AMS 800 artificial urinary sphincter

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Comments

  • Trew
    Trew Member Posts: 932 Member

    The AUS and pad use
    I'll never be back to the old "normal". I can't spend a lot of time thinking about it, or I know I'll get terribly depressed. I've had to adapt to the "new normal". It sounds like you're active, and so am I. If I have a day of relative inactivity (e.g., goofing around the house, watching a ballgame on T.V., going out to dinner with my wife), one "pantiliner" is more than enough. It will last all day and all night. For instance, yesterday, I rode my motorcycle to a festival -- about 225 miles -- walked around, ate, got on and off my bike, went to the grocery store when I got home, did some housework, and there was a dime-sized spot on my liner. However, if I go to the gym, work on the weight machines (either upper or lower body -- and upper body seems to cause more problems believe it or not), and walk/jog three miles,I use a Tena brand "Slender Pads, Ultra Thin" -- the package with two water drops on it. I'm not sure a liner would be sufficient. My son and I did a lot of hiking in Alaska last fall, and the liner lasted all day. However, for serious hiking or backpacking (like on the Appalachian Trail or a day hike that would require major elevation changes), I would wear the two-drop pad. My urologist said he could do a second operation and put in a second cuff which would almost "guarantee" 100% dryness. But no thanks -- not ready for that yet. Your last comment said a lot -- you must consider the extent to which the incontinence is controlling your life. Without the AUS, I would wear a heavy pad and could go ONE PLACE, for instance, out to eat. If my wife wanted to get groceries after we ate, I couldn't do it. I had to go home a change pads. About once a month, the heavy pad couldn't hold it and it would leak through to my pants. Awful! I had to have pads with me all the time -- in my car, at work. Other than the physical distress, I was FREAKIN' MISERABLE. Urine controlled my life. Like I said, the AUS gave me my life back (at least 95% of it) and I can't tell you how I fought against have this thing implanted. I tried PT, injections, medications, the Cunningham Clamp, etc. But now, depending on the day, my only decision is "a liner or a thin pad?". I would imagine, in your case, you ask "should I go backpacking today?" or "I wish I could hike today". If that sounds like you -- the yellow stuff is in control. I never ask anymore if I should do something. I just do it and prepare accordingly. By the way, a number of people that get the AUS are totally dry. As usual, I seem to be the exception.

    The Direction I am Heading.....
    This Tuesday I am scheduled for urodynamic testing to evaluate how my bladder is working.

    Testing takes 45- 60 min. I see I need an enema 2 hrs before testing. always an enema! What is with these aliens and their enemas?

    And I see the test is being done by a woman. I wonder if I do this naked?

    It is just one sort of humiliating thing after another- nake for surgery, enemas, ED discussions, pads, incontinency, AUS, .....

    And on 6/9/2010 I get to add a new word to my vocabulary and expereince: Cystoscopy. I am so excited about this- another opporutnity to be naked in front of strangers!

    PC really really sucks!
  • RRMCJIM
    RRMCJIM Member Posts: 149
    Trew said:

    The Direction I am Heading.....
    This Tuesday I am scheduled for urodynamic testing to evaluate how my bladder is working.

    Testing takes 45- 60 min. I see I need an enema 2 hrs before testing. always an enema! What is with these aliens and their enemas?

    And I see the test is being done by a woman. I wonder if I do this naked?

    It is just one sort of humiliating thing after another- nake for surgery, enemas, ED discussions, pads, incontinency, AUS, .....

    And on 6/9/2010 I get to add a new word to my vocabulary and expereince: Cystoscopy. I am so excited about this- another opporutnity to be naked in front of strangers!

    PC really really sucks!

    LOL
    And Uncle Sam wonders how we can suffer PTSD.....go figure
  • Kongo
    Kongo Member Posts: 1,166 Member
    Trew said:

    The Direction I am Heading.....
    This Tuesday I am scheduled for urodynamic testing to evaluate how my bladder is working.

    Testing takes 45- 60 min. I see I need an enema 2 hrs before testing. always an enema! What is with these aliens and their enemas?

    And I see the test is being done by a woman. I wonder if I do this naked?

    It is just one sort of humiliating thing after another- nake for surgery, enemas, ED discussions, pads, incontinency, AUS, .....

    And on 6/9/2010 I get to add a new word to my vocabulary and expereince: Cystoscopy. I am so excited about this- another opporutnity to be naked in front of strangers!

    PC really really sucks!

    Women
    Actually, I prefer a woman...their fingers are usually smaller!
  • lion1
    lion1 Member Posts: 241
    Kongo said:

    Women
    Actually, I prefer a woman...their fingers are usually smaller!

    Been thru it all--
    Trew,
    I have been thru all of that a couple times now----pretty ladies most the time---but it doesn't matter to me---all I could think about when they are doing these procedures is---FIND OUT WHAT REALLY IS GOING ON---AND THEN FIX IT!!!! JUST DO SOMETHING THAT WILL END MY INCONTINENCE!

    It's really ironic now. As I have all these procedures, II REALLY DOESN'T BOTHER ME---I guess I just feel that I'll keep pressing up my stairwell to a cure and eventually this will all be but a memory.

    My son gets Married in Dec 2010--- Iwant to be dry at the wedding.

    Good luck and Keep the Faith---I am 50 now--LRP at 46--------------time flies even when you are incontinent-----can't wait till my next rip to Walter Reed....

    Lion1
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    Trew said:

    The Direction I am Heading.....
    This Tuesday I am scheduled for urodynamic testing to evaluate how my bladder is working.

    Testing takes 45- 60 min. I see I need an enema 2 hrs before testing. always an enema! What is with these aliens and their enemas?

    And I see the test is being done by a woman. I wonder if I do this naked?

    It is just one sort of humiliating thing after another- nake for surgery, enemas, ED discussions, pads, incontinency, AUS, .....

    And on 6/9/2010 I get to add a new word to my vocabulary and expereince: Cystoscopy. I am so excited about this- another opporutnity to be naked in front of strangers!

    PC really really sucks!

    Uros and cystos
    Hey, good luck on the urodynamics test. Yep, you're naked. Just like dealing with prostate cancer -- check your inhibitions at the door. Two women gave me the test. I have no doubt that this test was originally developed by some Eastern European country to extract information from "suspects". However, it's one of the battles you fight to get your life back. I've had a good number of cystos. While undergoing tests (including the urodynaics test) to find out why I was peeing all over myself, they discovered I had bladder cancer. Two tumors -- both superficial thank God -- but I had to undergo treatment for this before they could address the incontinence. I had BCG treatments -- a "poison" they inject into your bladder by way of a cystoscope -- one a week for six weeks. Then a cysto every three months, yada yada, but now I'm on a yearly rotation. No sign of either cancer for three years. At the height of all this pain and discomfort, I concentrated everyday on enjoying the day and blocking out anxiety of things to come. The day that I had to go to the hospital or have a procedure, well, that was the day to fight.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    Kongo said:

    Women
    Actually, I prefer a woman...their fingers are usually smaller!

    I'm with you on having a female rather than male
    I feel more comfortable getting naked in front of a woman than man....hmm, how strange is that...maybe I am in the wrong profession...LOL I have never been very modest when it comes to nakedness...I guess that means I am comfortable in my own skin.
  • Trew
    Trew Member Posts: 932 Member

    Uros and cystos
    Hey, good luck on the urodynamics test. Yep, you're naked. Just like dealing with prostate cancer -- check your inhibitions at the door. Two women gave me the test. I have no doubt that this test was originally developed by some Eastern European country to extract information from "suspects". However, it's one of the battles you fight to get your life back. I've had a good number of cystos. While undergoing tests (including the urodynaics test) to find out why I was peeing all over myself, they discovered I had bladder cancer. Two tumors -- both superficial thank God -- but I had to undergo treatment for this before they could address the incontinence. I had BCG treatments -- a "poison" they inject into your bladder by way of a cystoscope -- one a week for six weeks. Then a cysto every three months, yada yada, but now I'm on a yearly rotation. No sign of either cancer for three years. At the height of all this pain and discomfort, I concentrated everyday on enjoying the day and blocking out anxiety of things to come. The day that I had to go to the hospital or have a procedure, well, that was the day to fight.

    ...while visons of sugar
    ...while visons of sugar plums danced......

    Ah, Merry chirstmas?

    From some eastern country, you say? oh boy oh boy oh boy........

    what a year this has been

    Maybe I'll find out what the bleeding is from anyway?

    maybe?
  • Trew
    Trew Member Posts: 932 Member

    Uros and cystos
    Hey, good luck on the urodynamics test. Yep, you're naked. Just like dealing with prostate cancer -- check your inhibitions at the door. Two women gave me the test. I have no doubt that this test was originally developed by some Eastern European country to extract information from "suspects". However, it's one of the battles you fight to get your life back. I've had a good number of cystos. While undergoing tests (including the urodynaics test) to find out why I was peeing all over myself, they discovered I had bladder cancer. Two tumors -- both superficial thank God -- but I had to undergo treatment for this before they could address the incontinence. I had BCG treatments -- a "poison" they inject into your bladder by way of a cystoscope -- one a week for six weeks. Then a cysto every three months, yada yada, but now I'm on a yearly rotation. No sign of either cancer for three years. At the height of all this pain and discomfort, I concentrated everyday on enjoying the day and blocking out anxiety of things to come. The day that I had to go to the hospital or have a procedure, well, that was the day to fight.

    Sometimes I hate the Internet!
    I just went online and made inquiery about urodynamics testing. Maybe I shouldn't have, BUT I guess it is nice to be prepared. And it does look like I will be naked.

    Now, to look up that other word.....
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    Trew said:

    Sometimes I hate the Internet!
    I just went online and made inquiery about urodynamics testing. Maybe I shouldn't have, BUT I guess it is nice to be prepared. And it does look like I will be naked.

    Now, to look up that other word.....

    Partially covered on Cystograms
    Trew, At least that's how they did me....after she discretly as possible hooked in the saline bottle to the cath I had a thin paper towel to cover the midsection so your not advertising your wares during the whole test...was quite respectable for the circumstance I thought. Hopefully you'll have the same care. As I remember, she seemed more nervous than me...LOL

    Randy
  • Kongo
    Kongo Member Posts: 1,166 Member

    Partially covered on Cystograms
    Trew, At least that's how they did me....after she discretly as possible hooked in the saline bottle to the cath I had a thin paper towel to cover the midsection so your not advertising your wares during the whole test...was quite respectable for the circumstance I thought. Hopefully you'll have the same care. As I remember, she seemed more nervous than me...LOL

    Randy

    With a name like Randy
    I can understand why she was nervous....especially if she knew about the double veins going into the penis. You should make sure you warn the medical staff not to get too frisky.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    Kongo said:

    With a name like Randy
    I can understand why she was nervous....especially if she knew about the double veins going into the penis. You should make sure you warn the medical staff not to get too frisky.

    LOL Good one
    Yes...it's really Randall but being Randy is much more fun!

    LOL
  • Trew
    Trew Member Posts: 932 Member

    LOL Good one
    Yes...it's really Randall but being Randy is much more fun!

    LOL

    Like in..................
    are we having fun yet?


    Urodynamic testing tomorrow afternoon- 3 pm ET. I can hardly wait.......

    As in "Are we having fun yet?"
  • Trew
    Trew Member Posts: 932 Member
    Trew said:

    Like in..................
    are we having fun yet?


    Urodynamic testing tomorrow afternoon- 3 pm ET. I can hardly wait.......

    As in "Are we having fun yet?"

    Urodynamic Testing and Fun
    Well, that is done! the test was between 3- 4 pm. A few small complicatons but the test was finally completed. left the office just after 4 pm. stopped for a pizza which Mrs Trew and I ate in the van. Then on home- a 30 min drive. When we got home there was a message on phone that my Cystoscopy originally scheduled for June 9 had now been moved up to this Friday. The continency center where the test was done is just across the way from the uro's office. Fast communications. the tech said the test was very informative and they had a lot of info very quickly and I was done about 10- 15 minutes early once the caths were put in. I am a bit tender right now.

    So Friday is the next step in the process. this is starting to move fast- maybe faster than I wanted it to.

    As the procedure was in process I suggested that maybe this (urodynamic testing) could be developed into a theme park. Cost for less than 1 hr of testing: $1,600.

    I don't understand all the dynamics and emotions involved, but for a few hours during and after I was almost overwhelmed how far I am slipping away from normal as I stood there nake with tubes hanging from personal body parts- front and back in the presence of people I had never met before. they made me feel as comfortable as possible, the I will say, the whole think is a bit socially ackward, to say the least. A year ago I never even knew such procedures existed and now I am on the receiving end of them.

    My, I am really upset with PC.

    Just a bit of venting here. Sorry. I will be better later.
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    Trew said:

    Urodynamic Testing and Fun
    Well, that is done! the test was between 3- 4 pm. A few small complicatons but the test was finally completed. left the office just after 4 pm. stopped for a pizza which Mrs Trew and I ate in the van. Then on home- a 30 min drive. When we got home there was a message on phone that my Cystoscopy originally scheduled for June 9 had now been moved up to this Friday. The continency center where the test was done is just across the way from the uro's office. Fast communications. the tech said the test was very informative and they had a lot of info very quickly and I was done about 10- 15 minutes early once the caths were put in. I am a bit tender right now.

    So Friday is the next step in the process. this is starting to move fast- maybe faster than I wanted it to.

    As the procedure was in process I suggested that maybe this (urodynamic testing) could be developed into a theme park. Cost for less than 1 hr of testing: $1,600.

    I don't understand all the dynamics and emotions involved, but for a few hours during and after I was almost overwhelmed how far I am slipping away from normal as I stood there nake with tubes hanging from personal body parts- front and back in the presence of people I had never met before. they made me feel as comfortable as possible, the I will say, the whole think is a bit socially ackward, to say the least. A year ago I never even knew such procedures existed and now I am on the receiving end of them.

    My, I am really upset with PC.

    Just a bit of venting here. Sorry. I will be better later.

    Urodynamics ordeal
    The worse part for me was when they ripped the tape off all the probes they had stuck in my "exit only" orifices.
  • Trew
    Trew Member Posts: 932 Member

    Urodynamics ordeal
    The worse part for me was when they ripped the tape off all the probes they had stuck in my "exit only" orifices.

    OUCH!!
    I remember that part, too.
    I wondered what the enema was for. Surprise!!
    So nice to be able to touch base with a kindred spirit who has shared the same ordeal.
  • Trew
    Trew Member Posts: 932 Member
    Trew said:

    OUCH!!
    I remember that part, too.
    I wondered what the enema was for. Surprise!!
    So nice to be able to touch base with a kindred spirit who has shared the same ordeal.

    The other shoe drops in the
    The other shoe drops in the morning: Cystoscopy at 9 am.

    Maybe all I need is a little scare tissue removed and everything will be fine? Maybe.

    I'm still a little tender from Tuesday- I hope this goes alright.
  • Trew
    Trew Member Posts: 932 Member
    Trew said:

    The other shoe drops in the
    The other shoe drops in the morning: Cystoscopy at 9 am.

    Maybe all I need is a little scare tissue removed and everything will be fine? Maybe.

    I'm still a little tender from Tuesday- I hope this goes alright.

    The scoping is done
    Well, that went very well. The root canal on the lower end is done. the whole process is indeed a memorable one no doubt and will be long remembered and cherished as part of my PC experience. A stricture has been widened, and I can now pee better. I just love how modern medicine works.

    Now, I am going to enjoy a few hours of rest and the vicodin and the memories. The doc hinted at another round of wiring to see how the kegels are being done. Maybe a few other possibilities in therapy and then more on installing the AUS, if it comes down to that.

    IF any of you heard anyone say, "Its just PC," please, kick them for me. Kick them hard.

    And, I am very glad I changed doctors. That was a good move on my part.
  • lewvino
    lewvino Member Posts: 1,010
    Trew said:

    The scoping is done
    Well, that went very well. The root canal on the lower end is done. the whole process is indeed a memorable one no doubt and will be long remembered and cherished as part of my PC experience. A stricture has been widened, and I can now pee better. I just love how modern medicine works.

    Now, I am going to enjoy a few hours of rest and the vicodin and the memories. The doc hinted at another round of wiring to see how the kegels are being done. Maybe a few other possibilities in therapy and then more on installing the AUS, if it comes down to that.

    IF any of you heard anyone say, "Its just PC," please, kick them for me. Kick them hard.

    And, I am very glad I changed doctors. That was a good move on my part.

    So glad to hear that things
    So glad to hear that things are looking up for you!

    Larry
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    Trew said:

    The scoping is done
    Well, that went very well. The root canal on the lower end is done. the whole process is indeed a memorable one no doubt and will be long remembered and cherished as part of my PC experience. A stricture has been widened, and I can now pee better. I just love how modern medicine works.

    Now, I am going to enjoy a few hours of rest and the vicodin and the memories. The doc hinted at another round of wiring to see how the kegels are being done. Maybe a few other possibilities in therapy and then more on installing the AUS, if it comes down to that.

    IF any of you heard anyone say, "Its just PC," please, kick them for me. Kick them hard.

    And, I am very glad I changed doctors. That was a good move on my part.

    Dilation procedure
    Did the doctor tell you how "wide" they dilated you? It's usually stated in "French units". I had this procedure done (for scar tissue) at Johns Hopkins -- no drugs, no anesthesia -- you just laid there and took it like a man. This is the procedure that I think led to my incontinence. They started with a "12 French" and widened it to "22 French", which my current urologist said "I wouldn't have done it that much". I was recovering from PC great -- very little if any dribbles -- until scar tissue made it difficult to pee and then the procedure..... I'd love to know what your doctor did.
  • Trew
    Trew Member Posts: 932 Member

    Dilation procedure
    Did the doctor tell you how "wide" they dilated you? It's usually stated in "French units". I had this procedure done (for scar tissue) at Johns Hopkins -- no drugs, no anesthesia -- you just laid there and took it like a man. This is the procedure that I think led to my incontinence. They started with a "12 French" and widened it to "22 French", which my current urologist said "I wouldn't have done it that much". I was recovering from PC great -- very little if any dribbles -- until scar tissue made it difficult to pee and then the procedure..... I'd love to know what your doctor did.

    How It Went
    All I know is that first he injected me with a pain killer- I can't imagine what it would have been like without the shot- then he ran a very large tube down me- this is the 2nd time after his initial scoping- and then he started pushing wire down into the tube- much like the file stuff a dentist uses in a root canal- each wire a different coarseness. I think there were 3 filings- but by them I was just moaning softly to myself and wondering if we would be done by Xmas. He did not mention size of opening, nor did I ask. I did not what to spark any further interest on his part in extending the procedure.

    And some people simply have a prostate removed and are dry 3 or 4 weeks later! IF I was one of those guys and reading my postings- or yours Skid row- I would give a prayer of thanksgiving every morning and night. And after all this I am still a T4 with a good chance of recurrance. Now wouldn't that be icing on the cake!!

    Have I ever stated before that I really really hate PC?

    And yes, once again, for all practical matters, I was naked in the presence of a strangers- a doctor and his nurse assistant.

    My, but I do hate PC!