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Neoman
Regular Member


Date Joined Nov 2010
Total Posts : 192
   Posted 11/17/2010 6:57 PM (GMT -6)   
I was reading some postings about the AMS 800. I just got the device installed not due to prostate cancer but bladder cancer ( also had prostate cancer but it was detected after my bladder and prostate was sent to the lab).
 Have since been 100% incontinant using a leg bag and condom cath system. I could not use pads since I would go through them like water al day long.
I will have the implant activated this next Wed (Nov 24,2010) and am anxious because I hope it all work well. I am hoping I can activate it fairly easily.
I am looking for others that have it and just want to connect..
 
Neoman (I have a NEOBLADDER instead of a normal bladder)

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 11/17/2010 9:50 PM (GMT -6)   
Your incontinence level sounds like mine. I just posted on the Tallguy thread that I too will get the AMS 800. I use the same catheter and leg gab setup as well. My friend who just had his bladder removed and got the ileal conduit told me that he thought he was better off than me as his bag didn't require daly changing like mine. It's is pads at nite catheter and bag all day. Boy this gets old, don't it.
I hope your AUS makes you dry. My doctor would not make any prediction on how well it might work but said it would be better than I am now.
I was suposed to have had a sucessful unremarkable RRP. Goes to show that you never know. I hope you post what happens on your activation day, the good part.
Maybe Tallguy will chine in and post a link to his "journey" that he has shared with all of us in the past. Pretty good stuff.
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

Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 11/18/2010 1:52 PM (GMT -6)   
neoman,
I have enjoyed having the AMS 800 for 28 months.  My leakage was as bad as yours, I think, 'cause I had to change out my big pads every 2 hrs or so.  But unless the cuff of the AUS is placed differently due to your type cancer, you should be fine.  I do wear the smallest panti liner made each day because of tiny drips, but it's sure much better than what I had to put up with.  I wish you success with your new AMS 800, and believe it will be successful.
Gene214

Neoman
Regular Member


Date Joined Nov 2010
Total Posts : 192
   Posted 11/18/2010 3:47 PM (GMT -6)   
Thank  you Ron & Gene.
 
Currently I were Depends, a large man pad and the condum cath and bag 24/7 now for 1 1/2 years.. I am so tired of it. When they took my Foley cath out and I peed in my pants all the way home and (this is true for neobladder patients) I could lay on my back for only two hours before I started to leak. So we (neobladder patients) get out of bed every two hours (since I wear a condum cath I can cheat that for a while at night, but usually get up since the cath drains only so well when you are laying on your back). Neo bladder users get a very poor night of sleep as a whole.
 
The doctors never told me that I would have a issue, if I were to have one, what it would be, and if I were to have one, what the solutions were for me to use, i.e. pad, condum caths,  bags, I had to figure all that out on my back in bed with my lap top, seeing my career go up in smoke (or down in urine)!
 
The research out there on the AMS 800 is primarly prostate cancer patients. I googled that and added neobladder and did find some research and the statistics were fairly simular only a smaller pool of participates. So Gene, it looks like I should have simular results. I have a normal high placement of the cuff near my neo bladder. What I do not have is the bladder muscle to push it out. My bladder just gravity drains and I use my abdomum to push out (void) and I may have to activate my cuff twice to allow enough time to "void" 
 
I have also a different issue with a neo bladder, mucas. My neo bladder is made of my small intestine which produces mucas to move food smoothly through the system. It still produces even though it was reassigned to my bladder.. Once in a while a big glob passes through. The doctor said it should be ok, since the cuff is flat and would not impede flow.
 
Well, I am excited to perhaps just were a small panty liner. I can use my wife's pink ones.. so cute!!
 
I told her that I am getting rid of the bed pad, the diapers, all of the equipment that goes with my situation, of course I will give it a few days to make sure!!
 
Chris

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 11/18/2010 4:48 PM (GMT -6)   
Please post the results of your activation. On thing i am confused about concerning the neo-bladder is your sphincter. I assume you end up like us guys who lost the bladder shincter and now only have the "external" sphincter? Men start off with two main sphincters as opposed to women who only have one. After removing the prostate we now have only the one we share in common with women. I wish you dry underware! Good luck.
Ron

Neoman
Regular Member


Date Joined Nov 2010
Total Posts : 192
   Posted 11/18/2010 5:13 PM (GMT -6)   
Yes, they take the bladder and the prostate, so my "internal" sphinter is gone and my external one does not work. Even when I had a Foley cath, I leaked like a sieve around it. So I kinda new I was going to have a problem when then took the Foley out.

Kinda wonder why the doctor did not warn me because he knew I was leaking while Foley cathed.

Chris
Bladder Cancer fall 2008
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 healed and infections heale

Salty_clark
Regular Member


Date Joined Apr 2008
Total Posts : 95
   Posted 11/18/2010 6:52 PM (GMT -6)   
Its been 21 months for me since the AMS800 was installed.  I, too, was a hopeless case of incontinence after RRP.  I  am living a rather normal life now as the artificial sphnicter is working at a 100% level with no leaks except when it is pressured by a violent cough.  I do not wear any pads of any kind.  As an aside for when you are activated I found it very helpful to have a little $2.97 digital timer in the bathroom because I am an impatient guy and the 2 minute wait for the automatic close of the sphnicter was difficult for me and my constantly checking my watch.  I just relax now until the beeper sounds.  It doesn't seem like much but when considering several times per day for the voiding activity  it began to grate on my nerves.  Good luck to you Neoman...hope it turns out ok for you.
 
Salty

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 11/18/2010 10:07 PM (GMT -6)   
Chris, the neobladder might work better with the AUS as you explained it has no muscle to force urine out? These real bladders seem to have a mind of their own and may add an additional factor to the continence issue. Sounds like you should have at least as good, if not better, shot at dryness as us bladder guys. I can't wait to get mine put in and I hope you have a DRY turkey day.
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

Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 11/19/2010 7:46 AM (GMT -6)   
neoman,

Good luck to you next Wednesday.

I had my AUS activated in July 2009 and after being totally incontinent for 7 months, I was going to be satisified with any improvement. I got a lot more. Even though I wear a pad to catch the dribbles when I sneeze or cough real hard, I can honestly say I didn't ever think the device would work as well as it does!!!

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 
 

Neoman
Regular Member


Date Joined Nov 2010
Total Posts : 192
   Posted 11/19/2010 8:59 AM (GMT -6)   
You guys are bringing tears (man tears) to my eyes.. I have been blogging for a year and a half at bcan.org (Bladder Cancer web site) and I am the only person that has a AUS. They all deal with incontantancy in different ways. Mainly just dealing with it, diapers, man pads, getting up at all hours.

I work in a fairly physcial place, walking, sitting, standing, lifting furniture (Interior Design sales manager) and it was impossible to work and try to control myself, infact I could not at all. I learned to wear only black suits, never wear clothes that if I had a leak could show a problem. I walk a 130,000 highend showroom and have stairs, warehouse, three locations and I have to be mobile.

Now, I know I can with confidence.

I like the idea about putting a timer in the bathroom. I will probably also get a timex watch and program that for work. So, it cycles in a two minute frame? Or does different devices vary?

Also, I understand the comment about normal bladders vs neo's. My bladder is like a tube sock. Nothing more. I know I can hold up to 6 hours of liquid with normal fluid intake laying on my back. Maybe 4 hours vertical. The only pressue my bladder will have in gravity and adominal pressure. I will get up once a night I am planning, maybe twice.

I am also hopefull I can start running again. Any of you guys run? My doctor said I am ok to do that..

Chris
Bladder Cancer fall 2008
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 healed and infections heale

Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 11/19/2010 9:21 AM (GMT -6)   
neoman,

Since it was mentioned by someone else, the 2 minute cycle, I'll add my 2 cents' worth.

My instructions to activate the AUS, I should depress the bulb for about 4 seconds. That would activate the AUS and it would take about 2 minutes to open and cycle closed. I have found that I can depress the bulb for about 1 or 2 seconds and will take less time for the cycle to complete. Maybe I have a small bladder, I don't know. But, there are very few times when I have to depress the bulb more than once to feel complete releif.

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 
 

Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 11/19/2010 10:26 AM (GMT -6)   
Hey Salty,
Aren't you the guy who received the AMS 800 and could not get it to work?  The guy I'm thinking about signed off this forum very depressed.  Is that you or am I confusing you with someone else?  Also, didn't you also get the IPP implanted by Dr. Morey in Dallas?

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 11/19/2010 7:00 PM (GMT -6)   
Hi Guys,
As Knotreel said, I have a couple of threads posted that trace my journey. links to both are in my profile below. Let me know if you have any trouble accessing them.
I had my AUS activated the last week of August. All has gone well. As some of you know, I first had a Virtue sling implanted that did not work. After my RP I was a constant leaker during the day but pretty dry at night. Dreaded the thought of an AUS so went for the sling instead. It did not work at all for me. Looking back I should have gone straight to the AUS. It's really no big deal to get used to using the thing and I can claim dryness with only a little residual leaking because I do not have patience to wait the 2 minutes some of you describe. I still work an office job and travel a lot so am an impatient dude.
 
My bladder does not seem to hold a lot. I usually urinate every 2-3 hours. At most I may pee 200 ml or so but normally it's more like 100 ml. I am one of the impatient ones and never wait as long as two minutes after emptying the bladder.....more like 20-30 seconds. Because of that I leak a few residual drops so I wear a light panty liner that will last all day. Even when I play golf I can easily go a full nine holes without leaking enought to fill that light liner.
For the first few weeks I would always go in a stall and drop my pants around my ankles to pee. Otherwise I would tend to sprinkle all over the place and needed to use two hands to activate the AUS.
 
Now I discovered that I can take Willie out just by opening the zipper. I then run one hand down inside my pants between the pants and briefs. I then grab the AUS bulb with one hand through the briefs and activate it with one or two short squeezes. I hold Willie with the other hand so I can always point with accuracy. This lets me go in a normal urinal and no one even notices that I am activating an AUS. I find that I can empty with only a very slignt activation/squeeze of the bulb. I am done in a few seconds. I will wait a few more seconds, I guess only 10-30 seconds and shake out a few drops.
 
Good luck with your activation and do post a thread telling us about your experience. I really find that tips and tricks we all learn are really helpful....even thought we are all a little different.
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

Salty_clark
Regular Member


Date Joined Apr 2008
Total Posts : 95
   Posted 11/19/2010 9:38 PM (GMT -6)   
Gene214 You got me confused with someone else as I have never had any trouble with the AMS800.  The artificial sphnicter and the IPP were installed by Dr Morey in the  same operation and both are a complete success.  Tommy, I remember talking to you on the phone when I was in Dallas for the operation,  Glad to hear you are still doing ok.  Take care.
 
Salty

Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 11/20/2010 2:27 PM (GMT -6)   
Sorry for the mix-up. I remember you now. Gene

Neoman
Regular Member


Date Joined Nov 2010
Total Posts : 192
   Posted 11/20/2010 3:35 PM (GMT -6)   
Now that we got that cleared up....

ha ha

Neo
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

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 11/20/2010 3:47 PM (GMT -6)   
Guys,

I'm going to keep my eye on this thread.
I'm at 16 months and my incontinence had leveled off at 120 -150 ml per day. That's 4-5 oz of pee in my pants every day. I have regulated my fluid intake and drink only when I know I will be sitting and will be close to the bathroom in one hour.
I just drove 440 miles in 8 hours stopping only twice along the way. But, I drank only 8 oz all day. Not good.
On 12/7 I will visit the incontinence specialist and see what he recommends. He's a sling guy so I'm guessing he will recommend a sling.

Jeff (the leaking one)

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 11/20/2010 4:43 PM (GMT -6)   
Jeff,
Glad to hear you are making some progress. But, don't like the sound of that limiting fluid intake thing....sure you don't either. Good luck with your specialist. I know you have soaking in everything up on HW so you are probably as close to an expert as you can get.....most uros included.
Be well!
Carl G (the former leaking one)
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

stxdave
Regular Member


Date Joined Nov 2008
Total Posts : 65
   Posted 11/21/2010 8:35 PM (GMT -6)   
I had an AMS800 installed in April and activated in June. Although it is not a panacea, it is 1000% better than changing pads every two hours and fighting diaper rash all the time.
I now wear one small pad a day unless I am very active and then no more than two. When stooping down, lifting, or coughing I squirt a bit. It takes two cycles for me to empty my bladder if its very full. I squeeze the loop three times very quickly and wait till the draining stops, then repeat the process. I am not due to have a consult again until January, but I'd that over the phone, if they'd let me. Good luck.

Dave
Jul 1999 Age 60 PSA 43 G(3+4=7) T3c 42-3d EBRT w/24mo ADT2
Jul 2001 2nd Op MDA biopsy rev 4+5=9 IADT
Mar 2007-biopsy (5+4=9) in unradiated lobe
Aug 2007-RRP and biorch PSA <0.1
Sep 2008-PSA 0.45 Nov 2008-PSA 0.67 Res Casodex
Dec 2008-Stricture in bladder neck req surgical removal 99% incont
Feb 2010 PSA 2.8 Added Avodart
Feb 2010 More strictures requiring surg removal
Apr 2010 Artificial Sphincter installed
Apr 2010 Stop casodex & avodart
Aug 2010 PSA 4.0
Sep 2010 PSA 8.0 Start Clinical trial TAK-700
Oct 2010 PSA 0.3

Neoman
Regular Member


Date Joined Nov 2010
Total Posts : 192
   Posted 11/21/2010 11:35 PM (GMT -6)   
Dave, Jeff, Wigs, Salty, Carl, & Ron

Hope I got you all.. anyway, this is great, I am down to two full days of waiting then I too can hopfully say what you guys are saying. Ron you are on the waiting list like I am.. your time will come.

I can now, only after six weeks, really grab hold of the thing. They had to take out scar tissue from the last procedure. I was really black & blue this time and part of the scrotum still is sensitive/part numb.

I have taken in everything pretty good.. feel like a pro and I havent even been in the game yet!!

Since I do not have a real bladder, I do not have any "have to go" sensation. I took Salty's suggestion to get a cheap timer. I bought a Iron Man Timex, has a built in timer. I need one for every four hours and can time for two min as well. The only way I know it is time to go is by time. So my timex chimes on the hour and every four hours.

I am wearing it now to get used to it. Then I can time it for two minutes so I know it has closed. I will not and do not have the I am finished sensation. None at all. Since I work and move around a lot, it has to go with me.

I will post again Wed. Thank you all for your comments..

Chris (NEO)
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

OKNow
New Member


Date Joined Nov 2010
Total Posts : 14
   Posted 11/22/2010 11:06 AM (GMT -6)   
Worried Guy said...
Guys,

I'm going to keep my eye on this thread.
I'm at 16 months and my incontinence had leveled off at 120 -150 ml per day. That's 4-5 oz of pee in my pants every day. I have regulated my fluid intake and drink only when I know I will be sitting and will be close to the bathroom in one hour.
I just drove 440 miles in 8 hours stopping only twice along the way. But, I drank only 8 oz all day. Not good.
On 12/7 I will visit the incontinence specialist and see what he recommends. He's a sling guy so I'm guessing he will recommend a sling.

Jeff (the leaking one)
Jeff,
The Advance Sling works if you have the right set of conditions. While I don't know about the rest of your situation, I can tell you that the 120-150ml level is considered an acceptable level for good results. Among the other conditions is the absence of significant scaring on the sphincter and the ability to control urine flow midstream. The good news is that if the sling does not work for you, the AMS800 is still an option. I have the Advance Sling and couldn't be more pleased.
 
 

cejayem
New Member


Date Joined Nov 2010
Total Posts : 1
   Posted 11/23/2010 8:43 AM (GMT -6)   
Knotreel and Neoman (I know you from Inspire/BCAN),

FYI, the RC surgery does not habitually remove the sphincter. Only if there is involvement with the cancer is it removed. In most cases the sphincter remains intact and some level of continence can be achieved shortly after foley removal.

Be well,
Chris

Neoman
Regular Member


Date Joined Nov 2010
Total Posts : 192
   Posted 11/23/2010 11:04 AM (GMT -6)   
cejayem

I do believe when the prostate goes as is normal with an RC, the internal sphincter goes as well. I have not heard it the other way?

Men have two sphincters, and my doctor says mens external sphincter in the abdomnal wall is not very good, but yes, a certain level of continence can be acheived. In my case the external sphincter does not work at all.

Your comment, though understood, I have been 100% incontinent for 1 1/2 years, doing all kinds of therapy. So have these other men who have not and probable never be able to.

Chris (also)
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

Neoman
Regular Member


Date Joined Nov 2010
Total Posts : 192
   Posted 11/24/2010 1:57 PM (GMT -6)   
Hey hey,

Just got it activated this morning..

I brought along a pair of shorts because I have not worn then in over two years because I always had a leg bag on.
Man, I feel naked almost, no condum cath, leg bag, or diapers. I also bought a bag of much thinner pads.

I was a little concerned about being activated, would it work, how well would it work, will I leak, how much. So far so good.
No leakage to speak of. Dr. Boone liked the idea that I wear a Timex and have it set to go off every four hours. He said at night
I can go all night if I want. No reason to get up. I most likely will anyway.

It was much easier than I thought. It is not a pain to activate at all. I also just tried the little activation thing and that worked also.

Thank you guys for your input. I mentioned this web site and you guys to Dr. Boone. I also chimmed into the bcan.org site because a lot of men w/bladder cancer
could use this device if they know about it..

I will see how it all works this weekend and will report back to you

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

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 11/24/2010 3:53 PM (GMT -6)   
Congratulations on your activation.
I am going to be implanted by Dr. Boone as well, that is Dr. Timothy Boone at Methodist in Houston. Is that your Dr. Boone? I really like him and feel comfortable being in his care. I will get mine 1/11 and be activated late Feb if everything goes as planned. I hope mine works as well.
Ok. come with some details when you get a better idea, it sounds like it is working so far.
Thanks for sharing your experience and I am excited about following in your footsteps.
Whooppee for you!!!
Ron

Post Edited (knotreel) : 11/24/2010 3:01:07 PM (GMT-7)

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