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AUS 800 is installed will try to keep a diary kinda

guards
Posts: 72
Joined: Aug 2010

Well I got the 800 on tuesday afternoon and my lousy luck continues! The doctor decided to put in a dual cuff because of my excess leakage (14 + pads a day). The problem now is i shut down completely. by Tuesday night they had to put in a foley cath. as i was in major pain and no way to pass liquid. Doctor is afraid the foley will cause the uretha to fail.
So wednesday AM foley out and do intermittant caths. was using dilaudid for pain as its bad, discontinued. Wednesday evening,we are cathin 1.5-2 hr intervals the pain is bad as no more pain killer allowed. we only get 200-225 0n each cath.
have nurses (GREAT BY THE WAY)contact doctor i need to sleep as i am worn out from the near constant pain. Doctor oks a foley for the night. 1 1/2 hours later nurses still trying to install foley no luck and can't contact doctor. nurse made a major decision and gave me some pain killer in IV . 10 minutes later the cath went in like butter. relaxed the muscles I guess. slept for the night no pain killer needed! In the AM the doctor had a young assoc come in and verify what the nurses and i had told him. He did a cath with dilaudid it was smooth and went well. pain killer back in the game and we are doing intermittant cath again. BTW PASSED over 4 liters of fluid tues/wed night I would have had to do about 14 caths to get me through a pain filled night. Thursday evening 7 Pm I was discharged from the hospital with oral dilaudid soft caths and I had done the last cath in the hospital no problem as the pain killer was admin through the IV connection on my tube that was still connected. Well here I go again about 9 PM I need to cath, take the oral meds don't feel a thing oh well prob my imagination. OK 30 min later I try and try and try, ok give up and try to gut it out. Well at 1 AM i decided time to go to emergency room , wait I have some stiffer caths left from my old self cath days. After a 10-15 minute struggle I get it through I was really being carful as the doc has me scarded to death I will damage the uretha. Wow what a relief. Ok now i got a brain storm. I have spotted a bit right after i cath and seem to be able to pass some liquid.... what if I took the low dose pain killer every 2 hours and try to pass liquid eery time a felt a tinge, holy cow it is helping ! Have a 9 o'clock appointmnent with doc. have not had to cath since 1 AM only pain is some burning as I strain to pass gas and liquid. Got into see doc abt 10 or so. he's not crazy about the plan and wants to do a cath to check retension as we can't get a decent bladder scan. So lays me down on the table asks me to urinate which i pass some liquid hmmmm does a cath and gets less that 100 out something is working!
now its Friday night and I'm home the plan is 2mg oral every 2 hours (the stuff has a quick life 2.8 hours in the body. got enough for the week end and will see where I am at then. bottom line if they are too tight back in to replace them .I keep hoping i start leaking like a bandit soon and I never thought i say that . I really have little doubt this is going to work but the lord is testing me severly.

Roothead
Posts: 11
Joined: Mar 2011

Ok Trew I got it! You must be getting the new iPiss. You have a good sense of humor. When will you be having your implant done?

Trew
Posts: 892
Joined: Jan 2010

that is so funny.

ob66
Posts: 215
Joined: Apr 2010

At my last appointment (April 12) I reported all is well to my urologist. Told him that the only time I have minor spotting is with sneezing heavily. It seemed to bother him as if things weren't perfect. I disagreed with him, saying that if the urethra was clamped tightly enough to stop all spurting that it may be too tight. He seemed OK with that. It is such a minor problem. No leakage otherwise. I find that when I go into to social situations where I want to be assured of NO embarrassment, I use an Ultra thin Tena Pad.

And Roothead, unless things have changed I believe Trew is on for May 9. Hope so.

Trew
Posts: 892
Joined: Jan 2010

On May 9 the doctor will take another look all the way up into the bladder and if it is clean- maybe she will say its time. I"m ready. I am getting anxious about this apppointment- I do not look forward to months more in limbo. I have become so reclusive. I am afraid I stink of urine. My wife says I don't but when I change pads I can smell it- even if it only a few ounces. I am always thinking others must smell me too.

Interesting trend thought, my daily pad weight is down from 15- 20 oz in Jan to about 5- 10 oz a day now. but I still have that occasional pad that is saturated, like this morning, I woke up and had 7.2 oz in my depends. that doesn't happen every night- 4- 6 nights in a row I am very near dry in the morning. then I have a morning like this morning. I just hate all dripping.

You guys with the AUS installed- keep posting. and do any of you have any nite accidents?

Old-timer's picture
Old-timer
Posts: 109
Joined: Apr 2011

Best of luck to you on May 9. It's obvious that a lot of guys are pulling for you. I'm new on the PC boards. My earlier entries appear in other places on the boards. I'm still fumbling, figuring out how this system works.

I have read all messages about AUS 800 and have learned more than I ever dreamed possible. However, I continue to have questions and I'm still looking for answers.

I am scheduled to see my uro on June 3, go through eurodynamics tests two weeks after that and possible surgery on July 11. I may run into problems inasmuch as I had both RP and external radiation. We'll see what happens.

I too hate the dripping, especially when it overflows the pads at a place where it is not convenient to change the undergarmet.

Roothead
Posts: 11
Joined: Mar 2011

I have had 99% no leaking. A couple of times when I sit on something hard I have an short tiny drip, but not enough to change my underwear. This has happened maybe twice in two months.

guards
Posts: 72
Joined: Aug 2010

Well it is December 8 I made 10 months and the stuff hit the fan. I am sitting here in total dispair, Two days ago suddenly I started leaking big time. I will call my URO tomorrow am totally lost, all the searching I have done it appears I am looking at some kind of surgery reguardless of the reason, body failure or mechanical. I had noticed some increase in spotting due to cough or sneezing recently but no big thing I had a cold for a bit. Then last week I felt much better and started to pick up my activity. Have been pretty inactive all summer. Tried golf and bike and they didn't do to well. So had some chores that had been let go around the house nothing major or particulary heavy work just general stuff all the lifting was very light and I had help. Now I must wear a moderate pad 24/7 using 8-10 a day at least they arent as bad as the guards. but I figure as soon as I contact the uro he will turn it off again snd I'll be back to the full size embarrassment. figures If anything can go wrong it will for me, has not been a great time since 2004. Not sure when I will be back here but someone had to be the first to post a failure Hope you all have much better luck my friends. Take care.

VascodaGama's picture
VascodaGama
Posts: 1549
Joined: Nov 2010

Sorry to read about the failure. I hope your surgeon has a fix and that you return to the “dry” again.

VG

Old-timer's picture
Old-timer
Posts: 109
Joined: Apr 2011

Sorry to hear the disappointing news, Guards. I wish you well as you get the problem corrected. I look forward to your next report. Please accept my words of encouragement and hope.

Jerry

guards
Posts: 72
Joined: Aug 2010

Well I got to get the scope run up me tube again, Lucky me. Doc tried a week of meds to kill any infection and I was still leakin. Good news I dont have any problems with erosion and thats great news. He spent a lot of time up there looking and said everything looked fine so hes very confused ,never seen one like this. so sent me home I'm to turn it off nightly for 8-10 hours to give yretha a rest. In feb will devide how to go from there. this is getting awful long but I want to keep it all together as a kind a diary for a complete reference. I will probably have to have surgery and won't know what to replace until hes inside but at leaast I will only have to spend 6 wks down while it heels. maybe relocate the bands maybe replace it all no idea yet but I'm very glad it is not erosion. well will post after next visit.

VascodaGama's picture
VascodaGama
Posts: 1549
Joined: Nov 2010

Guards

I hope that the doctor can engineer a way to get AUS back working properly. Your thread and news mean a lot to many in our boat. I am continent since RP but I can image what you guys are through.

Merry Christmas
VG

Trew
Posts: 892
Joined: Jan 2010

Guards, I don't know what to say- I can understand your disappointment. I am doing pretty well since having my AMS activated on Sept 19. However, I have started to have a little more spot leakage when sitting the last week or two.

Life after prostate cancer can really suck big time.

I feel your pain and disappointment for sure.

guards
Posts: 72
Joined: Aug 2010

Well The doc went in to find out what is wrong with my 800. It seem's it developed a leak ,so he replaced the entire unit and will get to try again in 6 weeks, lord I'm a lucky bugger lol. Much less problems so far this time. I have to strain to urinate but compared to last time thats nothing. Will provide updates as available. This is turning into a novella.

Old-timer's picture
Old-timer
Posts: 109
Joined: Apr 2011

Needless to say, I have been worrying about you. Yet I know you are tough and that you are a believer in the 800. The fact that you are getting a new one gives me fresh hope for you. Hang in there, Mate. Look for better luck this time. After it gets fixed satisfactorily, we'll throw a party for you!

Jerry

guards
Posts: 72
Joined: Aug 2010

Well went to get my staples removed today and found out that one of the
bands had a small leak that caused the failure. Doc will activate the new
one in 4 weeks he's totally confident it was a malfunction of the device
that was beyond our control !!! ya hoo

guards
Posts: 72
Joined: Aug 2010

Well the new 800 was activated today ,IT WORKED. Now I just hope this one lasts
longer than the last. I guess this falls in the catagory of stuff happens. So many
things could have had terrible results, equipment failure is the least worrysome.
The surgery was much easier this time. Feels so good not to have a pad on!!! Ha I just coughed NO SPOT ! LOL.

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

Glad to hear things are working. I've had mine for 5 years and recently experienced some leaking. The doctor did a pressure test and found that it was working at about 65% efficiency. He said it could be a leak or tissue erosion. He won't know until he performs surgery. A leak would most likely necessitate the replacement of the unit. Tissue erosion would require a second cuff. Anybody with incontinence, I would recommend the AMS 800 without hesitation (even thou surgery is a bit rough). However, if the unit is working "pretty good", but still causes some issues, do you put yourself through another surgery (and an additional 6 weeks of 100% leaking when you await activation)? Tough decision. But I must say, the AMS 800 gave me my life back even with diminished pressure.

harvs
Posts: 54
Joined: Jun 2003

Interesting – I’ve had mine for 5 years and also started to leak.
Been getting progressively worse, now up to about 2 pads a day.
Doc thinks it’s losing fluid and wants to top it off.
I agree – it definitely gave me my life back.

guards
Posts: 72
Joined: Aug 2010

Tom my uro did a scope of my uretha and found no erosion. He was only able to find the leak only after he removed the old unit( was easy to see liquid was low ,I heard that as I was awake this time had a spinal.) I will say the second surgery was much easier than the first. My testicals didn't swell nearly as badly very light on the black n blue lol.
Harv don't think recharge will help much just puts off the inevetible ask to replace the unit , my doc said its not common ? but he has seen a few bad sleeves like mine but I know he has done several. The leak will be nearly impossible to find while the uniy is installed. hope it works out guys and tom I'd do a 3rd if this one failed in a couple a years!

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

Thanks. I think the tissue erosion is my idea -- the doctor saw no evidence of it. But it's definately losing it's "oomph". If I have a lazy day, one liner per 24 hour period catches the few drops and it's no big deal. However, the other day, I pulled the front wheels off my car, sat in a mechanic's chair, and worked on my front disc brakes. Halfway through, I thought "oh oh", went to the bathroom and the liner had soaked through. I was pissed (pun intended). Again, I'm talking about liners, not pads. Of course, if you read the AMS 800 literature, they tell you that you may want to avoid sitting on solid surfaces or riding bicycles as they may cause enough pressure to generate leaks. I found this to be true. Also, sport bikes (motorcycles) can be problematic because you're leaning forward and putting pressure on the device, but my Harley is not a problem because I'm putting pressure on my tailbone. It's interesting that your second surgery was easier. I would put the AMS 800 surgery in the same category as my radical prostatectomy, but considering what each surgery as done for me, I'd do it again.

Over the years, I've been amazed, and somewhat perplexed, about the number of guys that have struggled with this incontinence issue and fret over what to do. Of course, I went through the same process, but had not found this board. I've gone through the exercises, urodynamic testing, injections, etc., told the doctor "I don't want any kind of implant in my body", thankfully rejected the idea of a sling, and have come to the conclusion that the AMS 800 is the only solution to this horrible problem.

guards
Posts: 72
Joined: Aug 2010

Tom you are right about hard seats or even setting wrong. Twice with the first 800
I got out of my car and pissed all down my leg! I have read other places where it has
happened to 800 users. I have some fairly firm car seats. I will also spot if I cough very hard but that was to be expected ,and i do mean spot. Only got 1 bike left my Honds PC but
its been sitting since I totaled my ZZR1200 in 2004 and im afraid I have lost it ! 8 years sitting aint good. My bicycles I have given away , we live a 1/4 mile from a 100+ mile bike path and I used to love to ride. the depression got so bad here I gained 50 lbs sitting on my ass feelin sorry for me. trying to get that part of my life back together been doin work around the house again and playin some catch with my son and grand son so attitude is getting better again. so not I will go to work on my tad pole (recumbent)I bought to get some excersize with .

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

I've loved to ride bicycles since I was a kid. I'm just a casual rider, but since the prostate/incontinence stuff, my bike has gone pretty much unused. I got a different seat, but it's no good. I told my wife it's not the seat, it's the position. I found a bike I'm going to check out next week. It's called a Townie and seems popular with the older crowd. It appears that you sit more upright with your legs a little more out front. They run between $450 and $550, but I'd really like to ride around the neighborhood again.

When I feel a cough or sneeze coming on, I really have to concentrate and SQUEEZE what's left of my muscles down there. I have a Subaru Forester that allows you to slide right in and out and doesn't give me a problem. However, my Subaru Impreza sits lower, and I have to squeeze in order to turn a potential squirt into a dribble. Thankfully, a liner is sufficient (rather than a pad) on all but EXTREMELY active days. And I wish marketing departments would call them "liners" instead of "panti-liners". We suffer enough humiliation without that!

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