom catheter for the incontinence. This sure seems like a real problem since I will be going through 8 or more pads a day I'm sure.

 

As I mentioned above I'm pretty sure I underestimated the procedure and I'm now real concerned about the pain in the recovery period.

 

Thanks for any comments you wish to share with me. 

RobLee
Posts: 29
Joined: Feb 2017

I have been using condom catheters since soon after DaVinci six months ago, and am now scheduled for the AUS in May.  Pads/briefs/diapers just do not hold enough fluid. I need to change every 30-60 minutes during the day (that slows down at night). It took a while to find which cath's I like best, and now it is all pretty much routine. But I would love to get back to some sort of normal.  My urologist has not mentioned anything about not using condom cath's (CC) during the recovery period. So this is news to me. My uro therapist (kegel coach) said she's only seen one other guy who used CC's. There just is not a lot of info to be found out there.

We have a lot planned during the upcoming months (other cancers/issues) so I don't want any surprises. I am very active on cancer-forums.net but no one on that board has any experience either with CC's or AUS. I find this board (cns.cencer.org) poorly organized and more difficult to navigate, but there is more info here on those topics. My concern is most of the posts here are from more than five years ago. A lot can change in that time.

Anyway, right now my incontinence is holding up salvage radiation for the residual cancer from my RP (T3b w/SVI). The RO says it is better to have the AUS put in before IMRT begins, then that continues every day for two months. So everything revolves around this procedure. Very tight window. I wish you good luck on your procedure next month. I hope all goes well, as I will be right behind you.

 

RobLee
Posts: 29
Joined: Feb 2017

Dadspet asked "After reading the boards about AMS800 experiences, I'm not sure I found anyone with incontinence who has been using condom catheters and clamps for control before their AMS800 placement. Have I missed something ?  If anyone out there has gone through the condom catheters phase then into a AMS800 please share your thoughts on going through with the procedure.  My Urologist has said that in the 8 week recovery period he didn't advise using a condom catheter for the incontinence. This sure seems like a real problem since I will be going through 8 or more pads a day I'm sure."

(I posted a reply to this a few days ago and got a message that it would be reviewed by a moderator. I have checked every day and it still has not appeared, so I can assume it has disappeared into cyberspace. I will now try to remember what I said that post.)

I have been using condom catheters since my DaVinci RP six months ago. At first I tried pads and briefs but they quickly become soaked and irritate my penis and groin. While shopping online for better pads I was directed to condom caths by an ad. It took a while to figure everything out and find what works best, but by 3 months out had a routine that has worked very well. I try to go without cath for a day or two each week to allow myself to "dry out" and my skin to recover but the wetness from the diapers is definitely the worst. I go thru 8-10 diapers on these cathless days, each weighing around a half pound of urine. I can hold my uring when sitting or laying down and can go all night without getting up to pee, but when on my feet I just leak like a faucet.

I had physical therapy which consisted of kegel training and electro stim and there was some small improvevment, but still I am only about 50% continent. The therapist said she only had 1 or 2 other patients who used CC's. There's not a whole lot of information out there, and as I said, had to figure everything out for myself (but then I am an engineer and do that for a living). I am now considering having the AMS800 AUS surgery and that is how I found your post. First let me wish you good luck with your procedure and recovery, which at this time appears to be next month.

I had G8 prostate cancer and am now T3B with SVI, and was supposed to begin salvage radiation this month, however my RO recommended waiting until I gain further control over my incontinence. He said he has seen improvement up to ten months. I am currently on Lupron to keep the PSA down. I have spoken with several urologists and they say there is NO WAY that my incontinence would improve significantly from where I am now, and recommend that I proceed with the AMS800 so that it can heal and then begin RT as soon as it is activated.

Not one of these doctors - none - ever mentioned not using condom cath's while recovering from the AUS surgery. I am curious if there was any explanation given to you. I am like you in the same boat... 8-10 pads per day and much irritation, or stay with the CC's and hopefully recover normally from the AUS placement.

Again, good luck with your surgery, and please keep in touch.

Banff's picture
Banff
Posts: 2
Joined: Apr 2017

Hi Rob. I'll be having a urethroplasty with grafts procedure to repair a 6 cm long urethral stricture. My doctor has warned that if successful, this repair will, ironically, make my degree of urinary incontinence much worse. I may eventually have to try the AUS, but if can find a way to manage without it I would prefer not to have an implanted device. Of course, time will tell. For now I am looking into external condom catheters, and was encouraged by your comment that "While shopping online for better pads I was directed to condom caths by an ad. It took a while to figure everything out and find what works best, but by 3 months out had a routine that has worked very well." Could you share the brand of condom cath or system you settled on, that has worked out for you? I'm a bit overwhelmed by all of the different brands and types that I see online, and would be greatly helped to hear from someone who has found a condom cath and accessories that work well. Thank you very much in advance for any advice and shared experience that you can offer!

RobLee
Posts: 29
Joined: Feb 2017

Thank you Banff for your interest, and I hope everything goes well with your surgery. Before going into the subject of condom caths, I should probably say (not a medical authority) but I would guess that a urethral graft might possibly rule out the AUS at least until your urethra has healed completely. Urethral erosion is the number one problem with the AUS, and is probably my greatest concern about having this procedure. I'm guessing that once the damage is done, it's done, and I don't know if there are any options after that. Nonetheless, I hope your outcome is positive and the graft improves your condition.

About the condom caths (we - you or I) should probably start a top level thread in the PCa forum here so that anyone looking for cath info could find it here, without searching thru the AUS thread. Anyway, the best caths I like are called Freedom with Aloe Vera. They are made by Coloplast and you can get them on Amazon for I think $1.60 each... you can buy boxes of 30 or 100, but I ordered them ten at a time while I figured this stuff out. The best leg bags also from AZ are $2.50-3.00 each ... 1000ml Rusch Easy Tap. They come with elastic straps but I have been using a velcro strap bought separately (still the same one after six months). The bags you can rinse out and occasionally bleach, but a week or two is as far as I trust them.

The problem with the condom caths is it seems each mfr has staked out a size range, and they sell 3mm larger or smaller, so if you are between sizes you may have to live with one that doesn't fit so well if it is better than one that fits well but a brand that you don't like. The Freedoms also come in several varieties without Aloe but I found the Aloe ones generally bahave better all around. Read the reviews on AZ and you will see what people like and dislike about each. The Freedoms come in 25mm (way too small for me) 28mm (a little too small) and 31mm... that's what I wear, thought they wrinkle a bit... 34mm and probably larger are also available.  Other names are Bard "Spirit" and "UltraFlex" in sizs 29mm and 32mm. The only brand I've found at 30mm - which actually fit me best - is Conveen Optima, but they are again a different design from the Freedom Aloe. I find I prefer a thicker condom rather the thin flexible ones.

I've been using these now for seven months. I even sleep with the bag beside me (even though I am dry at night) because it is easier than removing the cath or clamping the hose at night. When I need to pee in the middle of the night I usually disconnect the bag and just let it go from the end of the hose into the toilet. Occasionally I will spend a day using diapers, but the wetness is far more irritating than anything I've experienced as side effects of the condom cath. My femur (thigh bone) is longer than most guys by a few inches... hard to buy jeans that fit. I have extended the length of the cath tubing by cuttin a four inch section from a discarded cath hose so I actually run 22" (each bag comes with a 18" hose). My biggest concern about the leg bag is the possibility of the strap causing a blood clot. A lot of the time I use a large safety pin to pin the bag to the inside of my trouser leg and just leave the strap loose.

Well that's about it. I think this probably would make a good thread topic in case other guys might want to throw in their experiences. Again, good luck with your surgery. My AUS goes in May 15th if all goes well.

Banff's picture
Banff
Posts: 2
Joined: Apr 2017

Thank you so much, RobLee, that is extremely helpful information!

And the very best of luck to you sir, with your upcoming AUS implant.

I have the same concern that you express, about the AUS cuff and possible urethral erosion after my upcoming urethroplasty with a double graft (both a Ventral Buccal Mucosa Graft and a Gracilis Muscle Flap, the muscle flap being for the purpose of its capillaries providing a blood supply to urethral tissue made ischemic by radiation). This is one of the main reasons why I first want to see if I can somehow manage the incontinence by other means, rather than going right to the AUS. My physician, Dr. Alex Vanni of Lahey Clinic in Burlington, Massachusetts, says that he believes my incontinence after the surgery will be very difficult to manage without AUS, but I'm going to find out before making such a big decision. 

I found a brief demo video on using the Freedom by Coloplast, and found it odd that the fellow made it a point to say that he doesn't recommend it because the condom is 100% latex and thus the skin can't breathe, and he would suggest using a silicone-based unit, such as the Freedom Clear. But clearly the latex hasn't been a problem for you. Here is the link: https://www.youtube.com/watch?v=zyV38o6iE94

Have you found that it helps, as the video suggests, to apply a "skin barrier" wipe or spray before putting the condom on, to protect the skin and provide some "tackiness" to help it stay on? Or does the aloe in your preferred brand take care of that for you?

Your tips including extending the cath hose from 18 to 22 inches by attaching it to a 4-inch length from a discarded hose and using a large safety pin to pin the bag to the inside of your trouser leg and just leave the strap loose, helping avoid worry about blood clots are exactly the type of real-life practical advice from a user that I was hoping to find. That is very helpful to all.

How did you couple the 4-inch length of tube to the 18 inch tube that comes with the leg bag? Did you have to find a hose with a slightly larger or smaller circumference so that one would fit inside the other? Or did you use something like a small hose clamp? My apologies in advance if this is a dumb question.

You also make a good point about starting a dedicated thread on condom cath experiences. This is all currently new and a bit (more than a bit, who am I kidding?) overwhelming to me, so I'm not sure I'm ready to start a thread right now, but hopefully soon I may feel a bit more comfortable posting here and feeling as if I know what I'm doing.

Thank you again, and I, along with, I'm sure many of the people your posts have helped immeasurably, will keep you in our thoughts for your big day on May 15. All the best to you, RobLee.

RobLee
Posts: 29
Joined: Feb 2017

Sorry for the confusion. All the cath's I've used are silicone. No allergy to latex, but I know that latex has its own odor and so decided against it. The Freedom caths I use are "Freedom Clear Advantage Aloe Vera" ref 2330140. The stock #'s for bulk packs are 6300 and 6330. I allow myself one or two "dry nights" each week to allow my skin to dry out. On those nights I stuff a washcloth (brown or yellow) over my crotch between my thighs to catch any leaks. I have not had any issues with skin wetness. Actually, on days when I use diapers or pads, the constant wetness causes more irritation than anything I've experienced with the CC's.

I wear the CC's generally for 36-48 hours. I've found 2 days and one night, or two nights and one day works well. If I try to stretch one CC into three days then it ends up with a leak.  And I'm afraid that if I replaced them daily then maybe I might end up peeling skin off, though my doctor says that should not be a concern at my age, maybe if I was much older. The adhesive is quite strong.  I remove the cath in the shower.  The trick is to pull the skin away from the cath gradually, rather than trying to peel it off. I lather up and let the suds work on the adhesive, gently working around until you can slip a finger inside. I have tried two different brands of "prep" pads. One brand of cath "conveen" seems to need them, but the freedoms do not, so I do not use them. The real trick is not so much the caths themselves but what to do after the shower, drying off and trying to control the dribbling before applying the next cath.

Each leg bag comes with a new 18" tubing. The tube has a nipple on one end. The nipple goes into the end of the CC and the free "open" end plugs into the nipple on the bag. To get the extra 4" tube I just cut off the nipple end plus 4" from a used tube. So it's "female" condom cath to male end of 18" tube, female end of 18" tube to male end of 4" tube, female end of 4" tube to male nipple on the bag. As you've found, just doing internet searches and visiting websites and you will stumble upon useful tidbits here and there. Also visit distributors and online suppliers sites.

Your urinary problem and the treatment sounds daunting and quite scary. Mine was just a rountine prostatectomy that got a little wacky. I imagine you must feel very much alone in this. I can only guess all that must be going thru your head as well as your emotions. I hope you have a good support structure... wife, family, or at least close friends. Feel free to ask for whatever you need. And good luck with everything.

 

 

tpelle
Posts: 176
Joined: Aug 2003

For ten years after prostate surgery in 2003 I leaked and used an average of 3.2 pads per day.  Then, at age 81, I decided to do the AUS 800 implant.  It was scary and during the six week recovery period there was some pain, mostly relieved by medication.  I was in the hospital for two days.  Starting on the fifth day post surgery I walked a mile almost daily using the mobile cateter bag.  AUS worked beautifully for 17 months then the reservoir developed a pin hole sized leak and all of the hydraulic fluid escaped.  A few months later at age 83 I had the failed AUS replaced.  This time the post surgery pain and scariness was much less since I had experience it before.  I saw my surgeon yesterday for the annual follow-up visit and was able to report that the system was working well.  No problems except a small drip occasionally when I sit on an irregular surface.  The light Poise liner I use is seldom stained.  tpelle

Josephg
Posts: 103
Joined: Jan 2013

In case that you did not already stumble across my experiences with the AUS 800, please review the links below.  For me, it was a life-changer.  By that, I mean that I got my 'normal' life back after I had the implant.

http://csn.cancer.org/comment/1324584#comment-1324584

http://csn.cancer.org/comment/1326323#comment-1326323

http://csn.cancer.org/comment/1339326#comment-1339326

http://csn.cancer.org/comment/1339561#comment-1339561

http://csn.cancer.org/comment/1344785#comment-1344785

http://csn.cancer.org/comment/1413239#comment-1413239

John A's picture
John A
Posts: 1
Joined: Feb 2017

I'm in the consideration stage and have an appointment next month to have a bladder capacity test. I had brachytherapy (radioactive pellets) about 10 years ago and remission ended in early 2014. The radical prostatectomy was highly problematic because of the prior radiation searing parts of the surrounding tissue to the prostate. Consequently I had some complications after surgery that lead to two more surgeris to open up the neck of the bladder. I had multiple UTI's and once my bladder closed up completely. The surgery to repair that has left me with no control at all.

This forum has been very helpful in my decision making process. Most of my questions have been answered. 

One small question remains. I fly occasionaly and, since the AMD 800 relies on pressure to operate, I wonder if the cabin pressure at altitude has any effect on the device.

Josephg
Posts: 103
Joined: Jan 2013

I've had the AMS 800 implant for over 4 years, and I've flown several times during this period, without any issues.  The AMS 800 operates, using a pressure differential between the pre-pressurized saline solution contained in the implant, and the surrounding ambient air pressure.  The 'closed' state is actually at the pre-pressurized pressure of the implant in the cuff, and when you want to open the cuff to urinate, the pump actually reduces the pressure in the cuff, moving the saline solution back into the bulb reservoir, reducing the 'squeeze' or the urethra, thus allowing urine to flow out of the bladder.

dadspet
Posts: 4
Joined: Mar 2017

Since my Dr said no Condom  catheters (or NO clamp for sure) until after the AMS800 is activated  (8 wks in my case due to radiation damage requiring long healing period ) I've been very concerned and again questioned him why not? His answer the first time was he was concerned about backflow ( which I guess is the urine not flowing into the drainage bag, due to a kink or some other issue, and backing up into the surgery areas ?) and then a possible infections. This time he said he didn't want anything to disrupt the healing process and he had a previous patient who used a condom catheter and had to have the AMS800 replaced in a very short period of time before the recovery period was over. This is a major concern of mine and I probably will address this with him again next week as we finalize test results before the procedure the week after.  The major concern in my case has been bladder cancer and reoccurrence so I've just gone thru another cysto and bladder biopsies along with a ct scan and tomorrow a ultra sound of my kidneys and more blood work. I am so sick of all the time I've spent getting tests  but I think I'm at a point if all tests are ok I plan on going thru with it. Not a easy decision for me and I may change my mind before its over. I hope  on updating the BB on my progress. 

RobLee
Posts: 29
Joined: Feb 2017

Thank you Dadspet for the updated info on the AUS and condom caths. First, let me wish you good luck with your upcoming procedures...  I have relied heavily upon condom cath's since my RP surgery last summer. And now my incontinence is so severe that it has delayed the start of the radiation therapy that originally was to start this month.  Your doctor's concerns sound legitimate, so perhaps I may need to alter my practices a bit after having the AMS800 implanted.  My doctor has advised that the AUS should be implanted before starting radiation, so the healing time (plus additional healing time if any revisions are necessary) will also delay the start of my RT. It sounds like you've been thru quite an ordeal already. Do I understand correctly that you will have the AMS800 implanted in two weeks? You are definitely right, this in NOT an easy decision. There's a lot that can go wrong, and though most men seem to be happy with the outcome, once it's done it's done and we can only hope for a favorable outcome.

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