Incontinence question

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LenB
Regular Member


Date Joined Jul 2009
Total Posts : 102
   Posted 11/11/2009 9:18 AM (GMT -6)   
Hey Guys,
 
Just a quick question from an impatient leaker.  When the leaking finally stops, does it stop all of a sudden because the nerves have reconnected (virtually) to the brain< Or is it a gradual process?
 
Len
Age: 65
DX: 7/10/09
Gleason: 7
Biopsey: 2 chips with some cancer cells out of 30.
Robotic Surgery: 9/10/09
Cath out: 9/23/09
1st post op PSA: 10/20/09: <0.0
 
 


MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 11/11/2009 9:29 AM (GMT -6)   
Len,

In my case my last month consisted of days with a handful of drips here and there throughout the day, about a pad a day, the Dr told me to stop wearing the pads, the brain will now stop the drips. Sure enough it did it, never wore a pad again, 100% dry since
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 11/11/2009 9:42 AM (GMT -6)   
 MrGimpy - you're making me feel like I'm not crazy anymore idea
 
At my 3 month visit (i was doing two pads a day) my Surgeon told me he wanted me off the pads before the next visit in 3 months. He said it like I had a choice in the matter.
 
Two days later was a Saturday - I didn't wear a pad that day and have never looked back.
Age 54   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


engineer55
Regular Member


Date Joined May 2009
Total Posts : 121
   Posted 11/11/2009 10:26 AM (GMT -6)   
I think the brain is the key, the most important muscle to stop leaks is between the ears.  As long as your on pads your brain is telling your sphincter it is ok to  dribble.
 
I still would leak a bit when bending or lifting, or maybe a big sneeze.  it takes a while
Dx'ed 5/08 one core 2%  out of 12  3+3 gleason
DREs all negative
PSA was in the 3-4 range then jumped to 7
I have the enlarged prostate, on the order of 100cc.  After taking Avodart for 3 months  my
PSA was cut in half.
I did Active S for a year but concluded that I didn't want a life
of biopsies and Uro meetings.
DaVinci on 6/24/09  UCI Med Center  Dr Ahlering, long surgery based on size and location
Final was 5% one side all clear, but had a huge 90 grm prostate
Now we work on pee control, ok at night but sitting is a big problem.


MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 11/11/2009 10:58 AM (GMT -6)   
Engineer55 has it right

The Brain learns when to contract the muscles automatically, it will do it subconsciously, just like it learned to potty train you when your were a toddler.

The muscle works, thats not the issue, its getting it to work without you having to focus on doing it

A simple test, is this, if you are incontinent, start going to pee, then stop it, ok, now restart, now stop again. I venture to say you can stop completely. That proves the muscle is working, now the brain has to learn to do this on its own.
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 11/11/2009 11:02 AM (GMT -6)   
I have tried all sorts of experiments. Clamps, pads, no pads, yogurt cup, different levels of kegel, standing in front of a mirror. I'm still a leaker.
No level of kegeling will stop my flow. I am continent when I sit or when I am flat on my back. I try kegeling before I get up but there is a constant drip until I make it to the toilet when I can finally let the remainder fly. Maybe it's because I am only at 3.5 months.
I'm still waiting for my brain (or my sphincter) to figure it out.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/17 2 months: Still 3 pads per day.
10/31 14 weeks: Still 3 pads per day. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 11/11/2009 11:48 AM (GMT -6)   
I switched to light (women's) pads over a month ago. I now wear no pads at home but I am chicken to try when at work. A couple of weeks ago I realized that when I went to work I never carried a spare pad. I asked my doctor if he thought that maybe my brain was sending me a message. He just gave me an "are you kidding?" look and said; "Well..."

So the general answer is that you will be dry before you know it AND before you admit it. To this I would add that brother Jeff is an unfortunate exception. Nobody here has worked harder at incontinence than he has, so you can see that there are some individuals who have a rougher road.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 11/11/2009 12:40 PM (GMT -6)   
Jeff,

Walking really helped me out, I was only able to go 10-15minutes at first then built up to a few hours
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 11/11/2009 12:43 PM (GMT -6)   

And maybe brother Jeff has been working TOO hard.

Relax - take a chill pill and enjoy life for a few weeks.


CharlieTuneA
Regular Member


Date Joined Aug 2009
Total Posts : 37
   Posted 11/11/2009 1:13 PM (GMT -6)   
Len,
 
I agree with most of what everyone's said so far - it really is mind over bladder.
 
I'm about five months post-op, and am finally seeing signs of progress. Part of my slow pace is attributed to my having a catheter in for two of those months (surgical complications, which I won't go into here).
 
Last week I started going back to the gym. This was a source of considerable dread for me - what if I leaked on the floor of the locker room, what if someone saw me with the pad in my shorts, etc.
 
I'm finding that my fears were mostly groundless. When I was changing or in the shower, my mind just took over, and said, "Don't pee here." (I even tried when no one was looking.)
 
Another factor that hasn't been mentioned is fatigue. I find that if I'm especially tired out from not sleeping well or enough, I have more problems during the day. So rest is also key.
 
Good luck!
 
-Charlie
Age at diagnosis 59, PSA 1.4
Biopsy 12/08 12 cores, 6 positive
Gleason 3+3=6
CAT scan negative.

DaVinci surgery 6/16/09
After 10 days, cystogram revealed fistula
Catheter Removed 7/17/09
Fistula still evident week of 8/24
PSA 0.03
Catheter Reinserted 8/28/09
2nd catheter removed 9/28/09
 
Still minor evidence of fistula 10/21/09
Doctor recommends close monitoring, continuation of low residue diet, possible temporary colostomy if resurfaces.

Continence is a future goal. Progress slow.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 11/11/2009 5:20 PM (GMT -6)   
I don't disagree that there is some training here, but I think the brain thing may be overstated for many. If you are dry overnight, the brain thing is working. If you are dry sometimes, the brain thing is working.

There is a strength issue, which supposedly kegels help with, and there is a mechanical issue that some men never can get the shincter to close correctly 100 %.

There is also a time issue. When it is time, it works.

With the stress thing, even when it is time, I will probably still weer a pad so I can pick up heavy things.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


drmartin
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 11/11/2009 6:05 PM (GMT -6)   
Worried Guy said...
I have tried all sorts of experiments. Clamps, pads, no pads, yogurt cup, different levels of kegel, standing in front of a mirror. I'm still a leaker.
No level of kegeling will stop my flow. I am continent when I sit or when I am flat on my back. I try kegeling before I get up but there is a constant drip until I make it to the toilet when I can finally let the remainder fly. Maybe it's because I am only at 3.5 months.
I'm still waiting for my brain (or my sphincter) to figure it out.
Jeff


Jeff,

Before I had the Virtue Male Sling installed I had a full battery of Urodynamic tests done. the Final results showed that because of the size of my prostate at 120 gm's, it acted as the shutoff for my urinary tract which caused the sphincter muscle to atrophied and loose its ability to shutoff. The second opinion Dr. said no amount of kegles would restore its ability to function again and concurred on the recommendation of my Dr. to the installation of an artificial means of urinary control.

If you are still at the same level of incontinence after 6 months, You may want to ask your Dr. for a urodynamic evaluation to be done. My incontinence symptoms we're very similar to yours and remained unchanged for over 2 1/2 yrs.

Good Luck,

David
Age: 54

11/10/2006

PSA 10.2 - Discovered during Annual Physical with Family Doctor

Referred to Urologist Surgeon specialist

Free and total PSA - 10.9

Biopsy ( sent to John Hopkins pathology) - 2 of 16 positive on left and right apex of prostate

Left - GS 3+3=6, Right - GS 3+3=6

Davinci assisted laparoscopy radical prostatectomy on Apr. 17, 2007 -Complications due to extreme unusual size of prostate. Normal Prostate = 20 to 31 grams. Mine = 120 grams (not enlarged, but genetic growth large)

Nerves on right side spared.

All Lab's clear. No Cancer outside prostate

Cystogram Apr. 24 2007- Slight leakage at anastomosi negligible.

Catheter in for 1 week Removed Apr. 24, 2007

May 30th, First post-op PSA results...Non-Detectable!
Aug 18th, Second post-op PSA results...Non-Detectable!
Nov 8th, Third post-op PSA results...Non-Detectable!
April 17th, One year anniversary .010 Detected changed back to 3 month monitoring
Sept 17 2009 PSA < .010 non-detectable

Sept 22 2009:

Surgical implant of the Male Virtue Sling at Stanford Medical Urology center.


jerseycity
Regular Member


Date Joined Nov 2008
Total Posts : 123
   Posted 11/11/2009 6:24 PM (GMT -6)   
Hey Charlietuna, way to get back to the gym. Like I said, justs takes alittle extra precaution. The mind over matter is good for some.I noticed most of guys who were able to shut it off where in mid 50's. With more wear and tear on muscle and bladder this may not work as well in your 60's. I have been pad free at night and am still trying to get brain to shut it down.
 3-17- 8 went to Bruce Springsteen concert , great time
3-18-8 routine exam
3-19 doctor called said psa was elevated
what's a psa?
referred to Uro, had several more blood tests.
PSA steady at 4.75
biopsy  June 08 , 12 cores, 4 on left confirmed , right clear
gleason 3 + 3 T1c
research time.
decieded on open RP, Head of Uro  is my Doctor
Surgery done 10-1-8 by Dr See at Frodoret Hospital in Milwaukee
Cathater out 10-13 no problems
Post op,  organ confined, gleason up to 4 + 3, all clear margins
T2c 20% volume, very good outcome I feel
Incontinent and ED.  Time will tell, was told all nerves  saved.
back to work 11-5-8.
 3,6,9 month psa <0.04 one year <0.04
still use 1 pad per day
 
Walked thru the darkness on the edge of town.


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 11/11/2009 6:45 PM (GMT -6)   
There are two sphincters. One at the bladder neck, the internal spincter, gets traumatized big time during surgery, when they have to re-attach the urethra right there. It needs time to heal, often up to a year. The other is the external sphincter which can be strengthened through the Kegels, and is the one that you squeeze when you want to cut off the stream. And the big ole prostrate, which had some retention role, is now of course gone. The stories in these threads of people who regained continence long after six months, up to a year, are very inspirational to me and give me great hope.

Steve

coxjajb
Regular Member


Date Joined Nov 2008
Total Posts : 184
   Posted 11/11/2009 9:10 PM (GMT -6)   
I wore a pad home the day the cath. was removed. I wore a pad that day and to bed that night. I did not wear a pad after that. I was determined that I was NOT going to leak! I walked around puckered up so tight that a tractor would not have been able to pull a needle from my butt. I had maybe one or two drips a day in those first days. I would squeeze before a sneeze and while getting in or out of a car, while standing up or sitting down etc. Each week became easier and required less concentration. After a couple of months I didn't have to think about it at all. Like I told my doctor at my 90 day post op appointment when asked about incontinence; I can fart at Home Depot and not pee in my pants. My wife, however will still not go to Home Depot with me. turn
Age 51
Pre - Op PSA, 4.3
Gleason 3+4=7
Stage T1C
da Vinci Prostatectomy 8/1/08
No issues with incontinence since day 1 after catheter removal
Mild ED. Levitra works well for me
PSA 0.00 at one year post op

Post Edited (coxjajb) : 11/11/2009 8:14:03 PM (GMT-7)


Jake T
Regular Member


Date Joined Mar 2009
Total Posts : 44
   Posted 11/11/2009 11:19 PM (GMT -6)   
In my case, after 6 months & 1 week and still going through 1 pad a day i thought i would remain that way forever, but this Monday and Tuesday (my days off from work ) i went without a pad and could not believe how dry i was through out the day, about 12 hours later there was a wet spot about the size of a dime. I was watching my fluid intake.Today i went to work and carried a pad just in case but didn't need it. I guess i was ready but didn't know it, and not wearing a pad i try much harder to control the drips.


Age 56 > DRE 12/22/08 > PSA 3.4 on Jan 09 > PSA 3.8 on Feb 09 > Biopsy 3/9/09 3 out of 12 positive > Gleason 7 > cat scan neg > divinci robotic surgery 4/23/09 at Mount Sinai NY > Dr. Samadi > Chief Division of Robotics > both nerves spared > margins and nodes clear > catheter out in 7days 4/30/09 > 6th week post surgery PSA on 6/09/09 0.01 > incontinence (getting better) started bio feedback  8/23/09    1-pad a day>dry @ night>  5th month post surgery PSA on 9/22/09  0.01 

 

 

Post Edited (Jake T) : 11/11/2009 10:23:17 PM (GMT-7)


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 11/12/2009 5:08 AM (GMT -6)   
Hey drmartin,
My prostate was 56 grams, and I had restricted flow for at least 15 years before PCa. You know I'm an engineer and can measure anything. I tracked my volume, and "nozzle pressure" from the day the catheter came out and saw significant progress the first few weeks. But that leveled off and here I sit, leaking a constant 400 ml per day. I can probably figure out the size of the orifice leak. If I could just get my valve reaming tool up in there....
My Uro said I should wait until the 6 month point before deciding on a course of action. I will try to be patient. This issue is small when compared with the problems other brothers are carrying.

Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/17 2 months: Still 3 pads per day.
10/31 14 weeks: Still 3 pads per day. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.

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