AUS Disappointment

Well, having been referred to a Urologist in Sydney specialising in Strictures and AUS's, I have come away horribly disappointed.

To say this guy doesn't sugarcoat comments is putting it mildly. His first comments to me were "boy you have worst situation possible, incontinence and strictures - couldn't be worse". Gee thanks buddy, that made me feel better. Why do surgeons have the worst bedside manner?

Then went on to tell me that it isn't sensible to put a cuff on a urethra when a stricture has been dilated, because it is very likely for the stricture to reoccur. If that happens there are real problems because you can't then relieve the stricture because of the cuff. He also said that if the stricture was close to the neck of the bladder, then an AUS would be impossible. He did then concede that if the stricture was not at the bladder neck and we could be sure that it was stable, and that would take at least 6 months, then it might be possible to reassess. So at that point I was faced with another 6 months of incontinence, which is unpleasant but has to be accepted.

I was also booked to have a cystoscopy with him the following day, so had that (under anaesthetic) and after that he advised that the stricture was not at the neck and he was confident that he could operate to stabilise it and subsequently install an AUS not until it had 12 months to heal adequately. So now looking at another 12 months of heavy leaking - from the time the stricture is fixed, which hasn't even been scheduled yet. He also said that if I didn't have the op to fix it, it was virtually guaranteed to reoccur

Jut to top off my weekend, I developed retention after the cystoscopy and had to be catheterised, stay overnight in hospital and then drive 300kms home with a very uncomfortable urethra/perineum. Now have to see my local urologist to have it removed and pray that the retention is over, otherwise I guess it's back in again and then who knows.

Went away leaking and have come back retentive! And with no immediate solution in sight.

Still as my wonderful wife says, at least we are cancer free - for now. Plenty of people worse off than me.

Be interested to hear of anyone who has had an AUS with strictures.

Chas

I was thinking maybe you could have a sling instead, but I suppose you are too wet for that. Sorry to hear of your complications.

I did not have a stricture but had a fistula develop from the urethra to the incision point below the scrotum after a botched AUS implant. It all had to be removed and we had to wait 6-8 months for everything to heal before we could do it again.

He put the cuff on a shorter urethra because I had my bladder removed and though I had a leak (where the urethra developed a fistula) it was a minor one, he was ok with it and no problems to this day.

We did have all of those conversations you are having. The maybe we can or maybe we can't.. We just had to wait and see if things worked out. I wore a condom cath or a Foley cath for 6 additional months while we let things heal.

So in review, the cuff went over an area where we had some issues, but he did not put a small cuff on, but a tade bit looser one. I leak some, but not great when I move around.

NEO

Cannot pee, may not need an AUS, perhaps so just for the short run. If the stricture restricts urination., but you still leak, a sling may be the next best option..

But you may need to wait a while to see what happens..

Hang in there..

NEO

Jeff,

You are spot on - give me leaking any day!! Never thought I would say that until I found I couldn't pee. The pain from bladder spasms is excruciating. The worst I ever had was over a year ago immediately post surgery. My catheter became dislodged during the night and completely blocked the urethra. My wife doesn't drive so we called a taxi at 3.30am to go to A&E. Dr on duty had trouble removing the catheter, but eventually managed with a lot of tugging on his part and screaming on mine.

Then had to wait till a urologist could be found to put in a new catheter in via cystoscope to ensure no damage to the stitches in the urethra. That didn't happen till about 9.00am by which time I had the max dose of morphine and was still in agony. They drained over a litre of urine. Worst pain of my 69 years.

In fact I wonder to what extent that episode caused the strictures which I now have, though my stricture expert Uro believes I have radiation strictures.

Am now hoping my Uro will agree to install an SPC.

Have talked to the Uro about clamps and condoms. He was very opposed to the clamp because it restricts blood flow in the penis. The way he explained it. blood flows into the penis in 2 directions, from the abdo area in to the penis and then from the tip back into the corpus. The abdo flow can already be compromised by the RRP surgery, so do not want to also compromise the flow back from the glans area.

He was also not keen on the condom, but not adamant. I want to get away from bags if possible and the trip/flo valve on a SPC looks like the best of a bad set of options. May be that if my urethra is left alone for a while it may return to full flow, but really don't know.

Thanks for the input

Chas

Horrible reading this thread. Cringeworthy.

I had severe BPH before my PC surgery.
I remember being unable to pee. Miserable. Flomax helped tremendously. I assume you tried that early on?????

A few times I had my coat on ready to race to the ER but then I had some success.

Mel

Chask:

The last thing you want is to have an AUS implanted and then have a stricture issue I can guarantee you that. I was tested for a urethral stricture but it turned out that I had a bladder neck constricture. They opened me up and when they did they told me that my spincture would be useless after the surgery because they had to open me so wide to make sure I could have an AUS implanted. (They didn't want the bladder neck to close again, this is different than a urethral stricture which will close)

It is correct that if you have a stricture and they dialate it and it closes again that the odds are 100 % that it will continue to close on you continually over time. I think you're going to have to suck it up and do the urethroplasty and then give it time to heal, the last thing you want is an AUS implanted and some crazy ass ER Doc trying to cath you with the cuff closed on the AUS. Most Doc's don't have a clue what an AUS is and when you explain it they think you're from Mars.

Do the smart thing, take the time to heal properly even though it seems like along way off, it should be worth it.

Good Luck
David

Chask,

I suggest you get a second opinion, Google Raji second opinion Sydney, this could be a good avenue for you. I am sure you can get a urodynamic test quicker than you indicated.
Hope all goes well