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Artificial Sphincter (AUS). Diary of experiences.

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.

User
Posted 20 Dec 2018 at 21:34
Just a quick update. The AUS is absolutely fine and continuing to work consistently. Unfortunately I have had to discontinue the TRT because my haematocrit reading was too high. I don't want to have to spend another night in A&E (my GP thought I was having a heart attack) so I guess I'll have to put up with the low testosterone.

Psychologically, I have been much better than while I was leaking, and I even managed to drive through Birmingham last week, passing the hospital with barely a shudder.

Tony

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

User
Posted 31 Dec 2018 at 16:25

Hi All

Just wanted to say a big thank you for all the comments and information. I had my AUS fitted on the 17th December 2018. 2 weeks ago. It quite tender at the moment but I'm able to feel the device. I have very heavy leakage since my operation to remove my prostate just over two years ago. My life has although been very active. Playing golf twice a week, Bike ride once a week for about 12 miles. It's very hilly around Leeds. Not sure if I should mention this but I also take my 4-year-old grandson swimming once a week. ( I know I will leak but with all the chemicals I'm thinking it's ok?) But as others have mentioned it's all been about when I can change pads or find a toilet or private place! Hopefully, it will be much better in a month or so. I will get back to you on my progress!

User
Posted 30 Jan 2019 at 16:51

Hi All

Just a quick note. I have been activated just about a week ago. All went well and I would say I'm 95% dry. This is soooooooooo much better than the place I was before the operation.

 

I'll get back at a later date and give a bit more information. It's not perfect but to me, I'm in a much better place at the moment.

User
Posted 30 Jan 2019 at 19:41
Nice to hear 2 good news follow ups for that piece of kit.

atb to you both

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 30 Jan 2019 at 19:53

Thanjs for update. Useful to know.

A surgeon has offered me this but i want to wait and see if things imorove over time and doing PVE.

 

Ido4

User
Posted 16 Mar 2019 at 15:19

Thank you Tony and co for a great diary of events regarding AUS's. 

Following a visit to the consultant I've been offered an AUS to hopefully solve my leakage problems after the removal of my prostate in January 2018. As my PSA has started to move up after 12 months I've been put on HT and I'm waiting to find out if I need to have radiotherapy or if HT will keep things under control. Based on all the reports on this forum and a favourable result from the consultant I hope to join the AUS club later this year.   

Edited by member 16 Mar 2019 at 18:03  | Reason: Not specified

User
Posted 16 Mar 2019 at 17:25
Still working.....
Tony

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

User
Posted 15 May 2019 at 13:11

Had AMS sphincter fitted in February, very bruised, no pain but lots of discomfort. Switched on in March complete success! great relief; back to kayaking at a good pace four hours once a week, portaging 25kg kayak with no leakages; me, not the boat! Very hesitant about trying my first love of cycling. I spoke to my consultant who confirmed that there would be discomfort but cycling would not damage the AMS. After some trial and error I would recommend that anybody coming back to the bike should: Fit a prostate friendly saddle, drop the nose of the saddle a couple of mm this will take the weight off the tender area, it will however put more strain on shoulders, arms and neck so I recommend raising the handlebars a couple of  mm. I have also fitted a gel saddle cover (£12) I wear padded cycling shorts and a small pad, just in case. My first ride was 10 miles+ on roads I know well, on the hilly sections where I would normally get out of the saddle I now drop a gear, stay in the saddle if comfortable. The only time I got out of the saddle to have a stretch I sat down without thinking and activated the device! luckily there was not a lot to lose but a lesson learnt. I'm back on the bike and although there will be compromises the benefits far outweigh the negatives. I've shaved off my beard, mudguards off this afternoon I'm nearly a racer again! See you up the road.... Old Roly.

 
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