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A Decision to Make: Sling or AUS?

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Posted 5/2/2014 10:42 PM (GMT 0)
Those of us men who’ve had our prostates removed because of cancer know that urinary incontinence is going to be a constant companion for a while. If we’re lucky, the surgeon doesn’t have to cut into the bladder sphincter, which is one of the urinary sphincters that helps us control our urine flow. The prostate sphincter, however, gets taken out along with the prostate. That leaves us with the bladder sphincter and our pelvic floor muscles to control our urine flow. Our doctors tell us to do Kegel exercises to strengthen those pelvic floor muscles, which take over from the missing prostate sphincter to help us control our urinary output.

For a minority of men, this does not happen in a year or even longer. For reasons I don’t understand, a significant number of us can’t strengthen the pelvic floor enough through Kegels to totally control the flow of urine from our bladders. So we continue to wear pads to soak up the constant leaking and dripping. We may improve control in the weeks and months after our surgery but the leaking never gets better beyond a certain point. We either suffer incontinence for the rest of our lives or seek another medical intervention.

That’s where I am now. For more than a year after the Da Vinci surgery, I continued to drip despite doing Kegel on a daily basis. I did see some improvement over that span of time but I can’t quantify it because I didn’t write down how many pads I was using. I think it may have been 6-7 pads right after the surgery and eventually I got down to 4-5 pads daily.

My urologist finally referred me to pelvic floor rehabilitation. I went to sessions with a physical therapist on a bi-weekly basis and, between sessions, I did the exercises she showed me. This continued for 10 months and, by the time it was over, the therapist evaluated my pelvic floor strength at 4.5 out of 5 (the highest possible score). There was some improvement in my urinary control but I still dripped (average of 3 pads per day). So clearly, a weak pelvic floor was not the reason I was still leaking.

Finally, I contacted my urologist and scheduled a cystoscopic examination of my bladder. His evaluation: my bladder and sphincter were functioning normally. So, it seems that the cause of my leaking lies somewhere my normal bladder (and sphincter) and my strong pelvic floor. My urologist didn’t offer any opinions on what the problem was but he offered me two solutions: implant a sling or implant an artificial urinary sphincter (AUS). He explained the implantation procedures for both and the pros/cons of each approach. At 3 pads per day (moderately incontinent), I’m right on the edge of being a viable candidate for the sling. And he told me the AUS was the “gold standard” for urinary control.

So, now I have to decide which way to go and then let him know so he can schedule the procedure. Big Mac (Bill in Miami) suggested I put the question here on the forum so that both sling guys and AUS guys can weigh in with their thoughts. I’m also scouring the Internet for any articles on either the sling or the AUS (or both). So, I would appreciate it if any of you with experience with either device would share your thoughts with me (and with anyone else who may be in the dilemma as I am). Thank you all!

Mike
Posted 5/4/2014 2:46 AM (GMT 0)
Sling guy here. After 20 months, still leaked with any significant physical activity. You can check my earlier posts as well as those from PC brother Arch. With sling my daily life is back to normal. I like it and recommend it. I don't think my incontinence was quite as bad as yours. Good luck with your decision.
Posted 5/4/2014 8:21 PM (GMT 0)
George, thank you for your feedback. I applaud your success with the sling! It would be my first choice if I could get my leaking down to about half the level it now. I understand the recovery time for the sling (the ADvance sling) is longer than the AUS because you have to allow the tissue to grow around the ends of the sling to hold it in place. But I would have gladly put up with that if it allowed me to pee normally again.

But, even with pelvic floor rehab, I couldn't get significant improvement below my current level of dripping. That's what made realize that exercises alone weren't going to get me back close to normal again. I needed surgical intervention to do that. Actually, I have gotten close to a normal life again by using a Cunningham clamp but it's not a permanent solution. It can hurt sometimes and it's always a bother; so I need to get a device inside me. Still, I've gotten by with just one pad per day and about 100ml of leakage daily. That's a hell of lot better than the 3 pads I was using before!

Anyway, what I'm learning is that my leaking is way too high for a sling to get me dry; so, that may not be the way for me to go. I appreciate your input nonetheless!

Mike
Posted 5/4/2014 9:22 PM (GMT 0)
Mike,
You already know my vote. I should add that I, too, went to rehab for a few months. I, too, was told my pelvic floor muscles were strong and I was doing the kegels perfectly. It was the cystocopy that showed my sphincter was about half the length of a standard issue unit. (Mine was about 10 mm - half was taken.)

Here's a bit of useless engineering info for you. I was leaking at 200 ml per day. 7 oz. How large a hole do you think it takes to leak that much? I won't make you figure it out: 90 um, (3-4 thousandths of an inch). A hole about the size of a human hair was making my life (and yours) miserable.

No wonder the Uro with the cystoscope said it was working correctly. There is no way they can see something that small!
One of the crazier reasons I went with the sling was my firm belief in future medical science. I am half hoping that some kind of stem cell work will enable damaged tissues to heal themselves or maybe my sphincter will somehow shift a few microns and it will seal itself by the time my sling wears out. 10 years? 15 years? Come on! It is only the size of a hair!
In the future they might come up with an additive like Bars Leak that would stimulate the tissues and cause them to regrow. Of course, this would be a prescription only item. ;-)

Jeez! The hole is only 90 microns! Nothing! Surely, there is a polymer, or a nanotube scaffolding that can be consumed or injected into the bladder that would bind in the hole and allow natural tissue to grow around it.

Don't expect a solution like this soon. Too many companies benefit from our misery. Kimberly Clarke, AMS, Coloplast, Urologists.
I wouldn't be surprised if they are sending someone to my door right now to silenc---------
Posted 5/4/2014 11:59 PM (GMT 0)
Hey Mike,

I think this is a good question for your urologist, and it sounds like he's hedging a little. You might want to get a second opinion before choosing a course of treatment. If he's telling you you're "right at the edge of being a viable candidate for the sling," and that the AUS is the "gold standard," that might be as good a hint as you're going to get.

I got the sling and they don't always work fabulously, although they do for many men. Given my experience, I think I'd take the hint and consider the AUS if I were in your socks. But I also think I'd get another opinion first. Also, these procedures are a lot like prostatectomies in that you want somebody REALLY good. I'd pull out all the stops to get the best, most experienced surgeon you can find.

Good luck, and let us know what you decide and how you make out.

Jonathan
Posted 5/5/2014 1:15 AM (GMT 0)
Alright Mike, you are going to get a lot of help from the brothers out there to help with your decision. I am not going to push you either way because I am in the waiting period of activation for my AUS and I don't have any first hand information to compare yet.

I agree with Jazzman to search out a specialist for a second opinion.
Ask the doctor the success rate of each procedure.

The urologist I used specializes in Bladder Health both for men and women. He had installed over 400 AUS's, I didn't ask him how many slings. We all know that more women have issues with bladder problems than men.

I'll jump back on to your thread after I get my AUS activated. Then I may have a true testimonial for you.

Good luck with your thread. Asking guys here for their opinions usually gets responses. I will check in regularly just to see what Worried Guy Jeff has to say. Hopefully he will chime in and tell you his story about peeing in the dark in a public bathroom with his sling.

Bill from Florida cool
Posted 5/5/2014 4:04 AM (GMT 0)
Yep, Jeff, I do know your vote. And I'd second your vote (get a sling) if I had your level of incontinence, pre-sling. That is, I'd do it without hesitation.

Your engineering info isn't useless but illuminating. Since I've had to deal with plumbing leaks in my house, I can relate to it in that way. A 90-micron hole in a supply line can really bad and, even in a waste-water line, you can get quite a puddle of water. So, if I picture my urinary system as a water line, I'm trying to understand where that 90-micron hole would be. I can't picture a hole in my urethra but maybe the faucet (my sphincter) can close only to within 90 microns of being completely shut. That would let out a lot of water. I don't know enough about anatomy to understand why a sphincter can't close completely post-surgery when it could before the surgery.

Anyway, with the progress being made in growing tissue from one's own stem cells, maybe the medical scientists will come up with a way to grow a new, water-tight sphincter muscle to replace our damaged ones. May not come in time to help you or me but maybe the next generation will benefit. wink

Mike
Posted 5/5/2014 4:15 AM (GMT 0)

When you said...
Anyway, with the progress being made in growing tissue from one's own stem cells, maybe the medical scientists will come up with a way to grow a new, water-tight sphincter muscle to replace our damaged ones.

It struck me that if you are going to dream, dream bigger.

I want science to grow me a new cancer-proof prostate and a set of seminal vesicles -- really big ones.
Posted 5/5/2014 4:29 AM (GMT 0)
Jazzman, my urologist wasn't hedging but merely said that, since I'm moderately incontinent (3 pads per day), I was within the range for that to be a possibility. He also pointed out that slings were successful for about 60-70% of the men getting them. So, he was just making sure I was aware of all my options before took the next step. I looked up the information and found that my leakage (a little above 400ml per day) is at the upper range of moderately incontinent. In my mind, that really stretches the odds on having a successful outcome with a sling. Worried Guy (Jeff) said that AMS is more comfortable with a upper limit of 250ml per day for its ADvance sling; so that's kind of getting way below my current situation (and stretching those odds even more).

So, despite my hesitation to have mechanical equipment installed in me, I'm leaning towards the AUS, which I think should give me a better result. I'm very confident in my urologist implanting the AUS (would be the AMS 800) in me. He did the Da Vinci surgery to remove my prostate; so he's already familiar with my groin area. smilewinkgrin Actually, he came highly recommended to me and I've been satisfied with him so far. I can't recall how many AUS devices he had implanted but it was enough for me to know he wasn't using me for training purposes.

Mike
Posted 5/5/2014 4:30 AM (GMT 0)
Bill, I'm looking forward to reading your status report after you get activated!

Mike
Posted 5/6/2014 6:29 PM (GMT 0)
Still in activation count down but bumping thread to the top for more input for Mike.

Any of you sling or AUS guys want to help Mike make a decision?
Posted 5/6/2014 8:50 PM (GMT 0)
Beothail, I've been following Worried Guy and Big Mac for a while now without comment, but your experience exactly parallels mine. Having read Walsh's book about 94% continence at 12 months I was determined to make Kegels work, which I have performed faithfully for 57 weeks and 5 days, 7 months of it monitored in PT. I'm not that old, reasonably fit and I couldn't imagine being in the 6% minority. I was dead set against another surgery. I began researching the pros and cons of a sling because an AUS just seemed too bionic and got mentally prepared to cave on a sling. Then Worried Guy, I think, mentioned a small kitchen scale ($6 bought on Amazon) to measure pad weights - much more accurate than counting pads and found I was leaking at least 200ml and often over 400ml/day, which as you say, puts us on the high end of "moderate," the maximum range for a sling.

My new urologist has left the decision entirely up to me but pointed out that the AUS is 90% satisfactory vs. the sling at 75-80%. I have decided to go with the highest probability outcome and will have the AMS800 installed in 2 weeks. Enough of pad changing every 90 minutes when active. And less likelihood of a "revision" surgery. I'll post after the surgery.

Age 66
BX: 2/13 at age 65; positive 2/6 cores on R side; Gleason 7 (3+4); PINs on L side
RALP: 3/13 partial nerve sparing both sides
Pathology: 68g, clear margins, Gleason 7 (3+4), 2% of tissue
Post-op: Total ED and severe SI; PSA undetectable through 4/14; PT 7 months
Cystoscopy: 4/14, no scarring but bottom of bladder sphincter not fully closing
Posted 5/6/2014 9:34 PM (GMT 0)
Thank you, Bill, I deeply appreciate your help!

Mike
Posted 5/6/2014 10:03 PM (GMT 0)
Canuck, it does sound like we are in very similar situations. Even your path stats are very close to mine. And Worried Guy also inspired me a year-and-a-half ago to get a kitchen scale to start weighing my pads, logging my leakage and charting my daily progress (or lack of). I didn't go as far as he did (measuring the pressure of my stream) but I'm not blessed with a engineering mind like he has. turn

My urologist also left the decision up to me as whether to get a sling or an AUS. He just tried to give me all the facts about each so that I could make a sound decision. He also encouraged me to get more information in other places and from men who've had either device implanted in them. If I choose the AUS, he told me it would be the AMS 800. So we both seem to be following the same path, except you're a bit further along than I am. I'm still collecting information.

We may be dissimilar only in that your urologist could see your bladder sphincter wasn't closing completely. My uro told me that my sphincter was working normally. But, as Worried Guy noted, a 90-micron opening is pretty hard to see.

I don't really have any recent leakage data because wearing a Cunningham clamp really distorts the data. I stopped wearing the clamp today for the next few days to see if I'm still leaking like I did 6 months ago. So far, it feels the same as it used to; so I think I'm going to get the same results as I did last fall. Just checking everything before I make my decision and schedule the procedure with my uro.

Good luck on your AUS surgery! I hope everything goes smoothly, the pain is both manageable and short-term; and that you're happy with the results. And I hope you'll post your progress here as Big Mac (Bill in Miami) has done. That really helps us guys who are coming along behind you!

Mike
Posted 5/6/2014 10:15 PM (GMT 0)
Canuck66,

Good for you! Just like when we were DX with PCa, once you make a decision on your treatment plan it releases a lot of anxiety.

I see you are a large prostate guy also.

As I said on my thread, I went in to talk to the doctor about a sling and came out of the appointment with a surgery date for an AUS. I wasn't really sure what I was doing but I liked the increased odds that the AUS was going to do the job once and for all. I embraced the decision, my wife was on board with it and now only time will tell if it was the right decision. Good luck with your AUS! Sounds like a great Father's Day present to yourself.

Mike,
You're welcome friend yeah

Bill from Florida cool
Posted 5/6/2014 11:51 PM (GMT 0)

Beothail said...
Jazzman, my urologist wasn't hedging but merely said that, since I'm moderately incontinent (3 pads per day), I was within the range for that to be a possibility. He also pointed out that slings were successful for about 60-70% of the men getting them. So, he was just making sure I was aware of all my options before took the next step. I looked up the information and found that my leakage (a little above 400ml per day) is at the upper range of moderately incontinent. In my mind, that really stretches the odds on having a successful outcome with a sling.

Mike,

I didn't mean to imply that your doc was being noncommittal out of ignorance or incompetence or anything like that. I just think that, despite cytoscopy and urodynamics tests, nobody can say for sure which patient will react most favorably to a sling. That's especially true with a patient who appears to be a marginally viable candidate for a sling. In my view, what he told you was the responsible thing to say.

It sounds to me like you've got a pretty good doc, and it sounds like you've got a pretty good bead on what you want to do. Good luck with your course of treatment. I absolutely think that pursuing a solution is the thing to do. Incontinence is maddening and life is too short to put up with it.

Good luck with your treatment, and please let us know how you're doing.

Best,

Jonathan
Posted 5/7/2014 3:59 AM (GMT 0)
Jonathan, not to worry. I realize that my reply sounded a touch defensive (I wrote late in the evening when I wasn't at my best) and I apologize for that. I try to avoid being defensive because it can shut out a lot of good input from people who just want to help you. In any case, my urologist gave me the odds on success with each option and then let me decide.

Initially, I leaned towards the sling to avoid getting all that extra plumbing installed inside me. After all the great feedback I've gotten here, I realize that my chances for a successful outcome are much better with the AUS than the sling (because the amount of leaking I still do). Now, I'm leaning towards the AUS. I like the fact that the guys who've gotten the AUS are very satisfied with it. That's good enough for me.

I can't imagine getting any new info that will swing me back the other way. So, I'm going to make my decision in the next few days and get in touch with my uro to get on his schedule. You're absolutely right - incontinence is just too frustrating to live with and I need to get on with fixing it.

I deeply appreciate your good wishes for successful treatment. I intend to do as Big Mac has done and post about my progress post-surgery. This forum has been a godsend because the folks who've been through the battle are so willing to help the guys who are still making their way through it. I'd like to be among those who pay it forward.

Mike
Posted 5/7/2014 12:26 PM (GMT 0)
I am leaning towards a sling currently, with an implant at the same time. Since the control for the implant will already be in my scrotum it seems like the AUS control might be one thing too many there. I am easily confused and the inevitable result would be to annoy my wife and to send altogether the wrong signals in mens rooms.
Posted 5/7/2014 12:58 PM (GMT 0)
peter, I guess you are saying you might get an IPP?, if so, I can tell you that the AUS pump being in your scrotum along with the IPP is not an issue. The IPP pump is so big and oddly shaped the AUS pump will not even be noticed. The IPP pump has more tubing associated with it and that tubing seems a little bigger. The AUS pump is shaped like a pack of chewing gum but make 1/2 the size. However that said, the total effect is a good bit of tubing. You will always be aware of the IPP pump and thing like getting in an out of a car can sometimes cause some interference with your boys. I would rather not have any pumps in my scrotum but the AUS pump is not and issue weather you have the IPP or not.
Posted 5/7/2014 2:03 PM (GMT 0)
My AUS is not activated yet but the swelling is going down and it is beginning to really show it's appearance in the scrotum. When I meet with the doctor to activate it, I will verify it's location.

I understand that the controller usually stays in the same position and doesn't move around.

Knotreel, do you find that true? Does it stay in your scrotum in the same position without you having to locate it every time you pee?

Bill from Florida cool
Posted 5/7/2014 2:08 PM (GMT 0)
Knotreel,

Yes, I am talking with my urologist about an IPP to be installed at the same time as (probably) a sling. My suggestion that I might confuse the two pumps was mostly to set up the joke about my wife and mens rooms.

My actual reasoning for preferring a sling is that when they work they are a better, more natural solution than an AUS. Because they only compress the urethra from one side they allow for better blood flow and are less likely to cause erosion. On the other hand they don't always work. Roughly eight out of ten guys will be happy with their sling vs nine out of ten with an AUS. And, of course, one must be a candidate for a sling while almost everyone who is incontinent is a candidate for an AUS.

I'm a little bit borderline with regard to leakage. On days when I do my sit-down job I do between 50 and 170 ml. On weekend days spent on yard work (lots of bending and stooping) I leak 200 to 275 ml, and on days spent climbing ladders with my hard-to-start chainsaw I can hit the 400 to 500 mark but that is quits unusual. But I am dry at night and my urologist likes the look of my sphincter in his cystoscope so it's looking like a sling, just now.

One other thing and I don't know how it factors in but I am a big guy. I have a big bladder with a big sphincter and a big urethra. If you scale me and my leakage down to the size of, say Jeff the WorriedGuy (who is a sensible size guy) then my leaking would be well within the guidelines. So if they make bigger slings for bigger guys then maybe I ought to be OK...

Thanks for posting. It is reassuring to hear from guys who have done the double-feature surgery (incontinence fix and IPP) and are reasonably happy with the result.

Post Edited (PeterDisAbelard.) : 5/7/2014 8:11:16 AM (GMT-6)

Posted 5/7/2014 10:09 PM (GMT 0)

PeterDisAbelard said...
My actual reasoning for preferring a sling is that when they work they are a better, more natural solution than an AUS. Because they only compress the urethra from one side they allow for better blood flow and are less likely to cause erosion. On the other hand they don't always work.

It's the erosion thing that kind of bothers me regarding the AUS. I can't recall the % of devices implanted that eventually run into this problem but I think it's low. But, still, it seems that there is some risk of it happening. Of course there is always some risk when any foreign material is placed in our bodies. It's worth the risk to stop the leaking, at least to me anyway.

Regarding the blood flow, I wonder how the doctor fits the AUS cuff just tight enough to stop the urine flow but not too tight to interfere with blood circulation. I can sort of do that with my penis clamp but sometimes the dang thing really starts to pinch me and I have to adjust it. It's a bit harder to do that when the AUS is inside you. Just asking - it's not a big concern for me.

And how the sling works is a bit mysterious to me. My understanding is that it puts the urethra in a better position so the sphincter works more effectively - the way it did when we had prostates. So, unless the bladder or sphincter is damaged, it should work for every man regardless of the amount of leakage. But it doesn't - still a mystery to me.

Yesterday, I went without wearing a clamp to see if the magic urinary fairy had waved her wand and improved my urinary system over the past 6 months. She had not - I had 600ml of leakage, probably worsened by my high level of activity (2 miles of walking, etc). I noticed that even leaning against the kitchen sink put pressure on my bladder and caused squirts into the pad I was wearing. I'd said I'm definitely out of the running for a sling - too chancy.

Mike
Posted 5/7/2014 10:32 PM (GMT 0)

Mike, you said...
And how the sling works is a bit mysterious to me. My understanding is that it puts the urethra in a better position so the sphincter works more effectively - the way it did when we had prostates. So, unless the bladder or sphincter is damaged, it should work for every man regardless of the amount of leakage. But it doesn't - still a mystery to me.

So, why do you think we leak if our surgeons didn't damage our sphincters? Admittedly, before surgery we had two sphincters and now we need to learn to get by with one but most guys can do that. Maybe "damage" is the wrong word but there's something about the way we were cut apart and stitched back together that doesn't appear to work.

If you have a really, really strong stomach you can watch the sling and AUS installation operations on YouTube. There's one video in particular, I can find it if you like, where the surgeon stops in the middle of the operation to pressure-test his sling (measuring the Retrograde Leak Point Pressure -- RLPP). You can watch him tightening it down until the saline just stops dripping when held 60 cm above the sphincter. I imagine there is some sort of pressure test that can be done with an AUS cuff, too.
Posted 5/7/2014 11:37 PM (GMT 0)
Bill, Yes both my pumps stay each in their own same place, although I can move them easily. The IPP pump was fitted so it could go to the lower scrotum as was the AUS. Due to the IPP pump's size, it doesn't move as far as the AUS pump can. There is some type of sac that develops around the pumps that returns them to their home spot. Some guys can get too much of a sac around the pumps and this can sometimes be a problem "they" say. And before the sac develops there can be problems with the the pumps movement. One of my pumps ,don't remember which, got tangled up with a testicle cord and that was painful but I was able to untangle it (Whatever happened this was my interpretation). This was before activation. By now your pump should have it's own spot contained by a sac.
Peter, the idea of confusion it not a new one. While I was asking my surgeon what it will be like to have two pumps and which side they would be on, he hit me with his IPP-AUS joke. He said that he would tattoo me during surgery labeling each side, one with "come" and the other "go". It was a joke, but it didn't take me too long post op to take a peak. No Tattoo.
Posted 5/8/2014 1:24 AM (GMT 0)

PeterDisAbelard said...
So, why do you think we leak if our surgeons didn't damage our sphincters?

Well, honestly I don't know for sure. But I have thought that maybe 10 years of BPH before my prostate was removed had damaged my bladder sphincter somehow. And perhaps I didn't know it because my prostate sphincter was picking up the slack. And once the prostate sphincter was gone, the problem was revealed: my bladder sphincter couldn't handle it alone. My surgeon told me afterwards that I was lucky that my cancer was mostly in the apex of my prostate and therefore he didn't have to cut into my bladder sphincter like he does for so many of his patients. So, if my bladder sphincter was damaged when the surgeon took my prostate out, it was apparently very minimal damage.

My guess is that my bladder sphincter just isn't strong enough to hold the buildup of urine in my bladder. For example, yesterday (when I wasn't wearing my penis clamp) I noticed that any pressure on the lower part of my abdomen produced a spurt of urine in my pad. Any movement with my lower abdomen muscles seems to generate a spurt of urine. It seems as though my bladder sphincter is weak and is never going to be strong enough, even with a strong pelvic floor, to control my urine flow. I'm not a doctor but that's the way my system feels to me. I can't speak to any man's situation.

Mike
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