Penile implants and artificial sphincter implants

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Biff
New Member


Date Joined Apr 2006
Total Posts : 13
   Posted 10/4/2007 9:19 PM (GMT -6)   
Okay, any of you guys out there have to get either a penile implant or an artificial sphincter valve put in? I am currently 16 months out after my radical prostate surgery using the robotic divinci last june of 2006. I still have a terrible incontinence issue and E.D. The last visit with my Dr. in Memphis, Tn, he recommended what they call the sphincter 800. Also the penis pump for my E.D. I have tried everything over the last year from Viagra, cialis, Levitra and a few things I can't remember. I currently have a vacuum pump, but use it only for therapy to keep the old blood flowing down there. I read in this forum where some guys have small erections after surgery and they are worried about it. Man, what I'd give to even be able to go to the bathroom and not have to pop it out far enough to get hold of it just to pee. It looks like I have another belly button down there. No kidding!! I use the vacuum pump daily just to make myself feel better. Also, I highly recommend the vacuum pump for blood flow therapy. My Dr. did not do this. I had to find out on my own. I wish I had it way back last year. Have only had it for about 6 weeks now and I can tell it has helped. Also, I have tried the keegles in every shape, form and fashion and it hasn't helped me at all. They have even scoped me to look at my sphincter and it looks ok, but just not working right. I am at my last resort. I thought I'd get on here to see if anyone else has had either one to help me make up my mind, after all, my surgery is scheduled for November 19th. I am 53 years old and hope to get back to some kind of normal life. Any help from anybody would be greatly appreciated.
 
Thanks, and may God bless
Biff

lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 686
   Posted 10/4/2007 10:29 PM (GMT -6)   

Biff

I can't help you with the continence problems.  I have had ED problems and I am now able to have an erection using injections. 

If you are having some success with a pump, then it is likely that injections will work for you.  If you haven't already done so, discuss injections with your doctor.


 
Biopsy 10/16/06
T2A,  PSA 4.7
Gleason 4+4=8 right side
adrenocarcinoma of prostate
DaVinci Surgery 01/16/07
Post op report,confirms Gleason4+4=8
no extra extension/invasion identified
age 65
no continence problems
Back on the golf course...
90 day PSA  less than 0.01 (undetectable)
Six Month PSA still undetectable
ED problems- 20mcg Caverject and 50mg Viagra-success
 
 
 


Berb
Regular Member


Date Joined Mar 2007
Total Posts : 93
   Posted 10/5/2007 4:52 AM (GMT -6)   

Biff,

I'm also interested in learning about the artificial sphincter. Hagrid has had one fitted - see thread

http://www.healingwell.com/community/default.aspx?f=35&m=904253

 

posting on this thread: Reason for my continued incontinence: "Stricture" Started by Jefner

I would be interested in hearing what you think after it is done. Like you, despite kegaling in all its various forms, I've had little if any progress with my continence recovery in the 9 months since surgery, and my doctor's recommendation is for the artificial sphincter. I want to give it longer however before taking the plunge.

Here are some of the websites on the 800 I've looked up in my research so far.

http://www.emedicine.com/med/topic3019.htm


http://content.karger.com/ProdukteDB/produkte.asp?Doi=56548


http://www.bladder-control-forum.com/cgi-bin/forum/topic_show.pl?tid=209


http://www.icsoffice.org/publications/2000/Read/STRESS%20INCONTINENCE/388.htm

 

*Click here for direct link to: European Urology – Reflections on a New Artificial Urinary Sphincter

*Click  for direct link to: Artificial urinary sphincter for post-radical prostatectomy urinary incontinence: long-term subjective results. 

 

(links were long …throwing off formatting)



Berb


59 years old
Da Vinci surgery Jan 10, 2007, nerves spared, no cancer detected outside prostate
Pre surgery PSA 8, Gleeson 3+4=7, T1C, 3 out of 12 biopsies had cancer
Complication 1: urine favoured drain tube over catheter, extra time in hospital, catheter in for 2 weeks
Complication 2 - urinary tract infection - Citrobacter (hospital bug), 6 weeks antibiotics cleared up
Complication 3 - fungal growth on genitals (candida albicans) probably from antibiotics
Post surgery PSA tests: all undetectable
Incontinence (as at Aug'07): no pad changes at night, 8 pads per day, diagnosed bladder neck stenosis

 

Post edited to activate links and correct formatting…

Post Edited By Moderator (bluebird) : 10/5/2007 9:55:12 AM (GMT-6)


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 10/5/2007 9:39 AM (GMT -6)   
Biff,

I am 11 months post surgery and I am fully continent but uisng injections for ED. My urologist told me in our discussion of the potential side effects before surgery if I had ED and it lasted past two years then we will talk about the possibility of penile implants.

Tamu
Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07
Began injections in April '07
Undetectable PSA on 6/25/07


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/5/2007 11:00 AM (GMT -6)   
Hey ~ Guys, I just found

National Association for Continence
(formerly, Help for Incontinent People)
P.O. Box 8310, Spartanburg, SC 29306-8310
864-579-7900
800-252-3337

This may be a duplicate!!

:) Lee

kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 10/5/2007 6:20 PM (GMT -6)   
Hey Guys....another leaker here almost 1 year post op and using 5+ pads a day. I will continue with my Bio-Feedback therapist as long as she keeps seeing some gain on the program she uses. I also use a pocket calendar to keep track of my pad usage. That way I can acutally see if things are slowly getting better.
My Second Opinion Dr. has also recomended the AUS 800. But waiting a while before I give in....if I have to!

The only good thing is the erections are back with the use of Viagra or Cialis. Have even had some "morinig surprises without the drugs.

Try to stay positive....at least most of us are not still fighting the cancer.
Leaking can't kill you!

Good Luck,,,,,KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
   


Hagrid
Regular Member


Date Joined Sep 2007
Total Posts : 60
   Posted 10/5/2007 11:26 PM (GMT -6)   

Hello Biff,

Sorry I'm late in responding.

Yes, I had both procedures done, both at the same time.  The change has been extremely positive.  Don't expect to gain another 6 inches.  Doesn't quite work that way.  But I am now dry, and can get a very satisfying erection, for myself and my Angel.

I tried Muse, injections, the pump, and Viagra.  Had the most success with the pump and Viagra, but the loss of spontinaity was a big detracter.

Pros:  DRY,  DRY,  DRY!!!  Erections are firm, and will last as long as you'd like.  Otherwisey, I hardly even know they're there.

Cons: Takes practice to learn to use each, but you learn, and becomes natural.  I have experienced some pain, although I am told this is quite rare.  Before I learned that turning off my artificial urinary sphincter (AUS) when the pain starts, I had some excruciating times.  Pains were far worse at first, and have gotten less nad managable after a while.  Again, that is NOT the norm.  Unfortunately, since my problem was unheard of, the doctor who performed the procedure was not much help.  I have heard of the chance of failure of the devices, but I've had mine and used them for 4 years with no problems.

If you want to be dry, and all other methods have failed, I would strongly suggest the AUS.  If you want an erection without the shots, the pain of Muse, the expense and waiting of Viagra and Cialis, or the work of a pump, consider the penile implant.
 
Want to regain as close to a "normal" life as possible?  Consider both.  Knowing the outcome, I'd not hesitate.
 
I'll be glad to answer any questions you have.



Age: 57 (49 when diagnosed)
PSA 100+ 3/1999
Biopsy -positive, both nodes 03/1999
Bone Scan and CAT scan negative 4/1999
Radical prostatectomy and bladder neck removed 04/19/1999
HT - 05/1999 (Lupron every 3 months for 9 months)
RT - 6/1999
PSA 0.0-0.2 until 2001
Casodex 150mg 2001 until 2006
Casodex 100mg 2006-present
PSA 0.4-0.6 2001-2007
 


Biff
New Member


Date Joined Apr 2006
Total Posts : 13
   Posted 10/9/2007 8:27 PM (GMT -6)   
Thanks a bunch Hagrid, and all the other members who answered my questions. You all have been a fantastic help!! Sorry it has taken me several days to get back on here, but I have been pretty busy and haven"t felt like getting on this computer. I thought I was to be notified of an answer through this web site, via e-mail of any answers, but I guess not. Thought I"d get on here and look. I was surprised of the response. The AUS they were going to give me has two donuts on it, as the Dr. said I have an active lifestyle and that would be more apt to fix my leakage. Hagrid, does yours have the two donuts? Also, you speak of not gaining six inches, HA!, I"d just like to get back what I had! Did it help you in that department? Mine seems to have shrunk, and I do mean shrunk!! I have to pop it out, like a belly button, just to get hold of it!! I never had that problem before. I use to have a pulling sensation, but since using the manual pump, don"t feel that any more. The muse burned sooo bad, it would change your mind. It didn"t do anything for me at all. The viagra helps a little with the pump. Just doesn"t take as long to get it up. I lose everything as soon as I remove it. It just ain"t for me. How does it feel to have two valves in your scrotum. I heard it somewhere that it took a while to get use to the valve down there, and now I"m fixing to get two. Tamu, sounds like you have my first Doctor. He wanted to wait two years before an implant. My other Dr. said one year. My surgeon was Dr. Donato in Memphis, Tn. No way I could wait two years, even though I"m at 16 months now. If you have to wait, do whatever it takes to keep that blood flowing. That old saying, 'If you don"t use it, you lose it', is so true.
Thanks again everyone, Biff

Hagrid
Regular Member


Date Joined Sep 2007
Total Posts : 60
   Posted 10/9/2007 9:12 PM (GMT -6)   
Mine only has one donut. I know of one fellow who still had some leakage with just one, so his doctor went back in and installed another. My single one works fine. Other than that, I have the same device your doctor is recommending to you. It seems to be the "gold standard".

As far as shrinkage, I experienced some. I suspect it has to do with the loss of nerves, and not removed tissue. The implant does help retain some size, even when deflated, so it might help in that regard. And you can always partially inflate it. No problem doing that. That alone should help you.

If you have both the implant and the AUS, as I do, you have two valves (actually pumps+small valves) in your strotum. Yes, it all fits nicely. After the swelling goes down, you will hardly notice. They do take some practice to learn how to use, but it comes easy.

I tried all the options before going the AUS and implant route. Tried catheter and injections for the incontinence, tried Muse, injections, Viagra and a pump for the ED. The only thing I had any minimal success with was pump+Viagra. I agree about the Muse. Don't know how anyone stand it.

Knowing what I know now, I'm confident and VERY happy with my decision.

Any more questions?
Age: 57 (49 when diagnosed)
PSA 100+ 3/1999
Biopsy -positive, both nodes 03/1999
Bone Scan and CAT scan negative 4/1999
Radical prostatectomy and bladder neck removed 04/19/1999
HT - 05/1999 (Lupron every 3 months for 9 months)
RT - 6/1999
PSA 0.0-0.2 until 2001
Casodex 150mg 2001 until 2006
Casodex 100mg 2006-present
PSA 0.4-0.6 2001-2007
 


Berb
Regular Member


Date Joined Mar 2007
Total Posts : 93
   Posted 10/10/2007 4:29 AM (GMT -6)   
Hagrid,

I'm definitely considering the artificial sphincter, but just not yet. I want to give my body every chance to come good on its own before I take action which is irreversible.

I've been experimenting with a penis clamp over the last few weeks. I've tried both the Dribblestopper and the Squeezerclip. One thing I have found is that once I get 3 or 4 oz of urine in the bladder, it becomes a painful at the clamp point on the urethra and I have to urinate frequently to relieve this. Do you get any sensation at all like this with the atrificial sphincter? Can you hold a normal amount of urine in the bladder before you need to release it?

I've also found with the clamp that if I want to completely avoid urine loss I have to tighten it to the point where it is just too uncomfortable, so I tolerate a small amount of loss into a pad when I cough or do something similar that increases abdominal pressure. Has this been your experience with the sphincter? Do you wear a pad?

Berb
59 years old
Da Vinci surgery Jan 10, 2007, nerves spared, no cancer detected outside prostate
Pre surgery PSA 8, Gleeson 3+4=7, T1C, 3 out of 12 biopsies had cancer
Complication 1: urine favoured drain tube over catheter, extra time in hospital, catheter in for 2 weeks
Complication 2 - urinary tract infection - Citrobacter (hospital bug), 6 weeks antibiotics cleared up
Complication 3 - fungal growth on genitals (candida albicans) probably from antibiotics
Post surgery PSA tests: all undetectable
Incontinence (as at Aug'07): no pad changes at night, 8 pads per day, diagnosed bladder neck stenosis


Hagrid
Regular Member


Date Joined Sep 2007
Total Posts : 60
   Posted 10/10/2007 9:30 AM (GMT -6)   
I waited 4 years before I got my AUS. Looking back, I wish I had done it sooner. I would have missed numerous accidents, lots of inconveniences, and saved a lot of money on pads. But I understand your reluctance. If not for my Angel, I might never have done it myself. It is a big step, and lots of unknowns. That's one of the reasons I am being so open here, to let others have more information to make a better decision for themselves. And I understand wanting to exhaust all options first. But in the end, undoubtedly, it was the best answer for me. It has eliminated overwhelming worry, embarrassment, and has given me back the freedom I used to have. And I can't begin to tell you how the penile implant has improved our lives.

I have never experienced any kind of pain due to a full bladder. None. And yes, I can hold a normal amount of urine in my bladder. I do wear a pad, more for insurance than an actual need. Usually I have nothing, or only a few drops all day. I attribute most that to when I'm in too much of a hurry after urinating to fully empty my bladder and wait the 30 seconds or so for the AUS to completely close. MY bad.
Age: 57 (49 when diagnosed)
PSA 100+ 3/1999
Biopsy -positive, both nodes 03/1999
Bone Scan and CAT scan negative 4/1999
Radical prostatectomy and bladder neck removed 04/19/1999
HT - 05/1999 (Lupron every 3 months for 9 months)
RT - 6/1999
PSA 0.0-0.2 until 2001
Casodex 150mg 2001 until 2006
Casodex 100mg 2006-present
PSA 0.4-0.6 2001-2007
 


Biff
New Member


Date Joined Apr 2006
Total Posts : 13
   Posted 10/10/2007 12:13 PM (GMT -6)   
Thanks Hagrid, I couldn't even imagine going four years the way I am now. My hats off to you. Berb had a good question on the amount of urine you can hold. My Dr. told me that I have to get in the habit of emptying my bladder, say, every two hours or so. Thanks again for your help and I will check back from time to time on this site for other members on their inputs.

Biff
age 54
surgery 6-6-2006

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 11/19/2007 8:18 PM (GMT -6)   
sad  Biff...  Haven't heard from you. Please let us know how you're doing... Okay!! yeah
 
Partial quote from above… 1st posting in this thread.
Biff said… …my surgery is scheduled for November 19th

 

 

Hey ~ Biff,

 

Thinking of you and wanted you to know!!!

Our thoughts and prayers are with you...

 

 

“Our hands will be on your shoulders”

special words borrowed from hamala

 

 

 

~~*~~*~~*~~~)*&^%  Group Hug %^&*(~~~*~~*~~*~~

 

From the 3 of us...

Lee, Buddy, & Murphy


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 11/22/2007 12:23 AM (GMT -6)   
  sad  Biff...  Haven't heard from you.
                                         
Partial quote from 1st posting in this thread.
Biff said… my surgery is scheduled for November 19th
                                                     Please let us know how you're doing... Okay!!  yeah   

 

Hey ~ Biff,

 

Thinking of you and wanted you to know!!!

Our thoughts and prayers are with you...

 

 

“Our hands will be on your shoulders”

special words borrowed from hamala

 

 

 

~~*~~*~~*~~~)*&^%  Group Hug %^&*(~~~*~~*~~*~~

 

From the 3 of us...

Lee, Buddy, & Murphy


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 11/22/2007 7:01 PM (GMT -6)   
Berb said...
I've been experimenting with a penis clamp over the last few weeks. I've tried both the Dribblestopper and the Squeezerclip. One thing I have found is that once I get 3 or 4 oz of urine in the bladder, it becomes a painful at the clamp point on the urethra and I have to urinate frequently to relieve this


Hi Berb,

I'm curious about your experiences with different clamps. I am using the one that the doc just precsribed, it's the Bard Cunningham Penis Clamp. It's crude, but effective. I wonder if I can find something a little more comfortable. Can you give me an evaluation of the products you have tried?

Thanks
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing
Diagnosed with "stricture" as the cause of incontinence 8/30/07
Sept 2007 3-5 pads/day
Stricture treated by progressive dilation on 10/17/2007
No change in continence, stream was improved
Bladder neck incision on Oct. 30
Cath removed on November 6
November 12: no change in continence, follow up with surgeon, he prescribes clamp


Berb
Regular Member


Date Joined Mar 2007
Total Posts : 93
   Posted 11/24/2007 2:34 PM (GMT -6)   
Hi Jefnef,

I don't use the clamps on a daily basis any more. While I enjoy the sense of normalcy that the clamp brings, the discomfort eventually got the better of me. This occurs when the pressure builds up against the clamp point on the penis with a relatively small amount of urine in the bladder, requiring frequent releases. I still have to wear a pad with them, although this lasts much longer. I can tighten the clip so that it restricts all flow during running and coughing, but it hurts too much. If I loosen it, I get leakage under stress.

I've also had occasions when the clip has slipped off. This does not happen when standing or walking, but if I sit upright and forward with my legs together, or lean over to pick something up off the floor, the penis retracts inside the body enough to pull it back against the clamp that is resting on the thighs. If the clamp is tight, pain results. If it is a bit too loose, it can slip over the penis head with embarrassing results.

Both Dribblestopper and Squeezerclip were equally effective in doing what they do. The Squeezerklip is a little longer which is a bit of a disadvantage when running because I feel it touching my thighs as I move my legs. Not a serious problem though. I do like the softer foam of the Squeezerklip, and the adjustment screw.

Dribblestopper supplies 2 clips for around the same price as the 1 Squeezerklip. That gave me the ability to take the knife to one of them to find a more comfortable adjustment. I found that the widest setting was still too tight. I eventually replaced the foam on the bottom arm with a piece of foam from one of those blue sleeping mat that you buy in outdoor shops. This improved the comfort, but it only lasts a day before it is too compressed. It is very easy to change it because I just hold it on with a small piece of Micropore paper tape on each end.

While I have reverted to pads for normal activity, I continue to use the Dribblestopper for special occasions. I recently used it while running a marathon, with just a small half pad in front. This pad lasted the whole distance. It was soaked through, but that wasn't a problem in an event where everyone is wet and sweaty anyway. I think the warm weather evaporated enough of the excess to keep it in equilibrium. The downside however was that I had to stop and urinate every 15 minutes or so to relieve the pressure at the clamp point. I have become quick at this; using light nylon shorts with elastic jocks inside you can do the business against a tree in around 30 seconds. So on balance, the clamp was better for this than having to carry and deal with 6-8 pads along the way.

Hope this helps.

Berb
59 years old
Da Vinci surgery Jan 10, 2007, nerves spared, no cancer detected outside prostate
Pre surgery PSA 8, Gleeson 3+4=7, T1C, 3 out of 12 biopsies had cancer
Complication 1: urine favoured drain tube over catheter, extra time in hospital, catheter in for 2 weeks
Complication 2 - urinary tract infection - Citrobacter (hospital bug), 6 weeks antibiotics cleared up
Complication 3 - fungal growth on genitals (candida albicans) probably from antibiotics
Post surgery PSA tests: all undetectable
Incontinence (as at Aug'07): no pad changes at night, 8 pads per day, diagnosed bladder neck stenosis


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 11/30/2007 7:36 AM (GMT -6)   
Berb,

Thanks for the info. My experience with the Bard clamp is similar to yours. It's not the most comfortable solution, but it's generally effective.

I admire you for your courage in not letting this problem keep you from your normal activities. Kudos!
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing
Diagnosed with "stricture" as the cause of incontinence 8/30/07
Sept 2007 3-5 pads/day
Stricture treated by progressive dilation on 10/17/2007
No change in continence, stream was improved
Bladder neck incision on Oct. 30
Cath removed on November 6
November 12: no change in continence, follow up with surgeon, he prescribes clamp


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 1/22/2008 11:54 PM (GMT -6)   

For Member Information:

 

re: (AUS) Artificial Urinary Sphincter

 

Information from Ann....

 

Jim is a professional individual who is willing to talk with anyone in reference to his procedure and his life with an AUS.  Please contact bluebird for their telephone number

You will need to leave a phone number for him to return your call due to his schedule.  His call back to you is covered in his calling plan (no charge for him)…

 

So ~ please …. Reach out to someone who’s willing to talk with you.

 

Jim’s surgeon:

 

Dr. George D. Webster

Professor of Urologic Surgery in the Department of Surgery

Link:

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 5/2/2008 8:58 PM (GMT -6)   

Partial Quote from Biff posted on this thread…> Artificial Sphincter started by zebbiedog

Take care everyone and let me hear from anyone who needs advise on this. Bluebird, thanks for the help in the past and hope everyone is well. 

Biff

 

 

  tongue    Hey ~ Biff,

 

We are thrilled to hear from you!!!  Your words above brought happy tears and a warm smile to my face….  Thank you!

 

Your journey is too important not to be here… so I’m adding updates from other member’s threads…  You sound great!  Thank you so much for staying in touch... it's important for you and for "all of us".... Friends Care!!! 

Hugs from Lee & Buddy

 

Biff’s Quote taken from Artificial Sphincter started by zebbiedog

May 1, 2008 

 

Hello everybody, this is Biff and yes I am still around. I haven't been on the forum in some time, as I have been trying to see how everything was going to turn out for me. Those of you who do not know me, I was diagnosed with prostate cancer back in 2006. I had my surgery in 2006 and have been screwed up since. My incontinence was terrible and I have done more keegles than Kelloggs has cornflakes. I had the artificial sphincter 800, I think it is called, with the double cuffs, as I am 54 years young with an active life. (use to be active life) LOL!! Dr. Pearson activated the sphincter and the penile pump, yes I had that done at the same time, in December of last year. My incontinence is better than it was, but I am still leaking just enough that I still have to wear a male guard. Let me say that I am not leaking very much, but I feel that everything I have been thru, I shouldn't have to wear a pad at all!!  That is my goal. I don't like wearing underwear, yea I love just hanging loose, and flopping around. It's is a man thing, you know? I feel like I'm wearing a jockey strap when I'm wearing underwear! Oh well, we got through that. Now for the penile implant!! I would like to hear from anyone who has one. I don't think they are all they are cracked up to be. When he activated it, I pumped it up till it hurt, and I looked like I had shrunk up to about half of what I had!! I told my Dr. that I was bigger when I was 13 years old!! LOL!! He kind of snickered but when he looked at my face he could tell that I was not joking and was serious as hell!!  He said to work with it and to come back to see him in a month. I did, (worked with it) for the next month, and stayed in the bathroom more than I ever have just pumping away!! I have managed to go from 9 pumps to 13 (painful!!!) pumps!!  But I still am not what I use to be!!  Mind me, I am not or have I ever been a John Holmes (deep throat), but was very happy with what I had!! To catch everybody up, I did use a penile pump ( one of those things that has a plastic tube that you stick your little stump in and pump the suction to it hoping to get an erection).

Yea, I have one of those and used it every day to keep the blood flow to my penis (Pee-wee) , as my wife and I call it now. So the Dr. cannot say that it is because it has not been stretched lately. I used that thing every day and probably stretched  it to lengths I never have been!!! I just pray it will get better. If only I could get to the size it was at that last stretching!!?? No kidding everyone, I try to laugh at myself, as it keeps me going, so just try to bear with me. For you guys who are contemplating on an artificial sphincter, I would do that one again, because I believe it will get better. There is a little valve, about the size of my little finger, in my scrotum sack, that I have to squeeze to urinate. I have it down pat to the sense that I have been at a public restroom and used the stand-up urinal and no-one knew that I had the prosthesis. It is very easy to use. You can even pump it twice to increase the stream if you have to go bad, and yes I still have that feeling that I need to go. They said in the begining that you have to remember to empty your bladder every two hours or so, but, I feel just the way I did before. I have that gotta go feeling and go to the bathroom and squeeze that button and OOOHHH, what a relief it issss!!!!  So do not hesitate if the Dr. says that is what you need. I have the two valves in my sack

and it does feel a little crowded down there at times. It just does not feel natural to me to feel the things. On my right is the penile pump and the left is the sphincter. Take care everyone and let me hear from anyone who needs advise on this. Bluebird, thanks for the help in the past and hope everyone is well. Gotta go!!1 Now let me see, is it the left or the right???????????????????

 

Biff

I had to just get on here again. This is Biff and gene I hope everything goes well with you. I had my surgery last November and had everything activated last december. Let me tell you, after the surgery, I did hurt like hell. It was hard for me to get in and out of bed. The Dr. implanted the two devices through my scrotum. he made an incision at the base of my shaft and in the scrotum. he took the cathedar out the next day and sent me home on the third day. I was up and walking on that third day, very slowly I might say. It isn't anything you can't handle. Just remember the final outcome, which is where you want to be. I would like to talk to someone else who has had the penile pump. I just am not that happy with mine so far. maybe I will be after a year or so. My wife and I have only had sex about three times since activation and I have experienced some pain each time. It just seems that it is sore when I pump it up. I guess I am looking for big results that are just not happening right now. No kidding, I use to have 7 and 3/4 inches before and now can barely get 6 out of it. OK everybody, stop laughing, but step into my shoes for a while. I get tired of hearing, you are alive!!, be happy!!!, so what??!!!!. I want at least what I had. The Dr. said, no pain, no gain, so I guess I will have pain for a while. I have been pumping it every day till it hurts. I don't know what my future holds for me but it has to get better. Just hang in there and let me know how your surgery goes. My e-mail is (edit).   Hughes has been working trying to upgrade our e-mail service about the last 5 days and I have not been able to receive or send mail, but it should be working in a few more days. Take care.

Biff

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Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 5/3/2008 8:35 AM (GMT -6)   
Thanks Mama for bumping these posts. I had searched for these but could not find them, even with the search option.  I was not looking back far enough. Gene214

Radical open removal 2-14-07
Removal of stricture 6-07
Bio-feedback (4) 08-07
Scheduled for AUS & implant 05-08
63 years old at time of nerve-sparing surgery


lil'D.Erwin
New Member


Date Joined May 2008
Total Posts : 1
   Posted 5/11/2008 12:59 PM (GMT -6)   
Guys,
 
Read everyone's comments and I think I'm in the right place!  Had my prostate removed 3+ years ago the old fashined way and although PSAs have been good to date I'm still suffering side effects with incontenence and ED.  The former is my biggest concern at this point.  If I don't drink coffee, exercise, play golf, walk any distance, or have more that two cocktails I generally leak less than a few oz. per day.  Even successfully gone camando (nervously) a half dozen times.  The problem is I enjoy doing all of these things so I'm a pad+ when I do.  I'm thinkin' my best option is the artificial sphincter since the Kagels don't work (I can now easily crack a coconut squeezing my thieghs together).  The slings don't offer the odds I'm looking for.  
 
Moving along to the ED - with Levitra I'm about 75% but leak urine during the act.  Kind of ruines the moment!  
 
I'd appreciate hearing your views!
 
lil'D.Erwin  

DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 5/11/2008 2:44 PM (GMT -6)   

lil'D.Erwin,

My urologist suggested the following for urine leakage while erect:

1. No fluids within two hours of erection.

2. Pee before erection.

3. Try an Actis Flow Controller.  Although designed for ED, this reusable, adjustable constriction ring helps block the urethra and therefore stops or limits urine flow.

4. Wear a condom if all else fails.


Danman Bob, Born 1951
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14; Biopsy result - 9 of 12 sticks showed cancer
Post-op pathology stated that cancer was confined to the prostate
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of late April 2008)
100 MG Viagra 3 times a week beginning December 2007
Osbon Erec-Aid Esteem manual pump for therapy beginning mid-February 2008
30 MG papaverine/1 MG phentolamine bimix injections beginning late April 2008
Five week post-op PSA 0.2, five month post-op PSA 0.1, next test August 2008


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 5/11/2008 9:59 PM (GMT -6)   
Hey. Lil D
  You are much further along in time...but leak alot less than me.  With that small ammount of leaking I would talk to some Doctors about the Ad Vance Male sling.  It might be the right fix for you without all the "plumbing" of the AUS.  My sling did not work at all but I was leakin a great deal more than you.
    I will soon begin talkin to a couple of Doctors to decide which one will do my AUS.
 
    Good Luck.  KW
 
    43 at Dx and Surgery
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 4th, 2008 - Appointment with Original Dr. to discuss options and recomendation for surgical fix for incontinance.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 15, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
 
     


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 6/15/2008 8:10 PM (GMT -6)   

Since I am back on schedule for the AUS/IPP (inflatable penile prothesis), I wanted to bump this back up to keep the issue current.  Perhaps others have received these devices and would comment. 

Gene214


Radical open removal 2-14-07, Gleason 3+3=6
Removal of stricture 6-07, incontinence continues
Bio-feedback (4) 08-07 (no improvement)
Scheduled for AUS & implant 05-08
Surgeon cancelled one day pre-surgery, due to cardiac concerns
Nuclear stress 5/13/08
3 stents 5/27
AUS, IPP scheduled 7-08
63 years old at time of nerve-sparing surgery


leaky
New Member


Date Joined Mar 2008
Total Posts : 15
   Posted 6/15/2008 10:37 PM (GMT -6)   
Hello Lil D.Erwin,

The AMS 800 or AUS is referred to as "the gold standard' but in my opinion should be viewed as a last resort. Your leak problem is such that you should be a suitable candidate for the Advance Sling. It works best for guys that use 1 or 2 pads/day. I had it installed in March and my leak was reduced by half, but I was a 6pad/day case. And I was 4+ years from surgery date. I've read about guys leaking at your rate even after the AUS so it is not a guarantee. If you get a sling and aren't satisfied, the AUS can then be installed.

You asked for an opinion and now you have mine, hope it helps.

Leaky
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