I thought it best to start a new thread under one of the new topic headings.
So today was the big day for urodynamic testing to try to see if there is any visible reason for my ongoing leakage.
Let's get the rant out of the way first. I was ushered in to see the top consultant in the area. He asked (wait for it) when I had been for urodynamic testing. I replied that I understood that was why I was at the hospital today. It seems that my appointment for the tests is next month (but nobody told me that). I would like to have a serious chat with the dimwit who made the arrangements. The consultant was not too pleased either at having his time wasted. I am trying very hard not to get angry. After all, it is now only one year since my GP started the process off.
The consultant and I did have a chat though, and I regret the outcome does not look too hopeful. It is extremely unlikely that my bulbar sling can be tightened, and removal is not really an option after all this time because it will have been amalgamated with the surrounding tissue. The only possible alternative is an artificial sphincter and, because of the prior sling implant, there is a serious risk that the AUS will either do nothing, or bung up the works completely leading to permanent catheterisation. The AUS implant would be, apparently, a very fine balancing act. At the moment I am wondering whether to take this process any further or just give in and try to live with it.
For those of you still trying to combat post-operation incontinence, please DON'T take my experience as typical in any way. Keep trying whatever you can to make things better.
Sorry guys, just feel I am heading for the dark place until I can come to terms with the prognosis.
Tony
Edited by member 09 May 2014 at 15:42
| 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 Tony, I would be tempted to prepare well for the next appointment. Rig up a bag of water with a tube (perhaps an old catheter & bag) and hold it up in a position where the water stays put. Something akin to the shape of your washing machine out-hose would do, the upside-down U represents your sling. Then lower the end of the tube so that the water starts to flow. From your description, this is what you think is happening so if they don't understand your words, explain it in visuals instead? After they have mopped the floor, they may be more attentive.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi Tony,Sorry to hear the news only those who leak can really understand what its like,
I go through approx 6/8 pads a day but I would rather have this ,than self catheter
Good luck
Edited by member 10 May 2014 at 06:46
| Reason: Not specified
User
Hi
Been down to the UCL and booked in for a dialation on the 26th Dec,
then I will see what they suggest about an artificial splinter
Best wishs Barry
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User
I am really sorry to read this Tonypw. And I can not imagine what you have been going through, and are going through. How you remain so calm is amazing.
There is something wrong when we can do so much with science and inventions yet not resolve this particular issue.
Dave
User
Hi Tony
Urodynamic tests oh what fun, not!
Had my latest one last week and could swear the nurse operating the computer operating the flow into the bladder pushed the "speed up flow" button rather than the "stop flow. Jeez, I thought I was going to burst!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif
My minor discomfort is nothing compared to what you've had to put up with and I do hope the right solution is found for you soon.
I'm sure Flyboy will be along later to discuss your latest experience!
Please steer clear of the dark places.
Edited by member 09 May 2014 at 17:16
| Reason: Not specified
Roger |
User
Possibly less relevant after surgical interventions such as a sling ( I don't know ) but for incontinence said to be worth checking Magnesium level on your next blood test.
User
Hi Tony,Sorry to hear the news only those who leak can really understand what its like,
I go through approx 6/8 pads a day but I would rather have this ,than self catheter
Good luck
Edited by member 10 May 2014 at 06:46
| Reason: Not specified
User
Many thanks for your replies. Sorry about the wallow. I have now told myself to get on with life.
Tony
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
I am now approaching the end of my 3rd week since TWOC. I an not au fait with the procedures you have written about, but with inconsistent control, I feel frustrated but try to be positive. How you cope, I''ve no idea. 4 years of pads must be so frustrating. Hope you find a solution quickly.
Paul
Stay Calm And Carry On. |
User
Hi Paul
I think the way that I have coped so far has been through looking for solutions and hoping that one or more of them might just do the trick, although now it is beginning to look as though I just have to get my head round living with the status quo. Certainly the sling operation has made a significant difference; without it I am sure I would be still using the Coloplast leg bags. I opted for the sling rather than an artificial sphincter because I did have pretty good residual natural sphincter control. For the first six months or so after the sling implant, the results were dramatic as I hardly even needed a very light pad. After that, however, the sling did seem to slacken off and I am back to needing Tena Level 2.
The frustrating part is that I think I know exactly what is wrong. I don't have an over-active bladder and my pelvic floor is as tight as a bulldog clip. All I have is the equivalent of a leaky tap washer, I assume because of some distortion of my remaining sphincter and if I go outside the "envelope" of the sling (when reaching, bending, mowing the lawn for example) the distortion (and as a result, the leakage) gets worse. The issue is just trying to communicate this to medical staff - they seem to be too ready to hide behind the "oh, you must do your pelvic floor exercises" mantra. Been there, done it....
Today I received the appointment for urodynamic testing - 9th June....
Tony
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Hi Tony, I would be tempted to prepare well for the next appointment. Rig up a bag of water with a tube (perhaps an old catheter & bag) and hold it up in a position where the water stays put. Something akin to the shape of your washing machine out-hose would do, the upside-down U represents your sling. Then lower the end of the tube so that the water starts to flow. From your description, this is what you think is happening so if they don't understand your words, explain it in visuals instead? After they have mopped the floor, they may be more attentive.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
This is a very late addition to this particular thread as I have only just joined the on-line group.
Slings can be very useful in reducing incontinence - almost to zero for some, but by no means all patients. If there is virtually no bladder neck muscle left then incontinence can be virtually 100%- as it was in my case. Slings are not very successful in this situation. The bladder neck can be damaged by the original prostatectomy if the sphincter is naturally short, or sometimes by surgery to incise bladder neck obstruction caused by scar tissue.
It is certainly quite possible to implant an artificial sphincter (AMS 800) when a sling has already been placed and has become less than satisfactory. The sling is normally not removed but the sphincter needs to be placed a little lower down the urethra. The AUS may not be quit as good as if it were implanted into a 'virgin' patient.
All surgical procedures for incontinence after prostate surgery have best results where there is a 'quiet' bladder - ie the bladder is not irritable and inappropriately contracting as often is the case with symptoms of urgency and frequency after surgery. Radiotherapy can also make the tissues less elastic and reduce the effectiveness of slings and sphincters.
I had an AUS implanted 5 years ago for virtual total incontinence. Now 5 years later, I am still 96% continent. Have not regretted the decision I made.
Not every surgeon is trained to implant sphincters and a sling can potentially be a slightly easier procedure to perform. When being advised to have a sling, do ask the surgeon if he also does a sphincter and discuss the pros and cons. You can always ask for a second opinion from elsewhere if you want one.
User
Thanks Steve. It was a bit of an odd coincidence that you joined the thread when you did. I was just about to add the latest development in the saga.
First the urodynamic tests. I am still not quite sure what all that expensive machinery proved or did, other than to provide entertainment for the medical staff behind the console. In the end everything had to be disconnected then it was a case of "cough" and of course I leaked. Equals stress incontinence. Well there's a surprise.
Eventually I saw another consultant on Friday this week. I can excuse the delay because the Welsh health service is living on a shoestring at the moment. The outcome was as predicted - AUS or nothing, so I am going to see an AUS specialist to make the final decision. I may have to go over the border to Manchester, but hey ho. In the meantime, I have a project to work out the real statistical significance of the risks associated with the AUS.
On the mental side, my brain is getting better at dealing with the situation. Mind you I have been helped by a continuous flow of diversions, the latest of which was the arrival Evie May last Wednesday, our first granddaughter. She is absolutely gorgeous (the other four boys are pretty good too!!!).
Edited by member 25 Oct 2014 at 20:47
| Reason: Not specified
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Tony that's wonderful news - congratulations to you all xxx
Re the appointment - I am assuming you did not try the bag&hose party trick? Hopefully, the specialist in Manchester will be knowledgeable and inspire your confidence.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Ha. No, the mop and bucket needed afterwards did the trick....
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Hi Tony,
I see that you have got some movement on the leakage front, {good news}http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
I am still the same 8/10 pads a day,but an AUS is a problem for me as I have a stricture which I need to keep open,but I have a appoint in London to see a Proff who's an "expert" with two problems,I will keep you informed.
Regards Barryhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
User
Hi Barrie
It would be interesting to know who you are going to see and where in London. I suspect the options will very much depend on where the stricture is. If it is at the bladder neck, then it might be [possible to fully excise it, but thereby leaving the bladder neck wide open and thus rendering you totally incontinent. However, it would then mean that you could have an AUS sited around a part of the urethra lower down from the bladder neck.
My bladder neck was rendered wide open after my radical prostatectomy and I was virtually totally incontinent. An AUS a year or so later made me around 96% 'cured'. It continues to do so 5 years later. I wear a very thin pad 'just in case' and probably leak around 10mls or less per day.
The AUS totally revolutionised my life. If you are suitable - Go for it!!
If you want to talk in greater depth at some time, I'd be more than happy to do so.
Cheers
Steve Allen
User
Hi Steve,
Sorry i completely missed your reply,
I am going to the Uni/College Hospital London ,
To see +++++++++++++ I will PM you his name
Going on the 17th Dec
Regards Barry
User
Hi
Been down to the UCL and booked in for a dialation on the 26th Dec,
then I will see what they suggest about an artificial splinter
Best wishs Barry
User
Hi
just got out of the UCL ,had a dilation, left with a 16 french catheter , leave it in for about a week, then self cather every day with a 16 for three months ,then maybe an AUS,
Will stay in touch
Barry