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

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Posted 5/3/2014 11:15 PM (GMT 0)
Bill:

I just sent you an email with our plans.

Drop me an email!

Coffee get-together sounds great!

Mel

Posted 5/4/2014 1:57 AM (GMT 0)
Mike,

Actually, there are quite a few studies that talk about it. I typed

" pubmed prostate-size recovery of continence "

into a Google search and got pages of studies. In general the conclusion was that men with larger prostates recover continence more slowly but, otherwise don't do any worse, and their eventual levels of continence are similar.
Posted 5/4/2014 2:07 AM (GMT 0)
Since I am thinking about a sling and, maybe, an implant at the same time, I've been watching some of those YouTube operations for various kinds of sling -- mostly so I will know what sort of bandaids to expect when I wake up.

It occurred to me that if you are going to get a sling it is really convenient to be a woman. It saves the surgeon all the bother of turning you into a woman, poking a bit of mesh into your new lady bits and then turning you back into a guy.
Posted 5/4/2014 2:51 AM (GMT 0)
Thank you, Peter! I'll go take a look at some of the studies, using your search parameters. It certainly makes sense to me that men having bigger prostates going into a prostatectomy would have a harder time regaining continence afterwards. I'd be pretty curious about how long it takes for such men to have similar levels of continence as men with smaller prostates: months, years, etc. For me, it's been 2 1/2 years and I've pretty much leveled off in my improvement. And my urologist agrees: I've seen about all the improvement I'm going to get without a sling or AUS.

Mike
Posted 5/4/2014 3:00 AM (GMT 0)
Peter, there is at least one YouTube video (animation) of a procedure putting in a male sling and an IPP simultaneously. I can't imagine all that equipment being stuffed inside a guy at the same time. Recovery time must be a bear!

I had never thought of the sling procedure turning a guy into woman and then back into a guy again but the description sort of fits, doesn't it? smhair

Mike
Posted 5/4/2014 3:07 AM (GMT 0)

Beothail said...
.................

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. ................

Mike

Wimps. At least I was all man, for once, in one area: 107 gms! Sorry to hear you had such small prostates! turn



PeterDisAbelard. said...
Mike,

Actually, there are quite a few studies that talk about it. I typed

" pubmed prostate-size recovery of continence "

into a Google search and got pages of studies. In general the conclusion was that men with larger prostates recover continence more slowly but, otherwise don't do any worse, and their eventual levels of continence are similar.



Thx, PDA. This is pretty much what my surgeon told me to ease my distress at the 6 week visit about my lack of dryness. I am recently, at 2 1/2 months post op, a little bit better. He also told me that the best single predictor of eventual continence was being dry at night plus being able to hold it until getting to the bath room even if it is a struggle. I have had both of those since the beginning. But when it comes to standing around or especially walking, or recently doing some physical work, I must say knowing the AUS is available is reassuring, and sounds wonderful! But even that has been a little bit better lately.

But while mighty proud of my prostate size, I admit to suffering from AUS envy! turn

Post Edited (BillyBob@388) : 5/3/2014 9:43:44 PM (GMT-6)

Posted 5/4/2014 12:23 PM (GMT 0)
My prostate was 57g like Worried Guy's. I was dry at night almost right away but just dribbled for 21 months. When I talked to my rock star surgeon at 3 months to say I am still leaking, he said that my prostate was large and pressing against the bladder for YEARS! He said sometimes it takes awhile for the bladder to realize that that pressure is now gone and it can relax. Well, I guess my bladder never got the message. Later, my surgeon told me to try to go without a pad at home. He says sometimes you can trick your mind to leak less. Well, that didn't work either, I had to change underwear often.

I tried pelvic floor therapy. Down here in So. Florida, I had a hard timing finding anyone who does that. I went to my first appointment and one of the things he did was hook me up to a machine that sent small electrical charges from my ankle, kind of like acupuncture, for 20 minutes. While I was sitting in a recliner for 20 minutes, I talked to a guy next to me doing the same treatment. I asked him how long he had done it. He said about 1 year. I asked if it helped? He said no, not really. Then I asked why he continued to do it. He didn't have an answer. At that point I made up my mine, this was not going to help.

The next time I met Dr. Patel, he recommended a doctor from Miami that taught him at the University of Miami, in fact he also taught my regular urologist also. I didn't realize until I got there that his specialty was fixing incontinence surgically. What I thought was going to be another pelvic floor therapist was a surgeon. The doctor asked me "Can you tolerate the leaking." At the time I said yes. Then he said to call him when I couldn't tolerate it any more.

At that time, I wasn't ready to go to that extreme but on the drive home I grinned to myself that that was Dr. Patel's way of saying this is the next step to takeout without actually saying it.

It took me another 7 months of leaking before I was ready to take the next step.

Bill from Florida cool
Posted 5/4/2014 4:08 PM (GMT 0)
Wow, BillyBob, that was one monster prostate you had! smhair The surgeon could have given it to you after it was taken out and you could have played basketball with it! smilewinkgrin

Knowing how much of a squeeze my little prostate put on my urethra, I can imagine the trouble you must have had getting a stream going when you had to pee. Without terazosin, I couldn't pee at all.

Mike
Posted 5/4/2014 4:17 PM (GMT 0)
Bill, it also took me a while to get so disgusted with the leaking that I finally gave in and decided to undergo another surgery. I was hoping to avoid it but eventually conceded that Kegels, pelvic floor strengthening, biofeedback, etc, just weren't going to get me there. Nothing I tried seemed to lead to a marked improvement and I couldn't accept the status quo. My urologist had asked me how much leaking I could live with and I said not this much! So, I hope to be joining the "magical device" club soon!

Mike
Posted 5/4/2014 4:21 PM (GMT 0)
Would acupuncture help for incontinence?
Posted 5/4/2014 6:14 PM (GMT 0)
Squirm,
I forgot what the procedure is called but somewhere in your ankle is a point that ties in with your bladder and the treatment sends electronic pulses for 20 minutes per session.

Bill from Florida cool
Posted 5/4/2014 8:14 PM (GMT 0)

Beothail said...
Wow, BillyBob, that was one monster prostate you had! smhair The surgeon could have given it to you after it was taken out and you could have played basketball with it! smilewinkgrin

Knowing how much of a squeeze my little prostate put on my urethra, I can imagine the trouble you must have had getting a stream going when you had to pee. Without terazosin, I couldn't pee at all.

Mike

Mike, I know, the size is preposterous. I have felt much lighter ever since the surgery and my clothes fit looser!

But want to hear another odd thing? I really didn't have all that much problem with symptoms. I wish I had, it might have forced me to the Uro earlier! Sometimes I peed slow, sometimes I peed pretty good, though no match for now of course. But I always peed enough to get the job done in acceptable time. How is that possible with 107 gms?

No prescription medications! 20+ years of Saw Palmetto and on and off zinc supplementation, both really more for prostatitis symptoms than for BPH. The prostatitis started in my early 30s. After several trips back about every year or so for more antibiotics- which always cleared it up wonderfully- I asked my Uro "Is this it for life?". He said "you might want to try some zinc, there are some studies". I did and it was a great help, cut my uro visits down to every few years. Then I discovered Saw Palmetto, with or without zinc, and symptoms were controlled so that I never had to go see him again. Too bad about that though, I now wish I had been forced to go see him much earlier! But the whole time, I never suspected that such a giant prostate was lurking in there, though I assumed it was enlarged.
Posted 5/4/2014 8:35 PM (GMT 0)
My prostate was measured at biopsy by ultrasound to be 137 cc. I can still get through the night but if I wait too long after feeling the urge I can take a while to start. Dr says I will need a turp before radiation therapy if I go that route. Now on a proscar regimen to reduce the size.
Posted 5/5/2014 2:55 AM (GMT 0)

ShinytopPC said...
My prostate was measured at biopsy by ultrasound to be 137 cc. I can still get through the night but if I wait too long after feeling the urge I can take a while to start. Dr says I will need a turp before radiation therapy if I go that route. Now on a proscar regimen to reduce the size.

You Da Man! smhair
Posted 5/5/2014 3:40 AM (GMT 0)
ShinytopPC and BillyBob,

I don't know how you guys are/were able urinate at all with prostates that big! Maybe your urethras are made of cast iron, able to resist all those foot-pounds of pressure exerted by VERY enlarged prostates. I'm pretty convinced that my enlarged prostate is what led to my extended incontinence problems following surgery. I don't know what the prostate to me did but, once it was gone, my system went from full "off" to full "on." The leaking has gotten less over the past 2 1/2 years but now I have to admit that it's not going to get any better on its own.

Mike
Posted 5/9/2014 3:06 PM (GMT 0)
Well it was 4 weeks ago today that I had the AUS installed.
Yesterday was my 2 year anniversary of the day I was diagnosed. I knew it was coming up and I wasn't sure how I was going to handle it. I reflected off and on all day what the past 2 years have been like. Remembering what my urologist said right after he told me, "I am afraid you have cancer", he said "from this point on, your life is going to change". That was a rather profound statement!

This forum has really helped me get by on a day to day basis. I am always logging in to see if a newbie has just joined so I can try to comfort and reassure him or his caregiver. Yesterday reminded me of that empty feeling we get after DX.

The GFMPH Florida in March was so great meeting new friends and hugging men that know what it is like having PCa. I don't feel like it is a death sentence, just something I am going to have to live with like diabetes.

The past week the pain in the incisions have really improved. I hardly feel the large incision in my stomach. Last weekend it hurt some, just a throbbing pain from time to time.
The glue they put on it is still there. I took some off that was getting lose. They said it would come off on it's own.

The lower incision is still letting me know it is there. Sitting has gotten better as long as it is on something soft. A hard chair or bench is very uncomfortable causing me to shift around. I have to sit on a stool at the computer at work. I either use a small pillow or just kind of lean on the edge without my scrotum resting directly on it.

Activation will be the last week of the month. The swelling has gone away and I can feel the controller and it's location. I think it will be an easy transition once the AUS gets activated. I had a light pad day yesterday and it reminded me how it was before all this happened.

Bill from Florida cool
Posted 5/9/2014 4:46 PM (GMT 0)
>>>>>>>>
I had a light pad day yesterday
>>>>>>>
Lined or unlined?

Mel
Posted 5/9/2014 6:06 PM (GMT 0)
Lined, Mel.

Call me next week if you want to have a quick GFMPH in WPB!

Bill from Florida cool
Posted 5/12/2014 2:49 AM (GMT 0)
Good following you guys. I have posted before so you may know me as a happy AUS brother.
Just thought I would say that now four years after my AUS I developed an inguinal hernia. I think I may have at least partly caused it by too aggressive use of a penis pump. Had the repair surgery two weeks ago and was playing golf full out in one week. Piece of cake compared to the other surgeries.

There is hope for us 70 somethings after DX, Sling, AUS and now hernia surgery.
Posted 5/12/2014 2:51 AM (GMT 0)
BTW, my walnut weighed in at 70 grams. On the large size too.
Posted 5/12/2014 3:15 AM (GMT 0)
Tall guy,
Thanks for checking in. Glad you are doing well and
just experienced a bump in the road.

Looks like the sling didn't work for you and you had to go to the AUS.
You also had a large prostate, looks like a pattern is developing here.

Bill from Florida cool
Posted 5/12/2014 7:54 PM (GMT 0)
Big Mac,

Glad to know you're on the way for a nice and speedy recovery with very minimal discomfort. So far, I'm still 100% dry but I noticed I'm having some dampness in my crotch area since the AUS activation on March 15 especially if I do a lot of walking so I'm applying baby powder after showering and before going out which helps me dry. Also, my scrotal area is still kinda tender which I think due to the device pushing against the inside wall of my scrotum, not to mention that the constant pressing of the "button" when I pee doesn't help ease the tenderness. I want to know if anybody with AUS implant experienced what I'm going thru right now. I'm giving it another month before I see my AUS surgeon.

Cheers :) Juhno
Posted 5/12/2014 8:31 PM (GMT 0)
Juhno: My activation was April 22nd and I'm having the same exact issues as you, I've heard of guys going out and playing golf the day of their activation but not me. My scrotal incision is still sore and the the device makes things a little uncomfortable too but I have to say being dry again is fantastic.

I am beginning to feel better every day.

How hard is your button to push, mine seems to be pretty hard.

Have you deactivated and then reactivated, I'm a little leery of that stuff but it is amazing the way this thing works.

Good Luck
David
Posted 5/12/2014 9:09 PM (GMT 0)
Juhno and David,

Thanks for both of your inputs. I am being activated 2 weeks from tomorrow and I am getting a little anxiety. I can't change my mind now, I understand but knowing I will have to push the button to pee from now on makes me nervous. Of course leaking the past 22 months hasn't been fun and has been a big adjustment so I am sure I can get used to the button routine.

Hearing you both say it is nice to be dry will be worth all the effort.

My scrotum area still hurts where the incision is. I wonder how long it will take to heal so I won't feel that numbing pain?

Ever had a case where you couldn't find the button?

Bill from Floridacool
Posted 5/12/2014 9:29 PM (GMT 0)
Bill: My bladder has shrunk to about the size of a peanut so I have had a lot of practice with the "button" and so far so good. I think you're going to be amazed at the difference.

My device seems to stay open for about 30 seconds or so which is a pretty long time to be peeing. I have been completely dry except when I am in a hurry and don't let it completely drain.

David
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