Frustrated with AMS Male Sling surgery

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iam144
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 4/28/2010 9:09 PM (GMT -6)   
I was wondering if anybody has had experience with the situation that I currently find myself.
 
A little history (I like bullet points)
- RPP in January 2009
- Incontinent and Impotent from the get-go
- For incontinence I tried:
  - Waiting
  - Using a condom catheter (UroDry... pretty good stuff)
  - Kegels
  - Physical Therapy
  - After all that I went from 5 to 6 pads right after surgery to 2 to 3 pads a year later
- For ED I tried:
  - All the pills: Viagra, Levitra, Cialis: I couldn't take the side effects and I didn't get a full erection
  - VED pumps: As soon as the pump was removed, so did the erection
  - bi-mix and tri-mix injections:  Just made Mr. Happy sore, no more effect than the pills
 
So, my Urologist recommended that I have surgery to "install" two devices:
#1 the AMS Male Sling
#2 the AMS 700 LGX penile implant
both during the same surgery session.
 
One day post surgery, I was not able to urinate on my own.  I was discharged from the hospital with a foley cahteter.  Five days post surgery, I had the foley removed, but I could not void on my own.  Later that evening, I had to go the ER to get another cath put in.
 
Another week passes, I have the foley removed, but I stay at the hospital to see if I can void.  I cannot. So my Uro gave me some intermittent catheters so that I can completely drain my bladder 3x a day at home.
 
I am now 4 weeks post surgery and here's my situation:
- I have to "go" about every hour
- When I do, I void about 150 ml
- When I cath, right after I void, 3x a day, I get anywhere from 150 ml to 250 ml
- When I have the urge to go, it's immediate.  If I'm not near a bathroom, I still leak anywhere from a couple drops to filling my diaper (I'm using the belted shields)
 
That's the main problem.  I'm starting to get the "hang" of the implant.  I can pump myself up to a useful firmness, although I have not been released to attempt intercourse yet.  However, the pump in my scrotum (I call it my 3rd ball) is irritating the inside of my scrotum.  However, I'm sure that will get better as time progresses.
 
So, after all that, am I to expect that the male sling isn't doing the job it's designed to do?  Should I approach my urologist about an artifical sphincter?
 
I'm just frustrated that I'm back to using the diapers PLUS I have to cath 3 times a day.
 
Anybody have any insight?
 
Diagnosed: November 2008: - PSA 4.5 - 3 Cores out of 12 Positive - Gleason 6 (3 + 3)
Surgery: Nerve Sparing RRP on January 6, 2009, Age 53- one night in the hospital
Catheter: Removed on January 20, 2009.
Side Effects:    Incontenance - leaking like a sieve
(as of 1/27/09)  Impotence - half-staff with Levitra
Follow up surgery:
April 1, 2010:
AMS Male Sling
AMS 700 LGX Penile Implant
 
 
 


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4823
   Posted 4/29/2010 1:33 PM (GMT -6)   
Which I could help...But a little bump of the thread might catch someone eles eye.
Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


Utrecht
New Member


Date Joined Nov 2009
Total Posts : 6
   Posted 4/29/2010 3:39 PM (GMT -6)   
While there are certainly a number of people who are helped with the Advance sling. There are more and more urology journal articles that are showing poor outcomes. Including sizeable percentages of patients who need a suprapubic catheter and lower cure rates (most recently an article inn Journal of Urology by Cornel that quoted 9% as really dry)

Hope things improve

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 4/29/2010 4:37 PM (GMT -6)   
Your situation again shows that sling surgery has variable results most of which seem unexplainable. If you did not follow my thread take a look at Tallmans Coloplast male sling journey on this forum. I had the sling implanted the first week of Feb. 2010.  I did not have the problems you are having with not being able to go and needing the catheter. You might also want to check our KWs journey with his Advance sling. You might want to give it some time before you start moving toward an AUS. Sounds to me like you may have some overactive bladder problems and/or some real problems that the sling is causing...... that your Uro needs to address.
My situation was very similar to yours post RP surgery. I have not tried anything for ED other than the big three drugs which gave no help and the pump that works only if I rubber band it off. Just put the ED thing on hold until I get the incontinence solved which will be an AUS mostly likely this July. At age 66 the ED thing is not a problem for me and my spouse. It looks like the AUS where you will need to go but it might be a bit early to do that until you get some more of the problem areas addressed first. Based on your results and problems you might want to get a second opinion if your Uro is the same one that did the sling. Surgeon skill (plus a good dose of luck) is huge with slings based on what I learned on this forum.
64  year old male in excellent physical condition.
PSA jumped  3 to 8 in one year
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.
Largest tumor nodule: 1.3 cm. All margins negative.
Incontinence & ED. Dry nights , no control during day.
Imipramin and detrol, Phy ther. and kegals no help.
FUDS and cystourethroscopy testing 10/09.
24 hr pad wt. 219gm. AUA sympton index 13/35=moderate
Incontinence symp. index severeity score=22
Rec. for sling surgery. Dr. does mostly InVance.
Researched and decided on either AdVance or Virtue.
Virtue sling surgery 2/3/10 NYU med center by Dr. Victor Nitti
Appeared to help but gradually returned to pre surgery condition.
Back to 3-4 pads/day, stopped drugs, plan for AUS next winter.
Latest PSA 4/1/10negative.
 


iam144
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 4/30/2010 8:59 AM (GMT -6)   
Thanks for the feedback on the sling problem.  It's reasurring to know, although still very frustrating, that I'm not unique in having sling problems.
 
I went back to the urology clinic (did I mention that I'm being seen at Evans Army Community Hospital, Fort Carson, CO since I'm retired military) and did get a second opinion and also, during the course of the visit saw the original Urologist passing in the hall.
 
Here's the two opinions.
 
My original Uro is actively following up on this.  He says that he's getting in touch with a doc in Tennesee who "invented the sling" and had done literally thousands of these procedures.  He'll let me know what he finds out.  Also, he scheduled me for a bladder study to see if there's is a over-active bladder problem.  Unfortunately, that's not  until mid-June before I could get an appointment for that.  I am on Detrol to help the urgency, but it doesn't seem to be helping.
 
The second opinion doc says to take a "tincture of time" and wait until at least 3 months post op before he would consider any other procedures such as "trimming down" the sling to help with the retention. 
 
It seems that neither one of them is seeing the entire picture.  Yes, I'm having a urinary retention problem, but it's coupled with an urgency leakage problem.  No matter how much I reiterate that it's both problems, they only seem to be able to focus on one at a time.
 
I guess I'll have to continue the fight as time goes on. 
Diagnosed: November 2008: - PSA 4.5 - 3 Cores out of 12 Positive - Gleason 6 (3 + 3)
Surgery: Nerve Sparing RRP on January 6, 2009, Age 53- one night in the hospital
Catheter: Removed on January 20, 2009.
Side Effects:    Incontenance - leaking like a sieve
(as of 1/27/09)  Impotence - half-staff with Levitra
Follow up surgery:
April 1, 2010:
AMS Male Sling
AMS 700 LGX Penile Implant
 
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/30/2010 2:27 PM (GMT -6)   
iam,

sounds like you are on a very tough journey, i can't offer any advice on either of your major issues, but i certainly give you my care and support as you work through this. sounds like theres not going to be one quick easy answer to either issue. i would sure keep bugging the hades out of my uro if i were in that situation. good luck, and hopefully at some point you too will have good news to report

david in sc
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 4/30/2010 4:05 PM (GMT -6)   
Agree with Purgatory, don't hesitate to bug your Uro and if necessary find one that has a lot of sling experience.....if your's does not.
I lived in The Springs for 18 years and moved to Michigan 5 years ago. You live in one of the most beautiful places in the world.
64  year old male in excellent physical condition.
PSA jumped  3 to 8 in one year
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.
Largest tumor nodule: 1.3 cm. All margins negative.
Incontinence & ED. Dry nights , no control during day.
Imipramin and detrol, Phy ther. and kegals no help.
FUDS and cystourethroscopy testing 10/09.
24 hr pad wt. 219gm. AUA sympton index 13/35=moderate
Incontinence symp. index severeity score=22
Rec. for sling surgery. Dr. does mostly InVance.
Researched and decided on either AdVance or Virtue.
Virtue sling surgery 2/3/10 NYU med center by Dr. Victor Nitti
Appeared to help but gradually returned to pre surgery condition.
Back to 3-4 pads/day, stopped drugs, plan for AUS next winter.
Latest PSA 4/1/10negative.
 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 5/2/2010 8:51 AM (GMT -6)   
  You can read all about my journey in the links at the bottom of this post.  I knew going in the AdVance Sling would probably not "cure" my leaking by I had hoped it would make it more managable.  In the end the AUS was the way I should have went in the first place.  I have had no probleme at all with my AUS.  I do still get some drips but all is controlled using a light womans liner.
  You have to make the decision that is right for you.
  Wish you well on your journey.
  KW
    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
     Dec. 2006 – Oct. 2008 Cystoscope, Two Collagen injections,Second Opinion   
    Consultation for Incontinance at OU Medical Center, Bio-Feedback       
    training, Chiropractic, Accupuncture , AdVance Male Sling, Two More Collagen 
    injections, AUS Installed and Activated (Dr. Morey at UT Southwestern Dallas TX)
    All to try to resolve incontinence (using 6-8 Depends Guards a day)

    To Date All PSA's 0.00.

   http://www.healingwell.com/community/default.aspx?f=35&m=721171

    http://www.healingwell.com/community/default.aspx?f=35&m=978691

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