CSN Login
Members Online: 8

Artificial Urinary Sphincter Implant (AMS 800) -- help!!!

skoehler123
Posts: 5
Joined: Feb 2013

Seeking Others to Discuss Their Experience w/ AUS Implant (AMS 800):

I am inquiring for my father-in-law (fil) who has limited internet access. He is 63, prostate removed 13 months ago, now suffering from incontinence. Received 2nd opinion yesterday from Mayo and was told he had 2 options: 1) status-quo -- it won't get better over time, or 2) AMS 800 Implant. 

As you can imagine, he's feeling anxious about option #2. I am seeking any and all who can provide feedback about your experience (pre and post surgery). 

Some concerns: 1) Life post implant, 2) Infections common, 3) Reputable docs/hospital to perform procedure, 4) any other options, 5) life span of implant, 6) physical limitation post implant, 7) anything else you believe will be helpful making a decision.

Your input is greatly appreciated. My fil knows there are 1000s of men who've had this procedure, but sort of lost regarding how to connect with you all. Please help. We greatly appreciate your time and consideration.

Take care!

 

Trew
Posts: 892
Joined: Jan 2010

Incontinence is not way for any man to live.  My AUS 800 isn't a perfect solution.  There are certain positions, activies that will pressure the AUS to allow leakage at time.  Example for me:   bike riding- I will always have to change underwear after a 5- 10 mile bike run- even a short ride I will leak.  Just getting on my bike will almost always give me a little squirt of urine- but I am workig on  how I sit on the bike- helps some.  And when I backpack sitting on the ground seems to at times trigger some leakage.

 

But life with the AUS is a 100 times better than 8- 12 pads a day, leakage arund the pads, wet pants at times, etc, etc.  A good doctor whto has done many AUS surgeries at a good hospital should do just fine for your dad.  And even if the AUS doesn't take which happens sometimes- its well wortht he try.

 

 

skoehler123
Posts: 5
Joined: Feb 2013

Trew:

 

How long ago did you have the impant?  

 

My father in law does some biking and is active on a farm too -- tractors, mowers, etc.  So, I imagine he will have a similar experience as you.  I agree, that sure seems way better than the pads.

 

On a related note, I am a road bicyclist and wondered if you've ever considered riding a recumbent  or one of the fast trikes they make these days.  In both, you'd sit with much less pressure directly downward.  I have a CaTrike brand that I purchased due to lower back issues.  So, I know from sitting in that, there is much less pressure vs a road bike.  Just a thought.

 

I appreciate you comments above too.  Take care.

Trew
Posts: 892
Joined: Jan 2010

My AUS was installed at the U of MI hospital on Aug 23, 2011.  So this August will be my  2 yr anniversay.  First real positive after that nasty PSA test that started all the trouble.

I should look into a recumbent bike but I enjoy off road biking a lot.  You are the 2nd person to recommend one. maybe that is what I need, or at least take a look at one.

If your father would be interested in talking to me on the phone about the AUS I would do that. 

-Trew

 

 

 

 

Trew
Posts: 892
Joined: Jan 2010

My AUS was installed at the U of MI hospital on Aug 23, 2011.  So this August will be my  2 yr anniversay.  First real positive after that nasty PSA test that started all the trouble.

I should look into a recumbent bike but I enjoy off road biking a lot.  You are the 2nd person to recommend one. maybe that is what I need, or at least take a look at one.

If your father would be interested in talking to me on the phone about the AUS I would do that. 

-Trew

 

 

 

 

skoehler123
Posts: 5
Joined: Feb 2013

Trew:

Thanks again for the update / info.  I understand about the off-roading stuff...fun.  However, my lower back can't take much of that, although the Minnesota pot holes can be a "road" challenge!

I think he would like to talk to you.  I live in Minneapolis and he's in rural IA.  They have limited dial-up internet, so can be frustrating for them doing a lot of online research.  If the offer to talk via phone is still open, that would be great.

Take care and I appreciate you following up.

Scott

Trew
Posts: 892
Joined: Jan 2010

I sent you a private message with my phone number.  Your dad can call me if he wants.  I can discuss the AUS with him.

For me, the incontinence was so inconvienent and embrassing I would have settled for almost any option.  I guess some men are more accepting of the condition than others.  I just know I had pretty much reached my tolerance level and incontinence was making life so miserable for me I wanted a way out.  I looked at the AUS surgery joyfully as a way out of a terrible place in my life.  I have always been pretty active and incontinence was making me into an armchair recluse and I hated evey minute of it, I hated every pad, every wet spot on my pants from leakage, the problem with bed wetting.....  I was starting to even hate life.  I needed a change.  for me I think the AUS was a life saver.  Really.  I do not think I would have lived with that condition indefinitely.

 

 

 

 

skoehler123
Posts: 5
Joined: Feb 2013

I received your private message with a phone number.  My FIL has that information...he's processing everything I've sent to him.  I sure hope he calls you.

 

I can't even imagine what you've gone through.  I am glad the surgery has given your life back.

 

Thanks for the information.

ob66
Posts: 217
Joined: Apr 2010

What he sez is right on. Hard chairs, and bike seats can activate the AUS, but it is NOTHING compared to incontinence.

Trew
Posts: 892
Joined: Jan 2010

Ob66 and those of of us who have the AUS installed probably all have anxiety issues about the AUS surgery but looking back the surgery wasn't nearly as bad as anticipated and the freedom from incontinence on this side of the surgery was well worth the surgery.

 

And like my wife says,  women have babies....

 

No need to share the rest but it had something to do with pain, exposure, etc.

Trew
Posts: 892
Joined: Jan 2010

Somehow I made a double post.

 

 

 

 

PPdoc
Posts: 2
Joined: Mar 2013

The main question is how incontinent is he.  Consider discussing a Virtue male sling with your doctor as a first step before an AUS.

The virtue Male sling can be very effective. In patients with 1-3 pads per day (PPd) full continence can be achieved. In those patient with more than 3 ppd, "social continence" can be achieved. Best of all you dont burn any bridges. The AUS can still be implanted if significant incontinence persists.  In those cases that require an AUS after a Virtue male sling I do a penoscrotal approach and often times will place a penile prosthesis at the same time. 

He is 63 years old, I am sure he would like to regain his sexual function as well.  If he decides to have the AUS consider having a double implant (AUS and penile prosthesis) at the same time. The recovery from each procedure can be brutal with significant amount of pain and discomfort for the first 3 weeks. By having a double implant it will spare him a sinificant amount of discomfort and pain since he will be recovering from both procedures at the same time.

Hope this helps. 

PPdoc
Posts: 2
Joined: Mar 2013

The main question is how incontinent is he. Consider discussing a Virtue male sling with your doctor as a first step before an AUS.

The virtue Male sling can be very effective. In patients with 1-3 pads per day (PPd) full continence can be achieved. In those patient with more than 3 ppd, "social continence" can be achieved. Best of all you dont burn any bridges. The AUS can still be implanted if significant incontinence persists. In those cases that require an AUS after a Virtue male sling I do a penoscrotal approach and often times will place a penile prosthesis at the same time.

He is 63 years old, I am sure he would like to regain his sexual function as well. If he decides to have the AUS consider having a double implant (AUS and penile prosthesis) at the same time. The recovery from each procedure can be brutal with significant amount of pain and discomfort for the first 3 weeks. By having a double implant it will spare him a sinificant amount of discomfort and pain since he will be recovering from both procedures at the same time.

http://www.hindawi.com/journals/au/2011/178312/

Hope this helps

yankeefan
Posts: 69
Joined: Mar 2013

I'm sorry, but how does impotence relate to incontinence? It seems you think they go together, do they?

LeRoy W
Posts: 3
Joined: Mar 2013

I was scheduled to have the AMS800 implant surgery on Feb 25, 2013.  On Feb 15, 2013 I was called that the implant was on recall, and surgery was cancelled .    There was a pump problem.  Does anybody know anything about the recall or how long it may be before it is available.  I can't  get through to the company, they don't reply.

Trew
Posts: 892
Joined: Jan 2010

Interesting.  I had to wait 1 yr before my doc would do my AUS.  She was heavy into scar control.  During that time the AUS was put on hold while some problem was worked out.  The device went off recall just a month or so before my 1 yr was up and I was scheduled for surgery.  The doctor who did my surgery told me she had never seen a problem with the device.

So good men with a serious problem were put on hold while more testing was done.  If the device is on recall and they want mine back they will have to take it by force. 

 

JUMBO JIMBO
Posts: 2
Joined: Aug 2012

TREW -

 

I AM SERIOUSLY CONSIDERING THE AMS 800 UCS.  IS THIS THE MODEL YOU HAVE?  I HAVE SEEN YOUR COMMENTS NUMEROUS TIMES ON THIS WEBSITE AND YOU SEEM VERY SATISFIED WITH YOURS.  NOW I SEE THAT IT IS RECALLED?  DO YOU KNOW ANYTHING FURTHER ABOUT THIS?  I HAVE BEEN INCONTINENT FOR APP. 1 1/2 YEARS( FOLLOWING PROSTATECTOMY) - USING APP. 6 PADS PER DAY.  I'M LOOKING FOR EXPERIENCES (GOOD AND BAD) FROM PEOPLE WHO HAVE HAD THE IMPLANT AND WOULD APPRECIATE ANY FEEDBACK YOU CAN PROVIDE.

 

THANKS

JUMBO JIMBO 

ob66
Posts: 217
Joined: Apr 2010

     Jumbo Jimbo.....Have had my AMS800 for 2 years, 11 months and it is wonderful....No complaints, no problems, biggest worry is that someday it may wear out from use.....Now, I have read about the recalls, and I think you need to do your research here, but all I can tell you is that my experience has been nothing short of wonderful....Find out how real the recall is, and if you are not convinced it is a definite problem, go ahead with it.....I remember couselling Trew, prior to his going through same, and all you need to do is read the threads of his malaise prior to having same done....He seems a new person, far from the depressed wretch he was before the AMS surgery.....The surgery is no fun, but time cures all wounds, and you will be so thankful....Obviously I have had no "recallable" problems, so I really can't speak to that....Best of luck.....One and a half years of incontinence is a sentence from hell in itself....

dogbone1953's picture
dogbone1953
Posts: 1
Joined: Apr 2013

I am new here as you can see from my posting but I have been reading alot of your post. I had robotic surgery in 2009 for prostate cancer. It had escaped the capsule and so I had radiation in 2010. Have been incontinate from the start after surgery, 4 - 5 pads a day. In 2012 had the male sling installed, 3 months to the day they removed the male sling, Rubbing the bladder causing an infection. Now I am totaly incontenate, wear tenna underware, and tryed pads with that, changing every 2 hours. I am a pipefitter at work and this was not working out being wet all he time and welding really don't go together, I am sure you get the picture. I now use an extrenal cathadure and collection bag to make it thru the day. This has been working well for me but still not free. I want to be dry, panty liner dry would be great. I have been back to my dr.  and I plan on have the AUS insalled on june 12 20013. I just had scar tissue removed and was dialated three weeks ago. All looks good to go now, But would like some feed back from users that have the AUS and how life has changed for you. I am starting to become a hermit and I love the outdoors. I am willing to give up my bike if that is what it takes to be dry, and even my motorcycle if that is what it takes. Any info on what I can expect after surgery would be great. Thanks guys and my bashfullnes when out with the first surgery so don't hold back. Sorry about the spelling. Thanks again for your time,

Paul

LeRoy W
Posts: 3
Joined: Mar 2013

I was notified by my Dr. office the device was recalled.  That was Feb 15, 2013.  At the beginning of April,  I called the company,  American Medical Systems, Mn,  and they  said the pump  was repaired/redesigned and now  needed approval from the Food and Drug Administration before they will be available again.   They have no idea when that will happen.

LeRoy W
Posts: 3
Joined: Mar 2013

The Recall of the AMS 800 implant is over.  The implant is now available.  It had been off the market for about 3 months.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network