Artificial Sphincter (AUS). Diary of experiences.

User

Posted 06 Mar 2018 at 16:25

Two years on and the AUS is continuing to work well. After a bit of practice, I have mastered (rather clumsy) one-handed operation so I am not quite as dependent on finding a vacant cubicle in the public conveniences.

As I mentioned before, with a heavy cough and cold, there is some leakage. Unfortunately heavy coughs and colds seem to have been par for the course over the past three winters, probably more to do with ongoing low testosterone. My TR therapy has to be kept at a fairly low level, increasing to "normal" levels is messing up my red cell count. I'd rather not have a stroke so I guess I'll just have to put up with the coughs and colds each winter (yes, I have had flu and pneumonia injections). During Spring, Summer and Autumn, leakage is minimal to zero.

Fortunately there has been no recurrence of my stricture, so the Optical Urethrotomy is still holding up. PSA steady at <0.1.

No news is good news....

Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 08 Mar 2018 at 16:19

Hi Tony
Glad to hear it is still working well. Thanks to your dairy I am a year in with mine absolutely delighted with the outcome. I do have a little leakage from time to time but always use a pad so no real problem.
They put the pump on the left side as there were complications on the other side but don't have a problem though mostly two handed.
Although I had nerve sparing I have to inject for rumpty tumpty unfortunately caverjet is nearly impossible to get.
I was classed as T3a after the op, came as a bit of a shock though the blood tests thankfully remain 0.003 just hope that carries on.
Keep us informed how you progress as I am sure it helps people to make their minds up whether to have it or not.
Malcolm

User

Posted 08 Mar 2018 at 19:55

Good to know that you are doing well with the Aus Tony.

PSA looking good too.

Dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 09 Mar 2018 at 16:48

Can I also take this opportunity to thank you Tony for all you have written about your experiences. I joined the AUS club in November, with activation just before Christmas. I’m so happy with the outcome of my procedure and was even pleasantly surprised at how little pain was involved.
We are forewarned that the AUS is not intended to be 100% leakproof, and so it has proved for me. But mine is not too far off it. Yes, coughing or sneezing (and dare I say farting!) tends to cause a small seepage, but I have learned to brace my pelvic area in preparation and this seems to help. I also find that I leak if I hunch forward in the armchair so I try to remember to avoid that position. I don’t generally need a pad and am willing to accept the very occasional need for a quick change of underwear as the price of going without. I tend to use a pad only on occasions where it’s particularly important that this doesn’t happen!
I’m actually about to proceed to the next stage (for me anyway), which is a penile implant later this month. I’m hoping this will be just as successful!
It would be great to master one-handed operation of the AUS as currently I’ll admit it’s not terribly pleasant when I have to use a public convenience. But as I’m about to be reconfigured down below (again!) which may alter the necessary technique, this is not something I’ve yet tried.
I have to say that I too opted for private treatment in the end, as unfortunately I found the wait for NHS treatment, at least in my part of Scotland, unacceptable.
Good luck to Tony and all other “club members”!
Andrew

User

Posted 10 Mar 2018 at 13:39

Hi.At the moment I am waiting to have a AUS fitted and I would like to thank you all for the information that you are supplying on this site.l am nearly three years now into the dreaded drips, and check my mail every day hopefully to find a letter that will give me the date for my operation, I was told that I would have a four months wait, now with only one month left to go time is really dragging. One question I would like to ask, I have been a keen cyclist for many years, do you think that after the operation (dry) cycling is a possibility? Again thanks. Chris.

User

Posted 11 Mar 2018 at 08:13

Re: cycling. I'm really not sure. The cuff of my AUS is exactly where the forward (narrow) part of the saddle would go so I suspect it would be easily distorted. Note, this is a touring saddle, not one of the hard variety. Suggest talking to your surgeon to see where the cuff would be placed in your case (mine had to avoid the earlier bulbar sling).

I may have been a bit over-protective of the AUS because I didn't want to do anything that would damage it - I did try sending an email enquiry about cycling to Boston Scientific, but didn't receive a reply. I'll get the bike out in the Spring when the weather gets better to see what happens.

Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 12 Mar 2018 at 10:32

Back to the cycling problem, when I saw the surgeon last,one of my many questions was about this,he informed me that a previous patient had asked the very same question,and that he (the surgeon) had been in touch with the American maker's of the AUS who had replied that the AUS would stand up to any amount of cycling so that side of things is fine, what he couldn't tell me was if the movement of cycling would cause any unwanted leakage. It sounds like I will just have to wait and see. Thanks again Chris. Ps When I do find out the answer to this I will let you know.

User

Posted 16 Apr 2018 at 02:17

Just had an AUS fitted last week...the SCROTUM swelling (up to four times normal!) post op was very uncomfortable and is still present though smaller..can't poop still without tablets but getting there...Tony your diary is inspiring and contains info the surgeons (and nurses) don't tell you..the model AUS I have is a plastic type and about as big as a little finger from the first joint to the tip!..I am wearing level 4 Teena pads but find the Teena "Super 30" ladies pads cheaper and last me about the same time ..90 minutes in "normal" routine and 2.5 hours when asleep..I find urinating into a jug easier as my old fellow has shrunk inside me to be unseen! without the jug, urinating normally gets me wet and spray everywhere!!..i generate about 200ml when asleep but during the day don't need to urinate as it has all leaked into the pad...SO..the AUS when activated in 4-6 weeks will get rid of all that routine from your diary info..and boy I am looking forward to that

Peter

User

Posted 16 Apr 2018 at 07:33

Surgeon "Have a feel around so you can locate the pump ready for the activation of the AUS."
Me "It all hurts too much and I can't tell what's me and what's pump....."

The most (in my opinion) sensitive bit of the body has been invaded; it’s hardly surprising that it would object. Hold tight, it does all get better reasonably quickly. Oops, when I say "hold tight" I don't mean physically! Relief is on its way!

Please keep adding to the diary here so future readers have more sets of experiences to look at.

Edited by member 16 Apr 2018 at 07:47 | Reason: Not specified

Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 16 Apr 2018 at 15:14

Passed a milestone of sorts yesterday. For the first time since activation 4 months ago, I forgot to squeeze the pump when I went to pee! Caused me a moment of concern when nothing came out, but I think it’s an indication of how normalised things have now become. Using the pump must be becoming second nature if I only remember it when I forget it (if you see what I mean!)

User

Posted 25 Apr 2018 at 02:11

It's been two weeks now and the scrotum is still tender and the pump is unable to be felt due to swelling..activation is in four weeks!!.I still take pain killers (mild) and the leakage has subsideda bit.. due I guess to the "cuff" around the uretha?....do AUS fitted people have a medical bracelet indicating "no catherization" as a cather must not be fitted to AUS??..

Peter

User

Posted 25 Apr 2018 at 15:58

Hi Peter, Plenty of time yet for the swelling to go down sufficiently to enable you to feel the pump. Mine was activated 5 weeks after surgery due to proximity to Christmas. By that time I could feel the pump bulb relatively easily although I was still very sore where the pump was irritating my scrotum from inside. Remained sore for maybe another month after that and I used to grit my teeth when squeezing the pump to take a pee! But that all went away in due course. The actual activation where the surgeon squeezed the top end of the pump, which was in an even more tender location, was pretty painful but it only took about 10 seconds and then it was just a question of waiting around for an hour or so for my bladder to fill so that I could use the toilet and make sure everything was working as expected.
I had read that for some people, like yourself, the leakage reduced somewhat or even temporarily went away completely after surgery, but personally I didn’t notice any difference until activation.
As to wearing a medical bracelet, entirely up to you of course. I considered it and asked my surgeon what he thought and his view was that it was probably unnecessary. I decided to do without, taking the view that the chances of my requiring emergency catheterisation whilst not in a position to warn those treating me about the presence of the AUS were fairly remote and I prefer to run what I feel is a slight risk in order to avoid having a constant reminder around my wrist or neck. Others may weigh the balance differently.

User

Posted 25 Apr 2018 at 20:45

The instructions with my AUS (an AMS-800) say that it must be inactivated before catheterisation to avoid damage to the cuff, or more seriously, injury to the urethra. I have a medical alert band - it takes a bit of ingenuity to fit a meaningful message into two lines of 45 characters. In the end I settled for “Artificial sphincter. Isolate before insert of catheter. For help Google 'AMS 800'” . It's just a simple, but bright red, silicone band from the ID Band Company (other suppliers are available).

Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 25 May 2018 at 14:32

Hi.Thanks again to Tony, and everybody else who have contributed to this very helpful information.I Had my A.U.S.fitted on April 18. all went well,along with having the usual tender bits, the pain that i had expected did not arrive.(to my joy) I go to see my surgeon on June 4 for the activation switch on, i am looking forward to that but at the same time apprehensive about it. One question that i would like to ask is what pads to take with me on the big day, the ones that i have in mind are Depend guards for men and also shields for men, or i might just take a couple of my old faithfull Tena comfort mini with me until i find out just what leakage i have. Tony i have been checking round about cycling saddles, the one that i think that is most suitable for our problem is SELLE ROYAL comfort for cyclists RESPIRO,

Edited by member 25 May 2018 at 14:56 | Reason: Not specified

User

Posted 26 May 2018 at 09:25

After switch-on, the result is instant, so only the lightest protection should be needed. However, being a natural pessimist (goes with my former occupation), I'd have a back-up plan just in case the switch-on has to be delayed for any reason....

Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 05 Jul 2018 at 15:42

Hi.Its now just over two months since my switch on and i am very pleased with the AUS. It's still a bit of a fumble around at times but no real problems. Like advised i am using the smaller pads, Tena men protective shield,i find these right for me,as yet i do not seem to have any leaks other than the odd drips whilst using the AUS. My approach to using public urinals from the start was that i was going to, the way that i do this is to release my belt so that it would still hold up my trousers, unfasten my top button undo my zip and use two hands as explained to do the job, up to now it is working fine that way and i know it will get better. I go to see my consultant in September when i hope that will be the end of this long and hard road (well for now anyway) i will keep in touch and hope that my contribution could possibly help others, for i know the information that i have received and knowing that there are other people with the same problems has really helped me.

User

Posted 05 Jul 2018 at 15:50

Hi Chris encouraging news I had my aus fitted last week my stream is a bit slower but I am reassured that everything is ok. How long did it take your body to recover after surgery. My biggest fear is that once the device is working I will not be able to open it and end up with retention .

best wishes

Andrew

User

Posted 06 Jul 2018 at 07:44

Chris - very useful feedback thanks! Only trouble with the two-handed approach is trying it with winter (remember snow and rain?) clothes on and carrying shopping bags at the same time. Perhaps we should just be brazen "Yes, I have an AUS. Now stop looking and concentrate on what you are doing....".

Andrew - the only way that an AUS will cause retention is if the cuff fails in the closed position. Being an engineering product, it will have been designed to fail safe, i.e. open, so the only problem is if you forget to operate it (yes, I've done that several times and wondered why nothing is happening) or if you are unable to operate it - that's why I have a medical alert band. I was wondering about getting a tattoo with the medical alert message, but that may be a bit over the top....

Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 06 Jul 2018 at 08:44

Chris, great to hear things are going on ok. I had mine activated about 18 months ago, best thing ever. I still use two hands as the button had to be sited on the left, in public I just open trousers and get on with it bugger what anybody thinks. You seem to have the right attitude but for those a bit more shy they could get a disable key for more privacy, probably going a bit far.

Trying to remember healing time seemed a while at the time but actually not to long at all, just keep the undercarriage clean mine split open a bit so probably took a little longer. Once it was activated on time no probs at all. I have a chest infection at the moment and coughing a lot so a little bit more seepage than normal, the one pad is more than enough to see me through the day.

Malcolm

User

Posted 06 Jul 2018 at 10:54

Hi Andrew, it's a long, long wait to switch on day but believe me it's worth it,i am certain that you will be just fine operating this wonderful device, as for how long it took to recover after the fitting, i would guess about two weeks, the memory soon forgets pain,well mine does!
Tony, I have thought about a tattoo on my lower stomach with a medical alert, but i think that i will go for a neck dog tag with the message on.

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Artificial Sphincter (AUS). Diary of experiences.

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