AMS 800 artificial urinary sphincter

13468918

Comments

  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    hightide said:

    AUS nfo
    Hey Tom, Thanks for the welcome and your input on my questions. I am just a little nervous about how things will go when I go to get every thing turned on in Aug. Don't want them doing a lot of adjusting if you know what I mean.

    Glad to hear that you are doing well and that motorcycle trip sounds awsome. I also ride. I have a 2003 Harley Springer Softail. The leaking had ut me down to just short trips but I am hoping that when I get over the surgery and heal up I can get back to some longer rides.

    AUS "turn on"
    There shouldn't be any adjustment. I certainly understand that you don't want any more poking and probing around (more pain). The doctor should basically push a button at the top of the pump (located in your scrotum) and give the bottom of the pump a squeeze or two. From that point on, peeing will be a two-handed operation. You'll have to drop your drawers, hold the tubes/top of the pump with one hand and squeeze the bottom of the pump several times with the other hand. You'll pee like normal, and that's it. I haven't been able to pee in a urinal because of the drop your drawers/two-handed operation thing. Maybe you can figure it out. I just go into a stall in public restrooms. It doesn't hurt to squeeze the pump, there are no weird sensations, and you'll still feel the urge to pee just like the old days. Little kids and dogs make me nervous because they tend to jump and hit your balls, and that area with its pump, tubes, and other contraptions have to be protected at all times.

    I had a Softail Springer. I loved that thing. I had 50,000 miles on it when I sold it and I still miss it. My wife and I travel so much, I felt I needed something "bigger", so I bought a 2005 Road King Custom. It came with saddlebags and I bought a detachable tour pak. My wife has a Fatboy. She's been a motorcycle safety instructor for years.
  • flyfisherdon
    flyfisherdon Member Posts: 5

    AUS "turn on"
    There shouldn't be any adjustment. I certainly understand that you don't want any more poking and probing around (more pain). The doctor should basically push a button at the top of the pump (located in your scrotum) and give the bottom of the pump a squeeze or two. From that point on, peeing will be a two-handed operation. You'll have to drop your drawers, hold the tubes/top of the pump with one hand and squeeze the bottom of the pump several times with the other hand. You'll pee like normal, and that's it. I haven't been able to pee in a urinal because of the drop your drawers/two-handed operation thing. Maybe you can figure it out. I just go into a stall in public restrooms. It doesn't hurt to squeeze the pump, there are no weird sensations, and you'll still feel the urge to pee just like the old days. Little kids and dogs make me nervous because they tend to jump and hit your balls, and that area with its pump, tubes, and other contraptions have to be protected at all times.

    I had a Softail Springer. I loved that thing. I had 50,000 miles on it when I sold it and I still miss it. My wife and I travel so much, I felt I needed something "bigger", so I bought a 2005 Road King Custom. It came with saddlebags and I bought a detachable tour pak. My wife has a Fatboy. She's been a motorcycle safety instructor for years.

    ams800
    I differ from you Skid Row Tom. If I feel between the scrotum and anus , I can feel the cuff,perhaps where it is located on me is different to you.
    If I was going to ride a motor-bike, I would get a custom seat made with a channel/slot down the middle where I sit. I think thatif you don't, you will tilt the cuff and get leaks.
    Even if I sit on a bar stool, with one leg dangling to one side, rather than sitting straight the cuff will leak.
    Sure beats the pads/pants though!
    Don
  • Skid Row Tom
    Skid Row Tom Member Posts: 125

    ams800
    I differ from you Skid Row Tom. If I feel between the scrotum and anus , I can feel the cuff,perhaps where it is located on me is different to you.
    If I was going to ride a motor-bike, I would get a custom seat made with a channel/slot down the middle where I sit. I think thatif you don't, you will tilt the cuff and get leaks.
    Even if I sit on a bar stool, with one leg dangling to one side, rather than sitting straight the cuff will leak.
    Sure beats the pads/pants though!
    Don

    I feel the cuff
    I can feel the cuff if I probe around. It's "hidden away" and not quite as noticeable as the pump and reservoir, however. I have a Sundowner seat made by Harley. It's better than stock (anything's better than a stock Harley seat), but I still get a few dribbles of stress incontinence during the day no matter if I'm on my bike of just going about things as normal. That's why I have to wear a liner. It sure beats wearing thick pads and changing them 4-6 times a day or wearing incontinence underwear (and sometimes both). Reading the AMS 800 literature, it says you should avoid sitting on hard surfaces (bar stools, benches, etc.) probably resulting in the tilting of the cuff you mentioned. However, I sit where I want with no problems (other than a dribble or two). I went to my urologist yesterday for my semi-annual check-up and annual PSA. I keep telling him that the AUS, although not perfect, has given me my life back and I do what I want with little concern about incontinence. Before the AUS, incontinence was controlling my life causing me to withdraw from social situations and limiting activities. Now, I feel I'm free.
  • hightide
    hightide Member Posts: 26

    I feel the cuff
    I can feel the cuff if I probe around. It's "hidden away" and not quite as noticeable as the pump and reservoir, however. I have a Sundowner seat made by Harley. It's better than stock (anything's better than a stock Harley seat), but I still get a few dribbles of stress incontinence during the day no matter if I'm on my bike of just going about things as normal. That's why I have to wear a liner. It sure beats wearing thick pads and changing them 4-6 times a day or wearing incontinence underwear (and sometimes both). Reading the AMS 800 literature, it says you should avoid sitting on hard surfaces (bar stools, benches, etc.) probably resulting in the tilting of the cuff you mentioned. However, I sit where I want with no problems (other than a dribble or two). I went to my urologist yesterday for my semi-annual check-up and annual PSA. I keep telling him that the AUS, although not perfect, has given me my life back and I do what I want with little concern about incontinence. Before the AUS, incontinence was controlling my life causing me to withdraw from social situations and limiting activities. Now, I feel I'm free.

    AMS 800 & the cuff
    I am due to get my 800 turned on Aug. 11 . I can feel the pump but cannot feel the top to hold like the vidio shows. Maby by the time I go to get activated I will be able to feel the whole thing, I sure hope so. Other than PC , I find it amazing that I have bike riding in common with Tom and like Don, I am an avid flyfisher and tyer like Don. Enjoyed your comments guys.
    Regards,
    hightide
  • Trew
    Trew Member Posts: 931 Member
    hightide said:

    AMS 800 & the cuff
    I am due to get my 800 turned on Aug. 11 . I can feel the pump but cannot feel the top to hold like the vidio shows. Maby by the time I go to get activated I will be able to feel the whole thing, I sure hope so. Other than PC , I find it amazing that I have bike riding in common with Tom and like Don, I am an avid flyfisher and tyer like Don. Enjoyed your comments guys.
    Regards,
    hightide

    Aug 11 Date
    The same day I will be evaluated for getting a urethroplasty done. Seems like that is the door I must go through first if I am going to get an AUS. And Aug 11 at 2: 30 is the time of my appointment.

    Hightide, I wish you well.
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    hightide said:

    AMS 800 & the cuff
    I am due to get my 800 turned on Aug. 11 . I can feel the pump but cannot feel the top to hold like the vidio shows. Maby by the time I go to get activated I will be able to feel the whole thing, I sure hope so. Other than PC , I find it amazing that I have bike riding in common with Tom and like Don, I am an avid flyfisher and tyer like Don. Enjoyed your comments guys.
    Regards,
    hightide

    Holding the AUS
    After mine was activated, I was still swollen in certain areas and couldn't feel the top of the pump. I did locate the tubes going into it, however, and that's what I was grabbing when I squeezed the pump. Like I said, I REALLY think all urologists who install this thing should have a model in their office so the recipient can get a tactile sensation of what they're feeling for and what it feels like to squeeze the pump. Regardless, it all worked out. For what it's worth, my pump doesn't hang vertically like the pictures and videos show. It's somewhat at a 45 degree angle, and if it's cold, it rotates to near horizontal, but it doesn't hurt and it's still functional. Yours may change positions a bit in a few months, too.
  • hightide
    hightide Member Posts: 26
    Trew said:

    Aug 11 Date
    The same day I will be evaluated for getting a urethroplasty done. Seems like that is the door I must go through first if I am going to get an AUS. And Aug 11 at 2: 30 is the time of my appointment.

    Hightide, I wish you well.

    Aug. 11 (We know where each will be that day !!!)
    Good luck with your procedure, I am sure you will do well. Heal up and then move on to the AUS-800. I can't wait for a dry day & night!!!!
    Regards,
    hightide
  • hightide
    hightide Member Posts: 26

    Holding the AUS
    After mine was activated, I was still swollen in certain areas and couldn't feel the top of the pump. I did locate the tubes going into it, however, and that's what I was grabbing when I squeezed the pump. Like I said, I REALLY think all urologists who install this thing should have a model in their office so the recipient can get a tactile sensation of what they're feeling for and what it feels like to squeeze the pump. Regardless, it all worked out. For what it's worth, my pump doesn't hang vertically like the pictures and videos show. It's somewhat at a 45 degree angle, and if it's cold, it rotates to near horizontal, but it doesn't hurt and it's still functional. Yours may change positions a bit in a few months, too.

    Holding the AUS
    Hey Tom, thanks for your reply. I still have some swelling also and was thinking that might be why I could not feel the complete structure. I still am setting in a warm tub each day and can identify things better right after I get out. Maby by the 11th most of the swelling will be gone. Just have to much time think about things these days. I just want to get it activated and get DRY !!!!
    Regards,
    hightide
  • flyfisherdon
    flyfisherdon Member Posts: 5
    hightide said:

    Holding the AUS
    Hey Tom, thanks for your reply. I still have some swelling also and was thinking that might be why I could not feel the complete structure. I still am setting in a warm tub each day and can identify things better right after I get out. Maby by the 11th most of the swelling will be gone. Just have to much time think about things these days. I just want to get it activated and get DRY !!!!
    Regards,
    hightide

    AMS800
    Hightide, Just returned from fly-fishing pink salmon in Campbell River,BC,Canada this morning.Caught too many to count:-)
    I found that before the AMS800, and because of the incontinence, I had lost a lot of my desire for fishing.Since the instal,interest has returned.
    I had my AMS800 installed at the UBC hospital (University of British Columbia),because my urologist who had done my Radical had never installed one. He did want to activate it, which was ok with me, because I did not want to go back on the ferry to Vancouver to get it activated. He took3 times to finally get it activated, with some instruction from me>
    I had actually thought of doing it myself after reading all the literature I could find.
    My wife and I are heading to Europe on Monday for a BusTour covering 11 countries, I would never have done this without the sphincter.
    It is our 50th Anniversary today.
    Don
  • Trew
    Trew Member Posts: 931 Member

    AMS800
    Hightide, Just returned from fly-fishing pink salmon in Campbell River,BC,Canada this morning.Caught too many to count:-)
    I found that before the AMS800, and because of the incontinence, I had lost a lot of my desire for fishing.Since the instal,interest has returned.
    I had my AMS800 installed at the UBC hospital (University of British Columbia),because my urologist who had done my Radical had never installed one. He did want to activate it, which was ok with me, because I did not want to go back on the ferry to Vancouver to get it activated. He took3 times to finally get it activated, with some instruction from me>
    I had actually thought of doing it myself after reading all the literature I could find.
    My wife and I are heading to Europe on Monday for a BusTour covering 11 countries, I would never have done this without the sphincter.
    It is our 50th Anniversary today.
    Don

    Wow- what an encouraging
    Wow- what an encouraging story to build hope on. I had to change 3xs today. Old interests are gone, I just want to stay as close to home as much as possible.

    From your posts I understand you never had any problems with strictures? Seems at every turn I run into some kind of complication. The urethroplasty acutally rebuilds a section of the urethra from tissue taken from the mouth- a nice piece of tissue, too, from what I have learned. From the video clip I watched it looks like its over a an inch square. Well, I'll learn about that soon enough.

    Thanks for posting- it does make me more hopeful as I wait for my AUS.
  • hightide
    hightide Member Posts: 26

    AMS800
    Hightide, Just returned from fly-fishing pink salmon in Campbell River,BC,Canada this morning.Caught too many to count:-)
    I found that before the AMS800, and because of the incontinence, I had lost a lot of my desire for fishing.Since the instal,interest has returned.
    I had my AMS800 installed at the UBC hospital (University of British Columbia),because my urologist who had done my Radical had never installed one. He did want to activate it, which was ok with me, because I did not want to go back on the ferry to Vancouver to get it activated. He took3 times to finally get it activated, with some instruction from me>
    I had actually thought of doing it myself after reading all the literature I could find.
    My wife and I are heading to Europe on Monday for a BusTour covering 11 countries, I would never have done this without the sphincter.
    It is our 50th Anniversary today.
    Don

    AMS800
    Hey, don, thanks for your comment on the 30th . Sorry I am just now replying, have been tied up with plumbing problems on some rental property.

    I would have loved to have been on that fishing trip !! You and I are about as far away from each other as we can be and still be in the northern hemisphere. I live on the Gulf of Mexico in the Florida panhandle. My wife and I were out there about three years ago. My wife's best girl friend and her husband live in Seattle and we visited them a couple of days and then rode the AmTrack up to Vancouver. Took a big ferry out to Victoria and came back to Vancouver on a Otter sea plane. You live in a beautiful part of the world.

    I had my AMS800 and the 700-3 piece penile implant put in at Austin, Texas.The Urology Team there does a lot of them. My local urologist has done some and he is going to turn mine on a week from today!!!! (Aug. 11)

    Congratulations to you and your wife on the 50th. Sounds like ya'll are taking a trip of a lifetime.
    Regards, hightide
  • hightide
    hightide Member Posts: 26
    Trew said:

    Wow- what an encouraging
    Wow- what an encouraging story to build hope on. I had to change 3xs today. Old interests are gone, I just want to stay as close to home as much as possible.

    From your posts I understand you never had any problems with strictures? Seems at every turn I run into some kind of complication. The urethroplasty acutally rebuilds a section of the urethra from tissue taken from the mouth- a nice piece of tissue, too, from what I have learned. From the video clip I watched it looks like its over a an inch square. Well, I'll learn about that soon enough.

    Thanks for posting- it does make me more hopeful as I wait for my AUS.

    Wed. Aug. 11-----Big Day For Both OF US
    Hey, Trew !! You and I both have a big day comming this Wed. the 11th.
    Wishing you the best as you go for you urethroplasty !!!! I am getting both of my implants activated about 8:45am on Wed. morning, hoping I can report that I am DRY!! after the appointment.
    Regards, hightide
  • Trew
    Trew Member Posts: 931 Member
    hightide said:

    Wed. Aug. 11-----Big Day For Both OF US
    Hey, Trew !! You and I both have a big day comming this Wed. the 11th.
    Wishing you the best as you go for you urethroplasty !!!! I am getting both of my implants activated about 8:45am on Wed. morning, hoping I can report that I am DRY!! after the appointment.
    Regards, hightide

    Hightide, I won't have the
    Hightide, I won't have the urethroplasty done on the 11th- that is my eval with the U of MI doc who does these surgeries. Still a big step for me. Before I can get a AUS I first have to get the stricture problem solved that that is what the urethroplasty is for.

    Again, still a big day for me- 4 tests scheduled and then hear what this doctor says. I"m looking forward to this like it was Xmas. I want to get past this part of my life as quickly as possible now. No holding back, no doubts, just, Dr. Doc, DO SOMETHING! HELP ME!!!

    HighTide- I will be thinking of you on the 11th- I wish you well.
  • ejn
    ejn Member Posts: 64
    Trew said:

    Hightide, I won't have the
    Hightide, I won't have the urethroplasty done on the 11th- that is my eval with the U of MI doc who does these surgeries. Still a big step for me. Before I can get a AUS I first have to get the stricture problem solved that that is what the urethroplasty is for.

    Again, still a big day for me- 4 tests scheduled and then hear what this doctor says. I"m looking forward to this like it was Xmas. I want to get past this part of my life as quickly as possible now. No holding back, no doubts, just, Dr. Doc, DO SOMETHING! HELP ME!!!

    HighTide- I will be thinking of you on the 11th- I wish you well.

    Trew, I cant wait to here
    Trew, I cant wait to here your report from Wednesday. I will be in surgery on Wednesday (Davinci)but I will get to the computer as soon as I can to check in on your appointment. I sure hope you have a wonderful Xmas in August and get everything you wanted under the tree. Sounds like it might be a long day so try to get some sleep unlike xmas eve when we were kids. Best of luck to you.

    Ed
  • Trew
    Trew Member Posts: 931 Member
    ejn said:

    Trew, I cant wait to here
    Trew, I cant wait to here your report from Wednesday. I will be in surgery on Wednesday (Davinci)but I will get to the computer as soon as I can to check in on your appointment. I sure hope you have a wonderful Xmas in August and get everything you wanted under the tree. Sounds like it might be a long day so try to get some sleep unlike xmas eve when we were kids. Best of luck to you.

    Ed

    Ejn, I wish you well
    Ejn, thanks- and I wish you the best, too. I didn't find the surgery itself that uncomfortable- and lots of guys get their bladder control back- I'm in that much smaller percentage that didn't.

    Wednesday is just an eval to see what can and should be done next. The end result somewhere on down the road should be a new deivce installed to will do for me what my body no longer does. Wednesday is the start of the process that hopefully ends with no more pads!! 1 a day would be more than exceptable, even.

    Ejn, I hope you aren't too nervous- nasty turn in your life to be stuck with PC, but life is still good on the other side. For all my whinning and complaining, Ido believe that.
  • chickinvasion
    chickinvasion Member Posts: 3
    hightide said:

    AMS 800 & the cuff
    I am due to get my 800 turned on Aug. 11 . I can feel the pump but cannot feel the top to hold like the vidio shows. Maby by the time I go to get activated I will be able to feel the whole thing, I sure hope so. Other than PC , I find it amazing that I have bike riding in common with Tom and like Don, I am an avid flyfisher and tyer like Don. Enjoyed your comments guys.
    Regards,
    hightide

    Post Op Travel
    Girl here.
    My husband gets the AUS on September 10. I just retired and we had planned for years to take that autumn cruise on the Eastern seaboard. He's had serious incontinence for a couple of years, but he still booked the cruise, planning to take an extra suitcase.
    Now I am reading your posts, 'cause I want him to be real about this. Can he fly and do a boat trip 15 days after this surgery?
    Reading abut those of you who fish and ride bikes is encouraging. My guy will love to get back to life as he knew it.
  • Skid Row Tom
    Skid Row Tom Member Posts: 125

    Post Op Travel
    Girl here.
    My husband gets the AUS on September 10. I just retired and we had planned for years to take that autumn cruise on the Eastern seaboard. He's had serious incontinence for a couple of years, but he still booked the cruise, planning to take an extra suitcase.
    Now I am reading your posts, 'cause I want him to be real about this. Can he fly and do a boat trip 15 days after this surgery?
    Reading abut those of you who fish and ride bikes is encouraging. My guy will love to get back to life as he knew it.

    AUS
    It may be "possible", but not very probable. PLEASE don't let me discourage you (or your husband) -- the AUS turned my life around. But, the surgery is brutal -- much worse, in my opinion, than my radical prostatectomy. Remember, the surgery involves making an incision from your anus to the base of your penis. My sac turned a lovely plum purple color. Having a bowel movement was problematic-- any straining caused the stitches to rip. I was on antibiotics (Cipro) for two weeks and felt like crap. I had to constantly monitor infections and clean myself well because there was moisture and warmth around the incision site, great breeding grounds for germs. For several days, every time I touched myself down there, I came up with fingersful of blood. Sitting was uncomfortable. As I recall (from 2007), it took several weeks for the swelling to go down. Remember also, that this is a two stage process. The first stage is the surgery. You may be "continent" after surgery, but it's due to the swelling. The "continence" wears off after a few days, and then it's back to "normal" (i.e., no control). The AUS is not activated for several weeks after surgery, so I would imagine he'd still be incontinent during the trip.

    Again, all the hassle was worth it.

    Hopefully, somebody with more recent surgery can chime in.

    Tom
  • Trew
    Trew Member Posts: 931 Member

    AUS
    It may be "possible", but not very probable. PLEASE don't let me discourage you (or your husband) -- the AUS turned my life around. But, the surgery is brutal -- much worse, in my opinion, than my radical prostatectomy. Remember, the surgery involves making an incision from your anus to the base of your penis. My sac turned a lovely plum purple color. Having a bowel movement was problematic-- any straining caused the stitches to rip. I was on antibiotics (Cipro) for two weeks and felt like crap. I had to constantly monitor infections and clean myself well because there was moisture and warmth around the incision site, great breeding grounds for germs. For several days, every time I touched myself down there, I came up with fingersful of blood. Sitting was uncomfortable. As I recall (from 2007), it took several weeks for the swelling to go down. Remember also, that this is a two stage process. The first stage is the surgery. You may be "continent" after surgery, but it's due to the swelling. The "continence" wears off after a few days, and then it's back to "normal" (i.e., no control). The AUS is not activated for several weeks after surgery, so I would imagine he'd still be incontinent during the trip.

    Again, all the hassle was worth it.

    Hopefully, somebody with more recent surgery can chime in.

    Tom

    Skid Row, you are providing
    Skid Row, you are providing a much needed service here. Most men may never come close to needing an AUS installed, but for those of us who are likely candidates your's and other's testimony certainly helps with the mental prepration needed for an important surgery like this. That it is more involved and complicated that getting the prostate out is what I have heard in other places. But I no longer care about post surgery pain or swelling- I just want a chance at being "normal" again and getting back out on the trail with a 40- 50 lb pack on my back.

    Again, thanks for sharing.
  • chickinvasion
    chickinvasion Member Posts: 3

    AUS
    It may be "possible", but not very probable. PLEASE don't let me discourage you (or your husband) -- the AUS turned my life around. But, the surgery is brutal -- much worse, in my opinion, than my radical prostatectomy. Remember, the surgery involves making an incision from your anus to the base of your penis. My sac turned a lovely plum purple color. Having a bowel movement was problematic-- any straining caused the stitches to rip. I was on antibiotics (Cipro) for two weeks and felt like crap. I had to constantly monitor infections and clean myself well because there was moisture and warmth around the incision site, great breeding grounds for germs. For several days, every time I touched myself down there, I came up with fingersful of blood. Sitting was uncomfortable. As I recall (from 2007), it took several weeks for the swelling to go down. Remember also, that this is a two stage process. The first stage is the surgery. You may be "continent" after surgery, but it's due to the swelling. The "continence" wears off after a few days, and then it's back to "normal" (i.e., no control). The AUS is not activated for several weeks after surgery, so I would imagine he'd still be incontinent during the trip.

    Again, all the hassle was worth it.

    Hopefully, somebody with more recent surgery can chime in.

    Tom

    Procedure Concerns
    His cancer was colorectal. It was in 1986. He got surgery and an ostomy, then the chemo and radiation. The urinary incontinence began with prostate TURP procedure about 10 years ago, and it just got worse and worse. At least bowel straining will not be an issue. Trying to look on the bright side here.
    Cipro is nasty stuff. When I heard that they have supplies of Cipro to dose the government leaders with, in case of an anthrax attack, I thought, "Yikes! Guys on that stuff running the country???"
    Thank you, Tom, for replying and all of you for doing this blog. You are inspirational. So is my guy.
    Here's to life! Don't just survive..... thrive!!
  • Hds15
    Hds15 Member Posts: 9

    AUS wearer
    I've had an artificial urinary sphincter implant for over three years. I absolutely DID NOT WANT THIS -- but under the circumstances, if I had to do it all over again, I'd do it. The surgery's a ****, it's not perfect, but it gave me my life back. I can do anything anybody else can do. I go to the gym regularly, ride a motorcycle, and go about my normal business. I still have to wear a "pantiliner" (I wish they'd call it something different for men), but it's thin and unnoticeable.

    Give me specific questions and I'll try to give you specific answers.

    Tom

    AMS 800 Urinary Control System
    Tom my name is Hal. I, like you have had this devise implanted in May 2010 and activated in July of 2010. I am currently urinating 10 to 15 time a day - at night I wake up 4 to 5 times before the sun rises. I'm taking are Vesicare(10mm)once a day. When I asked my doctor how long this situation will continue he tells me I have to be patient - he says everbody is different. I'm going into my 5th month since the activation.

    What has been your experience?
    How are you doing now?
    My e-mail address [email protected]
    Any info you could pass on would be greatly appreciated.