AMS 800 artificial urinary sphincter

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Comments

  • Trew
    Trew Member Posts: 931 Member
    Still Waiting.....
    I am seeing Dr. Latini at the U of MI. She is waiting for scar tissue to settle down and the bladder neck to stablize. Until then I just wait and use up my supply of pads. I see Dr. Latini again on Jan 3. Until then......

    So it goes.
  • Hds15
    Hds15 Member Posts: 9
    Trew said:

    Still Waiting.....
    I am seeing Dr. Latini at the U of MI. She is waiting for scar tissue to settle down and the bladder neck to stablize. Until then I just wait and use up my supply of pads. I see Dr. Latini again on Jan 3. Until then......

    So it goes.

    My name is Hal. I, like you
    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.
  • Hds15
    Hds15 Member Posts: 9
    hightide said:

    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

    My name is Hal. I, like you
    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.
  • Hds15
    Hds15 Member Posts: 9
    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

    My name is Hal. I, like you
    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.
  • Hds15
    Hds15 Member Posts: 9
    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

    My name is Hal. I, like you
    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.
  • Hds15
    Hds15 Member Posts: 9
    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

    My name is Hal. I, like you
    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.
  • Hds15
    Hds15 Member Posts: 9
    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

    My name is Hal. I, like you
    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.
  • Hds15
    Hds15 Member Posts: 9
    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

    My name is Hal. I, like you
    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.
  • Hds15
    Hds15 Member Posts: 9
    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

    My name is Hal. I, like you
    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.
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    Hds15 said:

    My name is Hal. I, like you
    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.

    AUS info
    I've had the AUS since spring of 2007. After activation, the number of times I urinated during the day were "normal". Sometimes I have to get up once a night, but oftentimes I don't have to pee during the night. I'm wondering if you're experiencing bladder spasms. The AUS shouldn't make you pee any more or any less. Hopefully, your bladder will settle down. You may want to ask the doctor abvout things to avoid until it settles down -- alcohol, caffeine, etc.
  • Trew
    Trew Member Posts: 931 Member

    AUS info
    I've had the AUS since spring of 2007. After activation, the number of times I urinated during the day were "normal". Sometimes I have to get up once a night, but oftentimes I don't have to pee during the night. I'm wondering if you're experiencing bladder spasms. The AUS shouldn't make you pee any more or any less. Hopefully, your bladder will settle down. You may want to ask the doctor abvout things to avoid until it settles down -- alcohol, caffeine, etc.

    I started radiation 1 year
    I started radiation 1 year ago. Surgery was in march 09 before that. Since surgery I have been getting up 3- 5 times a night, but the last 4- 6 weeks I am getting up about once a night and the sleep is wonderful. I am not leaking nearly as much at night either, but still very limited control in the day.

    Just sharing that sometimes time makes the difference. I tried flomax- but I had a number of problems with it and quit.

    Skid row- nice to see you again. My next U of MI appointment is jan 3. Maybe then I will find out IF/When i can get an AUS installed.

    Until then, back into enduring for me.
  • Trew
    Trew Member Posts: 931 Member
    Hds15 said:

    My name is Hal. I, like you
    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.

    Hds- I am still waiting to
    Hds- I am still waiting to get cleared for an AUS. My urethra is a mess and the docs at U of MI won't install one in me until the tissue stablizes. So I just pee my pads all day. What a way to live!
    I think I have had enough of all this, I am going back into denail!
  • ob66
    ob66 Member Posts: 227 Member

    AUS info
    I've had the AUS since spring of 2007. After activation, the number of times I urinated during the day were "normal". Sometimes I have to get up once a night, but oftentimes I don't have to pee during the night. I'm wondering if you're experiencing bladder spasms. The AUS shouldn't make you pee any more or any less. Hopefully, your bladder will settle down. You may want to ask the doctor abvout things to avoid until it settles down -- alcohol, caffeine, etc.

    Hello Skid Row
    My guru, my guiding star. Everything you said came true. August 2010 activated. Ever since I am as normal as any other man, except I have to "pluck my magic twanger" to pee. I started in stalls, for I would drop pants and underpants. Now, if wearing shorts, I can stand up to the urinal and activate and most people in the vicinity would have no clue (maybe some would think I was fondling myself a bit too much). This is great. For those who have any doubts you can e-mail me for details at [email protected] I am more than willing to share, and have helped a number of friends in the process. Not everything is 100% for the most difficult cases, but all those in Trew's boots who have been able to try it are converts. It has to be the gold standard.
  • Trew
    Trew Member Posts: 931 Member
    ob66 said:

    Hello Skid Row
    My guru, my guiding star. Everything you said came true. August 2010 activated. Ever since I am as normal as any other man, except I have to "pluck my magic twanger" to pee. I started in stalls, for I would drop pants and underpants. Now, if wearing shorts, I can stand up to the urinal and activate and most people in the vicinity would have no clue (maybe some would think I was fondling myself a bit too much). This is great. For those who have any doubts you can e-mail me for details at rfors[email protected] I am more than willing to share, and have helped a number of friends in the process. Not everything is 100% for the most difficult cases, but all those in Trew's boots who have been able to try it are converts. It has to be the gold standard.

    all I want for Xmas.....
    I can hardly wait.

    I find that the less I do, the less I drip so I am becoming more and more inactive. Just stinks. I have been sining to myself, " All I want for Xmas is a new AUS...." but its not going to happen this year.

    My drip is slowing down as I move further nd further away from the last surery where scare tissue was cut. Cath is going well, right now no difficulties, so I am hopeful in early 2011 I can get this done and move on.
  • hightide
    hightide Member Posts: 26
    Trew said:

    all I want for Xmas.....
    I can hardly wait.

    I find that the less I do, the less I drip so I am becoming more and more inactive. Just stinks. I have been sining to myself, " All I want for Xmas is a new AUS...." but its not going to happen this year.

    My drip is slowing down as I move further nd further away from the last surery where scare tissue was cut. Cath is going well, right now no difficulties, so I am hopeful in early 2011 I can get this done and move on.

    Hope you get what you want for Xmas...
    Hey Trew, good to see you are still on here and I get the impression things are getting a little better. I have not been on the board in a while but I am getting caught up on a few things so I should be checking in more often. Wishing you the best for the Holidays and hoping you get good news in Jan. 2011.
    Regards, hightide
  • DB78602
    DB78602 Member Posts: 3

    AUS info
    I've had the AUS since spring of 2007. After activation, the number of times I urinated during the day were "normal". Sometimes I have to get up once a night, but oftentimes I don't have to pee during the night. I'm wondering if you're experiencing bladder spasms. The AUS shouldn't make you pee any more or any less. Hopefully, your bladder will settle down. You may want to ask the doctor abvout things to avoid until it settles down -- alcohol, caffeine, etc.

    AMS800
    All, after finding this site and reading the posts i think there is finaly hope for all of the leakage problems that I have been having since surgery. Tom your ordeal sounds a lot like I have have gone through the last year. I have had a number of issues of scar tissue after surgery that required trips to the ER to be catheterized. Self catheterization would not get past the scaring. Finally had to be dilated as Tom discribed to a "french 22" that has finally cleared the scar tissue but seems to cause a major loss of control. going through 10 to 12 pads a day. I am OK sitting but if I am standing or walking there is almost no control and kiegal is not working. I resently moved to the Austin area and the Urologist here told me about the AMS unit. I am scheduled to see him again in Feb. and thinking about scheduling the implant.

    You guys have given me a vast amount of information, thanks
  • Zegoli
    Zegoli Member Posts: 11
    DB78602 said:

    AMS800
    All, after finding this site and reading the posts i think there is finaly hope for all of the leakage problems that I have been having since surgery. Tom your ordeal sounds a lot like I have have gone through the last year. I have had a number of issues of scar tissue after surgery that required trips to the ER to be catheterized. Self catheterization would not get past the scaring. Finally had to be dilated as Tom discribed to a "french 22" that has finally cleared the scar tissue but seems to cause a major loss of control. going through 10 to 12 pads a day. I am OK sitting but if I am standing or walking there is almost no control and kiegal is not working. I resently moved to the Austin area and the Urologist here told me about the AMS unit. I am scheduled to see him again in Feb. and thinking about scheduling the implant.

    You guys have given me a vast amount of information, thanks

    AMS800
    DB78602, I'm new to the list.
    Just noticed you didn't get a reply to your jan 8th post, have you had your visit to the urologist?
    I'm also seriously considering the AMS800 implant. (I just wrote a long text introducing myself, but lost it when I clicked on "Preview comment"!) Guess I'll do it again when my frustration calms down.
    Zegoli
  • DB78602
    DB78602 Member Posts: 3
    Zegoli said:

    AMS800
    DB78602, I'm new to the list.
    Just noticed you didn't get a reply to your jan 8th post, have you had your visit to the urologist?
    I'm also seriously considering the AMS800 implant. (I just wrote a long text introducing myself, but lost it when I clicked on "Preview comment"!) Guess I'll do it again when my frustration calms down.
    Zegoli

    AMS800
    Yeah saw him last week. The follow up was good,PSA test was undetectable. We talked some more about the AMS800. Think I will go ahead with it later this year once the insurance deductable is taken care of for the year but thats another story. In the mean time I did start using a Acticuf clamp. http://www.acticuf.com/index.php
    It works ok but would not want to wear it more then about six hours then everything gets pretty tender. But at least I am able to work and play golf without having to run to the restroom every hour or less to change a pad.

    Dennis
  • Trew
    Trew Member Posts: 931 Member
    DB78602 said:

    AMS800
    Yeah saw him last week. The follow up was good,PSA test was undetectable. We talked some more about the AMS800. Think I will go ahead with it later this year once the insurance deductable is taken care of for the year but thats another story. In the mean time I did start using a Acticuf clamp. http://www.acticuf.com/index.php
    It works ok but would not want to wear it more then about six hours then everything gets pretty tender. But at least I am able to work and play golf without having to run to the restroom every hour or less to change a pad.

    Dennis

    I have found that a good
    I have found that a good postal scale is the way to keep track of leakage. You can deduct the weight of the pad and just measure actual urine in the pad. right now I am leaking around 10 oz a day with variations running between 8- 12 or as high as 15 oz. But this gives me a better idea what I am dealing iwth. I reord it all in a pad diary and take it in to the uro when I go. She finds it very helpful.

    Self-cath started after an or procedure to remove and cut scar tissue. On Sept 1 I stated cath 2x a day thrugh jan1.

    Jan 1x a day. Feb every other day, and for march I am now at once every 3rd day and April will be once every 5 or 6 days. I see the uro at U of MI on May 9 ( I know these appintments like I know Xmas!)and thenI expect to get a date for the AUS. I can hardly wait. Well, no, I ca't wait, that has been the problem.

    I confided in a long distance freind the problem I was having and told me 'why don't you just go to the toilet more often?" which indicates many may have no idea what incontinence is. I only wish it could be solved so easily as going to the toilet more often.

    May 9 is the date. I get scoped to see if all is clear and then, I hope I can get this all done by June.
  • Zegoli
    Zegoli Member Posts: 11
    DB78602 said:

    AMS800
    Yeah saw him last week. The follow up was good,PSA test was undetectable. We talked some more about the AMS800. Think I will go ahead with it later this year once the insurance deductable is taken care of for the year but thats another story. In the mean time I did start using a Acticuf clamp. http://www.acticuf.com/index.php
    It works ok but would not want to wear it more then about six hours then everything gets pretty tender. But at least I am able to work and play golf without having to run to the restroom every hour or less to change a pad.

    Dennis

    Pleasure and Incontinence
    Like Dennis said, “you guys have given me a vast amount of information, thanks!”. Awfully helpful. But I do have a new topic I’d like to discuss.

    I have a mild urinary incontinence, just one pad a day suffices. And no need to wear one for sleeping. Seems like heaven? But I’m seriously considering an AUS – you wanna know why? Because nowadays I’m single.

    From what I’ve gathered, men have three urinary sphincters – the prostate, one leading out of the bladder, and a third at the base of the pelvis, just behind the scrotum. My first two were sacrificed, what gives me control is the third one (plus some muscle pressure ). But this 3rd one is supposed to let go on pleasurable states, like sexual release. Furthermore, the bladder is supposed to contract when everything else relaxes. That’s all involuntary, regulated by the autonomous nervous system.

    So, the better I get, lesser control I have whenever I get minimally excited. It wasn’t always so. My post-op when I got a penile implant (rigid type) was awful for over two months, and for 5 months I was so traumatized that I never fully relaxed. Which meant absolutely no leaks at all, I thought I was cured from incontinence. Until one day I had an erotic fantasy while going to work and ended up with a 10 inch blotch in my pants. I had finally come out of a permanent tensioned state and back to loss of control.
    Now, how can I flirt if becoming interested is enough to make me squirt? Emptying my bladder first is not enough (and I passed that horrible urodynamic testing), the minimum residue in the bladder suffices for pad overflow. And such flirting situations are usually unexpected. Quite embarrassing!

    When I had a partner, incontinence was bothersome during sex, but it was far more manageable, things could be planned for minimum mess, the surprise factor was somewhat under control. But even then, having control even (and specially) when naked would be great! But now that I’m single, I’m really looking forward to the AUS benefits. It replaces the sphincters I lost, liberating the one I still have from improper stress.

    Since none of you mentioned this question before, I thought, well this talk may be a bit intimate for a list. Or perhaps for those of you that have a heavy incontinence there are just other priorities bothering you. Just in case any of you’d prefer talking about it in private, you can reach me at [email protected] . No trouble for me though, I can be straightforward about it.