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 12:44
| 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 20:10
| 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
Do all you can to help yourself, then make the best of your time. :-) |
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
Do all you can to help yourself, then make the best of your time. :-) |
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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 20:10
| 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
Do all you can to help yourself, then make the best of your time. :-) |
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
Do all you can to help yourself, then make the best of your time. :-) |
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
Do all you can to help yourself, then make the best of your time. :-) |
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
Do all you can to help yourself, then make the best of your time. :-) |
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. |
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Incontinence? Goodbye to the kids' inheritances.