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Posted 8/3/2013 2:46 PM (GMT 0)
My Artificial Urinary Sphincter has not be 100% effective as it was after I was implanted on 1/11/11. late last year it has become necessary to wear a pad and now most days would qualify as two pad days. I just had urodymanics and cystoscopy for evaluation for a revision. I apparently had some misconceptions about what is happening with the urethra cuff fit. I assumed that atrophy was linearly progressive as that was what I thought I was observing with my own implant, however my doctor says that you reach a plateau after a while, say six months. However, pretty much nothing has happened on this whole trip that was gone according to the norms, except so far I remain at the "zero" mark. The cysto was just to see if there was any other reason that I might be leaking. My urodynamics was borderline as a basis for revision so that made the decision harder for me. But, I think I will need the revision sooner or later and I am not getting any younger so I am going ahead with it on the 13th.

There is not much info that I could find on this topic so I am going to make this longish for my friends who have the AUS. In my case my reservoir is still good and pump too, so he will make a small incision just over the cuff and fit the next smaller size and connect to the existing tubing. the surgery will be an hour at most but I will go in early for pre-op and start a drip with antibiotics, after the surgery the catheter will remain overnight till the next morning when I will be released. This could be just out patient but my doc wants the antibiotics to be delivered about 24 hours after. I will leave with the AUS deactivated and it will remain that way for two weeks before it is activated. An AUS implantee on another site had it done outpatient at the same hospital, Methodist Houston, but a different doc. However I have no problem with my doctor's ( Dr. Timothy Boone) approach.

Posted 8/4/2013 3:11 AM (GMT 0)
Knoltree:  Overall are you glad you had the implant.  I've read some on the topic and it seems to be a great way to take care of incontinence if it works.

Good luck

David

Posted 8/4/2013 1:31 PM (GMT 0)
yes, it works very well, even now leaking a bit it's still good. I could just let it as is and get along nicely. If you are a candidate for this type of device, I give it a thumbs up.
Posted 8/11/2013 7:30 PM (GMT 0)
 

Tell Dr. Boone hi for me!! Good luck on the revision.

 Mine also leaks but normally when I am sitting or moving.. I do go through two pads a day.. I also drink a lot of water so that can assist in the volume issue.

I had bladder cancer and have a "NeoBladder" that produces a mucus (part of the small intestines). When the mucus (which is heavier than urine) goes to the bottom of the Neo, I can feel the pressure of it against the cuff and it will leak out. It is a bit slimy, so I guess that can slip it through a bit.

Rather than a tighter cuff, I will go with what I have.. I do know that there is a possibility of the cuff wearing into the urethra after some time. I will take a bit of leakage at this point. Dr Boone said 5-15 years is the average time frame. I am hoping for the 15!!

NEO 

 

Posted 8/11/2013 11:27 PM (GMT 0)
neo, my AUS implant is three months newer than yours. Dr. Boone called the test results " + or - " which I took to mean that I was still in an OK range and I understood that my present leakage would still fall into a "successful outcome" result. I had to decide if a revision was worth it for a relatively small incremental gain and he does not promise any gain. But I really liked the idea of no pad, or at least have the option of no pad like I was for about a year. Dr. Boone said that "normally" there is an initial atrophy of the urethra from cuff pressure that plateaus in about 6 months post implant then further atrophy takes place very slowly over the time period you said (10 years+), but it seems that hasn't been the case for me as I think my leakage is still progressing but I have no data to back that up. I though about it and decided it would be worth a lot to me to stop that last little bit of leakage. So, tomorrow we leave for Houston to have the revision done this Tuesday. Oh, and I think Dr. Boone is the best!
I will post again to talk about the revision process.
Posted 8/12/2013 2:21 AM (GMT 0)
Knotreel, Best of luck with the fix. Keep me posted. Will be thinking about you.

Cajun Jeff
Posted 8/12/2013 2:29 AM (GMT 0)
Knotreel, I hope the revision goes well. Please keep us informed of your progress.

Mike
Posted 8/14/2013 8:53 PM (GMT 0)
Glad I caught this thread. Been off HW for a while. I too have more leaking with my AUS over time since aug. 2010 when installed. I was wearing a light ladies panty liner for a while but graduated to a full Depends pad this year. I can use the new Depends light pad for "drips and dribbles" most days but can overload those some days. Sitting and stress also contributes. The most aggregating thing is what I call "position leakage" when I slip outside the pad. Using the full Depends pad makes this unlikely. One full pad easily gets me through a full day, even with golf.
I too have been wondering about revision surgery to get back to where I was the first year.
Knotreel, please do post your results and progress. It's encouraging to hear that only the cuff can be replaced. Had not heard that before.
Still, the AUS has been a God send compared to before.
I just moved from Michigan to Reno, NV and need to find an experienced AUS Uro in this vicinity. Any help would be appreciated.
Posted 8/14/2013 9:47 PM (GMT 0)
( hi Gene) OK back I'm at home from the overnight post-op hospital stay. I would class this as out patient type surgery, but as I said, Dr. Boone wanted the 24 hour post-op intravenous antibiotics. So far the pain started as moderate at first then tapered off last nite and today mostly painless, just sore. I haven't noticed any swelling and the incision is only an inch or so, but it is right where you sit. Unfortunately I can't report the results but after activation in two weeks I will report the results till then I will be full on incontinent. He did only change the cuff to the next smaller size. I was told, one month of restricted lifting and mostly take it easy (again). Sorry I don't have the answer to the big question, did I get back to 100% dry? but soon enough I will know.
Posted 8/15/2013 12:06 AM (GMT 0)
Best of luck with your recovery.

Cajun Jeff
Posted 8/15/2013 9:29 PM (GMT 0)
What Knotreel is not mentioning, is that when Dr Boone puts you up overnight... well it is like a 5 star hotel.. I am talking wood paneled hallways , bottled chilled water.. A rated nursing staff.

Helps when you are the Professor of Urology at Baylor College of Medicine!!

Glad all went well!!

NEO
Posted 8/16/2013 3:26 AM (GMT 0)
Neo, you left out chef, kitchen wait staff, restaurant style menus to and you can order stuff whenever you want. I was going to give your greetings to him, but I was in the john when he came the next day and he talked to my wife instead of me.
For those who have never been to the Texas Medical Center in Houston it is mind boggling, Lots of big name hospitals interconnected along with restaurants hotels, shops parking. I was told it is the biggest medical complex in the world.
Posted 8/22/2013 10:09 PM (GMT 0)
So Kontreel, how you feeling? Is the recovery on track? Any pain/soreness or is that gone? Looking forward to your continued progress and reports. If I eventually decide on revision surgery I might follow your footsteps. I am now in Reno, NV and don't know any Uro here.
Posted 8/22/2013 10:38 PM (GMT 0)
tallone, things are progressing very well, one week+ out. The pain was only moderate in the first hours post op. and very little if any the following days, All soreness cleared a couple of days ago. It looks pretty well healed up and now just waiting till next wed (8/28) for return trip for activation. I have given the new cuff a "trial run" of 15-20 minutes last night and it seems definitely better. Only a couple of tiny drops on the bath's tile floor, whereas before it would have been half a dozen or more larger drops. One thing I have noticed in the last week with it unactivated, as it is supposed to be right now, I have a lot worse leaking than I had before the original implant. So bad in fact that I have been on my external catheter, leg bag and night bag 24/7 ! The only explanation, I guess the massive rehab with kegels in all sorts of positions, electro-stim, ect. did have some positive effect, that conditioning appears to be gone.
If travel to Houston suits, that is a good place to go. Plenty of affordable motel/hotels close by with medical rates and lots of tex mex.
I will post after the official activation and can tell better if the improvement was worth it.

ron

Post Edited (knotreel) : 8/22/2013 4:43:53 PM (GMT-6)

Posted 8/29/2013 12:30 PM (GMT 0)
OK, I had my AUS activated yesterday after a two week wait. The smaller cuff they fitted appears to have reversed the performance degradation of the original cuff. I calling myself "dry" now as the result. Without a pad, I can leak a drop or two now and then with a nickel or sometime quarter sized wet spot in the under ware and it evaporates so it is not a continual drippling. Before the revision, without a pad I had a 6" wet stop that didn't go away. I feel it was worth it to have the revision done, my thoughts were, I am not getting any younger so why wait.
Posted 8/29/2013 2:34 PM (GMT 0)
Good for you! Hope the improvement holds. Has any swelling gone down? Is the pain gone, sounds like you are back to normal?
Posted 8/29/2013 5:04 PM (GMT 0)
well, there was no swelling that I could tell, pain only last a few hours after waking up, so only other than the actual hospital time, there wasn't much interruption to everyday living.
Posted 8/29/2013 10:06 PM (GMT 0)
Well congrats on being dryer..

 I do not leak unless I am sitting on the cuff (my butt) for a while, or getting up off the chair/sofa where you would put pressure on the cuff. As my neo-bladder gets full, I will start to leak out no matter what position I am in. But I leak more than before.

I have been standing in my store ( I own a furniture store in North Houston) and talking to a client feeling urine leaking down my leg so fast, the pad could not contain it.

I would quickly run to the bath room and really not have a lot in the bladder taking in account what I just lost earlier. Who knows?

But I am a two pad a day guy now.. I think before just having the swelling from surgery made me dryer. And as time went on I lost that swelling and this is the norm.

But I do mostly notice, sitting on a cushion still activates the cuff.

Good luck on the smaller cuff. I want to know how it goes down the road.

NEO

Posted 8/29/2013 10:25 PM (GMT 0)
Congrats also. Question. Did your surgeon mention anything about deactivating the AUS nightly? Mine told me to do this and was wondering what other Dr's were saying.
Posted 8/29/2013 11:08 PM (GMT 0)
I would pee all over myself at night.. Just laying on my side & belly causes the pressure to push it out. Maybe 3 hours at the most. I do not hold back drinking water however. I sleep half awake anyway.

NEO
Posted 8/30/2013 11:24 AM (GMT 0)
my surgeon and a colleage at another hospital did a study which the conclusion was it didn't help to turn off at night. however it don't think that ended the controversy as to unactivate nightly. Oh, my surgeon says he thinks you should just let is activated all the time.
Posted 12/7/2013 3:22 AM (GMT 0)
Knotreel,
How about an update/status report.
Posted 12/7/2013 4:15 PM (GMT 0)
Carl, it's been about 4 months since the revision to the smaller cuff. I have had more time to evaluate the results and it is not as good as I had hoped. Now, I must say that that my expectations were high, too high maybe, I shooting for 100%, or as far as 100% can be with an AUS. My original cuff implanted 1/11/11 was for a time what I would call 100% ( no pad or shield) and that had degraded to a pad per day. By this I mean pretty much fully wetting a light pad, not a shield. Now I wear shields and usually it is <1/4 wet at day's end. It has definitely helped but if I knew then what I know now, I think I should have waited longer. Dr. Boone said the urodynamics test was "50-50" so it was up to me. This should have been a clue but I was blinded by the hope to return to my original result. I guess I was imagining the original result at it's very best and I really don't like pads and shields. My advise would be to wait if the urodynamics don't fully support the case for a smaller cuff. They say one should expect to have a revision or replacement in about 10 years and my thought is now that if I can stand it, wait till the thing breaks down and needs replacing. On the other hand, the operation was the easiest I have had, no pain very little swelling a not much soreness, just overnight with a catheter but I think this was mainly because I was from out of town and if I was local it would or could have been outpatient. So, bottom line, I don't know but things are better. For those considering an AUS I give it a thumbs up and long term your shrunken bladder will regain a lot of retention capacity which makes live easier.
Posted 12/8/2013 12:33 AM (GMT 0)
Thanks Ron, very helpful. I had consultation with my new Euro this week. We agreed that I should wait. My quality of life is fine even though I now wear a full Tena male guard/pad and one easily goes all day. I also occasionally use the Attends you recommended. I like them better but usually can't make it all day with one. They don't hold position as well either but are a lot more comfortable.
I think that totally dry by our definition is rare whether you are talking about slings or AUS.
Best wishes to all for the Holidays.
Posted 12/8/2013 7:57 PM (GMT 0)
Yeah, about those Attends shields, they have a tendency to not stay in place for sure, sometimes I find that the thing has completely flipped over an the adhering to Willie rather than my shorts. hate that!
I also use, sometimes, the Depend for men, Guards. Thicker by a lot and too much bulk for everyday clothes without a big frontal bulge. My ,sort of, favorite as far as being unobtrusive is the Depend for men, Shields. These are very light and thin good adhesive but way (way) to small, I have to wear two splayed out in front to cover the area. But the Attends, although moves too much, is quick and usually keeps Willie in its cup shape.
OK, I feel a rant coming on. WHY? do they make "just for men" products which look pretty much like women'? Do they not know that the penis can move around, women's equipment stays in one place, men's do not. The men's urinary protection pads an such, just seem like, at the most, marginally wider than the women's.
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