CSN Login
Members Online: 12

Survey for you Dry (& Wet) Guys

Trew
Posts: 891
Joined: Jan 2010

I am wondering about something my new uro said the last time I saw him. He said there is a connection, somehow, between those all important nerves important to sexual function and the sphincter muscles that control the bladder and leakage.

For the Dry Guys: When you had surgery, where nerves on both sides spared?

For the wet guys: When you had surgery, did yu also have nerves removed?

Me? wet, and nerves removed on one side.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Trew -
Dry since cath removal - Nerves spared completely on one side, and estimated by Doc Spared 60% on the other side.

Larry

Hoosierdaddy's picture
Hoosierdaddy
Posts: 16
Joined: Mar 2010

DaVinci 12/21/09. 95% dry at catheter removal (100% overnight), essentially 100% a month later and since. Surgeon (Dr. Koch at IU-Indianapolis) said he spared the nerves on both sides, he didn't say a percentage.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I now remember being in the office at the same time you met Dr. Koch and signed up for your surgery - I was there Nov 17th at 4:30 pm - I then met with Dr. Hollensbe and decided to go with him but Koch was definitely my choice until Hollensbe. I am glad you have had good results with Koch...Hollensbe said, If I don't take it out, Koch should" We have some good people in this town!!

I was pad free 2-20-10 with my surgery on 12-29-09. I probably drink more beer than you...lol

Both my nerves were 100 percent spared and Dr. Hollensbe found two additional pudendal arteries in the disection plane above the prostate bed he had to cut around and save....He told my sweetheart she and I would both thank him for that...my surgery took about 4 hours as a result.

Randy in Indy

Hoosierdaddy's picture
Hoosierdaddy
Posts: 16
Joined: Mar 2010

I think you and I spoke briefly in the lobby. As I recall you seemed to have really done your homework. I had been having trouble getting candid specific recommendations about doctors and procedures; everybody just sold themselves and what they do.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

Both nerves spared. I'm wet to the point I had to have an AUS.

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

Dencil , 100% dry 1 wk after open surgery...nerves spared on one side and dr said the other side was kind of stringy..whatever that means....

jimbob51
Posts: 3
Joined: Aug 2006

I have been reading this discussion and a few guys have mentioned having an AUS. What is it and what for? Thanks

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

Jimbob: Scroll down to the thread "AUS 800 Artificial Urinary Sphincter". Read my post from April 28th. That will explain it in general. If you have specific questions, write back or you may want to start a new thread "AUS Questions".

Tom

harvs
Posts: 54
Joined: Jun 2003

Nerves spared.
Wet since catheter out
Did 6-8 pads a day plus briefs for overflow
Finally got AUS

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

Nerves spared. Surgery in January. Within about 4 weeks I was down to one pad a day. Dry overnight. Within the last few days, been flying solo without the pads. I have to watch how much and what I drink, but dry.

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

Both vascular nerve bundles were spared during my laparoscopy surgery to remove the prostate, November 2007. I still watch how much and what I drink, but dry.

Trew
Posts: 891
Joined: Jan 2010

So far the survey is inconclusive.
Hummmmmm.....

fathersson's picture
fathersson
Posts: 121
Joined: Nov 2009

Almost dry 4 wks after surgery.. Nerves spared..

BRONX52
Posts: 156
Joined: Apr 2010

BOTH NERVE BUNDLES SPARED AND DRY SINCE A COUPLE OF DAYS AFTER THE CATHETER CAME OUT. STILL DRY FOLLOWING 38 RADIATION TREATMENTS. COUNTING MY LUCKY STARS !!!

ezra99
Posts: 18
Joined: May 2010

Surgey late January. Nerves spared on one side with "wider cut" on other (what ever that means). Wore pullups for 3.5 months. Started with 6-8 a day and gradually down to 2-3 a day. Had problem with overflow incontinence and very weak stream which I was told is not usually an issue post surgery. I didn't have "squirts or dribbles" I had times when my bladder would just decide to start emptying. Would have probably a cup or more come out before I could stop it. Self cath 3-4 times a day for a week or so. Stream improved a great deal to where I was able to switch to pads. Stopped the self cath and able to empty bladder much better now. Currently at 1-2 pads a day unless I have too much caffiene. I'm pretty much dry but occasionally dribble so feel better with pad on. I'm going to try to go pad free on weekends when I'm hanging out at home. Hopefully will stay dry. It really got me down for awhile because I kept reading and hearing that other guys were dry from the day they got their cath out. I had times in that first three months that I thought I was going to have to live in a swimming pool for the rest of my life.

bobshell1956
Posts: 18
Joined: Dec 2009

All-

Nerves on both sides were spared but I'm still wet 6 weeks post surgery. I'm still stuck at 3 pads per day and little improvement since the catheter was removed. Doing lots of walking and kegels but it doesn't to appear to have any benefit for the leaking. Sexual function is also not going well. Pump and meds (cialis) have not helped at all.

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

My urologist/oncologist mentioned to me that it was necessary to get the incontinence under control before seeing any significant results regarding the ED.

You're only 6 weeks post-op. Give yourself a break! My wife reminded me of how anxious I was and how much I was doing too soon after the surgery. It's quite possible that you are exercising just a little too much... it takes time for the body to heal.

dav5942
Posts: 16
Joined: Feb 2010

No nerves spared, dry after catherer removal and still dry after 8 weeks.

Molulu
Posts: 1
Joined: Jun 2010

My husband lost both nerve bundles and the doctor had to take a wider than normal margin. He is wet using 1-2 pads a day if he's sitting at the computer but when he's at work 4-5. It has been 3 years now so it's pretty much the way it will be. We've had some discussion about the AUS but at the moment he's not interested in any more surgery.
Martha

lion1
Posts: 239
Joined: May 2007

Trew,

This was a great way to get some interesting and worthwhile feedback ---Great Job!!

All nerves spared--Incontinence since my Surgery 4 years ago on 6-6-6.

Still pursuing a fix---not taking any drastic steps.

This maybe a weak analogy, but living without pain has been fantastic and I say that because I ran into to some serious dental problems recently and the pain lasted for days and was excruciating until just recently. I bring this up, because my wife has cautioned me on doing anything drastic about my incontinence because we has read the stories of Sling and AUS recipients who have went through some serious pain which lingered for a long time. When she saw the crap I went through with my teeth, I agreed with her and said I will not bring anymore pain on myself voluntarily, because there's enough involuntary pain to go around.

If some day I get to the surgery point in my mind--then I'll roll the dice and just do it. I am really concerned about what I am reading about some Sling recipients.

Lion1

Trew
Posts: 891
Joined: Jan 2010

I am losing heart and courage over this leaking problem. I am keeping a diary- time of pad change, activity and percentage of pad wet. I am averaging about 6- 7 pads a day with some positive margins- my term with underwear being involved- we all understand positive margins, right? Just my play with a little humor. Th euro understood it, gave me a little smile.

Maybe some guys can tolerate 6- 7 pads a night a limited acitivity. The 6- 7 pads a day are with very lite activity, like sitting, moving aorund arund the house, standing, that kind of thing. A good brisk walk with close to saturate a pad in less than 2 hrs.

I am moving towards getting a AUS installed this year. I just don't know what else to do. I can't go on this way- for me it is just too much of a burden and brake on my daily activites.

this survey has been very informative, and helpful. I agree with that.

lion1
Posts: 239
Joined: May 2007

Trew,

I understand your frustration. There are days I just want to say screw it, and become more aggressive in what treatment I puruse, but then there's the other days when I say I could tolerate this a bit longer. Everyone is different, but the fact of the matter is, we are all human and could only take so much. For me my Doc says that my overactive bladder is the greater culbrit, no medicines worked, botox Injection #1 had no effect, like if I was Superman or something. Heck, I live in Fla and fly to Walter Reed for my treatment. My Doctor is outstanding, that's the only reason I do it, it has nothing to do with money. But, I don't know what the future holds, I just hope there's some other treatment that will be discovered to get me and others over this hump.

I, like many others remain positive and believe the cup is half full. Heck, today is my 4 yr anniversary cancer free--------that's Great!

Oh well to strength and determination as we all move forward in our challenges!!

Good Fortune my friend-----------Lion1

shane59's picture
shane59
Posts: 86
Joined: Jan 2010

surgery last december 1 month latter 2 pads a day then at 2 months 1 pad now I just wear for safty as mentioned I have been trialing the ultrathin ladys pads and getting some success , now you can laugh. but a word of warning make sure you secure the sticky tabs correctly or you can cause some discomfort with the short and curleys I found out first hand exsperiance my wife had a good laugh at my exspence. Wish you all the best and sucsess for the future .I hope and pray that I to will be clear in 4 years as well thanks Shane59

Trew
Posts: 891
Joined: Jan 2010

I lost almost 100% of pubic hair after radiation. Now, 6 months later it is just starting to grow back.

Hair is not my problem. But I did get a smile at your learning curve experience. LOL!

Trew
Posts: 891
Joined: Jan 2010

Since I was scoped I am ready for any radical fix ASAP. I have run out of patience. I see the uro again on wed RE difficulty with the self cath and maybe a stricture that has grown back- but I want to ask him about the earliest date possible for a AUS.

Enough is enough.

My cup isn't half full. In fact, it has been kicked over. That is how I see it. I can't get past the quailty of life issues. I never think, the cancer is gone (I'm not sure it is anyway) but I do often think about the quality of life lost and wonder if all this is worth it.

That is just how I see this. I was so active before, now cancer and wetting have turned my life around and I am measuring this "afterlife" every day not by what I have but bywhat I have lost. This is a very strange position for me to be in. I do need to be dry soon.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

As I mentioned, The AUS surgery is a bit rough, but once you begin to heal and they activate the thing, your life will begin anew. I've had mine three years. Last weekend, my wife and I drove to the beach for a free concert, watched the fireworks show, had dinner, and drove 90 minutes back home without a worry. Tuesday, a friend and I are leaving for a three week+ cross-country motorcycle trip. Other than packing my "liners" (I'll use one a day to catch dribbles), I have no other concerns. This is almost like having pc again. The toughest part is making the decision.

Trew
Posts: 891
Joined: Jan 2010

The would say the natural flow of things has pretty much made that decison for me.

Pun intended. :)

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network