Anyone have a sling installed by Dr Robert Mayer Univ of Rochester NY?

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Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 12/1/2010 4:08 PM (GMT -6)   
Well, I gave it my best shot but it is time to move on and get serious. I'm incontinent. There, I said it!
I had a date with DaVinci 16 months ago and have been doing kegels ever since. I weigh my pee pads daily and have tracked my leak rate like a contestant on "The Biggest Leaker". I saw steady progress up until 2 months ago but my curve has flattened out at 100 ml per day.
I had a cystoscopy 5 months ago and was told I had a short sphincter.
It's time for intervention. A sling? I don't think I'm bad enough for an AUS since I do have some control. I'm fine until about 11 AM.

My appointment is next week with Dr Mayer and I'd like to have some input from anyone who had a similar sling job.
Did it work?
Is it still working?
How was Dr. Mayer?
Would you do anything differently?

I'm hoping to bow to the voice of experience.
Feel free to either answer here or contact me off line. My email is only a click away.
Thanks,
Jeff

-------------------------------------------------------------------------------
Married 35 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out prostatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 3+4=7, 3+3=6. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX

Incontinence - 8/20/09 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. "There must be another issue."
5/22/10 10 months: 2 pads per day, 190 ml/day Scope on June 15 "Short sphincter"
7/15/2010 one year: 2 pads per day. 140 ml/day, dry in bed.
9/15/2010 14 months: 2 pads per day 120 ml/day dry at night
11/15/2010 16 months 1.5 pads per day 110 ml/day dry at night and morning.

Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04
1/14 6 months - 0.05 (Siemens Centaur)
4/14 9 months - 0.04 (Siemens Centaur) and <0.01 (Roche ECLIA).
7/12 1 year - 0.03 (Siemens Centaur, direct chemilum); <0.01 (Roche Cobas 601 ECLIA)

Post Edited (Worried Guy) : 12/1/2010 3:16:51 PM (GMT-7)


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 12/2/2010 6:20 AM (GMT -6)   
I just read the paper entitled: Slings for Stress Urinary Incontinence in Men: An Update - 9 Sept 2010

It is making me doubt the effectiveness of slings.

On the fifth page (page 187) It says:

" The most recent publications, however, have reported
substantially lower success rates than previously published.
Cornel et al. [45•] reported that in their cohort of 35
patients, a cure rate of only 9% was achieved at 1-year
average follow-up, with an improvement rate of 46% based
on pad test. In addition, 9% were found to have more
leakage postoperatively than they had prior to the operation.

....at a mean of 9 months postoperatively,
patient-determined success was 51%, with 29% of patients
pad free. This was in contrast to the pad-free rate of 51%
documented at 3 months. Upon questioning, only 53%
would recommend the procedure to a friend.


Guys,
Has anyone had good success with a sling? Am I wasting my time?

Jeff

TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 12/2/2010 11:05 AM (GMT -6)   
Jeff
I can't speak for myself but I have a good friend that had a sling operation at Duke University about a year ago and he is doing great. Best of luck to you.
TTaylor
Robotic prostatectomy 10/26/2010, due for HT and RT in Janury 0f 2011. Gleason Score 4+4=8, Margin envolvement was present with perineural invasion, glandular and stromal hyperplasia present,pT3 pNO and no evidence of metastatic adenocarcinoma.

OKNow
New Member


Date Joined Nov 2010
Total Posts : 14
   Posted 12/2/2010 2:09 PM (GMT -6)   
I had the Advance Sling operation at Duke University-Dr George Webster. Very Satisfied. Totally Dry
 
Dr. Webster has a methodology to evaluate the probability of success(improvement) and also being totally dry. Factors include ability to completely close the sphincter, number of pads(your 100ml would be very good), absence of scarring of the sphincter etc. He rates each characteristic from 1 to 5  with 5 being the best. From that, he can discuss the probablities very directly. A perfect 5 in all categories, has 90% success rate and 67% chance of being totally dry. I had some minor scarring on the sphincter, so my chances were 75% success and 50% dry.
 
The operation was outpatient; I was checked in at 6 and out of the office by 11. The incision is made at the perineum, so there is some discomfort, but nothing unbearable.
 
Their experience is that if you stay dry for the first 4 weeks, you'll probably remain dry. They are very straightforward in telling you that they have been doing Advance Sling work for four years, so they only can tell you about "success" in that timeframe.
 
Just as in prostatectomies,especially Davinci surgeries, the   surgeries by doctors with a lot of experience in the procedure tend to have great success rates than earlier ones.
 
The Advance Sling surgery has no effect on your ability to have a AMS800 implant later, should the surgery fail.
 
 
It has returned my Quality of Life. However, each of us is unique and needs to make their own decision. Best of Luck to you whatever you choose to do.
 
 
P.S. The only bad news is that Dr. Webster is retiring soon---may have already done so. However, he has two colleagues, who are also very good. I was very impressed with Dr. Aaron Lintz.

OKNow
New Member


Date Joined Nov 2010
Total Posts : 14
   Posted 12/2/2010 2:12 PM (GMT -6)   
Just wanted to clarify that the discomfort I discussed was post surgery. The operation is done under anesthestia--- lumbar block

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 12/2/2010 5:27 PM (GMT -6)   
Hey OKNow, Welcome to Healing Well!

That's the info I want to hear!
I am surprised there are not more responses. There are so many guys here. Are there really so few leakers that corrected it with a sling?

I will ask Dr Mayer what his methodology is to determine if I am a good candidate. Remember, I have a short sphincter. Will that mean my chances for success with a sling are limited?
And what about those numbers in the study?!?! Only 53% of guys would recommend it to their friends. Really?
The study defines "Cure" as 0 to 1 pad per day. What does that mean? Give me engineering units! Even with that bogus measure they only claim a 9% success rate with AdVance. 45% of patients show "improvement". That's it?!?!?

Hey, I know there are guys out there with much bigger problems. I get it. But this is affecting my QOL. I'm getting frustrated the inability to bend, or walk, or put a log in my woodburning stove without having that pee trickle run down my scrotum. It been 16 months. I'm ready do do something.

Thanks for the info.
Jeff

Kolin6
New Member


Date Joined Mar 2010
Total Posts : 16
   Posted 12/2/2010 9:38 PM (GMT -6)   
Worried Guy.
 
I had my surgery almost nine years ago.
I leaked for five years waiting for the sling to be OK'd by the insurance, because it was still experimental.  The cost then, before the insurance would pay was huge.
I got the sling put in after that, and I have had it now for over three years.  I am dry 100% of the time now.  It's the best thing I have ever done.
My only trouble now is I have been unable to find anything to help with ED.  I will not have an "insert" .............so?
Hope I have answere some of your questions.
Good luck! 
 

LenB
Regular Member


Date Joined Jul 2009
Total Posts : 102
   Posted 12/3/2010 11:05 AM (GMT -6)   
Jeff,
Good luck. I will be watching your progress. I had my surgery (davinci) 9/10/09 and I am now at 2 pads. My doc is still telling me to be patient. Easy for him to say!
If I am not dry by 24 months, I will be doing the sling also.
All the best.
Len

Please email me with your progress.
Age: 65

DX: 7/10/09

Gleason: 7

Biopsey: 2 chips with some cancer cells out of 30.

Robotic Surgery: 9/10/09
Cath out: 9/23/09
1st post op PSA: 10/20/09 <0.1
2nd post op PSA: 1/25/10 <0.1
3rd post op PSA 4/19/10 <0.1
4th post op PSA 7/19/10 <0.1
5th post op PSA 10/11/10 -0.1
As of 11/4/10 Still Wet 2 pads per 24 hr. period

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 12/3/2010 11:57 AM (GMT -6)   
Len,
You and I are on the same schedule. My Uro told me to be patient too. The incontinence doc told me I will not improve and to just get it done. (Of course, both have financial interest in their answers. Darn it.)
It was my daily weighing of pee pads and my graphing that separated fact from fiction. My leak rate had been dropping linearly since January and pointed to a predicted dry date of Nov 1. Around September, I noticed that curve was flattening out and the dry date was moving into 2011. about a month ago it moved to "the twelfth of never" so now I am considering the sling -not 6 months ago.

To be honest I think we all should be weighing our pads. You don't have to be crazy like me and weigh them down to 0.01 gram on a $1500 Mettler laboratory balance. A good postal scale will do.
Data can help us all decide out treatment future. It is so much more accurate than simply saying 1 or 2 pads per day.

I will let everyone know what happens at the doc next week.
Jeff

jerseycity
Regular Member


Date Joined Nov 2008
Total Posts : 123
   Posted 12/3/2010 6:24 PM (GMT -6)   
WORRIED GUY, WHERE CAN I GET THIS STUDY YOU REFERED TO.  NOT ALOT OF SLINGS DONE SO NOT MUCH RESPONSE. I'M DOING IT WITHIN 6 MONTHS.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 12/3/2010 6:57 PM (GMT -6)   
Hey Jerseycity,

The study is in the link I posted above (Yesterday at 8:20). It is in written in blue font. Just click it. You can download the PDF from there.
If it doesn't work for you, email me and I will send you the paper.

Jeff

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 12/4/2010 7:00 PM (GMT -6)   
Jeff,
You and I have been following each other for quite a long time. I can really appreciate your angst. I totally agree that everyone should be weighing their pads. I did the saving of pads and taking them to the doc but in hindsight i think it was a poor evaluation. It was for one three day time period and i am not sure at all it was representative. Each day is different in term of activity, fluid level consumption, diet etc. I am now convinced I should have done my own weighing over a period of weeks and then taken that information to the doc to help evaluate. I really believe I was a heavier leaker than the doc realized and should have gone straight to the AUS instead of the sling (failure) and then the AUS.
That said, outside of dealing with the surgery, pain and recovery, going for the sling first certainly leaves you with the AUS option as long as your insurance does not balk.
Carl/Tallguy
66 year old male
PSA jumped 3 to 8 Jan 2008
pt2b NO Mx with a Gleason score 3+3=6.
DaVinci RP, 7/23/08. Tumor type: Acinar
size 5.5 cm x 5.7 cm weight: 77 gm.
Incontinence & ED. Dry nights , no control during day.
FUDS and cystourethroscopy testing 10/09.
24 hr pad wt. 219gm. AUA sympton index 13/35=moderate
Virtue sling surgery 2/3/10 NYU med center
Appeared to help but gradually returned to pre surgery condition.
Back to 3-4 pads/day.
Latest PSA 4/1/10 negative.
AMS 800 artificial urinary sphincter implanted 7/8/10 at U of MI.
AMS 800 activated 8/25/10 Dry for first time in 2 years.
Links to my journey posts:
http://www.healingwell.com/community/default.aspx?f=35&m=1847812
http://www.healingwell.com/community/default.aspx?f=35&m=1710681
http://www.healingwell.com/community/default.aspx?f=35&m=1948599

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 12/4/2010 8:01 PM (GMT -6)   
Carl,
I do more than weigh the pads. Once my leak rate got down to a reasonable level I started subtracting off the pad weight so I only measured the liquid. At night when I am reasonably continent I cut the pads in half and only use a half. In the morning I use the other half. Around 11 or noon I put in a whole pad. If I am going out I will change to a new pad that might not be full. A typical pad weighs 22 grams. So when I do my weigh-in I look in the bag and count the number of whole pads and half pads and adjust the weight accordingly. I know, I am such a tool. My leak rate is between 100 and 150 ml per day depending upon activity. If I am splitting wood it is up to 300 ml/day. If I am sitting at the PC all day and controlling fluids, I can get it down to 50 ml/day - but that is an unsustainable level.

I will let everyone know what happens next week.
Jeff
I'd be lying if I said those study results (above) didn't scare me.
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