Nigh on two years ago, I was referred to the local (NHS) urology department for consideration for an artificial sphincter to compensate for the declining effectiveness of my bulbar sling. Since then , there has been a stream of inefficiency and conflicting advice, culminating in a TWELVE month waiting list to see the consultant who does the AUS operations, and that is just a consultation, not the operation.
I'm afraid the camel's back has been broken by the last straw, and I am going to spend the kids' inheritances by going back (privately) to see the consultant who did my original LRP and sling implant. At least he is somebody I feel I can trust.
When we go through the hustings for the Welsh Assembly elections next year, any Labour candidates who think they have handled the Welsh NHS well had better keep clear of me.
More information on the AUS to follow with a bit of luck.
Edited by member 17 May 2015 at 13:44
| 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 and Barry too
it seems all so unjust, I genuinely feel for all men who suffer from this horrid disease. The physical and mental anguish it causes just does not seem to be fully understood. I am sure if it were more help would be readily available through the NHS.
I am posting to let you know that whilst I can never truly understand I do at least try and I genuinely care.
Best wishes
xx
Mo
Edited by member 17 May 2015 at 21:10
| Reason: Not specified
User
Thanks all. I'm off to Birmingham tomorrow afternoon to see the AUS specialist. I'll let you know how I get on. I'm also taking the opportunity to try to sort out the conflicting advice over Testosterone Replacement Therapy.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Back from the consultant in Birmingham. The show is on the road! An AUS is entirely feasible, I just have to have another set of urodynamic tests and an internal examination to check that there is nothing else that needs attention first. I'm waiting with slight trepidation for an estimate of the cost. Apparently the AUS itself will cost around £5,000 before consultant's fees, hospital charges etc. The AUS placement is a two-day job, relatively small operation on day 1, then catheter out and check flow on day 2. The AUS will be activated about eight weeks later when I am fully healed.
Also the consultant will be writing to my GP to say that, in view of my five years of unmeasurable PSA, he can see no reason to deny testosterone replacement therapy.
Suddenly the long dark tunnel looks a bit brighter.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Ouch indeed.
AUS in October then?
Hope it goes well.
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 luck Tony!
Hope all goes well
Luther
User
Hi Tony
All sounds good to gohttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif
Barry
User
Self catheterisation seems to have been successful as the stricture has not returned. Go / No Go for the AUS meeting with the consultant a week on Wednesday......
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Good news Tony
We need some of that
All the best for next week.
Xx
Mo
User
Tony
Brilliant news I really hope you get your date soon xx
All the very best
Mo
User
Hi Tony
Sounds like good news for you,
Hope all goes well
I have not heard a word, and I am not too bothered I think I will put up with a drippy willy and pads ,
What worried me was the fact that if I was to go into retention or the stricture returned I could not self catheter without the AUS being deactivated
User
Excellent news Tony, fingers crossed it all goes well.
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. |
Show Most Thanked Posts
User
Hi Tony,
I can fully understand where you are coming from on this matter, I had someone the other day say to me Oh prostate cancer that's not too bad, I just smiled they have no idea what the side effects are or how it effects us mentally,
I am going to let the my kids keep my money, I am so fed up with being poked about I have now decided just to go with the flow ,
my status at the moment totally incontinent it's either a conveen or a pad, sex what's that,
User
Hopefully, if you see a consultant privately he may be able to refer you back through the NHS. I hope so anyway.
Good luck with it Tony.
We can't control the winds - but we can adjust our sails |
User
Tony and Barry too
it seems all so unjust, I genuinely feel for all men who suffer from this horrid disease. The physical and mental anguish it causes just does not seem to be fully understood. I am sure if it were more help would be readily available through the NHS.
I am posting to let you know that whilst I can never truly understand I do at least try and I genuinely care.
Best wishes
xx
Mo
Edited by member 17 May 2015 at 21:10
| Reason: Not specified
User
Tony, Barry,
What can anyone say to make things better? Diddley.
It is so bad and unfortunate, and I am so sorry that you both have to resort to the solutions that you have chosen. Life is unfair. It still puzzles and confuses me that with the same basic bits, interfered with generally in the same way, there are so many different outcomes for men with PCa.
This weekend I met a fellow who had had a DaVinci and is incontinent, several pads a day. He is apparently the 1 in the 100 that bucks his surgeons trend of success of 100% success. The surgeon is currently 99% successful at UC and EF. But what id you are that 1%? What can I say having regained urinary control, albeit much later than many, but before or earlier than so many also.
The issue of funding is random and unfair. FWIW I have a load of pads spare, if of any use to anyone?
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
Thanks all. I'm off to Birmingham tomorrow afternoon to see the AUS specialist. I'll let you know how I get on. I'm also taking the opportunity to try to sort out the conflicting advice over Testosterone Replacement Therapy.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
User
Tony
Hope you hear what you wish from your specialist and you get all the solutions you need without too much SKIing.
Paul
Stay Calm And Carry On. |
User
God luck later today Tony.
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 luck Tony.
Hope it goes well for you.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
Hi tony I will be interested in how you get on with the private consultant re AUS. My husband went through all the waiting for apts etc got
to theatre only to be told when he came round that they were unable to carry out the procedure due to all the scar tissue present because
of ? surgery and radiotherapy treatment.
I never thought of seeking another opinion on this, it happened a few years ago. He now manages things with an external continence
device which is much preferable to using pads for those who are struggling with these.
very best wishes
Eileen
User
Back from the consultant in Birmingham. The show is on the road! An AUS is entirely feasible, I just have to have another set of urodynamic tests and an internal examination to check that there is nothing else that needs attention first. I'm waiting with slight trepidation for an estimate of the cost. Apparently the AUS itself will cost around £5,000 before consultant's fees, hospital charges etc. The AUS placement is a two-day job, relatively small operation on day 1, then catheter out and check flow on day 2. The AUS will be activated about eight weeks later when I am fully healed.
Also the consultant will be writing to my GP to say that, in view of my five years of unmeasurable PSA, he can see no reason to deny testosterone replacement therapy.
Suddenly the long dark tunnel looks a bit brighter.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Excellent news for you Tony.
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
Glad you've heard some good news. Hope it all works out for you.
Paul
Stay Calm And Carry On. |
User
Yay, Tony so pleased for you.
Yes,it's going to cost and that is so bloody unfair BUT you get your life back.
I bet your kids would say/have said "Go for it dad" !! I'm sure they would rather have a dad who isn't inconvenienced like you have been to a dad who leaves them a legacy that could have made him pretty much whole again had he used it.
Good luck.
We can't control the winds - but we can adjust our sails |
User
Tony
That is such good news, I am sure you were just joking a little about SKI -ing you go and spend whatever you need to make you feel better about living, I am certain your kids would agree.
I am looking forward to you posting after the procedure and telling us how much better things are then I will smile a nice big cheese happy smile for you.
Best wishes
Xx
Mo
User
Oh wow, I'm delighted to read this Tony. I know it costs but it's worth it to get some decent quality of life back.
Cheer
Allison
User
Tony,
would cable ties have worked? Did for me!
wishing you well. ;-)
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
Hi Tony,
Really glad to hear the good news,just sorry that you are having to pay for it,
I have got future appointments regarding AUS I will stay in touch
Barry
User
I was joking a bit about the kids' inheritances. The truth is even worse. The money will come out of the MGA purchase and restoration fund. *sigh* Actually, having looked at the price of candidate MGAs, I think the AUS might be a better investment.
Re: cable ties, good grief. Brought tears to my eyes.....
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Well, that's urodynamic test #1 out of the way. I wish I could see what it was supposed to prove. Uro : "Your flow isn't very good, you are straining a lot". Me: "It's a lot better when I don't have a lump of hosepipe rammed up inside me..."
Camera next week, and as my son pointed out, it's just as well cameras are a bit smaller these days.
I've had an estimate for the AUS operation. Made me twitch a bit.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Tony
Good to hear you are on with the AUS, amazing how the go pro cameras have taken off....only kidding although I do wonder with the various tubes, cameras, tools etc that are used if some could be a little less scary and invasive looking. We ladies have the joy of a speculum to look forward to every CS test which Ben Elton once described as having half a Ford Cortina parked in your nether regions. Seems a bit like medieval torture to me!!
Best wishes for the next stages
Xx
Mo
User
Flexible cystoscopy today. I was expecting some sort of comment on the state of my urinary system, but the camera would only go part way because I have a stricture. That has to be sorted before the AUS can be considered. I am trying to be level-headed and reasonable about this. If Betsi Cadwallader University Health Board had got off its backside and done something useful,
a) I would have found out about the stricture two years ago.
b) I would not have had to part with a lot of cash.
It's hardly surprising that the health board is now in "special measures".
Sorry, feeling like ********
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Tony I am so sorry to read about this latest up fcuk. I can understand why this would make you so angry.
Not much i can say other than I am thinking of you
Xx
Mo
User
Sorry to read this news Tony, is there any redress that you can take out against the Hospital?
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
Unbelievable, Tony.
I don't have a medical understanding of your problems, but it seems to me that there is a considerable amount of negligence in your treatmet.
As Dave suggests, there must be some redress here as you have unnecessarily forked out a goodly sum of cash.
Paul
Stay Calm And Carry On. |
User
Just to clarify, I have no issues with my current (private sector) experience. It was the previous lack of action by the NHS that has made me really angry and I feel for those men who don't have my option of swapping to the private sector. I don't think legal action will help - the health board does not have any money and any claim will just make the service worse for everybody else in the area.
We have Welsh Assembly elections next year, health is a big issue....
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Understand your viewpoint about their budget Tony. However, a claim might make things better for others? You do not need to seek money, just ensure that the failings are highlighted and those responsible called to account to make sure it does not happen to anyone else.
Anyway, let's hope that something can be done for you?
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
Hi Tony
I have seen your latest postings and the way forward now is whatever you wish to make it.
I put together a note on complaints and representations in 2011 to set out some contact points for raising concerns at various levels. You may find some options in the note of interest.
You can pick up the note from either of the two links below.
Prostate Cancer Online Community » Posts from the old forum » Prostate cancer practice guidelines » Complaints and representations etc
http://community.prostatecanceruk.org/posts/t7541-Complaints-and-representations-etc#post7541
The note is now on the George’s Bollocks 2 pca website.
I hope this is useful for you in some way.
Alan
User
Hi Alan
Many thanks for the reference. I'll do some digging on the procedures in Wales so they can be added to the guidelines.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Tony, before you spend all that money it might be worth a) reading this and b) contacting the trial?
This is an NHS trial called MASTER to compare the sling v AUS and would therefore be free???
https://www.mastertrial.co.uk
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks Lyn. Unfortunaely I am not elegible because I already have a sling, and as found recently, also have a stricture. However I will contact the Master team and see if they would like to add my experience with the sling to their research. Yes, it would have been nice to save the money.... *sigh*
At least someone more needy can have my place on the NHS waiting list.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Hi Tony,
I have an appointment on Tuesday 16th June in London, regarding a AUS I also have a stricture are they wasting my time and theirs.
User
My consultant wanted to get a "true" view of the level of my incontinence before proceding with the AUS operation. My flow was not as fast as it should have been so I had a flexible cystoscopy. However the camera couldn't even make it past the stricture to check the rest of my urinary system, so that has to be sorted before the AUS. The AUS is still on, but about three months down the road.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Thank s for that Tony, I think that's what they are doing to me ,
I will let you know what they say tomorrow
User
Hi Tony,
Sorry for the delay in posting,
I had a dialiation back in Jan this year, because of a stricture, after the small op I was left with a indwelling catheter which I had with withdrawn after three days, I was asked to pass a size 16 once a day to stabilize the stricture,I passed about five size 16 caths over a period of five days which I found very painful so I went back to a size twelve which I found more comfortable,
During the period Feb to April about 12 weeks I was in retention and was passing about 6/8 size 12s a day
Anyway the long and short is I am going back in this Wed for an op with the strict instructions to pass a size sixteen catheter for a period of three months to stablize the stricture with the view to have an AUS fitted some time this year
Any way good luck to all
User
Here we go. Operation to attack the stricture next Wednesday, 15th July.
Thanks for the comments, Barry. I'll report back on self catheterisation in due course.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Optical Urethrotomy carried out on Wednesday evening. Apparently the stricture was just above the sphincter, and it has now been relieved. Everything now works as it should, self catheterisation starts in two weeks or so and, provided nothing else goes wrong, I am on course for the AUS in the autumn.
Just need a little bit more sleep......
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Well glad that's out of the way for you.
Get a good night's sleep - you deserve it!!
We can't control the winds - but we can adjust our sails |
User
Some positive news for you Tony, not before time.
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
great news Tony
all the best for the AUS
xx
Mo
User
Well, here we go. Size 12 self-catheter today, size 14 tomorrow, then......size 16 (ouch). Once per day for two weeks then once per week until October.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Ouch indeed.
AUS in October then?
Hope it goes well.
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 luck Tony!
Hope all goes well
Luther
User
Hi Tony
All sounds good to gohttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif
Barry
User
Self catheterisation seems to have been successful as the stricture has not returned. Go / No Go for the AUS meeting with the consultant a week on Wednesday......
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Good news Tony
We need some of that
All the best for next week.
Xx
Mo
User
All systems go, now just waiting for a slot on the operating list for the AUS implant. With a bit of luck it should be before the end of the month. That should mean that activation will be before Christmas.
The stricture seems to have gone but I still have to keep the self catheterisation going for the time being. I hope practical experience is part of medical training so consultants can feel what a size 16 is like.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Tony
Brilliant news I really hope you get your date soon xx
All the very best
Mo
User
Hi Tony
Sounds like good news for you,
Hope all goes well
I have not heard a word, and I am not too bothered I think I will put up with a drippy willy and pads ,
What worried me was the fact that if I was to go into retention or the stricture returned I could not self catheter without the AUS being deactivated
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Incontinence? Goodbye to the kids' inheritances.