AUS Saga-Chapter 3

Sorry that you have had so many medical and administrative complications with this. I can't offer any advice other than the hope that it resolves quickly and the device then works as intended.

It is the fear of complications or less than optimal AUS performance that has kept me using a clamp for 11 years after it was clear that continence wasn't coming back.

Good for you for striving to regain normalcy in that aspect of life.

Hey, MRJ,

A foley was inserted, and removed, then reinserted, then removed again, then reinserted. Taking it in and out to see if he could go on his own was making the issue worse. And, the surgeon didn't want the foley to stay in for any length of time, as a foley at the cuff site can cause erosion.

Donna

RandyJoe said...
Randy still can't pee on his own. The doctors seem to have no idea what caused this, but seem relatively calm and sure that it will eventually resolve itself. We, on the other hand, are worried. I can find lots of articles showing that urinary retention is a side effect of this surgery, but most of those deal with urinary retention after activation, not 11 days after surgery...

A Foley was inserted, and removed, then reinserted, then removed again, then reinserted. Taking it in and out to see if he could go on his own was making the issue worse. And, the surgeon didn't want the Foley to stay in for any length of time, as a Foley at the cuff site can cause erosion.

Donna - Believe me when I say that I understand what your husband is going thru. I had a similar experience, and the emotional trauma of the whole AUS experience still plagues me to no end. Generally I do not tell my story in open forums, as I don't want it to scare away anyone who may be considering having this surgery. Thousands of men have had this surgery, but somehow I drew the unlucky straw.

The urologist promised me a 45 minute procedure and I would be home that afternoon, no cath, and was scheduled first surgery in the morning. It didn't work out that way. I was at the hospital for 12 hours, and was eventually sent home with a Foley. The whole day was awful, one trauma after another, and I wish I could forget it.

As with Randy, the Foley was removed several times but I couldn't pee. The pressure was unbearable. They would "measure" my bladder with an ultrasound and wouldn't reinsert the Foley until it read 300ml or whatever... then the cath would go in and over a liter of urine would spray everywhere.

That happened three times. Eventually I was scoped and the urologist sent me for emergency surgery to replace the cuff. He too said he'd "never seen this happen before". I trusted the wrong doctor. Everything had to be postponed. I still leak but only need 1-2 pads daily.

I strain to urinate and have to pump the AUS several times during the flow. The surgeon appears unconcerned. I know I will need to find another urologist and I dread it so, as it seems that urology is what half of the flunkies from med school go into. It was my original urologist who watched my PSA steadily rise for four years without ever mentioning the word cancer.

In a way, I am "relieved" to hear that at last, I am not alone in having terrible luck with what should have been fairly straightforward procedures. I'm sorry that it is your husband who is experiencing this now. I wish there was something that I could offer other than commiseration. Some days we are fortunate, other days we are not. And some days we really get quapped upon.

Yours is a strange case as everything seemed okay for the first eleven days. That bulge sounds like something the surgeon should definitely be concerned about.

I had done considerable research into the AMS800 itself and chose one of two local doctors because he was younger and his practice closer to home, but he would not tell me how many such implants he had performed, though I asked him twice. It may have been just a series of unfortunate events, but the cuff was too small (though he swears it was sized properly). The replacement cuff is actually a bit too large, so I am still essentially incontinent... though I did go from 8-10 pads a day down to one or two.

When I was first unable to urinate, he did manipulate the pump (so soon after surgery was extremely painful) before inserting the first Foley. It was replaced three times over the next two weeks before he did the upsizing surgery, which was not without its own problems. And I also had the suprapubic cath for a week following the revision.

The older surgeon who said he had done about fifty AMS800 implants per year over the past 25 years did finally retire about a year later. If I had chosen him then I'd still be in the situation of finding yet another new urologist.

Last month I realized that I'd had six major surgeries in just the past three years, with sixteen total lifetime surgeries under general anesthesia, so I am not a stranger to surgery and customary practices as well as the occasional less than ideal outcome. Add a few biopsies under sedation and the number is more like 24. Considering how many thousands of men have had this implant surgery, I wonder why my experience was so much different from what most men experience. It still keeps me up at night. And is one of the main reasons why I must force myself to stay away from prostate forums.

I lucked out when I got the AIS installed. The surgery was done on an outpatient basis with a Foley inserted and instructions to remove it the following morning.

I experienced very minimal pain and only the slightest bit of swelling around the incisions..

After activation a month later, i leaked slightly, around a pad a day. about a month later, I only leaked if I stressed the bladder by drinking way too much coffee.

Two pumps is the norm for normal urination.

I hope your husband get this sorted successfully. The return to continence, even if artificial, was very welcome.