Atificial Sphincter After Prostatechomy

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Reminderman
New Member


Date Joined Dec 2010
Total Posts : 15
   Posted 3/28/2011 7:31 PM (GMT -6)   
 
 I would appreciate some comments on the timing of having an artificial sphincter implemented.  I had a robotic radical prostatectomy 4.5 months ago.  Regardless of doing 90 to 135 Kegals a day, I have not made progress in control of my urine.  During a 15 hr. day I lose on the average 20oz. (568 grams) onto pads.  I seem to stay dry at night while in bed but lose a couple oz. in getting up and to the bathroom.  My surgeon has not been alarmed at my degree of leakage and wants to wait until at least 9 months before considering an artificial sphincter.  I have gone to a different urology doctor of good reputation and who specializes in curing incontinence.  He wants to do a cystoscopy at 6 months and if everything looks good, and I'm still leaking as much as now, schedule the implant of the artificial sphincter.  His opinion is that if the leakage shows no improvement at 6 months, it will not look any better at 9 or 12 months.  Will appreciate opinions.
 
Reminderman
 

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 3/28/2011 8:38 PM (GMT -6)   
Rem, I can't say what is the appropiate time but it seems that past 14 months is more the norm. The doctor who did my AUS implant said he preffered to wait that long too, but after his evaluation he said there was no point for me to wait so I had my scheduled at about 10 months and done at 13 months.
His evaluation had two parts, first a urodymanics test and then a cystoscope.
The urodymanics, he said, was the actual test to see if I needed the AUS and the cystoscopy was just to check for things like a tumor or other abnormality that might be the cause of my incontinence.
So at about 10 months I was told that I should have it done.
There have been some guys on this site who did become continent out at over a year but I think all had some type of improvement after the initial post RRP healing. In my case there was no improvement even after 3months of urinary PT that involved feedback and sitmulation.
I don't know what you should do, but I will offer my advice based on my experience. I would first try PT from a qualified urinary therapist, this does not hurt and is not a bad experince overall. I would definately give myself more time if I had been able to gain ANY degree of continence since the initial month or two post catheter removal. I think any improvement would have given me some hope. I would not get an AUS unless it was absolutely necessary. I really like my AUS and it is great and all but.........
An AUS is a big step in my opinion and you will be stuck with it from now on. In my case I as leaking 100% or in other words I leaked all the urine that I produced and never used the toilet except at night or if I was sitting and reading. I would say say that my leg bag usually produced upwards of 36oz per day.
I am sorry to hear of your problem and I am ,by far, not the only one here that ended up needed an AUS or sling implant so you should excect some others to coment. I hope you end up not needing an AUS but it is a cure that is available. and it works!
 

Reminderman
New Member


Date Joined Dec 2010
Total Posts : 15
   Posted 3/29/2011 9:53 AM (GMT -6)   
 
Dear knotreel,
 
Thank you for your reply about AUS.  It is very helpful to me since your leakage is very similar to mine in that the only time I can urinate is after sitting or being in bed at night.  I have been seeing a therapy nurse for evaluating whether or not I'm doing my Keglas correctly.  However, next week I'm going to a PT who specializes in urinary incontinence.  We'll see what happens.  I saw that you mentioned a leg bag.  What system did you use?  I have been using either pads alone or a penil clamp called the "squezzer" which works quite well but I don't use it unless I'm going out for more than 2 hrs.  Thanks again for your comments.
 
Regards,
Reminderman

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 3/29/2011 3:53 PM (GMT -6)   
Unfortunatly what you say sounds all too familiar to me. But who knows the PT may work, let's hope so at least. I switched from the pads after the weather got hot, last summer and I went to condom catheters connected to a leg bag on my calf. These worked quite well for me and were comfortable. It was a sure thing in the mornings when I pluged the tubing to the catheter, leak as much as I could, no worries. I ordered all my urinary supplies from Allegero Medical on line. You can take a look and you may be overwhelmed by the choices. I spent a lot of money making mistakes and finally whittled it down to things that worked well for me. I liked the catheter and bag setup a lot better than pads. So if you get interested in trying to switch to this, email me or send me a PM and I can give you some recomendations that will help you get started.
The good news is that if all else fails, the AUS will fix the problem. However it is sorta strange to open a valve to pee. At first while I was in some absent minded haze, I forgot that I had a new plumping system and tried to pee without opening the sphincter. However, I haven't done that lately.
Anyway, I hope you get some relief and I can really appreciate what you are going through. Good luck
Ron
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent @ 12 months
ED, pre-op severe, post op total
10/10 Dr Boone, Methodist recomended AUS
AUS/ IPP performed 1/11/11 Methodist Houston
post op psa's 0.04,<0.1,<0.1,<0.01@12 mo.

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 3/29/2011 5:48 PM (GMT -6)   
Rem,
My situation has been similar to Ron's in many ways. He and I have written extensively about our journeys on the forum. In my profile below I have included links to threads I started. This includes my first attempt at a sling and then the AUS.
I also was a constant leaker after RP during the day. When sitting or in bed I could make it to the John in time. Otherwise, I would pretty leak completely dry if I was out and about. This never changed and I went to the one year mark before trying the sling which did not work at all for me and then I did the final fix of the AUS. Doing the tests Ron mentioned will give you a good view of your potential for a sling or the AUS. I would give it close to a year before you give in to either a sling or AUS. One never knows how honest these doctors are or whether they just want to do some surgery and make some $$.
I settled into pads and a clamp. The clamp was uncomfortable as hell but it kept me from needing to change pads two or three times a day. You will find a way that works best for you.
Feel free to email me from the address in the profile if you want to talk further and I will send you my phone number.
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

tvwohio
Regular Member


Date Joined Sep 2010
Total Posts : 175
   Posted 3/29/2011 6:26 PM (GMT -6)   
i just had my AUS AMS800 activated Mar 9th after 10 years of good and bad continence.
The Kegels and PT using a anal simulator really worked well and I was 2 pads a day.
Unfortunately strictures caused a problem and I had to get cleaned out and then no help.

I also tried the Teflex and Collagen bulking which didn't do much for me - my Urologist now said he hadn't had much luck with that 1999 to 2001.
I had the bulking in 2001.

I agree with Tall guy and knoltree, we all just got the AUS but you have to heal well and don't rush into AUS unless you have tried PT and other routes while healing

Good Luck
tvw
Prostrate Cancer 2001 RP 50 years old PSA 6.8 Gleason 3 + 2 40% T3bNxMo moderately differentiated adenocarcinoma RP - cancer apex area, nerve sparing not successful Bulking using both collagen and teflex unsuccessful for continence. 4 sets of strictures within 1 yr after RP - 3 manual and 1 rotorotor -9/2010 stricture - suprapubic catheter folled by Homan Laser. AMS800 1/22/11. Dry 3/9/2011

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 3/29/2011 7:11 PM (GMT -6)   
I'll chime in too. I am outnumbered here and don't want to get into a p*ssing contest. (Sorry, I couldn't resist.)
I plotted my progress daily and noticed that my curve began to flatten out at 150-200 ml / day. I went with the AMS AdVance Sling. It works normally but just takes a looong time to pee. 2 minutes 30 seconds.
Keep it in mind if your leak gets below 200 ml/day and have residual control.
Jeff

Reminderman
New Member


Date Joined Dec 2010
Total Posts : 15
   Posted 3/29/2011 8:52 PM (GMT -6)   
 
 
Thanks to knotreel, Worried Guy, and tvwohio.
 
I appreciate all your comments.  I'm going to try specific PT for incontinence starting next week and see how things go.  But, I will have to make a decision if it doesn't go well and I hit the 6 month point and see my new doctor.  Anyhow, for those who mention liking the external catheter with a leg bag, could you please identify the system you finally chose?
 
Thanks again.
 
Reminderman

c130j
Regular Member


Date Joined Jan 2011
Total Posts : 47
   Posted 3/29/2011 9:01 PM (GMT -6)   
I feel your pain brother, I am 7 months post davinci and still incontinence.  Usually  2-3 pads a day @ 150ml per day, it seems to be getting better, some days are better than others but the curve is yet to flatten out.  Uro does not seem too concerned, says I am still healing.  Probably will do cysti\scope with my 9 month check and psa.  Some guys have good luck...continence at cather removal, others are like us playing the wainting game and the stress of making more decisions on what to do, most guys have to wait for the 1 year mark.  Patrick Walsh's book says 98% should be pad free by 1 year.  I was having urge incontinence going 7-8 time a day, uro perscribed ditropan, seemed to help with the severe urge to go every hour.  There is another drug called imipramine that others have taken, suppose to relax the bladder muscle and tightens the muscle tone of the external sphincter.  BTW I just about gave up on the kegals, I still do them but I felt I was overdoing the exercise.  Good luck, there are a lot of us in the same boat.
age 64 @ dx
PSA 2.8
left base G 3+3 30% involved
l/apex G 3+3 20% involved
Da Vinci bilateral nerve sparing 13 Aug 2010 Tulane NOLA (44 grams)
Post path report G3+4, Neg margins, neg nodes, pT2c
PIN identified
3 month PSA 0.0
6 month PSA 0.0
Incontinence 2-3 pads a day OK @ night & sitting
ED as expected but working on it

oojimmyc
New Member


Date Joined Mar 2011
Total Posts : 5
   Posted 3/30/2011 7:51 AM (GMT -6)   
Hi Guys,
Jim here. I'm new to the site and am somewhat impressed with what I see and read. I like and appreciate the upfrontness of the members. I'm the same way..tell it like it is. I haven't even filled out my profile yet. However, I'm in the same boat as most of you. Davinci Oct 09, AUS Dec '10. Still trying to get the E.D. to go away. Trimix is painful and marginal, will try Bimix this week. Keeping my fingers croxxed. Gotta go for now. I've got a lot of reading to do on this forum. See ya!

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 3/30/2011 9:21 AM (GMT -6)   
Rem, I don't use an external catheter "system"  but just parts. So, I will offer you the "parts" that worked best for me and a little discussion.
1. The condom catheter, I like best the Hollister Extended Wear, This is a heavier built unit that is not prone to kinking. There are LOTS of choices for the cath but in think that their intended market leans to the bed ridden or wheel chair bound and some or most catheters are not well suited for active people who don't have some some major health issues rather than people like us who just have incontinence. Almost all decent catheters come in sizes, so you have the right diameter. So get a couple of sizes to try.
2.Leg Bag, The actual bag construction is not that important but the straps are. Since you are walking around doing stuff, and not an invalid, you will need fairly tight straps and only fabric straps will be of any use to you. I used to prefer the Hollister 19 oz bag which comes with some fairly nice fabric straps and I recomend that one to you to start with since this will be an experiment. But after a while you might find the straps are a little too narrow and dig into you leg and sometimes a straps will come undone while you are walking around. So, I switched to a strap the has buttons on it, UroCare Fitz-All, and a UroCare vinly leg bag with twist drain and that is the bag that I ended up with.
3. Extension tube. Get the 18" latex tube (non sterile is fine) and trim to proper lenght.
That's all you need. any probaly all you should buy for the first try.
Other stuff, things that became part of "system" were Torbot Skin-Tac-H which I needed to keep the catheter stuck on without leaking. They tend to loose their grip on me as the day wears on and this product works good for that and you can still get the catheter off without too much trouble(pain). Along the same vein, Some adheasive remover like Uni-Solve wipes or 8oz bottle is nice to have. You will probably want to somehow anchor the extension tube down to your thigh. Tape can work but I ended up using a tab style catheter holder, Cath-Secure mulit purpose tube holder.
Now, here is some other things you might wonder about. the catheter. change daily. The tube and bag lasts about a month but must be washed out daily and sanitized to prevent infection. I used a squirt bottle of Chlorox Cleanup and water and left this in the bag overnite. The cath holder will last about a week. I recomend shaving all the hair off your penis and maybe some clip short or shave around it too. shave a spot on you thigh where you will put the holder.
All this stuff, I found at Allegro Medical supply online. If you go to this site expect to be overwhelmed a bit with the choices available. If need be I can put togheter a list of their item numbers. You night find as I did the items they give you at hospitals and drs. offices to take home are really the low end on quality and stuff is avaialble that really is pretty good.
So, I hope this helps.
Ron
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent @ 12 months
ED, pre-op severe, post op total
10/10 Dr Boone, Methodist recomended AUS
AUS/ IPP performed 1/11/11 Methodist Houston
post op psa's 0.04,<0.1,<0.1,<0.01@12 mo.

Neoman
Regular Member


Date Joined Nov 2010
Total Posts : 192
   Posted 3/30/2011 11:59 AM (GMT -6)   
I used the Condum Cath for about two years before my AUS. I used the Freedom 35 mil cath, and a Bard med size leg bag. It kept me dry although I did also use a man pad and Depends for backup. I could not stand being wet even in a pad.

I used a latex ext. tube and went to Walgreens and taped the tube to my inner thigh with "waterproof" tape, flesh colored tape that worked the best. I could get one to two days on a condum cath before I replaced it. I was also 100 % inconitinant. I wore my cath 24/7 since I have a neo-bladder and would start leaking @ two hours laying on my back at night. Daytime, once the urine hit the bladder it came out.

The AUS, if you decide to go there is wonderful. I wear shorts again, running in the morning.. Just like normal. But it is a decsion you have to make at the right time.

Since I wore the cath and the leg bag for two years, I have a lot of hints I could give you to make that part of your experiance more positive. Email me and we can talk if you want.

Chris
Bladder Cancer fall 2008, age 53
MVAC Chemo fall 2008 to Jan 2009.
RC of Bladder Feb 2009
Stage 2 high grade bladder cancer
also detected after bladder surgery high grade Prostate cancer
Had AMS 800 implanted July 2009 but surgeon nicked uretha and the cuff had to come out. Then developed infection soon after and they took it all out. Reimplanted Oct. 12 2010 after fistula/infections healed

SPACER
Regular Member


Date Joined May 2010
Total Posts : 22
   Posted 3/30/2011 12:37 PM (GMT -6)   
Hi Reminderman,

You are way too early to think of slings or AUS.
At 4.5 months you still have a reasonable chance for continence.
Wait at least a year; My prostatectomy was Oct 09, My Aus goes in Aug 11 (22 months).
If by PT, you mean electronic biofeedback or electronic stimulation, It did not work for me, but it has helped some people.
It may work for you.
I am trying external catheters now but so far, no joy.
My uro suggests a clamp for very active days only.
He insists that no clamp be used for a year; this is to give your sphinkter a chance to improve on its own.

Hope this helps,
Bob

Reminderman
New Member


Date Joined Dec 2010
Total Posts : 15
   Posted 3/30/2011 6:37 PM (GMT -6)   
 
Hey Guys,  Thanks for all the advice you have given.  I have gotten the message that I shouldn't be thinking about an AUS at 6 months time.  Makes me wonder about my new doctor's advice that we schedule an AUS at 6 months if my leakage is no better than it is now.   This doctor has a good reputation, so I will have to have invetstigate.  One key factor could be the amount of leakage I am having which is much higher than most of you. Next step is my new PT program for incontinence with biofeedback . I'll be surprised if this helps but I'm going to give it a chance. Then if no change, a cysto and urodynamic evaluation of my bladder and uretha. If I do wait until a year for a AUS, then dealing with the leakage will be the focus.  You have given me all the key details about using an external catheter and bag.  Thank you!. 
 
Reminderman   
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