I think it's probably an opportune time to round this off.
The AMS-800 is working well, and is so unobtrusive that occasionally I forget it is there. One thing that did worry me before it was implanted was whether there would be some pain from having three things in the scrotum instead of two. In practice, however, there is plenty of room and no pain.
The pump unit is still very slippery and I guess will remain so. That is probably a result of the extensive anti-infection coating on the components of the AUS.
Some very slight leakage can result from sitting on a hard seat, possibly because of distortion of the cuff. I have yet to try a bicycle to check if there are any issues.
Apologies to those afflicted with ED, but I can confirm that the AUS does not interfere in the slightest with erections. If anything performance is a bit better because there is no longer such an unpleasant mess down there. I should add that my testosterone replacement therapy is beginnng to kick in so that may be a contributing factor.
My consultant has fixed up a follow-up appointment in three months with the proviso that it can be cancelled if the AUS is behaving itself. Beyond that he would like me to book an annual appointment to make sure everything is OK.
I'll put this thread into a more concise form and let Prostate Cancer UK have it for inclusion in their website if they think it would be useful.
As Christmas presents go, this one is pretty darned good.
Edited by member 15 Dec 2015 at 21:06
| Reason: Not specified
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
So pleased that at long last things appear to be going well for you Tony
Merry Christmas
Luther
User
Tony
Bravo what a wonderful update, I am so very happy for you.
Merry Christmas
xxx
Mo
User
Really pleased for you Tonyhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif
User
So pleased Tony it gives me some hope if my incontinence doesn't improve.
Have a great dry christmas.
Malcolm
User
T
Good news, sounds like the wait was well worth it.
Thanks Chris
User
Kids inheritance well spent then Tony. !!
Glad it all seems to be proving it was worth it.
We can't control the winds - but we can adjust our sails |
User
Five months on from activation, the AUS and I are still friends.
At first, occasionally I would forget it was there and wonder why there was a bit of a pain and no result when trying to wee, but now using it is just a part of life. Operating the pump still needs two hands, one to keep it steady and the other to squeeze. I’ve tried one handed operation, but it’s a bit like trying to get hold of the soap when you have dropped it into the bath. The result is that public urinals are still for emergency use only because of the amount of undressing needed.
As has been observed previously, there is still a tiny bit of leakage that is easily contained with one of the very smallest of pads. The level of leakage cannot be measured by weighing the pad because it dries out during the day. The main cause seems to be sitting upright on a relatively hard chair and so distorting the cuff slightly. This has put me off trying out the bicycle for the moment as I don’t want to risk damage to the cuff; however I am looking (but not terribly hard) for a new saddle to reduce the pressure. Also (ahem) there may be a some erectile tissue under the cuff as an erection can, very occasionally, lead to a small leak.
Really, the major benefit is the fact that I no longer have to worry about incontinence before doing anything. I am still finding spare pads stored in coat pockets, the car glove compartment, bags and cases. I just don’t need them any more!
The AUS isn’t a perfect solution – only a fully-functioning natural sphincter is perfect – but for me it is as near to ideal as any mechanical aid can be and I can concentrate on the other things in my life. Yes, I do wish that I had not been quite as pig-headed over preferring the sling. However, of course, if wishes were horses, beggars would ride.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Tony, really pleased that this is holding up better than the sling. Better late than never, my friend x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Tony,
I'm glad to hear that you are getting on well with the AUS. From your description of when it was activated, it sounds like we were both fitted at the same hospital, Birmingham Queen Elizabeth? Surgeon? I had my AUS in 2013, and am still happy with it. Like you, I have to be careful sitting on hard surfaces, but I only wear a pad if I am doing something particularly strenuous, or if I think it may be a long period before I can pay a visit. I also need two hands for activation, but have no problems with urinals. I wear pants that give easy front access. And it is possible to give an activation squeeze through the material of my pants. I actually have more problems with a WC, because when I activate there is often a strong initial flow that is not aimed in the right direction because both my hands are busy. So if I am somewhere other than in a public loo, I usually sit down. I also do wear a medical alert pendant with "Do not catheterise" inscribed. Then a note of the device fitted.
All in all, having the AUS was a turning point in my life. A turning point very much for the better. Take care
Edited by member 23 Jun 2016 at 07:54
| Reason: Not specified
User
2ems, how fantastic to read a positive report of the AUS - it will bouy up those considering the possibility or thinking they will forever leak.
One thing though - it is against the rules of the forum to name consultants or other medical staff so perhaps edit your post before the moderators do?
Edited by member 22 Jun 2016 at 22:41
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
The AUS and I are cohabiting well. I had to have mine put in privately (our NHS health board is in special measures and total chaos) but it was well worth the expense. Still looking for a suitable saddle for my bicycle though.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Hi Tony,
Overall, excellent news for you.
atb
dave
Do all you can to help yourself, then make the best of your time. :-) |
User
Good to hear things are working our for you Tony.
Xx
Mo
User
had a good read of your diary many thanks its very helpful for me ill keep you informed many thanks gary
User
Tony's diary has been great for me, I am booked in for the New Year to have one fitted. Thanks Tony
User
I now have a date for mine to be fitted, Feb 8th so I thought I would read your diary again Tony. It is great to be able to read up on the subject from someone who has gone through it all and taken the time write about it warts and all. I must say I'm a little anxious not from what you have written but the thought of another op poking around down there.
Thanks again Tony I hope everything is still functioning well a year on.
Regards
Malcolm
User
Hi Malcolm
I'm getting everything back under control now. Don't panic, this is rather reassuring because it means that the AUS does allow some passing under stress; it does not shut absolutely tight - that would not be good for the kidneys. Over the past 8 weeks or so I have had a really lousy cough and cold. The coughs in particular have caused slight leakage (easily contained in a simple pad), but now the level of leakage is back to normal, i.e. virtually nil.
Even after all this time, I can forget that I have the AUS and wonder why there is some pain and nothing is happening...
Apart from the strictly physical things (no longer having cancer and having few side-effects from the cure), the best bit is being able to get on with life and to stop spending time in dark, dark places.
Good luck in February!
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
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Artificial Sphincter (AUS). Diary of experiences.