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AMS 800 artificial urinary sphincter

Trew
Posts: 892
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."

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

I've had the AUS since spring of 2007. After activation, the number of times I urinated during the day were "normal". Sometimes I have to get up once a night, but oftentimes I don't have to pee during the night. I'm wondering if you're experiencing bladder spasms. The AUS shouldn't make you pee any more or any less. Hopefully, your bladder will settle down. You may want to ask the doctor abvout things to avoid until it settles down -- alcohol, caffeine, etc.

Trew
Posts: 892
Joined: Jan 2010

I started radiation 1 year ago. Surgery was in march 09 before that. Since surgery I have been getting up 3- 5 times a night, but the last 4- 6 weeks I am getting up about once a night and the sleep is wonderful. I am not leaking nearly as much at night either, but still very limited control in the day.

Just sharing that sometimes time makes the difference. I tried flomax- but I had a number of problems with it and quit.

Skid row- nice to see you again. My next U of MI appointment is jan 3. Maybe then I will find out IF/When i can get an AUS installed.

Until then, back into enduring for me.

ob66
Posts: 218
Joined: Apr 2010

My guru, my guiding star. Everything you said came true. August 2010 activated. Ever since I am as normal as any other man, except I have to "pluck my magic twanger" to pee. I started in stalls, for I would drop pants and underpants. Now, if wearing shorts, I can stand up to the urinal and activate and most people in the vicinity would have no clue (maybe some would think I was fondling myself a bit too much). This is great. For those who have any doubts you can e-mail me for details at rforsberg1@cox.net. I am more than willing to share, and have helped a number of friends in the process. Not everything is 100% for the most difficult cases, but all those in Trew's boots who have been able to try it are converts. It has to be the gold standard.

Trew
Posts: 892
Joined: Jan 2010

I can hardly wait.

I find that the less I do, the less I drip so I am becoming more and more inactive. Just stinks. I have been sining to myself, " All I want for Xmas is a new AUS...." but its not going to happen this year.

My drip is slowing down as I move further nd further away from the last surery where scare tissue was cut. Cath is going well, right now no difficulties, so I am hopeful in early 2011 I can get this done and move on.

hightide
Posts: 26
Joined: Jul 2010

Hey Trew, good to see you are still on here and I get the impression things are getting a little better. I have not been on the board in a while but I am getting caught up on a few things so I should be checking in more often. Wishing you the best for the Holidays and hoping you get good news in Jan. 2011.
Regards, hightide

DB78602
Posts: 3
Joined: Oct 2010

All, after finding this site and reading the posts i think there is finaly hope for all of the leakage problems that I have been having since surgery. Tom your ordeal sounds a lot like I have have gone through the last year. I have had a number of issues of scar tissue after surgery that required trips to the ER to be catheterized. Self catheterization would not get past the scaring. Finally had to be dilated as Tom discribed to a "french 22" that has finally cleared the scar tissue but seems to cause a major loss of control. going through 10 to 12 pads a day. I am OK sitting but if I am standing or walking there is almost no control and kiegal is not working. I resently moved to the Austin area and the Urologist here told me about the AMS unit. I am scheduled to see him again in Feb. and thinking about scheduling the implant.

You guys have given me a vast amount of information, thanks

Zegoli's picture
Zegoli
Posts: 11
Joined: Feb 2011

DB78602, I'm new to the list.
Just noticed you didn't get a reply to your jan 8th post, have you had your visit to the urologist?
I'm also seriously considering the AMS800 implant. (I just wrote a long text introducing myself, but lost it when I clicked on "Preview comment"!) Guess I'll do it again when my frustration calms down.
Zegoli

DB78602
Posts: 3
Joined: Oct 2010

Yeah saw him last week. The follow up was good,PSA test was undetectable. We talked some more about the AMS800. Think I will go ahead with it later this year once the insurance deductable is taken care of for the year but thats another story. In the mean time I did start using a Acticuf clamp. http://www.acticuf.com/index.php
It works ok but would not want to wear it more then about six hours then everything gets pretty tender. But at least I am able to work and play golf without having to run to the restroom every hour or less to change a pad.

Dennis

Trew
Posts: 892
Joined: Jan 2010

I have found that a good postal scale is the way to keep track of leakage. You can deduct the weight of the pad and just measure actual urine in the pad. right now I am leaking around 10 oz a day with variations running between 8- 12 or as high as 15 oz. But this gives me a better idea what I am dealing iwth. I reord it all in a pad diary and take it in to the uro when I go. She finds it very helpful.

Self-cath started after an or procedure to remove and cut scar tissue. On Sept 1 I stated cath 2x a day thrugh jan1.

Jan 1x a day. Feb every other day, and for march I am now at once every 3rd day and April will be once every 5 or 6 days. I see the uro at U of MI on May 9 ( I know these appintments like I know Xmas!)and thenI expect to get a date for the AUS. I can hardly wait. Well, no, I ca't wait, that has been the problem.

I confided in a long distance freind the problem I was having and told me 'why don't you just go to the toilet more often?" which indicates many may have no idea what incontinence is. I only wish it could be solved so easily as going to the toilet more often.

May 9 is the date. I get scoped to see if all is clear and then, I hope I can get this all done by June.

Zegoli's picture
Zegoli
Posts: 11
Joined: Feb 2011

Have been reading your posts, see that you made great progress.
I also hope to get this all done by June, for both of us.

Zegoli's picture
Zegoli
Posts: 11
Joined: Feb 2011

Like Dennis said, “you guys have given me a vast amount of information, thanks!”. Awfully helpful. But I do have a new topic I’d like to discuss.

I have a mild urinary incontinence, just one pad a day suffices. And no need to wear one for sleeping. Seems like heaven? But I’m seriously considering an AUS – you wanna know why? Because nowadays I’m single.

From what I’ve gathered, men have three urinary sphincters – the prostate, one leading out of the bladder, and a third at the base of the pelvis, just behind the scrotum. My first two were sacrificed, what gives me control is the third one (plus some muscle pressure ). But this 3rd one is supposed to let go on pleasurable states, like sexual release. Furthermore, the bladder is supposed to contract when everything else relaxes. That’s all involuntary, regulated by the autonomous nervous system.

So, the better I get, lesser control I have whenever I get minimally excited. It wasn’t always so. My post-op when I got a penile implant (rigid type) was awful for over two months, and for 5 months I was so traumatized that I never fully relaxed. Which meant absolutely no leaks at all, I thought I was cured from incontinence. Until one day I had an erotic fantasy while going to work and ended up with a 10 inch blotch in my pants. I had finally come out of a permanent tensioned state and back to loss of control.
Now, how can I flirt if becoming interested is enough to make me squirt? Emptying my bladder first is not enough (and I passed that horrible urodynamic testing), the minimum residue in the bladder suffices for pad overflow. And such flirting situations are usually unexpected. Quite embarrassing!

When I had a partner, incontinence was bothersome during sex, but it was far more manageable, things could be planned for minimum mess, the surprise factor was somewhat under control. But even then, having control even (and specially) when naked would be great! But now that I’m single, I’m really looking forward to the AUS benefits. It replaces the sphincters I lost, liberating the one I still have from improper stress.

Since none of you mentioned this question before, I thought, well this talk may be a bit intimate for a list. Or perhaps for those of you that have a heavy incontinence there are just other priorities bothering you. Just in case any of you’d prefer talking about it in private, you can reach me at zegoli@gmail.com . No trouble for me though, I can be straightforward about it.

ob66
Posts: 218
Joined: Apr 2010

I have found you Zegoli, and will respond. Unfortunately for me, my nerves could not be spared when I had my daVinci, so I do not have your problem. Damn! I nevertheless think I can help. One aspect of the AUS that you may discuss extensively with your doctor prior to it's being done, is the tubing with regards to fitting on installation. I can feel my tubing mostly at the base of the penis where it comes up to the holding tank in your abdomen above your penis, from the activating device. I think that could be avoided were you measured very carefully, and your doctor was fully aware of your need for comfortable sexual activity. Other than that my device works tremendously, and I would not want to be without it. Hope this helps.

ob66
Posts: 218
Joined: Apr 2010

I have found you Zegoli, and will respond. Unfortunately for me, my nerves could not be spared when I had my daVinci, so I do not have your problem. Damn! I nevertheless think I can help. One aspect of the AUS that you may discuss extensively with your doctor prior to it's being done, is the tubing with regards to fitting on installation. I can feel my tubing mostly at the base of the penis where it comes up to the holding tank in your abdomen above your penis, from the activating device. I think that could be avoided were you measured very carefully, and your doctor was fully aware of your need for comfortable sexual activity. Other than that my device works tremendously, and I would not want to be without it. Hope this helps.

Zegoli's picture
Zegoli
Posts: 11
Joined: Feb 2011

One of my nerves was surely sacrificed and possibly the other one too. Anyway, the radiotherapy messed up whatever might have been left, thats what made me face the penile implant.
I just could't quite understand which of the problems I brought up you were referring to when you mentioned the sacrifice.
But your advice on being careful with the measurement is quite helpful, thanks.

Zegoli's picture
Zegoli
Posts: 11
Joined: Feb 2011

Good tip, Dennis.
I didn't know about it, gonna request a sample. It mat be useful till the waiting for the AUS is done.

DB78602
Posts: 3
Joined: Oct 2010

Not something I want to use long term but works for now.

Zegoli's picture
Zegoli
Posts: 11
Joined: Feb 2011

After consulting 3 more different urologists, I´ve decided to postpone the AMS800 surgery, and give a try to some urophysiotherapy and perhaps medication to control a hyperactive bladder. Let's see if a few months treatment will bring favorable results.

survivor 1
Posts: 1
Joined: Mar 2011

Hi tom, i just wanted to let you know that after reading your posts about the artificial sphinter i felt alot better about getting it done. Like you i have had 11 cystos and 3 surgerys. My ams was implanted on jan 10th 2011, was activated on feb 21 gave me my life back, but i did have a question for you or anyone else that may be reading this. Did you have pain or buring on the head of the penis for a time after and before the sphinter? I feel like it is from sitting in urine most of the time and it has rubbed it raw even though there is no apparent sign of it being red. I went through 12 to 14 pads a day and now only because I sneeze or cough do I ever leak..if anyone is having second thoughts please don't it's well worth the unconfortable part of the operation and healing.

Zegoli's picture
Zegoli
Posts: 11
Joined: Feb 2011

I've yet to implant the sphincter, but have no burning or pain in the glans. But then, my incontinence is minor (most of the time), so I get no rash.
Thanks for the fillip!

Old-timer's picture
Old-timer
Posts: 133
Joined: Apr 2011

I am new at this. So this, my first message,is more experiment than knowing what I am doing. I am only a five-pad-a-day person, but, in answer to your question, I have not experienced any burning or redness. Forgive my rambling.

My urologist has recommended that I have the AMS 800 implanted. Based partly on what you folks are saying, I am seriously considering her recommendation. But I need some answers to a few questions before I decide. You and others have explained what to expect during and after this procedure very well. But not one of you has memtioned age. Do you know or have you heard anybody say that age should be a factor to consider when deciding whether to implant the AMS 800? Should us "old guys" give it a try? Any thoughts about this?

guards
Posts: 72
Joined: Aug 2010

Old timer welcome to the board. I am 67 and just completed my 800 9 weeks ago and if it fails at 77 ill have another installed . The ability to function in normal situations is priceless it gave me back my life. if it failed at 69 id get another lol.

Zegoli's picture
Zegoli
Posts: 11
Joined: Feb 2011

When I implanted the rigid prosthesis, there was a 50% loss of sensations in my penis, mostly on the middle section, a bit not so much in the glans. I keep wondering if the AUS will bring any further loss.

Zegoli's picture
Zegoli
Posts: 11
Joined: Feb 2011

After consulting 3 more different urologists, I´ve decided to postpone the AMS800 surgery, and give a try to some urophysiotherapy and perhaps medication to control a hyperactive bladder. Let's see if a few months treatment will bring favorable results.

Zegoli's picture
Zegoli
Posts: 11
Joined: Feb 2011

Seems I've got a quite hyperactive bladder, but my sphincter muscles are doing fairly well. I've been receiving some electrical stimulation in physiotherapy. It's applied on the right ankle, and is supposed to go up the Autonomic Nervous System and reach the bladder. Just a few applications and the number of times I peed a day dropped below 50%. Then I started taking Enablex, but after a week I have made no further advances.
I'm getting better on what had been manageable, but no progress on what really bothers me - lack of control on pleasurable situations.

lion1
Posts: 240
Joined: May 2007

Zegoli,

Are you saying that you continue to see significant progress with your Electro-therapy(Ankle needle)? I am curious because I postponed my Interstim inplant for a few months. It's like a pacemaker but whether it will work is 50/50 like everything else.

Lion1

Zegoli's picture
Zegoli
Posts: 11
Joined: Feb 2011

After a few months of eletrostimulation + biofeedback + Enablex I made very little further progress. Now I am trying eletrostimulation on a daily basis, instead of twice a week.

Next step would be some Botox injection on the bladder, every 3 months, for at leat one year.

Seems the AMS800 is not a good option for me, since I have a strongly hyperactive bladder (and a good sphincter control).

limpndamp
Posts: 7
Joined: Oct 2012

To those of you with an AUS, do you still have to wear a pad?

I had DaVinci RP in February 2010. A year later I was down to one pad per day, and it wasn't very used. So I decided to have the Advance sling implanted, figuring that would solve the incontinence. Well, that surgery actually backfired. Although I still only use one pad per day, it's usually pretty used up. And I have to wear an incontinence clamp to play golf, or else it would take two pads to get through 18 holes.

I've seen the urinary doctors at Duke, to get their input for my alternatives. They immediately recommended the AUS. But if the AUS does not eliminate the need for a pad, then I may not have the procedure. (I don't mind wearing a pad to golf, but I'd like to not have to wear the clamp.)

BTW - I learned a new term while I was at Duke. "Social Continence". According to the urologists of the world, if you are only using one pad per day, you are considered "socially continent". I guess this helps the statistics. I told them this is like being "slightly pregnant".

lychee
Posts: 5
Joined: Nov 2012

Hello I had DaVinci RP seven years ago and after 3 years I had a Advance Sling installed without much help. 5 years after RP my cancer came back and I was treated with Proton Therapy. 2 years after Proton my sphincter got worse 5 pads per day and I had a ASU installed on Nov.2011 6 months after this operation I am “Social Continence” One large gard pad will last all day if I work hard or light pad if not. I am a happy 74 year old with my one pad per day and would recommend this operation to anyone, As for the bulb in my sack it is not noticeable from the inside or out side. After a few months I have learned to step up to the Urinal with the other guys, The technique I use is to lift my sack over the top of my shorts which controls the aiming angle so I can use both hand to squeeze the bulb.My ASU bulb placement is at the very top right hand side of my sack. The reason for two hands is the bulb very slippery inside the sack, one light touch will open it for flow. I use Tri Mix to take care of my other friend down there. Would be happy to answer any questions and give info on my Dr. in South Fla. Lychee
.

tpelle
Posts: 154
Joined: Aug 2003

Lychee: Would you tell us what type of leakage you experienced. I don't leak while in bed except a drop or so changing positions. Where there is urine in the bladder I leak sitting down or getting out of my computer chair or recliner. I leak all the time when standing (yard work, house work, shopping, treadmill walking, etc). When I get back to the house, the bladder is always empty and the pad full. Yet my total leakage averages 7.9 fluid oz per day, using about 2.3 Depends pads per day on the average. I have an appointment in mid-December with a U.C.Med vice chair of the department of urology to see to see if an AdVance sling, or even an AUS 800 would be appropriate for me. I'm ten years since RPS and PSA remains at <.01. Any comments would be appreciated. tpelle

lychee
Posts: 5
Joined: Nov 2012

Hi Tpelle Sorry this was not a quick reply , I had leaked like you after my RP using lots of pads climbing ,lifting and working. I would used a guards up in 3 to 4 hours. At night a guard for protection maybe dry in the morning. After my Proton treatment my pad count got worse,with no work 2 to 3 pads per day, working it was double,and a little wet at night. I waited a year after proton treatment and chose to have a AUS800 installed. I am about a year after having it installed and very happy with the outcome, not totally dry but have Social Continence,I have a decision to make weather to have it removed and replace or just live with it, to be decided later.I would not go through having a sling install the operation takes the same time and also six weeks on no lifting and light work. I only gained a little less pad usage. If I were in your shoe at this point I would have a AUS installed ASAP. The operation was simple outpatient a catheter for one week and 6 weeks till AUS was turned on.( During the weeks from catheter removal till turn on I would advise using a condom catheter this makes life much simpler, remember your on full flow) I use about 2 to 3 medium lady’s pads per day that will cover night time use also. The AUS really is simple to use, only a slight touch turns it on, but no one tells you it takes 2 minuets to turn off, but since I have a pad I don’t have to wait.
PS.Medicare will provide you these for free, ask your Uro , he will give you some samples , and watch for adds on TV (Liberty) sign up for 3 month and you will have extras, very simple and easy to use.I think you can e-mail me for more info. Hope this is of interest and has helped you

golfbol
Posts: 1
Joined: Sep 2012

Hi to all who might read this. I've been reading a lot of posts trying to find some answers to my problems. Had prostate cancer fifteen years ago, had operation plus six weeks of radiation. Everything has gone well until this February when I closed up entirely and had to be dialated. From that point on it was total incontinence.

In August I went to the Mayo Clinic in Rochester, MN for the AMS800 implant. It worked reasonably well for three months and now, all of a sudden I'm nearly 100% incontinent again. I noticed that you said the pump was very easy to press. Mine is almost rock hard and I have to grip the tubes very firmly. Also, my pump it so high that it is very hard to get hold of.

I have purposely made this as short as possible giving just the specifics. If anyone seeing this has any comments or have experienced the same thing I would really like to hear from you. Thanks and my best to all of you.

lychee
Posts: 5
Joined: Nov 2012

Sorry to hear about your problem . Could you have locked out your AMS800 and just need to open it. If you have problems pressing the bulb look up how to unlock it's easy and go through the steps.My bulb is very high but I think I like it I can go up to any urinal open my belt and fly and place my shorts elastic under my sack and with one hand hold the pump body and squeeze the bulb.I can feel only 1/2 inch of the tubes behind the AMS till they disappear in my body,the Dr. tried to pull the out more but no help. The Dr said to me the bulb would be hard with a dimple in the middle if it locked out properly. That my 2cents, best of luck Lychee

tpelle
Posts: 154
Joined: Aug 2003

golfbol: Did you solve the rock hard pump problem? I suspect lechee was right when he said "Could you have locked out your AMS800 and just need to open it. If you have problems pressing the bulb look up how to unlock it's easy and go through the steps."

I found the following in the AMS800 users guide for male patients, which was given to me in anticipation of an AMS800 implant in February. On page 9 "Symptom: The lower portion of the control pump is harder than usual and difficult to squeeze or is squeezed flat and doesn't refill. Possible Cause: Accidental de-activation of the 800. What To Do: Follow the steps for activating your 800 on page 7. Contact your doctor if these attempts fail." Good Luck. tpelle

tpelle
Posts: 154
Joined: Aug 2003

Thanks, lychee, for your help. I saw Dr. Anthony Stone Vice Chair of Urology at U.C.Med-Davis (CA) today. After the usual preliminary questions and his review of my records, he said he would do the AMS AdVance Sling or the AUS800, depending on the condition of the sphincter. The large monitor was immediately next to me when he did the cystoscopy. He pointed out what appeared to be an irregular sphincter orifice, the main part closing, but always a small section at 6 o'clock remaining open -- thus the continuing drippage, except while I was in bed, or sometimes when seated. With no hesitation, I scheduled Feb 6 as the procedure date, his earliest appointment. He said he had done hundreds successfully around the world. He's a 1969 grad of University of Edinburgh and was Chief Resident of Urology at Duke University Med Center in the mid-80's. Lots of honors, awards and publications. I liked his easy manner and willingness to answer questions. As you can see I'm trying to get psyched up! Again, thanks. tpelle

Trew
Posts: 892
Joined: Jan 2010

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.

tpelle
Posts: 154
Joined: Aug 2003

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
Posts: 2
Joined: Dec 2012

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

 

tpelle
Posts: 154
Joined: Aug 2003

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

 

Josephg
Posts: 27
Joined: Jan 2013

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

 

 

Trew
Posts: 892
Joined: Jan 2010

I had forgotten about the gentle tugging of the  device during those 6 weeks before activation to keep it from drifting up into the body.

And the pain from the incision between the rectum and scrotum wasn't anything like I imagined.

I did walk some every day after surgery but I was very careful not to do any lifiting and I kept my car rides to an absoute necessity.

The sphincter opening comment was close to what I heard.  No way it was ever going to close on its own.

I am glad its all behind me. 

Yep, lots of fond memories connected with my AUS and the entire PCa thngie.

 

 

 

tpelle
Posts: 154
Joined: Aug 2003

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
Posts: 892
Joined: Jan 2010

For me incontinence was unbearable.  I could no longer backpack, or do a number of outdoor things I did before.  I was soaking through pads in publc places, becoming reclusive and going through a major personality change.

compared to all that, what pain, or physical embrassment that might be connected to surgery could be worse?  I was willing to try anything.

for me, incontinence was the end of the rope.

There was no where else to go, nothing less to try.

It was a good call for me.

 

 

Josephg
Posts: 27
Joined: Jan 2013

Today was my 1 week post surgery mark from AMS 800 surgery.  So far, so good.  Very much in line with what has been posted by other folks.

I stopped Oxycodone 2 days ago, as the acute pain had subsided, and it was not needed.  I'm staying on a regular regimen of Ibuprofen, for basic discomfort and for its antinflammatory qualities.

My abdominal incision is still quite sensitive and sore to the touch, but most of the instances of acute burning when flexing those muscles while getting up or sitting down has subsided. Interesting enough, the steri-strips so far have shown no propensity to come off, so I'm leaving them there. The incision behind the scrotum still has not caused any pain, though there is a certain tightness being felt, as the skin knits, contracts, and heals.

I've been able to stand up straight and walk normally, with little or no discomfort, even when going up and down stairs.  I no longer have to roll in and out of bed, something that was a long and potentially painful process.  I still need to consciously move my leg under the abdominal incision in such a way that it is not totally unsupported during the moves to get in or out of bed.  I still use my arms as a precautionary move to lever myself in and out of a chair, though the process is much simpler and quicker now.

I noticed today for the first time that the overall swelling has started to noticeably subside.  I initially thought that perhaps I lost a testicle, as I did not have to search at all to find the pump within my scrotum, so that I could pull it downward as recommended by the surgeon (sounds funny, but its true).

For the first 3 or so days post surgery, it was almost like I was somewhat continent again, but my incontinence has come back full time, over the past few days.  I'm now convinced that it was due to the swelling and trauma more than anything else, and I believe that other folks in this posting had noticed the same phenomenon.  So, its back to all the pads each day for the next 5 weeks.

I work on a PC 10 to 12 hours a day for my job, and I resumed work on last Friday (surgery on Wednesday), and other than the discomfort of getting in and out of the chair, there have been no unsusual issues or challenges.  Interesting enough, I had received one of those gel chair cushions covered in fabric and fur for Christmas, and I have placed in on my chair post surgery.  I think that it has actually been helpful, as an added soft cushioning for the incision behind the scrotum.

So, at the one week mark post surgery, I would say that things look good, and I'm looking forward for the next 5 weeks to pass quickly.  If I was asked at this point, if I would go through the surgery again, I would answer, "Yes, in a hearbeat.", for the opportunity to be somewhat continent again.

As Trew mentioned, for folks who are not sedentary by nature, complete incontinence is the end of the rope and a real life changer.  You may not notice at first the small 'adjustments' that you are making day-to-day to cope with your incontinence.  But, after a period of time, you step back and realize that the cumulative effect of those adjustments has added up to some very, very significant changes in your daily life, and more important, how you plan for upcoming events and activities in your life.  You realize that you are often avoiding or scaling back those activities that you have grown to love over the years, those acitvities that give you a sense of living and being alive, and provide value to yourself or others around you.  If having this foreign object in me is the price that I must pay for the opportunity to take back control of my life, I do so willingly.  I believe that I will feel the same and receive validation in 5 more weeks.

I'll post an update in another week or so.

Trew
Posts: 892
Joined: Jan 2010

Reading your post op report awakens a lot of memories.  I had forgotten about being almost continent for that first 3 or 4 days after surgery- actually havng to push to get urine out.

And soon you will be activated and find that once in awhile you will be playing "marbles" which is a interesgting game indeed.

You will probably find that once in awhile when you squeeze the device to pee it will squirt out between your fingers and shoot into the follow closest to it.  You may find yourself saying a quiet "Ouch" once in awhile.

The device acts just like a regular testicle and pulls in and hangs loose just like the other two guys.  I have found that peeing on a cold day outside can be a challenge trying to find the device and pull it done.  You have so many wonderful things to discover about your new life. 

I am delighted to hear it seems to be going well for you.

-Trew 

 

Josephg
Posts: 27
Joined: Jan 2013

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.

 

tpelle
Posts: 154
Joined: Aug 2003

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
Posts: 27
Joined: Jan 2013

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

 

tpelle
Posts: 154
Joined: Aug 2003

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

Josephg
Posts: 27
Joined: Jan 2013

It's been a bit over 2 weeks, since I had my AMS 800 activated, and I thought that I'd provide an update.  I am still learning how to effectively use it; however, the change in my life has been absolutely dramatic, in the positive direction.  I am getting my life back into the activities that I had, prior to the prostate removal and the subsequent incontinence.  The pads are gone, though I still use a Depends, until I build up my confidence to the point where I believe that in the not too distant future, and I can replace the Depends with good old briefs and a pad.

I have virtually no leakage resulting in the activities that I've resumed, so far.  Tomorrow, I resume my trips to the gym, so I'll see how the leakage is impacted with some more aggressive physical exertion.  I can say, however, that I experienced no leakage while wrestling my snowblower around two days ago, removing 10 inches of snow from a 300 foot long driveway.  Any residual leakage that I have now is due to my own impatience of not waiting the full 1 to 1 1/2 minutes for the cuff to close completly, after urinating.

In my previous update, I mentioned the presence of irritation in the scrotum area, perhaps on both the inside and outside of its walls.  The irritation on the outside has completely disappeared, now that there is no urine collecting in any significant quantity in the Depends.  I do, however, continue to have some minor irritation on the inside of the scrotum wall, where the pump contacts it.  I would say that my scrotum is not very large, so there is not a lot of extra room inside for the pump to exist with its two roommates without contacting the inner wall, either with the leading or trailing edges of the pump, itself.  Perhaps, this irritation (more a sensitivity, and certainly not painful) will subside over time, as the inner wall of the scrotum gets a bit desensitized with the continued contact from the pump.

One lesson learned so far, is to urinate when you first feel a significant urge to do so, rather than waiting until it becomes urgent (such as the combination of beer and a good sporting event on TV).  Once urgent, urine starts to flow uncontrolled (at least, for me) when you first start to pump the pump, and the cuff is not yet opened enough to permit 'controlled' urination.  The result is the strong likelihood that you will to urinate on yourself and any clothing (pants) below.  Could be an embarassing situation, if you are anywhere other than in the privacy of your own home.

To summarize, so far, so VERY good.  As Trew stated, it is definitely a game/life changer.  So far, I have no regrets whatsoever on my decision to have this device implanted in me.

I'll provide future updates, as I learn more, and have more to share.

Josephg

 

spark plug's picture
spark plug
Posts: 10
Joined: Mar 2013

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

 

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