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AMS 800 artificial urinary sphincter

Trew
Posts: 891
Joined: Jan 2010

One of many links with a diagram showing the device:

http://www.phoenix5.org/Basics/treatsides/incontinence/ams800.html

Is this the best device now available?

Best place to have this procedure done?

Interviews RE the artificial sphincter:

http://www.delawareurologic.com/audio/#video

I have a good friend who had bladder reconstruction after bladder cancer and he may be interested in one. Hey, some of us PC guys might be interested in one, too, so add as much info as you can about "Control Issues."

ob66
Posts: 214
Joined: Apr 2010

10 days out Trew, and I think I can answer your question. I still feel uncomfortable from the swelling (which has gone down tremendously) and the suture sites. Getting up and down is a bit tough, especially from a sofa. I plan to teach a class for an hour and a half next Monday (14 days out) and think I will be just fine. If you can do things that give you a break now and then it would be best. I couldn't imagine having to be on my feet all day with no break, etc. but other than that I think you can function well. Quite frankly, I am going a bit stir crazy 10 days post op, and you can guess that means I don't feel all that badly. No driving in the first 2-3 weeks though.

Trew
Posts: 891
Joined: Jan 2010

That sounds doable to me. Here i am jumping up and down in my corner yelling, "Do me next, do me next!" I really do envy some of the guys who are 3- 4 weeks out and everything is working for them.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

I'm trying to remember three years back. I had surgery over Christmas break and was back to work around January 10th. It seems like I had 3-4 weeks to recover. You should be OK for an hour or two, but I wouldn't want to stand or sit all day. Remember too, you will still be incontinent. You'll feel much better about everything when they push the magic button.

ob66
Posts: 214
Joined: Apr 2010

Getting to the point where I am glad to have had this surgery, and can't wait to activate. However, a strange thing has happened that I wonder if others have experienced. Since the final catheter removal, my stream is finer, a little bit harder (diaphragmatic help) to urinate, but lo' and behold I am near continent without activation. I was glad to be down to 3-4 pads a day pre-AUS surgery. And those were full pads. Now I am 1-2 pads depending on the day and the desire for complete hygiene at any one moment. Really at a point where it is very liveable even without activation. Do you remember Skid Row Tom???

Trew
Posts: 891
Joined: Jan 2010

That is encouraging news, ob. Keep posting on your progress- please.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

Yes, you jogged my memory. As I recall, I had more control awhile after surgery. Then, it was back to "normal" (leaking). My theory was that things were good and swollen in there which created enough pressure to hold things back. As the swelling dissipated, the leaking returned. Not what you wanted to hear -- and I hope your experience is different.

Trew
Posts: 891
Joined: Jan 2010

Good heads up on all of this. I hate medical surprises- I have had enough of them!

flyfisherdon
Posts: 5
Joined: Jun 2010

I also seemed to have more control prior to the activation, made me wonder if I had jumped the gun to get the AMS800.
Now almost 2 years to the day, since I had it installed, have to say it was the best thing to have had done.I had contemplated a sling, but my leaking was too bad.
My findings are similar to Skid Row Tom.
I was looking on Google for a bicycle seat that would not activate the AUS while riding.
I had bought one with a hole in the middle, but it did not work well, so I am wondering if anyone on here has found a seat that does not compress the cuff?
I do find that I need to wear a VERY light pad per day, but mostly from impatience after voiding, not waitng sufficient time for the cuff to fill up completely. MUCH better than the 4-5 pads per day before the AUS.
Finding the correct Uro to install it is a must! I would recommend finding one that has done a lot of them, and can adjust the tube length properly.
I had mine done at the University of British Columbia Hospital( a teaching hospital)Urodynamics test and cystoscopy don't bother me, the Uro lets me see on the monitor what he is seeing, so I can ask questions as he does it.
Don

harvs
Posts: 54
Joined: Jun 2003

I use the Easyseat II form Hobson - works geat.

flyfisherdon
Posts: 5
Joined: Jun 2010

Harvs, thanks for the info on the Hobson, I have ordered one, and it is "In the mail"
My wife and I are celebrating our 50th Anniversary at the end of this month, and are taking a trip to Europe, so probably will have more time to test it when we return.
Don

hightide
Posts: 26
Joined: Jul 2010

I am a new member (just found this site this week ) I had both the AUS & the implant put in June 23rd. I am now 24 days post op and am wondering when I should be able to feel the two new toys that have been added to the marble sack ? Still have some swelling but not anything like the first two weeks! I am scheduled to activate August 11 , will the tenderness be gone by then ?

Trew
Posts: 891
Joined: Jan 2010

Hightide, keep us posted on your progress, ok. I am scheduled to see this doctor on Aug. 303:

http://www2.med.umich.edu/healthcenters/provider_profile.cfm?individual_id=110473

I have to get a stricture problem fixed first, then can get an AUS installed- I hope I can get this all done by Xmas of this year. I have never even considered the other implant. The Eligard still has me all messed up in that area. I have no idea if that will ever work again or not.

hightide
Posts: 26
Joined: Jul 2010

Trew, I will post my progress as often as I can. I sure am glad I found this forum and I hope some of the guys that have had this for a while and any that are further along than I am will answer some of the questions that come up now and then. I had my DiVinci done by Dr. Randy Fagin with the Urology Team in Austin Texas. I was almost dry until the radiation therapy, then the the wet season came and was not getting better. Went back to the Urology Team and had the implants put in by Dr. Bryan Kansas. This team is a great bunch of urologists (five men & two women)each with a special area of intrest. I think Dr. Fagin was number eight in the country on DiVinci back in 2007 when he did mine. Last month Dr. Kansas put both of my implants in at Saint Davids outpatient surg. center. He started at 9:00 am and I was back at the hotel at 3:30 pm. Went to his office on Thur.(the day after surgery) and left for home on Fri. (Home is eleven hours away). Dr. Kansas called and got my local urologist to just check me two weeks post op and also set up for him to activate the implants Aug. 11. Now I am just in a holding pattern and have not had any problems (knock on wood) so far.

tdorman
Posts: 21
Joined: Jun 2010

My Uro tells me the AUS will not last as long when implanted after radiation? Maybe 4 or 5 years. I had a RP in 1996, then IMRT in 2003. Anyone have any experience with this or told differently by your Uro?

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

Hello everybody and welcome Hightide.

I've had an AUS since early 2007. I've been absent from the board for about four weeks because I just got back from an 8,000+ mile motorcycle trip across country -- unthinkable without the AUS. I'm unsure about the "two new toys" -- I have one -- the pump that is now in the bag with the marbles. By August, you should be able to feel the pump and the tubes leading into it. It would REALLY help if your doctor had a model of an AUS so you could feel what you're searching for. My doctor didn't, and all I had were pictures. It took me a while to figure it out. At some point, you'll be able to feel the "reservoir" -- it's about ping ball size -- mine is on the right side about where the appendix is. You can't see it, but if you press on your skin, you can feel it. You won't be able to feel the cuff, but if may cause minor discomfort from time to time. It took me about 6 months for the tenderness to totally wear off and for me to come to the realization that this is the new normal for me and to make certain adaptations. Make sure you order a medical ID. Any questions -- just ask.

hightide
Posts: 26
Joined: Jul 2010

Hey Tom, Thanks for the welcome and your input on my questions. I am just a little nervous about how things will go when I go to get every thing turned on in Aug. Don't want them doing a lot of adjusting if you know what I mean.

Glad to hear that you are doing well and that motorcycle trip sounds awsome. I also ride. I have a 2003 Harley Springer Softail. The leaking had ut me down to just short trips but I am hoping that when I get over the surgery and heal up I can get back to some longer rides.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

There shouldn't be any adjustment. I certainly understand that you don't want any more poking and probing around (more pain). The doctor should basically push a button at the top of the pump (located in your scrotum) and give the bottom of the pump a squeeze or two. From that point on, peeing will be a two-handed operation. You'll have to drop your drawers, hold the tubes/top of the pump with one hand and squeeze the bottom of the pump several times with the other hand. You'll pee like normal, and that's it. I haven't been able to pee in a urinal because of the drop your drawers/two-handed operation thing. Maybe you can figure it out. I just go into a stall in public restrooms. It doesn't hurt to squeeze the pump, there are no weird sensations, and you'll still feel the urge to pee just like the old days. Little kids and dogs make me nervous because they tend to jump and hit your balls, and that area with its pump, tubes, and other contraptions have to be protected at all times.

I had a Softail Springer. I loved that thing. I had 50,000 miles on it when I sold it and I still miss it. My wife and I travel so much, I felt I needed something "bigger", so I bought a 2005 Road King Custom. It came with saddlebags and I bought a detachable tour pak. My wife has a Fatboy. She's been a motorcycle safety instructor for years.

flyfisherdon
Posts: 5
Joined: Jun 2010

I differ from you Skid Row Tom. If I feel between the scrotum and anus , I can feel the cuff,perhaps where it is located on me is different to you.
If I was going to ride a motor-bike, I would get a custom seat made with a channel/slot down the middle where I sit. I think thatif you don't, you will tilt the cuff and get leaks.
Even if I sit on a bar stool, with one leg dangling to one side, rather than sitting straight the cuff will leak.
Sure beats the pads/pants though!
Don

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

I can feel the cuff if I probe around. It's "hidden away" and not quite as noticeable as the pump and reservoir, however. I have a Sundowner seat made by Harley. It's better than stock (anything's better than a stock Harley seat), but I still get a few dribbles of stress incontinence during the day no matter if I'm on my bike of just going about things as normal. That's why I have to wear a liner. It sure beats wearing thick pads and changing them 4-6 times a day or wearing incontinence underwear (and sometimes both). Reading the AMS 800 literature, it says you should avoid sitting on hard surfaces (bar stools, benches, etc.) probably resulting in the tilting of the cuff you mentioned. However, I sit where I want with no problems (other than a dribble or two). I went to my urologist yesterday for my semi-annual check-up and annual PSA. I keep telling him that the AUS, although not perfect, has given me my life back and I do what I want with little concern about incontinence. Before the AUS, incontinence was controlling my life causing me to withdraw from social situations and limiting activities. Now, I feel I'm free.

hightide
Posts: 26
Joined: Jul 2010

I am due to get my 800 turned on Aug. 11 . I can feel the pump but cannot feel the top to hold like the vidio shows. Maby by the time I go to get activated I will be able to feel the whole thing, I sure hope so. Other than PC , I find it amazing that I have bike riding in common with Tom and like Don, I am an avid flyfisher and tyer like Don. Enjoyed your comments guys.
Regards,
hightide

Trew
Posts: 891
Joined: Jan 2010

The same day I will be evaluated for getting a urethroplasty done. Seems like that is the door I must go through first if I am going to get an AUS. And Aug 11 at 2: 30 is the time of my appointment.

Hightide, I wish you well.

hightide
Posts: 26
Joined: Jul 2010

Good luck with your procedure, I am sure you will do well. Heal up and then move on to the AUS-800. I can't wait for a dry day & night!!!!
Regards,
hightide

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

After mine was activated, I was still swollen in certain areas and couldn't feel the top of the pump. I did locate the tubes going into it, however, and that's what I was grabbing when I squeezed the pump. Like I said, I REALLY think all urologists who install this thing should have a model in their office so the recipient can get a tactile sensation of what they're feeling for and what it feels like to squeeze the pump. Regardless, it all worked out. For what it's worth, my pump doesn't hang vertically like the pictures and videos show. It's somewhat at a 45 degree angle, and if it's cold, it rotates to near horizontal, but it doesn't hurt and it's still functional. Yours may change positions a bit in a few months, too.

hightide
Posts: 26
Joined: Jul 2010

Hey Tom, thanks for your reply. I still have some swelling also and was thinking that might be why I could not feel the complete structure. I still am setting in a warm tub each day and can identify things better right after I get out. Maby by the 11th most of the swelling will be gone. Just have to much time think about things these days. I just want to get it activated and get DRY !!!!
Regards,
hightide

flyfisherdon
Posts: 5
Joined: Jun 2010

Hightide, Just returned from fly-fishing pink salmon in Campbell River,BC,Canada this morning.Caught too many to count:-)
I found that before the AMS800, and because of the incontinence, I had lost a lot of my desire for fishing.Since the instal,interest has returned.
I had my AMS800 installed at the UBC hospital (University of British Columbia),because my urologist who had done my Radical had never installed one. He did want to activate it, which was ok with me, because I did not want to go back on the ferry to Vancouver to get it activated. He took3 times to finally get it activated, with some instruction from me>
I had actually thought of doing it myself after reading all the literature I could find.
My wife and I are heading to Europe on Monday for a BusTour covering 11 countries, I would never have done this without the sphincter.
It is our 50th Anniversary today.
Don

Trew
Posts: 891
Joined: Jan 2010

Wow- what an encouraging story to build hope on. I had to change 3xs today. Old interests are gone, I just want to stay as close to home as much as possible.

From your posts I understand you never had any problems with strictures? Seems at every turn I run into some kind of complication. The urethroplasty acutally rebuilds a section of the urethra from tissue taken from the mouth- a nice piece of tissue, too, from what I have learned. From the video clip I watched it looks like its over a an inch square. Well, I'll learn about that soon enough.

Thanks for posting- it does make me more hopeful as I wait for my AUS.

hightide
Posts: 26
Joined: Jul 2010

Hey, Trew !! You and I both have a big day comming this Wed. the 11th.
Wishing you the best as you go for you urethroplasty !!!! I am getting both of my implants activated about 8:45am on Wed. morning, hoping I can report that I am DRY!! after the appointment.
Regards, hightide

Trew
Posts: 891
Joined: Jan 2010

Hightide, I won't have the urethroplasty done on the 11th- that is my eval with the U of MI doc who does these surgeries. Still a big step for me. Before I can get a AUS I first have to get the stricture problem solved that that is what the urethroplasty is for.

Again, still a big day for me- 4 tests scheduled and then hear what this doctor says. I"m looking forward to this like it was Xmas. I want to get past this part of my life as quickly as possible now. No holding back, no doubts, just, Dr. Doc, DO SOMETHING! HELP ME!!!

HighTide- I will be thinking of you on the 11th- I wish you well.

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

Trew, I cant wait to here your report from Wednesday. I will be in surgery on Wednesday (Davinci)but I will get to the computer as soon as I can to check in on your appointment. I sure hope you have a wonderful Xmas in August and get everything you wanted under the tree. Sounds like it might be a long day so try to get some sleep unlike xmas eve when we were kids. Best of luck to you.

Ed

Trew
Posts: 891
Joined: Jan 2010

Ejn, thanks- and I wish you the best, too. I didn't find the surgery itself that uncomfortable- and lots of guys get their bladder control back- I'm in that much smaller percentage that didn't.

Wednesday is just an eval to see what can and should be done next. The end result somewhere on down the road should be a new deivce installed to will do for me what my body no longer does. Wednesday is the start of the process that hopefully ends with no more pads!! 1 a day would be more than exceptable, even.

Ejn, I hope you aren't too nervous- nasty turn in your life to be stuck with PC, but life is still good on the other side. For all my whinning and complaining, Ido believe that.

hightide
Posts: 26
Joined: Jul 2010

Hey, don, thanks for your comment on the 30th . Sorry I am just now replying, have been tied up with plumbing problems on some rental property.

I would have loved to have been on that fishing trip !! You and I are about as far away from each other as we can be and still be in the northern hemisphere. I live on the Gulf of Mexico in the Florida panhandle. My wife and I were out there about three years ago. My wife's best girl friend and her husband live in Seattle and we visited them a couple of days and then rode the AmTrack up to Vancouver. Took a big ferry out to Victoria and came back to Vancouver on a Otter sea plane. You live in a beautiful part of the world.

I had my AMS800 and the 700-3 piece penile implant put in at Austin, Texas.The Urology Team there does a lot of them. My local urologist has done some and he is going to turn mine on a week from today!!!! (Aug. 11)

Congratulations to you and your wife on the 50th. Sounds like ya'll are taking a trip of a lifetime.
Regards, hightide

Hds15
Posts: 9
Joined: Nov 2010

My name is Hal. I, like you have had this devise implanted in May 2010 and activated in July of 2010. I am currently urinating 10 to 15 time a day - at night I wake up 4 to 5 times before the sun rises. I'm taking are Vesicare(10mm)once a day. When I asked my doctor how long this situation will continue he tells me I have to be patient - he says everbody is different. I'm going into my 5th month since the activation.
What has been your experience?
How are you doing now?
My e-mail address hds15@aol.com
Any info you could pass on would be greatly appreciated.

chickinvasion
Posts: 3
Joined: Aug 2010

Girl here.
My husband gets the AUS on September 10. I just retired and we had planned for years to take that autumn cruise on the Eastern seaboard. He's had serious incontinence for a couple of years, but he still booked the cruise, planning to take an extra suitcase.
Now I am reading your posts, 'cause I want him to be real about this. Can he fly and do a boat trip 15 days after this surgery?
Reading abut those of you who fish and ride bikes is encouraging. My guy will love to get back to life as he knew it.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

It may be "possible", but not very probable. PLEASE don't let me discourage you (or your husband) -- the AUS turned my life around. But, the surgery is brutal -- much worse, in my opinion, than my radical prostatectomy. Remember, the surgery involves making an incision from your anus to the base of your penis. My sac turned a lovely plum purple color. Having a bowel movement was problematic-- any straining caused the stitches to rip. I was on antibiotics (Cipro) for two weeks and felt like crap. I had to constantly monitor infections and clean myself well because there was moisture and warmth around the incision site, great breeding grounds for germs. For several days, every time I touched myself down there, I came up with fingersful of blood. Sitting was uncomfortable. As I recall (from 2007), it took several weeks for the swelling to go down. Remember also, that this is a two stage process. The first stage is the surgery. You may be "continent" after surgery, but it's due to the swelling. The "continence" wears off after a few days, and then it's back to "normal" (i.e., no control). The AUS is not activated for several weeks after surgery, so I would imagine he'd still be incontinent during the trip.

Again, all the hassle was worth it.

Hopefully, somebody with more recent surgery can chime in.

Tom

Trew
Posts: 891
Joined: Jan 2010

Skid Row, you are providing a much needed service here. Most men may never come close to needing an AUS installed, but for those of us who are likely candidates your's and other's testimony certainly helps with the mental prepration needed for an important surgery like this. That it is more involved and complicated that getting the prostate out is what I have heard in other places. But I no longer care about post surgery pain or swelling- I just want a chance at being "normal" again and getting back out on the trail with a 40- 50 lb pack on my back.

Again, thanks for sharing.

chickinvasion
Posts: 3
Joined: Aug 2010

His cancer was colorectal. It was in 1986. He got surgery and an ostomy, then the chemo and radiation. The urinary incontinence began with prostate TURP procedure about 10 years ago, and it just got worse and worse. At least bowel straining will not be an issue. Trying to look on the bright side here.
Cipro is nasty stuff. When I heard that they have supplies of Cipro to dose the government leaders with, in case of an anthrax attack, I thought, "Yikes! Guys on that stuff running the country???"
Thank you, Tom, for replying and all of you for doing this blog. You are inspirational. So is my guy.
Here's to life! Don't just survive..... thrive!!

Hds15
Posts: 9
Joined: Nov 2010

My name is Hal. I, like you have had this devise implanted in May 2010 and activated in July of 2010. I am currently urinating 10 to 15 time a day - at night I wake up 4 to 5 times before the sun rises. I'm taking are Vesicare(10mm)once a day. When I asked my doctor how long this situation will continue he tells me I have to be patient - he says everbody is different. I'm going into my 5th month since the activation.
What has been your experience?
How are you doing now?
My e-mail address hds15@aol.com
Any info you could pass on would be greatly appreciated.

Hds15
Posts: 9
Joined: Nov 2010

My name is Hal. I, like you have had this devise implanted in May 2010 and activated in July of 2010. I am currently urinating 10 to 15 time a day - at night I wake up 4 to 5 times before the sun rises. I'm taking are Vesicare(10mm)once a day. When I asked my doctor how long this situation will continue he tells me I have to be patient - he says everbody is different. I'm going into my 5th month since the activation.
What has been your experience?
How are you doing now?
My e-mail address hds15@aol.com
Any info you could pass on would be greatly appreciated.

Hds15
Posts: 9
Joined: Nov 2010

My name is Hal. I, like you have had this devise implanted in May 2010 and activated in July of 2010. I am currently urinating 10 to 15 time a day - at night I wake up 4 to 5 times before the sun rises. I'm taking are Vesicare(10mm)once a day. When I asked my doctor how long this situation will continue he tells me I have to be patient - he says everbody is different. I'm going into my 5th month since the activation.
What has been your experience?
How are you doing now?
My e-mail address hds15@aol.com
Any info you could pass on would be greatly appreciated.

Hds15
Posts: 9
Joined: Nov 2010

My name is Hal. I, like you have had this devise implanted in May 2010 and activated in July of 2010. I am currently urinating 10 to 15 time a day - at night I wake up 4 to 5 times before the sun rises. I'm taking are Vesicare(10mm)once a day. When I asked my doctor how long this situation will continue he tells me I have to be patient - he says everbody is different. I'm going into my 5th month since the activation.
What has been your experience?
How are you doing now?
My e-mail address hds15@aol.com
Any info you could pass on would be greatly appreciated.

Hds15
Posts: 9
Joined: Nov 2010

My name is Hal. I, like you have had this devise implanted in May 2010 and activated in July of 2010. I am currently urinating 10 to 15 time a day - at night I wake up 4 to 5 times before the sun rises. I'm taking are Vesicare(10mm)once a day. When I asked my doctor how long this situation will continue he tells me I have to be patient - he says everbody is different. I'm going into my 5th month since the activation.
What has been your experience?
How are you doing now?
My e-mail address hds15@aol.com
Any info you could pass on would be greatly appreciated.

Hds15
Posts: 9
Joined: Nov 2010

My name is Hal. I, like you have had this devise implanted in May 2010 and activated in July of 2010. I am currently urinating 10 to 15 time a day - at night I wake up 4 to 5 times before the sun rises. I'm taking are Vesicare(10mm)once a day. When I asked my doctor how long this situation will continue he tells me I have to be patient - he says everbody is different. I'm going into my 5th month since the activation.
What has been your experience?
How are you doing now?
My e-mail address hds15@aol.com
Any info you could pass on would be greatly appreciated.

Africanpaddler
Posts: 2
Joined: Jun 2012

Hi Harvs and all other members

I had a RP in March 2005. Incontinent since and deteriorating. I am getting an AUS (the AMS 800) fitted this week here in Port Elizabeth South Africa.

I am going to miss cycling and saw references to the Hobson Easyseat II. Are all users happy with it in combination with the AUS? I am going to have to import one and the pricetag here in SA is the equivalent of eight cases of beer, or eight bottles of Bells Scotch Whisky, so this is an important decision; either become an alky or get fit again!

Africanpaddler
Posts: 2
Joined: Jun 2012

Hi Harvs and all other members

I had a RP in March 2005. Incontinent since and deteriorating. I am getting an AUS (the AMS 800) fitted this week here in Port Elizabeth South Africa.

I am going to miss cycling and saw references to the Hobson Easyseat II. Are all users happy with it in combination with the AUS? I am going to have to import one and the pricetag here in SA is the equivalent of eight cases of beer, or eight bottles of Bells Scotch Whisky, so this is an important decision; either become an alky or get fit again!

mrspjd
Posts: 688
Joined: Apr 2010

Afri,

You might find some helpful info about bike seats, biking & PCa on the following thread:
http://csn.cancer.org/node/200264
It probably wouldn’t hurt to repost your question on that thread also. Good luck.

mrs pjd

Trew
Posts: 891
Joined: Jan 2010

I am seeing Dr. Latini at the U of MI. She is waiting for scar tissue to settle down and the bladder neck to stablize. Until then I just wait and use up my supply of pads. I see Dr. Latini again on Jan 3. Until then......

So it goes.

Hds15
Posts: 9
Joined: Nov 2010

My name is Hal. I, like you have had this devise implanted in May 2010 and activated in July of 2010. I am currently urinating 10 to 15 time a day - at night I wake up 4 to 5 times before the sun rises. I'm taking are Vesicare(10mm)once a day. When I asked my doctor how long this situation will continue he tells me I have to be patient - he says everbody is different. I'm going into my 5th month since the activation.
What has been your experience?
How are you doing now?
My e-mail address hds15@aol.com
Any info you could pass on would be greatly appreciated.

Trew
Posts: 891
Joined: Jan 2010

Hds- I am still waiting to get cleared for an AUS. My urethra is a mess and the docs at U of MI won't install one in me until the tissue stablizes. So I just pee my pads all day. What a way to live!
I think I have had enough of all this, I am going back into denail!

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

I've had the AUS since spring of 2007. After activation, the number of times I urinated during the day were "normal". Sometimes I have to get up once a night, but oftentimes I don't have to pee during the night. I'm wondering if you're experiencing bladder spasms. The AUS shouldn't make you pee any more or any less. Hopefully, your bladder will settle down. You may want to ask the doctor abvout things to avoid until it settles down -- alcohol, caffeine, etc.

Trew
Posts: 891
Joined: Jan 2010

I started radiation 1 year ago. Surgery was in march 09 before that. Since surgery I have been getting up 3- 5 times a night, but the last 4- 6 weeks I am getting up about once a night and the sleep is wonderful. I am not leaking nearly as much at night either, but still very limited control in the day.

Just sharing that sometimes time makes the difference. I tried flomax- but I had a number of problems with it and quit.

Skid row- nice to see you again. My next U of MI appointment is jan 3. Maybe then I will find out IF/When i can get an AUS installed.

Until then, back into enduring for me.

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