Does Anyone Have Suggestions Regarding AUS surgery?

[E2-Guy]

My incontinence is starting to get the best of me and I'm seriously considering flying back to The US for AUS surgery since Medicare pays for nothing outside of the country. I have friends that I can stay with in Chicago (my first choice since that is where my family is), Phoenix, San Jose, and LA. Any suggestions would be appreciated. Will Medicare pay for it, how long is the hospital stay, what would the cost be, and who would be the best doctor? I understand that the surgery has about an 85% success rate.

[CAMPSOUPS]

I have no input on that Ron but sorry to hear the king of incontinence hacks has come to this consideration. The pain in the ass situation must be accumulating mentally.If you end up in Chicago I'm going to wish I still lived there lol.

[E2-Guy in reply to CAMPSOUPS]

Thanks for your reply Bro! I just spend too much time on the toilet, and when I'm out I hate using public restrooms. Disabled restrooms are in a minority here and I really prefer having a sink at my private disposal. Perhaps I may decide to use a hospital in your vicinity which would enable us to hang out!

[CAMPSOUPS in reply to E2-Guy]

Well thanks. Like I was saying though I moved to the twin cities left Chicago coming up on 2 years now.

[E2-Guy in reply to CAMPSOUPS]

If I went to the twin cities it would have to be in the summer, otherwise I would die!

[CAMPSOUPS in reply to E2-Guy]

Tell me about it. A measly 300 miles to the north makes a lot of difference in winter onslaught.

[CAMPSOUPS in reply to E2-Guy]

I know what you mean. Between my days as a hospital corpsman experience and my wife being japanese in our case we have a bit of OCD regarding public restrooms ourselves lol.

[CAMPSOUPS in reply to CAMPSOUPS]

Hopefully you'll get some response here on the crux of your post--AUS.

[Moespy]

Next Tuesday I go in for the 2nd time to have a kidney stone removed that is stuck in my ureter. Last time the scope broke through the stricture that I had and left me badly incontinent for 6 months. I have gradually built back scar tissue and again I am now only slightly incontinent (1 max underwear per day). I am prepared to be badly incontinent again after Tuesday's surgery and of course dread it. I met with my RadOnc last time and he told me that the satisfaction percentage of AUS is low and I should do everything I can before going down that road. Because I have followed your posts I will assume that you have tried everything up to this point with no satisfaction? The price paid for living with PCa is high. I am 2 years out from ADT (Lupron) and still have total erectile dysfunction, little interest in matters sexual and of course the wondaful experience of incontinence. It could always be worse but on the other side of the coin...I wish you the best and will continue to follow your journey.

[E2-Guy in reply to Moespy]

Bro,

Thank you for responding to my inquiry. I'm sorry to hear about what you are going through and hope your surgery brings you some relief. My pathetic little guppy hasn't worked for years and the leaking is probably the worst part of it!

Now I'm worried about the AUS surgery after what your RO told you? I may just have to try some of my previous Rube Goldberg contraptions again to see if they are any better than the paper towels and plastic bag.

[erjlg3]

I hope everything works out wonderfully for you Ron Ron!!🌻Jackie

[Jac_J]

Do you have medicare or some kind of private cover for Australia? Australia has a really good medical system and way cheaper then U.S . If you can get your costs covered or have s budget I can do some leg work for you around the Sydney region.

[E2-Guy in reply to Jac_J]

Thank you Jan-j-sp for your reply. I have no insurance other than American Medicare. I did go down to Melbourne a few years ago for the Ga-68-PSMA PET/CT scan which was $600 as opposed to $2700 in the US. That plus the flight to AU was 1/2 the cost of a US flight.

[Jac_J in reply to E2-Guy]

PSMA-PET. Is around $700 now. Supply chain issues haha. If you ever need anything Bro….

[ehoneycutt29]

HelloI had my AUS surgery over a year ago. I love it! The most I have is a little dribble and is usually because the cuff has not closed off when I put my junk back in my underwear. So I do wear a light thin pad mainly just for that reason. I had mine placed by Dr. Neils Johnsen at Vanderbilt medical center. I highly recommend having it done. If I am not mistaken I only spent one night in the hospital and that was because I live 2 hours away. You will not regret having in done. Just choose a competent surgeon like Dr. Johnsen that has done a ton of them. Good luck!

Eddie

[E2-Guy in reply to ehoneycutt29]

Thank you Eddie for your reply and for the recommendation. I don't know anyone in Nashville, but spending one or two days there wouldn't be a problem.

[ehoneycutt29 in reply to E2-Guy]

Hello, I am telling you Dr. Johnsen is the best. I was having to wear depends all the time and stayed soaking wet. He is with Vanderbilt Urology. Even if you can't or don't use him, just make double sure whoever does it has installed a lot of them. The big issue is getting the cuff around the urethra sized and placed correctly. Good luck my friend!

Eddie

[London441]

Never believe a RO or anyone else who tells you the ‘satisfaction percentage’ of any procedure is low without asking him for data to back it up.

This kind of thing is akin to being told how long you have to live at diagnosis, or not to play sports with a hip replacement. It’s BS.

There is abundant data on the efficacy of the AUS.

Excerpt from a Canadian study:

“The AUS has the largest body of literature reporting long-term success. This long-term success rate and high level of patient satisfaction outweigh the need for periodic revisions in some patients. Overall, the AUS remains the reference standard to which all other treatments must be compared.”

Yes, it sometimes needs a revision after 7-10 years, but definitely not always.

I have one and couldn’t be happier with it. It’s very easy to use, and although not 100% perfect, it is very close.

Anyone who hasn’t experienced long term heavy incontinence knows nothing about how miserable it is. The thought of having to get it replaced in 10 years or whatever is nothing to me. 10 years lol. I have prostate cancer, for God’s sake! It’s been a tremendous gift for me. .

[E2-Guy]

London, I appreciate your response and the detailed information that you have supplied. I am now more convinced that it is a procedure that I should definitely consider. I have been able to live with his inconvenience for years now; however, as of late it is getting worse. I probably spend at least 3 hours/day on the toilet.

[Yank66]

Life changing surgery for DH. He spent one night in the hospital eight years ago when he had it installed. Medicare paid for it and we had a small deductible. He went from 100% incontinent to a small pad daily. He probably needs a revision because he is leaking more now. Be prepared to educate your medical professionals-many are not familiar with it. It was a huge confidence booster.

[E2-Guy in reply to Yank66]

Thank you Yank for your detailed reply and the additional vote of confidence. I have to fly back to the states to have it done since I have no insurance in Thailand. My problem continues to get worse with age and I'm to the point of trying anything. I've come up with various contraptions which do help; however, using some of them in public toilets can be quite difficult especially in facilities that do not have handicap access restrooms.

[jhartdo]

I had my surgery for incontinence approximately three months ago. The first few days, my wife had to help me get my legs into the bed. The first three weeks sucked. I am now at three months, and love it. My family doctor had his surgery done about five years ago and he said it was the best surgery he ever had. After getting through the recovery, I agree

[E2-Guy in reply to jhartdo]

Thank you Bro for the reply and for sharing your recovery experience. Sounds a bit scary, but obviously the end result was worth the discomfort.

[Dlanghorne]

I was incontinent for 3 years after robotic Prostatectomy, I used 5-6 pads per day. Finally was able to get artificial sphincter in Dec 2021. Some weeks of recovery but today everything is great. Still wear 1 small pad per 24 hours. Best underwear are the Wearever brand boxers on Amazon with a small separate pad attached. Mind was covered by Medicare plus United Health AARP supplemental insurance. If the incontinence is bad I definitely recommend the AS. Best wishes!

[E2-Guy in reply to Dlanghorne]

Thank you Bro for the recommendation. I'm kinda surprised that the recovery time for some is more than what I originally thought. Happy to hear that everything turned out "great"! Thanks for your "Best Wishes".

Ron

[Istomin]

I had an AUS done at Memorial Sloan Kettering in NYC by Dr. Jaspreet Sandhu a year ago and it was/is a life changer. I had serious incontinence ever since a RP 4 yrs ago (7-8 big Tena pads a day, and I even had to sleep with them) and delayed getting the implant b/c of Covid. I also chose to go to NYC for Dr. Sandhu rather than have it done at a very good local hospital (2 hrs from NYC and close to where I live) b/c I wanted an AUS specialist rather than just a competent surgeon who also does various other kinds of urological procedures. The soreness after surgery is annoying for a while but it's minor in light of the benefits when the device is activated. I'm 75 and have a very good Medicare Advantage insurance plan, so the cost to me was zero. One other thought--since MSK is a couple of hours away from where I live, I opted to spend 2 extra days in a hospital hotel near MSK after surgery, just in case there was some sort of complication (didn't want to have to rush back). Fortunately, there wasn't any. I've read that the satisfaction rate for the AUS is over 90%. I now occasionally use the lightest Tena pad if I do a strenuous routine at the gym or plan to be on the road for any length of time (like 2 weeks in Europe earlier this summer). This takes care of any small driblets and one pad easily lasts all day w/out getting really wet. Good luck to you!

[E2-Guy in reply to Istomin]

Thank you Bro for the informative reply! Going to MSK would not be the most convenient for me; however, it is probably one of the best hospitals in America. If I do decide on the surgery I will definitely put Dr. Sandhu on the top of my list.

Thank you again for the info...my best to you in this battle,

Ron

[Metaldraft]

Wishing you the best ron I’m sure you will collect enough data to pursue your eventual directionSpeedy recovery brother warrior

[E2-Guy in reply to Metaldraft]

Thank you Bro so much for your kind reply!