AMS 800 artificial urinary sphincter

1679111218

Comments

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

    Artificial Urinary Sphincter
    Hello harvs,
    I see your last post was in March of 2010 and I'm hoping you are still happy with your AMS800. I'm considering having the surgery and wanted to communicate with someone who had the surgery.
    I had prostate cancer and surgery three years ago, and my incontinence never improved. I go through 8-10 soaked pads a day and I tried all of the following: Physical therapy, cytoscopy, biofeedback, Kegels, exercise = no improvement and no obstructions.

    I'm concerned I might not be able to ride my motorcycle or bicycle after this surgery but
    so frustrated with the incontinence I am willing to go for it. I would love to be able to communicate with you or anyone else you might know of or other online support groups for AUS. I know there must be others who have had this surgery but can't find them in online support groups. You are the first person I have come across. Would so appreciate hearing from you.

    Thanks for any help you can provide.
    Rembrant

    AMS 800
    I had an AMS 800 implanted in 2007. I've been riding my motorcycle ever since. What do you need to know?
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    Rembrant said:

    Artificial Urinary Sphincter
    Hello harvs,
    I see your last post was in March of 2010 and I'm hoping you are still happy with your AMS800. I'm considering having the surgery and wanted to communicate with someone who had the surgery.
    I had prostate cancer and surgery three years ago, and my incontinence never improved. I go through 8-10 soaked pads a day and I tried all of the following: Physical therapy, cytoscopy, biofeedback, Kegels, exercise = no improvement and no obstructions.

    I'm concerned I might not be able to ride my motorcycle or bicycle after this surgery but
    so frustrated with the incontinence I am willing to go for it. I would love to be able to communicate with you or anyone else you might know of or other online support groups for AUS. I know there must be others who have had this surgery but can't find them in online support groups. You are the first person I have come across. Would so appreciate hearing from you.

    Thanks for any help you can provide.
    Rembrant

    AMS 800
    I had an AMS 800 implanted in 2007. I've been riding my motorcycle ever since. What do you need to know?
  • Pointman
    Pointman Member Posts: 1
    Trew said:

    Important Question RE
    Harvs, do you need to carry some sort of medical ID just in case you are knocked unconscious- you would not release urine unless someone pushed the start button for you- right?

    And did you have to have a cath in a few days after getting the device implanted?

    I have no questions about modesty- that all was lost with the first surgery.

    Medical ID / Tatoo
    I am about 3 yrs post op and quite leakey, after a DaVinci surgery which was converted to open surgery. In my opinion the DaVinci surgery was way oversold by my doctor. To say I am disappointed is an uderstatement. Regarding the AMS 800 AUS (artificial urinary sphincter), if I decide to do this and I am leaning toward it, I will be getting tatoo above my groin. I don't want some nurse ramming a large catheter in me and ruining the device. Just a thought. Doc said it was an excellent idea...
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    Pointman said:

    Medical ID / Tatoo
    I am about 3 yrs post op and quite leakey, after a DaVinci surgery which was converted to open surgery. In my opinion the DaVinci surgery was way oversold by my doctor. To say I am disappointed is an uderstatement. Regarding the AMS 800 AUS (artificial urinary sphincter), if I decide to do this and I am leaning toward it, I will be getting tatoo above my groin. I don't want some nurse ramming a large catheter in me and ruining the device. Just a thought. Doc said it was an excellent idea...

    Medical ID
    This is a concern. The big fear, of course, is if you are unconscious and can't speak for yourself. I've had an AUS for six years. I haven't run into a "regular" doctor yet that has even heard of an AUS -- kinda scarey. If and when you get one, get a medical ID made ASAP. This can be a necklace or bracelet. I also have a card in my wallet and the medical information programmed into my cell phone under "ICE". My advice if you enter a hospital for a non-related surgery or procedure -- tell EVERYBODY you come in contact with, including the admiting clerk, the nurses, the operating doctor, the gas man, etc. Make sure it's on your chart. And have your wife or friend around to remind (nag) people about it.
  • Itzagift
    Itzagift Member Posts: 12 Member

    Medical ID
    This is a concern. The big fear, of course, is if you are unconscious and can't speak for yourself. I've had an AUS for six years. I haven't run into a "regular" doctor yet that has even heard of an AUS -- kinda scarey. If and when you get one, get a medical ID made ASAP. This can be a necklace or bracelet. I also have a card in my wallet and the medical information programmed into my cell phone under "ICE". My advice if you enter a hospital for a non-related surgery or procedure -- tell EVERYBODY you come in contact with, including the admiting clerk, the nurses, the operating doctor, the gas man, etc. Make sure it's on your chart. And have your wife or friend around to remind (nag) people about it.

    AUS Tattoo
    I've been "lurking" on this thread (and many other sites concerning AUS's, cancers and heart issues) for some time as I was in the process of going thru the urodynamic tests to get an AMS800. When I began this, my third attempt in 12 years at getting the incontinence thing under control, I told a bunch of people that a tattoo was the only sure way to make a notification of catheter danger obvious to medical folks. I've been in the ER MANY times and no one has ever asked that question and I fully expect none ever will in the future.

    My AUS was installed May 30 and gets turned on July 10. (I'm still sitting on a thick pillow even as I type this.) As soon as I know it works OK, it's my plan to get that permanent caution sign installed in addition to the medic alert bracelet and wallet card. Hospitals are dangerous places...you can get seriously killed there, not to mention all the pipes and plumbing they poke and prod you with.
  • Rembrant said:

    Artificial Urinary Sphincter
    Hello harvs,
    I see your last post was in March of 2010 and I'm hoping you are still happy with your AMS800. I'm considering having the surgery and wanted to communicate with someone who had the surgery.
    I had prostate cancer and surgery three years ago, and my incontinence never improved. I go through 8-10 soaked pads a day and I tried all of the following: Physical therapy, cytoscopy, biofeedback, Kegels, exercise = no improvement and no obstructions.

    I'm concerned I might not be able to ride my motorcycle or bicycle after this surgery but
    so frustrated with the incontinence I am willing to go for it. I would love to be able to communicate with you or anyone else you might know of or other online support groups for AUS. I know there must be others who have had this surgery but can't find them in online support groups. You are the first person I have come across. Would so appreciate hearing from you.

    Thanks for any help you can provide.
    Rembrant

    ams800
    Hello my name is Bill and i had the AMS800 put in 11 yrs ago. what a wonderful thing.
    I to was a bike rider about 150 miles a week . The ams800 stopped that but it was worth it.
    The reason i noticed your post i was looking for info on the ams800 because mine stopped working about two mo ago and will see my dr next week. Wanted to update myself on what may be wrong. For the ams800 i have been very happy with it and up to now no problems at all.
    Looks like part or all of it may need to be replaced.
    Any questions contact me at [email protected].net
    Bill
    Age 75
  • Africanpaddler
    Africanpaddler Member Posts: 2
    harvs said:

    Seat
    I use the Easyseat II form Hobson - works geat.

    Hobson Easyseat II ??
    Hi Harvs and all other members

    I had a RP in March 2005. Incontinent since and deteriorating. I am getting an AUS (the AMS 800) fitted this week here in Port Elizabeth South Africa.

    I am going to miss cycling and saw references to the Hobson Easyseat II. Are all users happy with it in combination with the AUS? I am going to have to import one and the pricetag here in SA is the equivalent of eight cases of beer, or eight bottles of Bells Scotch Whisky, so this is an important decision; either become an alky or get fit again!
  • Africanpaddler
    Africanpaddler Member Posts: 2
    harvs said:

    Seat
    I use the Easyseat II form Hobson - works geat.

    Hobson Easyseat II ??
    Hi Harvs and all other members

    I had a RP in March 2005. Incontinent since and deteriorating. I am getting an AUS (the AMS 800) fitted this week here in Port Elizabeth South Africa.

    I am going to miss cycling and saw references to the Hobson Easyseat II. Are all users happy with it in combination with the AUS? I am going to have to import one and the pricetag here in SA is the equivalent of eight cases of beer, or eight bottles of Bells Scotch Whisky, so this is an important decision; either become an alky or get fit again!
  • mrspjd
    mrspjd Member Posts: 694 Member

    Hobson Easyseat II ??
    Hi Harvs and all other members

    I had a RP in March 2005. Incontinent since and deteriorating. I am getting an AUS (the AMS 800) fitted this week here in Port Elizabeth South Africa.

    I am going to miss cycling and saw references to the Hobson Easyseat II. Are all users happy with it in combination with the AUS? I am going to have to import one and the pricetag here in SA is the equivalent of eight cases of beer, or eight bottles of Bells Scotch Whisky, so this is an important decision; either become an alky or get fit again!

    Bike seats, biking and PCa
    Afri,

    You might find some helpful info about bike seats, biking & PCa on the following thread:
    http://csn.cancer.org/node/200264
    It probably wouldn’t hurt to repost your question on that thread also. Good luck.

    mrs pjd
  • JUMBO JIMBO
    JUMBO JIMBO Member Posts: 2

    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

    AUR - AMS800
    TOM, I'M NEW TO THIS "SCENE" BUT I WANTED TO CONTACT YOU SINCE YOU PROMISED SPECIFIC ANSWERS. I WANT TO ASK YOU A QUESTION THAT I HAVEN'T SEEN APPEAR IN THIS COLUMN -

    HOW MUCH DID THIS PROCEDURE COST AND DID YOUR INSURANCE COVER ANY OF IT?

    I AM 65 YEARS OLD, 10 YEARS POST SURGERY AND ONLY INCONTINENT FOR ABOUT 1 YEAR. MY UROLOGIST SAYS THERE'S NOTHING MORE HE CAN DO FOR ME, SO I AM STRUGGLING BY WITH 4-5 PADS A DAY (PLUS THE CUNNINGHAM CLAMP AND ONE SOAKING NIGHT PAD).

    THANKS FOR ANY LIGHT YOU CAN SHED

    JIM
  • JH
    JH Member Posts: 1

    Medical ID
    This is a concern. The big fear, of course, is if you are unconscious and can't speak for yourself. I've had an AUS for six years. I haven't run into a "regular" doctor yet that has even heard of an AUS -- kinda scarey. If and when you get one, get a medical ID made ASAP. This can be a necklace or bracelet. I also have a card in my wallet and the medical information programmed into my cell phone under "ICE". My advice if you enter a hospital for a non-related surgery or procedure -- tell EVERYBODY you come in contact with, including the admiting clerk, the nurses, the operating doctor, the gas man, etc. Make sure it's on your chart. And have your wife or friend around to remind (nag) people about it.

    Medical ID
    Where did you get your medical ID and what language did you have engraved on it. I agree it's important to have it for the reasons you stated.
  • limpndamp
    limpndamp Member Posts: 7
    AMS 800 AUS
    To those of you with an AUS, do you still have to wear a pad?

    I had DaVinci RP in February 2010. A year later I was down to one pad per day, and it wasn't very used. So I decided to have the Advance sling implanted, figuring that would solve the incontinence. Well, that surgery actually backfired. Although I still only use one pad per day, it's usually pretty used up. And I have to wear an incontinence clamp to play golf, or else it would take two pads to get through 18 holes.

    I've seen the urinary doctors at Duke, to get their input for my alternatives. They immediately recommended the AUS. But if the AUS does not eliminate the need for a pad, then I may not have the procedure. (I don't mind wearing a pad to golf, but I'd like to not have to wear the clamp.)

    BTW - I learned a new term while I was at Duke. "Social Continence". According to the urologists of the world, if you are only using one pad per day, you are considered "socially continent". I guess this helps the statistics. I told them this is like being "slightly pregnant".
  • lychee
    lychee Member Posts: 5
    RP /Sling/Proton/ASU over 7 years
    Hello I had DaVinci RP seven years ago and after 3 years I had a Advance Sling installed without much help. 5 years after RP my cancer came back and I was treated with Proton Therapy. 2 years after Proton my sphincter got worse 5 pads per day and I had a ASU installed on Nov.2011 6 months after this operation I am “Social Continence” One large gard pad will last all day if I work hard or light pad if not. I am a happy 74 year old with my one pad per day and would recommend this operation to anyone, As for the bulb in my sack it is not noticeable from the inside or out side. After a few months I have learned to step up to the Urinal with the other guys, The technique I use is to lift my sack over the top of my shorts which controls the aiming angle so I can use both hand to squeeze the bulb.My ASU bulb placement is at the very top right hand side of my sack. The reason for two hands is the bulb very slippery inside the sack, one light touch will open it for flow. I use Tri Mix to take care of my other friend down there. Would be happy to answer any questions and give info on my Dr. in South Fla. Lychee
    .
  • tpelle
    tpelle Member Posts: 184
    lychee said:

    RP /Sling/Proton/ASU over 7 years
    Hello I had DaVinci RP seven years ago and after 3 years I had a Advance Sling installed without much help. 5 years after RP my cancer came back and I was treated with Proton Therapy. 2 years after Proton my sphincter got worse 5 pads per day and I had a ASU installed on Nov.2011 6 months after this operation I am “Social Continence” One large gard pad will last all day if I work hard or light pad if not. I am a happy 74 year old with my one pad per day and would recommend this operation to anyone, As for the bulb in my sack it is not noticeable from the inside or out side. After a few months I have learned to step up to the Urinal with the other guys, The technique I use is to lift my sack over the top of my shorts which controls the aiming angle so I can use both hand to squeeze the bulb.My ASU bulb placement is at the very top right hand side of my sack. The reason for two hands is the bulb very slippery inside the sack, one light touch will open it for flow. I use Tri Mix to take care of my other friend down there. Would be happy to answer any questions and give info on my Dr. in South Fla. Lychee
    .

    Lychee: Would you tell us
    Lychee: Would you tell us what type of leakage you experienced. I don't leak while in bed except a drop or so changing positions. Where there is urine in the bladder I leak sitting down or getting out of my computer chair or recliner. I leak all the time when standing (yard work, house work, shopping, treadmill walking, etc). When I get back to the house, the bladder is always empty and the pad full. Yet my total leakage averages 7.9 fluid oz per day, using about 2.3 Depends pads per day on the average. I have an appointment in mid-December with a U.C.Med vice chair of the department of urology to see to see if an AdVance sling, or even an AUS 800 would be appropriate for me. I'm ten years since RPS and PSA remains at <.01. Any comments would be appreciated. tpelle
  • lychee
    lychee Member Posts: 5
    tpelle said:

    Lychee: Would you tell us
    Lychee: Would you tell us what type of leakage you experienced. I don't leak while in bed except a drop or so changing positions. Where there is urine in the bladder I leak sitting down or getting out of my computer chair or recliner. I leak all the time when standing (yard work, house work, shopping, treadmill walking, etc). When I get back to the house, the bladder is always empty and the pad full. Yet my total leakage averages 7.9 fluid oz per day, using about 2.3 Depends pads per day on the average. I have an appointment in mid-December with a U.C.Med vice chair of the department of urology to see to see if an AdVance sling, or even an AUS 800 would be appropriate for me. I'm ten years since RPS and PSA remains at <.01. Any comments would be appreciated. tpelle</p>

    Lychee to Tpelle
    Hi Tpelle Sorry this was not a quick reply , I had leaked like you after my RP using lots of pads climbing ,lifting and working. I would used a guards up in 3 to 4 hours. At night a guard for protection maybe dry in the morning. After my Proton treatment my pad count got worse,with no work 2 to 3 pads per day, working it was double,and a little wet at night. I waited a year after proton treatment and chose to have a AUS800 installed. I am about a year after having it installed and very happy with the outcome, not totally dry but have Social Continence,I have a decision to make weather to have it removed and replace or just live with it, to be decided later.I would not go through having a sling install the operation takes the same time and also six weeks on no lifting and light work. I only gained a little less pad usage. If I were in your shoe at this point I would have a AUS installed ASAP. The operation was simple outpatient a catheter for one week and 6 weeks till AUS was turned on.( During the weeks from catheter removal till turn on I would advise using a condom catheter this makes life much simpler, remember your on full flow) I use about 2 to 3 medium lady’s pads per day that will cover night time use also. The AUS really is simple to use, only a slight touch turns it on, but no one tells you it takes 2 minuets to turn off, but since I have a pad I don’t have to wait.
    PS.Medicare will provide you these for free, ask your Uro , he will give you some samples , and watch for adds on TV (Liberty) sign up for 3 month and you will have extras, very simple and easy to use.I think you can e-mail me for more info. Hope this is of interest and has helped you
  • golfbol
    golfbol Member Posts: 1
    lychee said:

    Lychee to Tpelle
    Hi Tpelle Sorry this was not a quick reply , I had leaked like you after my RP using lots of pads climbing ,lifting and working. I would used a guards up in 3 to 4 hours. At night a guard for protection maybe dry in the morning. After my Proton treatment my pad count got worse,with no work 2 to 3 pads per day, working it was double,and a little wet at night. I waited a year after proton treatment and chose to have a AUS800 installed. I am about a year after having it installed and very happy with the outcome, not totally dry but have Social Continence,I have a decision to make weather to have it removed and replace or just live with it, to be decided later.I would not go through having a sling install the operation takes the same time and also six weeks on no lifting and light work. I only gained a little less pad usage. If I were in your shoe at this point I would have a AUS installed ASAP. The operation was simple outpatient a catheter for one week and 6 weeks till AUS was turned on.( During the weeks from catheter removal till turn on I would advise using a condom catheter this makes life much simpler, remember your on full flow) I use about 2 to 3 medium lady’s pads per day that will cover night time use also. The AUS really is simple to use, only a slight touch turns it on, but no one tells you it takes 2 minuets to turn off, but since I have a pad I don’t have to wait.
    PS.Medicare will provide you these for free, ask your Uro , he will give you some samples , and watch for adds on TV (Liberty) sign up for 3 month and you will have extras, very simple and easy to use.I think you can e-mail me for more info. Hope this is of interest and has helped you

    AMS800
    Hi to all who might read this. I've been reading a lot of posts trying to find some answers to my problems. Had prostate cancer fifteen years ago, had operation plus six weeks of radiation. Everything has gone well until this February when I closed up entirely and had to be dialated. From that point on it was total incontinence.

    In August I went to the Mayo Clinic in Rochester, MN for the AMS800 implant. It worked reasonably well for three months and now, all of a sudden I'm nearly 100% incontinent again. I noticed that you said the pump was very easy to press. Mine is almost rock hard and I have to grip the tubes very firmly. Also, my pump it so high that it is very hard to get hold of.

    I have purposely made this as short as possible giving just the specifics. If anyone seeing this has any comments or have experienced the same thing I would really like to hear from you. Thanks and my best to all of you.
  • lychee
    lychee Member Posts: 5
    golfbol said:

    AMS800
    Hi to all who might read this. I've been reading a lot of posts trying to find some answers to my problems. Had prostate cancer fifteen years ago, had operation plus six weeks of radiation. Everything has gone well until this February when I closed up entirely and had to be dialated. From that point on it was total incontinence.

    In August I went to the Mayo Clinic in Rochester, MN for the AMS800 implant. It worked reasonably well for three months and now, all of a sudden I'm nearly 100% incontinent again. I noticed that you said the pump was very easy to press. Mine is almost rock hard and I have to grip the tubes very firmly. Also, my pump it so high that it is very hard to get hold of.

    I have purposely made this as short as possible giving just the specifics. If anyone seeing this has any comments or have experienced the same thing I would really like to hear from you. Thanks and my best to all of you.

    AMS800
    Sorry to hear about your problem . Could you have locked out your AMS800 and just need to open it. If you have problems pressing the bulb look up how to unlock it's easy and go through the steps.My bulb is very high but I think I like it I can go up to any urinal open my belt and fly and place my shorts elastic under my sack and with one hand hold the pump body and squeeze the bulb.I can feel only 1/2 inch of the tubes behind the AMS till they disappear in my body,the Dr. tried to pull the out more but no help. The Dr said to me the bulb would be hard with a dimple in the middle if it locked out properly. That my 2cents, best of luck Lychee
  • tpelle
    tpelle Member Posts: 184
    lychee said:

    Lychee to Tpelle
    Hi Tpelle Sorry this was not a quick reply , I had leaked like you after my RP using lots of pads climbing ,lifting and working. I would used a guards up in 3 to 4 hours. At night a guard for protection maybe dry in the morning. After my Proton treatment my pad count got worse,with no work 2 to 3 pads per day, working it was double,and a little wet at night. I waited a year after proton treatment and chose to have a AUS800 installed. I am about a year after having it installed and very happy with the outcome, not totally dry but have Social Continence,I have a decision to make weather to have it removed and replace or just live with it, to be decided later.I would not go through having a sling install the operation takes the same time and also six weeks on no lifting and light work. I only gained a little less pad usage. If I were in your shoe at this point I would have a AUS installed ASAP. The operation was simple outpatient a catheter for one week and 6 weeks till AUS was turned on.( During the weeks from catheter removal till turn on I would advise using a condom catheter this makes life much simpler, remember your on full flow) I use about 2 to 3 medium lady’s pads per day that will cover night time use also. The AUS really is simple to use, only a slight touch turns it on, but no one tells you it takes 2 minuets to turn off, but since I have a pad I don’t have to wait.
    PS.Medicare will provide you these for free, ask your Uro , he will give you some samples , and watch for adds on TV (Liberty) sign up for 3 month and you will have extras, very simple and easy to use.I think you can e-mail me for more info. Hope this is of interest and has helped you

    AUS800 It Is
    Thanks, lychee, for your help. I saw Dr. Anthony Stone Vice Chair of Urology at U.C.Med-Davis (CA) today. After the usual preliminary questions and his review of my records, he said he would do the AMS AdVance Sling or the AUS800, depending on the condition of the sphincter. The large monitor was immediately next to me when he did the cystoscopy. He pointed out what appeared to be an irregular sphincter orifice, the main part closing, but always a small section at 6 o'clock remaining open -- thus the continuing drippage, except while I was in bed, or sometimes when seated. With no hesitation, I scheduled Feb 6 as the procedure date, his earliest appointment. He said he had done hundreds successfully around the world. He's a 1969 grad of University of Edinburgh and was Chief Resident of Urology at Duke University Med Center in the mid-80's. Lots of honors, awards and publications. I liked his easy manner and willingness to answer questions. As you can see I'm trying to get psyched up! Again, thanks. tpelle
  • YTW
    YTW Member Posts: 67
    JH said:

    Medical ID
    Where did you get your medical ID and what language did you have engraved on it. I agree it's important to have it for the reasons you stated.

    medical ID bracelet.
    Most drug stores sell them They are very inexpensive. You dont have them engraved. They open up and you put a written message in them


    Jimmy/Cleveland
  • tpelle
    tpelle Member Posts: 184
    golfbol said:

    AMS800
    Hi to all who might read this. I've been reading a lot of posts trying to find some answers to my problems. Had prostate cancer fifteen years ago, had operation plus six weeks of radiation. Everything has gone well until this February when I closed up entirely and had to be dialated. From that point on it was total incontinence.

    In August I went to the Mayo Clinic in Rochester, MN for the AMS800 implant. It worked reasonably well for three months and now, all of a sudden I'm nearly 100% incontinent again. I noticed that you said the pump was very easy to press. Mine is almost rock hard and I have to grip the tubes very firmly. Also, my pump it so high that it is very hard to get hold of.

    I have purposely made this as short as possible giving just the specifics. If anyone seeing this has any comments or have experienced the same thing I would really like to hear from you. Thanks and my best to all of you.

    Locked Out
    golfbol: Did you solve the rock hard pump problem? I suspect lechee was right when he said "Could you have locked out your AMS800 and just need to open it. If you have problems pressing the bulb look up how to unlock it's easy and go through the steps."

    I found the following in the AMS800 users guide for male patients, which was given to me in anticipation of an AMS800 implant in February. On page 9 "Symptom: The lower portion of the control pump is harder than usual and difficult to squeeze or is squeezed flat and doesn't refill. Possible Cause: Accidental de-activation of the 800. What To Do: Follow the steps for activating your 800 on page 7. Contact your doctor if these attempts fail." Good Luck. tpelle