My AUS Nightmare

After suffering worsening incontinence for more than 4 years I decided with hesitation to have the AUS surgery. After reading so many favorable reviews I was excited about the prospect of being dry. But what happened to me is nothing short of an AUS nightmare.
I had the procedure June 8. It seemed to follow the typical procedure I had read about, until it was time to go home. I stayed overnight since a catheter was in place. When it was removed I could not urinate. Doctor believed it was a case of anesthesia needing to wear off. In any case another catheter was inserted and I was sent home. I was back at the Uro on Monday to have the catheter removed. Before removal Uro filled my bladder with saline solution and then removed the catheter. I was able to pee all of the saline solution out and in fact I urinated again before leaving and several blood clots came out. When I got home, it was back to being unable to urinate. It took heavy straining just to get a tablespoon out. I was getting constant bladder spasms and the only relief from the spasms was to attempt to pee, which was increasingly difficult. Uro believed the issue was swelling of the urethra and believed it would sort itself out in a couple of days. After a week of this misery I was back in the Uro’s office. He examined my bladder and found an enormous amount of retained urine. Once again a catheter was inserted to drain off the urine. I was told it would remain in place and that I needed to scheduled surgery immediately. It was believed the cuff size of the AUS was too small so a larger cuff would be put in. While waiting for surgery I had the absolute worst bladder spasms of my life. Far worse than any kidney stone I had had. The spasms were near constant. Contacted Uro and he prescribed an antispasmodic medication that provided a little relief but the spasms continued until the day of surgery. I was in surgery yesterday fully expecting to have a new cuff in place. Imagine my shock when I was told the whole device was removed. Uro said he found a portion of my urethra that was to the point of erosion due to lack of blood supply. He thought he might still be able to replace the cuff but noticed a small perforation in my urethra near the cuff. At the time I was taking a medication that turned my urine blue and he said the cuff was dyed blue and it was obvious there was leakage. He believed that a combination of radiation damage, use of catheters and the cuff pressing against the sphincter muscle was responsible for the tear. He had to put in another catheter to help my urethra heal over the next ten days. He also had to put in a drainage tube to drain any fluid that had leaked into my body cavity. Fortunately there have been few if any spasms so far. I go back in ten days and hopefully all will be healed and I will be sent home fully incontinent again without an AUS and several thousand dollars poorer. I can try for the AUS again in six months. I hate being incontinent but I just don’t know if I can go down that road again.

How awful for you. I'm so sorry you are having to go through all the surgeries and suffering. I hope one day goodwill be able to get something to help.
Beth

So sorry to hear about your experience, especially that you had to PAY for the AUS that you now don't have! I went through a similar experience about a month ago, but the cuff revision was successful... except now I have a problem in my groin that affects my left leg. It was okay after the first implant surgery.

I had those spasms while the Foley was in for two weeks in between and they gave me Vesacare. Fortunately my urethra was not perforated, just eroded. I too was hoping mine would go easy, as it seems everyone else had it. In my case, my SRT is waiting for this to get fixed.

I wore diapers for five weeks following the implant surgery but now I'm back to using condom caths and leg bag. We are traveling for the holiday and was originally supposed to be activated in time, but now no.

I hope things go better for you in six months. I'm sure you must be very discouraged. At least for me it's sort of reassuring to know that I'm not the only one with a bad experience.

Geez, that is rough.

This is an update to My AUS Nightmare. The surprises just keep coming. I had a doctor's appointment today (June 30) to remove the catheter, which has been in place for more than a week. The spasms which were so much a part of my life a week or two ago finally subsided and the past week has been pretty uneventful. Doctor removed the catheter and said he wanted to see me in a week and scope the urethra to make sure it is healing properly. Uro told me he has done more than 200 of these AUS procedures and has never had a case like mine. He now believes the AUS pump was defective and sent it back to the manufacturer for forensic testing. I didn't mention it in my other post, but on at least three occasions while in the hospital and/or doctor's office, my Uro checked the device to make sure it was operating properly. Apparently the device had been activating itself and ended up closing the cuff. So, I told my doctor I want a copy of whatever report he gets back from the manufacturer so I can weigh my options and possibly take legal action against the manufacturer of the device. Luckily so far no infection has showed up and hopefully I can begin the road to healing. I don't think I can make myself try the AUS again, so it looks like total incontinence will be my way of life.

What a terrible story. You've really been through the ringer. It is sad you'd welcome a return to full incontinence rather than put up with the AUS.

I sure hope there is some advance that will allow you some relief in the future.