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

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

I m 59 had a salvage 2 years ago.

I'm suffering from radiation damage. after several surgerys to help - my leakage was almost uncontrollable - I turned to condom and bag. My new and improved urologist operated on my bladder and uretha . He put me in hyperbaric therapy.

He installed the AUS in August I waited 6 weeks to activate - what a great improvement.

Life changing. You become like a real human. It has been incredible.

I am extremely active - I work 40 - 65 hrs a week.

I have not rode a bike or my Quad yet - I am waiting for 6 months to pass.

I Hopefully can ride my Banshee again but if i can't the ability to control when i pee is worth it.

hope this helps

John

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.

Very Helpful

Thanks Glenn

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

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

Barrie,

Somehow I had missed your post until now, I think.I hope that you are able to find a path leading to a better quality of life for you,

Glenn

hi Jason. i am doing a research for my dad who is incontinent after TURP and is considering AUS. He is currently using a lot of pads and is really depressed with the impact it has on his life. Can u share with me if now, 5 years after your operation you still have positive outcome from AUS? Did u hear about someone who had any complications or for whom AUS was not effective? Thank you for your help. An

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

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

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

Husband on surgery now....Dr. Shridharani in Chattanooga. He backed out couple times, put off surgery due to fear, but leakage so bad, decided time to get AUS placed. Hopeful for good outcome. Very experienced doctor.

Gina,

I hope his outcome is as good as mine has been.He will be dealing with some soreness for some months, but expect little real pain.

Glenn

i am scheduled to have this surgery with Dr. Shridarani next month. I was curious to see how everything went with your husband and what were your thoughts about this doctor. Your thoughts and opinion would be greatly appreciated.

hi Gina. can i ask how was your housband surgery? did he have any complications? i was wondering if this surgery is reducing the need for pads completely or they still need to be worn in case of small leaks? I am looking for info from other patients who has it for my dad who is seriously considering one for his incontiannce after TURP. Would be greatful if you could share your husband's experience with me. Thank you An

An, I had the AUS done this year. I was SOAKING 3 pads a day. Sometimes more. I am 76 yrs old. I am now totally free of pads. It has changed my life.