AMS 800 artificial urinary sphincter

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  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    #82
    Trew said:

    OK, What IF.......
    Now I am starting to play mind games with myself about having a AUS installed, such a, What IF some one tied you to a tree and left you (like a robber)? My wife says, "Like how often has that happened?" But there are other supposes that could happen, a fall on the trail and you are left unconscious for hours. Then your bladder would explode.

    Silly stuff like that enters my mind.

    There is a 10- 20% failure rate- and I have been moving in on the wrong side of those perscentages since starting this whole cancer thingie.

    So what if.......

    And can they install this device in females and if so, where do they have the activation button? This inquiring mind wants to know.

    If tied to a tree...
    I'm also on the wrong side of the percentages. However, my AUS has given me my life back. About being tied to a tree -- I still have a bit of stress incontinence. If I sneeze hard or go to the gym and work on the weight machines, I dribble and have to wear a liner. So, I would assume if I really had to go (being tied to a tree and all), I could put a little pressure on my bladder and go. As I understand it, the doctor has to make certain decisions about cuff pressure -- too little and you will leak, too much and it could lead to tissue erosion. So, the cuff isn't supposed to have a "death grip" on your urethra.
  • Trew
    Trew Member Posts: 932 Member
    #83
    Skid Row Tom said:

    If tied to a tree...
    I'm also on the wrong side of the percentages. However, my AUS has given me my life back. About being tied to a tree -- I still have a bit of stress incontinence. If I sneeze hard or go to the gym and work on the weight machines, I dribble and have to wear a liner. So, I would assume if I really had to go (being tied to a tree and all), I could put a little pressure on my bladder and go. As I understand it, the doctor has to make certain decisions about cuff pressure -- too little and you will leak, too much and it could lead to tissue erosion. So, the cuff isn't supposed to have a "death grip" on your urethra.

    I emailed the company and
    I emailed the company and asked if they have a list of recommended doctors. probably expecting too much.

    I am starting to find this decision as hard as the one about getting surgery.

    How does one find out if Dr Bour in Kalamazoo is as good as the medical team at the U of Michigan?

    This has to be done right.
  • ob66
    ob66 Member Posts: 227 Member
    #84
    cgerhardt said:

    What ifs
    Trew,
    I share your feelings. I am scheduled for an AUS July 8th. I am having those thoughts all the time but then I end up changing a pad and/or underware and/or slacks and come back to reality. I don't want to continue this way. I had a sling implanted in February and in six weeks I was back to where I started. I have resigned myself to the fact that the aus is the best last hope to get closer to dry. I have tried everything and just seem to be in that bad percentage of the bell curve. The other helpful thing has been listening to a lot of guys on healingwell.com that have the aus and the are happy as they can be.....so perhaps our feelings are just normal but not warrented....except for the recovery time/pain.
    I am starting a thread on healing well to track my AUS surgery experience journey if you want to follow it. Are you scheduled yet or just in the considering stage?

    Hang in there
    I am not through the process yet, but listen to SkidRowTom. It is unfolding the way he described. It wasn't easy. My catheter removal involved a back-up and a re-catheterization. It was removed again Monday and I was able to urinate. Thank goodness. There are a few things in life (eye surgery, catheterization) that scare me. Unrealistically you might say, but nevertheless raise fear. For two days and nights now I have been peeing. And when I remember being incontinent and wishing for same to stop, I am so thankful that incontinence has restarted after cath removal. I think I am mostly through this process. Your scrotal sacs and penis swell beyond imagination, turn plum, then near black, but then start to go down. The sutures are uncomfortable at best. In midstream I almost wish I had never had the AUS installed, but now, nine days post op, I know I made the right decision. SkidRowTom tells it like it is. It is not easy, but a week or two is small in the greater scheme of things. I hope this helps, that is my only reason for posting.
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    #85
    ob66 said:

    Hang in there
    I am not through the process yet, but listen to SkidRowTom. It is unfolding the way he described. It wasn't easy. My catheter removal involved a back-up and a re-catheterization. It was removed again Monday and I was able to urinate. Thank goodness. There are a few things in life (eye surgery, catheterization) that scare me. Unrealistically you might say, but nevertheless raise fear. For two days and nights now I have been peeing. And when I remember being incontinent and wishing for same to stop, I am so thankful that incontinence has restarted after cath removal. I think I am mostly through this process. Your scrotal sacs and penis swell beyond imagination, turn plum, then near black, but then start to go down. The sutures are uncomfortable at best. In midstream I almost wish I had never had the AUS installed, but now, nine days post op, I know I made the right decision. SkidRowTom tells it like it is. It is not easy, but a week or two is small in the greater scheme of things. I hope this helps, that is my only reason for posting.

    You're almost home free
    Put your feet up and coast. The worst part's over. During the post-op, I also thought, "God, what have I done?" But after the doctor activated the AUS and I got the hang of it (no pun intended), I was unbelievably grateful that I could engage in "normal" activities. I had to give up riding my bicycle (too much pressure on certain areas) and am rather anxious if little kids or jumping dogs are around, but now the whole day is wide open. In fact, I'm leaving in mid-June on a 7500 mile coast-to-coast motorcycle trip (not my first), but improbable or impossible with out my AUS.

    By the way, make sure you order some type of medical I.D. I usually wear a dog tag, but also have a bracelet that I seldom wear. I found a good selection of high quality medical I.D.'s at AmericanMedical-ID.com.
  • Trew
    Trew Member Posts: 932 Member
    #86
    Post AUS Surgery- Important Q
    I am trying to plan my activities/work schedule for this fall. I am an office type worker. Can I stand and give presentations to groups 3 weeks after surgery? Or is that pushing recovery? I undertand getting an AUS installed may be a bit more uncomfortable and time consuming that the devinci was to get the prostate out. I am trying to make palns now and I could use some advice.
  • ob66
    ob66 Member Posts: 227 Member
    #87
    Trew said:

    Post AUS Surgery- Important Q
    I am trying to plan my activities/work schedule for this fall. I am an office type worker. Can I stand and give presentations to groups 3 weeks after surgery? Or is that pushing recovery? I undertand getting an AUS installed may be a bit more uncomfortable and time consuming that the devinci was to get the prostate out. I am trying to make palns now and I could use some advice.

    10 days out Trew, and I
    10 days out Trew, and I think I can answer your question. I still feel uncomfortable from the swelling (which has gone down tremendously) and the suture sites. Getting up and down is a bit tough, especially from a sofa. I plan to teach a class for an hour and a half next Monday (14 days out) and think I will be just fine. If you can do things that give you a break now and then it would be best. I couldn't imagine having to be on my feet all day with no break, etc. but other than that I think you can function well. Quite frankly, I am going a bit stir crazy 10 days post op, and you can guess that means I don't feel all that badly. No driving in the first 2-3 weeks though.
  • Trew
    Trew Member Posts: 932 Member
    #88
    ob66 said:

    10 days out Trew, and I
    10 days out Trew, and I think I can answer your question. I still feel uncomfortable from the swelling (which has gone down tremendously) and the suture sites. Getting up and down is a bit tough, especially from a sofa. I plan to teach a class for an hour and a half next Monday (14 days out) and think I will be just fine. If you can do things that give you a break now and then it would be best. I couldn't imagine having to be on my feet all day with no break, etc. but other than that I think you can function well. Quite frankly, I am going a bit stir crazy 10 days post op, and you can guess that means I don't feel all that badly. No driving in the first 2-3 weeks though.

    That sounds doable to me.
    That sounds doable to me. Here i am jumping up and down in my corner yelling, "Do me next, do me next!" I really do envy some of the guys who are 3- 4 weeks out and everything is working for them.
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    #89
    Trew said:

    Post AUS Surgery- Important Q
    I am trying to plan my activities/work schedule for this fall. I am an office type worker. Can I stand and give presentations to groups 3 weeks after surgery? Or is that pushing recovery? I undertand getting an AUS installed may be a bit more uncomfortable and time consuming that the devinci was to get the prostate out. I am trying to make palns now and I could use some advice.

    I'm trying to remember three years back. I had surgery over Christmas break and was back to work around January 10th. It seems like I had 3-4 weeks to recover. You should be OK for an hour or two, but I wouldn't want to stand or sit all day. Remember too, you will still be incontinent. You'll feel much better about everything when they push the magic button.
  • ob66
    ob66 Member Posts: 227 Member
    #90
    Skid Row Tom said:

    I'm trying to remember three years back. I had surgery over Christmas break and was back to work around January 10th. It seems like I had 3-4 weeks to recover. You should be OK for an hour or two, but I wouldn't want to stand or sit all day. Remember too, you will still be incontinent. You'll feel much better about everything when they push the magic button.

    Fifteen days post surgery
    Getting to the point where I am glad to have had this surgery, and can't wait to activate. However, a strange thing has happened that I wonder if others have experienced. Since the final catheter removal, my stream is finer, a little bit harder (diaphragmatic help) to urinate, but lo' and behold I am near continent without activation. I was glad to be down to 3-4 pads a day pre-AUS surgery. And those were full pads. Now I am 1-2 pads depending on the day and the desire for complete hygiene at any one moment. Really at a point where it is very liveable even without activation. Do you remember Skid Row Tom???
  • Trew
    Trew Member Posts: 932 Member
    #91
    ob66 said:

    Fifteen days post surgery
    Getting to the point where I am glad to have had this surgery, and can't wait to activate. However, a strange thing has happened that I wonder if others have experienced. Since the final catheter removal, my stream is finer, a little bit harder (diaphragmatic help) to urinate, but lo' and behold I am near continent without activation. I was glad to be down to 3-4 pads a day pre-AUS surgery. And those were full pads. Now I am 1-2 pads depending on the day and the desire for complete hygiene at any one moment. Really at a point where it is very liveable even without activation. Do you remember Skid Row Tom???

    Thanx for the Update
    That is encouraging news, ob. Keep posting on your progress- please.
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    #92
    ob66 said:

    Fifteen days post surgery
    Getting to the point where I am glad to have had this surgery, and can't wait to activate. However, a strange thing has happened that I wonder if others have experienced. Since the final catheter removal, my stream is finer, a little bit harder (diaphragmatic help) to urinate, but lo' and behold I am near continent without activation. I was glad to be down to 3-4 pads a day pre-AUS surgery. And those were full pads. Now I am 1-2 pads depending on the day and the desire for complete hygiene at any one moment. Really at a point where it is very liveable even without activation. Do you remember Skid Row Tom???

    "Control" after surgery
    Yes, you jogged my memory. As I recall, I had more control awhile after surgery. Then, it was back to "normal" (leaking). My theory was that things were good and swollen in there which created enough pressure to hold things back. As the swelling dissipated, the leaking returned. Not what you wanted to hear -- and I hope your experience is different.
  • Trew
    Trew Member Posts: 932 Member
    #93
    Skid Row Tom said:

    "Control" after surgery
    Yes, you jogged my memory. As I recall, I had more control awhile after surgery. Then, it was back to "normal" (leaking). My theory was that things were good and swollen in there which created enough pressure to hold things back. As the swelling dissipated, the leaking returned. Not what you wanted to hear -- and I hope your experience is different.

    Good heads up on all of
    Good heads up on all of this. I hate medical surprises- I have had enough of them!
  • flyfisherdon
    flyfisherdon Member Posts: 5
    #94
    Trew said:

    Good heads up on all of
    Good heads up on all of this. I hate medical surprises- I have had enough of them!

    I also seemed to have more
    I also seemed to have more control prior to the activation, made me wonder if I had jumped the gun to get the AMS800.
    Now almost 2 years to the day, since I had it installed, have to say it was the best thing to have had done.I had contemplated a sling, but my leaking was too bad.
    My findings are similar to Skid Row Tom.
    I was looking on Google for a bicycle seat that would not activate the AUS while riding.
    I had bought one with a hole in the middle, but it did not work well, so I am wondering if anyone on here has found a seat that does not compress the cuff?
    I do find that I need to wear a VERY light pad per day, but mostly from impatience after voiding, not waitng sufficient time for the cuff to fill up completely. MUCH better than the 4-5 pads per day before the AUS.
    Finding the correct Uro to install it is a must! I would recommend finding one that has done a lot of them, and can adjust the tube length properly.
    I had mine done at the University of British Columbia Hospital( a teaching hospital)Urodynamics test and cystoscopy don't bother me, the Uro lets me see on the monitor what he is seeing, so I can ask questions as he does it.
    Don
  • harvs
    harvs Member Posts: 54
    #95
    flyfisherdon said:

    I also seemed to have more
    I also seemed to have more control prior to the activation, made me wonder if I had jumped the gun to get the AMS800.
    Now almost 2 years to the day, since I had it installed, have to say it was the best thing to have had done.I had contemplated a sling, but my leaking was too bad.
    My findings are similar to Skid Row Tom.
    I was looking on Google for a bicycle seat that would not activate the AUS while riding.
    I had bought one with a hole in the middle, but it did not work well, so I am wondering if anyone on here has found a seat that does not compress the cuff?
    I do find that I need to wear a VERY light pad per day, but mostly from impatience after voiding, not waitng sufficient time for the cuff to fill up completely. MUCH better than the 4-5 pads per day before the AUS.
    Finding the correct Uro to install it is a must! I would recommend finding one that has done a lot of them, and can adjust the tube length properly.
    I had mine done at the University of British Columbia Hospital( a teaching hospital)Urodynamics test and cystoscopy don't bother me, the Uro lets me see on the monitor what he is seeing, so I can ask questions as he does it.
    Don

    Seat
    I use the Easyseat II form Hobson - works geat.
  • flyfisherdon
    flyfisherdon Member Posts: 5
    #96
    harvs said:

    Seat
    I use the Easyseat II form Hobson - works geat.

    AMS 800
    Harvs, thanks for the info on the Hobson, I have ordered one, and it is "In the mail"
    My wife and I are celebrating our 50th Anniversary at the end of this month, and are taking a trip to Europe, so probably will have more time to test it when we return.
    Don
  • hightide
    hightide Member Posts: 26
    #97
    flyfisherdon said:

    AMS 800
    Harvs, thanks for the info on the Hobson, I have ordered one, and it is "In the mail"
    My wife and I are celebrating our 50th Anniversary at the end of this month, and are taking a trip to Europe, so probably will have more time to test it when we return.
    Don

    AMS 800 and Three piece penile implant.
    I am a new member (just found this site this week ) I had both the AUS & the implant put in June 23rd. I am now 24 days post op and am wondering when I should be able to feel the two new toys that have been added to the marble sack ? Still have some swelling but not anything like the first two weeks! I am scheduled to activate August 11 , will the tenderness be gone by then ?
  • Trew
    Trew Member Posts: 932 Member
    #98
    hightide said:

    AMS 800 and Three piece penile implant.
    I am a new member (just found this site this week ) I had both the AUS & the implant put in June 23rd. I am now 24 days post op and am wondering when I should be able to feel the two new toys that have been added to the marble sack ? Still have some swelling but not anything like the first two weeks! I am scheduled to activate August 11 , will the tenderness be gone by then ?

    Hightide, keep us posted on
    Hightide, keep us posted on your progress, ok. I am scheduled to see this doctor on Aug. 303:

    http://www2.med.umich.edu/healthcenters/provider_profile.cfm?individual_id=110473

    I have to get a stricture problem fixed first, then can get an AUS installed- I hope I can get this all done by Xmas of this year. I have never even considered the other implant. The Eligard still has me all messed up in that area. I have no idea if that will ever work again or not.
  • hightide
    hightide Member Posts: 26
    #99
    Trew said:

    Hightide, keep us posted on
    Hightide, keep us posted on your progress, ok. I am scheduled to see this doctor on Aug. 303:

    http://www2.med.umich.edu/healthcenters/provider_profile.cfm?individual_id=110473

    I have to get a stricture problem fixed first, then can get an AUS installed- I hope I can get this all done by Xmas of this year. I have never even considered the other implant. The Eligard still has me all messed up in that area. I have no idea if that will ever work again or not.

    Conitnuing progress
    Trew, I will post my progress as often as I can. I sure am glad I found this forum and I hope some of the guys that have had this for a while and any that are further along than I am will answer some of the questions that come up now and then. I had my DiVinci done by Dr. Randy Fagin with the Urology Team in Austin Texas. I was almost dry until the radiation therapy, then the the wet season came and was not getting better. Went back to the Urology Team and had the implants put in by Dr. Bryan Kansas. This team is a great bunch of urologists (five men & two women)each with a special area of intrest. I think Dr. Fagin was number eight in the country on DiVinci back in 2007 when he did mine. Last month Dr. Kansas put both of my implants in at Saint Davids outpatient surg. center. He started at 9:00 am and I was back at the hotel at 3:30 pm. Went to his office on Thur.(the day after surgery) and left for home on Fri. (Home is eleven hours away). Dr. Kansas called and got my local urologist to just check me two weeks post op and also set up for him to activate the implants Aug. 11. Now I am just in a holding pattern and have not had any problems (knock on wood) so far.
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    #100
    hightide said:

    AMS 800 and Three piece penile implant.
    I am a new member (just found this site this week ) I had both the AUS & the implant put in June 23rd. I am now 24 days post op and am wondering when I should be able to feel the two new toys that have been added to the marble sack ? Still have some swelling but not anything like the first two weeks! I am scheduled to activate August 11 , will the tenderness be gone by then ?

    AUS info
    Hello everybody and welcome Hightide.

    I've had an AUS since early 2007. I've been absent from the board for about four weeks because I just got back from an 8,000+ mile motorcycle trip across country -- unthinkable without the AUS. I'm unsure about the "two new toys" -- I have one -- the pump that is now in the bag with the marbles. By August, you should be able to feel the pump and the tubes leading into it. It would REALLY help if your doctor had a model of an AUS so you could feel what you're searching for. My doctor didn't, and all I had were pictures. It took me a while to figure it out. At some point, you'll be able to feel the "reservoir" -- it's about ping ball size -- mine is on the right side about where the appendix is. You can't see it, but if you press on your skin, you can feel it. You won't be able to feel the cuff, but if may cause minor discomfort from time to time. It took me about 6 months for the tenderness to totally wear off and for me to come to the realization that this is the new normal for me and to make certain adaptations. Make sure you order a medical ID. Any questions -- just ask.
  • hightide
    hightide Member Posts: 26
    #101
    Skid Row Tom said:

    AUS info
    Hello everybody and welcome Hightide.

    I've had an AUS since early 2007. I've been absent from the board for about four weeks because I just got back from an 8,000+ mile motorcycle trip across country -- unthinkable without the AUS. I'm unsure about the "two new toys" -- I have one -- the pump that is now in the bag with the marbles. By August, you should be able to feel the pump and the tubes leading into it. It would REALLY help if your doctor had a model of an AUS so you could feel what you're searching for. My doctor didn't, and all I had were pictures. It took me a while to figure it out. At some point, you'll be able to feel the "reservoir" -- it's about ping ball size -- mine is on the right side about where the appendix is. You can't see it, but if you press on your skin, you can feel it. You won't be able to feel the cuff, but if may cause minor discomfort from time to time. It took me about 6 months for the tenderness to totally wear off and for me to come to the realization that this is the new normal for me and to make certain adaptations. Make sure you order a medical ID. Any questions -- just ask.

    AUS nfo
    Hey Tom, Thanks for the welcome and your input on my questions. I am just a little nervous about how things will go when I go to get every thing turned on in Aug. Don't want them doing a lot of adjusting if you know what I mean.

    Glad to hear that you are doing well and that motorcycle trip sounds awsome. I also ride. I have a 2003 Harley Springer Softail. The leaking had ut me down to just short trips but I am hoping that when I get over the surgery and heal up I can get back to some longer rides.

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