AMS 800 artificial urinary sphincter

Zegoli

DB78602 said:

AMS800
Yeah saw him last week. The follow up was good,PSA test was undetectable. We talked some more about the AMS800. Think I will go ahead with it later this year once the insurance deductable is taken care of for the year but thats another story. In the mean time I did start using a Acticuf clamp. http://www.acticuf.com/index.php
It works ok but would not want to wear it more then about six hours then everything gets pretty tender. But at least I am able to work and play golf without having to run to the restroom every hour or less to change a pad.

Dennis

Acticuf clamp
Good tip, Dennis.
I didn't know about it, gonna request a sample. It mat be useful till the waiting for the AUS is done.

Zegoli

Trew said:

I have found that a good
I have found that a good postal scale is the way to keep track of leakage. You can deduct the weight of the pad and just measure actual urine in the pad. right now I am leaking around 10 oz a day with variations running between 8- 12 or as high as 15 oz. But this gives me a better idea what I am dealing iwth. I reord it all in a pad diary and take it in to the uro when I go. She finds it very helpful.

Self-cath started after an or procedure to remove and cut scar tissue. On Sept 1 I stated cath 2x a day thrugh jan1.

Jan 1x a day. Feb every other day, and for march I am now at once every 3rd day and April will be once every 5 or 6 days. I see the uro at U of MI on May 9 ( I know these appintments like I know Xmas!)and thenI expect to get a date for the AUS. I can hardly wait. Well, no, I ca't wait, that has been the problem.

I confided in a long distance freind the problem I was having and told me 'why don't you just go to the toilet more often?" which indicates many may have no idea what incontinence is. I only wish it could be solved so easily as going to the toilet more often.

May 9 is the date. I get scoped to see if all is clear and then, I hope I can get this all done by June.

Hopes
Have been reading your posts, see that you made great progress.
I also hope to get this all done by June, for both of us.

DB78602

Zegoli said:

Acticuf clamp
Good tip, Dennis.
I didn't know about it, gonna request a sample. It mat be useful till the waiting for the AUS is done.

Not something I want to use
Not something I want to use long term but works for now.

Zegoli

Trew said:

Still Waiting.....
I am seeing Dr. Latini at the U of MI. She is waiting for scar tissue to settle down and the bladder neck to stablize. Until then I just wait and use up my supply of pads. I see Dr. Latini again on Jan 3. Until then......

So it goes.

Sensibility
When I implanted the rigid prosthesis, there was a 50% loss of sensations in my penis, mostly on the middle section, a bit not so much in the glans. I keep wondering if the AUS will bring any further loss.

ob66

Zegoli said:

Pleasure and Incontinence
Like Dennis said, “you guys have given me a vast amount of information, thanks!”. Awfully helpful. But I do have a new topic I’d like to discuss.

I have a mild urinary incontinence, just one pad a day suffices. And no need to wear one for sleeping. Seems like heaven? But I’m seriously considering an AUS – you wanna know why? Because nowadays I’m single.

From what I’ve gathered, men have three urinary sphincters – the prostate, one leading out of the bladder, and a third at the base of the pelvis, just behind the scrotum. My first two were sacrificed, what gives me control is the third one (plus some muscle pressure ). But this 3rd one is supposed to let go on pleasurable states, like sexual release. Furthermore, the bladder is supposed to contract when everything else relaxes. That’s all involuntary, regulated by the autonomous nervous system.

So, the better I get, lesser control I have whenever I get minimally excited. It wasn’t always so. My post-op when I got a penile implant (rigid type) was awful for over two months, and for 5 months I was so traumatized that I never fully relaxed. Which meant absolutely no leaks at all, I thought I was cured from incontinence. Until one day I had an erotic fantasy while going to work and ended up with a 10 inch blotch in my pants. I had finally come out of a permanent tensioned state and back to loss of control.
Now, how can I flirt if becoming interested is enough to make me squirt? Emptying my bladder first is not enough (and I passed that horrible urodynamic testing), the minimum residue in the bladder suffices for pad overflow. And such flirting situations are usually unexpected. Quite embarrassing!

When I had a partner, incontinence was bothersome during sex, but it was far more manageable, things could be planned for minimum mess, the surprise factor was somewhat under control. But even then, having control even (and specially) when naked would be great! But now that I’m single, I’m really looking forward to the AUS benefits. It replaces the sphincters I lost, liberating the one I still have from improper stress.

Since none of you mentioned this question before, I thought, well this talk may be a bit intimate for a list. Or perhaps for those of you that have a heavy incontinence there are just other priorities bothering you. Just in case any of you’d prefer talking about it in private, you can reach me at zegoli@gmail.com . No trouble for me though, I can be straightforward about it.

I have found you
I have found you Zegoli, and will respond. Unfortunately for me, my nerves could not be spared when I had my daVinci, so I do not have your problem. Damn! I nevertheless think I can help. One aspect of the AUS that you may discuss extensively with your doctor prior to it's being done, is the tubing with regards to fitting on installation. I can feel my tubing mostly at the base of the penis where it comes up to the holding tank in your abdomen above your penis, from the activating device. I think that could be avoided were you measured very carefully, and your doctor was fully aware of your need for comfortable sexual activity. Other than that my device works tremendously, and I would not want to be without it. Hope this helps.

ob66

Zegoli said:

Pleasure and Incontinence
Like Dennis said, “you guys have given me a vast amount of information, thanks!”. Awfully helpful. But I do have a new topic I’d like to discuss.

I have a mild urinary incontinence, just one pad a day suffices. And no need to wear one for sleeping. Seems like heaven? But I’m seriously considering an AUS – you wanna know why? Because nowadays I’m single.

From what I’ve gathered, men have three urinary sphincters – the prostate, one leading out of the bladder, and a third at the base of the pelvis, just behind the scrotum. My first two were sacrificed, what gives me control is the third one (plus some muscle pressure ). But this 3rd one is supposed to let go on pleasurable states, like sexual release. Furthermore, the bladder is supposed to contract when everything else relaxes. That’s all involuntary, regulated by the autonomous nervous system.

So, the better I get, lesser control I have whenever I get minimally excited. It wasn’t always so. My post-op when I got a penile implant (rigid type) was awful for over two months, and for 5 months I was so traumatized that I never fully relaxed. Which meant absolutely no leaks at all, I thought I was cured from incontinence. Until one day I had an erotic fantasy while going to work and ended up with a 10 inch blotch in my pants. I had finally come out of a permanent tensioned state and back to loss of control.
Now, how can I flirt if becoming interested is enough to make me squirt? Emptying my bladder first is not enough (and I passed that horrible urodynamic testing), the minimum residue in the bladder suffices for pad overflow. And such flirting situations are usually unexpected. Quite embarrassing!

When I had a partner, incontinence was bothersome during sex, but it was far more manageable, things could be planned for minimum mess, the surprise factor was somewhat under control. But even then, having control even (and specially) when naked would be great! But now that I’m single, I’m really looking forward to the AUS benefits. It replaces the sphincters I lost, liberating the one I still have from improper stress.

Since none of you mentioned this question before, I thought, well this talk may be a bit intimate for a list. Or perhaps for those of you that have a heavy incontinence there are just other priorities bothering you. Just in case any of you’d prefer talking about it in private, you can reach me at zegoli@gmail.com . No trouble for me though, I can be straightforward about it.

I have found you
I have found you Zegoli, and will respond. Unfortunately for me, my nerves could not be spared when I had my daVinci, so I do not have your problem. Damn! I nevertheless think I can help. One aspect of the AUS that you may discuss extensively with your doctor prior to it's being done, is the tubing with regards to fitting on installation. I can feel my tubing mostly at the base of the penis where it comes up to the holding tank in your abdomen above your penis, from the activating device. I think that could be avoided were you measured very carefully, and your doctor was fully aware of your need for comfortable sexual activity. Other than that my device works tremendously, and I would not want to be without it. Hope this helps.

Zegoli

ob66 said:

I have found you
I have found you Zegoli, and will respond. Unfortunately for me, my nerves could not be spared when I had my daVinci, so I do not have your problem. Damn! I nevertheless think I can help. One aspect of the AUS that you may discuss extensively with your doctor prior to it's being done, is the tubing with regards to fitting on installation. I can feel my tubing mostly at the base of the penis where it comes up to the holding tank in your abdomen above your penis, from the activating device. I think that could be avoided were you measured very carefully, and your doctor was fully aware of your need for comfortable sexual activity. Other than that my device works tremendously, and I would not want to be without it. Hope this helps.

One of my nerves was surely
One of my nerves was surely sacrificed and possibly the other one too. Anyway, the radiotherapy messed up whatever might have been left, thats what made me face the penile implant.
I just could't quite understand which of the problems I brought up you were referring to when you mentioned the sacrifice.
But your advice on being careful with the measurement is quite helpful, thanks.

survivor 1

Skid Row Tom said:

AUS info
I've had the AUS since spring of 2007. After activation, the number of times I urinated during the day were "normal". Sometimes I have to get up once a night, but oftentimes I don't have to pee during the night. I'm wondering if you're experiencing bladder spasms. The AUS shouldn't make you pee any more or any less. Hopefully, your bladder will settle down. You may want to ask the doctor abvout things to avoid until it settles down -- alcohol, caffeine, etc.

Hi tom, i just wanted to let
Hi tom, i just wanted to let you know that after reading your posts about the artificial sphinter i felt alot better about getting it done. Like you i have had 11 cystos and 3 surgerys. My ams was implanted on jan 10th 2011, was activated on feb 21 gave me my life back, but i did have a question for you or anyone else that may be reading this. Did you have pain or buring on the head of the penis for a time after and before the sphinter? I feel like it is from sitting in urine most of the time and it has rubbed it raw even though there is no apparent sign of it being red. I went through 12 to 14 pads a day and now only because I sneeze or cough do I ever leak..if anyone is having second thoughts please don't it's well worth the unconfortable part of the operation and healing.

Zegoli

survivor 1 said:

Hi tom, i just wanted to let
Hi tom, i just wanted to let you know that after reading your posts about the artificial sphinter i felt alot better about getting it done. Like you i have had 11 cystos and 3 surgerys. My ams was implanted on jan 10th 2011, was activated on feb 21 gave me my life back, but i did have a question for you or anyone else that may be reading this. Did you have pain or buring on the head of the penis for a time after and before the sphinter? I feel like it is from sitting in urine most of the time and it has rubbed it raw even though there is no apparent sign of it being red. I went through 12 to 14 pads a day and now only because I sneeze or cough do I ever leak..if anyone is having second thoughts please don't it's well worth the unconfortable part of the operation and healing.

Burning head
I've yet to implant the sphincter, but have no burning or pain in the glans. But then, my incontinence is minor (most of the time), so I get no rash.
Thanks for the fillip!

chickinvasion

Trew said:

OK, What IF.......
Now I am starting to play mind games with myself about having a AUS installed, such a, What IF some one tied you to a tree and left you (like a robber)? My wife says, "Like how often has that happened?" But there are other supposes that could happen, a fall on the trail and you are left unconscious for hours. Then your bladder would explode.

Silly stuff like that enters my mind.

There is a 10- 20% failure rate- and I have been moving in on the wrong side of those perscentages since starting this whole cancer thingie.

So what if.......

And can they install this device in females and if so, where do they have the activation button? This inquiring mind wants to know.

Answers to Trew's What Ifs and more
Failure Rate: If the AUS fails to give real control, the Dr can adjust it in an outpatient procedure where they replace the reservoir (the little bulb in the abdomen that causes the pressure on the AUS cuff) with a different one that creates more pressure. I have read so many sites where someone speaks of the AUS failures. I have read sites where they (the medicals) say, effectively, "too bad, so sad" and cite failure rates.
My husband got the AUS last November (after the cruise and train trip, if you remember my post), Thank you for the advice. Anyway, there was so much scar tissue from radiation that the healing took 12 weeks, instead of 6.
A month after activation, it still is not OK. But the Dr is scheduling the procedure to increase pressure/effectiveness. So we still have hope. I asked if this is a one time guess or does he have multiple grades of pressure to offer.
:-)

In the meantime, we now know (since the scar tissue is dealt with) that the scar tissue is what caused his chronic infections

As well, you had wondered if females can have an AUS. I have a student who would benefit, a little girl with only one kidney and significant other malformations, who has to catheterize every 4 hours for the rest of her life. So I asked the Dr. No, females do not have enough length to the urethra.
But here's to inquiring minds!

Old-timer

survivor 1 said:

Hi tom, i just wanted to let
Hi tom, i just wanted to let you know that after reading your posts about the artificial sphinter i felt alot better about getting it done. Like you i have had 11 cystos and 3 surgerys. My ams was implanted on jan 10th 2011, was activated on feb 21 gave me my life back, but i did have a question for you or anyone else that may be reading this. Did you have pain or buring on the head of the penis for a time after and before the sphinter? I feel like it is from sitting in urine most of the time and it has rubbed it raw even though there is no apparent sign of it being red. I went through 12 to 14 pads a day and now only because I sneeze or cough do I ever leak..if anyone is having second thoughts please don't it's well worth the unconfortable part of the operation and healing.

Plans for AMS 800
I am new at this. So this, my first message,is more experiment than knowing what I am doing. I am only a five-pad-a-day person, but, in answer to your question, I have not experienced any burning or redness. Forgive my rambling.

My urologist has recommended that I have the AMS 800 implanted. Based partly on what you folks are saying, I am seriously considering her recommendation. But I need some answers to a few questions before I decide. You and others have explained what to expect during and after this procedure very well. But not one of you has memtioned age. Do you know or have you heard anybody say that age should be a factor to consider when deciding whether to implant the AMS 800? Should us "old guys" give it a try? Any thoughts about this?

guards

Old-timer said:

Plans for AMS 800
I am new at this. So this, my first message,is more experiment than knowing what I am doing. I am only a five-pad-a-day person, but, in answer to your question, I have not experienced any burning or redness. Forgive my rambling.

My urologist has recommended that I have the AMS 800 implanted. Based partly on what you folks are saying, I am seriously considering her recommendation. But I need some answers to a few questions before I decide. You and others have explained what to expect during and after this procedure very well. But not one of you has memtioned age. Do you know or have you heard anybody say that age should be a factor to consider when deciding whether to implant the AMS 800? Should us "old guys" give it a try? Any thoughts about this?

age
Old timer welcome to the board. I am 67 and just completed my 800 9 weeks ago and if it fails at 77 ill have another installed . The ability to function in normal situations is priceless it gave me back my life. if it failed at 69 id get another lol.

Zegoli

DB78602 said:

AMS800
All, after finding this site and reading the posts i think there is finaly hope for all of the leakage problems that I have been having since surgery. Tom your ordeal sounds a lot like I have have gone through the last year. I have had a number of issues of scar tissue after surgery that required trips to the ER to be catheterized. Self catheterization would not get past the scaring. Finally had to be dilated as Tom discribed to a "french 22" that has finally cleared the scar tissue but seems to cause a major loss of control. going through 10 to 12 pads a day. I am OK sitting but if I am standing or walking there is almost no control and kiegal is not working. I resently moved to the Austin area and the Urologist here told me about the AMS unit. I am scheduled to see him again in Feb. and thinking about scheduling the implant.

You guys have given me a vast amount of information, thanks

Postponing surgery
After consulting 3 more different urologists, I´ve decided to postpone the AMS800 surgery, and give a try to some urophysiotherapy and perhaps medication to control a hyperactive bladder. Let's see if a few months treatment will bring favorable results.

Zegoli

Zegoli said:

Sensibility
When I implanted the rigid prosthesis, there was a 50% loss of sensations in my penis, mostly on the middle section, a bit not so much in the glans. I keep wondering if the AUS will bring any further loss.

Postponing surgery
After consulting 3 more different urologists, I´ve decided to postpone the AMS800 surgery, and give a try to some urophysiotherapy and perhaps medication to control a hyperactive bladder. Let's see if a few months treatment will bring favorable results.

Zegoli

Zegoli said:

Postponing surgery
After consulting 3 more different urologists, I´ve decided to postpone the AMS800 surgery, and give a try to some urophysiotherapy and perhaps medication to control a hyperactive bladder. Let's see if a few months treatment will bring favorable results.

A little progress
Seems I've got a quite hyperactive bladder, but my sphincter muscles are doing fairly well. I've been receiving some electrical stimulation in physiotherapy. It's applied on the right ankle, and is supposed to go up the Autonomic Nervous System and reach the bladder. Just a few applications and the number of times I peed a day dropped below 50%. Then I started taking Enablex, but after a week I have made no further advances.
I'm getting better on what had been manageable, but no progress on what really bothers me - lack of control on pleasurable situations.

lion1

Zegoli said:

A little progress
Seems I've got a quite hyperactive bladder, but my sphincter muscles are doing fairly well. I've been receiving some electrical stimulation in physiotherapy. It's applied on the right ankle, and is supposed to go up the Autonomic Nervous System and reach the bladder. Just a few applications and the number of times I peed a day dropped below 50%. Then I started taking Enablex, but after a week I have made no further advances.
I'm getting better on what had been manageable, but no progress on what really bothers me - lack of control on pleasurable situations.

Progress
Zegoli,

Are you saying that you continue to see significant progress with your Electro-therapy(Ankle needle)? I am curious because I postponed my Interstim inplant for a few months. It's like a pacemaker but whether it will work is 50/50 like everything else.


Lion1

Zegoli

lion1 said:

Progress
Zegoli,

Are you saying that you continue to see significant progress with your Electro-therapy(Ankle needle)? I am curious because I postponed my Interstim inplant for a few months. It's like a pacemaker but whether it will work is 50/50 like everything else.


Lion1

Still little progress
After a few months of eletrostimulation + biofeedback + Enablex I made very little further progress. Now I am trying eletrostimulation on a daily basis, instead of twice a week.

Next step would be some Botox injection on the bladder, every 3 months, for at leat one year.

Seems the AMS800 is not a good option for me, since I have a strongly hyperactive bladder (and a good sphincter control).

tdorman

hightide said:

Conitnuing progress
Trew, I will post my progress as often as I can. I sure am glad I found this forum and I hope some of the guys that have had this for a while and any that are further along than I am will answer some of the questions that come up now and then. I had my DiVinci done by Dr. Randy Fagin with the Urology Team in Austin Texas. I was almost dry until the radiation therapy, then the the wet season came and was not getting better. Went back to the Urology Team and had the implants put in by Dr. Bryan Kansas. This team is a great bunch of urologists (five men & two women)each with a special area of intrest. I think Dr. Fagin was number eight in the country on DiVinci back in 2007 when he did mine. Last month Dr. Kansas put both of my implants in at Saint Davids outpatient surg. center. He started at 9:00 am and I was back at the hotel at 3:30 pm. Went to his office on Thur.(the day after surgery) and left for home on Fri. (Home is eleven hours away). Dr. Kansas called and got my local urologist to just check me two weeks post op and also set up for him to activate the implants Aug. 11. Now I am just in a holding pattern and have not had any problems (knock on wood) so far.

AUS after radiation
My Uro tells me the AUS will not last as long when implanted after radiation? Maybe 4 or 5 years. I had a RP in 1996, then IMRT in 2003. Anyone have any experience with this or told differently by your Uro?

Rembrant

harvs said:

AMS 800 artificial urinary sphincter
I've had mine for almost 3 years. One of the best moves I've made. Couldn't live without it.

Artificial Urinary Sphincter
Hello harvs,
I see your last post was in March of 2010 and I'm hoping you are still happy with your AMS800. I'm considering having the surgery and wanted to communicate with someone who had the surgery.
I had prostate cancer and surgery three years ago, and my incontinence never improved. I go through 8-10 soaked pads a day and I tried all of the following: Physical therapy, cytoscopy, biofeedback, Kegels, exercise = no improvement and no obstructions.

I'm concerned I might not be able to ride my motorcycle or bicycle after this surgery but
so frustrated with the incontinence I am willing to go for it. I would love to be able to communicate with you or anyone else you might know of or other online support groups for AUS. I know there must be others who have had this surgery but can't find them in online support groups. You are the first person I have come across. Would so appreciate hearing from you.

Thanks for any help you can provide.
Rembrant

PeteHigg

Rembrant said:

Artificial Urinary Sphincter
Hello harvs,
I see your last post was in March of 2010 and I'm hoping you are still happy with your AMS800. I'm considering having the surgery and wanted to communicate with someone who had the surgery.
I had prostate cancer and surgery three years ago, and my incontinence never improved. I go through 8-10 soaked pads a day and I tried all of the following: Physical therapy, cytoscopy, biofeedback, Kegels, exercise = no improvement and no obstructions.

I'm concerned I might not be able to ride my motorcycle or bicycle after this surgery but
so frustrated with the incontinence I am willing to go for it. I would love to be able to communicate with you or anyone else you might know of or other online support groups for AUS. I know there must be others who have had this surgery but can't find them in online support groups. You are the first person I have come across. Would so appreciate hearing from you.

Thanks for any help you can provide.
Rembrant

Any additional info
Hello Rembrant,
I have been examined by 3 urologists & all agree that my only option to gain continence after PC surgery (1 1/2 yrs ago) is the AUS. I've visited Cleveland Clinic & am on their list for future surgery, if I elect to do so. I've asked locally but cannot locate any men who've had (or will discuss) this implant surgery. The only info I've located is this web blog but would like more current discussion. Have you had any luck in finding information? Have you had the surgery? I would appreciate a reply or you may contact me at redhouse77@aol.com. Any discussion would be greatly appreciated.
PeteHigg