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AUS Update

Trew
Posts: 891
Joined: Jan 2010

I had an appointment at the U of MI this morning and Dr. Latini is going forward with surgery. I should get a date tomorrow. The recall on the AUS was lifted last week. The time was perfect.

Dr. Latini cautioned me that many men even after getting an AUS installed still have to wear a pad or two a day.

Finally!!

mattmans5
Posts: 70
Joined: Jan 2011

Hope all goes well

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

Three cheers for the good guys! Way to go, Trew. Keep on trucking!

Trew
Posts: 891
Joined: Jan 2010

Details will come in the mail.

I finally have a date.

mrspjd
Posts: 688
Joined: Apr 2010

Wishing you smooth sailing from here on out, with the wind always at your back. Be well.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Wishing you the best Trew!

lewvino

guards
Posts: 72
Joined: Aug 2010

Damn I thought your appt. was today so I waited to visit Great news best wishes and prayers my friend. Hope yours works as well as mine only times I leak is when I cough
and then its just a spot on my shorts. I don't even wear one of the light pads now its like GREAT LOL. I hope your post surgery is a little better than mine was but even if it aint its worth the discomfort to be free again. keep us posted.

Trew
Posts: 891
Joined: Jan 2010

I remembered some of your difficulties. I asked Dr. Latini some interesting questions in the examine room yesterday, like, have any of your patients had to go to the ER to be catherized after getting home? She said not to her knowledge. I think Dr. Latini has a very gentle touch. I suppose she handles the scoping as well as it can be done. And I have never had a doctor seem as interested in me as she is. I am impressed with Dr. Latini, very much.

so now it is just waiting for August 5 to get here. I am so excited in a convoluted way. I sure can't explain it. I just know I am moving further away from the old normal, but then, maybe not.

Oh, I asked Dr. Latini about the AUS that plays "don't worry, be happy" when the flow button is pushed. She found that amusing, but, no, that model is not available.

and WOOHOOOOO it is!

VascodaGama's picture
VascodaGama
Posts: 1526
Joined: Nov 2010

Trew
I think that her interest in you is that of a “patient under the knife”.
Hope all goes smooth on a ”.. gentle touch..” as you wish to dream of.

Wishing you a successful surgery.
VG

JR1949
Posts: 230
Joined: Jun 2009

Good luck, my friend. I hope all goes well for you. I know you have been waiting for the AUS for a long time. I wish you smooth sailing.

JR1949

Trew
Posts: 891
Joined: Jan 2010

I'm talking bladder and urethra here. I have seen the inside of mine more that I really wanted to. I was told at me last appointment I will be scoped a few more times, too. I have been spot bleeding, more or less, off and on since radiation. the inside of my bladder is clean, but it has little blotchy patches on the tissue that at are, well, to me they look like tiny abrasions. Dr. Latini is not concerned right now. radiation makes a change in the tissue.

I am two weeks from surgery.

Oh, I was wondering, if you have had radiation, what does the inside of your bladder look like?

I need to get my medical alert ID ordered. We did cover that at the last visit, too.

Joeg
Posts: 13
Joined: Feb 2011

I wish you the very best and look forward to the posts on your progress.

I got the call last week that the recall had been lifted and my AUS surgery is scheduled for Aug. 1 at Memorial Sloan Kettering in NYC. I am really looking forward to getting back to a dry active life at age 55. I was scheduled for AUS surgery on May 23 but I have been on hold since the recall.

I had LARP surgery June 29, 2009. Radiation, hormone therapy and a male sling in 2010.
My incontinence actually got worse after the sling.

We will be able to share our operative experiences and progression of our healing over the next couple of months.

I go for pre-op testing and meet with the surgeon to sign consents on Tues, July 26. I guess I will need to get my medical alert ID ordered, too. Just can't wait to be dry again.

Trew
Posts: 891
Joined: Jan 2010

This will be interesting comparing notes. My surgery will be 4 days after yours, so no scary stories until after the 5th, ok. No way I am backing out of this. I have had enough incontinence. I just hope and pray I am one of those who aftr surgury is absolutely dry. time will tell.

My pre-op is this coming wed, day after yours. I am so excited!!

And Joeg, I hope all goes well with your surgery, too. I know we are both hoping for the same outcome. Courage, my friend. this will pass, too.

Joeg
Posts: 13
Joined: Feb 2011

Trew,
I wanted to wish you well tomorrow.
I had my surgery on Monday and spent one night in the hospital. Had a catheter in over night and it was removed before I came home yesterday. I have some pain but haven't had to take a pain pill since I left the hospital yesterday morning. I am taking it very easy, of course. I am on antibiotics for 2 weeks and will see the Dr. on Aug 16. Activation Day is Sept 6th which can't come soon enough.
Keep the wind at your back and give us an update on how you are doing.

Trew
Posts: 891
Joined: Jan 2010

sounds like surgery went ok for you. maybe it's not as bad as i imagined. I am waiting for a call back from the OR scheduling nurse for a surgery time tomorrow. I am just in that waiting mode right now. And waiting.

I will be delighted to see these next 6 weeks come and go. I can hardly wait.
All week every time I have wet pad to change I say "Yes!!" positive affirmation I am making the right decision. This is no time to go dry now.

So how are you feeling today? How is the swelling?

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Trew....We are all wishing you the best in your surgery tomorrow! Keep us posted on your progress as I'm sure you will.

Here's to DRY DAYS AHEAD FOR TREW!!!!

lewvino

Joeg
Posts: 13
Joined: Feb 2011

Trew,
I am still doing well. Swelling seems to be better today and certainly not as bad as the sling surgery. It has been wonderful not to drip since they took the catheter out on Tuesday. The Dr. said that the drip will return, though.
I hope you are all set for tomorrow. Please let us know how you are doing. All the best to you. Dry days are coming for us and it can't come soon enough.

JR1949
Posts: 230
Joined: Jun 2009

Trew, If my understanding is correct you are in the hospital now post op.
I wish you the best and dry days ahead. You truly deserve the AUS after all the anquish you have gone through to get to where you are today.

You are in my thoughts and I wish you the wind at your back.

jr1949

Trew
Posts: 891
Joined: Jan 2010

Saturday afternoon, after a 23 hr layover at the U of MI I can now report I am tender, somewhat swollen, the drip has been slowed to a standstill, and I have a brand new AUS 800 parked inside me waiting to be activated in 6 more weeks. I understand the dripping will return in a few days as swelling goes down, but for I am just enjoying no dripping and the body part.

Dr. Latini had 4 AUS patients Friday- i was first up on her schedule. This morning I was in the overnite holding tank next to one of other 3. A very nice guy. We both agreed we could not find a personable doctor than Dr. Latini. We both agreed what is a very awkward situtation for any man to be in, she had a very calming way in her approach that was very reassuring and comforting.

her report to my wife after surgery was that everything went perfectly. I expected to expereince more pain than I have, and more swelling. Dr. Latini told me this morning the swelling would come, I probably wouldn't be disappointed. But this the good news: The AUS is now installed. Finally. I feel drugged, tired, sore, but I have an optimystic hope I have not had since that first uro in Lansing killed it. I compare that first doctor in Lanising and Dr. Latini and I think they come from different planets.

If I tell you I'm sitting on a donut typing this- do you know what I mean? :)

Everyone who has been sharing your expeeinces with me and your encouragement and support- THANK-YOU VERY MUCH.

Joeg
Posts: 13
Joined: Feb 2011

Trew,
So good to hear from you. Glad you are doing well.
I am still doing good. I was out of bed all day today. Mowed the grass on a riding tractor, waxed a couple of panels on my truck and still not dripping. What a wonderful feeling! I am sure the dripping will start again, at some point, but I am enjoying every moment in this state. I know we both are praying that in 6 weeks or less we will not have to worry about this problem again.
I can relate to the donut. -:) I used one when I had the Advance sling but I have not needed to use it for the AUS surgery.
Take it very easy and keep us updated on how you are doing.

Trew
Posts: 891
Joined: Jan 2010

My doctor gave me a long list of no-nos. Riding lawn mower is on the no-no list. so is all lifting over 6 lbs, restricted ways to sit, no driving a car for 4 weeks, absolutely no bike, horse or rail? riding for 6 months.

Interesting isn't it? I am sore, tired, on pain meds, of course, but the pain is on the low end right now. urethra is definitly feeling the pressure from swollen tissue.

I have to locate the button and gently tug it downwards 2xs a day to keep it in place.

I had a very difficult intubation- three docs came and talked to my wife after surgery. I am one rare bird it seems- i have no epigolttis in my throat. The doc in charge of the anethesaisa sp? said he would never forget me. if I ever had surgery again at U of MI I am suppose to request him my name.

Enough for now.

guards
Posts: 72
Joined: Aug 2010

Its really suprising the difference in doctor's . Joel had a catheter for the first night and will be activated in just 4 weeks. You apparently had none same as I. It sure woulda been nice in my case. You will wait 6 weeks same as I did. If you don't get any blockage the rest is easy , That was my only problem the rest was minor discomfort so sounds like it all down hill now bud. Glad you were able to finally get here !

Trew
Posts: 891
Joined: Jan 2010

Nice bliss. Funny how a guy can come to enjoy having a cath in for a week or a day. anything away from the leaking.

I have to wait a full 6 weeks to get activiated. I am also on a long list of restrictions as noted in my response above.

Right now the tissue is swelling and the urine flow with a push is a trickle. And I am an interesting shade of purple. Or some color close to purple.

Joeg
Posts: 13
Joined: Feb 2011

Trew,
Hope the side effects of surgery are getting better for you. I was expecting some shade of purple and I am totally amazed that the swelling and bruising are starting to subside. The Advance sling surgery was much more tramatic and painful.
I am still not dripping and loving every moment of being dry. I expect the drip is going to return as recovery continues. The first few days I did have to push to get a stream the size of a pencil lead to come out. It is getting easier to go.
I go back to the Dr. at MSKCC next Tues. 8/16 for a checkup and I continue with the antibiotics 4 times a day.
All the best.

Trew
Posts: 891
Joined: Jan 2010

Joeg, glad to hear of your forward progress. sounds similar to mine

I am on the antibiotics 4x a day, too. the sctoum is very sensitive to the touch. I locate the control button and gently nudge it downwards as instructed, but it is not comfortable doing that. However, I am doing much better today- day 3. Strange color is changing back towards a more normal color and the swelling is actually starting to go down a bit.

I had two incisions: one on the bottom and one on the lower abdoman that is tender when I cough or move in our out of bed, etc. I feel a great sense of relief with the surgery now behind me. the decision is made.

WolverineToo
Posts: 1
Joined: Aug 2011

Trew (Joeg too)

I'm new to this forum but not new to the RP post op incontinence problems. My surgery was almost 10 years ago now and I am truly thankful I am cancer free so far. But I am growing weary of the pads and getting really wet sometimes just getting out of the car. I also get up 5 or 6 times a night and I have for years. I gather I have both stress incontinence and an over active bladder. Neither 4 different kinds of prescriptions or collagen shots helped at all. So here I am trying to decide just what to do. Incidently I have Dr. Latini too and I think she is a doll; no one could be nicer and she was highly recommended to me by a doctor I trust. I'm glad to hear you concur.

Please let me know why you went the AUS route and how you are doing. I'll pray you recover quickly and get great results too.

VascodaGama's picture
VascodaGama
Posts: 1526
Joined: Nov 2010

Trew
It is great reading your post and seeing it all functioning perfectly. I wonder if the “switch” can be remote-operated. You would need an encrypted code.
(Just joking)

Wishing you a continuous good outcome.
VG

Trew
Posts: 891
Joined: Jan 2010

it would be very nice, indeed if there was one similar to something you use to open a car. Just touch the button and go. How nice.

Trew
Posts: 891
Joined: Jan 2010

I have been reading every post that is posted on the sling and AUS (AMS 800) and the AUS to me appeared to be the only choice. Incontinence is a lifestyle changer. I think it could drive a guy to suicide eventually. So staying wet was no option. How to stop the leaking? The only answer that realy semmed viable to me was getting the AUS installed.

And yes, Dr. Latini at the U of MI has a very reassuring manner about her. I felt very confident going into this surgery with her doing it. I have not met a doctor I have felt so comfortable with as her.

This is day 5 for me. the control button is right at the bottom of the scrotum where it should be. I do do the gentle tugs twice a day- maybe 3x but right now my scrotum is very sensitive to touch and the botton is exactly where I think it is suppose to be so the tugs are very very very lightly done right now. Anyone have any feedback on that? As the swelling goes down the tugging should become easier. I can hardly imagine what it would be like to have to actually push the button in to go right now. OUCH!!

I was actually surprised how easy this surgery has gone. I stopped pain meds on the 2nd day out. I am just taking the antibiotics and stool softener now. I am so releived this all behind me. Sitting is a challenge. I was given a "donut' at the hospitl. It sprung a leak the 3rd day. So I sent the wife out to fine a small float tube. she found 5 at a dollar store for $1.12 each. They are working just great! One popped, but I have 4 left.

Wolverine- i hope this answers a few of your questions.

I

Joeg
Posts: 13
Joined: Feb 2011

WolverineToo,
I am sure you are growing very weary of your incontinence after 10 years. You are much more patient than me. I am a little more than 2 years since RP surgery and incontinence has controlled my life since then.
I think your Dr. will recommend the Advance sling or the AUS based on your urodynamics study and cystoscopy. Dr. Latini is well respected and I am sure she will provide you will sound advice on what approach you should take.
Unfortunately for me, a Dr. thought the sling would fix me so I tried that first but my incontinence only got worse after the sling was implanted in Dec. 2010. I seem to always fall on the wrong side of the percentages. I am 15 days out from the AUS surgery and I am hoping and praying that I will finally be dry. Hind sight is 20/20 but if I had it to do all over again, I would skip the sling. I had more post-op issues with the sling than I have had with the AUS.
I wish you the best as you go through the decision process. Keep us updated on how you are doing.

Joeg
Posts: 13
Joined: Feb 2011

WolverineToo,
I am sure you are growing very weary of your incontinence after 10 years. You are much more patient than me. I am a little more than 2 years since RP surgery and incontinence has controlled my life since then.
I think your Dr. will recommend the Advance sling or the AUS based on your urodynamics study and cystoscopy. Dr. Latini is well respected and I am sure she will provide you will sound advice on what approach you should take.
Unfortunately for me, a Dr. thought the sling would fix me so I tried that first but my incontinence only got worse after the sling was implanted in Dec. 2010. I seem to always fall on the wrong side of the percentages. I am 15 days out from the AUS surgery and I am hoping and praying that I will finally be dry. Hind sight is 20/20 but if I had it to do all over again, I would skip the sling. I had more post-op issues with the sling than I have had with the AUS.
I wish you the best as you go through the decision process. Keep us updated on how you are doing.

Trew
Posts: 891
Joined: Jan 2010

Incisions are tender- not bad. This morning I am wearing NO pad. Still enough swelling I guess to keep the drip from happening- but right now I am almost dry. amazing. So nice not to wear a pad. And still almost 5 weeks from getting the AMS 800 activated.

Healing is going well.

Joeg
Posts: 13
Joined: Feb 2011

I had my 2 week post-op checkup today at MSKCC in NYC. Dr. said I am healing very well and he will see me on Sept 6 for activation, as planned. The 2 weeks of antibiotics are finished and I am still not dripping. The swelling continues to go down. I have no complaints. This recovery period has been uneventful and I am very thankful.
Trew, hope you are doing great, too.

Trew
Posts: 891
Joined: Jan 2010

I'm not dripping at all, either. I slept with no pad last night and was dry this morning. One pad change all day today. It is like bliss!

I went for a walk yesterday and for got to put a pad in and was wet then I got home after 20 min walk- wet, but not soaked. I am back to U of MI on Monday for post-op check up. the "on" button seems to be staying at the bottom of my sack. so far, all is well.

Tortola
Posts: 2
Joined: Aug 2011

Until you guys who are in waiting for the AUS or waiting for the button to be pushed should look into this device. No pads during the day and you are dry.

I started leaking after a Turp and have tried everything posted on the web and this works! I am in the early stages of evaluation at Duke for either the Sling or the AMS 800 and from what I'm seeing the AUS is the way to go.

Joeg
Posts: 13
Joined: Feb 2011

I used the Afex system from Arcus Medical for most of my 2+ years of incontinence. I leaked more than pads could hold and I had to find a way to become active with the constant drip that plaqued me since the catheter was removed after RP. The Afex system was the best alternative for me. I did have some issues with the bags leaking but Arcus Medical always replaced the defective bags without a problem. I had to pay out of pocket since I am not old enough for Medicare but it was worth it.
I had my sling surgery at Duke and it completely failed and it made my incontinence worse. Make sure you ask lots of questions when you go for your evaluation and make sure the "expert" is doing the surgery and not one of the 'fellows'. I have a copy of the operative report and I cannot tell who actually did the placement of the sling. All I know is that it failed. After the sling surgery, I was out of the hospital in less than 2 hours and had to remove the catheter myself 3 days after the surgery.
Almost nine months after the sling surgery, I am 3 weeks out from AUS surgery and I feel like a million dollars. I spent one night in the hospital and the catheter was removed before I left. I have leaked a few drops since surgery. I am wearing a panti liner just because I am anticipating the drip will start at some point before activation on Sept 6. Hopefully not, and I am only 2 weeks from the big day!!
Best of luck to you and let us know how the evaluation is going and what you decide to do.

Tortola
Posts: 2
Joined: Aug 2011

I know there is a 4-6 week wait after surgery before activation and my question is what is the stay in the hospital and what post-op visits are there. I live in Western NC and it is a four + hour drive to Duke and I wonder if driving or riding in a car is possible for the first few visits.

Joeg
Posts: 13
Joined: Feb 2011

I spent one night in the hospital but Duke may different. I thought they did the AUS surgery and send you home the same day.
I had to go back to see the Dr. in NYC after 2 weeks and the next visit is on activation day. I am sure I will need to go back for follow up after activation but I am not sure of that schedule.
You may want to call the doctors office to get the scoop.

Trew
Posts: 891
Joined: Jan 2010

3 weeks today. I am still too tender in the scrotum to be pushing any button yet but I am seeing daily progres now in decreased swelling. I have started feeling the entire device now under the skin. Still 3 weesk to go before activation for me.

I am 90 miles from the U of MI where I had my surgery. The 2 week post-op visit wasn't that difficult. I drove myself there and back and even stopped off at an REI store and did a little shopping in Ann Arbor and tried on a couple of pair of pants.

I have read so much about sling failures on-line I wanted nothing to do with them. Dr Latini suggested that possiblity at one time but I rejected it outright- I wanted nothing to do with a sling.

I did get the hospital statment from the U of MI hospital today. Total: $42,200. Trying to read all the medical stuff that was on the two itemized pages I think the AMS800 cost about $27,000. I would be interested in knowing what others have been charged.

The cost of radiaton was like $50,000+ and the de vinci surgery wasn't cheap, either. Hormone shots- two of them- where like $1,500 each, plus scoped I think about 8 x at something like $1,200 each, plus one OR procedure to remove scare tissue in the urethrea- like around $10,000 and a procedure to remove scare tissue in a uro's office that was a few thousand. this hasn't been cheap.

Hondo's picture
Hondo
Posts: 5717
Joined: Apr 2009

Just coming over from H&N to check up on you, glad to see it all went well and you are doing as well as possible.

Take care my friend
Hondo

Joeg
Posts: 13
Joined: Feb 2011

Expect an update tomorrow night after I return from NYC for Activation. Leaking has increased over the last week but still not as bad before the surgery. It has been a long journey as most of you have experienced as well.
Happy Labor Day! Here's to dry days ahead.

Joeg
Posts: 13
Joined: Feb 2011

The activation process was very quick and painless. I am dry with no dripping or leaking and it is not difficult to use. I could not be happier, at this point. Can't go back to the days before Prostate Cancer so it is time to get moving and not worry about what is behind me.
Trew, the best of luck to you next week when you get activated.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Joey,
Congrats on this new milestone! Wishing you many more dry days.

lewvino

Trew
Posts: 891
Joined: Jan 2010

I can feel your relief!!!

I have just over a week to go before activation- Sept 19 for me.

I can hardly wait. I have been wanting to call the doc's office and tell her I think I am ready now- let me come early- but her schedule is always full so i will impatiently wait-what's another week?

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