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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."

Trew
Posts: 891
Joined: Jan 2010

I have no idea what that refers too.

 

I think I should say the surgery was not that painful and with pain meds, well, pain really isn't an issue.  there is tenderness, sure, but it doesn't last and now with close to 2 years of having the AUS in I don't even remember the pain.  I do remember how much I hated being incontinent and how it was destroying my life.

I was eager and excited about getting the AUS in and I have no regrets.

 

Trew

 

spark plug's picture
spark plug
Posts: 10
Joined: Mar 2013

spoke to the doc last thursday and will wait until after the forth of july for the inplant (ius) and he said there will be plenty of time to recover before going back to FL in Oct.

Found out that the DiVience (sp) refers to robatic surgery.  Everything else seem to be ok will get my psa # sometime this week.  still a little concerned about the six weeks of post surgery recovery, not looking forward to that but everyone says that it is well worth it.  just to get off the pads and inconvience of wetting. George

spark plug's picture
spark plug
Posts: 10
Joined: Mar 2013

have schudled surgery for July 27, will leave enough recovery time to return to Fl in mid Oct for the winter.  PSA # was less than .005 so that is good. really can't wait untill it is iver, hope I'm as pleased as everyone else seems to be.

jim65
Posts: 33
Joined: Apr 2013

SMS 800 Urinary Control system implanted 17 April 2013. (Radical Prostatectomy 14 April 2012, totally incontinent ever since (8 pads a day).

Surgeon told me to push the pump down into the scrotum.

The control pump is very high, I have trouble finding the top of it. (The top is just about in the body cavity). I've tried pushing it down, and now it's very sore. I've got a small package, so there isn't much room anyway. I'm a bit worried that if I don't get the pump well down into the scrotom it won't work right.

I've been looking on the net, and some of the directions say to "pull the pump down" so I am going to try pulling instead.

 

tpelle
Posts: 146
Joined: Aug 2003

jim65:  I had the AUS800 implanted on Feb 6, 2013.  During the first two weeks the scrotum was quite painful and swollen to the point that I couldn't feel the pump very well but pulled it down as best I could twice a day as directed.  At the one-week wound check the doctor told me to continue pulling the pump down twice a day until the six-week activation date.   When I saw the surgeon at six weeks, without my asking he said the pump was in an excellent position.  It's working beautifully now. 

jim65
Posts: 33
Joined: Apr 2013

Thank you so much tpell.

Yeah, I'm still really swollen and it's hard to even feal the the pump. PUlling definately works better than pushing with my thumb. When I try to pull it down, it doesn't really move much, and my reservoir wound starts to pull.

I was worries I only had 7 days to get this done. 6 weeks that reassuring.

Thanks

Jim

jim65
Posts: 33
Joined: Apr 2013

Surgeon took the stitches out today. Sitting is a bit more comfortable than it was (still using a blow up ring)

He said I probably wouldn't be able to get the pump much lower, but there is still room for me to grab it with thumb and finger on the top, and grab the bottom with the other hand and work it. He didn't seem to be conerned. He said I was still really swollen. (Perhaps when I'm not so swollen I am actually already at the bottom :-) :-)

Waking up in the night a lot to go to the toilet (not passing all that much) so perhaps I am not be emptying fully probably becuase things are still so swollen. (flow is slower than than before operation or when the catheter first came out).

Back in 5 weeks to turn it on.

 

jim65
Posts: 33
Joined: Apr 2013

The swelling is down now, but the pump seems to have gone even hight. I really have to dig to try and find the top of the pump, and it doesn't seem to move down at all. Maybe the tight underwear and pads are pushing it up. But I haven't been pulling it down twice a day (It hurt too much originally). So I will definately pull it down twice a day from now on. Three more weeks. 19 more days until I see the surgeon to turn it on.

tpelle
Posts: 146
Joined: Aug 2003

jim65:  I feel well over an inch of tubing at the top of the pump.  The bottom of the pump is dragging on the bottom of the scrotum.  The pump is easy to find and manipulate.  I think standing at the toilet naked from the waist down allows the scrotum to relax and the pump to decend.  This will all work out upon activation. 

jim65
Posts: 33
Joined: Apr 2013

Trelle, I can't feel any of the tubing even when I stick my finger up high, I can just reach the top of the pump. The bottom of the pump isn't even half way down the scrottom. Of course that's when it's warm and hanging loose. It's probably at the bottom when everything is drawn up tight. I guess the surgeon has to work with the fact that they often are drawn up close to my body. Okay, I'll try hard to pull it down, and hang in there till activation. And try not to stressLaughing

UKSteve
Posts: 5
Joined: May 2013

Hi Guys,

I'm booked in for an AUS implant on May 9th and contrary to what I read here my surgeon over here in England (apparently one of the most prolific "installers" of these devices in the UK) is telling me that he will be able to activate it three weeks after the procedure.

I had my laporoscopic radical prostatectomy in March 2012 and have been absolutely totally without bladder control ever since other than when lying down in bed (but I have to use a bottle before I sit up) so you can perhaps imagine how much I'm banking on this device to improve my life!

Should I be taking his three weeks prognosis as perhaps a bit on the ambitious side?

 

 

tpelle
Posts: 146
Joined: Aug 2003

UKSteve:  I was scheduled to have the AUS800 activated at six weeks.  Because of the surgeon schedule, it was actually two days short of seven weeks (on March 27).  I need all that time.  Three weeks would have been early in my case as the scrotum was still quite swollen.  Finding and stroking the pump would not have been easy but would have been painful.  Let us know how the three-week activation worked out for you. 

spark plug's picture
spark plug
Posts: 10
Joined: Mar 2013

I'm having one installed (sounds like a home inprovement job) at the end of July, May-be I should have schudle it sooner.  I'm not as bad as some as I usually use 3-4 pads a day sometimes may-be 5, but I'm sick of having to be aware of how wet things are or will be if I go too long. Anyway some of my concerns are,  does the swelling last the full time 6 weeks or so?  Can the surgon place the pump farther down into the scrotum or does it move up by itself untill everything heals?   Is this a one hand operation after it is activated???  Can jockey shorts be woren or are boxer shorts the way to go after everything is back to normal size (no swelling)/  Are "pantie liners needed after? does it take a long time for the ring to reclose after using the toilet??  May-be a couple of minutes or so???

tpelle
Posts: 146
Joined: Aug 2003

Spark Plug:  Based on my experience, I can answer your questions as follows:  1)  The swelling was mostly gone by the end of the fourth week.  2)  I told the surgeon I was right-handed and wanted the pump on the right side of the scrotum.  But, I don't know if he can adjust the placement lower or higher.  I do know that there was emphasis on pulling the pump down every day, twice a day.  I did that for six weeks and thought of it as a "tug."  I believe that the input/output tubes on top of the pump need to be kept low enough to hold with the left fingers to secure the pump when stroking it with the right fingers.  It appears that in my case the pump is quite low as I can feel much more than an inch of the input/output tubing.  At activation the surgeon said it was perfectly positioned.  3)  Stroking the pump is definitely a two hand (four fingers) procedure.  If you try to secure the pump itself, it slips like a testical.  4)  Jockey or boxers are probably appropriate if you don't feel the need for a liner.  I use jockey's, have been totally dry, and don't use a liner.  But that means insuring that all of the drippage is finished after urination.  I use a tissue to blot any remaining drops.  5)  I have a strong urine stream so the bladder empties in seconds following only two strong strokes of the pump.  And, with only two pump strokes, in my case the cuff has apparently closed and there is no further drippage after less than 30 seconds.  However, the surgeon told me that it could take up to two minutes.  Others say that they wait up to three to four minutes.  Never that long in my case.  I don't think I've seen mention of this, but most discussion of using the pump assumes you are in a standing position at the toilet or urinal.  In that case stroking the pump is quite easy.  It's not so easy if you are in a sitting position on a toilet, particularly if the toilet seat is not the elongated type.  Hope this helps.  Go for it!

UKSteve
Posts: 5
Joined: May 2013

So, implant "done" and I'm back home - didn't know anything could be so swollen without bursting!

Pretty painful (perhaps tender is the better word) too but I guess the old saying "no gain without pain" really rings true in these scenarios!

My surgeon is still confident in his three week to activation timetable - I'll keep updating.

 

 

spark plug's picture
spark plug
Posts: 10
Joined: Mar 2013

Haven,t seen any more comments from anyone,am I doing something wrong??? or evryone happy?? I'm having an aus put in in July and really like hearing from everyone altho am still a little concerned about the recovery period,  I know it will be a painful 4-6 weeks and everyone says that it is worth it, are there any follow up visits to Doc during this time?  I'm having it done at the VA as they started everything and are footing the bill. Have read something about a recall with the pump being bad, has anyone expericened this, it has been redesinged or something and is ok and back in use.  Has there been any accidential activaction of unit once installed? I still plan on having it done as it is no fun to try running with grandson and squarting with every step and every time I bend to pick up the ball!!  during the 4-6 weeks are they any restrictions ( driving, long drives/rides, lifting??) I'm sure the doc will say if I remenber to ask.

jim65
Posts: 33
Joined: Apr 2013

Spark Plug My AUS will be tunred on in 6 day (hopefully :-)

I've just been waiting until that happens to share, but this is what I can share so far.

I had a fortnight (two weeks) off work. I slept a lot and didn't do very much for those days. Lots of walking. It is definately not as bad as the prostatectomy was! I didn't drive the first two weeks, or not much anyway.

You're not suppose to lift anything heavier than 2 kg=4 pounds for six weeks (you don't want to rip your stitches out). Can't ride a bicycle etc.(Maybe ever? I have ordered a "split seat Hobson" with no nose, so hoepfully I can ride my exercise bike, and my regular bike again. I have started doing a few light exercixes, just trying to avoid anything that affects my core (stomach muscles).

At first I was so swollen that my penis retracted! It was really hard not to wet myself when I took a leek. I was pretty upset about that, but it was temporary, my penis reappeared after two or 3 weeks :-)

I didn't find it all that painful, I think I only took two of the pain tablets after I was home. (Did take panadole=paracetomal) whenever I felt any discomfort.). I did find it painful to try and pull the pump down, I didn't do it very often until it got less swollen.

I went back to the surgeon to have the stitches out. Probably a week or two after the operation. I think my wife drove me to the appointment. I don't see him again until the day it gets turned on.

I have done some longer driving now (3 hours).

I am still sitting on a blow up ring (afte 5 weeks) I can sit without it now, but it starts aching after 10 minutes, so it's easier to use the ring. I have put it in a pillow clase and just carry it with me, to church, the restaurant etc.

I'm still incontinent, although I am using one pad less than before. (Before operation 8 No 3 Tena Pads a day, now often 7 pads a day) I guess the cuff has made it a bit easier to control, even when it is not inflated yet.

My pump is still half in my body, (I hang very close to my body) but the surgeon said that wont  matter (we'll see).

Hope this helps

 

 

 

 

spark plug's picture
spark plug
Posts: 10
Joined: Mar 2013

Thanks Jim,  I know all are different but is does sound not as bad as imagined. Think I'll have to get a pillow

jim65
Posts: 33
Joined: Apr 2013

Spark Plug

OB66 mentioned being black and blue. I was swollen, but not black and blue.

Could be that everyone is different,

but one sister (nurse) offered me an gel pack from the freezer, just after the operation, and I kept requesting gel packs while I was in hospita, and I kept using gel packs, wheat bags and frozen peas (gel seems to hold the temperature longer, but wheat seems gentler=not as cold) when I went home until after my stiches were taken out. I used smaller size ones, you don't want to freeze your legs, bad enough freezing your nuts :-) I can't remember how long I kept them on now, maybe 10 min, until it gets uncomfortable, then you need to give it a rest for a while, and put a new one on when the pain comes back.

ob66
Posts: 214
Joined: Apr 2010

        Being three years out on my AUS, I think your current report would be very helpful to the many who are the verge of going ahead with it. On May 12 you were hurting and swollen. From my experience, today, May 24 I would be willing to bet that your swelling has gone down, if not almost gone and your incontinence is back (prior to activation). The swelling usually makes the incontinence go away to the point where you ask yourself why you needed the procedure, but with time as it goes down, so does the incontinence return, and you cannot wait for activation. 

        If I am correct in my assessment, you are soon getting to the point where time has made you feel that the surgery was endurable. The next big step is the activation, and you will see that all is more than worth it. This goes for all of you facing the surgery in the immediate future.

        Go back and reread some of the long threads on AUS recipients. The best is those involving Trew, for he could not even have it for an exteded period of time and suffered horribly (read his posts) both physically and psychologically from incontinence. It impaired every aspect of his life. Now he is the #1 advocate of the AUS. His chronology would be most helpful to the biggest doubters.

       My experience was a bit more traditional and easier. I will not kid any of you though. The pain and swelling for two to three weeks is "grapefruit big while black and blue" while being in the eight to ten range. With that said, it is one of the best things I have ever done. 

      I don't go online here regularly, but do from time to time, because of the gift I have been given with the AUS, I feel the need to share it's benefits.

Bob

UKSteve
Posts: 5
Joined: May 2013

You're so close to dead right it's almost frightening!

The thought of what's in store for next Thursday and the rest of my life is what has kept me going through some of the most uncomfortable times I have ever experienced these last two weeks.

It's quite funny how the mind works - last year when it was made clear to me that incontinence was something I had to accept (at least for a year) I kind of thought "oh well, that sucks but I'm alive so I've got the better option", then, as the year progressed I found myself putting that sense of relief behind me and getting really frustrated by not even being able to go to the showers at the gym without someone asking why I'm wearing a leg bag (I've used Conveen sheaths during the day and incontinence pants and a bottle at night for the last ten months rather than pads which I really couldn't get on with).  Then I finally hit the twelve month deadline and my oncologist agrees to refer me to the AUS specialist and I am like a kid with a new toy when he agrees to carry out the procedure in time for me to be "dry" when my wife and I travel to Morocco to celebrate her (fairly significant) birthday next month.

Then the last two weeks of pain and discomfort - but strangely I haven't gone down the "better of the options" route this time, I've just lived hour by hour knowing that some of the best brains in creation have created a solotion to my (and many thousands of other guys of course but they all come a distant second in my reckoning!) problem and counting the days down to activation.

So - all being well I'll report further later this week.

 

UKSteve
Posts: 5
Joined: May 2013

You're so close to dead right it's almost frightening!

The thought of what's in store for next Thursday and the rest of my life is what has kept me going through some of the most uncomfortable times I have ever experienced these last two weeks.

It's quite funny how the mind works - last year when it was made clear to me that incontinence was something I had to accept (at least for a year) I kind of thought "oh well, that sucks but I'm alive so I've got the better option", then, as the year progressed I found myself putting that sense of relief behind me and getting really frustrated by not even being able to go to the showers at the gym without someone asking why I'm wearing a leg bag (I've used Conveen sheaths during the day and incontinence pants and a bottle at night for the last ten months rather than pads which I really couldn't get on with).  Then I finally hit the twelve month deadline and my oncologist agrees to refer me to the AUS specialist and I am like a kid with a new toy when he agrees to carry out the procedure in time for me to be "dry" when my wife and I travel to Morocco to celebrate her (fairly significant) birthday next month.

Then the last two weeks of pain and discomfort - but strangely I haven't gone down the "better of the options" route this time, I've just lived hour by hour knowing that some of the best brains in creation have created a solotion to my (and many thousands of other guys of course but they all come a distant second in my reckoning!) problem and counting the days down to activation.

So - all being well I'll report further later this week.

 

spark plug's picture
spark plug
Posts: 10
Joined: Mar 2013

Hi everyone,   First question how long before you could tale a long (Boston to Atlanta) by car.  You think 2 1/2-3 weeks would be ok if I didn't drive any or much??

Also Jim mentioned something about using ice bags & wheat bags to ease the swelling, did it work enough to make it woth while???  And you mentioned something about a "hobsob bike seat" if you have more info I'll and I'm sure others would appreaceate it.  What are your thoughts about a recumbunt (SP?) bike???  Think they would be less painful???  Right mow the focus is may-be I can get the surgery pushed up early or may-be latter.   We ar leaving on the 6th for Fl for two weeks so time is really tight.

again any thoughts or feelings/experiences upon the travel time.  Thanks  Spark Plug

jim65
Posts: 33
Joined: Apr 2013

Day 1 Activation Day (30 May 2013)

I just feel so much better about myself.

Dramatic change the amount of in urine in pads
Before AUS operation urine volume in pads 860 ml (29 oz)
after AUS operation urine volume in pads 640 ml (21 oz)

after AUS turned 10:00 am on 18 mls  (o.6 0z) in the pad till bed.

Over night 8 mls  (0.27) in the pad

(Bladder holds about 200 mls (6.7 oz) at present.)

First time I used it, the urine gushed out and  I got my hands all wet,
but I got better from then on.
I used the pump about 9 times yesterday. (first day)

At present I only need to squeeze the pump once (maybe when I bladder holds more I'll need to do it twice).

I have also discovered that once I sweeze the pump I can hold the urine with my PC muscles till I'm ready to release.
So when I got up this morning I could hold on until I got a measuring cup ready.
In the morning 200 mls. (that felt very full) So eventually I hope I can hold a bit more than that.
I only got up once in during the night too (have been getting up 3 times) so that's a great improvement too.

I asked the surgeon about the pump being so high. He said the surgeon makes a pocket in the scrutom, but if the pump moves up, then the pock heals (closes up) so there is no way to get it lower.

But using it 9 times yesterday, it seemed to get a bit easier to reach as the day wore on. I still have to feel carefully to find the flat side of the pump. The Dr says the tissue should thin out a bit as time goes on.

I was using 8 Tena Men's number 3 pads (8 pad cost $12 in australia, so spending $3,500 a year in pads!) ($12 a day)

I think I'll be using one or two Tena Men's number 1 or 2 pads a day.  About $1.20 a day. ($350 a year)
I hope to start Prostate Support Group in Balaklava (with PCFA Prostate Cancer Foundation of Australia)
and do the training to be an Ambassador (a speaker at Prostate Awareness meetings)

dmdc
Posts: 10
Joined: May 2013

Hi, guys. I'm 68 planning an AUS. I am 28 months post robot assisted laporoscopic radical prostetectomy for a Gleason 8 cancer identified on biopsy. I was totally incontinent immediately after the procedure, using condom catheters and then a urinary receptacle called afex (http://arcusmed.com/).  I was working at getting my head around the idea that I'd be using a leg collection bag for the rest of my life, and would have to worry about leaking and wetting clothes an inopportune moments. I was highly motivated for improving my situation and engaged in pelvic floor rehabilitation, biofeedback training, kegal exercising, and electromagnetic stimulation of pelvic floor muscles. I tried a couple varieties of penis clamps which had to be tightened to the point of signficant discomfor and sometimes swelling in order to avoid leakage when I was out and about. I got a lot of support, and over the first six months I was finally able to graduate to pads. Over the next year I got down to one pad in 24 hours with almost no leaking at night, and only 15-60 cc during the day, so long as I was mostly sitting at my desk. I'd say that now, two years post surgery I am "socially continent," meaning I can go through a typical day without others being aware that I have an incontinence problem. 

But my life is not at a desk. I'm nearly fully retired, and my recreation, my exercise for health, and my peace of mind revolve around bicycling and hiking and camping. I love being outdoors. Before the prostate surgery I did a 4,000 mile bicycle ride across the country camping along much of the way. I'm presently planning a 2,000 mile hike along the Appalachian Trail, and cannot imagine how, given sanitary conditions along the trail, I could manage pads or catheters. I've talked to my urologists and they first recommended a bulking procedure. That appeared to be a little successful, and may be responsible for my minimal leakage during a non-stressful day. But if I go hiking, the stress of hours of walking, climbing, walking down hills and so on, pretty much totally overwealms my limited continence. A sling procedure has been suggested, but the surgeons are afraid that if they make the sling tight enough to provide continence under high stress hiking and climbing situations, I may have difficulty urinating most of the time, and may sometimes require catheterization because of obstruction. They've agreed to do an AUS. I have not picked a surgery date, but about two months out seems likely.

I have really appreciated reading on this thread about the realities of the post-op period and the recovery during the first month. And I'm gratified to hear that activation has restored continence to many. My hope is that activation will provide me with continence under the stressful conditions of backpacking in mountainous country.

I'd be particularly interested in the experiences of other men who are similarly active outside the house. And I'd like to hear from people who are 5 to 10 years out about whether they've required any revision of the device.

It's going to be an adventure. Thanks for the help.

Doug 

jim65
Posts: 33
Joined: Apr 2013

Doug, yesterday when my AUS was activated, the Dr said "No bike riding" or similar things. I have ordered a noseless bicycle seat. He thought that would be okay.

Jim

jim65
Posts: 33
Joined: Apr 2013

Hmmm

I was trying to go a bit longer, until I really needed to go. (I felt like I was leaking, all though the pad isn't all that wet.)

But when I grabbed the pump, it started shooting out before I squeezed the pump.

I didn't expect that to happen.

It's happened twice today (each time I had drunk some coffee--a bladder irritent.)

Okay, so maybe I can't let the pressure build up too much (or have to be careful with coffee etc-- :-( I was looking foreward to being able to drink real coffee--not decafe)

 

jim65
Posts: 33
Joined: Apr 2013

Day 2 (31 May 2013)

I'm still sitting on a blow up ring.

I can sit for a short time without the ring (15 min)

but then I can feel the pump digging into me, and the pereneam (where the stiches are) feels bad.

Maybe this will get better later?

jim65
Posts: 33
Joined: Apr 2013

Last night I slept without jocks(underpants) or a pad for the first time in 13 months.

I figure 8 ml isn't enought to worry about.

There was no sign that I leaked over night.

jim65
Posts: 33
Joined: Apr 2013

This is day two.

It is a lot harder to feel the pump today. Which is the flat side. Perhaps I am a bit swollen from using so many times yesterday. Hopefully it will settle down.

Boy I wish the pump was lower (not half in my body).

I wonder if the surgeon could give me a local and go in the side of the scrotum, (like a vasectoby) and make a new pocket and pull the pump down.

But I can't move the tubes at all. I guess the body has healed around them now. :-(

Jim

dmdc
Posts: 10
Joined: May 2013

Jim --

 

I hear that you're still a bit tender, and that the pump is a bit high and hard to deal with. Were you asked to or able to do the twice daily tugs on the tubing that others have mentioned?

Hope you become a pro at uting the machinery quickly.

 

Doug

jim65
Posts: 33
Joined: Apr 2013

(7 or 10 days later) When he took the stitches out, it was already high then. He said I should try to push it down twice a day, but he didn't think it would move much.

I wish he had told me to do it when I left hospital, but on the other hand, it was still so sore when he took the stitches out, it was hard to do.

(at least I don't remember him telling me to pull it when I left hospital).

I was wearing tight jocks (underpants) to hold the pads on. Maybe they pushed it up??

I'm not really sore from the operation. Just where I have been squeezing the pump is a bit thick and tender. It was easier to feel the sides when it was activated, so I expect when it calms down (the thickness goes away) it should get easier.

I've done it one handed sitting on the tolit twice. :-)

UKSteve
Posts: 5
Joined: May 2013

So - three weeks to the day after my implant my surgeon activated the AUS at 11.00am and pointed me at the bathroom and said I could shower and go home at 14.00!

Quality of life was immediately improved infinitely (and I use those words carefully, thoughtfully and with deep gratitude!) - were I a praying man I would be seeking the words to thank God for creating both the geniuses who invented and those who "install" these wondrous devices!

 

jm65  - your first post after activation was as wondefully positive as mine but, worryingly, you seem to be less impressed as the hours go by (although still confident).  Please keep the faith, it's such a huge change in life-style after the months of suffering (and again I use that word carefully) that incontinence imposes that any tiny little deviation from the first joyful use of the new skill will inevitably seem like a negative but please believe me, it will settle down soon and be just a normal technique that you can take for granted.

My wife took me out to a bar for a few beers to celebrate last night (Friday) and I even managed to use the urinal (OK there was nobody else in the restroom at the time but it was still the first time for fourteen months so it was quite an adventure) - I am so happy again it's difficult to believe that the last four years or so actually happened!

I've already taken steps to get involved in some sort of mentoring (but I don't think that's the right word) programme at my local health centre and I'm more than happy to communicate by e-mail with anyone who has doubts or needs re-assurance.

 

 

spark plug's picture
spark plug
Posts: 10
Joined: Mar 2013

UKSteve,  That sounds good but only 3weeks to acivaction???  May-be they do it differently in the UK.  Glad to hear eveything is going find.  I changed my date to Sept 6th from July 27 because of family happings (wedding, babtisum, dedication, it's been a bad/busy summer) and I am/expecting a 6 weerecovery from what everyone else has been saying. I ho'm closer to your results.

JIM it's good to hear that you can use it with only one hand, that must make it nore convient.

What is the length of stay in hosp after the surgery??  1, 2 days??

 

 

Please keep us posted to your experience

thanks  Spark Plug

 

jim65
Posts: 33
Joined: Apr 2013

I stayed in hospital 36 hours.

jim65
Posts: 33
Joined: Apr 2013

Day 7 (5 June 2013)You're right.

I think I am stressing too much. (Day 4 of using the AUS)

1.  The surgeon said to find the flat side and squeeze it. I have decided that trying to find this flat side is just too hard and it doesn't really matter. The bottom of the pump is soft. It doesn't matter where I squeeze it, it works

2. I've been sitting without the blow up ring all day long. Minimal discomfort.

jim65
Posts: 33
Joined: Apr 2013

Day 4 (2 June 2013)

My core muscles were too weak after no activy for 6 weeks (hard gettomg out of bed).

I don't think it would be good to go back to the same level core exercises that I was doing before (too big a jump).

So I found some post abdominal surgury core exercises. I have done them for 4 days. Heaps easier to get out of bed, and my gut is tightening up. :-)

http://www.livestrong.com/article/123582-abdominal-exercises-safely-postabdominal-surgery/

Now I am slowly going to build back up to where I was.

jim65
Posts: 33
Joined: Apr 2013

Day 7 (5 June 2013)

Just like the surgeon said, the scrotal skin (and or tissue) has gotten thinner and it is easier to squeeze the pump.

Day 7 of using the AUS.

jim65
Posts: 33
Joined: Apr 2013

Today I turned the shower on, and suddenly felt the urge to go, and it started squiring out. I had not touched the pump yet. I put out at least 50-100 ml. I didn't empty my bladder first. It came out faster once I gave it a pump.

Note to self. Don't put the AUS under too much pressure, could be embarassing.

dmdc
Posts: 10
Joined: May 2013

Jim -- Thanks much for your day by day, blow by blow description of your experience. The Running Water Trick sounds like what would happen if a guy tried to urinate without opening the cuff with the pump. The bladder pressure would overcome the AUS. 

My particular interest in the AUS is staying mostly dry while engaging in high activity exercise like hiking with a pack. I'm scheduled for AUS placement in early July but wonder if I'll find that the cuff is not up to keeping me mostly dry during that kind of stress. I only use a pad a day, and then not soak the pad, when I'm not out and about, but even a five mile walk around town will soak my pads, and I'll likely need to swap them out during the day, if I'm out backpacking. It's that extra use of pads I'd like the AUS to help me avoid.

Anyone with experience in this area?  Thanks.

Doug

tpelle
Posts: 146
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: 214
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

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