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

tpelle said:

Pain from AUS800

dga:  After both my first implant in January 2013 and later my replacement AUS800 implant in January 2015 I had continuing pain/irritation in the scrotum. The 100 mg/da Amitriptyline, later changed to 75 Nortriptyline were prescribed helped but did not eliminate the pain.  Finally about 20 months after the second surgery (last fall) I noticed the pain was gone. When I saw the surgeon three weeks ago I told her the pain had subsided several months ago and asked if I should stop the med.  She said not yet -- that it's probably the medication finally working.  Further, she said that at some point later on I can wean off the Nortriptyline to see if the pain returns.  I hope this helps.  tpelle

 

Thanks very much, tpelle. I'm at Mayo and saw doctor yesterday. Pain seems to be subsiding in the past 10 days, but not gone. He suggests OTC pain meds and believes it's still healing. But device was activated yesterday and seems to be working great. A little clumsy, but I'm sure I'll get used to it...I hope.

hap4174 said:

No regrets

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 

Nearly 2 years ago I had robotic surgery to remove my prostate. Following surgery I have had nearly continual incontinence and on average I've gone through 4-5 depends during the day and 1 or 2 in the evening. I read a comment on here where another individual with serious incontinence said it was the worst thing in his life and he hated every single pad, every leak and every moment he wasn't able to live a normal life. I know what he means. I detest this leakage; I have done all of the exercises and all of the other recommendations to no avail. I met with both my urologist and oncologist last week and both of them enthusiastically recommended the AUS 800 procedure. So, fellow sufferers I am heading into surgery on April 20th for the procedure. I have read everything pro and con, and at the end of the day I can't spend another year with endless depends on hand, and not a shred of normalcy. I sure hope I'll be as happy as many of you are who have done this procedure. I'll check back in following the surgery and share my thoughts going forward.

adwhiz said:

AUS is my next hope

Nearly 2 years ago I had robotic surgery to remove my prostate. Following surgery I have had nearly continual incontinence and on average I've gone through 4-5 depends during the day and 1 or 2 in the evening. I read a comment on here where another individual with serious incontinence said it was the worst thing in his life and he hated every single pad, every leak and every moment he wasn't able to live a normal life. I know what he means. I detest this leakage; I have done all of the exercises and all of the other recommendations to no avail. I met with both my urologist and oncologist last week and both of them enthusiastically recommended the AUS 800 procedure. So, fellow sufferers I am heading into surgery on April 20th for the procedure. I have read everything pro and con, and at the end of the day I can't spend another year with endless depends on hand, and not a shred of normalcy. I sure hope I'll be as happy as many of you are who have done this procedure. I'll check back in following the surgery and share my thoughts going forward.

adwhiz:  Please do check back and give us and those who may follow you an indication of your progress.  During the few days after April 20th you may be thinking why, oh why did I have this surgery. I did. Your testicles may be colorful and swollen, and you will have to deal with the dreaded catheter for a week or so. After removal of the catheter, as time approaches the activation date, the swelling and pain will have diminished greatly. All of the pain may not be gone by then, but your mind will be on learning the process of using the AMS800 pump --  stroking the pump two times or more to allow for a strong urine flow, yet not so many strokes that you have to wait at the toilet for for the balloon to fill the cuff and cut off any further flow.  In my case, one strong stroke of the pump and one short stroke is best for me.  Soon after activation you should be very happy with your decision to go with the AMS800.  tpelle

tpelle said:

adwhiz:  Please do check back

adwhiz:  Please do check back and give us and those who may follow you an indication of your progress.  During the few days after April 20th you may be thinking why, oh why did I have this surgery. I did. Your testicles may be colorful and swollen, and you will have to deal with the dreaded catheter for a week or so. After removal of the catheter, as time approaches the activation date, the swelling and pain will have diminished greatly. All of the pain may not be gone by then, but your mind will be on learning the process of using the AMS800 pump --  stroking the pump two times or more to allow for a strong urine flow, yet not so many strokes that you have to wait at the toilet for for the balloon to fill the cuff and cut off any further flow.  In my case, one strong stroke of the pump and one short stroke is best for me.  Soon after activation you should be very happy with your decision to go with the AMS800.  tpelle

Well, I am 48 hours away from my surgery. There have been times in the last week that I thought of cancelling this; that I could manage the incontinence, and that it would magically return to normal. Then I realize I am standing in line at Costco to purchase yet another huge box of depends (72 in a box.) That brings this all back into perspective and reminds me once again that I truly detest every part of the incontinence and I'll be so happy when the procedure is complete. I'm frightened (heck, I am scared!) but I'm hopeful of a successful placement and return to a life without pads, social limitations and unhappiness.

adwhiz said:

AUS800 surgery

Well, I am 48 hours away from my surgery. There have been times in the last week that I thought of cancelling this; that I could manage the incontinence, and that it would magically return to normal. Then I realize I am standing in line at Costco to purchase yet another huge box of depends (72 in a box.) That brings this all back into perspective and reminds me once again that I truly detest every part of the incontinence and I'll be so happy when the procedure is complete. I'm frightened (heck, I am scared!) but I'm hopeful of a successful placement and return to a life without pads, social limitations and unhappiness.

Well said. Mine is just four weeks away and I keep having the same thoughts. Scared. God I'm so scared. This is unlike any other surgery I've had before (and that's been about a dozen). The pain and swelling are to be expected. It's the strong possibility that the unit might fail, or require revision surgery to adjust size and placement, or perhaps just not be good enough to stop the leakage and still require a pad. I've met so many guys with that. Then there's the inevitable tissue erosion. I'm sure you've researched all of this yourself. None of us go into this lightly.

But it's got to better than what you (we) are going through now. So I wish you the best of luck, both on Thursday and in the six weeks or so to follow. Here's hoping for 100% success!

geo21 said:

ams 800

had ams implanted 6 weeks ago and activated 3 days ago. started perfect but have started to dribble when have bowel movement. worried beginning of problem or is this normal ??

GEO21

Normal for me. You may find some other activities will cause leaking.

adwhiz said:

AUS800 in place

Good morning, all --

Well, it's a done deal. I had the implant placed yesterday and from all indications everything went well. I have pain in the area, primarily around the stiches and it's difficult to get up from a chair. I talked to my doctor at length this morning before leaving the hospital and yes, there are pitfalls and concerns about the device. However, on average he said with care and proper procedures it's good for something around 10 years before any replacement. I can live with that. I've got 6 weeks ahead of me until it's activated so I'll check back in as I progress. Thanks for all of the encouragement, my friends. I do appreciate it.

Congratulations, and happy healing

Hoping to be joining you soon "on the other side"

geo21 said:

ams 800

had ams implanted 6 weeks ago and activated 3 days ago. started perfect but have started to dribble when have bowel movement. worried beginning of problem or is this normal ??

I've had my AUS activated since 2/13/17 and for the most part I'm pretty happy.  I will add however, that some stress on the surrounding area i.e. bowel movement or even stress of pain during certain movements.  For example, I broke my femur a few weeks ago and discovered that during those awkward moves from sitting to standing can cause some pain/strain and make everything tighten up a little causing a little leak.  Still it is light years better than before the AUS was installed.

You may also experience some issues as you slide off of a chair or car seat or any hard surface.  Again, still better than before the installation.  Try to time yourself for "pit stops" ( hour or so it varies) this will help you.  It won't eliminate that occasional leak; but, you will learn to adjust your movements a little as you learn the system.

Hope this helps?!  Good luck!!

B

RobLee said:

AUS is my next hope

Good luck! I hope everything goes well for you. I'll be right behind you... mine goes in May 22nd

Good morning --

So, you're a few days away from your big day. It'll be a challenge in the beginning and as many on here have noted it's going to take time to adjust to it all. Mine has been in for several weeks (June 5th is the magic activation day) and it's still hard to believe all of that equipment is inside me. Occasionally I feel a little pain but nothing to be concerned about. I've spent a fair amount of time fumbling around trying to imagine how it will work and all --

I really do wish you the very best in your own experience. Do let us all know how it works for you.

Cheers,

RobLee said:

Congratulations!

Congratulations, and happy healing

Hoping to be joining you soon "on the other side"

Today my friendly urologist activated my implant. I am so hopeful that this will be the solution to my endless (and awful) incontinence. I have mixed emotions at this point, and I suppose after two years of continual incontinence I'm just skeptical that this will really work. Believe me, I am ready and willing to go ahead with the new equipment and learn the best practices to use the implant as rapidly as is possible. In the meantime, I will keep everyone informed as to my progress.