AUS activation tomorrow

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knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 2/8/2011 8:19 AM (GMT -6)   
Headed to Houston today for the "activation" appointment tomorrow.  LFPF, that is my dream but i hope I have not let my LFPF hopes become my expectation. Whatever the outcome it should at least be better. I did some online research and I found that the the AMS 800 AUS is available in 4 pressure setting, with the max usually reserved for cluff placemant on the bladder neck rather than the uretha just downstream of the external (pelvic floor) sphincter which is where mine is. I have lots of questions too. I never thought about what happens if scenarios like; fails closed with inoperable pump? what type of catheter could be used for how long? can a suprapubic catheter be placed without damaging the tubing and resevior which is in that area? does "increased risk of infection" extend long term and special care required during dental proceedures? should I lock open the AUS at night to decrease damage to the uretha? and so on.
I am going to drink a bunch of water just prior to the visit so I can test it right a way and I hope to drive back from Houston with only a light pad ("for data"). I am bringing my wife into the visit so she can understand how to operate the thing if need be and what emergency room proceedures need attention.
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.

Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 374
   Posted 2/8/2011 8:21 AM (GMT -6)   

Good luck, Ron

Arnie in DE


Age 56 (biopsy & surgery)-PSA-3.9-Biopsy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3) 1/26/09-DaVinci Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA-Dr. David Lee
Path. Report- G7 (3+4)Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins
Continent at 3 mos.------ED improving
PSA at 2 yrs-<0.1

Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 2/8/2011 9:06 AM (GMT -6)   
knotreel,

Good luck and I hope you will be as satisfied with yours as I am mine.

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 
 

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3741
   Posted 2/8/2011 9:11 AM (GMT -6)   
Hey Ron,

Good luck tomorrow. Those questions gave me the shivers.

Here's a bit of data for you to help decide how much and when to drink. These are my values so your mileage may vary.

If I drink a volume of liquid, it will arrive in my bladder at a rate of 70-80 ml per hour plus 20 minutes. For example: Let's say I drink 240 ml (8 oz) at 8:00 AM. It takes 3 hours (at 80ml/hr) plus 20 minutes to pass through so at 11:20 AM I will have ~240ml in my bladder ready for "testing".
My full bladder alarm goes off at about 300-340ml. So if I drink a full 350 ml of coffee at 8:00, like clockwork, I will have a strong need to pee right at noon and will catch 280-325ml in the bottle.

I have found no way to increase the processing rate. It is always in the 70-80 ml/hr range no matter what I drink.

I am anxious to know how long it takes for you to empty. It takes me about 2 full minutes! That seems like forever and is a bit embarrassing in public situations. At home I bring a magazine and put it on the back of the toilet tank cover and rest against the wall.

Make sure you know which one is "Come" and which is "Go". And take data. We'll be able to compare notes at Cajun Jeff's place in April.

Good luck friend. May you become the poster child for American Medical Systems.

Jeff (AMS AdVance Sling - LFPF but still wearing one for data - 5.5ml/day)

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 2/8/2011 9:45 AM (GMT -6)   
Good luck Ron, hope the results are dramatic and all you wished for... turn
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, 01/11-.09
ED-total-Bimix 30cc

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 2/8/2011 11:51 AM (GMT -6)   
Ron:
-wishing all the best for the activation -
- all I can think of is.. "keep a stiff upper lip"....
(don't mind me, it must be the cold... bbbrrr)

- who knows... one night your wife may activate you while you are asleep ... payback time?
:-)
(see excuse above)

-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: 03/12/11 - TBA

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/8/2011 11:56 AM (GMT -6)   
Good luck, Ron, that's an important event
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 2/9/2011 7:58 PM (GMT -6)   
Ron,
Glad you are almost there. I don't think you have much to worry about. I'm sure your doc will put your concerns to rest.
I know a guy who deactivates his at night. My doc says no need and that will not increase effective life. She did not even show me how to do it although the directions are in the brochure on line.
I wish you LFPF....it will be a grand day. You are finally there.
Give us a report tomorrow.
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 2/9/2011 8:59 PM (GMT -6)   
Thanks you guys for the well wishes. I got this thing turned on around noon today and they sent me out to find something to drink and walk around some. There are plenty places to eat and drink in the huge Texas Medical Center. They said when I needed to pee come back and they would show me how to pee. That sounds weird! They were pretty sure I would be back! I walked around and drank some coffee and I thought I WAS peeing all over myself so I went to a restroom and took a look, hummm, looked ok, then I tried to force some urine out, couldn't! I realized at that moment, HEY, this thing might work. And so it does. Jeff has a bunch of data and now it is up to me to collect some on this pincher system. I drove about 400 miles this pm and ended up with a wet spot on my drawers and it wet though to a small wet spot on my pants. I think this was all due to one badly done pee session. So next, in the comfort of my home, I will "play" with this some ( collect data) to see how dry I really will be. All my questions were covered by the answer " get a urologist to do it" except two. Long term infection risk was not a problem like other implants tend to be. The infection risk is mainly short term during the initial healing. As to weather to open the cuff at night. That was a longer discussion and bottom line was, there MAY be some benifit but studies have failed to show that and the study that my doc was involved in did not show this to be effective but.....
Now after getting home, my uretha ,where the cuff fits, hurts from the new pressure and sitting on it while inflated maybe added some trama too. So, tonight i will lock it open to give my poor little uretha a good night's sleep. So the jury is out till on exactly would good it works but it has already surpassed all my lower expectations, so I am already very pleased and I will say it was ,and is, a sucess.
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.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/9/2011 9:23 PM (GMT -6)   
that is good news, ron, really good news
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 2/10/2011 9:57 AM (GMT -6)   
Ron,
Good stuff! I remained tender in all areas down there up to and after activation. This was especially pronounced around the scrotum. Also, I seemed to "feel things" in places that were not normal. Example, sometime I would think I felt pee on my leg/thigh but it must have been a nerve acting up. Thus, I am not sure one can trust all of the sensations we get depending on what nerves have been affected by the surgery. I don't know what I don't know or know (Rumsfeldism) about this but this is what I suspect.
My Doc confirmed what yours said about the data/studies not confirming any benefit of deactivation. That said, our all situations do vary so I guess what works for you is what you go with.
Good news so far! Have fun with your new toy.
Carl

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 2/10/2011 2:39 PM (GMT -6)   
Carl, it is interesting what you find out or better put, what you don't find out at these visits. I didn't see my doc till after the activation and then only because I finally asked one too many question for the resident who was seeing me. The resident wanted to doc to discuss the night time lock out as he was not up to speed on that. The resident told me (after I asked) about how to lock/unlock and he didn't mention the side squeezing even after I mentioned it, he didn't know about it. Funny thing was I asked him for some literature on the AMS 800 and low and behold that was explained fully in the handout. He should read that so he won't look foolish next time. I think he was shown how to unlock by the my doc who uses an undocemented short cut on how to expand the bulb without side squeeze. I guess that is how these guys learn by getting on the firing line with patients, but it gave me a chuckle.
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 : 419
   Posted 2/10/2011 6:20 PM (GMT -6)   
That is so familiar. We take too much for granted about what these people know.....or dont know. Aren't you glad you read up and are on HW. We learn more than the interns. They should monitor HW.
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
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