AUS question about pain

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knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 2/11/2011 4:00 PM (GMT -6)   
After having the unit activated two days ago, I have been getting some pain in each of the afternoons. The pain is not constant and not bad, say about a 6-7 occasionally on the scale at the worst.  It is a burning type pain that seems to come from the urethra where the cuff is. The last two nights I locked the cuff open to give the pressure point a rest, if that is what is causing it. I emailed my Doc today he will have a comment later but I would like some feedback from other AUS guys. Other than that, this thing is great as I think I will end up classifying myself as LFPF but i need a little longer to evaluate it. But, great so far!
Ron

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 2/11/2011 5:54 PM (GMT -6)   
I did not have anything like that. You might have a little UTI going on down there. Do you get it when you pee? Sounds like something the doc must answer.
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 2/12/2011 7:46 AM (GMT -6)   
Carl, the pain is not associated with peeing. The doc said it "was not the usual response and keep an eye on things and look for any blood". There has been no blood and the pain yesterday occured later in the pm than the previous days and not as bad. The only thing that I can think of that I did that might have caused soom irration was I put a pad in my crotch area for the trip home, not knowing if I needed it or not. After sitting on the pad for several hours before it got uncomfortable and i removed it. I don't know? I am locking the AUS open at night and will leave it open a lot today.Darn, and it is working so good.
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 2/12/2011 8:04 AM (GMT -6)   
Ron,
Sounds logical! Lose that pad man. Forget the measuring and just enjoy the toy. You got it to use so use it the way it's intended. I think the deactivation thing is highly overrated unless you just want to test your ability to be dry without the AUS. But, that ship has sailed....sort of. Anyway you are obviously headed for dryer times either way. tongue
I do sense that it makes sense to keep pressure off that area where the cuff is for a whole bunch of reasons!
Cheers!
Carl

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 2/12/2011 11:18 AM (GMT -6)   
This does have me concerned. I am going to use pads today as well as tonight as i don't want to start a process that could lead to errosion of the urethra. So, I'll give the cuff a 36 hout rest and see what happens sunday.
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 2/12/2011 8:40 PM (GMT -6)   
Ron,
Sorry if you have read about this in my other posts. I still wear a light pad.I have tried lots and the best I have found is Always Affinity ladies panty liners. You can't even tell they are there and they put no pressure on the urethra. I wear one all day to catch any residual drops and none at night.
Also I use jockey boxer briefs with a pouch with flap at top. I can go standing at a urinal without dropping or even unbuttoning my pants, just unsip the fly and shove my one hand down inside between the shorts and pnats and activate the aus with one hand while holding Willie with the other. Works like a charm. No one standing I'm the next urinal even notices. If they ever do I may get nervous and run. LOL

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 2/12/2011 10:12 PM (GMT -6)   
Ron,
I am so glad to see that it's working but too bad about the pain. I don't understand how you can have it activated so soon. Weren't you supposed to wait 6-8 weeks? We're both coming up on 5 weeks. I'm still walking with baby steps and get a panicky feeling just thinking about walking outside in on the ice. I'm still not lifting more than 5 pounds.

Your idea of relaxing the cuff at night is very clever. Why have it cut the circulation when you don't need it?

Maybe it is too early to answer these questions but...
How long does it take you to empty? Do you have the same pressure as before? Can you write your name in the snow? (Before my surgery I used 48 pt Arial Bold to write my initials. Now I'm using 10 pt Times New Roman to write my name, address, social security number, ...)

Good Luck. May your new plumbing meet or exceed design specifications!

Jeff

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 2/13/2011 8:47 AM (GMT -6)   
Jeff, the flow is good, only a little less than before the devise. Writting my name? I might get the R done but I run out of ink pretty quick. I don't know, but I am "Worried" that this thing might mess up, ie errosion of the urethra or something but it could be something else like some adhesions pulling apart? who knows?
I thought is was a 6 week wait too but my doc appartently activates in 4. He says you are not suposed to feel it but if that were the case you would not feel it when they put a catheter in and we all know we feel that! Maybe i am just the sensitive type..
about the data, not scientific, no actual measurements taken but I am wanting to empty when I have about 100-150ml and that takes about 10 seconds. I always liked to pee off my back deck whic is about 12 feet off the ground and it appears I can come come to shooting it out as far as I could about 15 years ago.
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 2/13/2011 9:05 PM (GMT -6)   
Hang-in there Knotreel it will work out.

My activation is roughly 23 days away and anything guys write to you, I am reading with interest.

I have a 3.5 hr drive after activation and now using the heavy duty pads/

Sounds like i need to get either the TEVA which are not as intrusive or panty liners.

Keep your head up

Tom
Prostrate Cancer 2001 RP 51 years old
PSA 6.8 Gleason 3 + 2 40% T3bNxMo moderately differentiated adenocarcinoma
RP - cancer in apex area contained but nerve sparing was not successful
Bulking using both collagen and teflex unsuccessful for continence
AMS 800 AUS installed 1/22/2011

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 2/13/2011 11:13 PM (GMT -6)   
TV, you should not need any pads but me wanting to be prepared, i brought an assortment. The mistake I might have made was shoving a too large pad way under where I sit and it got bunched up and may have cused some extra pressure on the area where my cuff is.
How is your pain. I have two pumps and believe it or not, the small AUS pump seems to be more noticable and less comfortable than the IPP pump. My IPP pump seems to have landed in a good spot and does not move around much but AUS pump is very mobile and can sometimes be a little uncomfortable but both systems are getting more and more comfortable each day now. I hope your activation produces the dryness I have without any worries that I have been having. Seems what I have had is not common. Looks like you have been suffering with wetness a long time and this device should be a huge improvement.
I went back to using my AUS today after a 36 hour rest and it was not all good but I am feeling it was a little better today, so I am hoping this is a trend and this burning thing will pass.
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.

Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 2/14/2011 12:54 PM (GMT -6)   
knotreel,

I am 18 months past activation and I still experience a little discomfort, not necessarily on a daily basis, often. I just chalk it up to the equipment not being in the right place when I am sitting or reclining in my chair. It's like a burning sensation in my scrotum. It starts off light and gets more noticeable. It seems to go away once I move or change positions. On a scale of 1 to 10, I'd say by the time I move or change positions, it's registering around a 3. Like I said, nothing major.

As for any pains or discomforts coming from the area of the cuff, I can't really say that I have experienced anything like that.

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 : 3739
   Posted 2/14/2011 1:46 PM (GMT -6)   
Ron
You said "100-150ml and that takes about 10 seconds. I always liked to pee off my back deck which is about 12 feet off the ground and it appears I can come come to shooting it out as far as I could about 15 years ago."

Wow! You are 4x my paltry 300ml in 90 seconds! I have to take a book in with me.
Maybe it will get better over time.

Jeff

Neoman
Regular Member


Date Joined Nov 2010
Total Posts : 192
   Posted 2/14/2011 5:34 PM (GMT -6)   

Ron, right after I was activated, I got a fever like the flu right away. Did not have urination pains though.

 But because it was a new sensation, I knew why I got sick. I just got in bed and through the warm blankets on. That lasted about  3 days and gradually went away. This is a big change in your body.

Hope all goes well. Keep in contact, we want to know what is going on and so on!!

 

Chris (neoman)


knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 2/14/2011 7:43 PM (GMT -6)   
Jeff, ahhh distance and speed nice but dry is better. I'd stick with the slow dry.
Chris, I don't have pain on urination, urination is fine but the burning occurs at odd times not associated with anything that I am doing. I guess your reaction puts mine in perspective, althought the doc said I should not feel anything, It might be reasonable that clamping off the urethra would cause some sensations that were uncomfortable at the least. After all, the doctors don't really know what all this is like unless they have had the same proceedures which probaly none have?
Meantime I'm just keeping my fingers crossed that my new stuff does not get messed 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 @ 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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