Tallman's journey to Coloplast Male Sling

Glad this is helping you guys. I followed KWs journey with Advance Sling followed by AUS and found all those posts very helpful in not only my decisions but also in managing my condition...including my mind.
In that spirit I am going to ask Rapids this question on the forum instead of a private email.



Rapids,

I am still experiencing a fair amount of soreness at the base of the scrotum and/or near the scrotum. At first I thought it was all in the scrotum since I still have a little swelling an numbness there. I am now thinking that this is so close to the incision where the sling was inserted and where the arms extend that this soreness is really near the sling itself. The discomfort is especially when sitting and pressure is on that area. This is also where I suspect some of the leaking is occuring since that pressure is manifested right on the area where the sling is at.

My question is did you have this sensitivity/soreness at three weeks and do you still have it at three months and if so to what degree. It's so hard to remember time lines in this process that I find logging my daily/weekly condition is not only helpful to me in talking to the doctor but also would be very helpful to any others that have sling surgery and want to know what to expect.



BTW, I got a response from Dr. Nitti yesterday. I asked if where I am at now is what I should expect or could I still see some improvement with more healing. His reply was that I will most likely plateau at this point as far as the leaking was concerned.

Hi guys,

Sorry I have been absent a few days but there was not much new to report. Yesterday was my four week anniversary of sling surgery and visit to my local Uro for a checkup.

The news is not very good. Although there is some improvement I feel like I have slipped back a bit.

I continue to be dry at night/sleeping and wear no protection. Have to be careful to fully drain or I will get some residual drops because I am still up every hour or two because urge wakes me up. Uro can't explain why. Perhaps it has become habit. Mornings I can get by on one pad and control is pretty good doing my office job. Afternoon's seem to regress and control is not good when I am up and about. Today I filled two pads in the afternoon. Uro says it is common to have less control in pm as some muscle fatigue may set in.

She wants me to try Imaprimine, a drug I tried early on that did no good. It is a drug for depression that is used off label to relax bladder. It gave me headaches before so I will try a low 25 mg dose before bed and then may move to another first thing in the am.

The better news is that pain continues to subside and have only a very little numbness/soreness in lower scrotum and near the incision point. It's still uncomfortable setting for very long unless on very cushioned chair.

I will update again in about a week or when I see any change. Of course will be glad to respond to questions.

If this trend continues I may be a candidate for the famous AUS somewhere down the road.

Also, Rapids seems to continue doing well, much better than me. We have similar history so go figure. A lot of this is a crap shoot and I am still glad I am giving this a shot first even though I am a bit discouraged at this point....I can still lead a normal life, just not quite what I was hoping for. Stay tuned!

Five Weeks following Virtue Surgery:

Since today is my five week anniversary of the Virtue surgery thought I would give post an update of my progress. Pain is basically all gone, only a very slight numbness of scrotum but for all practical pain free. I am still leaking 2-3 men's moderate pads per day. I make it through all morning at work or when traveling and usually change about noon and some days it is no more that 1/3-1/2 full. Afternoons I usually change to the second pad before leaving work and that pad is pretty full. Evenings at home or in hotel room I wear only a very light panty liner to catch post urinating dripping. If I am out for dinner with some extended activity I may fill another pad at least partially. Nights I go without anything and stay dry but still wake about every two hours to urinate depending on fluid intake. If I have a couple of glasses of wine I may get up more often. There seems to be no answer for this. The ultrasound showed that I was emptying completely.

 

I had the follow up appointment with my local Uro last week. The incisions have healed fine. She prescribed Imipram HCL 25 mg before bed daily for one week and another 25 mg second week (starting tomorrow) if side effects are not a problem. When I tried it after RP it caused headaches and it did not help. I sense that it may be helping somewhat as I seem to have a little more control during the day. I am hopeful that I can improve on this by being more aware to hold when standing. We did discuss trying collagen injections at some point in the future.

 

Because of this degree of leaking I am considering using a clamp again either at work, when doing physical activity or times when it is inconvenient to change pads. Is this a bad idea? Could it give me a false sense of security and make me less conscious of controlling things myself if I use the clamp too much. It seems I have heard on this forum that some doctors discourage the use of clamps for this reason.

 

My feelings are still the same. Although I had hoped for better results I am still satisfied with my decision to try the sling first rather than the AUS. I know I was somewhat "playing the odds" and I guess the odds are not turning out in my favor to the degree I had hoped.....but, this is more managable than my constant leaking before surgery. If I would have been able to predict this result I would probably have gone straigt to the AUS.

Ray,

Thanks and glad to help.

Bottom line is how much of a gambler are you. That said, since you followed this thread you know that I was a full leaker during the day and only control was  if sitting and when sleeping and waking I could usually get to the bathroom in time. It's just so hard to compare individual situations.

If you have not gone through the FUDs and Urodynamics testing with your Uro you certainly should do that and see what is recommended. I did the pad weight test and it showed 219 grams. The doctor that did the surgery told me he thought this was not likely representative when I told him about my persistent leakage.

Even though I am satisfied with my decision, if I would have been able to predict this less that positive outcome with 80% I would have gone for the AUS instead. We all tend to want to think positive and dread the thought of the AUS but based on my research it has a much higher (honest) probability of success. I have not done enough research on AUS but as far as I know there is only one that is the "gold standard" and that is the one by American Medical Systems= AMS AUS.

At 4 1/2 months you probably need some more time to see where you end up. I went a full year before deciding with my Uro that I would not likely improve further. Also, I have not had an erection since RP and you seem Ok in that department. perhaps you have less nerve damage than me.

If you have not read any of the posts on this thread or the one (called virtue sling) started by Rapids about his Virtue experience I suggest you do. He has had excellent success with the same doctor that did mine. We thought we had similar conditions before surgery but have had different outcomes.

Also, some of you will remember BigBadJohn who has been on the forum and had to have his Virtue sling removed (because of pain). He had the AdVance sling installed and he says it seems to be working fine for him.

Hey Tallguy, Rapids, Ray and fellow leakers,

I just left the PT office today with a bit of bad news. She considered all the kegels I have been doing, all the tricks and modifications I have made to my lifestyle, all the pee pad optimization techniques, all the careful walking, sitting, sleeping, etc. and the fact that I am still leaking at 280 ml /day at 7 1/2 months post RP. Sadly, in her opinion, there is very little chance I will get better without some intervention. I have been plotting my data daily and see that improvements have plateaued out with no end in sight. (My excel forecast line no longer crosses the x axis.- not even in 2012)
She will be calling my Uro today and discussing the next steps including: collagen injections or sling or ?
As I feared (but expected) I most likely will be walking down a similar path as you.
I'm not happy about it but I know I won't be the first nor the last. At least the walking path is on the top side of the snow. That is a plus.
Jeff (the leaky one)

Dear leaky one, my friend... Seriously Jeff, I am sorry you are in this stage, but you can be comforted in knowing you've got a good bunch of guys to mentor you with this new development. Maybe you can think about getting a twofer, penile implant and continence device combo...Once in, twice served...

Thank you for sharing your experiences since having the Virtue procedure in January. Seeking relief from incontinence can be a taxing journey, and the appropriate course of treatment is different for everyone. You mentioned you feel satisfied with your decision to try Virtue rather than AUS, which is not uncommon among men facing similar incontinence issues. In fact, a recent study showed 92% of patients chose a male sling over AUS when given a choice by their urologist. This isn’t a surprise considering the sling procedure is much less invasive and potentially has a faster recovery time than AUS procedures. Also, you can opt for AUS after trying the sling procedure first. It would be interesting to hear from others who made the same decision you did, as well as those who opted for AUS before trying the male sling, and what prompted them to make the decisions they did.

To VirtueSling ,

If in fact you are not paid by Virtue , as the moderator suspected, you may want to check  my previous posts. I've had excellent results from my Virtue surgery 4 months ago.

Rapids

Here is an update I sent to Dr. this week:

At the nine week point here is an update on the result of Virtue sling surgery. For all practical purposes I am back to where I was before the surgery. I use 2-3 pads during the day doing my normal activity either at the office or on weekends shopping or working outside. Another pad at night before bed depending on activity and liquid intake. I can probably say I have a little more control after sitting and can usually make it to urinate if I go immediately. Otherwise I will pretty much leak completely empty if up and about.

I still don't regret that I tried sling surgery even though it ended up being a wasted effort. It was an expensive thing to do. Of course my insurance covered the majority of the cost. If I would have had pay the full cost myself I now wonder if I would have done it.

Unfortunately there are not enough data for us to be able to predict with certainty the outcome of this type of surgery. Looking back I can now admit to myself that some of the information on this forum and even advice I received from Dr. Nitti (I asked him if it was he or his father what would he do and he said AUS....but, it's your choice) that did the surgery was that the AUS would have been the odds on choice. But, most of us just don't want the negatives of the AUS until last resort.

Consider this when we complain about the high cost of insurance or why Medicare in in trouble.

Hey Heavy,
No data here so it's just an opinion but don't you think it must have something to do with the size of the prostate, involvement and invasiveness of the PCa as well as the skill of the surgeon.
Does a big prostate increase your chances of incontinence?
I see your specs are similar to mine. (Sort of). How big was your prostate?

Jeff

110 grams! You didn't have a walnut! Yours was a Macintosh apple. On the other hand, you were 3 out of 16 and 5% involved. I was 7/12, 30-70% Maybe the incontinence factor is the product of all three: mass x % found x % involvement. That will fix the curve.

2 days.... You're on my list, Pal.
Jeff - still leaking

\I too was wondering if size was a factor since that vacated space has to be taken up somehow. Mine was  5.5 cm x 5.7 cm weight: 77 gm.

Incontinent from the start and have not had an erection without the help of a pump since RP. Plus have to use the rubber band to hold erection. Was hoping to fix incontinence first and then work on ED.

I did my sling in NYC and the cost was almost $50k. $38k for hospital and $10k for doctor. I will end up paying about $5k out of pocket and insurance covers the rest.  I am sure there are cheaper places but I was going for the one with the most experience with Virtue and AdVance.

I am considering starting another thread asking for others to tell what the cost of their sling surgery was. Even if insurance or Medicare covers the cost it now appears to me that it is not a responsible thing to do to have an expensive surgery unless the odds are better than what I now perceive them to be.....at least for someone with my history.

Hello Tallguy,

Please know that your continuing post have been and will continue to be of great value to those like you, me and others desiring to end or minimize our incontinence.

Although our journeys had much in common in the early stages, they are very different at this time. Following my open surgery in January 2000, I required 4-6 pads a day in an attempt to keep my clothing dry. I occasionally soaked my jeans to my knees when I was unable to change my pads as needed.

Over time I got my pad usage down to 1-3 pads per day by severely limiting my fluid intake and going to the bathroom 3-4 times per hour to keep my bladder mostly empty. So, without these precautions, I was a moderate to severe leaker

As I have posted before, I was implanted with a Coloplast Virtue sling last July. It was a horrific experience for me. Not only did my pad usage increase from 1-3 pads per day to 4-6 pads per day but the wide spread pelvic pain was intolerable and continuous. It basically destroyed my former enjoyment of life to a state where I felt like I was struggling to stay alive.

Before anyone jumps to conclusions, that this my pain situation was an isolated incident, look at FDA’s MAUDE reports regarding Adverse Events for the Virtue sling.

I was fortunate enough to have the Virtue sling surgically removed from my body last December by a pelvic reconstruction specialist at The Cleveland Clinic. Following the Virtue sling removal, I was implanted with American Medical System’s AdVance sling. The difference has been nothing short of spectacular.

After nearly four months I remain 100% dry for the first time in ten years.
I can drink as much liquid as I desire, do robust activities, cough, sneeze and blow my nose without loosing one drop of urine. I have not required a pad since one day following the December surgery.

Although I continue to suffer from some scrotal pain and other pelvic pain, it is improving. Most of the numbness from the first implant has disappeared but I am certain the pelvic nerves remain irritated and possible permanently damaged from all the trauma.

I want to compliment HealingWell’s Moderator for questioning a posting on the 9th of April by a new member signing in as Virtue Sling. Before reading the Moderator’s questioning of Virtue Sling’s authenticity, I too thought it read like someone trying to hawk a product through a “back door” approach.

I think no one is better suited to report their satisfaction or dissatisfaction, regarding a product or device, than some one that has had a personal experienced with that product or device.

That is why I would find it totally repulsive to learn the individual, posting as Virtue Sling, was not a cancer survivor but a wolf in sheep’s clothing.

Once again I want to thank the Moderator for keeping this site honest.

Best wishes to Tallguy and all,

John

Post Edited (male_sling_problems) : 4/13/2010 3:19:43 PM (GMT-6)