Here is a diary of my experiences with the installation and use of an Artificial Urinary Sphincter (AUS).
First, the context.
During 2009, I noticed that it was taking a long time to empty my bladder, at least two to three times as long as other men. My GP referred me to a urologist, and at the same time, ran a PSA test (my first). The PSA result was 1.5, no big deal for my age I was told. My prostate was found to be hard, but not excessively swollen. Initial drug treatments resulted in no improvement, so I opted for a Trans Urethral Resection (TURP), and this was performed in December 2009. The result of the TURP was brilliant with a tremendous increase in flow and no trouble at all with incontinence.
Unfortunately, the improvement was short-lived because an analysis of the residue of the TURP gave a diagnosis of Gleeson 4+3 prostate cancer, but with no sign of any break-out from the capsule. MRI and bone scans suggested nothing unusual outside the prostate, so I opted for laparoscopic removal. This was done in March 2010. There were one or two complications, mainly down to the bladder neck to urethra connections because of the state of the bladder neck resulting from the TURP operation.
On catheter removal a week or so after the LRP, I was not able to hold any urine and was totally incontinent. This state was pretty depressing because, although I had been warned that it might happen, my mind was focussed on getting rid of the prostate as quickly as possible. On reflection, I don't think that the incontinence would have altered my decision to opt for an LRP.
After about three months, I noticed that I had regained some control, being able to hold on from getting out of a car at a motorway service station and making it to the gents without leaking. I discussed the situation with my urologist and he offered a bulbar sling or an artificial sphincter. Because of the signs of control, I opted for the sling on the grounds of a less intrusive operation to put it in place and the lack of moving parts indicating (I hoped) ongoing reliability. For details of the sling, see:
AdVance Bulbar Sling
Following the installation of the sling in May 2011, there was a terrific improvement and to all intents and purposes, I was dry. This state lasted for about six to nine months, but then there was a steady decline in performance to the point where I was again using fairly heavy pads (=TENA level 2).
By the end of 2013, the level of incontinence could be lived with but was beginning to weigh on my mind quite heavily. Following an unsuccessful attempt to get the local NHS interested, I went back privately to the hospital that performed my LRP and the implant of the sling, asking for an AUS. During the build-up to the procedure, a stricture was found and resolved by an Optical Urethrotomy, an unfortunate side-effect of which was setting my level of incontinence back to the three-months after LRP level.
Next : The implant of the AUS.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Some observations so far (four days on from activation).
There is a technique for operating the pump. It is very slippery, so one-handed operation is a bit hit and miss (mostly miss), so the other hand has to be used to grasp the pipes above the pump to stabilise it, then the lower section of the pump can be squeezed to release the cuff. I'll keep an eye on this to see if one-handed operation is feasible with experience; if not, then using a urinal in gents' toilets seems to be out unless there is one with particular privacy. (There is a Victorian example on the riverside in Chester with marvelous marble stalls.)
On occasions, usually connected with a bit of stress - e.g. lugging heavy things around, there can be a small amount of leakage so very light protection is still needed. However the leakage is very small, probably amounting to less than a teaspoonful yesterday when I was putting up and later taking down a PA system (including a heavy bass guitar amplifier) for a performance. Doing the same job before the AUS was activated would have soaked two or three heavyweight pads. No protection can lead to damp trousers because even a teaspoonful spreads to a surprising extent. On reflection, some slight leakage is probably a good safety valve to prevent back-up to the kidneys.
Having released the cuff, it seems to be best to empty the bladder reasonably quickly (say 30-45 seconds or so). If the cuff closes up while urine is still flowing (even a little bit), it can be quite painful as the bladder muscles fight against the closed urethra. I have to remember that bowel movements can trigger a bladder release....
There is a very slight, but satisfying gurgle as the cuff releases.
Am I happy with the AUS? Very.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Tony that sound's like a fantastic bit of kit. I really hope it works for you.
As far as communicating if you re unconscious, perhaps you could consider a Medicalert bracelet which you could have engraved with either artificial sphincter or no catheterisation. Just a thought.
The bracelets are apparently recognised by the NHS and ambulance staff
PS Does this help
MedicAlert ID bracelets, necklaces and watches help make sure that you receive fast, relevant treatment in an emergency.
Worn on your pulse point, they carry the international medical symbol and are an effective way to communicate vital details … because every moment matters.
MedicAlert is a global charity that provides life saving services and trains emergency responders.
Edited by member 26 Oct 2015 at 20:02
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
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 08:54
| Reason: Not specified
User
This is a very useful thread. Thanks to all who have contributed. I have suffered with incontinence since RALP in August 2019. AUS fitted Feb 2024. Have been concerned about the pain and numbness in the scotum but it seems nothing untoward from what I’ve read. Looking forward to activation in April 2024.
“You gotta go there to come back” |
User
Fingers crossed it al goes well on the 8th Tony.
Medicalert bracelet seems like a sensible idea. Probably cheaper than a tattoo, and less painful.
atb
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
It must be frustrating to have to wait, but you have waited so long. I hope the next 2 weeks fly by and all goes well and you really do have "dry runs" from then on.
atb
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
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
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 23:41
| 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
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
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
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. |
User
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
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
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
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
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
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
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
Hi Zum Lad,
Unable to reply to your private message as being an infrequent poster I’m prevented from doing so but am happy to answer your query here.
Prior to being assessed for AUS had a flexible cystoscopy which identified a stricture which needed dilatation. Following video uro-dynamic test about 6 months later and further subsequent cystoscopies stricture had not returned.
My AUS implant was carried by North Bristol NHS Trust at Southmead which is I believe the only centre for such procedures covering South Wales and South West England. I had been waiting over a year treatment.
Hope everything goes to plan for you
“You gotta go there to come back” |
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User
The operation to insert the artificial sphincter was carried out on 21st October 2015. The model used is an AMS 800 from Boston Scientific. The procedure involved two cuts, one low down in the abdomen to take a small reservoir and one between the scrotum and anus to install a cuff and the operating pump. For details of the AMS 800, see:
DESCRIPTION OF AMS 800
I spent two nights in hospital, again with a catheter. I had relatively little pain, but a lot of bruising and swelling to the scrotum, much more than resulted from the LRP and sling implant operations. There was the usual abdominal post-operative problem of wind, and it has taken several more days than before for it to subside. Also post-operative constipation set in, but was resolved (somewhat painfully) about four days after the operation. The trip home was quite comfortable, particularly as the westbound carriageway of the M54 is now smooth tarmac instead of broken concrete.
I was on heavy antibiotics from three days before the operation to three days afterwards, and had to shower with an anti-bacterial wash for two days before the operation to minimise the risk of infection. Changing the waterproof plaster on the abdominal cut is easy, but the one underneath is quite difficult to get at, replacement requiring a compliant and skilled spouse and adopting a position that ladies in childbirth will understand.
Currently the AUS is locked off (fully open). I have a follow-up appointment on 4th November to check healing and that all the bits are still in the right place. Activation is planned for 2nd December.
The AMS 800 comes with a warranty (just like a washing machine) and a set of instructions for operating, activating and locking off the device. Also included is a dummy operating pump to practice with. One restriction to be adhered to is that if, for any reason I need to be catheterised in the future, the cuff must be locked open to avoid damage to the AMS 800 or at the worst, puncturing my urethra, so I need to carry the instructions with me. Normally this is not a problem but I am wondering how to communicate the presence of the device if I am unconscious at the time.... maybe a visit to a tattoo parlour?
Next : The Follow-up Consultation.
Edited by member 27 Oct 2015 at 10:59
| Reason: Not specified
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Tony that sound's like a fantastic bit of kit. I really hope it works for you.
As far as communicating if you re unconscious, perhaps you could consider a Medicalert bracelet which you could have engraved with either artificial sphincter or no catheterisation. Just a thought.
The bracelets are apparently recognised by the NHS and ambulance staff
PS Does this help
MedicAlert ID bracelets, necklaces and watches help make sure that you receive fast, relevant treatment in an emergency.
Worn on your pulse point, they carry the international medical symbol and are an effective way to communicate vital details … because every moment matters.
MedicAlert is a global charity that provides life saving services and trains emergency responders.
Edited by member 26 Oct 2015 at 20:02
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Fingers crossed it al goes well on the 8th Tony.
Medicalert bracelet seems like a sensible idea. Probably cheaper than a tattoo, and less painful.
atb
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
Tony
Hope all goes well and you have a nice dry Xmas.
I am 11 months post PM and still pretty much incontinent
OK at night and sometimes if I have been sitting a while I can pee normally. Have been told they will not do anything before the first year is up. I have seen a Phisio who specialises in these problems to make sure I was doing the exercises correctly, I was but they don't seem to work. I am a farmer so quite a lot of lifting and jumping in and out of tractors so I am beginning to get a bit fed up with the situation and will keep a Keen eye on your progress.
Malcolm
User
An interim report pending my visit to the consultant on Wednesday.
Recovery has been a little slower than I expected. A fair amount of the swelling went down on Saturday and Sunday and at last I was able to feel the pump unit. My consultant asked me to feel around the pump to get familiar with it. However, it is still surrounded by some sort of stuff so at this point it is not possible to work out which way round it is. The other issue (to be sorted out with the consultant) is that when the scrotum contracts (e.g. when cold) the pump disappears up inside a body cavity. I am a bit reluctant to try to push it back down because I don't want to damage it and because the area round it is still very tender.
The underneath plaster fell off again on Friday. I had to use a small mirror to look because I don't bend that far. The wound was fully healed so I left it open to the air, and it's much easier to keep clean that way.
Another slight issue is the level of incontinence. After the optical urethreotomy, it was pretty bad, but now, particularly in the afternoon and evening when I am getting tired, it is almost free flow. I have used a DribbleStop (TM) clamp in the past to reduce pad usage, but I am reluctant to use it just now because of the tenderness. I suppose I could have gone back to the Coloplast and bag, but pig headedness stopped me regressing that far. The pads, particularly when nearly full, irritate the sore bits.
Roll on 2nd December and activation.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Mick had the Aus fitted a few years ago, I ordered a wrist band with the details on it, which I may add he forgets to wear!
He is very happy with the outcome of the op.
User
Just back from the follow-up visit to the consultant. Healing is good, apart from a small swelling in the abdominal wound. The pump unit is in the correct place but still does not have a discernable shape. That should emerge as the remaining swelling goes away. So all is as expected. Forward to 2nd December.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Another interim report.
The swelling has gone down markedly now and it is possible to make out the shape of the pump unit. However, the pump is very slippery and skips about all over the place; using it may take some practice. The soreness has not gone away, particularly from the area of the cuff, and is being aggravated by the rubbing of damp pads. Time to try Vaseline I think.
I have a medical alert bracelet (nothing exotic, just stretchy and bright red). It was quite a challenge to get the message onto the bracelet in two lines of 45-characters (including spaces). "Do not catheterise without..." takes up a lot of space to start with. The kit that accompanied the AUS included a small plastic tag with deactivation instructions that can be attached to a key ring.
Only another two and a bit weeks to activation. Part of me can't wait. Part of me is going *gulp*.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Tony
I am sure having a little metal Mickey hibernating in your nether regions is going to be sore initially! The fact that the swelling has gone down and that your medical team insisted on a longish gap before activation probably takes account of all of that.
I can just imagine after all the time you have waited and all the hoops you have had to go through, that you will have some mixed feelings about the big day. I know that many Men will be anxiously awaiting your update, post "switch on day" I think when the day comes you will be fine. I presume you get some sort of tuition in mastering the art of pump usage?
As with all things I expect that, given a little time, it will become second nature for you.
Sharing your experiences on here will be of benefit to so many so thanks for doing this.
I wish you all the very best for the big day
xx
Mo
User
Good luck Tony.
Hope it all goes well for you and that everything behaves as it should!!
Sandra
We can't control the winds - but we can adjust our sails |
User
It must be frustrating to have to wait, but you have waited so long. I hope the next 2 weeks fly by and all goes well and you really do have "dry runs" from then on.
atb
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
The AUS was activated this morning. On the basis of limited testing (walking up and down the hill near the hospital, travelling back from Birmingham and some local shopping).......
IT WORKS!!!!!
I have an enormous sense of relief. A more rational report will follow when I have had a few more days of experience.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Oh that's great news.
I bet you're really REALLY pleased !!
We can't control the winds - but we can adjust our sails |
User
OMG Tony that is wonderful news.
I bet you are nipping to the loo and having a little pee just to check it out. Then seeing how long you can wait until you have to go etc.
Bravo
Xxx
Mo
User
Tony
Great news, it has been a long road,although early days it sounds like it has been worth the wait.
Thanks Chris
User
Great news Tony, don't wear that button out on your new toy lol.
Roy
User
I hope this can bring long deserved relief to you.
All the very best with it
Chris
User
Wishing you every success with your new 'toy'!
Best Wishes
Luther
User
Some observations so far (four days on from activation).
There is a technique for operating the pump. It is very slippery, so one-handed operation is a bit hit and miss (mostly miss), so the other hand has to be used to grasp the pipes above the pump to stabilise it, then the lower section of the pump can be squeezed to release the cuff. I'll keep an eye on this to see if one-handed operation is feasible with experience; if not, then using a urinal in gents' toilets seems to be out unless there is one with particular privacy. (There is a Victorian example on the riverside in Chester with marvelous marble stalls.)
On occasions, usually connected with a bit of stress - e.g. lugging heavy things around, there can be a small amount of leakage so very light protection is still needed. However the leakage is very small, probably amounting to less than a teaspoonful yesterday when I was putting up and later taking down a PA system (including a heavy bass guitar amplifier) for a performance. Doing the same job before the AUS was activated would have soaked two or three heavyweight pads. No protection can lead to damp trousers because even a teaspoonful spreads to a surprising extent. On reflection, some slight leakage is probably a good safety valve to prevent back-up to the kidneys.
Having released the cuff, it seems to be best to empty the bladder reasonably quickly (say 30-45 seconds or so). If the cuff closes up while urine is still flowing (even a little bit), it can be quite painful as the bladder muscles fight against the closed urethra. I have to remember that bowel movements can trigger a bladder release....
There is a very slight, but satisfying gurgle as the cuff releases.
Am I happy with the AUS? Very.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Hi Tony
Really pleased for you
Barry
User
Sounds like great news after what must be 5 long years.
User
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
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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 08:54
| 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 23:41
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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
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
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. |
User
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
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
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
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
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
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
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
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
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
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!)
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Artificial Sphincter (AUS). Diary of experiences.