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nerve sparing and continence

User
Posted 09 Mar 2015 at 20:50
Interesting article. My consultant explained to me over two years ago that there was a possible link between nerve sparing and continence

http://www.practiceupdate.com/c/22327/1/3/?elsca1=emc_enews_expert-insight&elsca2=email&elsca3=practiceupdate_uro&elsca4=urology&elsca5=newsletter&rid=NjE3Mzc2Njc0NTQS1&lid=10332481

User
Posted 10 Mar 2015 at 01:17

Morning Brian,

Thought I would add my experience into the mix for consideration. I had both nerve bundles spared, thank goodness, hopefully I will never have cause to regret that decision by the surgeon?

I did PFEs for the 2 weeks notice I had of the op, and I kept doing them for ages after, but they tired me out and did not seem to make any progress, so I quit them. My continence experience progressed slowly, and I would say I am dry now, have been for some months, so maybe dry since couple of months. I do not do them anymore.

EF - sometimes almost pre-op state. Not as long lasting, yet, but considering that there was nothing and now there is a substantial something for some considerable time, I am delighted. I consider myself very fortunate indeed considering my home circumstances before and after the time of the operation. If I had relied upon my partner for assistance during my "recovery window", I doubt I would be able to do anything. Fortunately I realised that she was not interested and therefore not long term and I had put in place development recuperative strategies to ensure my long term recovery. Thank goodness.

Seems there is no hard and fast rule, it all depends.

dave

Edited by member 10 Mar 2015 at 07:45  | Reason: Not specified

User
Posted 10 Mar 2015 at 20:03

I thought the study was interesting as my surgeon had discussed the very same thing with me when we were talking about possible side effects. He told me that removal of the nerve bundles will effect EF but also went on to discuss it could also effect continence, although he did say the jury was still out on that one. But I guess that is why the research and trials are so important.
This piece of research isn't suggesting that all incontinence is due to the nerves being removed. As we know there are many things that can cause incontinence. However, if they do establish a true correlation between removal and incontinence, and research will play a big part in that, it will hopefully inform future practice and decision making.

I also think it would be interesting to see any research that focuses on outcomes for men and how they are coping. Lyn mentioned Capitalman who has made no secret of his feelings about his side effects and how this has impacted on his life. I would envisage that the number of men who feel like Capitalman will be significant. As we all know this dreadful disease is unique to each and everyone of us as is the way we feel about it. I had the same list of priorities as Dave ie I told the surgeon to save my life whilst minimising side effects. But when making that decision I had no real idea what it would be like to be incontinent. I still don't.

I guess the point I am trying to make is that some men out there, without a doubt, will be regretting their decision as they struggle to cope with the side effects. Those feelings will be unique to them regardless of what others think or maybe say to them.

Ongoing research will hopefully improve the outcomes for us all now and in the future as treatment and after care improve as a result of research based practice.

Bri

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User
Posted 09 Mar 2015 at 22:33

Interesting, Brian. having read a number of threads of guys who've had surgery, it doesn't surprise me there may be a link.

Paul

Stay Calm And Carry On.
User
Posted 09 Mar 2015 at 22:42

I had nerve sparing and fully continent after 3 months.
Got a bladder neck stenosis but guess you can't have everything ;-)

Bri

User
Posted 09 Mar 2015 at 22:58

Close to be continent volume wise, but time wise still a way to go. Erections beginning to come back with Sildenafil. Link?

Stay Calm And Carry On.
User
Posted 09 Mar 2015 at 23:27
Bri

I was supposedly non nerve sparring and continent after 4 days, I say supposedly because I do get stirrings without any medication and have had reasonable erections with daily Sildenafil. Still a way to go.

Thanks Chris

User
Posted 09 Mar 2015 at 23:48
Hi Bri

As you know I had both nerve bundles removed in the attempt of a cure, and despite regular PFE,s still have a small problem with leakage. It may explain why for some of us the PFE exercises don't work as well or take longer. Some time ago when researching this subject I found a reference to nerve transplantation which utilised the nerves from the outer foot in the attempt to restore erections therefore increasing the blood flow to the penis which showed some success, but I don't know why it was not progressed.

Roy

User
Posted 10 Mar 2015 at 01:17

Morning Brian,

Thought I would add my experience into the mix for consideration. I had both nerve bundles spared, thank goodness, hopefully I will never have cause to regret that decision by the surgeon?

I did PFEs for the 2 weeks notice I had of the op, and I kept doing them for ages after, but they tired me out and did not seem to make any progress, so I quit them. My continence experience progressed slowly, and I would say I am dry now, have been for some months, so maybe dry since couple of months. I do not do them anymore.

EF - sometimes almost pre-op state. Not as long lasting, yet, but considering that there was nothing and now there is a substantial something for some considerable time, I am delighted. I consider myself very fortunate indeed considering my home circumstances before and after the time of the operation. If I had relied upon my partner for assistance during my "recovery window", I doubt I would be able to do anything. Fortunately I realised that she was not interested and therefore not long term and I had put in place development recuperative strategies to ensure my long term recovery. Thank goodness.

Seems there is no hard and fast rule, it all depends.

dave

Edited by member 10 Mar 2015 at 07:45  | Reason: Not specified

User
Posted 10 Mar 2015 at 07:25

Morning gents.

To add a little something else, I am now five months post op with nerve sparing on only the right side, left side removed as a precaution. I find that so long as I plan ahead, I can go pad free but find that when it's time to go I have to. I do find that I can only go for short periods without the loo though which I am working on with the incontenance physio team. Mishaps in terms of small leaks sometimes before, but oddly enough more common some 5-10 mins after I have been can happen, so I still have to make sure I have a pad with me depending on what I am doing.

ED is very hit and miss, tadalafil helps with flow but doesn't give an erection but my understanding is that it doesn't work like that. I did try Viagra without success. The only thing that does work for me is a pump, but to be honest I find it very uncomfortable as does my oh. Back to the GP tomorrow so will have more chats with him to see what's next.

I do still regularly do PFE's even though I don't think that there is anything wrong with the strength of the muscles. They don't seem to help that much with either the frequency with which I need to go, nor the little odd leaks either before or after. Hoping things will continue to improve over time.

Edited by member 10 Mar 2015 at 07:37  | Reason: Not specified

User
Posted 10 Mar 2015 at 08:32

Capitalman had nerve sparing from one of the Golden few but was left totally incontinent and impotent :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Mar 2015 at 10:13
I am quite sure this debate like some others will go on for some time, we see new members on here almost weekly facing a reall issue on making the right decision regarding treatment. I wish we had really accurate statistics and analysis of human vs robotic, open vs laparoscopic nerve sparing right or left Vs both etc. etc. However it seems we really just have a lot of clincal studies and reports sampling random numbers of men of all ages and fitness.

In every case there are wonderful success stories and regrettably some less favourable outcomes.

It does seem to be down to right place, right time, right combination of everything.

I think CB Dave has summed it up really well in his post. Recovery post surgery of both continence and EF are important but nothing is as important as living. Get that bit right and you have a shot at the others. Or as Roy has suggested you may have been given time during which new solutions to the other two come along. I hope they do for all those who still have issues and yet are fortunate enough no to be on the road that others face where there is no chance of Libido or EF returning.

xx

Mo

User
Posted 10 Mar 2015 at 11:09

Interesting...

Just to add my two penneth to the thread....

I had 50% nerve sparing surgery but still am using 2 / 3 pads a day almost 9 months post op depending on my activity levels and fluid intake..... 
I have been doing regular PFE's  6 weeks before surgery and for 9 months and counting after surgery...

Being a non medical person I can't quite see what difference sparing nerves would actually make to recovering continence?....

I was informed that because of the size of my tumour(s) the surgeon had made a 'wide cut ' in order to achieve clear surgical margins.


The nerve sparing was down to my surgeons judgement at the time of the op......his primary objective he told me was to ensure as far as possible that he got rid of all the cancer


He could not tell me how quickly I would regain full continence or if I ever would...

Maybe the results shown in the link suggest that there is more trauma caused to the external sphincter muscle when removing the nerve bundles to ensure removal of all the cancer than there would be with nerve sparing surgery?

 


User
Posted 10 Mar 2015 at 12:33

I was wondering how to respond without going off on one. I'll try to keep calm.

Here I am, four years down the line from LRP, where a substantial amount of nerve preservation was done, but still leaking like a sieve. However, I know exactly what the problem is, and it has nothing to do with nerves, doing or not doing PFEs, drinking, or not drinking red wine, or even the type of surgery. Because of my prior TURP, my surgeon (who is one of the top five in the country) had one hell of a job to join up what remained of my bladder neck to the new end of my urethra, leading to some distortion around the external sphincter. For a while, it looked as though it would seal despite the distortion, but no luck so far.

I'm afraid this study looks rather like someone deciding what they would like to find, and then looking for data to support the premise. It's a bit like the "Air is bad for you because all the people who breathe die eventually" study.

Honestly, there are so many variables affecting recovery from prostatectomy that only a really comprehensive study covering tens of thousands of men is likely to come up with any valid correlations. The lower urinary tract seems to be so delicately balanced that almost anything can upset it. As I have mentioned before, I see the situation as being similar to that of the twin carburettors on my Triumph Dolomite. Once they had gone out of adjustment from the factory setting, no amount of expert attention could ever keep them in tune for more than a month at a time.

There, rant over, Statisticians, please feel free to correct my premise.

And, now after two years or so, I'm still waiting to see a consultant about an AUS, but that's another story.

Tony

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

User
Posted 10 Mar 2015 at 15:33

Ive not posted for a while. 7 months post op, continence is bearable, nothing in the way of a returning Erection.

 

Very, Very depressing but ive got my head round it a bit and an appointment to see the nurse at the end of April to introduce me too injections.

 

If only Erections were some of the other guys biggest problems.  I feel im lucky to be looking like the cancer was fully removed.

Life's a Marathon. Run in peace.

User
Posted 10 Mar 2015 at 15:53

Carlos,

7 months post op is very early in the range of time that the "average" chap may take to regain control and recover function.

And in that time there may be a time where you get control back and then it relapses a bit. When you say continence is bearable how bearable is it? How many pads, level 1 or 2, a day? Some get it back very quickly, within weeks or even days, some months or years or well, eventually hopefully. Some sadly do not, but it seems they are in the minority.

Agree that this is a re;actively minor worry compared to what some men here are dealing with, but it is still significant to the person with the problem.

atb

dave

User
Posted 10 Mar 2015 at 20:03

I thought the study was interesting as my surgeon had discussed the very same thing with me when we were talking about possible side effects. He told me that removal of the nerve bundles will effect EF but also went on to discuss it could also effect continence, although he did say the jury was still out on that one. But I guess that is why the research and trials are so important.
This piece of research isn't suggesting that all incontinence is due to the nerves being removed. As we know there are many things that can cause incontinence. However, if they do establish a true correlation between removal and incontinence, and research will play a big part in that, it will hopefully inform future practice and decision making.

I also think it would be interesting to see any research that focuses on outcomes for men and how they are coping. Lyn mentioned Capitalman who has made no secret of his feelings about his side effects and how this has impacted on his life. I would envisage that the number of men who feel like Capitalman will be significant. As we all know this dreadful disease is unique to each and everyone of us as is the way we feel about it. I had the same list of priorities as Dave ie I told the surgeon to save my life whilst minimising side effects. But when making that decision I had no real idea what it would be like to be incontinent. I still don't.

I guess the point I am trying to make is that some men out there, without a doubt, will be regretting their decision as they struggle to cope with the side effects. Those feelings will be unique to them regardless of what others think or maybe say to them.

Ongoing research will hopefully improve the outcomes for us all now and in the future as treatment and after care improve as a result of research based practice.

Bri

User
Posted 10 Mar 2015 at 20:11

LYN - your inbox is full, can you clear out some space?

;-)

dave

User
Posted 10 Mar 2015 at 20:30

Back on topic, I can understand that removal of the nerve bundles will affect EF, no nerves = no EF as I was told.

As I understand things the issue of continence depends on the extent of the surgery, how far the "knife" had to go and how high up or deep? The cutting out of my prostate involved making quite an incision into the neck of where the urethra meets my bladder neck and I think that this may have contributed to my continence issues as the interference with the muscle at the neck may have/will have been affected?

That is the only reason why continence should be/could be affected as far as I am aware?

dave

User
Posted 10 Mar 2015 at 22:09

I suppose there's every chance that could have caused your problems Dave and certainly wouldn't dispute it as it's not an area of expertise for me.

your views are your views regarding incontinence :)...but i'll go with the surgeon who has done over a 1000 of these ops

Bri

User
Posted 10 Mar 2015 at 22:18
I had prostate removed about three months ago both nerve bundles saved and lymph nodes not removed I am still incontinent but get some feeling but on erections my worry is that they did not remove enough stuff as the biopsy after op has been upgraded to t3a Gleason 7 last PSA was 0.007.Malcolm
User
Posted 10 Mar 2015 at 22:25

Originally Posted by: Online Community Member

I suppose there's every chance that could have caused your problems Dave and certainly wouldn't dispute it as it's not an area of expertise for me.

your views are your views regarding incontinence :)...but i'll go with the surgeon who has done over a 1000 of these ops

Bri

 

I readily admit I have no expertise in this field.  Thankfully!

dave

User
Posted 10 Mar 2015 at 22:26
;-)...me neither

Bri

User
Posted 10 Mar 2015 at 22:46

Originally Posted by: Online Community Member

LYN - your inbox is full, can you clear out some space?

;-)

dave

 

Inbox and archive are already empty CB - I thought everyone had just stopped talking to me :-( 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Mar 2015 at 22:51

NOOOOOOO!

How could we?

Just wanted to make sure you are well?

ML

d

User
Posted 10 Mar 2015 at 23:13
Lyn

I sent you a PM yesterday do I have to start over ....again

xx

Mo

User
Posted 11 Mar 2015 at 01:45

Just checked - I have one message from Mo (thanks love and I will look at it xxx)

CB, thank you for being so thoughtful. Things are still tough but we are all getting there slowly xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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