AMS 800 artificial urinary sphincter

Trew said:

I am very happy with my AUS
I am very happy with my AUS 800.
I've had it in over a year now and for me, it works. I do have some dripping with certain activities by I do not wear a pad.

The constant dripping was getting impossible for me to live with. I have no regrets about getting one installed.

Mine is on the left side which works perfecctly for me.

Trew Happy
Hi Trew: I've watched your posts over the years. It seems that if the AUS800 can be successful with the early problems you faced, that's encouraging.

The CD the doctor gave me of the workings and placement of the AUS components shows the balloon resorvoir placed in the left lower abdomen near the bladder. Is that where your's is located? I have had hernia surgery using mesh on that side, so I am wondering if that might cause a placement problem; and if the balloon could be placed in the right lower abdomen instead. I'm sure I'll get an answer from my surgeon, but I don't see him for another month or so and I am concerned that this may be an obstacle to completing the surgery. Appreciate any comments. tpelle

red granny said:

AUS 800

Hi just joined

I have had the AUS 800 installed december 18 2012 just before christmas stood up to eat my turkey I have not had it activated yet Jan 9th 2013 the big day

 

Tell Us More

Hi Red:  Give us a reading as to what's been happening in these first ten days.  Was there an over-night stay in the hospital or in an out-patient surgery unit?  Did you go home with a catheter?  If so, when did it come out and who removed it?  Were you up and about in the first days after arriving home?  Did you need a care-giver's help when you arrived home, and if so, for how long?  (I live alone).  How soon were you driving?   Is your leakage greater or less than it was before surgery, during this period of waiting for the activation?  Did you have any problems with bowel movements?  What has been your pain level, and how have you managed it?  Do you at this point have any recommendation for an old guy (81) having AUS surgery on February 6?  I (and I am sure others) would really appreciate your giving us at least a weekly account of your progress for a while.  tpelle

 

tpelle said:

Tell Us More

Hi Red:  Give us a reading as to what's been happening in these first ten days.  Was there an over-night stay in the hospital or in an out-patient surgery unit?  Did you go home with a catheter?  If so, when did it come out and who removed it?  Were you up and about in the first days after arriving home?  Did you need a care-giver's help when you arrived home, and if so, for how long?  (I live alone).  How soon were you driving?   Is your leakage greater or less than it was before surgery, during this period of waiting for the activation?  Did you have any problems with bowel movements?  What has been your pain level, and how have you managed it?  Do you at this point have any recommendation for an old guy (81) having AUS surgery on February 6?  I (and I am sure others) would really appreciate your giving us at least a weekly account of your progress for a while.  tpelle

 

New Member and Initial AMS 800 Implant Experience

Hi Folks,

I've been lurking on this site for the past 3 months, after my surgeon recommended the AMS 800 as a solution for my incontinence, 1 year after robotic prostate removal.  Not nice to be one of the 5% with resulting total incontinence, but not a bad outcome overall in the total broader picture of prostate cancer and its aftermath.  Thank you all for your tremendous amount of information and candor, regarding your personal experiences.  A special thanks goes out to Trew.

I'm not a good medical patient (I was 28 before I was able to receive an injection without passing out and requiring adrenaline to be revived), but after the prostate biopsy and the surgical removal of the prostate and all the subsequent blood tests, I seemed to have toughened up quite a bit.  But, the thought of having a foreign object permanently implanted into me was still a topic of major concern and intrepidation.  Reading about all of your experiences was tremendously helpful to me reaching a decision to move forward with the procedure to hopefully regain most of my continence back, and get out of the diaper plus multiple pads replacement daily routine.

The cystoscopy itself was very brief and completely painless, and I did a lot of worrying for nothing.  The surgeon advised me that my sphincter looked like a wide open barn door that would in all likelihood never close by itself again.  Further, the examination of my urethra repair from the prostate removal surgery was in great shape, and I was a perfect candidate for the AMS 800.

In my few previous surgeries, I took a very long time to shake the residual effects of anesthesia, getting nauseous for 24+ hours after surgery, everytime that I would attempt to get out of the hospital bed, stand up and walk around.  I discused this with the Anesthesiologist during my pre-op visit, and she recommended the placement of a scopolamine patch behind my ear, just before surgery.

So, on this past Wednesday, I had the AMS 800 implanted in me at Brigham & Womens Hospital in Boston, Ma.  The scopolamine patch reduced my post-op nausea to under 12 hours.   I was discharged on Thursday, and working on Friday (from home).

The procedure itself and first few days aftermath, was much better than I had originally envisioned.    I'm now on a cocktail package of meds of oxycodone, ibuprofen, docusate sodium, and ciprofloxacin, until they run out.

Everything that you folks have said is spot on, so far.  It is REALLY UGLY looking down there with some very grotesque swelling and discoloration.  I asked my wife to remove the tape and packing on the incision behind the scrotum two days after the surgery, as instructed, and she replied. "Is that what the 'for better or worse' in the marriage vows refer to?".

I walk like Grandpappy on the Beverly Hillbillies, but other than looking silly, I have no trouble in walking around or going up or down stairs.  Getting in and out of chairs is painful for my abdominal incision, an intense burning pain, lasting a second or two, as my abdominal muscles flex.  I have a water bed, but decided to sleep in the traditional guest bed for the foreseeable future, as I do not believe that I could get over the wood frame wall of the water bed in the morning.  Getting in and out of the car is a painful experience, as I have a Honda Fit (or roller skate as some of my friends refer to it), but once in the car, the ride is OK, as long as significant potholes are avoided.

I have absolutely no pain or discomfort at all with the lower incisdion, or at least not yet, and I found this this to be very surprising. Is there something coming along in this area, and I have just not reached that point yet?

The surgeon advised me to grab the pump tube, just above the pump itself, and gently pull down on it twice per day ensuring that the end of the pump touches the bottom of my scrotum each time, as this pump can have the tendancy to move itself upward into the body, as all of the surrounding tissues are contracting and healing.  I had some initial mental anxiety in just touching it, let alone pulling on it (perhaps, part of the surgeon's request was exactly to train me to touch it without any psychological intrepidation), but I am definitely getting better at this action.

So, now I wait for 6 weeks to heal and then have the pump activited and see the results.

Thanks again to all of you for sharing your experiences and giving me the courage to take this big step.

I will update this post from time to time, sharing my experiences, as you all did for me.  I am also available to answer any questions that anyone may have regarding my experience.

Josephg

 

 

Josephg said:

New Member and Initial AMS 800 Implant Experience

Hi Folks,

I've been lurking on this site for the past 3 months, after my surgeon recommended the AMS 800 as a solution for my incontinence, 1 year after robotic prostate removal.  Not nice to be one of the 5% with resulting total incontinence, but not a bad outcome overall in the total broader picture of prostate cancer and its aftermath.  Thank you all for your tremendous amount of information and candor, regarding your personal experiences.  A special thanks goes out to Trew.

I'm not a good medical patient (I was 28 before I was able to receive an injection without passing out and requiring adrenaline to be revived), but after the prostate biopsy and the surgical removal of the prostate and all the subsequent blood tests, I seemed to have toughened up quite a bit.  But, the thought of having a foreign object permanently implanted into me was still a topic of major concern and intrepidation.  Reading about all of your experiences was tremendously helpful to me reaching a decision to move forward with the procedure to hopefully regain most of my continence back, and get out of the diaper plus multiple pads replacement daily routine.

The cystoscopy itself was very brief and completely painless, and I did a lot of worrying for nothing.  The surgeon advised me that my sphincter looked like a wide open barn door that would in all likelihood never close by itself again.  Further, the examination of my urethra repair from the prostate removal surgery was in great shape, and I was a perfect candidate for the AMS 800.

In my few previous surgeries, I took a very long time to shake the residual effects of anesthesia, getting nauseous for 24+ hours after surgery, everytime that I would attempt to get out of the hospital bed, stand up and walk around.  I discused this with the Anesthesiologist during my pre-op visit, and she recommended the placement of a scopolamine patch behind my ear, just before surgery.

So, on this past Wednesday, I had the AMS 800 implanted in me at Brigham & Womens Hospital in Boston, Ma.  The scopolamine patch reduced my post-op nausea to under 12 hours.   I was discharged on Thursday, and working on Friday (from home).

The procedure itself and first few days aftermath, was much better than I had originally envisioned.    I'm now on a cocktail package of meds of oxycodone, ibuprofen, docusate sodium, and ciprofloxacin, until they run out.

Everything that you folks have said is spot on, so far.  It is REALLY UGLY looking down there with some very grotesque swelling and discoloration.  I asked my wife to remove the tape and packing on the incision behind the scrotum two days after the surgery, as instructed, and she replied. "Is that what the 'for better or worse' in the marriage vows refer to?".

I walk like Grandpappy on the Beverly Hillbillies, but other than looking silly, I have no trouble in walking around or going up or down stairs.  Getting in and out of chairs is painful for my abdominal incision, an intense burning pain, lasting a second or two, as my abdominal muscles flex.  I have a water bed, but decided to sleep in the traditional guest bed for the foreseeable future, as I do not believe that I could get over the wood frame wall of the water bed in the morning.  Getting in and out of the car is a painful experience, as I have a Honda Fit (or roller skate as some of my friends refer to it), but once in the car, the ride is OK, as long as significant potholes are avoided.

I have absolutely no pain or discomfort at all with the lower incisdion, or at least not yet, and I found this this to be very surprising. Is there something coming along in this area, and I have just not reached that point yet?

The surgeon advised me to grab the pump tube, just above the pump itself, and gently pull down on it twice per day ensuring that the end of the pump touches the bottom of my scrotum each time, as this pump can have the tendancy to move itself upward into the body, as all of the surrounding tissues are contracting and healing.  I had some initial mental anxiety in just touching it, let alone pulling on it (perhaps, part of the surgeon's request was exactly to train me to touch it without any psychological intrepidation), but I am definitely getting better at this action.

So, now I wait for 6 weeks to heal and then have the pump activited and see the results.

Thanks again to all of you for sharing your experiences and giving me the courage to take this big step.

I will update this post from time to time, sharing my experiences, as you all did for me.  I am also available to answer any questions that anyone may have regarding my experience.

Josephg

 

 

Great Help

Thanks, Josephg:  Your experience during these first few days following AUS800 surgery quiets my fears.  I hope I can report similar experience after my surgery on February 6.  Please keep posting.  tpelle

Trew said:

Family Doctors And "What's an AUS?"

 I have run into this too.  Talking with a friend who is a family doc he had no idea what an AUS was.  I like the tatoo idea.  I might have that done.  worth thinking about.

What would the tattoo say?

 

Tatoo or bracelet

I'm waiting until I have several months of success with the AUS before getting a permanent warning to medical personell. After 6 months from initial install I had to have a revision to my AUS on Dec 5 and it's still not activated so I'll just continue to wear the bracelet until the new pump is working right.

My bracelet has five lines on the front and four on the back. It also includes an Interactive Health Record on a website that can tell medical folks all they need to know about my history, medications, people to call, etc. I got my Stainless Steel Classic Bracelet from American Medical ID for $39.95.

First line on the front: STOP   STOP   STOP

Second line on the front: AMS 800 INSTALLED

Third line on the front: DO NOT CATH

Fourth line on the front: UNTIL AUS

Fifth line on the front: IS DEACTIVATED

 

First line on the back: my name and birth date

Second line on the back: FOR MEDICAL INFORMATION

Third line on the back: MYIHR.COM OR 800-490-2400

Fourth line on the back: USER: my name     PIN: assigned when you buy the bracelet

 

As others have posted: almost no one knows what an AUS is and will never check for one in and emergency. If you have one, you definately need a warning method to keep your plumbing intact. I have a virtual army of MD's keeping me going after multiple cancers and heart issues and I've asked them all about their knowledge of this and none have ever had another patient with one and most didn't even know what it is.

 

 

Josephg said:

AMS 800 Activated

I had my AMS 800 device activiated on Thursday morning.  There was a bit of intrepidation on my part on Thursday morning, after waiting the six weeks since the implant surgery, but it was totally unfounded, in retrospect.  The actual device activation took about 3 seconds, performed by the Doctor (this is probably something that I should learn to do for myself at some point in the near future).  The Doctor gave me a user's guide (which I had already received at the time of the implant surgery, and studied copiously during the six week wait), and then he said, "You are all set, and I'll see you in 2 months for a follow-up visit."  I replied, "I'm not leaving here, until I use this device, myself.", to which he replied, "Sure, hang aroud, until you have to urinate, and I'll be in the area, if you have any problems or questions."  So, I did just that, and when I had to urinate, I used the pump, and it worked exactly as the user guide and Doctor indicated that it would.

So, I'm now 2+ days into using the activated device.  I've gone from 3-4 full pads per day, to a bit more than a heavy spotting (<15% of pad capacity) within 1 pad per day, and, perhaps that heavy spotting is due in part to me not waiting at the toilet after urinating for a full 1 - 1 1/2 minutes for the device's cuff to fully close.  Last night, I went out to a local restaurant/pub with my wife for Margaritas, as we do every Friday night after work.  This typically results in a full pad by the time that we return home, however, last night, there was not much really noticeable in the pad, upon our return home.

My next test for comparison purposes will be a lengthy shopping spree to Home Depot and a few other guy-type stores, that will involve a fair amount of in and out of the car and walking around in between, with some minor lifting for checking out things.  Historically, I get about 2 hours of this type of activity, before my pad and my Depends are full, and I'm on the verge of leaking through my pants.  It will be GREAT, if the use of this device extends my available time for this activity.

The use of the pump is fairly straightforward, though the pump itself and the tubing are more prominant, once the device is activated and pressurized, and that means that there is less 'searching' for it within the scrotum.  I find that the effort to squeeze the pump is a bit more than I had anticipated, and I can feel the squeeze in the scrotum wall itself, as I squeeze the pump.  It is not painful, but not fully pleasant, either.  One thing that Trew had mentioned, be sure to firmly grip the top of the pump and tubes in one hand to secure the pump, before attempting to actually pump with you other hand.  The pump is a bit slippery within the scrotum, and if you don't have a firm grip on it, the act of pumping can cause it to jump out of your holding hand, much like squeezing a wet pumpkin seed.  The result of this is that the pump becomes a mini-missile and flies right into one of your testicles, and that IS somewhat painful.

Getting up in the middle of the night to urinate, when you are 3/4 asleep is a bit different now, as you have to try harder to concentrate on using the pump.  The first time, I did not open the cuff up enough (not enough pumps on the pump), and this created major trajectory issues for the urine flow, resulting in quite a mess around the toilet and floor, which I had to subsequently clean up.  I suspect that this will become more routine, and I get more experience in using the pump while 3/4 asleep.

So, in summary, after 2+ days experience, I am REALLY happy with the initial results of the device.  So far, and it is based upon a very limited experience data set, the surgery and waiting time have been well worth it.

I'll report back, after I've had more experience in converting back to my previously more active lifestyle, with longer shopping sprees, some heavy labor like digging holes and chopping wood around the yard, and spending time back in the gym in the weight room and on the track.

 

Scrotum Pain

Josephg.  Thanks for your post.  It answers a lot of questions.  I am sixteen days out from AMS800 implant.  There is no pain at either incision but the scrotum in the area of the pump is still quite sensitive when I pull down the pump twice a day, when I get in and out of chairs and to some extent when I walk.  When I am settled in my recliner or in bed, there is little or no pain.  The AMS Users Guide notes "Pain is fairly typical in the first 4-6 weeks after surgery."  Did you experience this pain and how long did it last.  Pain meds seem to have little positive effect.  Appreciate any comments.  tpelle

Josephg said:

Sctotum Pain

Hi tpelle

My first clarifying question to you would be whether your pain is topical (scrotum outside/inside skin surface and/or flesh in between) or internal (testicle and/or testicle tubes).  For me, there was internal swelling that caused discomfort any time that I moved the entire strotum, whether it was moving in or out of a chair, sitting or standing, or pulling down the pump, for about 2 weeks. I would not have characterized it as pain (not sharp or stabbing), but more discomfort.   I also did find that on occasion, when I would pull the pump down as part of that daily exercise, I had also inadvertently grabbed a testicle tube, in addition to the pump tubes, and that caused a bit of an unpleasant sensation.

On the other hand, I did and still do, have topical irritation/sensitivity around the scrotum outside skin surface itself.  I would characterize it as a feeling of razor burn, and in fact, that might be what it is, or at least what caused it.  Afterall, I did not shave my scrotum for the 45+ years that I had hair on it, but for the surgery, there was definately a fair amount of shaving that took place.  For the year prior to the surgery, I rarely had any topical irritation/sensitivity around the scrotum itself, even though it was sitting partially in urine for a fair amount of time each day, considering that I was filling 3-4 pads per day.  After the surgery, I have felt the irritation/sensitivity, which I am attributing to the presence of urine, almost continuously around the scrotum itself, even in places that were not shaved.  I also found that the edges of the pad, where the elastic pleats are located, irritates this area, whereas it did not prior to the surgery.

For some relief, I resorted to applying some Neosporin ointment onto the sensitive areas.  The gel consistency, combined with its antibacterial qualities, appeared to be a logical choice, and the 'shield' created by the gel, did provide significant relief to the irritation/sensitivity.

 There is also a possibility that there is some irritation/sensitivity caused by the pump's leading and trailing edges contacting the inside wall of the scrotum, but at this point, I cannot isolate that from the irritation/sensitivity on the outside surface of the scrotum.

I'm at 3+ days post-activation, and I stopped using the pad yesterday, to see if the irritation/sensitivity on the outside surface of the scrotum will subside, by the removal of the pad with its edges, in addition to the removal of accumulated urine, alleviated by the device.  I'm still using Depends for now as a precaution, until I accumulate more experience regarding the actual effectiveness of the device.

I trust that this information is helpful to you, and I will keep you posted, as I gain further  experience.

Josephg

 

Scrotum Pain

Most informative, Josephg.  I think that the Scrotum pain may be from chaffing on the outer skin where the pump/wires bulge and the scrotum rubs against the Depends pad.  Last night I tried Bacitracin ointment on the pump side of the scrotum and will see if that helps.  But, I also think that the pump/wires rubbing against the inner skin of the scrotum may be another source of pain.  Thanks for your help.  Keep posting!  tpelle

ams 800 AUS

Hi everyone, I just found this site last night about 8:30 pm and real all the comments until passed midnight.  Just wanted to say thanks fr all the info. and experiences you all went thro.  I have an appointment with urologest thursday to hopefully discuss this with him/her. ( go to VA and it seems someone different each time but as long as they pay for it I'm happy) I had the prostrate removed a year ago sept and use between 3-4 pads or briefa a day since, and would like not to have to use them, it it really a pain in the neck.

  I'm not into medicine and I notices a lot of test people went thou, are they necessary in all cases or where there other problems??  what are urethroplasty & cystoscopy?  I don,t have any problems at this time that I'm aware of, so may-be I won't need them???

  We are planning a long auto trip aroung the 4th of july (Boston to around Tampa, Fl) would there be enough time to attempt this?  Any idea how long to wait before a long trip, I'll do the driving.

  Will ask the doc these and others but it is great to finally find a place where I get actual first hand experiences of men who have had this done.

  Glad I found this site.   George

 

surgery schedule/ trip

I hope to find that out thursday. We're snowbirds and will be doing the trip Boston to Tampa again in Oct. so it almost seems that the july trip will probably not happen unless it is at the end of the month. Time will tell.  As I read the posts last night I was almost thinking of not doing it altho everyone said that the outcome was well worth the pain and inconvience of the surgery but after today, really wet day, there isn't much chance of it not happening only question is when?   What is the Divience that many people have mention in the posts??  I really have no medical knowledge.