AMS 800 about to activate

Hello, I am new to this forum, I am two weeks away from activating my artificial urinary sphincter. I had radiation for prostate cancer 12 years ago and 2 years ago it came back and I had my prostate removed. I have had urethral strictures since I was young and my urethria never healed correctly. I now have a stent in place along with the AMS 800 which was implanted a month ago.

I am wondering what to expect once the device is activated.

I was referred to this website through Neoman and Floridaben as I met them on the bladder cancer website and was told that there will be more patients like me on this site, so hopefully you gentlemen can steer me in the right direction.

Thanks in advance,
Ken

What to expect? Practically anything. Most guys who get the AUS following prostatectomy (and before any radiation) generally have good results. Mine didn't go so well, but it had to be done so that I could proceed with adjuvant radiation. My Urologist said it is better to have it done before radiation. As I understand it is tricky to have it done after radiation.

In my case I was promised a quick and simple procedure. It wasn't, and it had to be replaced within a few weeks, during which time I required a cath. Activation (and radiation) was delayed. Got past all that successfully, so it served its purpose. Sometimes they leak a little. I was using one pad per day. Now that is worsening and I'm using more.

Like practically everything else about cancer, there are those who were successfully treated and everything went smoothly. And then there are the guys who for whatever reason, it seems everything went wrong. That's why I say expect practically anything, especially given your experiences already.

Good luck!

Hi - I hope you had an enjoyable weekend. I just completed writing a long reply to another inquiry about the AUS on another cancer forum. I'll provide the link if that's allowed here (some do not permit cross forum links).

I wore a leg bag for about a year before the AUS. Since you have more bladder involvement than I did, I'm not sure if that is what your doctor is thinking of, or possibly it might be something more like an ileostomy bag. The AUS is certainly better than total incontinence, and it was great to finally get rid of my "bed companion" and all the cumbersome tubing.

I originally came to this forum (HW) because there weren't any guys on the other forum with any knowledge or experience with the AUS. There are in fact more guys here who have the AUS but most of them seemed to have had a much better experience than I did. Plus I have to be kind of careful what I say here because there often seems to be some dispute and lets just say emotional grief.

So you already have the AUS implant and only a one in three chance of it not working. For me it's been a matter of working out the odds ever since all this started, and I don't want to discourage you. So I'll just say I hope it all goes well for you, and may the odds be ever in your favor.

The link is here: Incontinence and AUS experience

I think you will find that using the controls on your AUS becomes second nature in very little time. Most men already use both hands to pee most of the time. One hand is used to manage the zipper, the fly, and the underwear while the other hand is used to retrieve and direct Mr P.

You don't need to squeeze the control bulb while you are peeing. It acts sort of like a leaky suction cup. You give it a squeeze and then let go. The bulb springs back and sucks the water out of the collar around your urethra so you can urinate. The water slowly leaks back into the collar (as it is designed to do) giving you something like 60 seconds to pee. If you're not done you give the bulb another squeeze.

Unless your AUS works unusually well you will probably need a pad inside your tighty-whiteys to catch the occasional drip. This means that for standing-up, clothed micturation the drill will work something like this:

1) Left hand stabilizes waistband and provides access to zipper pull.
2) Right hand opens zipper and draws down elastic on briefs*.
3) Left hand assumes responsibility for elastic, retrieves Mr P, and aims.
4) Right hand thumb slides beneath scrotum and locates the control bulb.
5) Right hand forefinger squeezes the control bulb briefly and releases.
6) Left hand corrects the aim after brief, mild profanities.
7) Moment of bliss.
8) Restore briefs (and pad) to prior positioning and close zipper.
9) Wash hands.

Helpful hint: Buy pants with longer zippers in colors that don't show dark spots for occasional drips.

*Because of the pad any access opening in your briefs is useless.

Timcebu, according to the Dr. the AUS has to be deactivated in order to cathertize, which seems like a fairly easy procedure, but not something that you would want to do often. That is why I had the stent implanted. I was told to get a medical ID bracelet that says "Do not cathertize artificial urinary sphincter".

I will keep you updated on my progress.

My medical alert is one of those laser-engraved dog-tag things I wear on a chain around my neck. It says AMS 800 / Artificial / Urinary Sphincter / No Catheter.

It also says "Allergic Penicillin" but you can probably skip that part... unless you are.

PeterDisAbelard,

I am 11 days away from my AMS 800 activation date. I was amused by your detailed checklist for upright micturition with an AMS 800 implant:

Unless your AUS works unusually well you will probably need a pad inside your tighty-whiteys to catch the occasional drip. This means that for standing-up, clothed micturation the drill will work something like this:
1) Left hand stabilizes waistband and provides access to zipper pull.
2) Right hand opens zipper and draws down elastic on briefs*.
3) Left hand assumes responsibility for elastic, retrieves Mr P, and aims.
4) Right hand thumb slides beneath scrotum and locates the control bulb.
5) Right hand forefinger squeezes the control bulb briefly and releases.
6) Left hand corrects the aim after brief, mild profanities.
7) Moment of bliss.
8) Restore briefs (and pad) to prior positioning and close zipper.
9) Wash hands.

My problem right now is that I am having a great deal of difficulty just grasping the pump in my scrotum. It is very slippery and oriented in an awkward position. Unless I can grow a third hand before activation to secure the pump as I try to squeeze it, I fear that my profanities might exceed the mild level that you suggest in your checklist.

Dino

I still have to grasp the pump by the tubing to hold it still, then squeeze the bottom end of the pump with my other hand. My pump moves around a lot, as I only have one testicle and the pump took the place of the missing one. For the first year I had a lot of tenderness from squeezing my scrotum to prime the pump, due to the number of incisions I'd had down there. Things appear to be settling in though now.

I'm curious... of the AUS guys here, have any had yours replaced yet because of erosion or mechanical failure? Mine was not sized correctly initially and needed immediate revision, but I understand that "we" will be going thru this every 5-10 years for the rest of our lives.

Congratulations timcebu, it's good to hear that everything is working well. I recall there were some concerns regarding strictures and the fact that you had had radiation some time ago. Hopefully your AUS will serve you well over the coming years!