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Old 08-15-2007, 01:17 PM   #1
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HowDew HB User
Question Non-nerve sparing and restoration of continence?

My husband is two weeks post-op having had robotic surgery on August 1. Unfortunately, due to the radical nature of his cancer, the surgery was non-nerve sparing. The catheter was just removed yesterday, and it's been only 24 hours without it, but he's already pretty frustrated with the leakage -- he has no control of his urine at this point. Nothing about his experience has been typical thus far, so I'm working hard at keeping him upbeat and focused on improving. He's doing his kegels -- or at least he tells me he is!!

Does anyone have any firsthand knowledge about what he might expect? In other words, have any of you had the non-nerve sparing procedure, and still been able to be successful at continence? If so, how many months on average could it take?

He will also have to undergo radiation in 6-12 months, so he's pretty convinced that his life is over. I can't/won't accept that! I would greatly appreciate any info that any of you can provide.

 
Old 08-15-2007, 02:20 PM   #2
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gpgscott HB User
Re: Non-nerve sparing and restoration of continence?

I am sorry that your husbands cancer was so advanced and my heart goes out to you both. Everything I have read indicates that urinary continence and 'nerve sparing' are exclusive of one another. The nerves control erection and the continence is a function of the spincter in the urethera and muscle tone. Restoration of continence varies widely from patient to patient. Sorry I can't be more helpful. Scott

 
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Old 08-15-2007, 04:36 PM   #3
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Specialdee HB User
Re: Non-nerve sparing and restoration of continence?

Hello, Howdew. Just wanted to share a little of my experiences after RRP four years ago. After having the catheter removed, I poured urine freely for a little over three weeks. I wore adult diapers during that period and felt pretty low about having to do so. The flow was much less at night than it was during the day. Finally, one great day, I actually felt the urge to urinate and it was real. From that point forward, continence improved. I gradually moved to pads, then to half-pads, and finally one day it occurred to me that I had forgotten to put one on, and had not leaked! That was about nine months after surgery. As far as "nerve sparing" goes, my surgeon proudly announced after surgery that he was able to "spare the nerves". Today, now 50 months later, I called my present uro to schedule a penile implant. So, all of those "nerve sparing" operations do not really result in a return to potency. Mine didn't. I've tried all the ED pills, Muse, shots, the vacuum pump, and now the time has come for me to admit that I've only one option left -- an implant. Tell your husband that, as Dr. Walsh's states in "Surviving Prostate Cancer", things will get better. Continue to be a loving, caring wife who listens and learns as much as possible in order to encourage him. Hope, faith and prayer are three unbeatable combinations. God is still in control.

 
Old 08-15-2007, 04:54 PM   #4
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jm2222 HB User
Re: Non-nerve sparing and restoration of continence?

Hi howdew,

As scott mentioned, the key to gaining continence is the Kegels and walking to get his pelvic muscle tone where it should be.

I've seen medical sites talk about an "internal" and "external" valve for the bladder. When we have surgery on the prostate so close to the bladder, it affects the "internal" or primary valve and we need to Kegels to get our "external" or secondary valve working properly.

I am doing better myself 15 days out of surgery, but can see that pads are in my future for some number of months. I especially have problems when I get up and sit back down. I can see a little progress over a period of time with the Kegels. It can be very frustrating, no question.

I wish you and your husband the best with future treatments.

Miracles are possible!

Jim

 
Old 08-15-2007, 05:01 PM   #5
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HowDew HB User
Re: Non-nerve sparing and restoration of continence?

Thanks, Scott. I read that removal of these nerves also affected the ability to control urination, and my husband's surgeon indicated that as well.

This has not been an easy situation for us. He is just 55, and in very good health, at least until he was diagnosed with pc in March. He's also in pretty good physical condition, which should help him.

Thanks, to you, too, Jim. I know it's early days, but he's really discouraged, and I think it's more about the pathology report, which was worse than either the surgeon or we anticipated.

Last edited by HowDew; 08-15-2007 at 05:10 PM.

 
Old 08-15-2007, 05:26 PM   #6
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Join Date: Jul 2007
Location: Plano, TX
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mauryfromplano HB User
Re: Non-nerve sparing and restoration of continence?

Hi There,

I am now 5 weeks post op and 4 weeks post catheter. I also feel like the continence issue is slow going. I am going to go to a Physical thereapist on Friday who does Bio-Feedback and I will report back here what my course of action is.

So many people have different options and they range from one extreme to the other.

Will keep you all in the loop.

Just hang in there; it takes time.

Maury

 
Old 08-15-2007, 05:47 PM   #7
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Join Date: Aug 2007
Location: Florida, USA
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HowDew HB User
Re: Non-nerve sparing and restoration of continence?

Quote:
Originally Posted by Specialdee View Post
Hello, Howdew. Just wanted to share a little of my experiences after RRP four years ago. After having the catheter removed, I poured urine freely for a little over three weeks. I wore adult diapers during that period and felt pretty low about having to do so. The flow was much less at night than it was during the day. Finally, one great day, I actually felt the urge to urinate and it was real. From that point forward, continence improved. I gradually moved to pads, then to half-pads, and finally one day it occurred to me that I had forgotten to put one on, and had not leaked! That was about nine months after surgery. As far as "nerve sparing" goes, my surgeon proudly announced after surgery that he was able to "spare the nerves". Today, now 50 months later, I called my present uro to schedule a penile implant. So, all of those "nerve sparing" operations do not really result in a return to potency. Mine didn't. I've tried all the ED pills, Muse, shots, the vacuum pump, and now the time has come for me to admit that I've only one option left -- an implant. Tell your husband that, as Dr. Walsh's states in "Surviving Prostate Cancer", things will get better. Continue to be a loving, caring wife who listens and learns as much as possible in order to encourage him. Hope, faith and prayer are three unbeatable combinations. God is still in control.
Thanks, specialdee. It's good to hear some positive outcomes in relation to continence. It's also good to hear that nerve-sparing isn't the end all, be all, either. Most of the information on the web only discusses nerve-sparing, and the great outcomes that result from it. So we were pretty disappointed to hear from the surgeon that he was unable to save any of the nerves because they were "sticky." Not what either of us wanted to hear for sure.

My husband had ED prior to the pc diagnosis -- we still don't know why. All of the things that have happened in the last two years that finally led to a pc diagnosis are probably best left to another post. There are so many things that I am very angry with our PCM about.

But at this point we must focus on getting rid of the cancer -- it is the most important thing. We've only been married for 18 years, and I'd like us to be able to look back fondly on our 50th anniversary!!

 
Old 08-15-2007, 08:27 PM   #8
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MoLu HB User
Re: Non-nerve sparing and restoration of continence?

HowDew-
I understand completely how you feel. My husband had robotic surgery July 13th and the dr was unable to save his nerves too. He is also suffering from total incontinence. This diaper situation is opening a whole other world to us we never knew about. You mention you are unhappy with your path report. Do you mind me asking what were the results? My husband was staged at T3a after the surgery but nodes and margins were clear. Mets is unkown at this time. Suspicious spots on ribs and sacrum but biposy was negative. He is 56 and was feeling fine until this has happened. I feel your pain. Very scary. This incontinence problem is getting old but he does feel good and has healed up well. Never was in very much pain. Our next step is talking to another dr regarding a possible clinical trial. We'll do that in a couple of weeks. He had his first PSA after surgery taken today so maybe tomorrow we'll know more. I know it's early for a PSA test but it is required for the clinical trial. Keep your fingers crossed. Good luck to you. If there is any comfort in knowing you are not alone I hopes this help.
Martha

 
Old 08-16-2007, 08:16 AM   #9
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HowDew HB User
Re: Non-nerve sparing and restoration of continence?

Quote:
Originally Posted by mauryfromplano View Post
Hi There,

I am now 5 weeks post op and 4 weeks post catheter. I also feel like the continence issue is slow going. I am going to go to a Physical thereapist on Friday who does Bio-Feedback and I will report back here what my course of action is.

So many people have different options and they range from one extreme to the other.

Will keep you all in the loop.

Just hang in there; it takes time.

Maury
Thanks for the encouragement, Maury. Hope the bio-feedback helps. I'd be very interested to know how that goes.

 
Old 08-16-2007, 12:57 PM   #10
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Join Date: Aug 2007
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HowDew HB User
Re: Non-nerve sparing and restoration of continence?

Quote:
Originally Posted by MoLu View Post
HowDew-
I understand completely how you feel. My husband had robotic surgery July 13th and the dr was unable to save his nerves too. He is also suffering from total incontinence. This diaper situation is opening a whole other world to us we never knew about. You mention you are unhappy with your path report. Do you mind me asking what were the results? My husband was staged at T3a after the surgery but nodes and margins were clear. Mets is unkown at this time. Suspicious spots on ribs and sacrum but biposy was negative. He is 56 and was feeling fine until this has happened. I feel your pain. Very scary. This incontinence problem is getting old but he does feel good and has healed up well. Never was in very much pain. Our next step is talking to another dr regarding a possible clinical trial. We'll do that in a couple of weeks. He had his first PSA after surgery taken today so maybe tomorrow we'll know more. I know it's early for a PSA test but it is required for the clinical trial. Keep your fingers crossed. Good luck to you. If there is any comfort in knowing you are not alone I hopes this help.
Martha
Hi Martha,
I too can relate to what you are going through -- this is surreal. My husband is also stage T3, with positive surgical margins, focal extra capsular extension, and a Gleason of 9. We had anticipated a better outcome than that. But his lymph nodes and seminal vesicles were clear, and no apparent Mets, which is a relief. Also, prior to surgery he had an abdominal CT and bone scan that were both clear, which was very good news. But his tumor was high grade, and extremely fast growing, so we feel really fortunate to have found Dr Parekattil, and that he scheduled the surgery within two weeks of the consult.

His PSA is scheduled for the first of September, so that will be the next hurdle. Then in 6 months to a year the doc wants to start radiation therapy. We haven't even considered any alternatives as yet, because first he has to get completely healed, and we're just beginning to come to grips with this. Let me know about the clinical trials you mentioned.

My husband had a great deal of pain post surgery, which we did not expect. That continued until lafter the JP drain was removed (last Thursday). Then on Tuesday they removed the catheter, which he was of course thrilled about! But the incontinence and the diapers are really getting him down. But I keep reminding him that he is still very early in the recovery process, and that things will improve. I base that mostly on the things I've been reading on this board. Thanks to you, and to everyone else who has been so candid in discussing this!

 
Old 08-19-2007, 09:05 PM   #11
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hailyjune HB User
Re: Non-nerve sparing and restoration of continence?

Hello, I was looking at this forum because my husband had the robotic surgery August 6. I think the first important thing for surgery patients to do is heal from the surgery. Your husband's weariness and your hope are both appropriate.

Maybe your husband could join you in just living the hour and finding something in that hour that is comforting to him. Comfort and/or pleasure can be as simple as a gentle hand massage, watching a favorite tv show or eating a small piece of really great chocolate. The idea being to just get a small, small step away from the intensity of fear and anxiety he is feeling. And you continue to do what offers you some comfort.

Please let me know how you both are doing.

 
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