Thanks for the responses. Yesterday's urologist appt went a bit better than expected. Talked about the incontinence for half the time with the dr before he told me that my PSA was zero- was glad to hear that but it is almost laughable that that news was almost an afterthought. Anyway his concern was that I felt that I had regressed so first we will try the therapy with biofeedback. Hopefully it will help. A question for DMarcus- how were you at 3 months? Did things improve between then and 5 months? Again, thanks to all for your response.
I’ve not visited this board in a long time. Only thought of it today because my Uro Doc just finished “looking up my name and address” and told me there’s still nothing there (had RRP in 2000), so I wasn’t surprised. PSA has been zero for many years. BUT – still doing between 2 and 5 pads a day. I’m way out on the end of the bell curve on this, if one is to believe what is so often posted.
Leaking 24/7 for over ten years SUCKS. It complicates life a lot. I always carry a change of cloths in my car and a spare pad in my pocket. A big wet patch on the back of one’s pants is not something that can be easily overlooked when in public situations, so I try my best to avoid getting to that point.
Coming back here after such a long absence, it’s interesting to note the posts are essentially the same (and naturally so). We leakers and dribblers want a fast fix. Please note that for most that can’t happen fast enough but for some it never will. Depressing, yes? I predict that time and experience will change some of that for some of the “newbies” here dealing with leaking.
I went thru many chemical and physical interventions to get dry over the years since my RRP. But little has changed…except my attitude toward the condition. Three years ago I went thru chemo for non-Hodgkin’s lymphoma. Leaking moved down a notch. Chemo didn’t hold so the next spring went thru radiation. The hair on the side of my head has never come back, but so far nHL still in remission. This spring I had a cardiac ablation for atrial fib (got tired of falling on the ground in a faint) which also seems to be holding.
This spring I’ll have to make a decision on my next medical adventure. Do I go after the incontinence once more (pushing for an interstim trial this time) or get the dupuytren’s contracture in my left hand fixed? Both are debilitating to some degree and annoying to a great degree.
Will knowing of my history help anyone cope with their own wetness? I don’t know. However, I do know that it sure helped me to be more patient with my own lack of progress in those early days by reading posts of others. I assure you that time and effort WILL fix most of you. Difficult as it can be in one’s current state (of leakage), your focus should be on the joy of living beyond what has taken the lives of many men before us. I know I’m happy as hell to still be here after so many accidents, illnesses and cancers despite the accumulation of annoyances and physical limitations.
Well, Mudrunner- you put everything into perspective just by recounting how many things can go wrong with a body. God bless you and have a Merry Christmas and Happy New Year and I hope your health improves. In any case, I'm now at 6+ months and for the past 2 weeks have been mostly dry, using a pad per day but it doesn't get all that wet (with a few exceptions due to lifting and reaching movements)- so hopefully, I've turned the corner on this "annoyance".
Some opinions contain more accuracy than other opinions. Much of what is posted both by professional and lay persons concerning incontinence after RRP is in fact just their opinion. Statistics drive much of this opinion soup but don’t actually tell you much about an individual person needing to haul diapers or pads around for years.
Few would deny that being in the best physical condition possible should make recovery from any medical procedure less problematic. Certainly, that has been my course of action before and after every one of my medical adventures. My rapid recovery from multiple surgeries, chemo, radiation, bla, bla has been noted by the veritable army of MD’s who’ve kept patching me up over the years.
In keeping with the above, I agree that Kegel’s MAY in some individuals assist both pre and post RRP in maintaining after surgery continence. But in agreement with rostco, IMHO, most people cannot do them correctly – unless they have gone thru a bio-feedback training exercise. I could not do them properly until completing many sessions with electrodes stuck to my neither regions while watching the Oscope traces.
HOWEVER…one can learn to vacuum up bowling balls with the correct muscle exercises and still remain incontinent…I speak from experience. The best hope for a successfully dry RRP is early detection of PC and then undergoing the newest surgical procedures by a very competent MD. I submit that if your post RRP results in ISD (intrinsic sphincter deficiency) from muscle and/or nerve damage, you can Kegel till the cows come home to no avail.
I’ve seen the recommendation to do the “Ks” many, many times over the years and have often wondered…if I did them correctly and it didn’t help…did they really help the dry guys or would they have been just as well off having a brew or two and not bothering…and how could they prove either way was more or less effective?
I'm posting here now because I’ve some physical down time from my latest medical adventure. After 12 years of 24/7 incontinence…I had a AUS (AMS800) implanted seven days ago and I’m still a bit mobility limited. It required two incisions, with the perineal one making chair sitting a bit uncomfortable, so if it appears I’m typing sideways…reclining while typing may be the reason. In five weeks it gets turned on…statistics say it’s the truly dry answer in about 90% of installs. Time will tell…I may opine on its value at a later date.
Well, Mudrunner, even though its the same forum, its good to see that you are still with us. Since my last post I have been up and down (dry and not-so-dry) with my incontinence and while it is still a slight bother, it isn't severe- still 1 pad a day, sometimes almost dry but a day like today leaking just over an ounce (yeah, I now weigh my Tena pads). Kegels? probably have done what seems like a million since surgery in June of '10, including 3 sessions of biofeedback training, which means that I MIGHT be doing them right- sort of the way rostco describes ... My urologist has mentioned doing a cystoscopy to see if there is scar tissue and/or doing a collagen injection, but I ain't to that point, yet. I keep imagining the results as being worse leakage or some other problem, so I can deal the current status for now.
In any case, keep us posted of your results and good luck and good health to you.
I’m still kinda’ stuck here in the house (sitting on a very soft cushion) and after re-reading your last post decided to add a bit more to this thread as I have as much time to type as my bottom end can tolerate.
You mentioned a cystoscopy and collagen injections. DISCLAMER: FIRST LET ME STATE…given my extensive on-the-receiving-end medical history I’m often asked what my recommendation is concerning specific procedures that others should or could undertake.. I seldom “recommend” any specific course of action but prefer to site my own experience and decision process and let the listener determine for themselves their own path.
I’ve had many cystoscopies including the recent multiple ones incorporated in my third urodynamics test required for getting the AUS. While not particularly enjoyable, the flexible ones are no big deal, but have found the ridged ones to be significantly less entertaining.
My third ridged one (used to remove scaring about two years after RRP) resulted in an emergency ward admission. Apparently, clots formed in my urethra from the roto-rooting and eventually completely blocked it up. This topped the list on my personal pain scale to date…worse than the kidney stone, worse than the hemorrhoidectomy, worse than the radiation for non-Hodgkins, worse than going thru a car windshield face first and a whole bunch of other stuff. A foley catheter had never actually felt good before, but that one was almost as good as sex. You can take it from me that when you gotta’ pee…you gotta’ pee. Had to keep the catheter in for a week to heal up on that one and much to my chagrin, the ream-out didn’t fix anything.
Several years later I had a different med group assure me that collagen injections would do the trick. Once again a ridged pipe, but with needles instead of a rotorooter. Another unpleasant rush to the ER. No joy on that experiment either. Even if it had worked (with or without the ER visit) this bulking method needs to be redone periodically. One failure with this method was more than enough for me.
I really expected my current attempt at getting dry would point to either a mesh sling or an interstim. After the battery of tests, my Uro Doc said she would only recommend the AUS because of the volume of leakage due to ISD (meaning the sphincter just won't close completely) was just too great. Swell, now I can add "wimpy sphincter" to my list of physical deficiencies. At least, so far, she's been kind enough to not point out some of my other more obvious shortcomings.
Will any of my experiences deter others from trying them? Perhaps…but it shouldn’t, because we are all different and respond differently to medical procedures. Many of my MD’s have remarked that I’ve had many “unusual” outcomes not typical of most…both good and bad. On the good side…I’m still upright and ambulatory (as soon as I can get off this pillow on my chair) and expect to soon be back on my 150 miles a week bike rides with my geezer pals and doing more mudruns at Camp Pendleton…but this time WITHOUT PEE PADS!
Well, my urology babe finally turned me on two days ago. I now have a functioning AMS 800 AUS and can be officially designated as a cyborg. Didn’t go well the first time she tried but (so far) this one’s a go. Still have an issue with the pump location being too far down causing discomfort and a bit of difficulty in operating it. Will go over that with her again in two weeks to determine if it's significant enough to warrant another operation for shortening the tubes.
Next big personal hurtle is to determine if I can get back on my bike. Bought a special split seat that (hopefully) won’t press on the cuff too much. I’ve been riding my recumbent trike with my geezer pals but it’s much like peddling a brick when going up hills. I’m picking up the new seat this afternoon so should know soon if it’s going to work.
For anyone contemplating an AUS, here’s my two days of experience so far. Mine doesn’t completely cut off urine flow. If I relax my remaining biological sphincter, a slow dribble occurs indicating the AUS is not completely closing down my urethra. With a single squeeze on the pump I get a normal flow for a few seconds. Multiple squeezes keeps the flow normal for about 15-20 seconds (more than enough time to empty completely). Initially, I was concerned that I’d continue to leak during normal activities because of the apparent non-complete closure. Especially since I’m still feeling much of the same leaking sensations as before the AUS. To test this, I moved to one of my wife’s very thin panty liners in place of the Depends Guards I’ve been using 24/7 for the last 12 years. To my surprise (so far) there’s been no wetness on the pads even though it feels internally like there should be.
Now that the cuff is normally inflated, it’s a very noticeable bulge in my perineum (hence the bike seat concern) and is very solid to the touch. When I operate the pump to deflate the cuff it actually makes a little squeaking sound. I think (possibly?) there may be some air in the system causing this. When operating the pump, I also get a feeling of abdominal vibration in the area where the tube going to the storage bulb is located. Once again; air bubbles? Additionally, when giving that final internal push to finish urinating, all the AUS parts expand. That is, both the cuff and the pump expand slightly and then drop back to their static inflation.
The biggest surprise so far has been the billing costs for getting this thing installed. My insurance company is in “negotiation” with the hospital concerning the $57,600 bill for my one day stay in a semi-private room (with a guy that kept me awake all night). This does not include my uro doc’s services and all the pre and post tests and procedures. I didn’t even get dinner…just a little bowl of jello!!! Sure hope this gets ironed out without me getting stuck in the middle.
Re: post radical prostatectomy and incontinence 
