I have not seen a thread lately about post-op incontinence. I thought it would be helpful for those who have had "very recent" surgery to see how things may progress in the months ahead.
Maybe give these guys some encouragement?
As for me, I'm just over 7 months post-op and I'm down to wearing one pad per day. Most of the time that one pad is virtually dry. I'm wondering if my experience is normal for those who decided to go with the da Vinci method?
I am almost three months post op and having issues with incontinence. I feel that I am improving slowly but it does get discouraging at times. I have no issues at night and now do not have to make the mad dash to the bathroom when I wake up in the morning. Daytime is more difficult and I am hoping to see some improvement here in the future. I still go through 4 pads during the day and none at night.
I am doing bio feedback and it has helped. I will have my third session in a week. It really shows how you well you are doing the kegels and the relaxing part is just as important as the work part. The schedule I follow now is 1 session in the morning with A. 10 1 second hold and release and the a series of 10 each held for 10 seconds. B. Exercises in the afternoon doing kegels with aids to stregthen other muscles as well and then repeat A in the early evening. It does seem to be helping. I would also tell you that the therapist wants these execercises done at 70% of full "squeeze power" to avoid total fatigue of the muscles.
Maury
Last edited by mauryfromplano; 09-21-2007 at 06:15 AM.
Having a great interest in this topic I read through previous threads and found it is common for continence to improve suddenly rather than gradually. This is what I've experienced:
I started measuring (I'm an engineer) my 'leakage' after the third week post-op. I weigh the used pads on an electronic balance and subtract the dry weight. I averaged 41 cc's per day (about three tablespoons), ranging from 20 to 68, for the next two weeks. I was using two half-pads per day. BTW, like many others I've never had a problem at night.
On Monday, 9/3 (5 weeks post-op), it suddenly dropped to about 20 cc's (4 teaspoons) or less. Nine days later it dropped to 6 cc's ranging from 5 to 9, where it is currently. I'm using one lightweight liner per day.
I expect one day soon it will drop suddenly to zero.
My husband had robotic surgery 7-13-07 and is still totally incontinent. Shows no signs yet of any control. Does his kegels and is back to work in a very physical job. Also is back to riding his bike and trying to stay fit. Unfortunately lost both his nerve bundles but margins were all clear. Yeah! I'm wondering how much of a factor in losing his nerves is this going to play in overcoming incontinence. Does anybody know if there is a link? If there is do you know his odds?
His stats are T3a 3+4 PSA 9.6
Molu
This must be very frustrating for your husband. However, it has still be a relatively short period of time since the surgery. I have seen cases where people gain continence quickly and then other cases when people, having lost hope, suddenly begin gaining control after many months or one year post-surgery.
You may wish to ask your doctor for a referral to physical therapy for incontinence, especially with a therapist who uses biofeedback to help the patient understand whether or not the Kegels are being done properly and also to measure the progress of strengthening the pelvic floor.
Unfortunately, I can't post links here, but I'm pretty sure you'll find some of the information you want by doing a web search.
There's another recent PCa thread where debbie35010 brought up a point about taking vitamin B6...
I responded to her post by saying that I'm on a prescription level strength of that vitamin which can't be purchased over-the-counter.
I'm thankful to debbie35010 for reminding us about the importance of nutrients in our diet and specifically for reminding us about vitamin B6.
The RX that my doctor prescribed for me is called "Folgard RX". I give this vitamin a lot of credit for helping me regain virtually all of my former functions that I enjoyed before my surgery.
Is it necessary that you use Folgard RX and not an over-the-counter generic?
I'm not sure. I use Folgard RX because my insurance plan covers it. My primary doctor probably gets some sort of incentive (kick-back) to keep prescribing it for me. Wouldn't surprise me!
As a seven year RRP veteran of the incontinence battle, some of my experience may be helpful to those of you just entering the fray. I’ve used every medication available (several times, some in double and triple doses), been trained with bio-feedback, collagen injected, been thru the complete battery of urodynamic tests twice and had scar tissue reamed out once. Several of these little sorties put me in the emergency ward but have not dried up the drips.
Personal observations:
1. None of the MD’s I’ve dealt with seem to think this is a major issue until at least a YEAR after the RRP. I don’t know if this is universally true...but it appears that way to me. The unspoken message is that we should be grateful the cancer is gone and of course...we are. But that still doesn’t get us dry.
2. Always try the simple things first. Do drugs – all of them at least once because one of them may actually help you. The best I ever got on any of them was to be dried up like a prune with major cramps and the weirdest body odor (impossible to describe) but don’t let my experience deter you.
3. Go for the biofeedback, because that too may help you. I know that I was doing the kegels wrong. Much of the old literature said starting and stopping your stream would teach your body how to control the right muscles. My therapist said that was WRONG and could actually damage me by the sudden pressure backup. The little electrodes for this procedure are just stuck on your belly and buns so you can watch the computer screen to see which muscles are the correct ones.
4. Use OBJECTIVE data as much as possible when describing your particular situation. The literature describes the condition as “stress”, “urge” or “mixed” which sounds pretty straightforward. From my experience it seems that “mixed” is just a way to say they just don’t know what’s causing it. The more specific you can be in describing your particular timing, volume, number of emissions, what you were doing at the time, etc. the better GUESS they can make as to what may cork the leak.
5. Pad count is meaningless without a measured weight/volume and occurrence numbers of urine loss. I know that a regular Depends Guard pad can hold well over 250 ml (almost 2 cups) of urine but if you sit down on it above 160 ml it’ll squish out and soak your pants. I always carry extra cloths and pads in my car for these inevitable occasions. For a week or so before my appointments with my MD’s I always generate a table showing how many pads a day, water weight/volume of each pad, number of emissions (I carry a small mechanical counter), number of night voids, etc. to give the OBJECTIVE information. Many days I get away with just 2 or 3 pads, but some days I’ll rip thru 5. Even on the lightest days I have to change them regularly for odor control. Stinky’s skew the pad counts and don’t contribute to the objective data.
I have an appointment tomorrow with yet another “specialist” to discuss getting an AUS installed. Told my Uro last week the water has reached my nose (pun intended, and I’m standing on my tippy toes) on this issue and I WANT IT FIXED so he wants me to do the expert reference dance just one more time. (It seems too often ... X is an unknown quantity and spurt is a drip under pressure). Time will tell.
When my husband saw his urologist last week, we asked about that issue because my husband has the occassional drip from stress. Extreme stress but enough that he'll wear a pad for confidence. Well, we asked how long till that stops... the answer... no one knows and it may never.
The urologist told us that if this is an issue, even after 6 months, they have a specialist that has developed a minor procedure that puts a "sling" on the urethra. The sling prevents stress incontinence.
Not sure if this is the procedure you are referring to or not or if your issue is bigger than this, sounds like it may be, but maybe checking with other doctors for their opinions would be helpful???
Our surgeon does recognize that yes, while grateful that the cancer is gone, quality of life after is also important.
Sorry you have had all of these problems with regard to incontinence.
I read another post of yours where you say, "Having lost one nerve bundle in the procedure I was in no rush to damage the remaining one after taking so long to recover."
Did your initial condition, before your RRP surgery, affect the nerve bundle to the extent that it could not be spared and needed to be removed? Was that nerve bundle cancerous?
Able5
Going in to the RRP I had no indication that anything was amiss. After the RRP my Uro told me that to get clear margins he had to take the left bundle.
debbie35010,
After dealing with the drips for so many years, I’ve had sufficient time to do extensive research on all of the possible fixes. The sling can be (generally) thought of as the fourth level option following keigles, medication and collagen bulking. It provides a mild pressure to the urethra to retard leaks. I considered it but have ruled it out because I cannot get a definitive answer as to whether I can sit on a bike seat ever again. In order to keep my leg lymphedema in check I ride and run a lot for an old geezer and will not give that up. I’m thinking the AUS or even the Interstim may be the direction I’m going.
Met with another specialist yesterday. Went over my complete history AGAIN! Slogged thru all the graphs and charts from my urodynamics tests done last year and the year before. My medical record is close to 8” thick and may require a hand truck to move it soon. Bottom line is each emission is only about 4 or 5 milliliters but when you have 80 to 100 of them a day it adds up to a lot of water ... and it ain’t going under no bridge either.
Result – set up to do a third urodynamic test with contrast x-rays. Depending on these results there’s a good chance I’ll be trying the Interstim per my Uro. The “compliance” aspect of my previous tests seem to point toward a nerve control issue (duh...I’ve been saying this for several years).
I’ll probably drop out of the boards again after I get thru this set of exercises in water management. Like most people, I was looking for posts of personal relevance to support my individual situation when I came back into these. For each of us this interest waxes and wanes over time as our conditions improve or deteriorate. I’ve found it helpful to read about other’s experiences, so will continue to post some of mine if there’s interest from the community.
Mudrunner-
You have an enormous wealth of information that you share so well thru your posts. You share so much actual detail and that is what I come to these boards to learn. I hope you keep posting and hope you find the answer to your inconitence. It has been way too long to be dealing with this. I wish you the best.
Martha
Why all the interest in his nerve bundle? I haven't heard any evidence that removing a nerve bundle affects incontinence.
In fact, my husband had a nerve bundle removed and he is 9 weeks post op and has almost zero issues regarding incontinence, only an occassional drip from stress, and already has erections back at 90% with the use of viagra. I'll take that for the piece of mind that the cancer is gone.
Path report on that bundle was A typical cells, not cancerous, yet. which is what we wanted to hear. Thats how it spreads quickly, via the nerves.
Long term report: Excellent chance of no reoccurrence. Negative margins, clear lymph nodes, seminal vesicles fine, PSA <0.03
Changing our lifestyle to support this report. Also using B6 and Omega-3, COQ10 and JuicePlus. Very active. Lots of fruit and veggies. Little meat.
According to Dr. Patrick C. Walsh (Urologist-in-Chief at Johns Hopkins)...
Sparing nerve bundles is very important with regard to incontinence and ED.
If you do a web search for "Patrick C. Walsh Defence of Nerve Sparing Surgery" you'll see a hit entitled Patrick C. Walsh.
If you go to this website you can read his letter defending the nerve sparing technique.
Also, there's an article in today's (9/27/2007) edition of The New York Times in the Health Guide section which says...
"Nerve-sparing techniques can help prevent incontinence, although even in experienced centers, 8% of patients will have some postoperative incontinence, and this rate is much higher (up to 50%) in many community medical centers."
I think this whole nerving sparing stuff must be overrated.
My father in law had no nerves spared. He had zero issues with incontinence from day one. Did have severe issues with ED.
My husband had very fast recovery after 8 weeks and almost good as new. One bundled, mostly removed. Nerve sparing surgery. Maybe the part removed was done in a special way, not sure. But 8 weeks is very fast recovery and his doctor is pleased but not surprised at the timing. He has high success rates.
People with both nerves spared.... guess no one told the nerves. See it on here all the time. Lots of issues. Incontinence and ED.
So, conclusion is.... It is not all about the nerves being spared, obviously. There is much more to it than that.
No idea, luck of the draw? Other issues with the remaining nerves? I don't know. But our surgeon did tell us not to worry, it only takes a piece of one to make it work ....
No idea, luck of the draw? Other issues with the remaining nerves? I don't know. But our surgeon did tell us not to worry, it only takes a piece of one to make it work ....
Thanks debbie;
No, not luck of the draw...
Cleveland Clinic!
They are #1 (or nearly) in this business and you happen to be fortunate enough to take advantage of their experts. Regretfully, the majority of PCa patients across this nation are getting their treatments in community medical centers using local urologists.
I happen to be one of those who had my surgery done at a community medical center. However, fortunately for me, my surgeon was a consulting surgeon who was using my procedure to train the local urologist in the community. So, to my delight, I had one of the best in the field of robotic LRP (Chief, Division of Robotics and Minimal Invasive Surgery Mount Sinai School of Medicine) doing my procedure.
Unfortunately, having the best surgeon in the field for your surgery is not the norm for most PCa patients.
I read through previous threads and found it is common for continence to improve suddenly rather than gradually. This is what I've experienced: 
and life is great! 
