AUS AMS 800 update

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Neoman
Regular Member


Date Joined Nov 2010
Total Posts : 192
   Posted 12/31/2010 1:26 PM (GMT -6)   
Just wanted to give an update on my AUS that was activated right before Thanksgiving.
 
That night (Thanksgiving eve) I went to bed without a bed pad/depends for the first time since I had my Bladder removed due to Bladder Cancer. Though I wore a thick pad, I felt it would be ok. And it was. I bought a Timex and set it for four hours (which I still do today) I get up once or twice a night to void just in case of leakage. I do not have a urination urge since I have a Neo-bladder.
 
My timer goes off every four hours as a reminder to head to the bathroom. If I am walking by the bathroom, and I see I have one hour left, I go anyway and just reset the timer.
 
I have practiced some things, what several of you have told me to try.
  1.  Standing at the urinal and do it standing using one hand without having to drop your pants or feel like you have to sit on the throne.
    - I have learned just to pull up my shorts from below and then I have total access to the pump and can pee just like everyone else.. I just unzip, never have to unbutton.
 
  2. Squeezing the pump just enough to partially activate without fully opening up the device.
    -I do that almost all the time now. Since I have a neo-bladder (made from the small intestines) I do not have a muscle to force out the urine. However, when I press the pump, it unloads right then and there. When the stream lessens, I pump again once or twice. I can tell when the bladder is empty because the stream just stops. I do not have a sensation at all. I suppose my experiance is somewhat different than yours.
 
I am REALLY HAPPY with the AUS. I could not wear shorts, had a condum cath and leg bag on 24/7. I have started to run again. Did 2 miles this morning (my wife beat me!!)
 
I want to thank you guys for talking me through it. I mentioned to a fellow female Bladder Cancer lady that is having issues also and told her to read our blogs on this subject. Not many in the BC world, but a few would benefit from you guys and your experiance.
 
Neo.
( I will have another surgery in Feb at Methodist Hospital in Houston) My neo-bladder has developed for some time several fistulas that have been removed but came back.  They head for my abdomum and I have another one that hit the surface.
 
 

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 12/31/2010 3:18 PM (GMT -6)   
That is good news, I am having an AMS 800 installed on 1/11 also at Methodist in houston, Dr. Boone. I hope the thing works for me as well. Great news for you. I hope they can get your fistulas patched up.
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 after 3 mo. PT
ED, pre-op severe, post op total
10/10 Dr Boone, Baylor recomended AUS
AUS and IPP scheduled 1/11/11
post op psa's 0.04,<0.1,<0.1,0.01@12 mo.

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 12/31/2010 5:21 PM (GMT -6)   
Great news thanks for sharing the news. Ron I know this gives you great hope. :)

Cajun jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 12/31/2010 5:50 PM (GMT -6)   
Great news Neoman, sounds like things are working very well. Running two miles must be a good feeling even if your wife beats you....LOL.
 
My AUS also continues to perform well. I still wear a light womens pad just to catch residual drops that seem to be there since I don't have the patience to wait a couple of minutes after peeing. Also, I will occasionaly get a little leakage if I strain a lot, like swinging a golf club. I can make it a full 18 holes without changing pads, just peeing at the turn.
 
Another thing that I find helpful is that I wear Jockey pouch boxer briefs with a flap that is horizonal at the top. I find this a lot easier to get Willie out. Then, I can easy hold him in one hand while the other hand activates the pump by running it down the outside of the briefs. Acaully I find it more comfortable to activate with the cloth material between the scrotum and my fingers that when I am holding the bare skin.
 
Ron, good luck with yours as well....your life is about to get a whole lot better.
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 : 172
   Posted 1/8/2011 7:27 AM (GMT -6)   
I am scheduled for my AMS 800 on Jan21 at Cleveland Clinic with Dr Drag Montague. 
I have preop 1/19 at Cleveland and Outpatient surgery at Beachwood.
Looking forward to if not eliminating pads at least reducing them allot ( 8 pads/day after Homan Laser for stricture
 
I have office job, what is normal time frame before you go back to work - sitting mostly?
What about going up and down steps - main computer and treadmill in basement?
 
Once I get it or even before, tips on activation or when is the unit normally activated (6 wks?
 
Really appreciate this website, it has been a good send.
 
Thanks you all and wish me or pray for a good surgery.
 
Tom smilewinkgrin

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 1/8/2011 7:51 AM (GMT -6)   
Your Doc will go through all of this with you. I went back to work half days after two weeks...also an office job. I would be careful with stairs, just go slow and easy and don't do too many at a time. I found gettin and out of cars to be the most risky. Bottom line you don't want to put strain in that area. this is more critical for sling implants than AUS. Slings can move out of place if the strain is too great. The AUs is not ginger to move. you are more about taking care of the stitches and internal organs bothered by the surgery, just like After RP.
If you have not checked out my previous tall guy threads you might want to do so. The links are in my profile below...both for my sling and later AUS.
good luck...will pray for your success. You will not be disappointed.
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 1/8/2011 7:59 AM (GMT -6)   
I am getting the AMS 800 1/11 so I can't answer your questions but wish you (and me) a sucessful outcome. I too am anxious about how well this will work. I am quessing that we will not be comfortable in sitting for 1-2 weeks. My doctor did not have any predictions about how sucessful it will be, he said I should be better but the results are variable. Not what I wanted to hear but I think that is the reality. Most of the guys on this site that have it seem to be very happy so lets hope we will be too.
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 after 3 mo. PT
ED, pre-op severe, post op total
10/10 Dr Boone, Baylor recomended AUS
AUS and IPP scheduled 1/11/11
post op psa's 0.04,<0.1,<0.1,<0.01@12 mo.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/8/2011 2:02 PM (GMT -6)   
You might ask does your doctor install a second clamping band (or however they refer to it), instead of the standard usually used of one band/clamp. Dr. Bob Baladament (surgeon). in Michigan has done alot of these proceedures and found using the 2 clamp/bands method gave far better results and a virtual no leak scenario...proper adjustment of those bands he said was very important in the installation. Devices may last overall 10 yrs.+ but then subject to breaking down some as it is silicone and such in its manufacturing composites I heard. Then you get another one installed if and when that happens. No more riding bikes and motorcycles once you have one of these and as mentioned other areas of caution needed to  be known about.   If this helps anyone, good, otherwise yes I don't know much about all this.

Post Edited (zufus) : 1/8/2011 1:05:33 PM (GMT-7)


knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 1/8/2011 3:22 PM (GMT -6)   
The two band was discussed but my doc wanted to try the single then go from there. OK with me as there must be some trade off or all the implants would be two band? As to the motorcyle and bike, he said there would be no damage caused by sitting on the cuff. Those type of seats or any other that appied pressure to the cuff area could deflate the cuff temporarly, the same as when you used the device, so that you would be vulnerable to leakage till it refilled as it does after urination. There all sorts of senarios that I will ask about like what if it breaks and the pump will not open it, I guess i could go for a bike ride? I find it stange to contemplate having to manually open a device so that I can urinate but I guess I am at the end of the road for all natural functioning in that area. I don't have a clue how the car trip home will be as far as urine control. I am bringing all my stuff, diapers, pads, external catheters, leg bags,
and hopefully can keep from having an issue on the 4 hour trip home.
Oh and I signed up for the IPP to be done at the same time. I didn't think that though as far as the ride home, I see that as a complicating factor in where and how to use pads and likely will make the external catheters and bags a no go. We shall see and I will no doubt learn plenty by the time I get home.
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 after 3 mo. PT
ED, pre-op severe, post op total
10/10 Dr Boone, Baylor recomended AUS
AUS and IPP scheduled 1/11/11
post op psa's 0.04,<0.1,<0.1,<0.01@12 mo.

Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 1/8/2011 3:35 PM (GMT -6)   
Boy o Boy!  I am so thrilled when another of us have had a successful implantation.  I am now 30 months post implants (AMS 800 AUS & AMS 700 IPP)!  It is so wonderful to pee normally, isn't it.  And for those of us withe the 700, it's also very, very wonderful to have an erection again.  These were not possible only a few short years ago.   

Neoman
Regular Member


Date Joined Nov 2010
Total Posts : 192
   Posted 1/8/2011 6:25 PM (GMT -6)   
tvohio
 
I started to run in December and now am up to two miles. Had it put in Oct12, activated day before Thanksgiving.
 
 I void before I go and have no leakage. I also do stairs and all of that, but I agree, you can do that later, take the elevator. You will  be sore for 6 weeks or so and that goes down daily during that time, but I was glad we did not try to activate until the 6 weeks was over.
 
Read all the threads posted here, I took what these guys said and then developed my own style!! turn
 
Glad you found us, it has been a God send for me, I pray for you as well!!
 
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
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