AUS 800 Problem

harvs
harvs Member Posts: 54
Hello Friends,

Had AUS installed in 2007
It was a real game changer, went from 6-8 pads a day to barely 1.
Unfortunately, leaking has been slowly increasing over the last 10-12 months and now up to 2 full pads a day.
Initial thought was that there was a leak, so Doc ordered an ultrasound. Reservoir looks full, so no leak.
Latest theory is that the urethra has started to atrophy where the cuffs are (got 2 of 'em).
So they want to replace the cuffs with a smaller size. But, as long as they’re in there, they’ll just rip out the whole thing and start over. - - replace it all.

Anyone had any similar experience?

Thanks

Comments

  • guards
    guards Member Posts: 72
    Harvs mine was worse after abuot a year started leaking suddenly , I had developed a small leak in one of the cuffs. But didn't know that till after surgery. All that said the plan had been to replace the entire thing all along and the did just that. No problems much easier surgery, Doc was going to turn on much sooner but I still had swelling and had to strain a bit to pass liquid so we just waited the 6 weeks to turn on. I now get a little more spotting from coughing etc but pretty much back to normal. They also talked smaller cuffs but since it was only 1 year and the leak was there they used the same size cuffs.
  • VascodaGama
    VascodaGama Member Posts: 3,515 Member
    guards said:

    Harvs mine was worse after abuot a year started leaking suddenly , I had developed a small leak in one of the cuffs. But didn't know that till after surgery. All that said the plan had been to replace the entire thing all along and the did just that. No problems much easier surgery, Doc was going to turn on much sooner but I still had swelling and had to strain a bit to pass liquid so we just waited the 6 weeks to turn on. I now get a little more spotting from coughing etc but pretty much back to normal. They also talked smaller cuffs but since it was only 1 year and the leak was there they used the same size cuffs.

    Helpful information

    I am sorry to read about your continuous incontinence problem. Hopefully you get the AUS repaired/replaced and return to normal living. Here you have a list of links with regards to AUS/AMS 800 and incontinence issues posted in this forum.
    http://csn.cancer.org/board_search/126?filter0=AUS+800+&edit[form_token]=e39a46a2f6acfea28d0a37461e587134

    Best.
    VG
  • Jw-pete
    Jw-pete Member Posts: 5
    edited April 2020 #4
    AUS 800 Problems

    Very few comments here and quite old, are there any updated experiences?

  • Georges Calvez
    Georges Calvez Member Posts: 546 Member
    Newer thread
    Hi there,

    More extensive and up to date thread here;
    https://csn.cancer.org/node/311284

    Best wishes,

    Georges
  • Josephg
    Josephg Member Posts: 317 Member
    edited April 2020 #6

    Hi JW,

    Sorry for the late reply, but I had some issues posting to CSN, which have now been resolved.

    I've had 2 AMS800 implants, the most recent being in the fall of 2019.  My first AMS800 lasted for over 6 years, before failing.  Clearly, I would not have gone for a second implant, if I were not satisfied with the first implant.

    Simply put, if you are vertically incontinent, and if it is negatively impacting you desired quality of life, then an AMS800 is absolutely a gamechanger in restoring your quality of life from a continence standpoint.  For me, my vertical incontinence limited my going out of my home for more than 3-4 hours at a time, as I would fill my Depends, and urine would start to leak out through my pants.  For example, if I was visiting at a friend's house, I could not sit down, as my leaking urine would leak onto their furniture.  For me, this incontinence situation was unacceptable from the standpoint of quality of life.

    I looked at the various incontinence slings that were available on the market as well as the AMS800, and I consulted with my Urologist Surgeon.  He advised me that the results from sling implants varied considereably, with the best results representing only marginal improvements in overall incontinence.  As such, he recommended the AMS800 implant to me as being the choice for the best and most consistent positive outcome for eliminating incontinence.

    I will tell you that the surgery to implant an AMS800 is not trivial, and the recovery will take a while, up to 6 months for everything to settle down and become fully routine.  That being said,  you will become ambulatory within a few days after surgery, and be able to perform basic activities as well as before the surgery.  The return to 'normal' life can be achieved within 6-8 weeks, when the AMS800 implant is activated by your surgeon.

    You can read about my experiences by going to the link below, which is my personal 3-month update thread.  Scroll down to the update dated January 17, 2020, and at the end of that update, you will find links to my specific posts about my AMS800 implant experiences.

    https://csn.cancer.org/node/299431

    I wish you the best of outcomes in your search for incontinence solutions.

  • Jw-pete
    Jw-pete Member Posts: 5
    edited April 2020 #7
    Josephg said:

    Hi JW,

    Sorry for the late reply, but I had some issues posting to CSN, which have now been resolved.

    I've had 2 AMS800 implants, the most recent being in the fall of 2019.  My first AMS800 lasted for over 6 years, before failing.  Clearly, I would not have gone for a second implant, if I were not satisfied with the first implant.

    Simply put, if you are vertically incontinent, and if it is negatively impacting you desired quality of life, then an AMS800 is absolutely a gamechanger in restoring your quality of life from a continence standpoint.  For me, my vertical incontinence limited my going out of my home for more than 3-4 hours at a time, as I would fill my Depends, and urine would start to leak out through my pants.  For example, if I was visiting at a friend's house, I could not sit down, as my leaking urine would leak onto their furniture.  For me, this incontinence situation was unacceptable from the standpoint of quality of life.

    I looked at the various incontinence slings that were available on the market as well as the AMS800, and I consulted with my Urologist Surgeon.  He advised me that the results from sling implants varied considereably, with the best results representing only marginal improvements in overall incontinence.  As such, he recommended the AMS800 implant to me as being the choice for the best and most consistent positive outcome for eliminating incontinence.

    I will tell you that the surgery to implant an AMS800 is not trivial, and the recovery will take a while, up to 6 months for everything to settle down and become fully routine.  That being said,  you will become ambulatory within a few days after surgery, and be able to perform basic activities as well as before the surgery.  The return to 'normal' life can be achieved within 6-8 weeks, when the AMS800 implant is activated by your surgeon.

    You can read about my experiences by going to the link below, which is my personal 3-month update thread.  Scroll down to the update dated January 17, 2020, and at the end of that update, you will find links to my specific posts about my AMS800 implant experiences.

    https://csn.cancer.org/node/299431

    I wish you the best of outcomes in your search for incontinence solutions.

    Thanks, information is

    Thanks, information is encouraging. My surgery is Thursday, I am convinced I wznt the AUS. Presently I do not leak at night. I wear a dribble stop during tbe day and take it off at night. I am a beer drinker, but quit 2-3 hkurs prior to bed. My biggest leakage problem occurs when I eat unfriendly bladder foods like hot and spicy, acidic food. Doy you have problems with What you eat. Looking forward to a bloddy mary. 

    I have another website i am a member of and it mostly recommends the AUS.

  • Josephg
    Josephg Member Posts: 317 Member
    edited April 2020 #8
    Jw-pete said:

    Thanks, information is

    Thanks, information is encouraging. My surgery is Thursday, I am convinced I wznt the AUS. Presently I do not leak at night. I wear a dribble stop during tbe day and take it off at night. I am a beer drinker, but quit 2-3 hkurs prior to bed. My biggest leakage problem occurs when I eat unfriendly bladder foods like hot and spicy, acidic food. Doy you have problems with What you eat. Looking forward to a bloddy mary. 

    I have another website i am a member of and it mostly recommends the AUS.

    Food Selection

    I do not see any differences in the level of incontinence, based upon eating different foods.  I do experience a 'loosening' of my own natural, and mostly inoperative, sphincter muscle when I drink alcohol or caffeinated coffee.

  • Jw-pete
    Jw-pete Member Posts: 5
    edited April 2020 #9
    Josephg said:

    Food Selection

    I do not see any differences in the level of incontinence, based upon eating different foods.  I do experience a 'loosening' of my own natural, and mostly inoperative, sphincter muscle when I drink alcohol or caffeinated coffee.

    Thanks, also I have been

    Thanks, also I have been wearing a dribble stop for the last year, been a life changer. Only wear it during the day and a light Tena pad in case I eat something acidic. Advertisement says you never know it's there, thats a lie, always know its there. Gonna ask if I can wear it during the recovery time. Been on decaf coffee you years due to sleep problems fror VN PTSD, still drinking it, but limited amount. Prostate Cancer is due to Agent Oange. I am 74 fortunately otherwise healthy and active. You're been a great help, Pre Op and decision day is tomorrow, surgery scheduled Thursday, will let you know. I also get information from a website called inspire which has been helpful.

  • Josephg
    Josephg Member Posts: 317 Member
    Jw-pete said:

    Thanks, also I have been

    Thanks, also I have been wearing a dribble stop for the last year, been a life changer. Only wear it during the day and a light Tena pad in case I eat something acidic. Advertisement says you never know it's there, thats a lie, always know its there. Gonna ask if I can wear it during the recovery time. Been on decaf coffee you years due to sleep problems fror VN PTSD, still drinking it, but limited amount. Prostate Cancer is due to Agent Oange. I am 74 fortunately otherwise healthy and active. You're been a great help, Pre Op and decision day is tomorrow, surgery scheduled Thursday, will let you know. I also get information from a website called inspire which has been helpful.

    Good Luck!

    I wish you the best or outcomes.