Second sling working well

I had a second AdVance urethral sling procedure six weeks ago.

I'd had successful RRP 3.5 years ago, but had real problems with incontinence, and had the first AdVance sling put in 1.5 years ago. Things looked good for the first few weeks, but apparently something slipped and the sling stopped working, and I was back to my previous 1-2 pads/day. I'm guessing that I exercised too vigorously too quickly, when I should have taken the doc's advice to do absolutely nothing for six weeks.

So I went back for another round. The doc (same one who did the first one) said he got a "shocking amount of lift" when he did the procedure, indicating that the original sling must have slipped somehow. So I have been very, very careful not to do anything that might damage the surgeon's nice work. Now, six weeks later, I remain completely dry except for a few drops on occasion, when I twist the wrong way. Walking and exercising are just fine. I leak maybe once or twice a week, but only rarely enough to make me wish I'd worn a pad.

I can't say how nice it is to finally stop wearing pads!

For anyone interested, there's a good study on repeated sling procedures here: http://www.klinikum.uni-muenchen.de/Urologische-Klinik-und-Poliklinik/download/de/eurur/soljanik_2010.pdf . They report a 55-80% success rate for the first sling procedure, and a 75% success rate (completely or almost completely dry) after 16 months for a repeat procedure on folks where the first one didn't work.

I'd gotten advice from a couple of experts to give up on the sling and go with AUS, but based on my experience so far, I'm really glad I gave the sling another try.

Hi SB. One thing I learned through all this: kegels are great, but they won't solve UI if there's some other underlying issue. In my case, I was doing 100 kegels a day but still leaking pretty bad, and I was thinking "gee, if only I had stronger pelvic floor muscles I could beat this". Turns out that my problem wasn't weak muscles, but rather, my urethra being positioned so that the sphincter couldn't do the job. Once the sling moved the urethra, my pelvic floor muscles worked fine.

7 weeks is a very short time to see results, as I'm sure others will tell you. But if after a few months you don't see improvement, maybe a sling would help. My sling surgeon was Dr. Ronald Benoit at UPMC Mercy Hospital in Pittsburgh PA. Maybe not that far from you... Good luck!

Hi SB:

I had my surgery just a week or so after you and am in the same boat with minimal to no control. The good doctor did not even want to talk about incontinence just said do more kegels - up to 365 a day. Got very depressed too, worse yet it is not really something you can share with friends or family outside of this group. At one point I was wishing I never had the surgery even thought it brought my PSA down to nothing.

Then after reading a post maybe 10 days ago I made an appointment at local hospital that had a continence center - same place that did my surgery, who knew. They were were understanding and totally changed my kegel routine only 10 long ones 4 times a day with good separation between kegels. They also used a monitoring device to make sure my kegels were being done right. Then they put me through 20 minutes of electrical therapy where the pelvic floor muscles are stimulated on and off. Electrical probe goes up your backside but at this point in the journey I have lost all modesty and if it helps great.

Now have sessions scheduled every week and they claim a 95%+ success rate. Maybe just exercising would work too but at least it now feels like something is being done and I have someone to talk to about things outside this group. All I have read about slings say wait at least a year before considering it.

Maybe this will work for you too? Just passing along what I have learned so far. Good luck

I'm among the small percentage of men for whom Kegels, and even pelvic floor rehab, leads to scant improvement in our incontinence following a prostatectomy. At least we're led to believe we're in a very small class of men who continue to struggle a year or more after surgery despite diligent exercise to strengthen our pelvic floors. I sometimes wonder if our number isn't so small and our doctors are just a wee bit passive in helping us regain continence: "Go do your darn Kegels and stop complaining about your leaking!" Judging from the number of men who register complaints about their leaking on this forum, I think we are a bigger group that the stats we get from our doctors suggest. But maybe we're just a very focal group despite our small numbers.

Anyway, I did Kegels for a year and later went through almost a year of pelvic floor rehab and yet still leak about an average of 400ml per day (about 2 pads). Now I am going to lean more heavily on my urologist for the next step: evaluation of my situation to see if a sling or AUS may get me the rest of the way to continence. Based on my experience. I would urge all you leaking men to be more insistent with your doctors for remedies to get you dry. I think one year is about the maximum time any leaking guy should have to go before moving on to more aggressive remedies. Just my humble opinion.

Mike

SB,

You'll find the pelvic floor physical therapy helpful, I think. I was pretty discouraged (and leaky) going into the process, especially since I didn't seem to be improving and I couldn't see that the Kegels were accomplishing anything. Then after my therapist confirmed that I was doing my exercises right during the first couple of sessions, she would hook me up every week and her machine would tell me that I was doing better. She would have me do a set of exercises while her machine watched (via the sensor pads stuck to my butt) and she would look at the readout and say "You remember when we started your score was 1.2? Well not the machine says you are up to 2.6! A normal man scores around 5 so you are making real progress."

I did make progress too. Going into rehab I was unable to get up, walk across the room and pee. I would have emptied myself during the first three or four steps after I stood up. When finished with rehab I could walk a mile and still pee. I'd have a wet pad, to be sure, but I'd have something left. I leaked instead of merely draining.

I still leak a year later and I am talking to my urologist about getting a sling. So I am not that success story you are probably hoping to here more of here, but the rehab was worth doing. It made me feel less helpless.

Peter, I'm glad you got a significant improvement from the pelvic floor rehab. I didn't get much of an improvement from it. I was physically fit before my surgery and got back into shape 2-3 months after the operation. My pelvic floor wasn't in as good shape as the rest of me however; so the rehab did help. When the rehab ended, my physical therapist told me my pelvic floor was 4.5 out of 5; so that's not what was keeping me incontinent. So, like you, I'm going to ask my doctor if we can move to the next step: a sling or an AUS.

I'm not looking forward to another surgery and to being down for 6 weeks. Based on what I've read on this forum, I'll accept only the Advance sling (if I get a sling), which means taking it very easy for that period of time. I think getting the AUS would result in similar restrictions for healing. I don't look forward to the process but hope the results will be worth it.

Mike

Here is a post discussing a potential hazard of an effective, but tight sling.
Dangerous Energy Saving Measures
Enjoy,
J

I'll be there. I can bring my data. ;-)
Jeff

Mike,
Thanks for the kind words. I remember talking to my surgeon 3 months after surgery, he said he would like me to "be dry" if I needed radiation for recurrence. I had a 20% chance with 2 positive margins. I am still not dry and the PSA is starting to rise.

I called a surgeon this morning to meet with him this week to discuss having an Advance Sling installed. I discussed it briefly with him last August. He asked me if I could "tolerate it" as it was. At the time I said yes. Now I can't. It IS worst than ED issues.

I do not second guess my decision to have surgery. I still believe it was the best thing to do for ME! I guess I am just not one of the many lucky ones around here and am still dealing with the dribbles 18 months later.

I am happy for all those that are dry weeks or months after treatment. It is also good to know that there are many like me that are still fighting these SE's a year plus after treatment. Misery does love company.

Bill from Florida

Guys,

We are not alone. 2 out of 3 will be dry in 3 months. That means 1 in 3 will not. Of those, 2 out of 3 will be dry in a year. That means 1 guy in 9 will be walking with wet undies at a year.

The best candidates for a sling are:
1) Guys that leak less than 200 ml (about 7 oz) per day
2) Guys with some residual control. Meaning you can hold it for 3 to 5 seconds.

If you are thinking about a sling you need to start taking data now. Get a nice kitchen scale for your wife. Or better yet, tell her you heard it was Good For Men's Prostate Health. She'll run right out and buy it for you! (Then start using it when she is not in the room.) Weigh your pee pads so you know how much you leak. Subtract off the weight of a dry pad, of course.

As part of your evaluation the Uro will ask you do save all your pads for 24 or 48 hours. All he is going to do it weigh the bag. You might as well do it yourself and track your progress for more days. That way you will see if you are improving.

It is 2014. There is no reason for you to live with a damp crotch.

Now go out there and get that scale!
Jeff in NY

Jeff, inspired by your example, I started collecting data on my leakage in August 2012 and it has become a daily routine for me. You're right: this is the only way a man can tell whether or not he's making progress in reducing the dripping.

My uro used to ask me how many pads per day I was wearing but that seemed a very imprecise way of measuring the degree of the problem. After all, one can change a totally soaked pad or just a slightly damp pad and so the number of pads one goes through in a day can hide or exaggerate the amount one leaks. Almost a year after surgery, I didn't know whether I was improving or not and therefore started the daily data collection process.

The data helped me see the general trend. I had infrequent days where I leaked 800-1000ml and rare days when leaked only 200-300ml. On average, I leaked around 600ml per day at the beginning of the data gathering process and, with pelvic floor rehab, I reduced the leakage to about 400ml per day. I wasn't able to make any further progress and last October I began using a Cunningham (penis) clamp. That helped me reduce the leaking to under 100ml per day (now about 60ml), mostly because I don't wear the clamp when I sleep.

The clamp of course only disguises the extent of the dripping problem - it doesn't fix the problem. Nevertheless, I've continued to wear it because it does give me an improved quality of life and I don't spend so much on pads any longer. At the same time, I don't see the clamp as a permanent solution and hope that getting a sling or an AUS this year may get me back to total or near total dryness. I would be thrilled to drop the data collection!

Mike

Mike,
The data made all the difference. That was how I knew I was not progressing. I plotted it in excel, with forecasting a predictor for when it would reach 0 leak - dry. When the predicted dry date became "never", I decided to get a sling.

When recording my data I also had a number that represented activity: 1 - sedentary, 2 - reasonably active, and 3 - heavy work, splitting wood etc. That told me how much was related to stress incontinence vs, leakage.

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Warning!!! Do not read further if you want to continue thinking I am a reasonable person.
Still reading? You have been warned.
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I measured pressure, too. With pressure and leakage information I was able to calculate the effective orifice size of my leak. That was how I figured out I was missing some material. I went to a Uro specializing in incontinence. He scoped me out and said my sphincter was about half the normal length. All the kegels in the world would not "cure" me.

I love my sling!
Jeff

Thanks Peter, I thought they were the same.

Bill from Florida