Artificial Urinary Sphincter

Anybody have any experience with a Artificial Urinary Sphincter? I have 8 months since my radical prostratectomy (robotic) and have yet to see even the smallest hint of urinary control. before you ask, i started doing kegils about 2 months before my surgery and started with the physical therapist the day after my catheter was removed and worked with her for about 6 months until she had to admit that we had done everything she and her peers knew of. All of her tests showed good muscle function and control and that i had control of the muscles. I have some lower back issues and she and my Dr had me see a Neurologist to make sure i didn't have some odd nerve issue after MRIs on 2 sections of my back they found no connection to the incontenance (i have degenerative back issues). Talking with my Dr if i don't regain my contenance this would be the route but i still need to wait a full year for my surgery to fully heal before taking on another surgery.
i'm still hoping for the best i continue to do my kegils every day and do other pelvic floor exercises daily but my hope is starting to dwindle.So looking forward men getting this Artificial Urinary Sphincter seems to be a very small group and while i am getting info off the web, i was looking for any 1st hand knowledge

Thanks Bob

It appears that you may have neurogenic bladder. I have one due to a disc fragments hitting the nerve root but I have the opposite problem-retention. I found a urologist at the time who could diagnosis it. The neurologists didn't seem to have the urodynamic testing required. However that was in 2002. Columbia University Urology Department has some information on the sphicter and their folks who do the procedure around the country http://www.columbiaurology.org/adult-urology/urinary-disorders/neurogenic-bladder Also UCLA has been experimenting with a magnetic device that seem to be working for individuals with spinal cord injury to gain control of the nerves again. A good article on this in Science Daily https://www.sciencedaily.com/releases/2018/08/180822082648.htm. Good Luck!

69 yrs., marathon runner, 44 3D-CRT/IMRT Radiation delivered via 3D-CRT in 1.8 Gy minimum dose fractions to a total of 79.2 Gy., 10.5.18. PSA .012, 8.12.18, 1.42 June 18, 2018 (Lupron 5.21.18 & 8.15.18), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012. SpaceOar 9.6.18, testosterone <.7, 8.15.18, Tot Mayo 19 ng .17 testosterone Free 6.18.18, Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid, 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center w/o %. T3 MRI w/ contrast 1.8 lesion left side 5P, Neg. Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father PC age 78 RT & ADT now 94 yrs. Neurogenic bladder due to lumbar disk disease and recurrent bladder neck contracture with urinary retention man. 20 years doing catheterizations. TURP & scaring 2003, Finasteride 5 milligrams daily since 2002.

Bob - I am approaching two years with my AUS. My bladder was unreliable/unpredictable even after PT with the Kegel coach. Because my PCa had invaded surrounding tissues I required radiation post-op and the RT required a full bladder. So I had to start working on this decision around six months after the prostatectomy.

I did a lot of research and yet had a terrible experience with the AUS. Hence I generally do not tell the entire story to anyone newly considering the procedure. After all, it does dramatically alter how you do something that you do all day, every day for the rest of your life. But most guys have a good experience with their AUS. And I must admit that life with the AUS is far better than life without it.

Initially I found that I was the first (or only) person on the "other" PCa message board to require an AUS, which led me to joining HW two years ago. But the most valuable information was to be found on the American Cancer Society PCa forum. FWIW, I moderate an as yet very small AUS group on FB, and if interested you can read my story at Cancer Couple Blog.

Good luck to you on your journey going forward.

I truly hope this brings tremendous improvement for you!

Cashed Out said...

1 other thing, I now laugh at these guys that are so concerned about an erection. how many times a day do you use your erection, i'm dripping piss 24/7. and i don't get an erection anymore either. LOL

BTW, I wouldn't "laugh." There is a hierarchy of needs that human beings have. Sexual intimacy is pretty high, but I would agree with your underlying point that "the embarrassment, the anger, the hopeless feeling, the always smelling pee, the you can't sleep with your wife for fear of wetting the bed, etc. etc. (quoting you from elsewhere) is higher on anyone's hierarchy. Generally, I only use my erection once per day; "dripping piss 24/7" sounds awful.

Cashed Out said...

I'll get it turned on in 3 weeks. I'll let you know how it works. I'm pretty darned excited cause maybe in a month or 2 I'll have my life back.
1 other thing, I now laugh at these guys that are so concerned about an erection. how many times a day do you use your erection, i'm dripping piss 24/7. and i don't get an erection anymore either. LOL

I really hope it works well for you Cashed Out.

I understand what you mean about the continence and erection side. If I was told to choose between the 2, I'd take being continent in a flash. I've been lucky and have been continent, but you guys have been doing it tough. I really hope you see some improvement when it gets turned on.

Oh, you guys. it is so nice to be part of a forum that is support, honesty, understanding, humor and just plain honesty.
Blackjack- while sex is very important and since i don't get it anymore (and i work hard to keep it under mental control, hope i say this OK every part of the erection process (visual,ect) works except the erection, the car is in perfect working order it just won't spark)) i have found love and support is that lady in the chair next to me. she too is robbed of that form of sex and has never said a word never hinted that anything was wrong anything was missing or that anything has ever changed. I have gotten that kind of support through this entire journey. Better then any medicine. And something i hope all get.
You other guys, i appreciate your imput and thoughts. So right now i had the AUS installed on 7-10-19 on 7-16-19 (happy 66 birthady to me) they operated on my back (a Lapinestoryer (whatever they call it)) my AUS is scheduled to be turned on 7-29-19 and a 4-6 week recovery for my back. With the AUS i'm hoping to get down to maybe 2 pads a day and get my back pain down 50%+
Now if i can just get that lady in the next chair to cook.......... LOL.
Thanks guys
Bob

New to forum. Found this thru Inspire/bladder, which suggested I would find more info here on the AUS from guys who have had the surgery. Nov.2020 had the DiVinci robotic surgery. No nerve damage no incontinency. RT was recommended due to a lymph node involvement. No problems with incontinence except lifting something heavy or a strong sneeze. UNTIL Oct. 2022. Had blood in urine,saw urologist. he preformed a cysto, says he did not do anything just took a look into the bladder. WHAM INCONTIENT after that. At least 5 to 6 pads on a good day. He tried several pills, Botox nothing worked. Finally in June I told I could not live like this, I would rather be dead, isn't there any kind of procedure that could be done. Which brings me here. Saw a NEW urologist at MD Anderson Cancer Center in Jacksonville, Fl. She does not recommend the sling and went over the AUS device and procedure. Several things bother me, heck scare the sh.... out of me. I am almost 73 in fairly good health. Dr. said, start to finish about 3 hrs. under general anesthesia and she has done 30+ of the AUS procedures. Read the article Dr. Elliot suggested written by Dr. Sandhu et al on the learning curve for the AUS procedure and it recommends a surgeon with at least 200 operation, and one who does 20 to 30 a year. Where does one find such a Surgeon...LOL any in NE Fl.. Any ?'s you might suggest I ask on our next appt. that would help me make a decision that she is the right Dr. for me. And pain, recovery, quality of life, complications etc. All the newbie questions and concerns. Sincerely FL Jupiter

I’ve had mine for four years. I don’t know how many my uro had done but the surgery is not nearly like the RALP, more of a plumbing job. I went on YouTube and found a video that showed the surgery from start to finish and it looked pretty straight-forward and I felt that my uro could handle it, which she did. The “skill” is in selecting the correct size cuff but the instructions that come with the device fully explain how to do that.

I’d suggest you go to the manufacturer’s website and dig up the instruction sheet and read through it and watch a video of the surgery. Then ask your uro any questions that remain.

Check out my past posts several years ago. If you prefer pm me at xxxx@xxx and I’ll be glad to have a conversation.
Bottom line…..just do it!

EDIT: I removed your email address from public view. Have the person you are responding to (sorry I did not go thru the whole thread) click on your screen name to the left of your post, this will bring up your profile, including your email address.
If you post your email , then anyone can see it, including non members, scam artists, and bots, without being a member of or signing on to Healingwell.

Post Edited By Moderator (Pratoman) : 8/31/2023 4:07:54 PM (GMT-8)