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AUS update

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Posted 6/14/2017 2:10 AM (GMT 0)
My AUS is a godsend. I decided to keep wearing a light pad. There are two very minor leak scenarios: 1) Waiting for the cuff to close after urination. I sometimes don't want to take the time. It is around 2 minutes. 2) Sitting on a hard surface, like a bar stool, can depressurize the cuff a bit. I try to sit off to one side or another in those cases. Even with all that, I don't come close to wearing out a light pad in a day.

I have been able to reincorporate a specific, intimate act into my repertoire, as long as I am laying down and don't have gravity working against me. smile

I am back to exercising without hesitation.

On the colon cancer front: My CEA is low and stable. Neuropathy is improved. I can button my shirts. My feet still hurt but are better. I estimate another year to resolve. My next CT scan (looking for liver or lung mets) is in August. Fingers crossed but confident things are good.

Life is good!
SC
Posted 6/14/2017 2:19 AM (GMT 0)
Great report!

Here's hoping it keeps getting better,
Andrew
Posted 6/14/2017 4:06 AM (GMT 0)
SC: It's great to hear the AUS is working great.

Good luck
David
Posted 6/14/2017 5:04 AM (GMT 0)
Happy to hear your good news. I had my AUS implanted June 8, so I can't wait to get where you are now. My surgery went well but I have had some complications since. After an overnight hospital stay I had the catheter removed only to find I couldn't urinate. Uro thought it was due to anesthesia. Had to have catheter reinserted (ouch). It was removed Monday but still having difficulties peeing. Uro now believes it is due to swelling caused by the catheter and possibly blood clots, also caused by catheter. Passed a couple of blood clots and Uro checked to make sure AUS wasn't accidentally activated. Starting to see some improvement and hope the worst is behind me. If not Uro says he may have to put in a larger cuff. After your posts and all the others who have talked about success I hope I am weeks away from finally realizing what it means to be dry again after four years of worsening incontinence.
Posted 6/14/2017 5:06 AM (GMT 0)
Everything will be fine with your willpower and positive attitude, see you around the forum Southern Comfort. smile
Posted 6/14/2017 4:12 PM (GMT 0)

tdnjam said...
I had my AUS implanted June 8, so I can't wait to get where you are now. My surgery went well but I have had some complications since.

My AUS was implanted a month ago, and I also had some complications. These are detailed in a couple of other posts here on HW as well as in chapter four of my blog at www.cancercoupleblog.com or by clicking the little house icon at the left of this post under my name.

Following the initial implant I couldn't urinate and had a Foley cath for two weeks, then after a cystoscopy I was admitted for emergency surgery to revise the AUS up to the next larger cuff, as you had mentioned. Now I have additional discomforts which were initially dismissed as due to swelling, but I intend to present to the surgeon again tomorrow.

The two posts here detailing my ordeal are "AUS saga continues" at www.healingwell.com/community/default.aspx?f=35&m=3855557 and Banff's stricture thread here: www.healingwell.com/community/default.aspx?f=35&m=3864261&g=3864855#m3864855

If these issues cannot be resolved I intend to ask my Uro to remove the device as soon as I have completed SRT. I was able to deal with total incontinence and did so for many months, but I do not know how to cope with the complications that came with the AUS surgery and primarily from its revision. Perhaps my appt tomorrow will open another doorway, but its not looking good so far.
.
Posted 6/14/2017 9:46 PM (GMT 0)
RobLee you are one of the few I have read as having issues with their AUS. Sorry to hear it. I will admit I was reluctant to have the surgery just because the whole idea sounded so freakish. It still does knowing how this thing operates and being able to feel it inside my body. But the incontinence for more than four years which has gotten progressively worse to the point of using up to 8 pads a day and have accidents where I completely soaked my pants left me looking for solutions. And the AUS is pretty much my last best hope. I am still not 100 percent but I keep hoping. I was wondering in your case if having SRT may be contributing to your issues. Radiation caused me all sorts of issues during and after...in fact it is primarily the reason I am in this situation today. I am grateful SRT has got me to the point of remission but the additional gift I received is a pain in the you know where.
Posted 6/14/2017 10:17 PM (GMT 0)

tdnjam said...
RobLee ... I was wondering in your case if having SRT may be contributing to your issues.
Radiation caused me all sorts of issues during and after...

Thanks for the reply. I have not yet had any radiation. The whole reason for getting the AUS in the first place was so that I could begin SRT. I have been essentially incontinent since my RRP last summer, and have used condom catheters and a leg bag ever since. I was scheduled to begin SRT last March, which is now three months ago, however my RO said I need to be continent enough to hold a full bladder before I can begin SRT.

My Uro said it is better to have the AUS put in before SRT rather than after. So at this point, my SRT is being held up until the AUS heals. The AUS was necessary in order to start SRT. So the AUS had to be first, and the SRT second. If I end up being more continent, so much the better. But the main reason for getting the AUS was so that I could get the SRT while my cancer is still confined to the prostate bed.

Something happened during the revision surgery two weeks ago. Sitting has been painful ever since. It was not that way after the initial implant surgery. I am hoping tomorrow the surgeon can give me a clue what's going on.
Posted 6/15/2017 10:23 AM (GMT 0)
I understand now. In any case, good luck with the SRT and hope everything works out with the AUS. My journey with AUS sounds so similar to yours. Still not 100 percent yet. One area that concerns me, which was dismissed by my Uro, is the numb feeling in my groin area. It is especially pronounced after I urinate (or strain to urinate). The scrotum and penis are numb for a short period. Uro chalks it up to trauma from the surgery. But after a week I wouldn't think there would be any numbness. In any case, I will be seeing Uro again in a couple of weeks, unless there are serious complications, and see where I go next.
Posted 6/15/2017 12:18 PM (GMT 0)
Thanks for the update. I had my AUS implanted on 5/5 and am scheduled to activate it next Tuesday, 6/20.

I feel very blessed and fortunate because I've had no problems whatsoever. The stitches have dissolved, the numbness in the groin area has gone, and I've been back at the gym going 75% for 2 weeks.

I just hope post-activation goes as well.

Tony
Posted 6/15/2017 10:03 PM (GMT 0)
Tony, good luck and glad you had no complications. Thanks for mentioning the numbness as it had me worried. Surgery was a week ago and the groin area is still numb.
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