AUS 800 is installed will try to keep a diary kinda

guards

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.

Trew

I read this to my wife. We
I read this to my wife. We are pulling for you in all this. I hope when I get to that time in my life I fair better. I have been keeping track of my pad weight for months now. I picked up a postal scale on eBay to do this with. When I get back into U of MI in May I want an accurate picture for the doc of what I am doing.

Scary stuff for sure.

mattmans5

hope you feel better
Thank you for being so honest,

guards

Sunday night and research!
Wow seems I missed a bunch in the posts on the board trew. Seems nearly all had to cath with a foley and intermittant cath! My doc scared me to death with warnings about the dangers involved made me feel much better as I read others problems. Not too worried about 2 foleys to get some rest now. What really seems to work well here is using the pain killer as a relaxer, its really working. On a scale of 1-10 WORST case is about a 3 since Thursdays cath. Next, several had bleeding I have had none. I have some burn where the stitching is behihd my privates and some burn when i pass liquid but its in the output side of the uretha not where the cuffs are. I had no idea that it was common for the flow to be blocked by swelling! I may be in great shape? I guess now its a waiting game. Still no leakage but I am able to void pretty much. I'm able to shower when I want etc. Seems I may be having an easier time than many ,and if doc hadn't taken away pain killer early on it may have been very easy. If you have it done do ot let them remove pain control from your perview ,have a serious discussion with the doc on solutions etc. My last urologist insured I will never let them make that decision for me again. This doctor can at least consider my input and reasoning. Didn't think i would ever hope that my leak would open up again!LOL Probably won't post again till staples come out Wed.

guards

mattmans5 said:

hope you feel better
Thank you for being so honest,

So far yuk
Well the doc was hoping i would open up and flow like i was befroe surgery. One nice temporary side effect is right now I don't drip at all! I have to force the urine out like before I had the turp only tighter. I'm becoming certain I will have to have at least 1 cuff replaced. He put a 3.5 (new size for special teams to try) and a 4.0 in and he seems to think just the 3.5 and I really have to trust him on this one as I have no knowledge base to draw from. Fact is I don't think I have ever read of one being too tight! But 1/2 a mm isnt a lot! Heck of it is I know he wants this to work for me as bad as I do and thats why its cut so close. He knew as a 14 pad a day man I would require a heavy brake LOL. One nice temporary side effect is no pads for the last 5 days ! first time in over 3 years. Will keep this as updated as I can , I know it won't happen till after next week as I am sked to have staples removed Wednesday by his assistant. Now I wonder do they have to do both insicisions again? off to search the web.

ob66

guards said:

Sunday night and research!
Wow seems I missed a bunch in the posts on the board trew. Seems nearly all had to cath with a foley and intermittant cath! My doc scared me to death with warnings about the dangers involved made me feel much better as I read others problems. Not too worried about 2 foleys to get some rest now. What really seems to work well here is using the pain killer as a relaxer, its really working. On a scale of 1-10 WORST case is about a 3 since Thursdays cath. Next, several had bleeding I have had none. I have some burn where the stitching is behihd my privates and some burn when i pass liquid but its in the output side of the uretha not where the cuffs are. I had no idea that it was common for the flow to be blocked by swelling! I may be in great shape? I guess now its a waiting game. Still no leakage but I am able to void pretty much. I'm able to shower when I want etc. Seems I may be having an easier time than many ,and if doc hadn't taken away pain killer early on it may have been very easy. If you have it done do ot let them remove pain control from your perview ,have a serious discussion with the doc on solutions etc. My last urologist insured I will never let them make that decision for me again. This doctor can at least consider my input and reasoning. Didn't think i would ever hope that my leak would open up again!LOL Probably won't post again till staples come out Wed.

Wow guards
I have been off the board for a couple of days, and just saw your initial post. I felt the pain as I read through it, and cannot tell you how much I empathize with you. I am one of the posters who has had a very successful AUS placed last May and activated after RT in August. Life has been a dream since. I guided a friend who eventually had an AUS after having had RT some 15 years ago, and they did the double sleeve in recognition of his tissue quality ( I guess I should say lack thereof). Anyway, all is going well for him. Your post op is a horror story. The idea of self catheterization is beyond scary to me. Couple that with the fact that after my AUS surgery, and on the day of release from the hospital I backed up from the swelling and was in some of the worst pain of my life (I might add I have had 3rd degree burns). You feel like a balloon that has swelled, and will burst at any minute. Through all my daVinci surgery, and my AUS surgery my pain number never went above a 2 or a 3. Two or so hours after that catheter came out it was a high 8 or 9. I can truly empathize with you.
Let me add, that after AUS surgery the swelling will give the effect that you are not incontinent any more (that is prior to activation). Believe me when I say it is but the swelling. Sounds like you are feeling a bit better today, and I hope it continues. Keep us informed. Best wishes.

guards

ob66 said:

Wow guards
I have been off the board for a couple of days, and just saw your initial post. I felt the pain as I read through it, and cannot tell you how much I empathize with you. I am one of the posters who has had a very successful AUS placed last May and activated after RT in August. Life has been a dream since. I guided a friend who eventually had an AUS after having had RT some 15 years ago, and they did the double sleeve in recognition of his tissue quality ( I guess I should say lack thereof). Anyway, all is going well for him. Your post op is a horror story. The idea of self catheterization is beyond scary to me. Couple that with the fact that after my AUS surgery, and on the day of release from the hospital I backed up from the swelling and was in some of the worst pain of my life (I might add I have had 3rd degree burns). You feel like a balloon that has swelled, and will burst at any minute. Through all my daVinci surgery, and my AUS surgery my pain number never went above a 2 or a 3. Two or so hours after that catheter came out it was a high 8 or 9. I can truly empathize with you.
Let me add, that after AUS surgery the swelling will give the effect that you are not incontinent any more (that is prior to activation). Believe me when I say it is but the swelling. Sounds like you are feeling a bit better today, and I hope it continues. Keep us informed. Best wishes.

Pain numbers
OB I'm with you on pain never above 3. The only great pain has been when I went into blockage and the first time was about 3 yrs ago and I was in the ER for 6 hours running a 8-10 till they finally put a foley in!!! I had a lower leg crushed in a mc/car accident and I don't think i hit over 6. Only time I have had great pain has been due to the blockages. Its amazing that a foley even removes the need for pain killer while installed. Your post was one of them I found that used a cath and gave me great solace to know I wasn't alone in fact it appears to be more the norm for sucessful installs. Would be nice if all the Docs and patients would converse like we do here might give them a better handle on best ways to proceed and control pain. Thats kinda what would be nice and my doc has said my input is helpful to him , sure hope he is being serious because I know I can be a pain in the **** but its my body and most of the time it lets me know whats working for me. I know we are all different and react differently to the same drugs. Kinda funny in a way, I cannot take vicodin as I have BAD psychotic (sp) side effects, BAD. moraphine has little effect on my pain (discovered on MC accident) Dilaudid is a pure pain killer extraudinair on me but I am sure different drugs work different for others. Why did you have to wait from may till aug to activate the device? how soon after did you start leaking heavy heavy again? Sorry for rambling but I'm hoping we all have thoughts and maybe we can make it better for others soon.

ob66

guards said:

Pain numbers
OB I'm with you on pain never above 3. The only great pain has been when I went into blockage and the first time was about 3 yrs ago and I was in the ER for 6 hours running a 8-10 till they finally put a foley in!!! I had a lower leg crushed in a mc/car accident and I don't think i hit over 6. Only time I have had great pain has been due to the blockages. Its amazing that a foley even removes the need for pain killer while installed. Your post was one of them I found that used a cath and gave me great solace to know I wasn't alone in fact it appears to be more the norm for sucessful installs. Would be nice if all the Docs and patients would converse like we do here might give them a better handle on best ways to proceed and control pain. Thats kinda what would be nice and my doc has said my input is helpful to him , sure hope he is being serious because I know I can be a pain in the **** but its my body and most of the time it lets me know whats working for me. I know we are all different and react differently to the same drugs. Kinda funny in a way, I cannot take vicodin as I have BAD psychotic (sp) side effects, BAD. moraphine has little effect on my pain (discovered on MC accident) Dilaudid is a pure pain killer extraudinair on me but I am sure different drugs work different for others. Why did you have to wait from may till aug to activate the device? how soon after did you start leaking heavy heavy again? Sorry for rambling but I'm hoping we all have thoughts and maybe we can make it better for others soon.

guards---AUS
I will probably start from the last and answer. Right before my wife and I were to go a long planned cruise, my PSA rose from 0.05 to 0.07 10 months after daVinci surgery. My doctor recommended, and being a very pro-active sort, I agreed on having an AUS installed upon my return followed by the 37 treatments of RT. So I had vacation in April/May, the AUS installed on May 10, healing to mid June, the RT through the end of July or so, with some waiting time thereafter and activation in mid August. In addition I have been on lupron since last April and all my ultrasensitve PSAs have been less than 0.01. With a bit of prodding from Kongo, I did my reading, and have been a convert to a no dairy, no red meat, reduced sugar diet since September. My internist was shocked with my blood numbers (cholesterol, HDL, LDL,, etc.). My weight dropped back to normal, and I feel great.

One point I really want to make is that you talk about your relationship with your doctor in the middle of your post. One thing you said, you really have to believe, and that is "it's my body and most of the time it lets me know what's working for me". You cannot feel like a pain in the ****, for you are your best advocate, and you can't let guilt cloud decision making. Most doctors really know they are not God, even though they give off that perfume at times. Do not feel guilty. Do what your research and BS receptors tell you is best for you.

Finally, I am pretty sure the cath was needed because of the three days post op swelling. You have been most helpful to me, because I was really not sure that my reaction to my pain was realistic, but it sure seemed bad---real bad.. Good luck moving forward, and I will look in regularly, or send me a PM....Bob

Trew

ob66 said:

guards---AUS
I will probably start from the last and answer. Right before my wife and I were to go a long planned cruise, my PSA rose from 0.05 to 0.07 10 months after daVinci surgery. My doctor recommended, and being a very pro-active sort, I agreed on having an AUS installed upon my return followed by the 37 treatments of RT. So I had vacation in April/May, the AUS installed on May 10, healing to mid June, the RT through the end of July or so, with some waiting time thereafter and activation in mid August. In addition I have been on lupron since last April and all my ultrasensitve PSAs have been less than 0.01. With a bit of prodding from Kongo, I did my reading, and have been a convert to a no dairy, no red meat, reduced sugar diet since September. My internist was shocked with my blood numbers (cholesterol, HDL, LDL,, etc.). My weight dropped back to normal, and I feel great.

One point I really want to make is that you talk about your relationship with your doctor in the middle of your post. One thing you said, you really have to believe, and that is "it's my body and most of the time it lets me know what's working for me". You cannot feel like a pain in the ****, for you are your best advocate, and you can't let guilt cloud decision making. Most doctors really know they are not God, even though they give off that perfume at times. Do not feel guilty. Do what your research and BS receptors tell you is best for you.

Finally, I am pretty sure the cath was needed because of the three days post op swelling. You have been most helpful to me, because I was really not sure that my reaction to my pain was realistic, but it sure seemed bad---real bad.. Good luck moving forward, and I will look in regularly, or send me a PM....Bob

Ok- I am reading and taking
Ok- I am reading and taking mental notes- the first few days after surgery- not so good. I don't understand why one doesn't get an extra day or two in the hospital- would be a lot easier than using the ER.

My clock is ticking down. I think the scarring in the urthrea is stablizing. I am having no problem with the cath- now down to every other day. I had an equipment malfunction today- what I call a pad failure. Wet through everything. got home with a wet backside- embrassing. I haave had more than enough of this stuff.

Go Guards!! OB- still appreciate your views on all this, too.

guards

Yahoo
I don't believe I'm cheering I just woke from a PM nap and it was great to get some real rest but even better, TA DA, I woke with wet underwear and my first wet pad .ya hoo I leaked LOL. So I am progressing as desired! what a relief this is now I can start cussing leaking again too, a week for any uncontroled flow. Glad your tracking trew this is kinda moment by moment and we can give the next bunch hope. If they control us then anything is possible! I really hate those catrastrophies when ya didnt even know they were coming. So damn humiliating. everyhing so far makes my doc look like a genius hope he is lol. My only concern for you is I hope they get the scar tissue under control you cannot shutdown after the insert because the caths ars a no no for sure. I know thats why I have the stint but the doc explained very carefully that once it was in there was no turning back it was an all or nothing gamble so this puppy had to work for me or I will be pissing my pants forever. hang in buddy the days are hustling by.

Trew

guards said:

Yahoo
I don't believe I'm cheering I just woke from a PM nap and it was great to get some real rest but even better, TA DA, I woke with wet underwear and my first wet pad .ya hoo I leaked LOL. So I am progressing as desired! what a relief this is now I can start cussing leaking again too, a week for any uncontroled flow. Glad your tracking trew this is kinda moment by moment and we can give the next bunch hope. If they control us then anything is possible! I really hate those catrastrophies when ya didnt even know they were coming. So damn humiliating. everyhing so far makes my doc look like a genius hope he is lol. My only concern for you is I hope they get the scar tissue under control you cannot shutdown after the insert because the caths ars a no no for sure. I know thats why I have the stint but the doc explained very carefully that once it was in there was no turning back it was an all or nothing gamble so this puppy had to work for me or I will be pissing my pants forever. hang in buddy the days are hustling by.

Guards, that is the big
Guards, that is the big issue with me- the scarring in the urthrea. My doc is in no hurry to proceed until she is absolutely certain the scar tissue isn't returning. I almost begged her in January to proceed with the surgery, but no, not until she sees me again in May will there be any decision about a date. It is interesting following your notes on all this. Now I know. I do not understand why a man doesn't get 2 or 3 days in the hospital with this surgery. My wife is not in the best condition and we are 80 miles from U of MI where I will have the surgery.

wonderful to hear you are leaking again!! Such strange joy we now have.

guards

Short update
Well its Sunday and Thought I would add my recent thoughts. Still having a lot of discomfort but nothing I can't live with. Advil seems to work pretty well. Think some of the pain is from strain to do other bodily functions not sure. Keep the faith trew we will overcome lol. Saw another post from a new 800 where he has some pain on turn on will follow that one closely, the suprise was it was 4 weeks or less since install, I will be nearly 7 weeks from install to activatation, wonder about the difference but not a time for me to push the issues. Our bike ppaths may be clear of snow by March 30 lol. And my brother-in-law already has a golf date reserved , wow 3 years and I will get to play golf again, I ought to really suck now lol. Well best of days to all I am looking at a half full glass again.

ob66

guards said:

Short update
Well its Sunday and Thought I would add my recent thoughts. Still having a lot of discomfort but nothing I can't live with. Advil seems to work pretty well. Think some of the pain is from strain to do other bodily functions not sure. Keep the faith trew we will overcome lol. Saw another post from a new 800 where he has some pain on turn on will follow that one closely, the suprise was it was 4 weeks or less since install, I will be nearly 7 weeks from install to activatation, wonder about the difference but not a time for me to push the issues. Our bike ppaths may be clear of snow by March 30 lol. And my brother-in-law already has a golf date reserved , wow 3 years and I will get to play golf again, I ought to really suck now lol. Well best of days to all I am looking at a half full glass again.

Update
Glad to hear things are going better guards. Taking advil is a far cry from where you were earlier. Hope things keep getting better with time. Golf is great, but I am not sure about cycling. I used to mtn. bike ride, but the seat and the tubing don't seem like they would be compatible over a long ride. Keep us posted, and continued success.

mrspjd

ob66 said:

Update
Glad to hear things are going better guards. Taking advil is a far cry from where you were earlier. Hope things keep getting better with time. Golf is great, but I am not sure about cycling. I used to mtn. bike ride, but the seat and the tubing don't seem like they would be compatible over a long ride. Keep us posted, and continued success.

bike saddles/seats
I remembered seeing a previous thread on the PCa forum about this subject. Don't know if it will be helpful or not, but here's the link anyway:

http://csn.cancer.org/node/200264

guards

ob66 said:

Update
Glad to hear things are going better guards. Taking advil is a far cry from where you were earlier. Hope things keep getting better with time. Golf is great, but I am not sure about cycling. I used to mtn. bike ride, but the seat and the tubing don't seem like they would be compatible over a long ride. Keep us posted, and continued success.

Bikes
OB I gave my mtn bike to my b-in-law. I now have a recumbent tadpole. I agree, no way i can ride a diamond frame, not worth the risk. Also have an ol puch mixte I rebuilt as a single speed its really a neat bike but it won't get ride'n either but I cant part with it so it sits in the garage lol. I tried some of the seats recommended before the 800 and in mho they didnt work. and I ain't takin no chances with damage. besides the tadpole is soooo much fun.

Trew

guards said:

Short update
Well its Sunday and Thought I would add my recent thoughts. Still having a lot of discomfort but nothing I can't live with. Advil seems to work pretty well. Think some of the pain is from strain to do other bodily functions not sure. Keep the faith trew we will overcome lol. Saw another post from a new 800 where he has some pain on turn on will follow that one closely, the suprise was it was 4 weeks or less since install, I will be nearly 7 weeks from install to activatation, wonder about the difference but not a time for me to push the issues. Our bike ppaths may be clear of snow by March 30 lol. And my brother-in-law already has a golf date reserved , wow 3 years and I will get to play golf again, I ought to really suck now lol. Well best of days to all I am looking at a half full glass again.

Guards- as always, i am very
Guards- as always, i am very much interested in your progress. I"m a bit envious- you will b eout doing things and the earliest i will get my 800 installed will be the end of May. but you have been waiting long then me, too.

My mind wanders along strange paths sometimes and I found myself asking the question, "What if the cancer returns, Trew? You are in a high risk catagory. What then?"

I think I would like to die dry. that is my answer to that. I wouldlike to have some period of being dry again before....... that is what I want. And if I live- all the more so, I want to be dry again and get my life back.

guards, soon you will be playing golf again. Exciting. And I will be out backpacking again with no fear. I can hardly wait.

guards

2 weeks
Well just a update to keep it in real time. The swelling must still be pretty heavy as I have little to no leakage still , fact is I often don't even run a pad for short periods as the only danger of leakage most of the time is coughing etc. I still have fair sized testicals and need to rest at night with a pillow between my legs as I sleep on my side. last couple of nights I have used some of the heavier pain killers just so I could get more than 1 hours rest at a time at night. The pain isn't that bad but its irritating enough I don't rest well at night. Some of it seems to be from the swelling rubbing the pad and causing irritation. Got some new baby wipes and they seem to help some. Again just keepin this running so perhaps we won't expect sudden miracles in healing. Want to go shopping with the wife today but I hesitate knowing the problems I had after taking the wife to lunch after doctors visit. So I will probably wait a few more days till I can walk more than waddle lol. Damn I wish they had spell check on these sites always was a math whiz but spelling and grammer were left to webster ,roget , and a good secretary lol.

Trew

guards said:

2 weeks
Well just a update to keep it in real time. The swelling must still be pretty heavy as I have little to no leakage still , fact is I often don't even run a pad for short periods as the only danger of leakage most of the time is coughing etc. I still have fair sized testicals and need to rest at night with a pillow between my legs as I sleep on my side. last couple of nights I have used some of the heavier pain killers just so I could get more than 1 hours rest at a time at night. The pain isn't that bad but its irritating enough I don't rest well at night. Some of it seems to be from the swelling rubbing the pad and causing irritation. Got some new baby wipes and they seem to help some. Again just keepin this running so perhaps we won't expect sudden miracles in healing. Want to go shopping with the wife today but I hesitate knowing the problems I had after taking the wife to lunch after doctors visit. So I will probably wait a few more days till I can walk more than waddle lol. Damn I wish they had spell check on these sites always was a math whiz but spelling and grammer were left to webster ,roget , and a good secretary lol.

I think we understand you
I think we understand you pretty well.

guards

Week 3
well I just moved into the third week and not a lot of change since last report. The discomfort is about the same and still very little leakage. Still if I try to do something like go to lunch with the wife I know I pushed when I get home. Should probably try some pain killer for that but I try to limit them and use them for rest at night , which has improved a bit. after my shower at night I now sit around on a towel with no pad for a while letting everything air a bit. I got some spray first aid stuff for cuts burns and chaffing and spray it on a couple a times a day. seems to have helped some. Btw I got some underwear from jockey over a year ago they are long legged and use some spandex in the cloth hols everthing in place well. liked them so well I now have 25 pair LOL. when I was doing 12-15 pads a day I often leaked around the pad. so lots of laundry for the wife. Sitting/lying down this evening for 6 hours so far no pad feels great! I still do not leak freely like before but will if I cough or drink enough. The swelling is down a bunch and the purple black is not nearly as bad. Can still feel tightness in the scrotum and would hate to try and energize it right now. I can now feel the tubes and the button on the device but can't feel the full shape yet. I'm resonably sure everything is fine but after 3 years of this crap I worry about every little thing. I hope I don't have to continue to strain to void but even that beats the leaking. I ordered my ID bracelet this week end and it will be here by the middle of the month. The damn thing is full LOL 3 heart stnts, diabetes , the URO stent, A titanium rod in my tibia , barely had room for it all LOL. Know there was something else bothering me and I will try to remember and add it later, thats why I am trying to keep this running as it occurs because we seem to forget the little details as we move on.

Roothead

guards said:

Week 3
well I just moved into the third week and not a lot of change since last report. The discomfort is about the same and still very little leakage. Still if I try to do something like go to lunch with the wife I know I pushed when I get home. Should probably try some pain killer for that but I try to limit them and use them for rest at night , which has improved a bit. after my shower at night I now sit around on a towel with no pad for a while letting everything air a bit. I got some spray first aid stuff for cuts burns and chaffing and spray it on a couple a times a day. seems to have helped some. Btw I got some underwear from jockey over a year ago they are long legged and use some spandex in the cloth hols everthing in place well. liked them so well I now have 25 pair LOL. when I was doing 12-15 pads a day I often leaked around the pad. so lots of laundry for the wife. Sitting/lying down this evening for 6 hours so far no pad feels great! I still do not leak freely like before but will if I cough or drink enough. The swelling is down a bunch and the purple black is not nearly as bad. Can still feel tightness in the scrotum and would hate to try and energize it right now. I can now feel the tubes and the button on the device but can't feel the full shape yet. I'm resonably sure everything is fine but after 3 years of this crap I worry about every little thing. I hope I don't have to continue to strain to void but even that beats the leaking. I ordered my ID bracelet this week end and it will be here by the middle of the month. The damn thing is full LOL 3 heart stnts, diabetes , the URO stent, A titanium rod in my tibia , barely had room for it all LOL. Know there was something else bothering me and I will try to remember and add it later, thats why I am trying to keep this running as it occurs because we seem to forget the little details as we move on.

I wanted to share this with someone...
I had a Radical Prostectomy on March 10, 2010 and have had severe incontinence since...until today, when my doctor activated my AUS 800. I have been totally dry for about 7 hours and not wearing a pad. I feel awesome. I have urinated twice with the device and although its a little difficult to manipulate right now it seems to be working like it should. I had one hitch with the activation. The control pad is flipped in my scrotum. The doctor wasn't sure how that happened and didn't put it in that way but the activation button is on the bottom and the part you squeeze is on the top with the tubes beside the control pad. It is very high up in my scrotum, thus a little difficult to grab the right spot, but I've done so twice. It can be corrected with another small incision as an outpatient but we are going to see if I can handle it the way it is for the time being. I would like to know if anyone else has had this problem.

I just found this survivors website a few days ago and have read many of the posts and have been very encouraged by the comments. Thank you all for sharing such personal information and I hope to be able to contribute in the future.

guards

Roothead said:

I wanted to share this with someone...
I had a Radical Prostectomy on March 10, 2010 and have had severe incontinence since...until today, when my doctor activated my AUS 800. I have been totally dry for about 7 hours and not wearing a pad. I feel awesome. I have urinated twice with the device and although its a little difficult to manipulate right now it seems to be working like it should. I had one hitch with the activation. The control pad is flipped in my scrotum. The doctor wasn't sure how that happened and didn't put it in that way but the activation button is on the bottom and the part you squeeze is on the top with the tubes beside the control pad. It is very high up in my scrotum, thus a little difficult to grab the right spot, but I've done so twice. It can be corrected with another small incision as an outpatient but we are going to see if I can handle it the way it is for the time being. I would like to know if anyone else has had this problem.

I just found this survivors website a few days ago and have read many of the posts and have been very encouraged by the comments. Thank you all for sharing such personal information and I hope to be able to contribute in the future.

Welcome
Hi Root and welcome to a great site with great people. You will find a bunch willing to share there experiences here. Can I ask about your leakage before it was turned on. As you can see its starting to worry me quit a bit as I haven't even been wearing pads for the last few days and only leak when I cough or strain and I was using 12-15 pads a day before surgery. I got the double cuff and I am pretty certain when its turned on I will stop, my concern is damage to the uretha due to pressure. I know I've become an ol lady about this but 3 years wet is a long time.