Artificial Urinary Sphincter Implant (AMS 800) -- help!!!

124

Comments

  • RobLee
    RobLee Member Posts: 269 Member
    edited June 2017 #62
    adwhiz said:

    Ok, my AUS800 is now active!

    Today my friendly urologist activated my implant. I am so hopeful that this will be the solution to my endless (and awful) incontinence. I have mixed emotions at this point, and I suppose after two years of continual incontinence I'm just skeptical that this will really work. Believe me, I am ready and willing to go ahead with the new equipment and learn the best practices to use the implant as rapidly as is possible. In the meantime, I will keep everyone informed as to my progress.

    First AUS revision surgery

    Good luck with your new equipment Adwiz!  I don't remember if I had posted it here, but my implant surgery of three weeks ago had to be revised in emergency surgery last Tuesday, after having Foley catheters for the two weeks between.  It did push my activation back to mid July. Of course I went into this knowing that there is a high rate of revisions, so it was not a complete surprise. Hopefully everything with yours went without a hitch.

  • adwhiz
    adwhiz Member Posts: 9
    RobLee said:

    First AUS revision surgery

    Good luck with your new equipment Adwiz!  I don't remember if I had posted it here, but my implant surgery of three weeks ago had to be revised in emergency surgery last Tuesday, after having Foley catheters for the two weeks between.  It did push my activation back to mid July. Of course I went into this knowing that there is a high rate of revisions, so it was not a complete surprise. Hopefully everything with yours went without a hitch.

    AUS surgery

    Hi again --

    I'm sorry to hear of your difficulties and I know you'll be looking forward to the activation. Mine was activated on Monday and so far so good. After nearly 2 years of steady incontinence and endless Depends pads it's quite amazing to go through the day (and night) with no leakage. I'm certainly not the first and won't be last to say this however I'd do it again in a heartbeat. I'm confident you'll feel the same way, soon.

  • dga5151
    dga5151 Member Posts: 3
    tpelle said:

    AUS800 Activated

    dga - you will be an old "hand" in the new process of peeing in a matter of days!  At first, I occasionally stood at the toilet waiting for the flow, forgetting to turn on the faucet.  Good luck.  tpelle

    Five months post-op

    tpelle,

    You were absolutely correct! Being 5 months post-op, I couldn't be happier with my AUS800. What a relief. Thanks so much for your counsel.

    -dga

  • amargos
    amargos Member Posts: 1
    edited October 2017 #65
    Trew said:

    AUS Surgery Date

    My AUS was installed at the U of MI hospital on Aug 23, 2011.  So this August will be my  2 yr anniversay.  First real positive after that nasty PSA test that started all the trouble.

    I should look into a recumbent bike but I enjoy off road biking a lot.  You are the 2nd person to recommend one. maybe that is what I need, or at least take a look at one.

    If your father would be interested in talking to me on the phone about the AUS I would do that. 

    -Trew

     

     

     

     

    Road bike - Squeezer

    Trew, just read the 6 year string of comments.  I am seriously thinking about the Cuff. (Prostatectomy left me incontinent in 2012)   My solution has been to use the Squeezer Clip (Vitality Medical) in conjunction with Depends.   I ride a Road Bike and the Squeezer makes a difference.  It can create some chafe on a long ride but it allows me to ride and participate in other sports.   If i have the Cuff procedure I guess I'll still need the Squeezer for riding but it will be worth it.   Some insurance policies may pick up some or all of the cost of the Squeezer.

  • kanifee
    kanifee Member Posts: 1
    edited October 2017 #66
    long term 23+ year user of the AUS

    So as my subject line states, 23 years or more of the AUS in my life. Im currently about to have m 2nd AMS800 removed due to errosion. Now hold up, as grim as that sounds it really isn't, try to focus on the 23 year part, for 23 years i have had continance thanks to this device and all of the issues i have faced are worth all the freedom i gained form this little thing. So much so i am currently going through the back and forth with my surgeon to have a third fitted.

    Upfront my incontinance was not cause by a treatmant of cancer, i was born with a condition called epispadius, the basics of are little to no sphynctre muscle and a underdeveloped bladder, my bladder is the size of a wallnut or there abouts when relaxed/empty, full it holds 300ml at most. my first AUS was fitted at age 12, this lasted exactly 10 years and cured complete lack of urine retention with complete continance, dead on the 10 year mark errosion of the urethra and bladder neck set in and the device had to be removed, by this time i had forgot what it was like not to be dry, this was as you can imagine, depressing to say the least. With a period of recovery i was able to have a second fitted much to the doubt of the surgeon on it effectiveness due to the build up of scarring in and around the bladder neck/urethra. Im happy to say that a complete success was achieved, well 95%, i experienced a slight drop in performance but nothing noteworthy and have been happy for the last 13 years, until 3 motnhs ago when errosion occured again.

    currently i am awaiting my appointment for surgery due within the next week or two for removal of my current unit. Needless to say my surgeon, as learnerd as he is, doubts very much a 3rd will be possible, i as you can imagine am fighting my hardest to sway his mind, after being reminded about life without this device, currently cathiterised and deactivated, i will fight until the bitter end to regain even 70% of what i had. 

     

    I stopped in to post this as i feel responsible to convey just how useful and what impact this device can have, any one who has the option i would suggest highly takes it, look into the sugery and what living with one of these entails but i honestly dont think there is a batter solution out there and thechange is massive should you have the success i believe this provides.

     

    My only advice is, as you can imagine, at the 10 year mark, should anyone reach that point, insist on having your unit replaced. the trouble and recovery this will save is priceless. it also means a simple (as simple as it can be) swap out of the unti with no chance of scar damage occuring. Medical profs tend to eeek it out and wait until failure for action, this form experience is the wrong approach.

     

    Good luck to all that read/find this on there travels for information and i hope you can achieve some of the relief in your life i have.

  • lmered
    lmered Member Posts: 7
    edited November 2017 #67
    AUS Experience

    After many years of incontinence which got really bad the last two years I decided to have an AUS installed.  The surgery was Sept 25, 2017 and the surgery went very well, I only needed pain killers for about 3 days.  Some discoloration and swelling of my scrotum but nothing that bad.  Began riding my bike (50 to 70 miles per week) after week 4 with no problems.  I do use a Selle seat which has a center cutout through the entire seat as well as a drop nose.  Had the AUS activated 3 days ago and virtually no leakage at all, well maybe a few drops here and there but a small pad last 24 hrs.  I do notice a little more leakage when I ride my bike.  I am thrilled.  Will check in with doctor this coming Tuesday and follow up3 weeks after that.  Surgery was done by Dr Bregg at Sarasota Memorial Hospital.  He has done hundreds of these surgeries and I am absolutely thrilled with the recovery as well as the results.  I would highly recommend to anyone.  What a life changing experience.  

  • jimmytt3
    jimmytt3 Member Posts: 6
    AMS800

    I had a radical prostatectomy done in March of 2016. In August of 2016 my Uroligist installed an Advance Male Sling System.

    In October and November of 2016 I went through 39 radiation treatments. My incontine was nerely eliminated following the surgery but returned after the radiation treatments and now I am going through 6-8 pads a day and all of the misery that this problem creates.

    In 2017 and early 2018 I was required to have 4 more  surgeries, 2 for Carpel Tunnel and 2 for a Herniated Disk in my neck.

    I had the prostatectomy and the sling mesh surgerys done in Michiganand I’ve now retired and moved to Las Vegas

    I had an appointment with a new Urologist last week and he informed me that a surgical sling mesh surgery should never be done 

    until at least a year after a prostatectomy and radiation andhe is recommending the AMS 800. After 6 surgerys in 2 years I am a little 

    gun shy about being operated on again. I am not afraid of the pain assoc with this but am concerned mostly about my ability to operate the pump. My 2 surgery’s on my right hand and elbow, my dominate ones, have been a complete failure and I have no feelng in my right hand and forearm and I have very little dexterity with it. I also have been diagnosed with Carpel Tunnel and Ulnar nerve damage in my left hand and elbow.  How difficult is this to operate? I don’t want to go through another operation and all of the recovery time involved only to find it impossible to utilize the system.

    Thank you in advance to anyone who can help me with my dilema.

     

  • Bohannonrl
    Bohannonrl Member Posts: 2
    AMS 800

    Im scheduled for an AMS 800 implant next month, does anyone know how long they last before having to be replaced? I had my prostate removied a little over 13 years ago, and after radiation treatments and over time my bladder just doesnt hold like it use too. Which I guess comes with having prostate cancer, however, Ive been off the hormone treatments for about 5 years with my PSA being untraceable. So that part is good.

  • RobLee
    RobLee Member Posts: 269 Member

    AMS 800

    Im scheduled for an AMS 800 implant next month, does anyone know how long they last before having to be replaced? I had my prostate removied a little over 13 years ago, and after radiation treatments and over time my bladder just doesnt hold like it use too. Which I guess comes with having prostate cancer, however, Ive been off the hormone treatments for about 5 years with my PSA being untraceable. So that part is good.

    AMS replacement interval

    I was told it's around every seven years, but it is NOT the lifespan of the device, rather the condition of your anatomy and the urethra in particular that is the primary factor.  As the device operates over the years it erodes the urethra and becomes less effective as tissue loses its integrity.  At a minimum they need to open you up and move the cuff either forward or back more toward the bladder so that it is operating on "fresh" tissue.  While they're in there they just replace everything as after ten years or so then mechanical failures may become more likely.

    So the long and short of it is, if you live another twenty years, you will have it moved and/or replaced twice in that time period. Your urosurgeon will likely inquire about your devices effectiveness and possibly do a cystoscopy before advising relocation and replacement.  Generally that will be every 7-10 years.  One recent poster here has had an AUS since his youth (don't recall his name) but the hope is that as time progresses newer options will become available.

  • Bohannonrl
    Bohannonrl Member Posts: 2
    RobLee said:

    AMS replacement interval

    I was told it's around every seven years, but it is NOT the lifespan of the device, rather the condition of your anatomy and the urethra in particular that is the primary factor.  As the device operates over the years it erodes the urethra and becomes less effective as tissue loses its integrity.  At a minimum they need to open you up and move the cuff either forward or back more toward the bladder so that it is operating on "fresh" tissue.  While they're in there they just replace everything as after ten years or so then mechanical failures may become more likely.

    So the long and short of it is, if you live another twenty years, you will have it moved and/or replaced twice in that time period. Your urosurgeon will likely inquire about your devices effectiveness and possibly do a cystoscopy before advising relocation and replacement.  Generally that will be every 7-10 years.  One recent poster here has had an AUS since his youth (don't recall his name) but the hope is that as time progresses newer options will become available.

    AMS 800 repacement interval

    I know that I need some relief, these pads get expensive, but I still have reservation on the AMS 800. Ive done a lot of review on the AMS 800, and listen to peoples stories and all, but I still have doubt. After 2 fights with cancer, both hips replaced, both shoulders cut on, along with other minor surgeries, Im starting to get gun shy over surgeries. Thanks for you info.

  • Itzagift
    Itzagift Member Posts: 12 Member
    AUS AMS800 Replacement

    How long do they last? It all depends on which set of data you look at. I’ve been researching this subject for quite some time because I’m going to have my complete system replaced in the next few weeks.


    A bit of background. Had RRP in 2001. Did the roto-rooter thing to clear scar tissue…the bio-feedback thing…the collagen bulking thing and Kegels until I could crush walnuts. Was finally told to live with almost complete incontinence. In 2012 I finally found a Uro who diagnosed ISD. Had the AMS 800 installed in June but had to have the pump replaced in December because it rotated to a position that I couldn’t easily reach.


    For five years I could go 24hrs using just one very thin Depends Shield pad (for “dribbles and drops”). About 6 months ago I began to leak more than a Shield could hold and it kept getting progressively worse. Had to move back to the full size Depends Guards. My Uro did the usual battery of urodynamic tests and cystoscopy and found my leak point pressure to be dangerously high (kidney damage) and said this could cause powering thru the AUS and it needed to be addressed first. Went on Mobetrix for 6 weeks…no change in leakage. Next tried Botox in the bladder…no change in leakage. Now going for new AUS with possibly double cuff enhancement (won’t know until they open me up). Will probably have to stay on meds for the pressure issue after new AUS.


    If you read white papers available to laymen you’ll find there is NO definitive answer to “how long.” The best (generality) commonly stated time seems to be 5 to 10 years with around 30 to 35% failing at the 5 to 6 year mark. Other than ureteral damage from the cuff, failure of the pressure balloon appears to be high on the list. Furthermore, most of the sources I found suggest that if the system is over 3 years old, all three components should be replaced. One paper suggested that just the pressure balloon could be replaced without the other two components, thus negating the need to open the other surgical sites.

     
    One other thing about all the papers I’ve slogged thru: I CAN FIND NO OBJECTIVE DEFINITION OF ENOUGH INCONTINENCE TO JUSTIFY THE AMS800. It is all subjective with a few “experts” suggesting values indicating a sling for “mild” leaking or the AUS for “sever” leaking but no one agrees on how much water that references. One paper said (subjectively) more that 2 teaspoons (10grams) per day defines incontinence that justifies intervention.  Over the last month (per my Leak Diary, my worst day was 689grams (137.8 teaspoons) and the best day was 205grams. I think I’m sever?
    This leaves me to the final part of my rant. I wish all the doctors that reference “pad count” in their white papers would just stop doing that because it’s completely meaningless. If I decided to change a pad at even 10 teaspoons (50g) it would mean 13.78 pads for that worst day. Experience has shown that if I sit down with a Guard pad holding more than 140g it will squish out and soak my pants and every thing under them. But, the pad count is much lower if the individual pad capacity goes up. (Lots of Shields vs. fewer Guards.)


    I always present my Uro with measured leak volumes in addition to pad numbers along with my level of activity before the pad change. Sleeping, sitting or walking results in huge differences in when I change a pad and how much water it contains. The reason I do this is to have a hard record of measured numbers in order to prepare for a challenge that may come from my insurance carrier. They may have their own private numerical definition of the incontinence level required for “medically necessary” coverage.

  • Banff
    Banff Member Posts: 10 Member
    RobLee said:

    AMS replacement interval

    I was told it's around every seven years, but it is NOT the lifespan of the device, rather the condition of your anatomy and the urethra in particular that is the primary factor.  As the device operates over the years it erodes the urethra and becomes less effective as tissue loses its integrity.  At a minimum they need to open you up and move the cuff either forward or back more toward the bladder so that it is operating on "fresh" tissue.  While they're in there they just replace everything as after ten years or so then mechanical failures may become more likely.

    So the long and short of it is, if you live another twenty years, you will have it moved and/or replaced twice in that time period. Your urosurgeon will likely inquire about your devices effectiveness and possibly do a cystoscopy before advising relocation and replacement.  Generally that will be every 7-10 years.  One recent poster here has had an AUS since his youth (don't recall his name) but the hope is that as time progresses newer options will become available.

    Some hope regarding "newer options"

    https://medicalxpress.com/news/2018-04-gotta-app-bluetooth-operated-bionic-sphincter.html

     

  • RobLee
    RobLee Member Posts: 269 Member
    Banff said:
    Thanks Banff

    Thanks for the link.  Oddly enough, last week just before my colonoscopy I was informing the anesthesiologist of my AUS and he asked me if it was controlled by an app. Possibly he may have read of this device already (though it is not yet available).  I can see how useful this would be in the caregiver scenario as cited in the article. Also I would think for women.  But for us guys, we would still need one hand for aiming, so no free hand for the smart phone.

    It's been quite a while since we last corresponded.  I hope everything has been going well for you.

  • Banff
    Banff Member Posts: 10 Member
    RobLee said:

    Thanks Banff

    Thanks for the link.  Oddly enough, last week just before my colonoscopy I was informing the anesthesiologist of my AUS and he asked me if it was controlled by an app. Possibly he may have read of this device already (though it is not yet available).  I can see how useful this would be in the caregiver scenario as cited in the article. Also I would think for women.  But for us guys, we would still need one hand for aiming, so no free hand for the smart phone.

    It's been quite a while since we last corresponded.  I hope everything has been going well for you.

    Bonus points to you for "no

    Bonus points to you for "no free hand for the smart phone" - definitely LOL worthy! I guess we'll just have to sit down! Then we'll realize why the ladies always wanted that toilet seat left down.  :) And thank you, Rob I am doing well. I hope that this update won't be too much info, or just stuff that I've already said. My issue, you may remember was a severe and lengthy stricture of the urethra, believed to be due to having 8 weeks of broadbeam radiation back in 2004 after a radical prostatectomy apparently didn't get all the bad stuff out. Over time, radiated portions of the urethral tissue dried out and collapsed on on themselves, much like blocking off a drinking straw by squeezing it shut. The length of the stricture ruled out what is most often done for strictures: an end to end anastomosis which is not unlike repairing a garden hose; snip out the bad part, pull the two ends back together and suture them in place. Instead they had to do a more complex and riskier series of things: they made an incision the full length of the stricture and a little more, along the top of the urethra. They took cheek tissue that they had scraped off of my cheek inside the mouth (its soft and moisture-accepting enough to be similar to the urethral tissue and thrive in that environment) and used that to patch the incision that was made. They cut a long incision in my left leg, pulled out a section of muscle called the gracilis muscle flap, and used that as a protective wrap around the repaired section of the urethra (in addition to protection, it also provides blood flow to the area, in hopes of preventing or delaying dehydration (which was a big, radiation-induced factor in the stricture happening to begin with).

    So 4 days in hospital, then five weeks at home with a catheter (I don't need to tell you that isn't as much fun as one might hope) and that included a "blockage" incident necessitating a trip to the ER, also never really a fun place, but finally having the cather mercifully out and about 60 metal staples pulled out of the back of my leg from calf to groin. Now 10 months after the surgery I'm no longer dealing with recurring bladder stones and infections due to inability to empty the bladder, blood in the urine, or difficult and sometimes painful urination. The surgeon was worried that giving me a rebuilt and unobstructed urethral passage might have a downside of making my urinary incontinence worse, and said it was possible that my incontinence would be so relentless that I would need an AMS 800. I was scared, and that's around the time I first reached out to you for advice about external catheters. So far, that scenario has not happened, so to date I have been lucky in that area. I still have stress incontinence, especially when I move in certain specific ways, but so far 2 to 3 pads a day has been sufficient. My moods ping-pong between the appropriate one of being grateful that the worse case scenarios I feared did not happen, and alternately the less appropriate mood of being bitter about having to be incontinent at all. Human nature I guess, but when all is said and done I am very much aware that I have a lot to be grateful for.

    I wish you and yours all the best, Rob. I'm so glad for you that you were able to get past very unfortunate complications with your AMS, and in doing so restore so much in the way of living a full life. Your story really touched me and something about the way you told it showed you to be so human, and relatable, and someone to root for and hope for. At one point I wrote on your blog about how helpful you were when I reached out to you, and my appreciation of that, and how sincerely I hoped that things would get better for you, and when I went back later to reread it, it was gone. I assume I screwed up and maybe left the page without first transmitting the message or something - I don't do a lot of online communication, and I've never even texted on a phone, so anything is possible. So you dodged one bullet of my uncomfortable attempts to articulate feelings, but now as it turns out you're still stuck with reading this one. Fewer words, but the feelings never went away, so while I'm on with you I'm glad to have the opportunity again to say how much I have enjoyed and appreciated your presence here. So many of us, including you and your wife, have battled through so much, but we're still here, and still here for each other.

  • ottorabby
    ottorabby Member Posts: 1
    edited April 2019 #76

    Thanks Trew

    Trew:

     

    How long ago did you have the impant?  

     

    My father in law does some biking and is active on a farm too -- tractors, mowers, etc.  So, I imagine he will have a similar experience as you.  I agree, that sure seems way better than the pads.

     

    On a related note, I am a road bicyclist and wondered if you've ever considered riding a recumbent  or one of the fast trikes they make these days.  In both, you'd sit with much less pressure directly downward.  I have a CaTrike brand that I purchased due to lower back issues.  So, I know from sitting in that, there is much less pressure vs a road bike.  Just a thought.

     

    I appreciate you comments above too.  Take care.

    Ams 800
    will I have had 2 AMS 800 Control System both failed . Don't know if I want to try for 3 the surgery 6 week recovery the short time i had the ams it work great. Has any one had the same problem with the AMS 800. Incontinence is no way to live
  • progolf
    progolf Member Posts: 12

    AMS 800

    Im scheduled for an AMS 800 implant next month, does anyone know how long they last before having to be replaced? I had my prostate removied a little over 13 years ago, and after radiation treatments and over time my bladder just doesnt hold like it use too. Which I guess comes with having prostate cancer, however, Ive been off the hormone treatments for about 5 years with my PSA being untraceable. So that part is good.

    surgery implant

    How did the surgery go? How is the AMS 800 working for you? I am considering this because of the severe leakage problem I have.

  • addison10
    addison10 Member Posts: 6 Member
    ams 800

    Great dialog.  Had rp 2013 after pc spread while on "active surveillance".  Then radiation after ultra psa became detectible and rose.  2-4 small pads a day.  Considering ams 800.  Love to run and hike.  Thanks for all the comments and experiences.  This is a special place to discuss a more than difficult condition and share.  

  • Redepen
    Redepen Member Posts: 1
    AMS800

    I had Dr. Ellioit at the Mayo (Rochester) do mine about 9 weeks ago, it went very well! After the surgery they wait 6 weeks before turning it on so everything heals, it is a game changer!!!! 

  • Josephg
    Josephg Member Posts: 318 Member
    Agree with Redepen

    I am in agreement with you, Redepen.  My first AMS800 lasted 6 years, before springing a leak and failing, and it was indeed a game changer from my previous incontinence, following RP surgery.  My replacement AMS800 was activated two weeks ago, and it certainly reinforces just how much of a game changer it really is!  'Normal' life returns, and it is really good!

  • Trew
    Trew Member Posts: 931 Member
    My AUS 800 Now over 8 yrs old!

    It was installed on Aug. 18, 2011   Surgery:  AUS 800.

     

    Leakage is  gradually increasing.  I use 1 or 2 pads a day but not so bad.  If I ride a bike for an hour or more I'll be soaked.  Sitting on the wrong  surface- like too hard, too low, etc- I'll lose a squirt of water.  Annoying.  I have been starting a discussion with my urologist about the criteria for a replacement.  I'm turning 71 this month and I don't want to put this off forever.  

    I just remember, life was unbareable before the AUS.