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artificial sphincter or sling?

User
Posted 19 Mar 2016 at 16:27

15 months after my RP I still leak between 40 and 150 grammes a day (mainly depending on my activity level). I've been offered additional surgery to address this problem. One option is an artificial sphincter. I can get this under the NHS. In principle the other option is a sling. I'm told that currently this is not NICE approved since there is no robust evidence that it is effective. So I'm told that I cannot elect to have this on the NHS. But I'm a bit puzzled that other people have had this op. On the NHS? Are some health trusts not following NICE guidelines?

However, there is currently a trial being conducted to compare the two techniques and I've been offered a place on this. So I have three options:

1) Go for a sphincter on the NHS

2) Go for a sling, privately (I assume I can get this)

3) Go for the trial and only find out what has been done to me when I wake up from the anesthetic.

Tricky one!

The case for 1) is that it is a tried and tested method that has a high chance of working. On the downside it will mean that having a pee will henceforth be a fiddly process involving poking switches embedded in my scrotum. AND hanging about after a pee waiting for the sphincter to close (a minute or more). I'm a keen walker so nipping into the bushes won't be an option. LOL!

The case for 2) is that IF it works it won't have the above mentioned downsides. But it will cost and probably has a lower chance of success than 1), meaning another gruesome op to install a sphincter may be necessary.

The case for 3) is that since I torn between 1) and 2) I'll let someone else make the choice.

I'd be pleased to hear from others who have had to face this choice and what the outcome was.

Other general comments on my dilemma are also welcome. But, please, no comments to the effect that I ought to consider myself lucky not to be dying of prostate cancer. They spoil my day!

Roger

 

User
Posted 16 Apr 2018 at 21:31
Hi Louise

Yes, it’s working well. Have a look at the AUS diary of experiences - there are records of four or five there now. General experiences seem to be good... See Diary of experiences Note that URL is to the latest set of entries - there are several pages before that!

Tony

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

User
Posted 17 Apr 2018 at 13:35
Louise

Sorry to hear your husbands problems I can only add that I had one fitted 12 months ago and that it is a great success. I still use a pad as some tasks on the farm cause a little leakage but every day things are fine, I can call in the pub without concern even over do it occasionally!

All the best Malcolm

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User
Posted 20 Mar 2016 at 01:51

I'm sorry but I can't give you any advice on your dilemma but just wanted to say that I, for one, wouldn't dream of telling you that you're lucky.

I hope that whichever route you choose is successful so you can get back to enjoying life without worrying about leaks.

Best wishes

Rosy 

User
Posted 20 Mar 2016 at 08:06
Hi Roger

I've had both operations. The sling was effective for a while, but began to slacken off after about six months. An AUS was implanted about six months ago and, to date, is working well. Incidentally, neither operation was "gruesome"!! Both were in the private sector, the sling because I was still covered by medical insurance from work and the AUS because I was on what seemed like an infinitely long NHS waiting list.

My profile has the basic details. In addition, I kept a diary particularly of the AUS implant - here

Here, also, are a couple of other men's reactions with slings - Experience 1 and Experience 2

Obviously, as I am not medically qualified, I can't offer advice, but I hope you will find the above useful. Perhaps a second opinion would help (privately = a fairly small investment).

Tony

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

User
Posted 23 Mar 2016 at 11:38

Thanks Rosy and Tony

Roger

User
Posted 19 Apr 2016 at 18:35

UPDATE. I've now had the urodynamics tests and it seems I have both sphincter weakness and an overactive bladder.

As previously posted it seems that I cannot have the male sling option on the NHS. My consultant tells me that he is not able to do this privately whilst the trial is in operation! Say bang goes one option. He also tells me this area of surgery is rather specialised and that most surgeons experienced in fitting slings will also be in the trial and so will not offer a sling privately.

So unless I risk an operation by a non-expert (which seems unwise) it seems I'm snookered :(

 

Roger

User
Posted 19 Apr 2016 at 20:46

I don't think a sling fitted by a non-expert is a good idea at all. It is vital to get the tension correct and that needs a lot of training.

BTW, my AUS continues to work well.

Tony

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

User
Posted 11 May 2016 at 13:03
I'm watching this post because my OH is in a similar position as you. He's decided to leave the referral six months and see if his very slow progress continues
User
Posted 22 Jun 2016 at 22:53

I had the AUS fitted in 2013 on the NHS. best thing I ever did.

Poking around with switches is lots better than changing pads, or emptying collection bags. And there's no reason why you can't nip into the bushes.

Edited by member 23 Jun 2016 at 08:58  | Reason: Not specified

User
Posted 16 Apr 2018 at 20:40
So, lots has happened since this post. My oh had just got to a stage where he could live with it (one pad a day) when his count started to rise. 12 months ago he had a course of radiotherapy which, while he was going through it, improved his bladder incontinence.

Sadly, 12 months on its worse than it ever was and showing no signs of improvement. He has had bladder tests, and we have an appointment with the urologist next month. He has suggested AUS.

Tony- or anyone else, - is yours still working well? Any side effects?

Thanks,

Louise

User
Posted 16 Apr 2018 at 21:31
Hi Louise

Yes, it’s working well. Have a look at the AUS diary of experiences - there are records of four or five there now. General experiences seem to be good... See Diary of experiences Note that URL is to the latest set of entries - there are several pages before that!

Tony

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

User
Posted 17 Apr 2018 at 13:35
Louise

Sorry to hear your husbands problems I can only add that I had one fitted 12 months ago and that it is a great success. I still use a pad as some tasks on the farm cause a little leakage but every day things are fine, I can call in the pub without concern even over do it occasionally!

All the best Malcolm

User
Posted 17 Apr 2018 at 14:32
Thanks tony, I shall look at the latest.

Malcolm - mines a farmer too! The surgeon thinks it hasn't helped!!

User
Posted 04 May 2018 at 22:24

Mine is still working after 5 years. I can still get small leakages, if I leave it too long, or sometimes if I sit on something awkward and squeeze the pipe work a bit. But I have absolutely no regrets.

User
Posted 12 May 2018 at 19:37
Update - make sling still working after nearly two years in place. It's not perfect as i get occasional leakes but i can live a close approximation to a normal life.
 
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