Penile implants and artificial sphincter implants

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

Biff,

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

https://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.

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

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.

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?

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.

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

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!

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          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 Contact Moderators for e-mail address if not activated by member... ( Edit e-mail, name, and/or telephone# ) Click on link and Refresh …once page is opened.     **** E-Mail Addresses for Members Only (Masking for Security)  

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

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

 

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

BE ADVISED THAT THE SPHINCTER 800 DIDN'T WORK FOR ME TWICE. THE FIRST SURGERY 3/31/08 I GOT A SINGLE CUFF AND MISTERIOUSLY THE CUFF WAS WORN AND NEVER WORKED FROM DAY ONE OF ACTIVATION. SECOND SURGERY WAS 8/14/08 REPLACED WORN CUFF AND ADDED A SECOND CUFF AND SINCE IT WAS ACTIVATED STILL DOES NOT WORK WHAT A DISAPPOINTMENT I'M STILL INCONTINENT. THE CO. IS AMS OUTOF MN.

THE INJECTION WORKS VERY WELL FOR ED THERE ARE TWO KINDS

ONE HAS TO BE REFRIGERATED AND ONE DOES NOT. I HAVE A GREAT PARTNER THAT'S ALWAYS THERE FOR ME.

I SUGGEST YOU ASK YOUR DR. THE SUCESS RATE AND GO FOR THE TWO CUFFS FIRST TO AVOID TWO SURGERIES AND OF CAUSE

CHECK OUT YOUR DR.

                                   GREG

LET ME KNOW HOW YOU MAKE OUT AND FEEL FREE TO E-MAIL ME

WITH ANY QUESTIONS THAT I CAN HELP YOU WITH.