CSN Login
Members Online: 3

You are here

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.

Greg Maze
Posts: 2
Joined: Jul 2015

Greetings Trew:

Just joined the web site today.  I had my prostate removed over 4 years ago by DaVinci.  I'm another unlucky person as I still battle incontinence big time. I can easily go through 3 Depends diapers in a day and I mean soaked.  I'm over it.  I live in SW Fla and really don't want a Dr. here performing my surgery.  I noticied you went to U of M to have yours done?  I'm actually from Mich and know that U of M is a great medical school.  Can you give me the name of the Dr. that performed your surgery.  I would like to do some home work and ask him some questions?

Thanks,

ob66
Posts: 220
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: 220
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.

bamaboy101
Posts: 1
Joined: Mar 2016

I just had the AMS 800 installed by Dr Arthur Burnett at Johns Hopkins in Baltimore, MD on 2/2/2016.  So far, it has been great for me.  I do have a very light leakage...only a few drops, and I had one time where I accidentally activated the device by sitting across a ridge.  You do have to be conscious about how you sit, etc.  I am 63 years old, had a prostatectomy in Sep 2012.  Many complications...urinary stricture surgery, incontinence (6 pads/day) which led to the AMS 800.  I am happy with the results so far...some other issues, but little by little.  I was a little surprised by the overall cost of the procedure.  I have good private insurance...typically pays 80-85%.  Just received a $24,000 bill from Johns Hopkins, Dr was another $3k and anesthesia another $2k or so.  So far my part has run around $5k out of pocket.

Josephg
Posts: 73
Joined: Jan 2013

Yes, you need to be aware of how you sit and on what you sit on.  Remember where the cuff on the urethra is located (that nasty incision behind your scrotum).

If where/how you sit creates a pressure point in that area, it can compress the cuff and cause some minor leakage.

Hope that this helps.

hap4174
Posts: 5
Joined: Apr 2016

I am in my 13th year dealling with incontinence after prostate surgery. The last 2 years has been much worse (6-8 pads per day). I have considered the AMS 800

since the onset of incontence and recently had the procedure 5 days ago and am very concerned with the outcome. first I noticed a weak stream and trouble empting my bladder. then the swelling began big time and much pain. I was so looking forward to relief but so far it hasn't happened.

Has anyone had any similiar problems.

tpelle
Posts: 167
Joined: Aug 2003

Hap:  Probably the swelling is causing the weak stream.  There is a lot of pain during the first couple of weeks, but it improves gradually.  Be sure you take the pain meds as prescribed.  There won't be any relief from the leakage until the unit is turned on.  For me that was at about the 7th week post surgery.  In the meantime you will still have to deal with leakage but it shouldn't be any more than you experienced before the surgery.  The pain should mostly be gone by the time the unit is activated.  That's been my experience.  tpelle

hap4174
Posts: 5
Joined: Apr 2016

tpelle, thanks for your reply. I think you are right on about the swelling causing the weak stream as the problem has improved as the swelling improved. My doctor didn't warn me about what to expect after surgery so I was very concerned, his reply was oh I've seen much worse which wasn't all that comforting but now that I know I am dealing with it as best I can thanks to a wonderful wife who has been very supportive.

    When did you have the procedure..have you been satisfied with it?

     Hap

tpelle
Posts: 167
Joined: Aug 2003

Hello Hap:  My open radical prostatectomy was in 2003.  During the first ten years I was averaging 2.3 Depends pads per day.  At the end of the ten years I had the AMS 800 implanted.  As like you the biggest concern during the recovery period was not knowing what to expect.  However, several of the guys on this site were most helpful.  After activation, the unit worked beautifully for about 17 months, then failed, and I was back on 2.3 pads per day.  After a month or so I returned to the U.S.Med, Davis Urology Department for help.  The balloon had lost it's charge and the cuff was not closing.  Fifteen months ago the first unit was taken out and replaced.  The doctor discovered that the first balloon had a pin-sized leak and had lost it's fluid.  The new AMS800 has been functioning perfectly for the past thirteen months.  Although the second surgery was more extensive (removing the old and implanting the new), it seemed easier because I knew what to expect.  In a couple months when your AMS 800 is working, you'll feel that the post surgery trauma was worth not having to use pads.  Although, I still do wear a liner as from time to time there is a drip or two when I sit on an irregular surface.  Hope this helps.  I'll respond if you have further questions.  tpelle

hap4174
Posts: 5
Joined: Apr 2016

Hi Tpelle, my aus was activated on May 17 and the device is amazing. I stay completely dry all day and night. Like you I wear a liner which I could get by without.

I wanted to thank you for previous replies..they were very helpful. I still have one problem..The device appears to be causing me some pain and can be very uncomfortable especially if I am on my feet very long. Did you experience this at all? I noticed in your last post your surgery was in 2003. That ws the same year I had mine..April 3 @ 9:00 am to be exact. It is definitely a life changer. It has been more severe for me due to a condition called diabetes Insipidious.  It causes excess urination which complicates an already bad situation.

Thanks again  for your help

Hap

tpelle
Posts: 167
Joined: Aug 2003

Hello Hap.  It's good hearing that you have made substantial progress from those first few days following your AUS800 implant.  Those early days can be trying. My prostatectomy was on the first Thursday of 2003.  Was in the hospital for two nights.

I do have some pain in the cuff area by bedtime but it seems no worse after I'm on my feet working in the garden for six hours.   Here is my explanation -

The cuff on my first AUS800 implant in January 2013 was far back on the urethra nearer the anus - probably the recommended position.  That caused some irritation and minor pain when sitting as tubing somehow located under the cuff and close to the surface.  Surgeon prescribed daily 100 mg of Amitryptline (a anti-depressant med) to relieve the pain.  It work well.  On the second AUS800 implant in February of 2015 a different surgeon (the first retired) placed the cuff on the urethra nearer the scrotum to avoid any overlaping of the tubing.  It did, but having the cuff nearer the testicles causes chaffing and some pain in the scrotum by bedtime.  So I am continuing the Amitryptline.  This minor irritation and pain is a small price to pay for urinary continence.

I'll be happy if this second implant continues to function for a few more years.  

tpelle

 

hap4174
Posts: 5
Joined: Apr 2016

I am so enjoying not carrying a pad in every pocket when I am out that the pain is minor. I have been thinking that the pump assembly inside  the scrotum has been my problem but the area around the cuff is very tender also so that coulld be very well be my problem also since pain is sometimes hard to pin point. My doctor tells me to give it time..maybe he is right.

   Thanks again for your help. Hope your garden does well.

Hap 

Bmmg
Posts: 2
Joined: Jun 2016

I had prostrate surgery 3 years ago and have incontinence issues 3-5 Tena underwear per day depending on the day.  I have read a lot on here about the AUS & am leaning to having that procedure done   Does anyone have experience with the other procedure which I believe is called the sling   The incontinence has not stopped me from doing everything but certai a lot of things   I dread social outings as I may have to change pads or leak but I have still attended football & hockey games I just have a clear path to the bathroom  complicating my issues is a colostomy which I recieved due to a bowel injury during the prostate removal.  So it has been a double dose of "fun".  

Thanks in advance & Happy Fathers Day!!

 

 

 

 

 

Josephg
Posts: 73
Joined: Jan 2013

I cannot give you any advice on the sling, other than when I was reviewing my options, I read a lot of negative reviews/experiences about the sling, basically stating that it was not all that effective.  I had the AUS 800 implant surgery in January 2013, and it completely took care of all the concerns/dreads that you mention in your post.  It has been a life game changer for me, and I wholeheartedly recommend it to anybody whose quality of life is suffering, due to incontinence.  I've listed some links below that detail my experiences in chronological order which you are welcome to review.

http://csn.cancer.org/comment/1324584#comment-1324584

http://csn.cancer.org/comment/1326323#comment-1326323

http://csn.cancer.org/comment/1339326#comment-1339326

http://csn.cancer.org/comment/1339561#comment-1339561

http://csn.cancer.org/comment/1344785#comment-1344785

http://csn.cancer.org/comment/1413239#comment-1413239

Please let me know if you have any additional questions.

Bmmg
Posts: 2
Joined: Jun 2016

Josephg thank you for all of the information.  I told my doctor today I will do the AUS. Hopefully that will happen in December.  

Josephg
Posts: 73
Joined: Jan 2013

I'm glad that the information that I provided to you assisted you in coming to a decision.  I wish you the best of success in your upcoming procedure and the resulting new life of continence.

Subscribe to Comments for "Artificial Urinary Sphincter Implant (AMS 800) -- help!!!"