Do you deactivate your AMS 800 at night?

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Brolin
New Member


Date Joined Feb 2011
Total Posts : 4
   Posted 2/24/2011 4:03 PM (GMT -6)   
My Dr. activated my AMS 800 last May and instructed me to deactivate it every night. I have read on this forum that some guys do and some don't. AMS has told me that he is the expert on the 800 and I was just wondering what others were doing and the logical reason they were doing it.

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 2/24/2011 7:59 PM (GMT -6)   
My AMS 800 activated only 3 weeks ago but I discussed this with my doc. He does not ask his patients to de-activate and further more, he and another doctor, who does recomend nightly de-activtion, did a joint study and the conlusion of the study was there was no statistical advantage. He went on further to say that the study did indicate a "tend" that "could" support nightly de-activation as being helpful but my doc does not ask his patients to de-activate, but he does not discourage it either. So, I there!
Now I have my story about nightly de-activation, the first day of my devise being activated I had a buring pain the seemed to be from my urethra where the cuff is. So each night I de-activated and a coulpe of times I went 36 hours de-activated, hoping that a rest would help the burning type of pain I had. No one that I have run across have had a burning pain that was not associated with urination and my doc was mildy concerned and said my response to initial activation was not the usual and I should not feel anything like pain.
Finally about 4 days ago I did not de-activate and I have just left is activated 24hours a day and my pain went away the first day i did that and has not returned. This has me scratching my head wondering why, but mainly I am happy that I can enjoy the devise without worrying about something ominious going on.
To your question, my logic was not suported by my reality and I don't know what I will do in the future. I will probably try nightly de-activation again.
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.

Post Edited (knotreel) : 2/24/2011 7:02:53 PM (GMT-7)


tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 2/25/2011 1:11 PM (GMT -6)   
My doc's recommendations mirror Ron's. No evidence one way or the other. My doc also observed that by deactivating you are also adding that much more "tread wear" by deactivating.
Mine has never been deactivated since August 2010. I have a follow up visit with my doc next week and will ask again.
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 : 3732
   Posted 2/25/2011 4:17 PM (GMT -6)   
Hey Guys,
Does this mean that there is a trade-off between urethra life and device life? Do you keep track of the number of activations? Do you need maintenance? Do you limit yourself to 6x per day?

As I get used to my new sling plumbing I understand that mine has a limited life as well. Where's that unobtainium fiber we all need?

It takes me 2 1/2 minutes to pee, but I have been able to knock 20 seconds off the time by using the perineum push technique recommended by my Uro. It's definitely NOT something to be done in a public restroom. From what I understand you guys can just reach down, give the 'wheeze a squeeze' and no one is the wiser. Right?

We will have to compare notes at Cajun Jeff's place.

Jeff

Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 2/25/2011 4:35 PM (GMT -6)   
Guys...
I have had this implant for 31 months.  It has never been deactivated except once by my surgeon.  I tried once, following the instructions on the card, but was unsuccessful.  I really need to know how to do it because there might be a time when I'll need a cath (never know when accidents will happen) and if it's not deactivated, that cath will "tear up rip".  Any advice?  P. S. I wear a med-alert necklace with directions to see the card in my wallet.

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 2/25/2011 7:45 PM (GMT -6)   
I pretty much have the feeling that I am going to go when I feel I need to go. I probably go about  4 times during the day and at least 3-4 times  in the evening and over night. So total I would guess to be 8-10 tines in a 24 hour period.
If I have to worry about wearing it out.....guess I just don't want to go there.
If it needs to be redone at some point so be it. Otherwise give me some data and marching instructions on how to extend the life.
Am I wrong headed?
 

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 2/25/2011 10:42 PM (GMT -6)   
Jeff, when you buy a tire you get a tread life rating, i don't know about these things, I didn't ask about tread wear.
2 1/2 minutes, maybe you could work on some sort of external bladder squeezer or something like a milking machine?
Gene and Tallguy, maybe you should learn to deactivate in case of emergencies?I for one, don't count on having anybody available that know how to operate these things. I have a horrible mental picture of clueless medical people not being able to operate the thing if need be.
I is not that easy to do at first and takes some practice and it is easy to lock the device with the bulb too flat and when that happens you have a real hard time re-activating.
Brolin, are you de-activating at night? have you that a few anxious minutes trying to get some fluid in the blub to snap the thing back on?
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 : 417
   Posted 2/26/2011 7:04 AM (GMT -6)   
Ron,
Good advice about learning to deactivate. I doubt if any EMTs or even general practioneers or emergency room interns know how to spin these things.
I read the directions and watched the doc do it. I have just not tried it myself. I have the six month follow up appointment with the doc this week so i will ask her to demonstrate again and practice when i get home.
I think I may post a thread asking if we have anyone on the forum that has had to go through a repair/replacement. I am going to ask my doc how many she has done and recovery time etc.
Carl

Brolin
New Member


Date Joined Feb 2011
Total Posts : 4
   Posted 2/26/2011 7:38 AM (GMT -6)   
I deactivate every night and then the next morning I give it a couple of firm squeezes and I'm good to go. I just want to make sure this thing lasts as long as possible. There has to be some wear and tear pushing the button 365 times a year. Of course you have to consider what the cuff is doing to your urethra.
In the instructions from AMS, they leave it up to the doctor. If AMS doesn't know, then how are we suppose to know what to do? Maybe my doctor was right when he said it all comes down to luck. After 2 slings and now the 800, I think he's right.

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 2/26/2011 7:38 AM (GMT -6)   
Carl, I don't if all the pumps are the same but i was told to just squeeze the bulb once for urination, if fact they repeated that statement several times. Before I got mine implanted, I think I read, several times, that others were giving theirs several pumps? What did they tell you? Mine works good with just one squeeze.
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 : 417
   Posted 2/26/2011 8:17 AM (GMT -6)   
Ron,
I usually give it a couple squeezes. Sometime I don't get a good grip on the slippery little dude. I don't remember my doc saying anything about it but will ask her this week. I try to get it completely open but not so sure that is necessary. As long as you empty I suppose that should be good enough.
Carl

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 2/26/2011 9:01 AM (GMT -6)   
Guys,
Have any of you measured flow rates as a function of number of pumps? Do you flow faster the more you pump? The engineer in me says the device will last longer if the material is not stressed. Can you aim for a flow that has you finishing up in a minute?
My plumbing has a fixed flow. No matter what I do: stressing, lifting a leg, coughing, blowing out , kegeling, the flow remains the same - a pathetically slow 150 ml/min. Stay above that and you won't be the last one out of the john.
Jeff
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

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 2/26/2011 1:43 PM (GMT -6)   
I empty quickly either way but yes, I think the flow is faster when completely open. I have not measured it. As an old sales guy as long as she empties fast and I get on to the next thing I am happy......close enough.
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

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 2/26/2011 1:43 PM (GMT -6)   
I empty quickly either way but yes, I think the flow is faster when completely open. I have not measured it. As an old sales guy as long as she empties fast and I get on to the next thing I am happy......close enough.
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

fogball
Regular Member


Date Joined Mar 2006
Total Posts : 31
   Posted 2/26/2011 3:20 PM (GMT -6)   
A few years ago I asked my Dr. if I should deactivate the device at night or not. His reply was " Do you turn off your computer hard drive when you are finished in the evening?". He didn't care one way or the other. However he suggested that I may want to disable the device to monitor my progress if I chose to continue the kegel exercises.

fogball

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 2/26/2011 3:47 PM (GMT -6)   
Fog, I have a dream, one day in a field of green clover, my OEM sphincter will work again and I can return (urinate) to my pre implant, er, make that pre RP, humm, make that pre enlarged prostate. Oh well, in that green field my plumbing will work like it did sometime way back. It's just a dream so it does not have to be completely correct, just good.
Yeah, I still doing the kegles too. Meantime I sure do like my AMS 800.
Fog, you didn't answer, on or off at night?
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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