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AUS Revision, Anyone?

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Gene214
Regular Member
Joined : Mar 2007
Posts : 422
Posted 6/6/2012 8:36 AM (GMT -8)
Has anyone, who has an artificial urinary sphincter (AMS 800), had a revision?  I MAY need need one and I'm looking for input from someone who has had a revision.  Mine is now 4 years old.  My Inflatable Penile Prostheses is still working great, but the sphincter is beginning to give me some concern.

Gene214

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tvwohio
Regular Member
Joined : Sep 2010
Posts : 176
Posted 6/11/2012 3:52 PM (GMT -8)
When I had mine put in last year - they said normally about 10 years +.

After 4 years that is a surprise.

Have you gone back to Uro and asked him to relook at it.
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Gene214
Regular Member
Joined : Mar 2007
Posts : 422
Posted 6/11/2012 5:00 PM (GMT -8)
Well, it's not a serious issue, but...  I seem to be involuntarily releasing a little more often when I sit wrong (allowing a little pressure underneath where the device is implanted).

 

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knotreel
Veteran Member
Joined : Jan 2006
Posts : 674
Posted 6/11/2012 7:22 PM (GMT -8)
I hope you aren't having a problem, but I am guessing that everybody has that issue to some extent. Mine is only 1.5 years old and I have the sitting issue off on. My doc explained that when you sit with weight on the cuff, an amount of fluid flows back into the reservoir then if you move or stand you will leak till the cuff can reinflate. You probably know this. My AUS doesn't seem to leak at all or at least very little due to stress but there is that sitting thing. So, quit talking about revisions!! these things are going to last 10+ years. If my AMS700 broke it would be bad but if my AMS 800 broke it would be terible.
I don't remenber your condition before the AUS but I was 100% incontinent, after RRP I never pee'ed even once during the day till my AUS was put in. So I sorta expect that any deflation will cause me to leak because I have also zero ablity to control.
You got me thinking, I guess we can go back to the doc's that put ours in an maybe get some type of urodynamics test to confirn loss of cuff presure?
Well let us know if you go any futher since you are our senior AUS guy. I remember you and tall guy helping me along before I got my implants.
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Gene214
Regular Member
Joined : Mar 2007
Posts : 422
Posted 6/12/2012 10:31 AM (GMT -8)
Ok, I had better clarify why I even asked the question about revision.  In Dallas, the doctor who did my implant was/is an experienced reconstruction uro & instructor @ UTSouthwestern, having gained much experience in Afghanistan/Iraq, putting soldiers back together.  My device is still working after four years, & I don't think I could ever go back to where I was before he "fixed" me with the 800 AUS (& 700 IPP).  I also had absolutely no control except at night.  When I stood up, it all came pouring out and leaking all day long... into 8, 10, 12 pads per day.  I had tried all the things possible, after my radical prostatectomy (by a smarty, know-it-all surgeon, who didn't know diddly).  I went for 18 months post-surgery with no relief or erection.  Cutting this story short, after the AMS 800 & 700, I have my life back.  But I get terribly frustrated by that involuntary releasing of the AUS after I "mis-sit", which is often.  I had 39 radiation treatments just a few months ago, & I think it affected my urethrea where the cuff is.  So at the end of the day, my one-per-day panti-liner is a little more full than it used to be.  So I'm thinking, "Should I talk to uro about a revision?"  I know the answer is "no".  But I feel that under "obamacare" (after it's fully implemented), and at my age (69), I'll not have a chance with Medicare & suplemental.  Or maybe, just to shorten this whole thing, I'm just worrying too much.  Come to think of it, I am worryingl too much & even with more leaking than I likle, it's still 199 % bettr than before. Gene214

P. S. To all of you with no urine control & having tried everything else to regain continence, get the AMS 800 &, if needed, like I did, get the AMS 700 too.  If that sounds like a commercial, maybe it is.  It's my testimonial.  I just like being normal again (including making love again with my sweet wife).

 

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Neoman
Regular Member
Joined : Nov 2010
Posts : 197
Posted 6/12/2012 3:18 PM (GMT -8)
I have to watch how & where I sit, even on the side of our bed where the metal wire is that keeps it from sagging, wooden chairs, not so padded chairs, I even sleep with a pillow between my legs so I do not squeeze the cuff..

I do know they can put in a more stricter cuff that clamps down more..

I feel that that may cause some chaffing on the uretha and there is a possibilty of a problem with that. No cure if your uretha becomes damaged.. So I am happy with a looser not so tight cuff.. though I have to watch it a bit.

I think the doc used a looser cuff on me because I did have some uretha damage from the prior surgery implanting the cuff..

NEO
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tvwohio
Regular Member
Joined : Sep 2010
Posts : 176
Posted 6/12/2012 3:55 PM (GMT -8)
I have to watch where and how I sit. I found out if using some of the lift equipment at Y, my bulb hits perfectly and fountain is seen. I just hit it wrong last Thursday nite cleaning the car and flows great - couldn't stop the darn thing.

The first time it happened a Honda CRX front seat got me and rather embarrasing until it stopped - just arrived at restaurant so hit rest room and TP'd underwear heavily.

I think all who have it agree, there can be occasional problems but the 8-10 pads without is small price to pay.
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knotreel
Veteran Member
Joined : Jan 2006
Posts : 674
Posted 6/12/2012 8:16 PM (GMT -8)
remind me not to let you ride in my car!
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tallguy
Regular Member
Joined : Oct 2009
Posts : 427
Posted 6/14/2012 5:56 PM (GMT -8)
Hi Guys,
I have not been on HW for a while. I am now two years with my AUS. I do get the occasional leak if I sit wrong but can't really put a finger on how it happens. I still wear a panty liner to catch residual stress leaks or dribbles because I don't have patience to wait after going for the cuff to close. So even though I can't claim to be 100% dry it is 99% better.
I have no idea how long this thing will last. They told me 5-10 years. I get the urge to pee about every two or three hours, even at night. It's always been that since RP so my AUS gets a good deal of use. Not sure how that will affect life. My doc said use it as often as you need and don't worry about it. I know some say to deactivate at night. Mine has never been deactivated. Doc said there is no data to say that would extend life.
It would be good to hear from some long time users but they all seem to go silent after getting AUS.
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Neoman
Regular Member
Joined : Nov 2010
Posts : 197
Posted 6/15/2012 3:10 AM (GMT -8)
Tallguy,

I've read that before, about deactivating at night... To my way of thinking, I think that would put to risk the device failing.. that button should be an occasional use button, like if you are in ER or the hospital for surgery..

Like you, I want to extend the device as long as possible.. like use it as little as possible so it does not wear out... Dr. Boone said he had one guy get 15, another 5, most in the 10.. I want to talk to the 15 year guy..

I do try to only use it when I need to,, better said than do however.. I push the button a couple of times until I think I am empty..(I have a neo bladder and have no sensation of being full or empty).

NEO

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knotreel
Veteran Member
Joined : Jan 2006
Posts : 674
Posted 6/15/2012 5:33 AM (GMT -8)
Neo, Dr. Boone, he did my AUS too. I really liked him. He and another doctor, I think at Johns Hopkins did a small study on weather there was any advantage to deactivate at night. They published a paper that conculded that there was no advantage. His group that he followed did not deactivate and the other doctor's group did. I wouldn't be surprised that there was a gentlemenly wager involved as well.
However, that said, I do deactivate about once a week just to stay in practice. I really don't trust that hopsital personel would do it right should the need arise. I don't even think that just any uro would know what to do as well.
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tallguy
Regular Member
Joined : Oct 2009
Posts : 427
Posted 6/15/2012 3:02 PM (GMT -8)
That's probably a good idea to practice deactivation. I thought about doing that but never got the nerve to try. I did it in the Doc's office and it seemed pretty simple but I kinda worry that if I deactivate will I have any trouble getting it activated again. I know that sounds silly but......

How about giving us a brief description of your technique to deactivate? By now you should be a pro.

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knotreel
Veteran Member
Joined : Jan 2006
Posts : 674
Posted 6/16/2012 7:13 AM (GMT -8)
When deactivating, I follow the AMS instuctions, that is squeeze the pump bulb several times till it is completely flat, then wait 30 seconds and then press the little lock button. When I press it I don't get a pop or click but it always locks like it is suposed to. The first time I tried I did not follow the instructions and squeezed the lock button too soon and there was not enought fluid in the bulb to unlock, bit of a panic. When that happens AMS has a proceedure but that is not as easy as it might be, but if you wait a full thirty seconds enough fuild will have refilled the bulb so that there will be no problem.
so, that is why I keep up my own ablity to operate this feature and I really doubt if that will happen with some other medical personel who is not very familiar with these. But even if they screw it up it can be reactivated.
Oh, if you do this deactivation correctly, all you have to do to reactivate is squeeze the bulb once till you feel a little pop and it is done.
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Brolin
New Member
Joined : Feb 2011
Posts : 4
Posted 6/16/2012 5:50 PM (GMT -8)
I had my AUS installed 2 1/2 years ago at Duke. The Dr. (who claims he has done over 1,000 of these) said to deactivate every night. AMS just came-out with the smaller cuff and that is what he put on. I would like to hear more about the study on whether to deactivate or not.
He also said to expect about a 10 year life of the AUS (+ or - )
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Gene214
Regular Member
Joined : Mar 2007
Posts : 422
Posted 6/17/2012 5:59 PM (GMT -8)
Since day one, my AUS has been activated only once & that was by the uro who implanted a device used to guide the radiation beam.  My original doc said not to worry about deactivating, although I have concerns about never havingl tried it.

 

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Gene214
Regular Member
Joined : Mar 2007
Posts : 422
Posted 6/18/2012 3:58 PM (GMT -8)
In the first sentence above, "activated" should have been "de-activated.  It stays activated 24/7
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