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ARTIFICIAL SPHINCTER (AUS) DEVICE

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Posted 1/13/2011 4:50 PM (GMT 0)

Good afternoon.

I am hoping there is someone out there who can help me.

I am a 67 year old male living in the U.K.

Following 9 years of all manner of treatments,some of which were cutting edge,I have sadly ended up with a catastrophic urinary problem as a result of a Uro Rectal fistula caused by overtreatment.

The result of this is that my sphincter has been destroyed so I am incontinent and am only saved by a Suprapubic catheter and a bladder neck stricture.

It is proposed to fix the stricture and follow this up with the implant of an AUS device at the UCLH in London.

Although I have requested the opportunity of speaking with someone who has undergone this procedure,I have drawn a blank due to the security of information act.

Has anyone out there had an AUS fitted ,if so, could you get in touch for advise as to how you have coped with it and any positive/negatives.

I understand how it works and roughly what is involved in fitting it,but have read that there is quite a high insidence of failure due to Atrophy and infection.

Before I proceed down this path I obviously need to consider the pros and cons.

Can anyone help please?

Best wishes Tiger74

Posted 1/13/2011 8:11 PM (GMT 0)
I would like to help but I just got my implant two days ago. There are a number of guys on this site who do have the AUS and have had successful outcomes. My doctor did not make any promises to me about how well it would work but only said it would be better and that was enough for me to go ahead. The AUS appears to be fairly painful at first, there are at least three incissions on my implantation and I (and you if you proceed) will be sitting on the one where the cuff is placed. Day one it was bad, sat about a 7 scale and day two about 2-4. Do some searches on AUS on this site and you will see lots of discussion. Good luck on making you choice and soory to hear that it has come to this.
Ron
Posted 1/14/2011 12:58 AM (GMT 0)
Tiger,
I have had my AUS AMS 800 since August and it is working fine. You can read my profile below to see my journey from RP to a male sling implant and then the AUS. Also I have included links to  some threads I started one of which is my journey with the AUS.
As noted, there is a wealth of information on healing well about the AUS. You will learn a lot. My email address is in my profile if you prefer to email me directly.
Good luck!
Posted 1/14/2011 1:03 AM (GMT 0)
Tiger,
To save you a little time, this is the link to my AUS implant story/journey.
Just copy and paste this link and it will take you to the thread.
https://www.healingwell.com/community/default.aspx?f=35&m=1847812
Posted 1/14/2011 3:51 AM (GMT 0)
Tiger, I've had my AUS for 30 months.  Excellent, excellent results with only a few drips every day, compared to 7-8 big pads of urine before implant.  If you can get through your health care system in the UK, by all means find an experienced surgeon & get it done.  But don't let just any surgeon do it.  Find an experienced one.
Posted 1/14/2011 12:34 PM (GMT 0)
I am most greatful to you guys for the quick responses.

If you have time please read 'MY STORY' on my RAF 74 Squadron Website.

The whole story will probably send shivers down you back.

http://www.74squadron.org.uk/medical_matters.htm

If you don't have time to read all chapters,please do read chapter 8.

 

I am under one of the leading Surgeons in the world.Professor Mundy at UCLH London,so hopefully there should be minimal problems,assuming of course he is still prepared to go ahead.

Please do keep in touch with progress and let me know of any adverse conditions or other tips.

One thing I meant to ask is ,how frequently you 'Need to Go' and how about at night?

Best wishes

Tiger

p.s I am very very new to all this forum stuff.Is a signiture all the info I see at the bottom of your messages?

 

Posted 1/14/2011 4:19 PM (GMT 0)
Tiger 74

I had bladder cancer and needed a AUS. I as well as others have several blogs here you can read. Just page back a few pages and you can read our comments. "AMS 800 update" & "AMS 800" are the titles you can look for.

I found a lot of encouragement for the device from these guys here that have had it. Gave me some tricks for me to try. Now I only had two incesions, one between the rectum and then up on my abdomum (sic). You will need 6 weeks healing. But when it comes time to use it. Man it really works well.

To get statistical information, I Googled "AMS 800" and then you can find the studies on the subject. I did not feel the device had any more failure ratios than anything else we deal with. The life time is between 8- 10 years, 10 being the mean, up to 20 years in some cases.

Failure could be in just a part of the implant. Which could be replaced (just the part) with out major surgery. Failure could be weeks to 10 years for that part. Infection is the main issue. I had my uretha nicked by my first surgeon and they had to take part of the implant out. Then I got an infection and it all came out.

Just got it back in and am loving it. (I also have fistula problems. Still have. Will have surgery in Feb to remove one that goes from my neo-bladder to my tummy).

Do the research. Google the subject several different ways. Also google AUS or AMS 800 Problems. That gave me some insight. I also went on UTUBE and saw an implant being done.. Not fun to watch!! ha ha

NEO
Posted 1/14/2011 9:00 PM (GMT 0)
Tiger, this forum is available to all who join it, as yourself.  We will not be contacting you personally but if you have any more questions, just post them here and then we will get back with you by adding to your post.  That is why this forum exists.  We trust your quest will be successful.

gene214

Posted 1/15/2011 3:55 PM (GMT 0)
Gene214

Thanks,I'm getting the hang of moving from one link to another.Can I assume that the 'Signiture' is the info posted immediately after the message content.eg the basic medical history?

I have been encouraged so far especially by the contact with tallguy.

Best wishes

Tiger74
Posted 7/4/2012 9:28 AM (GMT 0)
Please can anyone give some up to date info on the artificial sphincture,I have a big problem with very slow urine flow with scar tissue in the urethra. I am on the waiting list for an aus as if left untreated the kidneys will in time fail.have heard that very few of these have been fitted in the uk ,does anyone know who can do this op and what is the likely success rate
Regards
Fredqqq
Posted 7/4/2012 11:58 AM (GMT 0)
I do not see what slow urine flow has to do with kidney failure..

The AUS keeps you continant.. and if you have scar tissue in the uretha, then a AUS which is like a clamp on the uretha could cause problems. And slow your urine flow even more.

It would seem to me they need to remove the scar tissue first..

Are you continant? 

NEO

Posted 7/4/2012 4:25 PM (GMT 0)
Tiger74, yes the signature contains any pertinent medical info you may wish to share. It is limits in size however, to 400 characters, including periods, spaces, etc. To create a signature, look at the top of the screen on the page that shows the various subjects or threads available to read. Look to the left, for a button saying "My Profile". Click this button and it will take you to the next screen, where you will see on the next button "Edit Profile" in the middle of the header. Click this button and it takes you to the personal data section. Now scroll all the way to the bottom and you will see the signature block. Enter your info there. when done, remember to click the 'Submit' button, under the signature entry block. Good luck, come back if you hit any snags.
Posted 7/4/2012 10:18 PM (GMT 0)
I have had my AUS since Jan 2011 and Activated March 2011.

I had Incontinence for 10 years with last 6 months hell since Uro had to clean-up some nasty scar tissue.

Is the AUS perfect, no, you may have some problems

1) Accidentally hitting the button when sitting - especially in some car seats - so you have to be careful

2) Exercising using Wt Machines - they seem to hit my button perfect - Sometimes

3) At night, the AUS helps but sometimes urine builds up and you leak - little bit not much but some

4) You don't wait long enough for the AUS to close and you pee down your leg or in your undies - not much just pain.

5) You don't go to the bathroom enough - leaking .

All the above are minor, but I have experienced.    Sometimes it can be embarassing but stuff happens.

Would I put an AUS in again, based on my 10 years.   I was STUPID not to do it sooner.

Only Caveat - make certain the Surgeon does many of them not just once and awhile.  My Uro could have put it in, but it stated it only did them once or twice a year and it was a disservice to me if he didn't get it correct.

I went to Cleveland Clinic and Dr Montague was doing as many as 6/week.  He knew what he was doing.

My Uro checks it since he knows how it works and what to look out for, but that's about it.

Go For it.  

Tom West Central Ohio

Posted 7/5/2012 7:25 PM (GMT 0)
 

I have had the AUS for 4 years and generally, I am very pleased.  Comparing it to 18 terrible months of complete incontinence, it is a "dream machine".  But, as has been noted, it is not perfect like the one God created for natural, normal and automatic urine control. 

 tvwohio, I want to comment on a couple of things in your reply.  I too have had the sudden leaking.  However, I do not think the cause is accidently hitting the "button", which is actually a pad which one squeeses betweenl one's forefinger & thumb.  (There is a button on my inflatable penile prosthesis, but that's a different story). It has been my experience that the AUS cuff releases when you sit in such a way which puts pressure on the cuff around the urethra, which does in fact release the flow of urine.  I have had this happen many times, but in my own experience, it never dumps the entire  bladder. It is a quick, temporary release that can wet the pants, if one does not wear a panti liner (like I always do to catch drips).  I try very hard to sit so as not to straddle an anything like a slight rise in a metal folding chair or a soft coushion which pushes upward.  That pressure between my "butt-bones" will do it every time.

As far as dribbling after peeing, you've got to be patient & leave your penis out just a little longer and even "milk" it a bit to squeeze out the remaining urine in the urethra.  Granted, in a public restroom, it does make you feel a little self-concious standing there and maybe appearing like you might be doing something else, but... it's really worth it.  I hope this is not "too much information".

Gene214

Posted 7/5/2012 10:34 PM (GMT 0)
I think Gene nailed the occasional sitting induced leaking. This is exactly what my Doc told me. That dicussion was about riding a bicycle, he said it won't hurt me or the device (probably) but the cuff will get deflated by pressure on it from the seat, basically causing leaking while riding. The way these things are made, there is nothing but the preset pressure in the reservoir keeping pressure on the cuff. The pump valve unit not "locked" like the IPP pump is when that unit is inflated. The only locking that is done on the AUS is to lock it open which a lot of us users never do.
So bottom line is, it doesn't take that much additional pressure, like from sitting, to force some fluid from the cuff back into the reservoir and if you sat perfectly still you probably wouldn't leak at all. But........
like Gene said, it is not nearly as good as the orginall we were born with, but it aint bad. I do know what my life would be without the AUS and that was not good. This thing started a year ago, so Tiger let's get this thing done!
Posted 7/5/2012 11:02 PM (GMT 0)
Ditto what the other guys said. I don't think there anything that results it totally dry and no leaks ever. Still, it gets your life back and you can function normally. I rarely leak enough to get my pants wet. The thin panty liner I wear catchs the residual and stess leaks that will occasionally occur.

It you did not hear about this little tip from reading some of the old posts I repeat it here:

You can pee one handed at a urinal by holding willie in one hand and run the other hand inside your pants and underwear to activate the bulb. When you are done take the hand inside your pants/underwear and press on the urethera behind the scrotum to push out any residual pee. This will greatly reduce the amount of residual that may leak out before the AUS totally closes which will take 20 seconds or so. I do this and don't wait hardly at all. I find it more helpful than "milking" willie althought that helps also.

Just do it! You will be glad you did.

Posted 6/3/2019 11:04 AM (GMT 0)
Tall guy y'all still out there I'm looking at having the AUS June 28th 2019 hoping for a little bit more encouragement had two slings both fail. Leaking a little bit here and there doesn't sound good I was hoping I didn't have to wear anything rats
Posted 6/3/2019 11:36 AM (GMT 0)
Hi Tiger74

I had an AUS fitted in December 2018, activated in January 2019. Procedure was perfrmed by Jeremy Ockrim. Very pleased with it and have very few issues with it. I do still get some stress incontinence - one sneeze is fine, but 3 or 4 in a row, or a coughing fit is not so good. I have had no issues with accidental button hitting and very minimal leakage issues generally, so much so that it is quite rare that I decided that i will need a pad - only if I know I will be walking lots or have a cold.

Nightimes are fine, I do generally wake up once and feel the need to go, but when I sleep through there is no issue.

I do go more often than before, this has to do with the bladder capacity having been reduced whilst incontinent and the urge can be quite painful - I think that is due to the pressure now building in places not generally built for handling it. I will not lie, the op and aftermath was painful, but ll this is quite a small price to pay for the freedom of not wearing a catheter. I would do it again when this device gives up (they have a life of around 10 years I believe)
Posted 6/3/2019 12:01 PM (GMT 0)
Your sensations are what I felt. I’m 9 years out with mine, sneezing, sitting on hard surfaces, bending, coughing, and so on can lead to leakage. I do wear a pad, and as time progresses, the device is not as “tight “ as early on. I have a “new bladder” where capacity was reduced to about 2 hours then I have to void. 24-7.
I have little sensation other than a slight discomfort when the neo is near capacity.
To offset leakage, I put a paper towel between my pad and me to catch the leaks.
I hope to keep mine as long as possible
Neoman
Posted 6/3/2019 12:04 PM (GMT 0)
Hello Alan tell me I have two slings I can get an erection when I go to have a orgasm it's kind of hard with a sling when my urethra swells to the sling but I can get it to come through but it hurts a little do you have a problem when getting a nut with the AUS?
Posted 6/3/2019 1:03 PM (GMT 0)
H Ubetternoit

I have complete ED, so cat help you there
Posted 6/3/2019 2:55 PM (GMT 0)
Ok my God we should of went with radiation
Posted 6/3/2019 3:46 PM (GMT 0)
I had surgery, then salvage radiation - was all good after the surgery, salvage radiation was not good to me. Seems to me one or the other is fine as the primary treatment. I was just unlucky, no indcations before or during surgery that anything more was needed - just a rapid rise in PSA post surgery.
Posted 6/3/2019 4:51 PM (GMT 0)
Ok how old Ru and how you doing now with PSA?

Post Edited (Ubetternoit) : 6/3/2019 6:09:30 PM (GMT-6)

Posted 6/3/2019 5:10 PM (GMT 0)
I am 56, going on 57. 49 at time of DX. PSA all good now - undetectable.
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