HealingWell
Search Close Search
☰

AMS 800 pros-cons

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/17/2014 6:49 PM (GMT 0)
Good Afternoon everyone,
This is my first time using this forum so, I hope I can get some helpful advice from the community.

First off, I did not have prostate cancer, but I had BPH for many years prior to an automobile accident which caused a T-12 spinal cord injury and subsequently made me a paraplegic. My injury occurred in May of 2005 and as a result, I have had flaccid bladder and bowel. I have been self catheterizing using various products for the past 9 years or so. In 2013, my prostate became more enlarged and self cath was no longer possible and I have had a Foley indwelling until June 2014. I had an open prostatectomy and as a result, I now am incontinent. I have had to have a Foley reinserted since condom catheters and/or absorbent pads have not been a satisfactory solution.

I met with my Urologist a week ago and he suggested the AMS 800 as a possible solution. I have the dexterity in my hands to manipulate the pump but, I'm concerned about a couple of issues which has prompted this PLEA for help from the wider community.

First, I have heard that one of the side effects is possible tissue erosion at the cuff site. Second, that many times the cuff does not stop the leaks. Third, it may still require me to insert a catheter in order to fully empty my bladder, which could possibly cause damage to the urethra and/or to the cuff. That would be a significant difficulty.

Is there anyone out there who is also a paraplegic who has had an AMS 800 installed? Can you please post a reply(s) so I can get a wider view of the pros and cons of having this procedure?

Regards,
OldT12Para
Posted 9/17/2014 11:53 PM (GMT 0)
Sorry to read your post and see the problems you have been dealing with. I am not paraplegic so I can't help you there but I just got a AMS 800 AUS installed in April and will try to tell you what I know of an AUS.

1) I understand that a small percentage of patients may have some erosion issues. I haven't. But that can be corrected. At least one of our forum members had that problem and he will probably show up here soon to help you.

2) about the cuff, I still leak a little when I squat, throw something, stand up quickly but I never use more than a thin pad a day.

3) You should never insert a catheter when you have an AUS until you de-activate it. The doctor can teach you how to de-activate it. It only takes a minute.

An AMS800 AUS is the "Gold Standard" for helping men end incontinence. I went from 3-5 pads a day to 1 thin pad. The success rate is in the 90+% range. It starts working 6 weeks after it is installed, problem solved.

Almost everyone I have heard of who has had an AUS installed is very happy with it and would do it again, only sooner, if they had the chance.

You have a lot going on in your life. It sounds like a great solution to improve your quality of life. Talk to your doctor or a urologist who has done many AUS surgeries to see if it is something that could work for you.

I hope I helped in some way. My AUS brothers will be showing up soon to support you in any way they can.

Take care of yourself brother

Bill from Florida cool
Posted 9/18/2014 2:30 AM (GMT 0)
I confirm what Bill said. I have had my AMS 800 for over 4 years. I was a classic case of RP that never returned to continence. I started pretty much dry and have gradually returned to one pad that will last all day regardless of activity or amount of fluids consumed. I eat and drink whatever I want.
We have all read about cuff erosion in a small portion but that is not sufficient reason to avoid Aus.
You do have different issues so follow the advice of your URO and don't be afraid to get second opinions.
Bottom line is that AUSnis the best possible solution to sever incontinence whatever the cause.
Posted 9/18/2014 2:51 AM (GMT 0)
Big Mac and Tallguy,
Thanks for the replies!!! The positive is that it DOES seem to pretty much solve incontinence. I'm still worried about the residual urine that may require a catheter to finish drain process.

How long does the cuff stay open before closing up again?
OldT12Para.
Posted 9/18/2014 4:20 AM (GMT 0)
20-30 seconds or so. But, you can just give another squeeze after that for longer. Or you can just lock it open if you master how to do it. I have never locked mine open after the doc showed me how but I could do it if I read the directions again.
Posted 9/18/2014 12:32 PM (GMT 0)
Like Tall Guy said, the cuff stays open way long enough to empty your bladder and you can always give it another squeeze to open it again.

The main point is IT WORKS, and it has worked since about 1985 without much of a change.

I was just at my surgeon's office 2 days ago for a 90 day follow up and we talked about my possible need for salvage radiation in the future. I was concerned about the AUS being damaged by the radiation and I was told it could happen but could easily be repaired. The AMS 800 has so few parts they could be replaced if needed by outpatient surgery. In fact the installation of the device I had was outpatient. My surgery was about at 1:00 and I left the hospital by 5:00.

Bill from Florida cool
Posted 9/18/2014 3:35 PM (GMT 0)
As a result of the Vietnam War I am also a parapalegic in a wheelchair. Presently 82 years old working on a 100. I had DeVinci in April 08...successful but totally incontinent. I got an AMS800 in Jan 09. Still dry...

Prior to getting the 800 I had misgivings about my ability to exert sufficient pressure to the valve with my fingers to release the cuff when necessary. The nerve damage I suffered is progressive and moved into my hands and fingers sufficiently that I had and have difficulty buttoning my shirts. But my concern was unfounded and I have had no difficulty manipulating the valve of the AUS. I would advise that if you have reached the end of your rope with your incontinence then the AUS is the answer. Good Luck and if you need additional information let me know.

Salty
Posted 9/18/2014 4:54 PM (GMT 0)
Salty, thanks for the words of encouragement! I am a Vietnam era veteran also. My injury was just in 2005, so I have been in my chair for only nine years. Are you able to empty your bladder completely or do you have to use a catheter to completely empty out?
Posted 9/18/2014 6:02 PM (GMT 0)
My bladder empties completely with one or two squeezes of the valve. I usually wait a minute for it to empty completely and then it automatically closes. Never really ever had a problem with it. It becomes like second nature after the first few months.

Salty
Posted 7/15/2022 5:09 PM (GMT 0)
I was diagnosed with prostate cancer in January 2021. Had my prostate removed in April 2021. Well a small speck of cancer remained. Had Radiation therapy in June and July of 2021. In July 2022 my PSA is still zero (0). Incontinence is my problem now 4 to 5 pads a day. The drugs available don't work all that well, I have used 4. Went to my urologist they other day to see what my options were. He said the sling would not work for me because of the radiation treatment. He suggested the AMS 800. The surgery is scheduled for Oct. 2022. I asked about the life expectancy of the device. He said it varies. He had one patient that has had it in for 10 years. He told me if it stopped working that it could be replaced. He said it would be robotic surgery that lasted 2 hours. The device would be activated after 6 weeks, to allow for healing. Will have more info after the surgery and healing time. See you then.

Post Edited (mrfredcb) : 7/16/2022 8:42:25 AM (GMT-7)

Posted 7/16/2022 1:05 AM (GMT 0)
I had the same problem and had the AMS800 installed 3 years ago. I have zero regrets. I use ZERO pads. I kept a diary/journal about my recovery. I can post a link to it later as due to a big storm blowing through our power is out and I can’t remember the link address.
Posted 7/16/2022 7:06 AM (GMT 0)
I have an appointment at Cleveland for the AUS. My reading suggests the erosion issue is highest risk upon replacement of first AUS.
Posted 7/16/2022 10:59 PM (GMT 0)
Here's the link to my AUS diary/journal:

http://www.codecooker.com/projects_misc/aus/AUS_Report_2019.pdf

Yes, the erosion can be a concern. I read that some guys deactivate theirs at night to relieve pressure on the urethra but the literature doesn't really support that. I did express concern about that with my urologist and she suggested that the wear on tear on the poppet that really wasn't designed for daily use might cause failure of that part. After my surgery she said that after she measured my urethra it was between two of the sizes provided with the kit and she put the larger one in rather that the tighter one. So far, so good.
Posted 7/22/2022 4:07 PM (GMT 0)

VinceInMT said...
Here's the link to my AUS diary/journal:

http://www.codecooker.com/projects_misc/aus/AUS_Report_2019.pdf

Yes, the erosion can be a concern. I read that some guys deactivate theirs at night to relieve pressure on the urethra but the literature doesn't really support that. I did express concern about that with my urologist and she suggested that the wear on tear on the poppet that really wasn't designed for daily use might cause failure of that part. After my surgery she said that after she measured my urethra it was between two of the sizes provided with the kit and she put the larger one in rather that the tighter one. So far, so good.

Dr Wood at Cleveland?
Posted 7/22/2022 4:22 PM (GMT 0)
No, I had my RALP in Cleveland but had the AUS installed here in Billings, Montana.
✚ New Topic ✚ Reply