After nearly two years, my Artificial Urinary Sphincter is doing its job!

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As I've posted elsewhere, I had surgery (Greenlight Laser) for BPH in March of 2016, and I was left highly incontinent.  The urologist who did the GL, I believe, concealed the cause of the incontinence, complex strictures in the membranous urethra area.   (Prior to the GL procedure, I never had a UTI or STD;  just slow flow and nocturia.   I am convinced the GL procedure, or perhaps an emergency room visit two days after the GL (when I was in acute retention and had another Foley cath inserted by some young nurses) was the cause of the strictures.

My leakage was extreme.  I tried Depends, and I could easily soak 8 or 10 in a day.  I finally resorted to condom catheters and a bag during the day, and Depends at night, as being on my back allowed me to hold enough so that one or two Depends and trips to the toilet allowed me to get through the night.

After a number of surgeries to try to resolve the strictures for long enough to have an AUS implant, I had a procedure that enabled me to have an AUS implant in mid November of 2017.  The AUS was activated the first week of 2018, and I am very happy with the outcome.  I do use a light pad, as a strong cough can cause a drop or two.  At the end of the day, there is no obvious evidence of leakage, as it's so trivial (compared to the last two years) that I don't notice it.  At night, I don't use a pad.

The one thing I have to be careful about is this:  To empty the bladder, I have to depress a small pump, located in the scrotum,  2 or 3 times.  That removes pressure on the AUS cuff around the urethra, allowing the bladder to empty.   After peeing, I have to wait a minute or so until the pressure on the cuff is restored, and leakage is prevented..  If I don't wait, then some dribbles could dampen my PJs at night.

As I am nearly 79, I recognize that I need to be thankful for what I have, and try to forget the things no longer possible.  I am definitely thankful for the outcome with my AUS implant, as it has made my life so much better than what the previous two years were.

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  • Posted

    glenn77-

    You have experience in this area so I would welcome your thoughts and/or any other avenues for information I should pursue.

    About a year and a half ago I was diagnosed with prostate cancer so I had it removed.  I was incontinent from the start and got down to about 3-5 pads a day after 6 months.  So at the one year mark I had a Male Sling put in and my incontinence improved to 1-3 pads/day.  Not perfect but better.   So now my decision is to live with where I'm at or have an AUS put in.  I'm 52 so hopefully I have a long life ahead of me and I would like my quality of life to be as high as possible. 

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    • Posted

      I think I responded to another post you made this a.m., but here goes again.  What kind of pads are you using, and how heavy are they when you change them?   My leakage was such that a Depends pull up might be sagging with 10-14 oz of urine within 45 minutes of a change, which felt awful for the male anatomy.  I've been very active, biking or hiking  most days, and that was out the window for nearly two years.  I finally started using condom catheters with a leg bag.  Not great, but much more comfortable that soaked Depends.  I did that for a year, up to and for a while after the AUS surgery.  (I have a big supply of 35mm condom catheters I would like to give away!)

      My AUS implant allows me to wear shorts in the summer without pads.  (Some patients are not totally dry.)  The two other men I know who have an AUS both say they would do it again in a heartbeat, and so would I.

      Being mechanical, they sometimes fail, requiring surgical revision.  It's worth that risk IMO.

      My implant placed the cuff around the bulbous urethra, the usual location.  I've read that in Europe, the AUS is approved for women, so the cuff is placed at the bladder neck for them, I believe.  I was in surgery for about two hours, and stayed in the hospital overnight, and was released with a Foley catheter the next morning.

      The Foley stayed in for a week, and its purpose is to keep the perineum area dry, as there is a long suture line running from about 1" in front of the anus to near the scrotum.  There's a small second incision right at the pubic bone; that's where the reservoir is implanted.

      My post surgery pain was very low.  After I left the hospital, I declined to take the narcotic prescription they gave me, and took only Tylenol, and that was quite adequate.  After surgery, the AUS is locked in the open position and stays that way for 4 to 6 weeks.  My doctor requires 6 weeks, believing that good healing takes that long.

      I removed the catheter myself after a week per instructions.  Only showering was allowed--no baths for some time.  I went back for a visual check of the sutures at 2 weeks.  About 6 weeks post op, I went in and the AUS was activated.  It literally took 15 seconds, and my surgeons fellow said, "that's it"

      The sutures are left in until they fall out, so they're a bit of a bother, but by now, mine are completely gone.

      The pump is high in the scrotum, on the right side as I'm right handed.  To empty the bladder, I use the left hand to secure the pump by two little tubes coming out of the top.  I then squeeze the bulb at the bottom about 3-4 times, depending on how full the bladder is. I use a square of toilet paper to blot, and to make sure the AUS has fully closed (it's automatic).  I do need to use a stall, so I can drop my trousers, as the trouser's fly doesn't give enough access for the operation.

      If the sexual function you had as a 16 year old is important, you won't have it, as retro-ejaculation is what happens.

      If you would like to discuss further, PM me your phone number and I'll give you a call.  (PM..Private Message is accessed via the little envelope icon.

      Glenn

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  • Posted

    I'm using Depends Incontinence Guards for Men, Maximum Absorbency and how heavy they are depends on my activity level; a lot of walking or moderate lifting and they're pretty full and I go through 3 a day, if I'm sitting most of the day they are maybe 50% full and I can get by with one pad for the day.

    I was fairly active before; bike riding, hiking, skiing, etc... but I'm pretty limited now and would like to have these activities as an option in the future.  I figure I'm 52 and hopefully have quite a few good years left so if I can improve my quality of life that would be awesome.  Also, it would be nice not to have the worry of travel or meetings and leaking. 

    Your feedback about recovery is comforting as I'm hoping if I go ahead with the surgery the pain/recovery will be manageable and it sounds like it will be.

    From what I've read and your experience it sounds like the AUS 800 can significantly improve things.  I guess my dilemma/decision is that my incontinence is low to moderate depending on my activity level and is the likely improvement worth the pain/hassle and will it increase my quality of life enough.  (I'm leaning towards having the AUS procedure.)

    Thanks for your details on your procedure and recovery.

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  • Edited

    Glenn, thank you so much for taking the time to write your post. It’s comforting for sure. I do have a couple quick questions.  Hoping you might be able to answer. I’m having surgery to get the AUS on June 25th. A bit nervous and hoping it will go well. Here are my questions:

    1- After you are done urinating, how do you know when the cuff is done refilling and you can zip up? If you have completely emptied your bladder you would just stop urinating I would think but you mentioned waiting a minute or so for it to fill back up. How do you know when you are completed?

    2- I read online on the AUS website that you have to wait 3-5 minutes after urinating for the cuff to refill. My doctor said about 45 seconds but I wasn’t sure if he was correct. You mentioned about a minute. I’m happy you said a minute as 3-5 seemed a long time. Would you still say about a minute then approximately?

    3- you mentioned you got there button on the right side because you were right handed. Can the button part in the scrotum be activated one handed? Because for the last couple years having to have pads even though I’m right handed I’ve been naturally using my right hand to pull down the waistband on my shorts and underwear and hold/direct urination with my left hand. Seems natural that way. I was going to have them put button on left thinking I can push it with just my left hand and hold waistband with right. Do I need both hands then for the button?

    4- you mentioned not to expect fantastic sexual performance as it is “retro ejaculation”. What does that mean?  Did the AUS effect your ability to get an erection after normal recovery time? Is sex any different with the AUS?

    Thx for all of your help and detailed explanations previously. Extremely helpful!

    Jason

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    • Edited

      Jason,

      I hope your implant turns out as well as mine has!  

      You will receive an "operator's manual" when you go home.  It recommends using two hands, and I've come to think that's the best approach because when you squeeze the pump, it is very slippery and tends to slide away.  (I was surprised by how slippery it is.)   There are two little tubes exiting the top, so the recommended operation is to secure those two tubes with finger and thumb of one hand to stabilize the pump, and squeeze the bulb with the thumb and finger of the other hand.

      My pump is high on the right side, next to the penis, so I go around the penis with my middle finger and thumb to grasp the tubes at the top of the pump, and then give the bulb a few squeezes with the other hand to open the cuff.  I then can feel the bulb as it refills, and can tell that way when the cuff has re-closed.  That takes about 30-45 seconds after I've voided, and it depends on how many squeezes I gave at the start.  I've rushed it a couple of times in the middle of the night, and ended up with a wet spot on the PJ's.  So I just force myself to stand at the toilet for an exta 30-60 seconds to be sure.  (Being an engineer, I expect that there are manufacturing variations in the refill time.)

      My flow rate is so high now, even though I was dealing with a stricture at the external sphincter, that I can empty 400 cc's in 12-13 seconds.  I had a urethrotomy for the stricture just 6 wks prior to the implant;  I think the fact that the urethra, down to the cuff around the bulbous urethra, is always under pressure (except for a short time after voiding) has prevented the stricture from coming back, as least so far.

      I have to drop my trousers and shorts, so I look for a stall when I'm in public.  I've gotten past worrying, so if I'm ever in a "urinal only" situation, I will ignore anyone around me and let them wonder.

      Retro ejaculation means this:  With the cuff, the urethra is normally closed.  So if you have sex, you will have the sense of ejaculation, but, the fluids (prostate and sperm if you haven't had a vasectomy) will be forced back into the bladder.  It will clear when you later empty the bladder.

      A lot of men end up with "retro" after TURP surgery, or a prostatectomy for cancer, also many don't, if they have a good surgeon who is very careful.  The only way that you could avoid retro with an AUS would be for the AUS cuff  to be implanted at the bladder neck.  I don't think that is done very often as the location would make it a much more invasive surgery than the implant around the bulbous urethra.

      As I was left totally incontinent by the GL surgery, I couldn't even think about sex for the nearly two years leading up to the AUS.  By totally incontinent, I mean that if I was up walking of standing, I could soak the Depends within 45 minutes to the point I had to change again.  Something during the two years, and 5 surgeries leading up to #6, the implant, left me sort of impotent, requiring Cialis to achieve a full erection.  (It's maybe 80)% without.)  I don't think it was the AUS implant, though, that caused the impotence--- it could be the fact that I'll be 80 next year.  I'm otherwise healthy, and can do a 2-3 mile hike with good elevation changes without having to work very hard, so for that, I'm thankful.

      If you have more questions, I'll be happy to give you a call if you'll send me your phone # by the private message icon.

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  • Posted

    Glenn,

    I can’t thank you enough for taking the time to write me back. My apologies for taking so long to get back.  It was because of your detailed letter earlier that I was able to have confidence going into my surgery. So thank you. All seemed to go fine with the surgery on Monday the 25th and have just been resting since then. You’re positivity about your ordeal was very impactful to me. So thank you. I’ll keep you updated.  Thanks! Jason

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    • Posted

      Jason,

      I just wanted to add a couple of comments from my own recovery.  I had a Foley catheter in place for a week following the AUS implant, and assume you are following a similar schedule.  The catheter is left in to give the two incision sites some days to remain dry.   I didn't have a dressing on either site as both were just coated with a heavy coat of surgical glue that hardened to form a protective layer.   You will experience some itching of the incision sites as they heal, but that's normal.

      The second thing I wanted to mention is that prior to surgery, I had used condom catheters and a leg bag for collection.  I went ahead and used that arrangement after the Foley was removed, as it kept the sites dry, and I preferred that to Depends, etc.   I had tried different condom caths, and found that the Conveen Optima to be the best.  You have to figure out which size is best; if you go on-line, they will send you free samples to figure out that.  The Hollister bags have a soft tubing available that is the only workable arrangement I could find. Hollister bags come with nice wide straps. The tubing easily connects to the condom, and you can use scissors to cut the tubing to the right length for you.

      I assume you will be waiting 4 to 6 weeks until the AUS is activated.  My doctor, who does about 150 AUS implants per year requires a 6 week waiting period.  I asked, "why not four?", and he said that he had found that 6 weeks gave the best overall outcome, with fewer issues.  I believe it's mostly related to the time for membrane covering the cuff to fully heal so that there's a diminished chance of it moving when it's pressurized when the AUS is activated.

      Glenn

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    • Posted

      You use many abbreviations and jargon in your postings making it difficult for us down unders to follow. We have a restrictive medical regime here to reduce the burden on our budgets.

      I suffered BHP since 1990. Alphas, 4mg, were prescribed in 2006. Our so-called healthcare professionals had known since 1995 an increased dosage beyond 2 years was required but this was never researched. When benefit was a little reduced in 2013 I was prescribed Duodart + 4mg Prazosin taking my alphas to 8mg a day apparently un-researched. Though I was never told and there was no warning in the drugs “side effects” the drug was suspected of increasing the risk of high grade Prostate Cancer (PCa).  This was the only option put forward for my BPH though others I subsequently learned had been offered TURP procedure (rebore).

      I was MRI diagnosed with 3+4 PCa in October 2015 with Open Radical Prostatectomy 5 November 2015. Though my surgeon was well trained in robotic assisted procedures the equipment was not available in our city.

      My post-op situation was similar to others on this post. Surgical complications and pain were far less than expected but systemic mistreatment by medical staff exacerbated recovery. An initial kidney failure saw many litres of fluid needlessly injected and parked all over my body. An unusual rash that took months to treat covered my entire back. Following catheter removal a severe painful groin fungal infection arose. This could not be treated in the permanently wet severe incontinence environment but urology refused to re-catheterise to enable the infection to be treated.

      Sunday 2 months post-op I encountered a bladder neck blockage with a litre of fluid in the bladder. A hospital emergency triage nurse thought TURP was short for Radical Prostatectomy (RP) and recorded this on treatment document. Emergency staff then refused to call in Urology, as they should have, for RP despite my many times repeated demands. They proceeded to attempt to shove 6 normal catheters past a prostate that wasn’t there eventually forcing past the scabbed sphincter and causing who knows what damage. This led to several months of self-catheterising and an internal scope procedure under anesthetic.

       Though I had been warned of only a few months incontinence this is now approaching 3 years. Post-PCa it’s devastating to learn ALL the safer BPH treatment options available in UK and US. Now all the incontinence options there as well. To only have OUR Urologists mention medication, open RP and nothing is disgusting when you think of it. For them to hide the increased Duodart Prostate Cancer (DPCa) risk is criminal. It seems no thought was ever given to the effect Alpha Blockers’ 9 years untested relaxing of the smooth muscle tone at bladder neck would have post RP. How after loss of prostate the shorter, straighter urethra with its effect on penis head and length would cause serious incontinence and urination difficulties. We are not allowed any preparedness for so much of this.

      A few post DOUDART PCas have been advised by the drug’s supplier to our Health Department’s ineffective Database of Adverse Events, all are without Gleasons. The bulk of post-DUODART cancers likely remain unknown. Pre-release trials for Duodart’s Dutasteride component were always going to have doubtful cancer findings as all participants were suspect PCa sufferers pre-trial. The supplier uses this weakness in their own sponsored trial to deflect the increased serious PCa outcome found. There is no real post release attempt to learn what effect these drugs, the surgery or loss of the prostate and the bits lost with it will have on hormone or immune processors heralding in other debilating complaints. Durasteride alters conversion of testosterone to dihydrotestosterone (DHT) to hopefully and unnaturally manipulate prostate cell structure. There is, it seems, no real feedback to learn if other glandular processors are altered leading to immune system manipulation and other serious conditions. Cancer is the unnatural manipulation of cell structure and needs no help in this regard. There needs to be some post-treatment evaluation of BPH medications to save us from needless loss of quality of life and manhood.

      I have learnt much since my RP’s aftermath and my now Polymyalgia Rheumatic (PMR). Things I should have known before taking Duodart. There is so much more no one knows. Like what is the full function of the prostate gland and other glands or hormones that could be affected? Where PMR stems from?? They will one day know these causes and functions and what these drugs do to our fragile immune system but taking a punt with us now is not what I should have let them do.

      After I forwarded a copy of a similar Patient Forum post of mine to our Health Department’sTherapeutic Goods Administration they began advertising all over this forum. They boast an “encouraged to report” scheme with no proper system or likelihood of worthwhile data or its evaluation and proper correction.

      Our Health Department favoured ultrasound guided biopsies for PCa detection even though Urologists had known ultrasound had been ineffective for PCa detection since 1990. Had I not insisted on MRI use that was not supported by my Urologist or Government I would still be treated for BPH in some outdated manner.

      I have discovered that compression sportswear (SKINS) substantially reduce my “in action” leaking and am down to 2 pads a day most with some capacity remaining. I have no way of evaluating the pros & cons of sleeves, slings  or AUD surgery as no one here seems to want us to know of these or their benefits in case they blow out their Health Budget.

      Barrie Heslop

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  • Posted

    Hi, I'm wanting to get an AUS surgery after prostate surgery which left me with moderate urinary incontinence (3-5 large pads a day depending on activity level, don't have to get up at night).

    How did you chose your surgeon? I have been trying to use the internet to locate the best in Florida or even the nation but can't seem to find such a listing.

    Thanks for you input.

    Bob

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    • Posted

      bobo3031-

      I checked with the medical device sales rep in my area for the AUS I had installed, the AMS-800, for recommendations on surgeons.

      As an FYI... I've had my AUS for 1.5 years and it's fantastic; life changing and I would do it again in a second.

      Scott

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    • Posted

      Hi Bob,

      I live in central NC (Greensboro) and was fortunate to find a Dr. at Wake Forest Baptist hospital who is highly experienced in doing these implants. It's a University teaching hospital, and Dr. Ryan Terlecki is the specialist who did my implant. He also trains other urologists to do these implants when they come for a year of fellowship work. Before contacting him, I was able to find another man in Greensboro who had the implant from Dr Terlecki, and he was highly satisfied by the result. The most important question to ask a doctor is how many implants they have done, and how many they do in a typical month. Someone who does at least one or two per week should be your goal.

      Glenn

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    • Posted

      Scott,

      So glad that your AUS is working out. For me, I had nearly become a recluse, was depressed, not sleeping, we couldn't travel to visit our family, and so forth. While it's not like been young with full sexual function, it's like regaining 90% of my quality of life, and I'm grateful every day that I was able to have the AUS surgery.

      Glenn

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  • Posted

    Thank you for the idea on who to contact. Glad you had good results. I'm looking forward to finally getting it under control and back to normal life.

    Bob

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  • Posted

    Hello my name is Tom and I had the AMS 800 implant installed on December 12 and activated on January 22 so far I have zero leakage which is awesome however I have trouble getting comfortable sitting and i feel like I have to urinate alot will this get better with time, Thank you

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    • Posted

      Tom-

      I can't speak for everyone's experience but as my Dr. told me capacity and the urge to urinate is a function of bladder capacity and for me it got better over time. (With pads I was accustomed to going to the bathroom a lot to avoid leaks but with the AUS I had to change this habit.)

      Getting comfortable sitting only happened to me initially as the incisions from the surgery healed. This went away pretty quickly, and now it's only odd shaped seats and hard edges that could give me problems; more from a leaking standpoint than discomfort.

      Hope this helps and glad the AUS is working.

      Scott

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    • Posted

      Hi Tom,

      Congratulations! Glad you had a successful implant. Selecting the correct cuff size, and charging the reservoir at the right fluid pressure requires good technique and judgment by the surgeon.

      It's totally normal that sitting is uncomfortable at this point. My urologist was conservative, and consequently it was about 6.5 weeks from implant surgery to activation. (After two years of leaking like a sieve, it was if I had a good portion of my life returned to me. )

      You have sutures in a very sensitive area, and you will be aware of them for a good number of months until full healing occurs. I used a triple antibiotic cream on the suture line that supposedly reduces scaring for a few weeks.

      Be aware that a couple things can cause transient leakage. The first is a really hard cough when the bladder is fairly full. The second is if you sit on something that depresses the area where the cuff is. That will force liquid from the cuff up into the reservoir, opening flow for a few seconds. We have padded bar stools with square corners to the front. I would forget, turn and slide of over the corner, causing a wet spot in my skivies. It was surprising and upsetting, but once I figured out what happened, I learned to how to avoid pressure on the cuff as I got off the stool.

      Also, if I feel a cough coming on, I try to do a Kegel contraction and that helps me avoid leaking.

      Oh, one more thing. I found that if I got up during the night to go to the bathroom, and first put one leg down from our bed, which is pretty high from the floor, the edge of the mattress would depress the cuff and cause my PJs' to have a big wet spot. I avoid that my rotating my body so both legs go to the floor together. (Not fun having to dig for dry PJs in the middle of the night.)

      These issues are so trivial compared to the life I lived for two years, going through 8-10 Depend pullups a day.

      Glenn

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