AMS 800 artificial urinary sphincter

Trew

lewvino said:

So glad to hear that things
So glad to hear that things are looking up for you!

Larry

Larry, the thought is nice,
Larry, the thought is nice, but "looking up" is a bit of a stretch for me this afternoon.

Right now I am fully and completely in a "I hate PC" mood. The doctor asked me if I had any problems with continency before surgery. I can hardly remember those days when everything worked perfectly. I miss those days so much. Forgive me- just a bit weepy here....

bdhilton

Trew said:

How It Went
All I know is that first he injected me with a pain killer- I can't imagine what it would have been like without the shot- then he ran a very large tube down me- this is the 2nd time after his initial scoping- and then he started pushing wire down into the tube- much like the file stuff a dentist uses in a root canal- each wire a different coarseness. I think there were 3 filings- but by them I was just moaning softly to myself and wondering if we would be done by Xmas. He did not mention size of opening, nor did I ask. I did not what to spark any further interest on his part in extending the procedure.

And some people simply have a prostate removed and are dry 3 or 4 weeks later! IF I was one of those guys and reading my postings- or yours Skid row- I would give a prayer of thanksgiving every morning and night. And after all this I am still a T4 with a good chance of recurrance. Now wouldn't that be icing on the cake!!

Have I ever stated before that I really really hate PC?

And yes, once again, for all practical matters, I was naked in the presence of a strangers- a doctor and his nurse assistant.

My, but I do hate PC!

At the beginning of my
At the beginning of my journey I attempted to be “modest”…by the time I left the hospital after surgery all modesty when out the window… I no longer care who sees me naked (just like 40 years ago)…I guess I am really just an old hippie…

Trew

Skid Row Tom said:

Dilation procedure
Did the doctor tell you how "wide" they dilated you? It's usually stated in "French units". I had this procedure done (for scar tissue) at Johns Hopkins -- no drugs, no anesthesia -- you just laid there and took it like a man. This is the procedure that I think led to my incontinence. They started with a "12 French" and widened it to "22 French", which my current urologist said "I wouldn't have done it that much". I was recovering from PC great -- very little if any dribbles -- until scar tissue made it difficult to pee and then the procedure..... I'd love to know what your doctor did.

The Morning After the "Root Canal"
One thing about the procedure done yesterday I know a lot better when I am dribbling. Those first drops are like acid on a cut. IF I lie very still on my back while sleeping I have found I don't leak a bit. Turning onto my side, well, I know now I do leak some. Every turn releases a few drops and I think I felt them all during the night.

Skid R Tom, I think I had it a little better than you. At least I did get an injection of a pain killer, and I am no worse off this morning than I was yesterday morning before the procedure as far as leaking goes. But maybe my procedure was a bit diffrent than yours. Like I said, on me the doc inserted wires into the main cath line and filed away on me. I am surprised there is no bleeding this morning.

I think he said in three weeks he wants to have another look. Boy oh boy, I do hope I misunderstood him.

Skid Row Tom

Trew said:

The Morning After the "Root Canal"
One thing about the procedure done yesterday I know a lot better when I am dribbling. Those first drops are like acid on a cut. IF I lie very still on my back while sleeping I have found I don't leak a bit. Turning onto my side, well, I know now I do leak some. Every turn releases a few drops and I think I felt them all during the night.

Skid R Tom, I think I had it a little better than you. At least I did get an injection of a pain killer, and I am no worse off this morning than I was yesterday morning before the procedure as far as leaking goes. But maybe my procedure was a bit diffrent than yours. Like I said, on me the doc inserted wires into the main cath line and filed away on me. I am surprised there is no bleeding this morning.

I think he said in three weeks he wants to have another look. Boy oh boy, I do hope I misunderstood him.

The cysto "afterglow"
MAYBE I have good news for you. After each of my cystos, it took a few days, and up to a week to get back to "normal". Even my AUS wasn't as effective. Things are pretty stretched out in there, and I think it takes a few days for tissues to snap back into shape. Hopefully, your dribbling will stop shortly.

About the cysto "afterglow"..... Anyone having one should INSIST on medication to stop the burning when you pee afterward. I have a prescription for Phenazopyridine (200 mg). It's an orange pill that makes you pee orange. I guess it neutralizes the acid from blood and urine, and without it, it's like peeing razor blades with an alcohol chaser. Take it immediately after your procedure or as soon as you wake up from anesthesia. Drink as much water as you can, and your first and subsequent pees should be delightful. Otherwise.....OOOOWWWWWW!

Trew

Skid Row Tom said:

The cysto "afterglow"
MAYBE I have good news for you. After each of my cystos, it took a few days, and up to a week to get back to "normal". Even my AUS wasn't as effective. Things are pretty stretched out in there, and I think it takes a few days for tissues to snap back into shape. Hopefully, your dribbling will stop shortly.

About the cysto "afterglow"..... Anyone having one should INSIST on medication to stop the burning when you pee afterward. I have a prescription for Phenazopyridine (200 mg). It's an orange pill that makes you pee orange. I guess it neutralizes the acid from blood and urine, and without it, it's like peeing razor blades with an alcohol chaser. Take it immediately after your procedure or as soon as you wake up from anesthesia. Drink as much water as you can, and your first and subsequent pees should be delightful. Otherwise.....OOOOWWWWWW!

AFTERGLOW!!!!
The doctor did not mention anything about taking a Rx. Certainly he mentioned nothing about Phenazopyridine. I had some vicodin around the house and I have been using that this morning- it does take the edge off. Peeing razor blades is not far off the mark. My wife said I look like I am being tazered when I pee, at least I did this morning. Right now I am just very mellow and slow. I'm going back down for an extended nap and concentrate on being very still- no drips allowed!

And thanks for responding to the personal message. This dripping is not going to last for years.

Trew

Skid Row Tom said:

The cysto "afterglow"
MAYBE I have good news for you. After each of my cystos, it took a few days, and up to a week to get back to "normal". Even my AUS wasn't as effective. Things are pretty stretched out in there, and I think it takes a few days for tissues to snap back into shape. Hopefully, your dribbling will stop shortly.

About the cysto "afterglow"..... Anyone having one should INSIST on medication to stop the burning when you pee afterward. I have a prescription for Phenazopyridine (200 mg). It's an orange pill that makes you pee orange. I guess it neutralizes the acid from blood and urine, and without it, it's like peeing razor blades with an alcohol chaser. Take it immediately after your procedure or as soon as you wake up from anesthesia. Drink as much water as you can, and your first and subsequent pees should be delightful. Otherwise.....OOOOWWWWWW!

Orange Pill
My wife knows about this "orange" pill from her years as an RN. She warns the orange urine it produces will stain just about anything it touched except the inside of the toilet. But she says, it works well.

I am working the steps, moving towards a decision....

Skid Row Tom

Trew said:

Orange Pill
My wife knows about this "orange" pill from her years as an RN. She warns the orange urine it produces will stain just about anything it touched except the inside of the toilet. But she says, it works well.

I am working the steps, moving towards a decision....

It's brighter than "just orange"
Your wife is correct -- it will stain everything except the toilet. Your pee is a wonderful fluorescent orange. As soon as the orange begins to fade, you need another pill. Keep this up for two days, and you'll pee without pain.

Trew

Skid Row Tom is One Brave Man!
I had a very good phone chat with SRTom last night. Having the AUS installed is no easy surgery and once again I am reminded PC is no simple cancer. And I consider Tom one brave man.

My conversation with Tom has also prompted me to begin a new drying out program I learned way way back in elem school from the little train....

My new program is......

"I think I can, I think I can, I think I can......."


Everyone wish me luck. If this one doesn't work I'll be one step closer to the knife....

My I do hate PC!!

Tom, thanks again for your time last night.

ob66

Trew said:

Skid Row Tom is One Brave Man!
I had a very good phone chat with SRTom last night. Having the AUS installed is no easy surgery and once again I am reminded PC is no simple cancer. And I consider Tom one brave man.

My conversation with Tom has also prompted me to begin a new drying out program I learned way way back in elem school from the little train....

My new program is......

"I think I can, I think I can, I think I can......."


Everyone wish me luck. If this one doesn't work I'll be one step closer to the knife....

My I do hate PC!!

Tom, thanks again for your time last night.

AUS placement----4 days later
Had the procedure done Monday May 10 as I detailed Trew in a PM....All went well, but Tom is right. The surgery post op is worse than the daVinci surgery for prostatectomy. I have not been uncomfortable as far as pain goes (except that catheter removal backed up yielding unbelievable pain until re-catheterized), but penis and scrotal sacks are just coming down from grapefruit size and are between burgundy and black. Doesn't hurt per se, but movement is gentle at best. Going in this PM for my post op check. Obviously, it won't be activated for another 5-8 weeks. Any help from those that have been there for my stage right now would be appreciated. Ice is my best friend.

Trew

ob66 said:

AUS placement----4 days later
Had the procedure done Monday May 10 as I detailed Trew in a PM....All went well, but Tom is right. The surgery post op is worse than the daVinci surgery for prostatectomy. I have not been uncomfortable as far as pain goes (except that catheter removal backed up yielding unbelievable pain until re-catheterized), but penis and scrotal sacks are just coming down from grapefruit size and are between burgundy and black. Doesn't hurt per se, but movement is gentle at best. Going in this PM for my post op check. Obviously, it won't be activated for another 5-8 weeks. Any help from those that have been there for my stage right now would be appreciated. Ice is my best friend.

Ob, thanks for the update.
Ob, thanks for the update. As for me, well, all day it is, "I think I can, I think I can...." I am hoping chanting this over and over will do what kegels haven't been able to do.

My, I hate PC more and more evry day. And that is the Trewth!

harvs

ob66 said:

AUS placement----4 days later
Had the procedure done Monday May 10 as I detailed Trew in a PM....All went well, but Tom is right. The surgery post op is worse than the daVinci surgery for prostatectomy. I have not been uncomfortable as far as pain goes (except that catheter removal backed up yielding unbelievable pain until re-catheterized), but penis and scrotal sacks are just coming down from grapefruit size and are between burgundy and black. Doesn't hurt per se, but movement is gentle at best. Going in this PM for my post op check. Obviously, it won't be activated for another 5-8 weeks. Any help from those that have been there for my stage right now would be appreciated. Ice is my best friend.

AUS placement----4 days later
Sound like you're doing the right things - - ice and rest
Take it easy with the pain meds
It's all worth it when it's activated.

Trew

harvs said:

AUS placement----4 days later
Sound like you're doing the right things - - ice and rest
Take it easy with the pain meds
It's all worth it when it's activated.

I am thankful I have 3
I am thankful I have 3 expereinced vets to draw insight and guidance from. I wonder if I am leaking enough to qualify, but other times I think what other course is there for me?

I'd like to talk with you, Harvs, sometime on the phone. Could you personal message me with a phone number?

thanks.

Skid Row Tom

ob66 said:

AUS placement----4 days later
Had the procedure done Monday May 10 as I detailed Trew in a PM....All went well, but Tom is right. The surgery post op is worse than the daVinci surgery for prostatectomy. I have not been uncomfortable as far as pain goes (except that catheter removal backed up yielding unbelievable pain until re-catheterized), but penis and scrotal sacks are just coming down from grapefruit size and are between burgundy and black. Doesn't hurt per se, but movement is gentle at best. Going in this PM for my post op check. Obviously, it won't be activated for another 5-8 weeks. Any help from those that have been there for my stage right now would be appreciated. Ice is my best friend.

An AUS "veteran"
I told Trew your balls would swell up the size of a small grapefruit and turn a hideous plum color. I will answer any specific questions you have, or you can call me if you want. My surgery was three years ago. As I recall, I was fairly miserable for about two weeks. If you have a dog or cat, keep them away from you or put a huge pillow on your lap when you sit down. Dogs, cats, and kids have an uncanny knack for clobbering you in the balls. You have to take great pains (sorry about the pun) to keep the area as dry and clean as possible. In addition to the ungodly sight of it all, I found it disturbing to reach down there and come up with fingers full of blood as the incision tends to weep for awhile. The next big step is to have your doctor activate it. Basically he pushes the button on the upper end of the pump and massages the pump until it inflates. My advice to anybody having this procedure -- ask your doctor if he has a model of the AUS in his office. My doctor didn't. You can't tell how it feels by looking at the pictures. And when it was time for me to reach down there, feel for the pump and squeeze, I didn't know what the hell I was looking for. It took me a few days to get it right. Also, I felt it took me about 6 months before I "adjusted" to this new normal. However, if you were like me, your bladder controlled your life. The surgery was a b****, but I congratulate you for getting your life back.

g8rb8

Trew said:

The Direction I am Heading.....
This Tuesday I am scheduled for urodynamic testing to evaluate how my bladder is working.

Testing takes 45- 60 min. I see I need an enema 2 hrs before testing. always an enema! What is with these aliens and their enemas?

And I see the test is being done by a woman. I wonder if I do this naked?

It is just one sort of humiliating thing after another- nake for surgery, enemas, ED discussions, pads, incontinency, AUS, .....

And on 6/9/2010 I get to add a new word to my vocabulary and expereince: Cystoscopy. I am so excited about this- another opporutnity to be naked in front of strangers!

PC really really sucks!

AMEN! When I had my cath
AMEN!

When I had my cath removed post-daVinci, I had a cysto done. So I'm lying on the table, naked below the waist, hooked up and in walks a group of school children. Well, that's what it seemed like anyway. Ah the joys of medicine in a teaching hospital.

But I did get some small measure of revenge by making eye contact with them all and carrying on conversations with them while the doc did the cysto. I think it freaked them out just a little! They expected a mannequin and got a wise-cracking naked man instead.

ob66

Skid Row Tom said:

An AUS "veteran"
I told Trew your balls would swell up the size of a small grapefruit and turn a hideous plum color. I will answer any specific questions you have, or you can call me if you want. My surgery was three years ago. As I recall, I was fairly miserable for about two weeks. If you have a dog or cat, keep them away from you or put a huge pillow on your lap when you sit down. Dogs, cats, and kids have an uncanny knack for clobbering you in the balls. You have to take great pains (sorry about the pun) to keep the area as dry and clean as possible. In addition to the ungodly sight of it all, I found it disturbing to reach down there and come up with fingers full of blood as the incision tends to weep for awhile. The next big step is to have your doctor activate it. Basically he pushes the button on the upper end of the pump and massages the pump until it inflates. My advice to anybody having this procedure -- ask your doctor if he has a model of the AUS in his office. My doctor didn't. You can't tell how it feels by looking at the pictures. And when it was time for me to reach down there, feel for the pump and squeeze, I didn't know what the hell I was looking for. It took me a few days to get it right. Also, I felt it took me about 6 months before I "adjusted" to this new normal. However, if you were like me, your bladder controlled your life. The surgery was a b****, but I congratulate you for getting your life back.

Tom
Just as you described. Almost exactly. Have one problem. I had to be re-catheterized two days post op for I "backed up" when the cath was taken out before leaving the hospital. Yesterday, 4 days post-op the doctor was wanting it out, and I was afraid to do so before the weekend. So I have a fine catheter in, which works well. But apparently the worry is necrosis inside the sheath if the cath stays in too long. So Monday AM I must remove
it myself, and if I back up, it will be self-catheterization which holds no excitement for me. Anyone have such experiences??? Is it a blip in the big picture, or something to worry about. Seems like my grapefruits are going to tennis balls slowly, so it seems the healing is going well. Little to no pain. Lots of sitz baths, Keflex, slow motion, and ice. Thanks for any help.

Skid Row Tom

ob66 said:

Tom
Just as you described. Almost exactly. Have one problem. I had to be re-catheterized two days post op for I "backed up" when the cath was taken out before leaving the hospital. Yesterday, 4 days post-op the doctor was wanting it out, and I was afraid to do so before the weekend. So I have a fine catheter in, which works well. But apparently the worry is necrosis inside the sheath if the cath stays in too long. So Monday AM I must remove
it myself, and if I back up, it will be self-catheterization which holds no excitement for me. Anyone have such experiences??? Is it a blip in the big picture, or something to worry about. Seems like my grapefruits are going to tennis balls slowly, so it seems the healing is going well. Little to no pain. Lots of sitz baths, Keflex, slow motion, and ice. Thanks for any help.

Self-catheterization
Unfortunately, I also have experience with self-catheterization. After surgery and scar tissue formed, they dilated me. They told me I had to do the self-cath thing several times a day to keep the urethra from closing back up. They gave me several to use and it was an ordeal. I think the ones they gave me were size 16 French (the diameter is measured in French units), the end that you put in first was shaped like a ball (imagine balancing a baseball on the end of a bat), and they were reusable (after sterilization). I got on the Internet and ordered some disposable ones that were smaller (14 French -- although if I had to do it over again I would by 12 French), and had a pointed end which made insertion easier. You'll need a big tube of Surgilube Surgical Lubricant. With the new caths (smaller and pointed) it was still uncomfortable but tolerable. When you put it in, it will slide up your urethra and stop and where the prostate is (was). Just take a breath and continue to apply a little pressure and it will slide about two more inches into your bladder. Removing it isn't a big deal. Just pull slowly.

Trew

OK, What IF.......
Now I am starting to play mind games with myself about having a AUS installed, such a, What IF some one tied you to a tree and left you (like a robber)? My wife says, "Like how often has that happened?" But there are other supposes that could happen, a fall on the trail and you are left unconscious for hours. Then your bladder would explode.

Silly stuff like that enters my mind.

There is a 10- 20% failure rate- and I have been moving in on the wrong side of those perscentages since starting this whole cancer thingie.

So what if.......

And can they install this device in females and if so, where do they have the activation button? This inquiring mind wants to know.

cgerhardt

Trew said:

OK, What IF.......
Now I am starting to play mind games with myself about having a AUS installed, such a, What IF some one tied you to a tree and left you (like a robber)? My wife says, "Like how often has that happened?" But there are other supposes that could happen, a fall on the trail and you are left unconscious for hours. Then your bladder would explode.

Silly stuff like that enters my mind.

There is a 10- 20% failure rate- and I have been moving in on the wrong side of those perscentages since starting this whole cancer thingie.

So what if.......

And can they install this device in females and if so, where do they have the activation button? This inquiring mind wants to know.

What ifs
Trew,
I share your feelings. I am scheduled for an AUS July 8th. I am having those thoughts all the time but then I end up changing a pad and/or underware and/or slacks and come back to reality. I don't want to continue this way. I had a sling implanted in February and in six weeks I was back to where I started. I have resigned myself to the fact that the aus is the best last hope to get closer to dry. I have tried everything and just seem to be in that bad percentage of the bell curve. The other helpful thing has been listening to a lot of guys on healingwell.com that have the aus and the are happy as they can be.....so perhaps our feelings are just normal but not warrented....except for the recovery time/pain.
I am starting a thread on healing well to track my AUS surgery experience journey if you want to follow it. Are you scheduled yet or just in the considering stage?

Trew

cgerhardt said:

What ifs
Trew,
I share your feelings. I am scheduled for an AUS July 8th. I am having those thoughts all the time but then I end up changing a pad and/or underware and/or slacks and come back to reality. I don't want to continue this way. I had a sling implanted in February and in six weeks I was back to where I started. I have resigned myself to the fact that the aus is the best last hope to get closer to dry. I have tried everything and just seem to be in that bad percentage of the bell curve. The other helpful thing has been listening to a lot of guys on healingwell.com that have the aus and the are happy as they can be.....so perhaps our feelings are just normal but not warrented....except for the recovery time/pain.
I am starting a thread on healing well to track my AUS surgery experience journey if you want to follow it. Are you scheduled yet or just in the considering stage?

I am into the countdown
I am into the countdown process moving towards a final decision and surgery date this summer. I figure if this AUS doesn't work I can jump off a bridge or something.

Where are you getting you AUS installed? I will see if I can find your thread over on healingwell.

Just a nasty decision to have to make- forget the if's- I just can't stand the leaking any more.

Skid Row Tom

Trew said:

OK, What IF.......
Now I am starting to play mind games with myself about having a AUS installed, such a, What IF some one tied you to a tree and left you (like a robber)? My wife says, "Like how often has that happened?" But there are other supposes that could happen, a fall on the trail and you are left unconscious for hours. Then your bladder would explode.

Silly stuff like that enters my mind.

There is a 10- 20% failure rate- and I have been moving in on the wrong side of those perscentages since starting this whole cancer thingie.

So what if.......

And can they install this device in females and if so, where do they have the activation button? This inquiring mind wants to know.

If tied to a tree...
I'm also on the wrong side of the percentages. However, my AUS has given me my life back. About being tied to a tree -- I still have a bit of stress incontinence. If I sneeze hard or go to the gym and work on the weight machines, I dribble and have to wear a liner. So, I would assume if I really had to go (being tied to a tree and all), I could put a little pressure on my bladder and go. As I understand it, the doctor has to make certain decisions about cuff pressure -- too little and you will leak, too much and it could lead to tissue erosion. So, the cuff isn't supposed to have a "death grip" on your urethra.