AMS 800 artificial urinary sphincter

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  • Trew
    Trew Member Posts: 932 Member

    surgery schedule/ trip

    I hope to find that out thursday. We're snowbirds and will be doing the trip Boston to Tampa again in Oct. so it almost seems that the july trip will probably not happen unless it is at the end of the month. Time will tell.  As I read the posts last night I was almost thinking of not doing it altho everyone said that the outcome was well worth the pain and inconvience of the surgery but after today, really wet day, there isn't much chance of it not happening only question is when?   What is the Divience that many people have mention in the posts??  I really have no medical knowledge.

    Divience?

    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
    spark plug Member Posts: 10
    Trew said:

    Divience?

    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

     

    surgery verses trip

    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
    spark plug Member Posts: 10
    aus surgery

    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
    jim65 Member Posts: 33
    AMS 800 Urinary control pump high

    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
    tpelle Member Posts: 184
    jim65 said:

    AMS 800 Urinary control pump high

    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.

     

    Pull The Pump Down

    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
    jim65 Member Posts: 33
    tpelle said:

    Pull The Pump Down

    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. 

    Thank you tpelle

    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
    jim65 Member Posts: 33
    jim65 said:

    Thank you tpelle

    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

    Stiches out, Surgeon says workable as is

    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.

     

  • UKSteve
    UKSteve Member Posts: 5
    Puzzling Contradictions

    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?

     

     

  • jim65
    jim65 Member Posts: 33
    jim65 said:

    Stiches out, Surgeon says workable as is

    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.

     

    Fretting

    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
    tpelle Member Posts: 184
    UKSteve said:

    Puzzling Contradictions

    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?

     

     

    Time for Activation

    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. 

  • tpelle
    tpelle Member Posts: 184
    jim65 said:

    Fretting

    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.

    Pump Location

    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
    jim65 Member Posts: 33
    tpelle said:

    Pump Location

    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. 

    Not even half way down.

    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

  • spark plug
    spark plug Member Posts: 10
    tpelle said:

    Time for Activation

    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. 

    aus install thoughts

    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
    tpelle Member Posts: 184

    aus install thoughts

    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???

    In My Case . . .

    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
    UKSteve Member Posts: 5
    So, implant "done" and I'm

    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
    spark plug Member Posts: 10
    UKSteve said:

    So, implant "done" and I'm

    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.

     

     

    life with aus?

    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
    jim65 Member Posts: 33

    life with aus?

    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.

    Spark Plug It think it is natural to be anxious

    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
    spark plug Member Posts: 10
    jim65 said:

    Spark Plug It think it is natural to be anxious

    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

     

     

     

     

    Thanks Jim,  I know all are

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

  • ob66
    ob66 Member Posts: 227 Member
    UKSteve said:

    So, implant "done" and I'm

    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.

     

     

    UK Steve---Please report

            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

  • jim65
    jim65 Member Posts: 33

    Thanks Jim,  I know all are

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

    Gel packs, Wheat bags, to keep the swelling down

    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.