AMS 800 artificial urinary sphincter

Sorry I can't give you any advice about the device, but I can offer some empathy. My father was 90 when we took him to the hospital with liver failure. The doctors at Methodist hospital told us that they could put him through various procedures and medications, but it wouldn't stop his advancing organ failure. It would make what time he had left very uncomfortable and probably wouldn't gain him any extra time. We were grateful for their honesty... He passed away a few months later at home surrounded by his family and the Medicare provided hospice worker helped us to make him as comfortable as possible. 

I hope you get this situation resolved soon. Is there any way to check on surgeon's reputations in your area? Surgeon's Scorecard is a website that tracks success rate of doctors and hospitals, and it covers a wide variety of operations, but I don't know if surgery to implant that device is covered, but you can check for a more accomplished surgeon in your area by consulting that website. Its web address is posted in the prostate cancer forum just a few days ago. That is assuming you cannot contact your first surgeon.RobLee is right... You never know what might be going on in his situation either, my own doctor was inaccessible for a while, and then I found out later from her busy staff that she had her own emergency operation to contend with. But if he is actually avoiding you I would contact a surgeon in your area with a good record. Hoping for the best for you and your father. I know its tough.

Banff said:

Condom Catheters for incontinence

Hi Rob. I'll be having a urethroplasty with grafts procedure to repair a 6 cm long urethral stricture. My doctor has warned that if successful, this repair will, ironically, make my degree of urinary incontinence much worse. I may eventually have to try the AUS, but if can find a way to manage without it I would prefer not to have an implanted device. Of course, time will tell. For now I am looking into external condom catheters, and was encouraged by your comment that "While shopping online for better pads I was directed to condom caths by an ad. It took a while to figure everything out and find what works best, but by 3 months out had a routine that has worked very well." Could you share the brand of condom cath or system you settled on, that has worked out for you? I'm a bit overwhelmed by all of the different brands and types that I see online, and would be greatly helped to hear from someone who has found a condom cath and accessories that work well. Thank you very much in advance for any advice and shared experience that you can offer!

Thank you Banff for your interest, and I hope everything goes well with your surgery. Before going into the subject of condom caths, I should probably say (not a medical authority) but I would guess that a urethral graft might possibly rule out the AUS at least until your urethra has healed completely. Urethral erosion is the number one problem with the AUS, and is probably my greatest concern about having this procedure. I'm guessing that once the damage is done, it's done, and I don't know if there are any options after that. Nonetheless, I hope your outcome is positive and the graft improves your condition.

About the condom caths (we - you or I) should probably start a top level thread in the PCa forum here so that anyone looking for cath info could find it here, without searching thru the AUS thread. Anyway, the best caths I like are called Freedom with Aloe Vera. They are made by Coloplast and you can get them on Amazon for I think $1.60 each... you can buy boxes of 30 or 100, but I ordered them ten at a time while I figured this stuff out. The best leg bags also from AZ are $2.50-3.00 each ... 1000ml Rusch Easy Tap. They come with elastic straps but I have been using a velcro strap bought separately (still the same one after six months). The bags you can rinse out and occasionally bleach, but a week or two is as far as I trust them.

The problem with the condom caths is it seems each mfr has staked out a size range, and they sell 3mm larger or smaller, so if you are between sizes you may have to live with one that doesn't fit so well if it is better than one that fits well but a brand that you don't like. The Freedoms also come in several varieties without Aloe but I found the Aloe ones generally bahave better all around. Read the reviews on AZ and you will see what people like and dislike about each. The Freedoms come in 25mm (way too small for me) 28mm (a little too small) and 31mm... that's what I wear, thought they wrinkle a bit... 34mm and probably larger are also available.  Other names are Bard "Spirit" and "UltraFlex" in sizs 29mm and 32mm. The only brand I've found at 30mm - which actually fit me best - is Conveen Optima, but they are again a different design from the Freedom Aloe. I find I prefer a thicker condom rather the thin flexible ones.

I've been using these now for seven months. I even sleep with the bag beside me (even though I am dry at night) because it is easier than removing the cath or clamping the hose at night. When I need to pee in the middle of the night I usually disconnect the bag and just let it go from the end of the hose into the toilet. Occasionally I will spend a day using diapers, but the wetness is far more irritating than anything I've experienced as side effects of the condom cath. My femur (thigh bone) is longer than most guys by a few inches... hard to buy jeans that fit. I have extended the length of the cath tubing by cuttin a four inch section from a discarded cath hose so I actually run 22" (each bag comes with a 18" hose). My biggest concern about the leg bag is the possibility of the strap causing a blood clot. A lot of the time I use a large safety pin to pin the bag to the inside of my trouser leg and just leave the strap loose.

Well that's about it. I think this probably would make a good thread topic in case other guys might want to throw in their experiences. Again, good luck with your surgery. My AUS goes in May 15th if all goes well.

Banff said:

Thank you so much, RobLee,

Thank you so much, RobLee, that is extremely helpful information!

And the very best of luck to you sir, with your upcoming AUS implant.

I have the same concern that you express, about the AUS cuff and possible urethral erosion after my upcoming urethroplasty with a double graft (both a Ventral Buccal Mucosa Graft and a Gracilis Muscle Flap, the muscle flap being for the purpose of its capillaries providing a blood supply to urethral tissue made ischemic by radiation). This is one of the main reasons why I first want to see if I can somehow manage the incontinence by other means, rather than going right to the AUS. My physician, Dr. Alex Vanni of Lahey Clinic in Burlington, Massachusetts, says that he believes my incontinence after the surgery will be very difficult to manage without AUS, but I'm going to find out before making such a big decision. 

I found a brief demo video on using the Freedom by Coloplast, and found it odd that the fellow made it a point to say that he doesn't recommend it because the condom is 100% latex and thus the skin can't breathe, and he would suggest using a silicone-based unit, such as the Freedom Clear. But clearly the latex hasn't been a problem for you. Here is the link: https://www.youtube.com/watch?v=zyV38o6iE94

Have you found that it helps, as the video suggests, to apply a "skin barrier" wipe or spray before putting the condom on, to protect the skin and provide some "tackiness" to help it stay on? Or does the aloe in your preferred brand take care of that for you?

Your tips including extending the cath hose from 18 to 22 inches by attaching it to a 4-inch length from a discarded hose and using a large safety pin to pin the bag to the inside of your trouser leg and just leave the strap loose, helping avoid worry about blood clots are exactly the type of real-life practical advice from a user that I was hoping to find. That is very helpful to all.

How did you couple the 4-inch length of tube to the 18 inch tube that comes with the leg bag? Did you have to find a hose with a slightly larger or smaller circumference so that one would fit inside the other? Or did you use something like a small hose clamp? My apologies in advance if this is a dumb question.

You also make a good point about starting a dedicated thread on condom cath experiences. This is all currently new and a bit (more than a bit, who am I kidding?) overwhelming to me, so I'm not sure I'm ready to start a thread right now, but hopefully soon I may feel a bit more comfortable posting here and feeling as if I know what I'm doing.

Thank you again, and I, along with, I'm sure many of the people your posts have helped immeasurably, will keep you in our thoughts for your big day on May 15. All the best to you, RobLee.

Sorry for the confusion. All the cath's I've used are silicone. No allergy to latex, but I know that latex has its own odor and so decided against it. The Freedom caths I use are "Freedom Clear Advantage Aloe Vera" ref 2330140. The stock #'s for bulk packs are 6300 and 6330. I allow myself one or two "dry nights" each week to allow my skin to dry out. On those nights I stuff a washcloth (brown or yellow) over my crotch between my thighs to catch any leaks. I have not had any issues with skin wetness. Actually, on days when I use diapers or pads, the constant wetness causes more irritation than anything I've experienced with the CC's.

I wear the CC's generally for 36-48 hours. I've found 2 days and one night, or two nights and one day works well. If I try to stretch one CC into three days then it ends up with a leak.  And I'm afraid that if I replaced them daily then maybe I might end up peeling skin off, though my doctor says that should not be a concern at my age, maybe if I was much older. The adhesive is quite strong.  I remove the cath in the shower.  The trick is to pull the skin away from the cath gradually, rather than trying to peel it off. I lather up and let the suds work on the adhesive, gently working around until you can slip a finger inside. I have tried two different brands of "prep" pads. One brand of cath "conveen" seems to need them, but the freedoms do not, so I do not use them. The real trick is not so much the caths themselves but what to do after the shower, drying off and trying to control the dribbling before applying the next cath.

Each leg bag comes with a new 18" tubing. The tube has a nipple on one end. The nipple goes into the end of the CC and the free "open" end plugs into the nipple on the bag. To get the extra 4" tube I just cut off the nipple end plus 4" from a used tube. So it's "female" condom cath to male end of 18" tube, female end of 18" tube to male end of 4" tube, female end of 4" tube to male nipple on the bag. As you've found, just doing internet searches and visiting websites and you will stumble upon useful tidbits here and there. Also visit distributors and online suppliers sites.

Your urinary problem and the treatment sounds daunting and quite scary. Mine was just a rountine prostatectomy that got a little wacky. I imagine you must feel very much alone in this. I can only guess all that must be going thru your head as well as your emotions. I hope you have a good support structure... wife, family, or at least close friends. Feel free to ask for whatever you need. And good luck with everything.

Hi Guys:

I'm A J

I wonder if anyone out there is getting bladder spasms. My Devise activated activated 5 weeks ago. I would appreciate your input.

Thanks!

Itzagift said:

Activity Restrictions of AUS

Shiredvd,

 

By now you probably have the AUS installed and will soon know the answers to many of the issues you posed. In as much as my AUS has been working well for several years I can positively state that (baring unforeseen circumstances) you will be very happy to have the device.

 

On this, and other sites, the same questions keep coming up over and over. A natural concern for anyone contemplating this procedure. However, each of us is unique and results can vary. Here’s my evaluation at this point in time:

 

As others have stated. I don’t have complete continence. I give it about 85 to 90 percent. I use the thin Depends Shields and can get a good 24 hours on just one. Even so, I often change it just for odor control. As do others, slight movements while sitting or standing can cause minor leaks. I am extremely active (for my age of 72) and ride my new Colnago CLX3 three or four days a week with 125 to 150 total miles…many hours on the saddle. On my old Trek and my new Colnago I use a Selle SMP TRK saddle that has a very large center split and a down turned nose. My point…the cuff is not a problem with the correct choice in saddles. I’ve stepped down from jogging 6 to 8 miles on the days I don’t ride because of leg problems (lymphedema and knee issues from the RRP) so now it’s just a power walk. That keeps me out for several hours at a time…minor leakage not requiring a pad change.

 

I had a revision because the original pump kept rotating back under the cuff and I could not access both ends to hold and activate it. My Urology Babe replaced the pump and tied it permanently into a horizontal position toward the front. It still pulls back in a little on occasion but has not presented a major problem in activation.

 

My original intent to get a tattoo has gone by the wayside. I’ve now had so many medical procedures, my tolerance for more (elective) discomfort is nonexistent. Chemo, surgery and radiation for non-Hodgkin’s, ablation for AFIB, lithotripter for kidney stones, hernia repair, and more have taken much of the entertainment value out of watching what my army of MD’s can do to keep me glued together. But, while many of these procedures have undoubtedly saved my life, I have told them all that the AUS is the thing that LETS ME LIVE.

 

I’d do it again in a heartbeat, and will do it again when this one wears out.

I'm having the implant on 1/19/2018. This board has helped alleviate many of my concerns, but i still am curious about post-surgery activities, particularly biking. I'm 75 years old. I was an avid mountain biker until a stroke in 2015. Have been riding an ebike since, and it's the only thing that's kept me going. What has your experience been?

No. The AUS blocks most everything from coming out of your urethra. As you know, you can not ejactlate after a prostatectomy but can still have an orgasm (I call it a pelvic orgasm). Sometimes some urine leaks past the natural bladder sphincter and is trapped in the urethra between the bladder and the AUS and becomes a little bit pressurized so that as soon as you release the AUS it squirts out. But I don't see how that would interfere with having sex. Also, I never deactivate my AUS.

Dray2 said:

What happens if...

I had my AMS 800 implanted last Friday. Very little pain so far. My biggest concern is what would happen if i had an accident and couldn't communicate about the devise. I'm getting a bracelet, but that might not be found. Would the pressure eventually override the cuff? Or, would serious injury result? Most comments seem to address the issues around a catheter being inserted with the cuff in place. Is that the only concern?

Some guys get a tattoo over their pubes. I considered that also but my wife, an RN, mentioned that tatts are so commonplace today that emergency personnel might not even notice it. But they do however look for medical alert bracelets and necklaces. I bought several ID bracelets from sporty silicone models to dressy embossed gold, and keep one in the car and more at home near my keys etc.  Get in the habit of wearing one any time you are away from home. My Urologist specifically told me to have it say "Cath Only by Urologist".  Surprisingly, there are many medical professionals who have never heard of an artificial sphincter.

Several scenarios come to mind, one being your own discomfort from not being able to urinate to relieve a bursting bladder. The other is someone trying to cath you while the cuff is in it's normal closed state. This would cause considerable damage to your urethra and possibly also the device. It's not worth the risk. The bracelet is a tremendous inconvenience, but you obviously already recognize the need for one.

Dray2 said:

Bracelet vs tat

Thanks RobLee. I think multiple bracelets and necklaces sounds like the best solution.  I sure appreciate being able to benefit from your experience and wisdom.  I saw earlier on this site some suggest verbiage for the bracelet, and will use that as a model unless you have other thoughts.

Different style bracelets have considerably more or less space for engravings. At a minimum you want it to say "No Cath AUS" or "No Cath AMS800 Implant". 

Some medical professionals may not know what an AUS is (or mistake it for being an "Aussie") but they can look up AMS800 and they all know that IMPLANT means something. In addition I may include "Cath Only By Urologist" and/or the phone number of my doctor, GP or Uro. Also when there is room I also include my full name, my city of residence and my wife's phone number.

Most engravers have a web interface where you can try out various phrasings and see how it will look. It takes some trial and error, but these things typically cost around $30 each and for a couple hundred bucks you can have an assortment of styles and engravings.

I wish there was a better online resource for information on AUS's. Instead we are a but small niche among prostate cancer patients, as well as some with bladder cancer and survivors of various other urinary continence ralated conditions. Mine was not the best experience, but most guys have no trouble with theirs. It sounds like you've had a good experience so far. I don't want to scare anybody, but there are risks associated with the AMS800... but life with a working implant is far better than life without it, for those among us who ended up needing one. Good luck to you going forward!

sandflylarry said:

ams 800

It has been 9 months since my RP.  PSA is .010 and has been since surgery.  I was using 4-8 pads a day for 7 months. Had the AMS 800 installed 2-16-15. The only problem I had was some discomfort at first from the surgery.  The device was activated on 04-01-15.  I was really wondering how this was going to be since it was April fools day but it all worked out for the best.  I am using one depends liner a day that really doesn't get wet. I am now able to do one hand operation, stand at a urinal, get out of the shower without leaking on the floor, playing golf and riding my Harley Softail.  I got my life back.  AMS 800 was the best decision I ever made.

Larry

I ride a Fat Boy and am about to get an AUS devise put in. Will I be right to ride.