HealingWell
Search Close Search
☰

Is Artificial Urinary Sphincter for me?

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/6/2021 1:57 AM (GMT 0)
I had RP 18 months ago and still need 5 or 6 Depends a day. My surgeon referred me for an AUS consultation and I had an exam that indicated I would be a good candidate. Scheduled for a different exam next month.

I'm 76 and very active, living in Lake Tahoe and taking advantage of all it offers--skiing, hiking, walking my Lab twice a day, swimming and biking. I understand that biking is discouraged, but I wonder if anyone's developed an ergonomically appropriate seat for AUS?
Posted 10/6/2021 1:52 PM (GMT 0)
Dr. suggested a recumbent bike for my husband after his AUS surgery. He opted for a split seat on his regular bike instead. He's had his AUS for 7 years and it continues to work for him. There's always been some minor leakage with movements that put pressure on the device. That surgery was a life changer for him. Best of luck!
Posted 10/6/2021 5:47 PM (GMT 0)
I got my AUS 2 years ago. I wasn’t told that I had any restrictions except to avoid doing things that would put undue pressure and distortion on the cuff.. When I got on my bike, the pressure from the split seat that was on it opened the cuff and emptied my bladder. I went to a bike shop and tried LOTS of different seats there and ended up getting one that looks like the wide ones that used to come with our 3-speeds 40-years ago. It works fine. Plus, I have it tilted as far forward as it will go.
Posted 10/6/2021 6:45 PM (GMT 0)
Thanks, VinceIn MT and DYank,
I appreciate hearing your perspectives. I’m about 80% sure I’m going to have the AUS and your reports are encouraging.
Posted 10/6/2021 8:40 PM (GMT 0)
Tahoe, welccome to the forum. I have no advice as i have no experience in that area, but stay tuned others will chime in over the next day or two, or three. Good luck. And good on ya for living in one of the most magnificent parts of the country. I used to vacation at Incline Village and loved it (summers only, i dont ski)
Posted 10/7/2021 2:41 PM (GMT 0)

tahofish said...
Thanks, VinceIn MT and DYank,
I appreciate hearing your perspectives. I’m about 80% sure I’m going to have the AUS and your reports are encouraging.

I kept a daily journal about my recovery from the AUS surgery. It might be helpful while you think this over. While it is surgery and there is a recovery, I would go through it again without a doubt. Being dry is worth it.

You can read the journal here:
http://www.codecooker.com/projects_misc/aus/aus_report_2019.pdf
Posted 10/7/2021 5:13 PM (GMT 0)
I've had an AUS for 6 1/2 years. I had it installed at the same time as I had my umbilical hernia fixed and I can't really speak to the recovery from the AUS since it pretty much got lost in the hernia repair. So it probably wasn't bad but the hernia repair recovery was quite uncomfortable and I'm not sure I would have noticed if my foot has been chewed off by weasels.
I'm afraid I can't report that my AUS is as successful as the other guys here. I still leak four or five 'Guards' a day. (Guards are the high absorbent pads that go inside of regular big-boy jockey shorts.) I was hoping for dry so that's been a disappointment but the AUS reduced my leak from five or six Depends a day (the pull-up adult diapers) to smaller pads I can wear with ordinary clothes. Two Guards will fit in my back pockets and with those on hand I am good for the day. It (mostly) gave me back my life.
I am glad I had it installed and I am considering adding a second cuff to see if I can't do even better.
Posted 10/10/2021 1:42 AM (GMT 0)
I hike/backpack a lot... The AUS (AMS 800) changed the ballgame for the better for me! Total change in quality of life not having to worry about excessive leakage. A small pouch pad (Coloplast 4200B) will catch the occasional drip... especially during strenuous activities. Not unusual for a pad to last for 2-3 days in a pinch.

pasayten
Posted 10/10/2021 4:27 AM (GMT 0)
This is really helpful. Thanks for you who responded and I’d appreciate many more comments. You’re helping me feel confident.
Posted 2/28/2022 1:31 AM (GMT 0)
Hello all, just want to say thank you for all your posts as it helped me prepare for my AUS surgery this past Friday! Two days in and pretty much fits the norm. Abdominal soreness, black and blue double the size scrotum, and constipation seems like what most experience and that is me right now. Doctor was great and totally upfront with me about everything. Now the recovery and just need to be patient I guess. Got to admit it is scary when what I see and feel down there, but hoping and praying for a better quality of life. I am 15 years post radical prostectomy and cancer free since surgery and definitely thankful for that. Have had SUI entire time but has gotten worse in last couple years. Don’t know why I waited so long for this, but maybe just wishful thinking things would get better and I just dealt with it. Hoping this will be a new chapter in life to maybe stay a little or a lot dryer. See doc on March 7th for follow up and my 6 weeks will be around April 8th. Hoping to feel a little better everyday. Hope everyone else is doing well and safe!
Posted 2/28/2022 3:56 AM (GMT 0)
Jcm60...

Congrats on taking the steps to greatly improve the quality of your life! You will do great and when the valve is "turned on", you will be amazed... smile

pasayten
Posted 2/28/2022 10:37 AM (GMT 0)
Thanks Pasayten as I believe what doesn't kill us can Make us stronger. Just figures we have to go through this experience ro make us better so I am confident this outcome will be good. Being diagnosed with C at 46 with a psa of 4.6 was hard. Went to Miami to have it removed with Dr Kongrad. C was found in both sides but was contained and all my psa tests have been <.01 since. I totally believe that catching it early saved my life. Have not let SUI stop me but hoping for an even better future. Hope you are still doing well and enjoying life. Got to live everyday!
Posted 2/28/2022 3:04 PM (GMT 0)
I've had mine five years and have had some complications but is still far better than before. Now I'm having it replaced sometime within the next year and not looking forward to going thru that for a third time. But I've been thru a lot of surgeries already. I hope yours works out well for you. Good luck and keep your eye on the prize.
Posted 2/28/2022 10:04 PM (GMT 0)

tahofish said...
I had RP 18 months ago and still need 5 or 6 Depends a day. My surgeon referred me for an AUS consultation and I had an exam that indicated I would be a good candidate. Scheduled for a different exam next month.

I'm 76 and very active, living in Lake Tahoe and taking advantage of all it offers--skiing, hiking, walking my Lab twice a day, swimming and biking. I understand that biking is discouraged, but I wonder if anyone's developed an ergonomically appropriate seat for AUS?

i was an avid cycle for many years. unfortunately i injured my perineral nerve. after a few years off and trying several different bike seats this one worked perfectly for me.

https://www.spiderflex.com/
Posted 2/28/2022 10:48 PM (GMT 0)
Thanks Rob and F8! Day 3 and may have overdone my schedule today as felt better this morning but very sore this afternoon. Not going back to work till next week so will just try to take it easy till then. Swelling seems to be going down a little so I guess there was some positive today. Very difficult for me to sit still but will do some binge tv watching lol. My wife has been great and taking good care of me so thank god for her. Everyone stay safe out there!
Posted 3/1/2022 11:57 PM (GMT 0)
Sure hope yours goes as well as mine did. I had the surgery November 3 and had it turned on January 13. The holidays made finding a date good with me and the doc postpone turning it on. I took the pad off in the doc office when he turned it on and have not had one on since. I am amazed at how well it works. I was using 6 to 8 pads a day which really sucked. The surgery was very uncomfortable for a couple of weeks but well worth it. Rob Lee, I sure hope you get yours fixed out. You sure deserve it with all you have been thru. It truly was life changing for me.
Posted 3/2/2022 2:16 PM (GMT 0)
Thanks Noggin, and that's great news that yours is doing good. Yes Rob I hope things get better for you. Wow so did you have it turned on this year Jan 13th? I am on day 5 now and not sure if I over did it as lower incision that is longer than I thought it would be, is hurting a little more than last couple days. It looks ok with a mirror but don't see doc again till Monday. Will have to take it a little easier today I guess. Tried to call doc to as if I should use ice and donut pillow but can't get anyone. Will try again today. Thank you so much for sharing your experience and positive thoughts!
Posted 3/2/2022 2:43 PM (GMT 0)
Yes I did get it turned on this year. I did use some ice early on when things got swollen and ached a lot. I also used a donut cushion some if I was sitting a lot or out boating. My doc put the fear of god in me about lifting anything more than 10 pounds until I was turned on. He said any of the stuff he put in could pop out if I did and fixing it would be painful and a longer healing process. I believed him and didn't cheat until the last couple of weeks.
Just take it easy and don't over do it. You can come unglued!
Best of luck,
Nog
Posted 3/2/2022 4:16 PM (GMT 0)
Thanks Nog, sounds about same for me. Icing some which I think is helping with swelling. Can only use donut some as too much starts to get uncomfortable. Yea nothing over 10lbs also for me. Hoping to to go back to work next week. I was wearing the depends underwear which was good protection but would get soaked three times a day at work as I am pretty active so praying things get better I would not let all that stop me from living so a good outcome would be awesome!! Timing should be about right, can't put boat in water here in Delaware till April so hope healing goes well so will be ready for some boating then. So glad things going good for you and others on here!
Posted 3/2/2022 6:22 PM (GMT 0)
Any recommendations for a Urologist/Surgeon for AUS surgery in the Atlanta area?
Michael
Posted 3/2/2022 8:41 PM (GMT 0)
Hi Michael, I went on this website https://www.fixincontinence.com/treatment-options/ams-800/ and then clicked on find a specialist and put in my zipcode and that is how I found my doctor. Hope this helps!
Posted 3/2/2022 9:45 PM (GMT 0)
Thanks, I will check that out.
Michael
Posted 3/3/2022 2:40 PM (GMT 0)

Jcm60 said...
Yes Rob I hope things get better for you.

Noggin2u2 said...
Rob Lee, I sure hope you get yours fixed out. You sure deserve it with all you have been thru. It truly was life changing for me.

Thank you both very much! The AUS works okay for me, and is certainly much better than the near total incontinence previously. First surgery was traumatic, only to require immediate replacement and go thru that all over again. I figure I should plan replacement now while I am still fairly young (72) as waiting a few more years might make surgery more risky and recovery more difficult, and I want to be prepared in advance and not wait for it to become an emergency.

60Michael said...
Any recommendations for a Urologist/Surgeon for AUS surgery in the Atlanta area?
Michael

I was told in another group that the AUS "guru" is Jeffrey Brady in Orlando. Last year I intended to pay him a visit as we all had hoped that COVID would be over with by then. Now I'm thinking the guy at USF in Tampa might be just as good. I just want to experience the AUS surgery the way it's supposed to be and not the total pooch screw that I had before.

Michael, there is probably someone at Emory or some other of the large facilities in Atlanta. I have made the drive thru Atlanta to central Florida and back many times... decades, in fact. It's not a bad drive, other then Atlanta itself, just very long.
Posted 3/4/2022 11:54 AM (GMT 0)
My brother had prostate surgery January 12, 2022. I had it in 2009. He is still leaking pretty bad, seeing little improvement. I really had no issues and still have only miniscule leaking. What is he facing, if someone could outline . I am trying to get him to use this site, which was very helpful to me.
I used Dr. Powsung at Moffit Cancer Center in Tampa Florida
Posted 3/4/2022 12:45 PM (GMT 0)
Joe, since your brother is only two months post-op his system is still recovering from the trauma of surgery and he should not expect much improvement in his incontinence just yet. At 3-4 months he should start to see some improvement, and if not then his urologist might recommend physical therapy with a nurse specialist training in doing proper Kegel exercises. Generally he should see noticeable improvement at around six months, and if there is no improvement by nine months post-op then it likely won't get any better. Some men report improvement between 12-18 months but that is not common. At the 9-12 month point he should be looking into how he intends to live the rest of his life, whether it's with pads, condom cath and leg bag, or AUS implant. But again, most men have regained control by 6-9 months and many find that they must continue to do the Kegel exercises daily thereafter.
✚ New Topic ✚ Reply
12