AUS AMS 800 ACTIVATED

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tvwohio
Regular Member


Date Joined Sep 2010
Total Posts : 175
   Posted 3/9/2011 3:53 PM (GMT -6)   
3/9/2011 LAUNCHED AND DRY
Went to Cleveland Clinic today and had the AMS 800 Activated.
Based on other info on this unit I took a pain pill JUST Incase.
I didn't really need it.
Checked in and they tested my urine for any infections - thank God they didn't need much because I was still leaking like a seive.
Went through that - no problem and was waiting in Room for Dr Montague
While waiting I had a BRAND NEW Med student - first day, first patient.
Rather funny in one way, she asked why I was there and was it a problem.
I said don't know - I am hoping not but the unit wasn't turned on.
She asked how long I had incontinence etc.
Then she tried some better bed side manner, checked my scar and then nurse came in.  The nurse had been through this many many times so she was instructing the Med Student what needed to be done etc.
 
THE QUESTION:  TALL GUY
SOME SAY YOU SHOULD DEACTIVATE THE AMS800 FOR YOUR URETHER ABRASION
1ST REMARK FROM NURSE - ANOTHER INTERNET GUY!!!
 Her Answer:
 
        DO NOT EVER DEACTIVATE THE AMS800
 
  She stated that if the unit is deactivated at the wrong time:
THE UNIT MAY NEVER BE REACTIVATED - TAKE OUT THROUGH AWAY PUT NEW IN!
  She had one case which Dr Angermeier was in the midst of surgery and the guy had deactivated the unit.  Dr A came out of surgery and "milked" the unit until it finally worked.
 
The nurse had a unit and explained the workings prior to activation and then activated it.  I had asked about double sleeve and she stated not needed with the various sleeves available and Dr M sizes for urether.   She had me stand up, pump, urinate alittle and explained about residual.  She gave me more water and I waited for Dr Montague, Surgeon, who verified I was good to go.
Both Nurse and Dr M stated no restrictions just be smart and don't overdue.
I have following up for xrays in 6 wks which he does Xray in open and closed position to verify no problems.
 
I drove the 3+ hours home and was coughing quite abit.  May have had some leakage but pad didn't seem wet.  Sitting here with just gym shorts on = no pad.  First time in 10 years where I didn't either have catheter or pad on.  May even sleep au natural once again  !!!  turn    With coughing I noted a drip or so - I think but not even sure on that.
 
Not certain if it will get better or worse, right now I AM DRY. 
 
Thanks for all your advise, support and information.
 
Looking forward to drinking water and not having to worry about wetting my pants.
 
Tom
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 3/9/2011 4:09 PM (GMT -6)   
Tom,

Congratulations!!!! I know just how you are feeling.

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 2007 - PSA 3.0 - November 2007
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

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 3/9/2011 11:42 PM (GMT -6)   
I am glad to hear that it was a eureka moment that you hoped for. Ah, drinking water again. I felt sorta naked or like something was missing not having pads or leg bags but I got over that feeling fast.
What the nurse told you is wrong! Well, not completly, IF you deactivate with the bulb too flat, you then can't squeeze it hard enough to "pop" the lock valve. Then you have to "milk" it. I know this, because that was a mistake I made and had some tense minutes getting the thing to refill some I could give it a good squeeze. This subject is discussed in the AMS 800 literature (operating instructions) they gave me at activation. I have worked on learning how to do it right and feel like I can do it consistanly now. However, I have not deactivated mine in over a week now. I feel that I should have some mastery over the unit in case there is a medical situation where it needs to be locked open. I don't don't have that much confidence that medical personal that I might be dealing with in the future will know how to work this thing.
Well, again, congratulations!
Ron
 
ps, another internet guy? that was kind of comment was that? sort of knee jerk. The study that was done on the activate/deactivate was done by my doctor, Timothy Boone ( does not ask his paitents to deactivate) and a urologist at Johns Hopkins ( who does tell his patients to deactivate). So, there are some ,or at least one, heavy weight urologist that would beg to differ with the nurse.
Me, I don't know. And I can't say for sure, but I have noticed some pain after re-activation and no or very little pain where it is left activated 24/7. It could be just coincidence but as time goes on Ii will comfirm this one way or the other.

Post Edited (knotreel) : 3/9/2011 9:59:43 PM (GMT-7)


Neoman
Regular Member


Date Joined Nov 2010
Total Posts : 192
   Posted 3/11/2011 1:57 PM (GMT -6)   

I am so happy for you. I got mine activated the day before Thanksgiving and the next day I stood all day at a Salvation Army event and I just wore my wife's thin pad. I never looked back.

I wore a condom cath on and off for several years with a leg pad. Could not come to the part where I had to change pads every other hour. The leg bag was better for me.

Now, I wear a timex and I set it for 4 hours ( I have a neo bladder) and go at that time or so.

Happy squeezing yeah to you!!

Neo (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

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 3/11/2011 2:37 PM (GMT -6)   
Tom - congrats on the dryness - here's to sleeping in the buff... and feeling like a grownup man all over again.

wish I was dry hugs,
BRONSON
Age: 55 - gay with spouse of 14 years, Steve
location: Peterborough, Ontario, Canada
PSA: 10/06/09 - 3.86
Biopsy: 10/16/09- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/09
Pathology: pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA: 04/08/10 -0.05 -Zero Club
PSA: 09/23/10 -0.05 -Zero Club
PSA: 03/24/11 - TBA

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 3/12/2011 11:30 PM (GMT -6)   
Tom,
Been of HQ for a few days and did not see your great news. Thanks for the opinion about deactivation. Looks like an unsettled question. I did learn how to deactivate mine and I have only done it one time just to know I can do it. Sounds like the part about not deactivating it when completely dry is correct. Directions say wait 20 seconds and that's what I did.
Cheers!
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 : 3743
   Posted 3/13/2011 5:16 PM (GMT -6)   
Tom

Congratulations. Only leakers (and ex-leakers) can understand how good you must feel now! You can finally wear big boy underpants! You can use the remaining pee pads for waxing your car or spreading gun oil on the firearms in the basement. You can now wear khakis or blue jeans instead of only wearing black. Life is good.

If you are still dripping when coughing or straining, I have found the Tena Serenity Ultra Thin pads work great for catching the drips and boosting confidence. I wear half a thin pad when I go out in public. My brain still thinks I'm a leaker but my plumbing knows better.

Good luck to you.
Jeff (LFPF but still taking data)
Age: 58, Mar 35 yrs, 56 dx, PSA: 4/09 17.8 6/09 23.2
Biopsy: 6/09 7 of 12 Pos, 20-70%, Gleason 4+3 Bone, CT Neg
DaVinci RP: 7/09, U of Roch Med Ctr
Path Rpt: Gleas 3+4, pT3aNOMx, 56g, Tumor 2.5x1.8 cm both lobes and apex
EPE present, PNI extensive, Sem Ves, Vas def clear, Lymph 0/13
Incont: 200ml/day ED: Trimix
Post Surg PSA: 10/09 .04, 4/10 .04, 7/10 <0.01, 12/10 <0.01
AdVance Sling 1/10/11

tvwohio
Regular Member


Date Joined Sep 2010
Total Posts : 175
   Posted 3/18/2011 7:51 PM (GMT -6)   
3/18/2011 update on progress.
Well it has been almost 10 days since activated
Overall dry except if do SHAKE Off well enough or if Cough gets too hard and have full bladder. Nothing major just drips which feel weird.

Received my Med alert medal and wearing now - Dr. Montague said it was a good idea.

I went to the Y and have no problem on cross trainer but found out that if I don't wear a pad and do either crunches using machine or other lifting machines I tend to leak a little. Rather embarassing but now I know so will be using some sort of pad - got some left over.

I am slowly getting used to pumping the pump. I am not using just urinal but most times taking pants down and standing and urinating.

Overall, I am happy - glad I got surgery and implanted.
Sleeping just in gym shorts and it feels good. Its birthday tomorrow so maybe go commando tonite!!. Wife likes the NO PAD feel.

For those considering the AUS, it works but make certain you look at all the options prior to settling on this.
Other solutions may work just as well - biofeedback, kegels, sling, bulking etc
I tried the other options prior to having the AUS, so when I did it, I knew it was best option at the end.

Tom
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.

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 3/19/2011 9:02 AM (GMT -6)   
Tom,
I tried several pads to catch those residual drops and found that Always Infinity Ultra ladies panty liners are most comfortable. I cut the bottom 1/4 off. I only wear one per day.
Glad things are going well. Have you tried my one handed technique yet?
Carl

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 3/19/2011 9:47 AM (GMT -6)   
TV, sounds like another good faucet job. I am thinking ,if there is a next time, looking at offerings by Crane or Kohler but like you I am happy with my AMS800. At 5 weeks post activation I am still having some on and off pain and I just finished a week of de-activation as the pain became more on than off. I seem to be doing better now on my 3rd day of activation again and I am now trying to activate just during the day as I try to work around the burning type pain that I get.
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.

tvwohio
Regular Member


Date Joined Sep 2010
Total Posts : 175
   Posted 3/19/2011 11:54 AM (GMT -6)   
knotreel, I had burning and thought of uti but it went away. I haven't deactivated and don't think I will
I have last appointment 4/20 where they xray and see that the sucker works rights.
Good luck with yours
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.
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