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AMS 800 artificial urinary sphincter

Trew
Posts: 920
Joined: Jan 2010

One of many links with a diagram showing the device:

http://www.phoenix5.org/Basics/treatsides/incontinence/ams800.html

Is this the best device now available?

Best place to have this procedure done?

Interviews RE the artificial sphincter:

http://www.delawareurologic.com/audio/#video

I have a good friend who had bladder reconstruction after bladder cancer and he may be interested in one. Hey, some of us PC guys might be interested in one, too, so add as much info as you can about "Control Issues."

Josephg
Posts: 229
Joined: Jan 2013

I've had the AMS 800 implant for over 4 years, and I've flown several times during this period, without any issues.  The AMS 800 operates, using a pressure differential between the pre-pressurized saline solution contained in the implant, and the surrounding ambient air pressure.  The 'closed' state is actually at the pre-pressurized pressure of the implant in the cuff, and when you want to open the cuff to urinate, the pump actually reduces the pressure in the cuff, moving the saline solution back into the bulb reservoir, reducing the 'squeeze' or the urethra, thus allowing urine to flow out of the bladder.

Dino_F's picture
Dino_F
Posts: 14
Joined: Mar 2018

Next week I will be taking my first flight with my AMS 800 implant.  I am curious to know if the implant ever creates problems when passing through a metal detector or full body scanner.  Please let me know your experiences.

RobLee's picture
RobLee
Posts: 261
Joined: Feb 2017

Only once. The full body scanner detected something unusual in my groin and they pulled me aside for additional screening, but no strip search, and they did not seem even interested in my explanation  No problems ever with metal detectors. 

dadspet
Posts: 4
Joined: Mar 2017

Since my Dr said no Condom  catheters (or NO clamp for sure) until after the AMS800 is activated  (8 wks in my case due to radiation damage requiring long healing period ) I've been very concerned and again questioned him why not? His answer the first time was he was concerned about backflow ( which I guess is the urine not flowing into the drainage bag, due to a kink or some other issue, and backing up into the surgery areas ?) and then a possible infections. This time he said he didn't want anything to disrupt the healing process and he had a previous patient who used a condom catheter and had to have the AMS800 replaced in a very short period of time before the recovery period was over. This is a major concern of mine and I probably will address this with him again next week as we finalize test results before the procedure the week after.  The major concern in my case has been bladder cancer and reoccurrence so I've just gone thru another cysto and bladder biopsies along with a ct scan and tomorrow a ultra sound of my kidneys and more blood work. I am so sick of all the time I've spent getting tests  but I think I'm at a point if all tests are ok I plan on going thru with it. Not a easy decision for me and I may change my mind before its over. I hope  on updating the BB on my progress. 

RobLee's picture
RobLee
Posts: 261
Joined: Feb 2017

Thank you Dadspet for the updated info on the AUS and condom caths. First, let me wish you good luck with your upcoming procedures...  I have relied heavily upon condom cath's since my RP surgery last summer. And now my incontinence is so severe that it has delayed the start of the radiation therapy that originally was to start this month.  Your doctor's concerns sound legitimate, so perhaps I may need to alter my practices a bit after having the AMS800 implanted.  My doctor has advised that the AUS should be implanted before starting radiation, so the healing time (plus additional healing time if any revisions are necessary) will also delay the start of my RT. It sounds like you've been thru quite an ordeal already. Do I understand correctly that you will have the AMS800 implanted in two weeks? You are definitely right, this in NOT an easy decision. There's a lot that can go wrong, and though most men seem to be happy with the outcome, once it's done it's done and we can only hope for a favorable outcome.

dadspet
Posts: 4
Joined: Mar 2017

Planned AUS implant was first week in April but Dr called me yesterday saying cytology showed some concern and now wants Moffit Cancer Center review of cytology prior to additional testing. I guess the bottom line here is that going into an AUS implant (especially when one has External beam radiation + Seeds and BCG infusions)  requires a fair amount of testing to ensure there are no other issues. 

RobLee's picture
RobLee
Posts: 261
Joined: Feb 2017

Sorry to hear about the complications and it certainly sounds like you have a lot going on. Good luck with the Moffitt review (that will bring down into my neck of the woods). It looks like quite possibly I may end up getting the AUS before you do!  I see my RO again in two weeks to work out the RT schedule, and the AUS right now is scheduled for mid May... hoping I will be sifficiently healed and able to travel by the end of June and possibly start RT in the fall, or maybe postpone it til early next year, if the Lupron can keep my PSA down.

I know you have a lot more going on, and at our age it's never just one thing. More like you gotta line up the ducks and hope one doesn't fall before its turn and mess up the whole parade.

 

DianeC926's picture
DianeC926
Posts: 2
Joined: Mar 2017

My 88 year old dad decided to do this surgery without confiding in me. Of course the device failed and he is beside himself, what's worse is that he has put a call into the doctor twice now to find out what had happened and what can be done but low and behold, no answer back. My heart breaks first of all that any doctor would do this surgery on an 88 year old man with this kind of risk failure just so he can hold his penis when going to the bathroom a few more years is beyond me, really doc? Needless to say my dad wants it removed as he says its uncomfortable when sitting down but would have lived with this device inside had it worked, I am obviously trying to convince him into leaving it in rather risk going under again, is this wrong of me?

Does anyone know the success rate on this, especially in an 88 year old man? The doctor not calling back has me suspicious as well, would this be considered malpractice? 

I can't say I am happy about this and I am trying to help my dad now in any way I can. I would so appreciate the help if someone has any suggestions on how to further help my dad.

Thanks so much

Diane

RobLee's picture
RobLee
Posts: 261
Joined: Feb 2017

Call the doctor, repeatedly. Make a personal visit if you need to. From what I've read, most recipients of this device are happy with the outcome, however there is a 1 in 4 possibility that revision surgery may be necessary. Typically this is to resize or reposition one or more of the components. Actual mechanical faliure does occur but is uncommon. Your father's doctor should stand by his work, in fact, should have advised him of that possibility beforehand. Legal recourse is always a possibility but your court case would likely outlive your father.

 

Grinder
Posts: 457
Joined: Mar 2017

Sorry I can't give you any advice about the device, but I can offer some empathy. My father was 90 when we took him to the hospital with liver failure. The doctors at Methodist hospital told us that they could put him through various procedures and medications, but it wouldn't stop his advancing organ failure. It would make what time he had left very uncomfortable and probably wouldn't gain him any extra time. We were grateful for their honesty... He passed away a few months later at home surrounded by his family and the Medicare provided hospice worker helped us to make him as comfortable as possible. 

I hope you get this situation resolved soon. Is there any way to check on surgeon's reputations in your area? Surgeon's Scorecard is a website that tracks success rate of doctors and hospitals, and it covers a wide variety of operations, but I don't know if surgery to implant that device is covered, but you can check for a more accomplished surgeon in your area by consulting that website. Its web address is posted in the prostate cancer forum just a few days ago. That is assuming you cannot contact your first surgeon.RobLee is right... You never know what might be going on in his situation either, my own doctor was inaccessible for a while, and then I found out later from her busy staff that she had her own emergency operation to contend with. But if he is actually avoiding you I would contact a surgeon in your area with a good record. Hoping for the best for you and your father. I know its tough.

cancerjhw's picture
cancerjhw
Posts: 1
Joined: Sep 2017

After having my prostate removed there was some cancer left, so had to have 40 radiation treatments. I had no pain or other issues with the radiation, but the surgery left me with incontinence which is very difficult to live with! This nightmare started about three years ago (2014) when the VA gave me some PSA tests. It takes a few of these to be sure of cancer, plus a biopsy, etc. I'll just say in closing that all is apparently well now (2017). I found a great product that really helped my leakage called MEN'S LIBERTY. It's an EXTERNAL catheter with a small urine bag and attaches to the penis with a special adhesive. The VA pays for this (about $300 per month). Regular insurance should also cover this for non-military personnel. Oddly, insurance (Medicaid in my case) doesn't pay for pads or diapers, but they do cover MEN'S LIBERTY! I used this great product for about 6 months until recently when I had an artificial sphincter operation using the AMS 800 at the VA. The operation takes only a couple of hours, and I stayed overnight for one night. Four weeks later they turned on the device, and I am now getting used to it. There was only moderate pain for a couple of days, and then it all went away! I hope my little story helps those considering the various options. Good luck!

bwk1414
Posts: 2
Joined: Mar 2018

it does help...i am going in april 23rd for it....have spent a lot of money on depends and pads!

progolf
Posts: 12
Joined: Sep 2014

I know it's after the fact but you could have gotten the pads and underwear from the VA. I get them now. I am thinking about the AMS because the leakage is getting real bad. I'm grateful for this website because all the comments are very helpful for my decision process.

RobLee's picture
RobLee
Posts: 261
Joined: Feb 2017

It is my understanding that they will provide what they have, which is not necessarily what you prefer to use. I looked into getting my prescriptions drugs from the VA but they only had cheap substituses which are in the same drug class. For example, the only PPI they stock is the less effective omeprazole and do not supply the more effective lansoprazole.

I have my annual VA physical next Monday and will ask the doc about getting pads. I assume they will be bulky white ones that bulge in your pants and are noisy when you walk.

A J
Posts: 2
Joined: Nov 2017

Hi Guys:

I'm A J

I wonder if anyone out there is getting bladder spasms. My Devise activated activated 5 weeks ago. I would appreciate your input.

Thanks!

 

 

 

 

tpelle
Posts: 184
Joined: Aug 2003

I had daily spasms for three weeks when the catheter was installed during the Open Prostate Surgery.   Then, no spasms after the first AMS800 installation as well as after the second AMS800 instalation (revision) about 18 months later.  tpelle 

MedicalLabTech's picture
MedicalLabTech
Posts: 1
Joined: Jan 2018

Hi Guys !

I'm new here and my name is Frank.

Had Robotic Radical Prostatectomy in Jan 2014 and have been using pads inside Depends briefs, changing pads on average 3 to 5 times a day, keeping the same briefs throughout the day.

I hate it! Docs are pushing me for the AMS and I've been resisting it until now.

Going to see them in two hours and going to say yes!

But I still enjoy sex using the penile injections.

Can anyone tell me their experience having sex, including climax and ejaculation while having the AMS 800?

Right now, when I come, many times urine (or some liquid) comes out of my penis; anywhere from a few drops to several tablespoons, I guess. Sometimes nothing comes out.

I would not want to ejaculate a few tablespoons if the AMS is in the closed position!

So if I had it implanted, would I open the valve just before I think I'm going to come? Does anyone have actual experience with this?

Any comments or suggestions?

Any other issues pertaining to sexual activity?

Thanks!

jimco236
Posts: 10
Joined: Nov 2012

Just empty your bladder before sex and don't worry about deactivation. You won't hurt anything.

RobLee's picture
RobLee
Posts: 261
Joined: Feb 2017

No. The AUS blocks most everything from coming out of your urethra. As you know, you can not ejactlate after a prostatectomy but can still have an orgasm (I call it a pelvic orgasm). Sometimes some urine leaks past the natural bladder sphincter and is trapped in the urethra between the bladder and the AUS and becomes a little bit pressurized so that as soon as you release the AUS it squirts out. But I don't see how that would interfere with having sex. Also, I never deactivate my AUS.

Dray2
Posts: 3
Joined: Dec 2017

I had my AMS 800 implanted last Friday. Very little pain so far. My biggest concern is what would happen if i had an accident and couldn't communicate about the devise. I'm getting a bracelet, but that might not be found. Would the pressure eventually override the cuff? Or, would serious injury result? Most comments seem to address the issues around a catheter being inserted with the cuff in place. Is that the only concern?

RobLee's picture
RobLee
Posts: 261
Joined: Feb 2017

Some guys get a tattoo over their pubes. I considered that also but my wife, an RN, mentioned that tatts are so commonplace today that emergency personnel might not even notice it. But they do however look for medical alert bracelets and necklaces. I bought several ID bracelets from sporty silicone models to dressy embossed gold, and keep one in the car and more at home near my keys etc.  Get in the habit of wearing one any time you are away from home. My Urologist specifically told me to have it say "Cath Only by Urologist".  Surprisingly, there are many medical professionals who have never heard of an artificial sphincter.

Several scenarios come to mind, one being your own discomfort from not being able to urinate to relieve a bursting bladder. The other is someone trying to cath you while the cuff is in it's normal closed state. This would cause considerable damage to your urethra and possibly also the device. It's not worth the risk. The bracelet is a tremendous inconvenience, but you obviously already recognize the need for one.

Dray2
Posts: 3
Joined: Dec 2017

Thanks RobLee. I think multiple bracelets and necklaces sounds like the best solution.  I sure appreciate being able to benefit from your experience and wisdom.  I saw earlier on this site some suggest verbiage for the bracelet, and will use that as a model unless you have other thoughts.

RobLee's picture
RobLee
Posts: 261
Joined: Feb 2017

Different style bracelets have considerably more or less space for engravings. At a minimum you want it to say "No Cath AUS" or "No Cath AMS800 Implant". 

Some medical professionals may not know what an AUS is (or mistake it for being an "Aussie") but they can look up AMS800 and they all know that IMPLANT means something. In addition I may include "Cath Only By Urologist" and/or the phone number of my doctor, GP or Uro. Also when there is room I also include my full name, my city of residence and my wife's phone number.

Most engravers have a web interface where you can try out various phrasings and see how it will look. It takes some trial and error, but these things typically cost around $30 each and for a couple hundred bucks you can have an assortment of styles and engravings.

I wish there was a better online resource for information on AUS's. Instead we are a but small niche among prostate cancer patients, as well as some with bladder cancer and survivors of various other urinary continence ralated conditions. Mine was not the best experience, but most guys have no trouble with theirs. It sounds like you've had a good experience so far. I don't want to scare anybody, but there are risks associated with the AMS800... but life with a working implant is far better than life without it, for those among us who ended up needing one. Good luck to you going forward!

Trew
Posts: 920
Joined: Jan 2010

I have had my AMS in now for 8 yrs, I think, maybe 7.

 

Some leakage now, and I wear a mini-pad.  1 a day.  I am still concerned about What if something happens, but I do have a medical ID in my wallet next to my medical insurance info.

 

This was more of an issue with me when I first got the AMS installed.  I would sometimes even think what IF I am somehow captured, and tied up, the scenarios just can run wild from there.  

 

But I have no medical bracelet, no tatoo, just the ID card in my wallet.

 

 

bwk1414
Posts: 2
Joined: Mar 2018

hello...i am having the AUS put in april 23....about two years after my prostatectomy.

i have been incontinent to the tune of about 6 pads a day.   i am not happy that i have to do the surgery but my quality of life is definitely compromised.

i have read your comments and are very thankful for somewhere to go to for feedback.

any updates on results would be most appreciated.

thanks

Harrymueller's picture
Harrymueller
Posts: 2
Joined: Jun 2018

I had my aus installed 5 weeks ago and will be activated next Wednesday.  The pump seems to be sitting high in the scrotum. Higher than after surgery. Is this a problem and had anyone else have this happen?

Hi

tpelle
Posts: 184
Joined: Aug 2003

On my first AUS the pump was placed low in the scrotum and that location worked well.  On my second AUS the surgeon placed the pump very high on the right side.  I told her "that won't work" but she told me to tug it down once a day.  The entire pump outline is visable or feelable.  I like this better as the pump is essentially fixed in place, easily found and manipulated.  Hope this helps.

Harrymueller's picture
Harrymueller
Posts: 2
Joined: Jun 2018

 got activated today. Because it was high it was painful activating.  So far today it works

Dino_F's picture
Dino_F
Posts: 14
Joined: Mar 2018

I had my AUS implanted one week ago.  Today was the first time that the soreness and tenderness of my scrotum had diminished enough for me to even attempt to feel around for the pump.  Right now it located very low on the right side and it is turned posteriorly toward the back of the scrotum.  If it stays in that location I would require an awkward two-handed manuever to stabilize and squeeze the pump.  I still have quite a bit of swelling down there and I realize that things will tighten up over the next few weeks.  My surgeon said there would be no need to tug the pump downward during my recovery as others here have mentioned (I asked twice to make sure.)  Will healing eventually lock the pump in a permanent position in the scrotum? Can anyone offer advice on rearranging the angle of the pump during healing so it will be easier for me to locate and squeeze down the line?  

tpelle
Posts: 184
Joined: Aug 2003

Dino:  My first and second pumps both were NOT locked in a fixed position after healing.  I've had to use both hands (fingers) in both cases to grasp and manipulate the pump.  This gets a little tricky because you also have to "point" your member to get the flow into the toilet or urinal and not down your leg.  But, it will be managable regardless of the orientation of the pump.  The biggest concern is worrying about the pump operation while waiting for the activation date.  It will all work out, trust me!  tpelle

RobLee's picture
RobLee
Posts: 261
Joined: Feb 2017

It definitely takes two hands to operate the pump - one to stabilize it by pinching the top where the tubes emerge, and another to squeeze the tip of the pump.  And as mentioned, AIM your stream at the same time.  Usually mine squirts out immediately.  It takes a while to learn how to coordinate everything properly.

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