6 month post AUS activation journey

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tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 3/2/2011 7:36 PM (GMT -6)   
Had my six month checkup with my doc following activation of my AMS 899 AUS. Some of you have followed my journey since the sling days so I thought I would post this report.
It is really not much to report. Everything is normal. My AUS is working fine and the doc says my experience is at the "high end" of normal. I asked her a couple of things relative to other threads about AUS.
  • To deactivate or not at night. She still contends that evidence pro and con is non conclusive so it is my call. It does relax the cuff and perhaps causes less wear and tear of the urethera but that's just conjecture. Activating and deactivating also may cause more wear and tear on the device but again, just conjecture.
  • She took me through the method to deactivate/activate is I should ever need or want to do so. I intend to practice this a bit and may try going deactivated at night for a while. I have always been able to "hole it" at night. Still get up about two times during the night. An Advil PM helps to sleep better since any little urge seems to wake me up. She says this is fine to do the PM.
  • I commented about being a bit more "bulky" in the scrotum than before. She says this is normal. I still sleep most nights with a knee pillow because it is more comfortable. I can move "the package" from between the legs and it acomplishes the same thing.
  • I continue to leak a little when stressed playing golf or heavy lifting. Also leak a few residual drops after urinating if I don't wait long enough. Wear one light ladies Always Affinity Flexi Wings pad per day. Same playing golf and I change at the turn just to be safe but could probably make an entire round as long as I pee at the turn and don't drink too much.
  • My PSAs continue to be negative and I will continue on the every six month check up.
  • Still have total ED but not an issue for my wife and I. I may take this issue up with a specialist now that incontinence is under control.

My profile below shows links to my other threads if someone new searchs this on HW and would like to access them.

 

Thank God for the AMS 800. It can give you your life back.


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

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 3/3/2011 8:46 AM (GMT -6)   
That's great that you have regained such control on an otherwise messy part of our experience. Good luck, and keep those good psa results.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RP, Path: pT2c, 110 gms., clear except:
Probable microscopic involvement-left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09, 12/10-.09, 02/11-.08
ED-total-Bimix 30cc

Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 3/3/2011 10:54 AM (GMT -6)   
tallguy,

I think my comment to you before activation was that I hope you would be as satisfied with yours as I am mine. It sounds like you are.

You mentioned tackling the ED issue. There are a few of us here that have both devices. I am as satisfied with my IPP as I am my AUS. I often joke that I have to be careful in bed to push the right button...

Wigs
Diagnosed @ age 46 - September 1997
PSA 5 / Gleason 3+3
Seed Implant - January 1998 @ Trident Hospital, SC
PSA 2.4 - July 2007
PSA 2.7 - July 2008
PSA 3.0 - November 2008
Diagnosed @ age 57 - December 2007
Gleason 4+3
Salvage Prostatectomy & Colostomy - March 2008 @ MSKCC, NY
Suprapubic cathether installed - July 2008 @ Cleveland Clinic, OH
Urethral-Rectal Fistula Repair - August 2008 @   Cleveland Clinic, OH
PSA < .03 - Aug 2008
Penile catheter removed October 2008
Suprapubic catheter removed December 2008
Colostomy Reversal - January 2009 @ Cleveland Clinic
Urethral stricture removed - January 2009 @ Cleveland Clinic
(Total incontinence - 4 diapers & 6 - 8 pads per 24 hour period)
PSA < .03 - Jan 2009
AUS implant - May 2009 @ Cleveland Clinic
PSA < .03 - May 2009
AUS activated - July 2009
(Wearing a light pad daily.)
PSA < .03 - July 2009
Penile Implant - December 2009 @ Cleveland Clinic
PSA < .03 - December 2009
Penile Implant activated - February 2010
PSA < .01 - April 2010 
 

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 3/3/2011 12:06 PM (GMT -6)   
Wigs,
Yes, I remember your journey. If I recall the IPP surgery is about as invasive and recovery time about the same as the AUS, is that correct? You had your IPP six months later. My doc also recommended not doing them at the same time. How was your recovery compared to AUS?

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/3/2011 12:16 PM (GMT -6)   
tall guy,

with the excpetion of your ED issue, sounds like all systems are go for you, glad to read that, and especially the PSA part, hope you continue with smooth sailing from this point.


david

Post Edited (Purgatory) : 3/3/2011 6:55:34 PM (GMT-7)


Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 3/3/2011 2:19 PM (GMT -6)   
tallguy,

Recovery was pretty much the same. Soreness in the scrotum. More "junk" in the sack to get used to, but manageable. My operation to activation "waiting period" was six weeks. Upon activiation, I was told to wait for another four weeks before actually using it. He wanted me to inflate daily to get used to it. Man, was I disappointed!!! It was actually Valentine's Day weekend last year and I was really looking forward to it; however, I was benched by the doc. Well, I only waited about two and half weeks. All's good!!!

Wigs
Diagnosed @ age 46 - September 1997
PSA 5 / Gleason 3+3
Seed Implant - January 1998 @ Trident Hospital, SC
PSA 2.4 - July 2007
PSA 2.7 - July 2008
PSA 3.0 - November 2008
Diagnosed @ age 57 - December 2007
Gleason 4+3
Salvage Prostatectomy & Colostomy - March 2008 @ MSKCC, NY
Suprapubic cathether installed - July 2008 @ Cleveland Clinic, OH
Urethral-Rectal Fistula Repair - August 2008 @   Cleveland Clinic, OH
PSA < .03 - Aug 2008
Penile catheter removed October 2008
Suprapubic catheter removed December 2008
Colostomy Reversal - January 2009 @ Cleveland Clinic
Urethral stricture removed - January 2009 @ Cleveland Clinic
(Total incontinence - 4 diapers & 6 - 8 pads per 24 hour period)
PSA < .03 - Jan 2009
AUS implant - May 2009 @ Cleveland Clinic
PSA < .03 - May 2009
AUS activated - July 2009
(Wearing a light pad daily.)
PSA < .03 - July 2009
Penile Implant - December 2009 @ Cleveland Clinic
PSA < .03 - December 2009
Penile Implant activated - February 2010
PSA < .01 - April 2010 
 

tvwohio
Regular Member


Date Joined Sep 2010
Total Posts : 175
   Posted 3/3/2011 8:03 PM (GMT -6)   
Tall Guy - March 9th - blast off for me and activation - 6 weeks were forever.
I guess it is always dark before the storm, pad count now is horrible and end up wetting myself more than would like

You guys gave me some good questions to ask and consider.

Exercising - anyone doing weight lifts - squats etc with AMS.
I can still feel incisions in scrotum area and top is healing but not as fast as I would like

Thanks and will let you know after a couple of days of practice.
Prostrate Cancer 2001 RP 51 years old
PSA 6.8 Gleason 3 + 2 40% T3bNxMo moderately differentiated adenocarcinoma
RP - cancer in apex area contained but nerve sparing was not successful
Bulking using both collagen and teflex unsuccessful for continence
AMS 800 AUS installed 1/22/2011

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 3/3/2011 11:06 PM (GMT -6)   
Carl, great that your 800 has officailly made the 6 month mark. I freted about open or closed at nite and it looks like mine is more comfortable when I just leave it "on" all the time. I seem to have some intermitant burning pain after turning it back on but not hardly any of that if I just leave it on 24-7. This doesn't seem right and i don't have enough data to say conclusively that this is the case for me. I got my IPP activated today and would like to recomend that to you but way too early for any recomendations and all I can say is it doen't hurt anymore.
TV, my AUS worked so good, i could not accept that is was working that well till days later. I hope you don't get any pain like I did but I am the only one that seems tobe experiencing that. Hope you hear you report a big " dry a last" cheer.
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.

SPACER
Regular Member


Date Joined May 2010
Total Posts : 22
   Posted 3/24/2011 1:04 AM (GMT 0)   
Thanks Tallguy for your experiences with your AMS 800.
I am scheduled to get one this coming July at Sunnybrook. You have answered a lot of my concerns.

Thanks,
Bob

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 3/23/2011 7:41 PM (GMT -6)   
Bob,
Glad I could help. Feel free to email me if you want to talk more. Address is in my profile.
Carl

SPACER
Regular Member


Date Joined May 2010
Total Posts : 22
   Posted 3/28/2011 5:50 PM (GMT -6)   
Thanks Carl,

I appreciate your offer & I am sure I will be contacting you.

about Deactivation:
This report recommends nocturnal deactivation to lessen the 3 to 10 % risk of urethra atrophy over time.
Of course a pad would be needed at night, in my case when the flow is very low.
I think it is on page 3 of 4.

http://www.cuaj.ca/CUAJ-JAUC/vol2-no5/14-pointcounterpoint-herschorn-oct-08.pdf

There are a lot of scary stats in the report but the AUS is still the gold standard.

I will go with whatever Dr. H suggests.
Bob

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 3/29/2011 5:53 PM (GMT -6)   
Bob,
Interesting that your doc recommends deactivating the AUS at night. My doc feels that it will make no difference. There are a lot of conflicting opinions about this and the literature seems to be totally non conclusive.
Thanks for the link, I will check it out.
Carl

Neoman
Regular Member


Date Joined Nov 2010
Total Posts : 192
   Posted 3/30/2011 12:09 PM (GMT -6)   
I never have de-activated and do not really know of a reason to do so unless you are in the hospital. I have my watch set to 4 hours to remind me to void, since I have no sensation (I have a neo-bladder) to urinate.

You guys with a normal bladder, still get the urge to pee? I suppose you all do. Would your bladder try to push the fluids past your AUS if you did not?
When my neo bladder fills up, I start to leak a fair amount, so that is why I set my watch at 4 hours, day or night same amount of time.

I am glad tallguy (I am 6'8"" by the way!!) that all is good as well with the others here!!

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

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 3/30/2011 12:31 PM (GMT -6)   
Chris,
I go about every two hours. Might be habit. But, I also think I have a greater tendency to leak the fuller I get. Stress can be a factor so if active the tendency to leak is greater...duh.
I an 6' 4" so perhaps altitude is a factor for us.
Carl
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

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 3/30/2011 5:06 PM (GMT -6)   
Chis, suprisingly the AUS works for us "bladder" guys with a normal feeling. I have not have any pushing of fluids past the AUS as the urge to go gets very unfortable well before that has happened. I guess as an experiment i could not go and see what would happen and that will happen one day, maybe by accident. My AUS does not leak at all after it has closed it's self. I do have the ablity to stop and start urine flow with my natural sphincter and I think when the urge hits I begin to use the natural sphincter which does not work without conscious intervention.
I have started deactivating at nite and if fact I am deactivated now as I have been trying to give my urethra a rest from the pressure. I have had pain and burning which is not a good sign I think. So, I am hoping to avoid a major issue, time will tell. Not much the doc can do about it now.
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.
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