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Incontinence? Goodbye to the kids' inheritances.

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User
Posted 03 Jun 2015 at 16:18

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
Posted 03 Jun 2015 at 19:05
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
Posted 11 Jun 2015 at 21:05

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
Posted 11 Jun 2015 at 22:07
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
Posted 11 Jun 2015 at 22:31

Sorry to read this news Tony, is there any redress that you can take out against the Hospital?

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 11 Jun 2015 at 22:42

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
Posted 12 Jun 2015 at 03:05

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
Posted 12 Jun 2015 at 05:45

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

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 12 Jun 2015 at 07:39

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
Posted 12 Jun 2015 at 10:23

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
Posted 14 Jun 2015 at 10:05

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
Posted 14 Jun 2015 at 14:36

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
Posted 14 Jun 2015 at 21:13

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
Posted 14 Jun 2015 at 21:28

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
Posted 15 Jun 2015 at 19:35
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
Posted 21 Jun 2015 at 06:28

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
Posted 08 Jul 2015 at 17:21

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
Posted 16 Jul 2015 at 15:17

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
Posted 16 Jul 2015 at 18:16

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
Posted 16 Jul 2015 at 18:40

Some positive news for you Tony, not before time.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
 
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