HealingWell
Search Close Search
☰

Artficial Urinary Sphincter installed Friday 4/11 Activated, now dry!!!!

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 2 3 4 56 7 8 9
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/29/2014 8:14 PM (GMT 0)
Home from the hospital this afternoon. The procedure went well and DH is feeling pretty well considering. He's a little more sore after the ride home, but he's relatively comfortable sitting in his recliner and catching up on all the shows he recorded. He should be able to drive by Friday and has fewer restrictions than we expected--shower tomorrow, no heavy lifting (over 15 lbs), swimming, biking. He's on Cipro for a week. If he continues to do well, the doc said he could go bowling next week!
We're both looking forward to a good night's sleep tonight! The doctor is convinced this will solve the incontinence problem. He gave us a sample of the part of the device implanted in the scrotum so we could see what it looked like. Six weeks to go!
You guys who had this done helped to set our minds at ease. Thanks!
Beth
Posted 4/29/2014 8:47 PM (GMT 0)
Congrats Beth, thanks for the update. I have been anxious to hear how he did. It all sounds familiar. Send my best to your DH.
Hopefully in a few weeks we will both be in the "Leak no more" club.

Regards,

Bill from Florida cool
Posted 4/30/2014 6:27 PM (GMT 0)

DYank said...
Home from the hospital this afternoon. The procedure went well and DH is feeling pretty well considering. He's a little more sore after the ride home, but he's relatively comfortable sitting in his recliner and catching up on all the shows he recorded. He should be able to drive by Friday and has fewer restrictions than we expected--shower tomorrow, no heavy lifting (over 15 lbs), swimming, biking. He's on Cipro for a week. If he continues to do well, the doc said he could go bowling next week!
We're both looking forward to a good night's sleep tonight! The doctor is convinced this will solve the incontinence problem. He gave us a sample of the part of the device implanted in the scrotum so we could see what it looked like. Six weeks to go!
You guys who had this done helped to set our minds at ease. Thanks!
Beth

DYank,
Is the doctor joking when he told you guys that your hubby can go bowling next week? I also bowl a lot and play table tennis 3x a week prior to my AUS installation 7 weeks ago and until now I am having some pain in the upper incision (below the navel) when I bend down. Bowling takes a lot of bending when you throw the ball. Good luck and wishing your hubby a fast recovery.
Jhuno
Posted 4/30/2014 8:15 PM (GMT 0)
Jhuno,
No joke... the doctor says if the tenderness is gone and he feels like it, he can bowl next week. (DH bowls in two leagues.) I questioned this because of my concern that he might overdo it and have a set back, but the dr. was positive that it would be all right. I was concerned about the weight of the bowling ball. He is able to bend over and pick things up with just mild discomfort. Sitting isn't bad, so we just went for a short ride to observe the local flooding--I drove. He is more sore than yesterday so perhaps reality just hasn't set in. All in all, he's doing better than either one of us hoped for. I'll keep you posted on the bowling...
Beth
Posted 4/30/2014 8:55 PM (GMT 0)
So, Jhuno, How's the AUS working. You must have had it activated about a week ago. Are you still using a pad.
Posted 5/1/2014 3:39 PM (GMT 0)
Bill, what about your progress? You must be close to two weeks in now. I haven't seen any recent mention of discomfort; so maybe things are beginning to settle down for you pain-wise? If so, the glide into activation ought to be smooth, except for the leaking.

Mike
Posted 5/1/2014 4:48 PM (GMT 0)

knotreel said...
So, Jhuno, How's the AUS working. You must have had it activated about a week ago. Are you still using a pad.

"knotree",

So far, the AUS is working very well and I have been 100% dry since the activation two weeks ago. Using a pad is history now and I hope it stays that way.
Posted 5/1/2014 7:02 PM (GMT 0)
Hi Mike,
It will be 3 weeks tomorrow with 3 more weeks until activation. Count down has begun!

Pain has settled down to manageable. It still hurts some in my stomach when I bend. I figured out how to get in and out of my SUV without hurting myself. I sit on the u shaped kneck pillow in my car and elsewhere. The lower incision hurts when I am sitting so I am careful when I sit down. Again the u shaped neck pillow works the best to allow the lower incision to "float" in mid-air so I am not sitting directly on the incision. I tried a donut pillow but it wasn't comfortable at all, not enough room in the center.

I seemed to get more tired in the late afternoon and in the evening. I had plans to see the Doobie Bothers Friday night in downtown W Palm Beach but they come on stage at 9:00 and that is about the time I feel exhausted. I guess I'll have to see them another time. I need to stay home with Wille and the Po' boys.

I have a follow up doctor's appointment first thing in the morning. I will post what they say at that time.

How are you doing? I remember you had an appointment with your doctor 1-2 weeks ago. Have you discussed a sling or AUS with your doctor?

Jhuno sounds like he is doing great with his new toy. I hope I can follow his lead. His recovery sounds a lot like mine, continued pain in both incisions and when he bends. I don't know how Beth's DH is going to bowl a week after installation! I was told no lifting over 10 lbs. but his doctor is saying 15 lbs., about the weight of a bowling ball. yeah

I couldn't do it! Too much bending at the waist area. I wish him good luck if he does it. I have been leaking for 21 months. My life is on hold for 3 more weeks until this chapter is over. It is too close to screw it up now.

Thanks to everyone for following along these weeks. I'll keep it going until activation time so I can complete the story.

Bill from Florida cool
Posted 5/1/2014 10:00 PM (GMT 0)
Bill, your progress sounds good - didn't realize it was already almost 3 weeks since you had your AUS implanted. The continuing pain from the incisions must be par for the course for this kind of surgery, as well as the exhaustion. I was surprised after my Da Vinci surgery that I had no pain at all but it did involve a slightly different area of the anatomy. I think that cutting anywhere near the frank and beans is going to result in a high degree of pain. But the end result - dryness - is definitely worth it. Bet you can't wait for that thing to be activated!

I did see my urologist about a week ago. He did a cystoscopic examination of my bladder and tested how well it and the bladder sphincter were working. He told me that there were no strictures, no scarring, no problems and both were working as they are supposed to. If so, then obviously, the cause of my leaking is somewhere else down the line, maybe the membranous urethra or the bulbar urethra need some more support now that I no longer have a prostate.

Anyway, he offered me the option of either an AUS or a sling, since I'm moderately incontinent. He spent quite a bit of time with me to explain the two procedures. Then he asked me to spend some time educating myself on the two approaches before I reach a decision. So, that's what I'm doing now. He told me that, after I've made my choice, to let him know and he'll do the surgery a month later. So that's where I stand: gathering information and preparing for a decision.

Mike
Posted 5/1/2014 11:07 PM (GMT 0)
Good for you Mike!
If you are just dribbling, the sling should be just find. I could hardly get by a day with less than 3 pads. Less than 2 months ago, I had an 8 pad day.
I hadn't had a day that bad since the DaVinci. That was when I decided to do something about it once and for all. As I said before, I was considering the sling and that is what I went to the doctor to discuss with him. He sold me on the AUS by saying it is the gold standard to solving incontience problems. Being a surgery guy with my PCa, I like hearing the "gold standard" phrase. No offense to the "rad guys".

He said it would take him the same length of time in surgery (but probably a bigger pay check) as installing a sling with a much higher rate of success than a sling. I read several books and articles that seem to agree with him.

But I have to say, I wasn't too excited about having to push a button to pee for the rest of my life. And now I wear a medic alert dog tag to make medical personnel aware, in an emergency, not to give me a catheter because I have an AUS.

There are a lot of guys on the forum that have slings and AUS's so you might start a thread asking for advice. Worried Guy knows a lot about slings and is always willing to help.

I hope whatever you choose does the job for you and I appreciate your concern for me and my recovery.

Bill from Florida cool
Posted 5/2/2014 1:15 AM (GMT 0)
Hello Big Mac,

Glad that you are feeling better and thank you for your postings.

Take care.

 

Posted 5/2/2014 3:13 PM (GMT 0)
I just got a copy of the hospital charges from my insurance company in the mail today. The amount charged price was about $50,000 but what the insurance company actually paid was about $11,000 plus my deductible. Quite a difference!

Went to the doctor today for a 3 week follow up.
Incisions look good, no infection. He said they are glued pretty heavily and the glue would fall off eventually. Next visit will be the last week of May and I will get the AUS activated at that time. He showed me where it was located in the scrotum. He said it usually settles in one location and stays there. I guess I had visions of having to look for it every time
I needed to pee. Not a pretty picture. Can you imagine having to ask someone in a public restroom to help you find you AUS button, "I can't find it and I really have to go, would you help me please?"

Well, here I go again, waiting! That is how life is when you've got PCa. Wait for your next PSA, wait for results, etc. now 3 more weeks of waiting for activation. Hey, I have been waiting 21 months to get dry, now I am only down to 3 weeks. I can do that, piece of cake!!!

Hi Titlewave, thanks for the nice comment and checking in on me. The end is very near now.

Bill from Florida cool
Posted 5/2/2014 6:17 PM (GMT 0)
Bill, thank you for your good wishes regarding my decision and outcome! We are suffering the same side effect from our battle with prostate cancer and we both want to get the same place.

Right now, using a penis clamp, I wear only one pad per day. But, before the clamp (the only true measure of incontinence), I was mostly a 3-pad per day guy and the occasional bad day would be 4 pads. So, I'm right at the edge of what would be considered a viable candidate for a sling. I don't know that I ever had to use 8 pads in one day, except maybe in the first few weeks following my Da Vinci surgery when I wasn't keeping count. That would have sent me to the urologist too!

My urologist also called the AUS the "gold standard" in my meeting with him. That kind of makes you wonder why anyone would choose anything else. But studies I've read recently on the AUS vs. sling question state that most men would choose a solution that didn't require implementation of a mechanical device. So, I'm with you on that score. I may be able to find and push a button now but will I be able to do that if I make it into my 90s? turn

But men do choose the sling over the AUS and I should find out why they do. So, I'll follow your advice and post the question here on the forum and let both AUS and sling guys weigh in with their thoughts.

Best of luck to you the rest of the way to activation (and afterwards)!

Mike

PS: almost split my gut laughing at the image of stopping a guy in the men's room to ask for help on finding the button!
Posted 5/2/2014 9:23 PM (GMT 0)
I my case I didn't have a choice, doc says I wasn't a candidate for a sling. But, like you I wonder why so many people get the sling rather than the AUS. Comparing the two, the are pretty much what and what on the issues of surgery and pain. The recovery may be a little easier with the AUS in that you probably can do more while recovering from the AUS. The biggest issue of all however is the results , so why not the gold standard? Possibly after taking a look online at the device maybe the AUS is a bit scary?
Before my RRP I was looking into the possible side effects and eventually Google lead me to a picture of the AUS, I said to my self, OMG,! that would not be cool. So maybe that's the answer, it's the OMG factor? Sling is just a piece of mesh, no pump, tubes, reservoir and urethral cuff. Now that I have had all that for several years it isn't nearly so bad as my first impression. Picture this, you need to pee and you give the pump one squeeze and you can pee about 10' straight out and be done in a few seconds.
That puts all the other stuff in perspective for me. Ask Worried Guy how long it takes him to pee? but then he is probably doing other stuff while he is peeing and this isn't bad thing for him. Peeing is one of the things I like best about being a man, and surely you heard about the proverbial "pissing contest", well with a sling you will never win one! I like my AUS!
Posted 5/2/2014 10:21 PM (GMT 0)
Knotreel, I think you hit the nail on the head regarding why some men choose the sling over the AUS: the idea of a mechanical device surgically placed inside them just freaks them out. Well, me too. Like most men, I've had enough experience with cars, appliances, etc., to know that mechanical things eventually wear out. So, if you give a guy a choice between the simple, no-moving-parts device and the complicated, moving-parts device, his instinct is to choose the simpler device. I think they do that even knowing the success rate is better with the AUS than the sling. It seems like a simple decision but it turns out to be more complicated than that for a lot of men. Just my humble opinion.

Mike
Posted 5/2/2014 11:02 PM (GMT 0)
Bill,
$50,000 ---I guess it is the gold standard! And that probably doesn't include the dr. bill. We're lucky to have excellent insurance, so we never questioned the cost. DH felt better Tuesday when he came home from the hospital than he has since. His soreness isn't as bad as he expected, but he had blood in his urine yesterday as well as burning and a progressively weaker stream. Went in for a urinalysis today and switched the antibiotic. Hoping that will take care of things! If not, he'll have to have a cystoscope.
Just so you know--he hasn't been talking about bowling next week any more. He sometimes pushes himself, but neither one of us want this messed up.

Jhuno,
It is encouraging to see your 100% dry statement. That's what we want again.
Beth
Posted 5/3/2014 12:37 AM (GMT 0)
Beth,
That $50,000 was the "suggested retail price" (I have been in retail all my life). The final price was about $15,000 including my co-pay and deductible. The doctor's charge was listed, around $1,300. He did several that day so I don't feel too bad for him. Amazing how the insurance companies can negotiate the price down so much. The $50,000 would have been what you would pay if you didn't have insurance.
As far as your DH's weaker stream, he probably is just going through some swelling. I had a lot that the first week. Tell him to just get a subistitute bowler to fill in for his team.

I agree that inserting a small pump inside your body is a little scary a long with having to squeeze to pee.

I commented to the doctor today about how different it will be from now on and if I would be able to find the pump every time. He asked me if I had any children? I said yes, 2. He said if you could raise 2 children, you can work an AUS.

Worried Guy will tell you his routine when he pees. It sounds like it does take some time.

Bill from Florida cool
Posted 5/3/2014 11:28 AM (GMT 0)
Beothal et al
My ears just started buzzing and I got a tingle 'twixt my thighs. Did someone mention incontinence?

I picked a sling over AUS for a number of reasons:
1) It is no extra plumbing and grows into your tissues so you both become one.
2) I had some control and my leak rate was less than 200ml per day (Pad number is too vague. Weigh your pads so you have real data.)
3) I can pee somewhat normally with no fiddling.
4) If the sling surgery fails it is simple to snip the sling and go on to the next treatment or method. AUS?

It has been 3 years since I had the sling installed. What don't I like about it? It takes me a full 1 1/2 minutes to pee. about 15 seconds to start, a full minute to go, and about 15 seconds to empty out (push my perineum) so I don't get a few drops on my underwear.
That does not sound like a long time, but it is. I do it while in the shower. And I like to pee in a cup - don't get me started.

I find that if I have a full bladder (more than 400 ml) I will dribble a little. Since I produce the average 70 ml/per hour I am good for 5 -6 hours - just like I was in the old days.

I cannot push the pee ice half-way up the urinal wall nor mark a tree at 5 paces. However. I can write my name, address and phone number (with area code) in the snow - an equally impressive feat.

Oh almost forgot. Sling surgery recovery is slower than AUS or even the prostatectomy. You need to wait 6 weeks to let it grow in. You sure as heck won't be bowling.

Take data. Measure twice, cut once.
Jeff
Posted 5/3/2014 5:27 PM (GMT 0)
Thank you, Jeff, for your input! I do take data (started 11 months after my surgery) and - at about 425ml of leakage per day - it shows I'm right on the cuff of getting any benefit from a sling. Just enough to give me a choice (diabolical, no?). From my reading, a sling might get me 100-200ml of improvement, which would mean I'd still be leaking a lot even with a sling - just not as much as I do now.

I understand how an AUS works: a cuff just squeezes the urethra shut. It's sort of like a penis clamp but further upstream and inside. But I'm not as clear on what sling does other than to provide some support to the urethra that the bladder sphincter needs to work better. Apparently the reason our docs want us to do Kegels is to strengthen the pelvic floor to provide that support to the urethra. I've developed a strong pelvic floor (thanks to almost a year of rehab) but it reduced my leaking only slightly. So, there's some other mysterious thing I'm missing that I need to get my urinary system working correctly again. It doesn't seem to be urethra support (or my urethra is still not getting enough support).

I notice that you had a large prostate - more than 2x the size of a normal prostate. I did too - almost 80 grams. I've often wondered if there is a correlation between the size of the prostate removed and the degree of incontinence. Yanking out a prostate of that size could leave a hole and maybe the bladder sags into the gap? Certainly women suffer from prolapsed bladders and need surgery to fix it but I've never heard of that happening in men. I've found no studies that ever looked at the possibility of a prostate size/incontinence connection following prostatectomies; so I guess it's all in the feverish imagination of a guy looking for solutions to his incontinence.

Anyway, I'm still gathering info to make a decision and hope to have one or the other devices put in me sometime in June.

Mike
Posted 5/3/2014 8:25 PM (GMT 0)
At 70, you don't have that much time to fool around trying things. Don't discount the big issue, leakage, all that stuff about tubes, pumps might be just that, stuff. Being that you leak that much and are just barely in your surgeon's range for a sling, If it were me I would go for the surest thing, ....AUS. You can query others on this, but I think that you will find that we AUS guys don't even notice the "unnatural" parts. I know I don't. Mine is not 100% but close enough where I don't worry about incontinence. I have no real data but a heavy leakage day for me is about one shield (not pad) about 1/2 wet, more usually, a spot about the size of a quarter.
Posted 5/3/2014 8:44 PM (GMT 0)
Mike,
Data is good. And I hope you are plotting it.
AMS, the makers of the AdVance sling recommend it for guys with leakage below 250 ml per day. You can go to their site and see what it does. If you are looking to lose a little weight by skipping a meal, check out the installation video. It is not for the faint of heart. It's so graphic maggots will gag and leeches will get tiny hard-ons.

I wondered about the relationship between big prostates and side effects too. I never bothered to research it. If I had to bet I'd say somebody has.

Maybe NIH will fund a research project. :-)
Jeff
Posted 5/3/2014 9:33 PM (GMT 0)
I have to admit -- this thread gives new meaning to "pushing one's buttons."

Billy Mac -- we leave on the 15th. Wil fly into Ft. Lauderdale and then drive to WPB, your old haunting grounds?

Mel

Posted 5/3/2014 10:41 PM (GMT 0)
Knotreel, I agree with you on not fooling around and trying out different things. Whatever decision I make, I want it to be as successful as possible. So, I'm going to take my time and try to make the right choice. I suppose that, even with the AUS, a guy gets no guarantees about being completely dry, huh? A little leaking is still possible then.

That's not a big surprise for me as my pee and me have had a strained relationship for a long time. I suffered BPH for 10 years before my cancer diagnosis and could not pee at all without a heavy dose of terazosin every night. So, I've gone all the way from not being able to pee when I wanted ... to not being able to stop my pee when I wanted - no happy medium for me! Well, that's not quite true because I can stop it when I Kegel but that's hard to do continuously when I'm active. The key point is that my flow regulator isn't in the "closed" position by default the way it used to be.

In any event, I'm very glad that you found a solution that gets you where you want to be. The best place to be is within 5% of where we wanted to be. I think I'll be satisfied with that too ... if I can achieve it.

Mike
Posted 5/3/2014 10:53 PM (GMT 0)
Hey Mel,
WPB is where I work now. I live in Boynton Beach south of WPB about 12 miles. I will be at my grandson's high school graduation 5/17 but if you would like to hook up for a cup of coffee or something, we could meet somewhere for a little GFMPH. Being on vacation, I am sure you have lots of plans but if you would like to meet, let me know.

You will really enjoy Charleston, I am heading there for a week myself 5/31. Spoletto is just going to be starting up about the time you get there.

Have fun anyway!

Bill from Florida cool
Posted 5/3/2014 10:55 PM (GMT 0)
Jeff, I've got a year-and-a-half of daily pee data captured in my spreadsheet and plotted in line charts. So, I have data to beat the band. But my data show me with a daily leaking average hovering a bit more than 400ml, far above the 250ml recommendation by AMS. I doubt they would consider me a good candidate for their sling or to appear in their ads, saying "I leak less than before!" That's not the kind of success they want to highlight.

I've watched the implanting of both slings and AUSs on YouTube videos and, you're right, it's not for the faint of heart. But I also watched a prostatectomy on YouTube too to get an idea of what I would be going through. My wife is an RN and I try to have as strong of a stomach as she does.

If anyone has done a study of the correlation, if any, between big prostates and incontinence after surgical removal, then they haven't posted it on the Internet yet, at least where I can find it. I suspect there may be a correlation (my hypothesis) but, without the data, that's just sheer speculation, i.e., no proof for or against. I would love it if NIH were to look into it - I want to know!

Mike
✚ New Topic ✚ Reply
123456789