Tallman's journey to Coloplast Male Sling Tallman's journey to Coloplast Male Sling
HealingWell
Search Close Search
☰

Tallman's journey to Coloplast Male Sling

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 23 4
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/11/2010 8:53 AM (GMT -5)
Day 8 after Virtue Sling Surgery
Yesterday I went out for haircut (can now sit fairly comfortably) and grocery shopping with wife. Still not supposed to drive since possible pain can cause some danger. This was in directions I got from U of MI before I changed to NYU for surgery.
When I got home I discovered wet underware. Did not soak through pants but was a substantial leak. Possible that getting in/out of car caused this leak or once I had to get my wallet out and did some "twisting". Will check with doctor. Hopefully this will not a common occurance. Otherwise still completely dry. I do have to take my time urinating to be sure everything drains completely and "push" to get the badder to empty completely.
Pain has subsided a lot and not really noticeable most of time. Can now sit normally for short periods while eating. Ate standing up for first few days. Can sit for long periods in overstuffed office chair without pain. Sitting for BM is uncomfortable and can be a little painful (pain shoots up penis) if too much pressure. Important to take stool softener and not get constipated because pushing is a no, no.
Still happy camper but have to recognize that any mechanical fix with slings or even AUS does not get you back to "completely" normal real soon....time will tell.
Posted 2/11/2010 9:21 AM (GMT -5)
Please pardon my double post. I thought the first Day 8 meassage got lost in cyberspace so posted again.

I fixed it, James C.

Post Edited By Moderator (James C.) : 2/11/2010 9:46:28 AM (GMT-7)

Posted 2/12/2010 8:31 AM (GMT -5)
Thanks for cleaning up my mistake List Mom.

Day 9 following sling surgery.

I got a response from my Doctor regarding yesterdays leak. He says it is not abnormal to have an occasional leak during recovery and that I seem to be progressing normally. He also suggested if it happens again to try and associate it with something. Also gave me the green light to travel if I behave myself.

Had another smaller leak yesterday after doing 3/4 mile walking on treadmill. Pain from surgery is now almost gone. A little uncomfortable sitting on toilet but not bad and a little "numb nuts".

Still a happy camper. Hopefully this small occasional leak will not continue but even if it does I am so happy to not be leaking constantly. As Johnny Carson used to say, living on the "edge of wetness" is gone.  I can deal with wearing one pad a day to catch small leaks.

Posted 2/12/2010 11:06 AM (GMT -5)
Tallguy,  Thanks for keeping us up to date on your progress.  The daily updates are very helpful.  I am hopeful the sling solves your problems. I may need to seek a similar solution.  Please continue to update us!

Posted 2/12/2010 7:07 PM (GMT -5)
Tallguy, hey Carl. I might be giving you a call this weekend. If that not cool let me know on HW.
Posted 2/14/2010 9:51 AM (GMT -5)

 

Day 10

Not so good a day. Went out for breakfast, drank regular coffee. Couple of errand stops with wife. In/out of car. Drove for first time since surgery. Afternoon worked at desk for about three hours on tax return. Had pretty severe leak after rising, enough to soak underware but not through pants.. Drank a beer about 4:00pm and had glass a full glass of wine. Leaked some more, not severe. Was a bit uncomfortable sleeping with some soreness in scrotum. Perhaps too much caffine, alcohol and sitting in one position. Hopefully this leaking will not continue. That said, still a lot more dry than my "constant leaking" prior to surgery. Hope tomorrow will be better.

Incisions seem to be healing well. Two small ones above penis are almost fully healed. Two under scrotum on each side of groin, scab came off one and other is almost off. The big incision , about 2 inches between anus and scrotum is still scabbed over but starting to flake off. All of the stitches will disolve and incisions were covered with a glue like substance for protection. Still a bit tender down there and too much sitting in one place seems to aggrevate. Need to move around more I think.

Posted 2/14/2010 12:08 PM (GMT -5)
Hey Carl,

 

It was good to talk to you Saturday. Thanks for all the information. Bad day you say. Yeah, the beer and wine most likely had something to do with it along with the coffee. The things we enjoy seem to work against us. I will keep in touch. Stay standing and upbeat.

Posted 2/15/2010 5:34 PM (GMT -5)
Day 11

Better day and not much new. First day back at work 3/4 day. All went well. No major leaks just a little residule after going.

 Forwarded my progress report from Day 10 to doctor and here is his response:

Alcohol (especially) and caffeine can make incontinence more pronounced. With a sling you stll need your native sphincter to work. Alcohol can relax it a bit and cause some incontinence. Leakage after rising can be caused by putting pressure on the sling. When you get up, roll to one side or the other to avoid that.

So I will now go off alcohol and caffeine for a while and see if there is any difference.

Posted 2/15/2010 7:26 PM (GMT -5)
Carl,

Thanks for letting me know Nitti's response.

So  I'll try to roll to one side when getting up.

Maybe I'll cut back on the caffeine

Don't think I'm dropping my 2 glasses of red wine!!

Thanks again

Ron

Posted 2/16/2010 7:48 AM (GMT -5)

rapids said...
Carl,

Thanks for letting me know Nitti's response.

So  I'll try to roll to one side when getting up.

Maybe I'll cut back on the caffeine

Don't think I'm dropping my 2 glasses of red wine!!

Thanks again

Ron

Ron, Have you also had the Virute sling operation & if so, what has been your experience?  I just noticed your thread lower down the forum, so I"ll amend my question to can you give us a summary of your experiences with the Virtue sling?

 

Posted 2/16/2010 9:24 AM (GMT -5)
To Heavy Leaker from Rapids,

You asked for more info from me....

I had "Virtue" put in on Dec 9 and I'm very pleased. I used about 3 pads a day for over 3 years after prostatectomy and have gone to none now. Both Carl (tallguy) and I used the same doctor (Nitti) one of the inventors, in N.Y

I have noticed, some very little leakage , when shifting from getting up from sitting, or just being on my feet, walking etc for an extended period of time (3hrs) But it's never enough to go completely thru trousers-in my case underwear is just a little damp or wet. Alcohol or caffeine , according to Dr Nitti can increase leakage, so I will watch that (I had been drinkling alot of coffee before these small leaks) Other days I'm completely dry!

So again, I'm very happy. There's no comparison to all the pads, clamps, collection devises etc and "accidents" of before.

It's the newest sling procedure, but I'm glad I gambled a little with it.

By the way, besides being co-inventor , he probably has inserted more Virtues than any other doctor in the country.

If you want any other info, just let me know

Rapids

Posted 2/16/2010 11:01 AM (GMT -5)
Rapids,

Thanks for the info.  I am 3&1/2 months post op & leak 5 to 8 pads a day when active.  If I sit around all say I can get by with 3 pads but I am active, particularly walking.  I am asking because I'm not very confident  that my situation will get better.  Does my experience sound similar to yours?  I have been told that a sling will probably not help me due to the amount of leakage I have & I am trying to get first hand experiences from men who have similar experiences to mine.  I think real world experiences are much better than theorectical suggestions!

Posted 2/16/2010 11:45 AM (GMT -5)
To Heavy Leaker from Rapids

Not sure where you're located, but I would try to visit NY and get Dr. Nitti's opinion.Both Carl and I think he's great.

I believe he mentioned to me putting slings in is all he does-his specialty, so I would get his opinion.  I know he had put in over 100 Advances slings, as ell as AUS's

I also walk alot-try ,to do a few miles a day. I don't think I ever used 5 pads, but possibly 4 when walking and a busy day . Other incontinence specialist I saw at Memorial Sloan Kettering did tell be I had more serious leakage problem than most.  Also, I was just 3 1/2 months post op like you, when I had sling inserted.

Another thought. I was considering having an Invance inserted at Mem-Sloan Kettering (they weren't even doing Advance)before I heard about Virtue, but you must do Eurodynamic tests prior to surgery- I believe that's when they can tell if you're a good candidate. You could have them done where you live and have them sent to Dr. Nitti. Again he's very accommodating- he accepted them in my case from Memorial Sloan Kettering. I only saw him once, just in the office, before the surgery day. He accepted everything, even blood work etc from my regular doctor , because I had had a physical a month before. So everything could be forwarded to him before, and I bet he could give you his opinion even before he sees you.

Again, I couldn't be happier with the results. It is a new procedure, and he will tell you that they have no long range results, and I'm pretty conservative (never buy a new car first model year), but it may be worth a try.

Rapids

Posted 2/16/2010 12:35 PM (GMT -5)
Heavy Leaker,

Rapids and I have similar history. If anything as you will notice from my profile I was probably a heavier leaker than he. I had essentially no control when up and about.

My U of MI doctor was also doing InVance and i decided that if I did anything it would be AdVance or Virtue. I made the decision after talking to Dr. Nitti the day before surgery. I did the urodynamics testing in Michigan before time and he used those test results. I also did the 24 hour pad weight test but Dr. Nitti felt that the 219 ml weight from this may not have been representative....I was most likely leaking more than that. He even suggested I might want to consider the AUS. I was not ready to go that far and like Ron decided to gamble on the Virtue.

As you will note from my posts above I have been experiencing some leakage even though minor. Yesterday I stopped caffeine and alcohol and so far at noon today I am totally dry. So I will stay off of both for a while and see what happens. So far I am still glad I went this route and would recommend Dr. Nitti highly...well worth the trip and expense to NYC for me. He is even not in my BC/BS PPO network so I will have to pay 50% of his bill myself. NYU is in my network.

Posted 2/19/2010 2:17 PM (GMT -5)
Day 16 following sling surgery:

Surgery wounds have now all healed over. Pain is  almost all gone. Still a bit numb and sensistive aroung scrotum and for some reason this seems a bit worse at night. Even to the point of feeling uncomfortable. Still some swelling down there but gone down a lot. Sleep with a small pillow between legs when laying on side and this is more comfortable.

Still leaking a bit during day. Working full time this week and sitting and then getting up seems when it happens. Went completely off caffenine and alcohol for two days and did not see a real difference.

Have been waking up with some urge every 1-2 hours during night to urinate. Back to sleep no problem. Has this just become a habit over past months???

Doctor is saying give things time to settle down and keep behaving myself.

Posted 2/19/2010 3:40 PM (GMT -5)
I leak 300 to 350 ml per day. Every day. I ran my own capacity tests and found I can hold 350 ml max before I feel like I am bursting. (That test can only be done while in bed.) I am confident I empty my bladder completely since the PT's ultrasound and the Uro's dye testing confirmed it. My bladder pressure is about 8 inches of water or 2 kPa -measured by how far I can shoot while standing in my garden and using Excel and high school physics.
With these data can anyone tell if I am a good candidate? Is my leak too high?

Dripping with anticipation,
Jeff
Posted 2/19/2010 7:20 PM (GMT -5)
Worried Guy,

Hard to say about your question. I struggled with the same question being a "constant" leaker during the day. My pad test showed 219ml but I doubt that one 24 hour test was representative. Have you been through the urodynamics/FUDS and cystoscopic testing? If not you Uro should put you through those and then get some opinions. After my local Uro said I was a good candidate for a sling. I think it is a crap shoot for any of us with heavy leaking doing any kind of sling and expecting a dramatic fix. That said I concluded that if any sling was going to work it would be Virtue. I think Rapids will tell you the same thing. Dr. Nitti actually told me I might want to go straight AUS if I expected total dryness. I was willing to give the Virtue sling a "shot" (pun intended). If it does not work I can still go for the AUS. If I get down to a pad or so a day (hopefully better) I think I will be OK with that versus going to the AUS.

You will find your solution but give it time and as much reserach as you can handle.

Posted 2/25/2010 7:23 PM (GMT -5)
Three weeks post sling surgery update.

Just returned from a three day trip by plane to Florida and all went well. Pain is all but gone except still not very comfortable sitting. Continue to have sensitivity/soreness ad base of scrotum and near incision site. Gets a bit better each day but three hours in plane and another hour in car were uncomfortable.

I am leaking some. Mornings are pretty much dry with a few drops in a small ladies pad. When getting in/out of rental car and activity I seem to leak a bit. Day before yesterday I used a full two pads. Today I used only one with minimal leakage. But, I was more careful to not go too long or do too much activity before going. Coughing or anything similar will produce a leak. I do sense that I may be able to improve on this control once totally healed.

I go back to local Uro next week for one month checkup.

I sense I am getting the results that I expected. Not totally dry but a lot better than before.

Posted 2/25/2010 9:53 PM (GMT -5)
tallguy,


Firstly I want to thank you for sharing your journey with the sling. It's been really helpful. I am now about 4 1/2 mos. out of surgery and the doubts are starting to creep in that I may not ever get to be dry without some further intervention. I am dry at night, dry sitting, I can get up and make it to the bathroom (with some squeezing along the way), sometimes a relatively good distance, What I cannot do is retain anything more than that if I am standing or walking for an extended period of time. My question is is that more or less where you got stuck on your incontinence recovery....did you ever get to the point where you were able to walk even a little distance without the leaks? I reached this point several months ago beginnig from not being able to hold anything just after surgery.. Sometimes it's a little better, sometimes a little worse, but I have really seen little improvement in those last two months.



Best wishes for a continued "dry" recovery.



Steve
Posted 2/26/2010 8:07 AM (GMT -5)

cocrgolfer said...
tallguy,

Firstly I want to thank you for sharing your journey with the sling.  It's been really helpful.  I am now about 4 1/2 mos. out of surgery and the doubts are starting to creep in that I may not ever get to be dry without some further intervention.  I am dry at night, dry sitting, I can get up and make it to the bathroom (with some squeezing along the way), sometimes a relatively good distance,  What I cannot do is retain anything more than that if I am standing or walking for an extended period of time.  My question is is that more or less where you got stuck on your incontinence recovery....did you ever get to the point where you were able to walk even a little distance without the leaks?  I reached this point several months ago beginnig from not being able to hold anything just after surgery.. Sometimes it's a little better, sometimes a little worse, but I have really seen little improvement in those last two months. 

Best wishes for a continued "dry" recovery.

Steve

Steve,

Your situation & mine are almost identical.  I had my surgery on Oct. 26th & mirror your incontinence situation.  I cannot go for a walk without constant dripping.  If I go for a 2&1/2 mile walk, I need to start with a dry pad & change when I get back.  I assume from your forum "name" you are a golfer.  I am in Florida for a couple of months & play golf weekly.  Yesterday, I had to change pads on the 4th, 9th, 14th, & after finishing the 18th hole.  I don't get many squirts as I just never build up urine in the bladder when active.  I wonder what percentage of us robotic surgery patients have similar incontinence problems as us.  The statistics quoted to me are that 98% of us are dry at 12 months post surgery.  If that is the case, either we will get much better in the next 8 months, we are in that 2%, or the odds quoted to us are fantasy.  I wish there was some way to get the truth about these statistics.   If you are like me, you are amazed that some guys are continent in a month when we are struggling so much! 

I would really appreciate feedback from guys who are 1 year post-op & also had our situation at 4 months.  Maybe there is hope out there.  I am following Tallguys posts eagerly & am so appreciative that he is sharing his journey to help the rest of us.  I want to avoid the artificial sphincter if at all possible due to the high incidence of failure & replacement of the equipment & the problems I read of erosion of the urethata.  I would also love to hear from guys who have gone with the AUS.  Tallguy, thank you from the bottom of my heart for sharing with us.  You are helping all of us.  Ditto to Rapids for his posts!

Posted 2/26/2010 11:06 AM (GMT -5)
Heavyleaker,

I pasted a link to the most truthful report on post prostate surgery incontinence I have seen so far. Although I am getting real concerned and out of patience with my incontinence, at 4 1/2 months I don't believe it's time to give up. There have been quite a few reports I have seen on the forum here of men who had huge improvements at 7,8, or 9 months. Below is the meat of the report and below that the link to the complete article.

Hey, if you check out my golf bag you'd find pads hanging out of every pocket!

* 28 percent of patients can expect to be LFPF

* An additional 40 percent of patients can expect to pad-free but not leak-free

* An additional 22 percent of patients can expect to be wearing a security pad

* The remaining 10 percent of patients will have some level of significant incontinence

http://prostatecancerinfolink.net/2009/11/16/strict-leak-and-pad-free-continence-after-ralp-is-this-the-real-truth/

Keep the faith,

Steve
Posted 2/26/2010 11:09 AM (GMT -5)

cocrgolfer said...
Heavyleaker,

I pasted a link to the most truthful report on post prostate surgery incontinence I have seen so far.  Although I am getting real concerned and out of patience with my incontinence, at 4 1/2 months I don't believe it's time to give up.  There have been quite a few reports I have seen on the forum here of men who had huge improvements at 7,8, or 9 months.  Below is the meat of the report and below that the link to the complete article.

Hey, if you check out my golf bag you'd find pads hanging out of every pocket! 

  • 28 percent of patients can expect to be LFPF
  • An additional 40 percent of patients can expect to pad-free but not leak-free
  • An additional 22 percent of patients can expect to be wearing a security pad
  • The remaining 10 percent of patients will have some level of significant incontinence

    • http://prostatecancerinfolink.net/2009/11/16/strict-leak-and-pad-free-continence-after-ralp-is-this-the-real-truth/ 

    Keep the faith,

    Steve

     Steve,  Do you do Kegels & what do you think about their importance?

    Ray

    Posted 2/26/2010 11:15 AM (GMT -5)
    To cocrgolfer and also Heavy Leaker, tallguy, worried guy....

    To those who may not know (cocrgolfer), you may want to see my previous posts, but I also had the Virtue sling operation, just as tallguy, with the same Dr. Nitti.  . It is now almost 3 months since the surgery .I had been using about 3 pads a day, and have not used any since the surgery, so I am very happy.

     Similar to tallguy, there are days when I'm totally dry. Other days, based on the level of activity, I notice my underwear is wet, but from only a few drops. On one occasion from walking rapidly on a hard surface (the road) for about 45 min, I did have more leakage than a few drops. I also notice  a few drops when "shifting" from sitting or getting up. I decided to simply put a few tissues or napkins in my underwear if I know (and remember) I will be on my feet for an extended period of time, or just live with slightly wet underwear. I'm assuming it's from the level of stress incontinence.

    I too, did not want to go with AUS, because of all the "equipment" and after I heard most men still need one pad a day. I was ready for "Advance, until I heard about "Virtue""

    Be aware also that some doctors, even at top hospitals, are still using Invance, simply because that's what they are comfortable with, even though that can give you alot of pain for months.

    So I am very pleased, going from 3 pads to none, and will gladly deal with the minor occasional leakage. I'm beginning to think "Virtue" may eventually replace most of the others. And of course, go to a doctor who has done this a fairly large number of times. (Dr. Nitti is in NYC, invented this with several others, and has probably done more than others across the country. And he's a great doctor!)

    Glad to help anyone if there are further questions,etc

    Rapids

    Posted 2/26/2010 12:31 PM (GMT -5)
    cocrgolfer and all,

    You sound pretty similar to where I was. If you read some of my other stuff I never had much if any control when standing or walking, only when sitting or laying down. After 6-9 months I managed at work (and playing golf) with a Cunningham clamp to avoid constant changing. At the one year point I realized that I would not see much improvement and shortly after that found healing well. I was close to doing the InVance sling since as Rapids said that is what quite a few doctors are still doing. My Dr. was doing InVance and had done about 5 Virtues. After hearing about Rapids success about three weeks after his surgery I decided to contact Dr. Nitti and my local Dr. supported my decision to have him do the surgery. EXPERIENCE OF THE SURGEON IS CRITICAL WITH WHAT EVER PATH YOU CHOOSE.  If you want to hear more let me know or you can also email and I will be glad to talk to you by phone.

    Posted 2/26/2010 2:11 PM (GMT -5)
    Tallguy and Rapids,

    Thanks again to both of you....people like you and the reports they share make HW the great place it is.

    Heavyleaker-man, I don't know about the Kegels anymore. I've been doing them religiously for months and as you see they haven't helped me get dry. Possibly the modest progress I have made is in part is owed to them, I just don't know. I guess I'll keep doing them because at least they can't hurt and it doesn't cost much in time and energy. My family doc, an Internist, doesn't believe they help, but my surgeon's PA is insistent that they be continued.

    Steve
    ✚ New Topic ✚ Reply
    1234