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AMS 800 and Virtue Sling Journey

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Posted 8/25/2010 5:11 PM (GMT 0)
tallguy,

Today's the day. Good Luck!!!!

Wigs
Posted 8/26/2010 1:03 AM (GMT 0)
Wiggs and all,

Today was the day 6 1/2 weeks after my surgery for my AMS 800 artificial urinary sphincter (AUS) activation. Here is the story:

Got to the clinic a few minutes late for my 3:30 pm appointment. My wife and I were about 20 miles away getting my CCW concealed carry permit and the road was under repair with our TARP funds at work. But I digress......I drove like a banshee because the last thing I wanted to do was miss this appointment. But, I digress......

HERE IS WHAT HAPPENED:

After the usual questionaire asking how I felt about my incontinence and ED....I can fill this thing out blind folded at this point we were ushered into the room for the mandatory urine sample and BP check. My wonderful Doctor came in with an intern in tow and said "drop em'". I layed back on the table and the raised it up to working height and went to work. She "milked" the AUS "bulb" (this is the working part, looks/feels like a half size domino about twice as thick). To activate they push on the sides at the very top to activate the sterile solution that fills the "cuff" that surrounds the urethera. This closes off the urethera. After a few minutes of "fore play" she asked me to take my thumb and fore finger and press/push on the lower portion of the flat side of the "bulb"....hard. This forces the liquid solution from the "cuff" and opens the urethera. They then had me stand and pee into a cup. Out came a small amount (remember, I had just gave a urine sample a few minutes before). Then asked me to see if I could push out any more.... a couple of drops came out. We waited a minute or so and I tried again and .....nothing came out. Evidently how long it takes for the "cuff" go move back into place and seal off the urethera varies with each patient. I had read the book/manual they gave me at the prior visit so I had a good feel how to activate etc.

We then left the office at about 3:30pm. We got home about 4:00pm. We passed my golf club on the way. So, I immediately said to my wife, I am going to play 9 holes and give this thing a workout. She said....fine but do you realize in our excitement for your new toy we forgot to pick up my car at your office?....Opps, we can so that tomorrow morning, I have to play some golf.

HERE IS WHAT YOU REALLY WANT TO KNOW...JUST TEASING WITH THE STUFF ABOVE.

ON THE WAY HOME FROM THE CLINIC I LEFT THE PAD IN MY BRIEFS THAT I WORE ON THE WAY THERE. WHEN WE GOT HOME I CHANGED FROM MY OFFICE SUIT INTO GOLF SHORTS AND THREW THE PAD ACROSS THE BATHROOM......(IT HAD A FEW DROPS IN IT WHICH GOT THERE BEFORE WE ACTIVATED THE AUS)...NEVER TO BE SEEN AGAIN...HOPEFULLY. TOOK MY 48 CHEVY TO THE GOLF COURSE SINCE MY WIFE JUST HAD TO GO TO THE STORE. WALKED 9 HOLES AND DRANK A COKE ON THE WAY. SWUNG FULL OUT WITH ALL THE CLUBS IN THE BAG. I FINISHED about 6:30PM about THREE HOURS SINCE THE CLINIC VISIT AND SINCE URINATING AND ACTIVATION OF THE AUS. I WAS FEELING THE "URGE" SO I STOPPED IN THE MENS LOCKER ROOM BEFORE GOING HOME. DROPPED THE GOLF SHORTS AND BRIEFS. PUSHED ON THE "BULB" AND WELLA....OUT CAME A GUSH. NOT A LARGE VOLUME BUT MY BLADDER HAS SHRUNK OVER THESE TWO YEARS OF MY JOURNEY SINCE RP. DOC SAYS IT WILL GRADUALLY STREATCH AND I SHOULD BE ABLE TO HOLD MORE AS TIME GOES ON.

THE QUESTION YOU REALLY HAVE IS DID I LEAK. I FELT MY BRIEFS AND THERE WAS A VERY SLIGHT DAMPNESS. SOME OF THIS WAS PROBABLY A FEW DROPS WHEN I UNLOADED ONE OF THOSE 250 YARD DRIVES .....FIRST GOLF SINCE MY AUS SURGERY 7 WEEKS AGO.... AND THE REST OF THE DAMPNESS WAS LIKELY PERSPIRATION. IT'S NOW ALMOST 9:OO PM AND I AM HOME AND DRY, HAVE NOT CHANGED UNDERWEAR ALL DAY AND AM JUST NOW FEELING A SLIGHT URGE TO PEE. WOW DOES IT FEEL GOOD TO NOT HAVE A PAD LUMPED IN THERE.

BOTTOM LINE IS THAT THE VENERABLE AMS 800 ARTIFICIAL URINARY SPHINCTER SEEMS TO BE DOING IT'S JOB. I HAV SNEEZED about FOUR OR FIVE TIMES (BIG ONES) WHILE SITTING HERE WRITING THIS. THERE MAY BE A SMALL DROP OR TWO THAT CAME OUT BUT NO MORE...STILL DRY. ALSO HAD TWO CROWN ROYAL ON THE ROCKS BEFORE DINNER..........GUYS, I AM GETTING MY LIFE BACK.

THREE CHEERS FOR THE AUS AND ALL OF YOU THAT HAVE HELPED ME THROUGH THIS. I WILL POST MORE UPDATES WHEN THERE IS ANYTHING WORTHY TO REPORT OTHERWISE YOU CAN ASSUME ALL IS WELL. BUT, I INTEND TO STAY HERE AND SHARE WHAT I CAN AND REPLY TO ANY AND ALL QUESTIONS THAT COME MY WAY.

ALSO I MAY START A NEW THREAD WITH THIS SAME POST JUST TO MAKE IT MORE VISIBLE TO THOSE WANTING THE "SHORT STORY".

Posted 8/26/2010 1:16 AM (GMT 0)
Tallguy, let me be the first to congratulate you. That is wonderful news. Your account of today was spellbinding and great. I hope it continues to get "gooder and gooder" for you.

David in SC
Posted 8/26/2010 1:23 AM (GMT 0)
Thanks David! And I am wishing and praying that your upcoming surgery gets you your life back as well!
Carl in MI
Posted 8/26/2010 2:49 AM (GMT 0)
thank you, there is so much i have missed out in the past year, just want to be able to enjoy a few things again in my life, sick of being a patient
Posted 8/27/2010 2:42 AM (GMT 0)
Boy, what a great feeling, urge to pee, I haven't had a single urge for the last seven month while I am up on my feet. I will re-read your story serveral times because it sounds so good. Congratualtions and thank you for sharing. I'll give it a whole year and if I am still 100% incontinent I then I will surely be looking at having a cuff installed.
Posted 8/27/2010 5:24 PM (GMT 0)
knotreel,

I hope my story/journey helps. I am now in my third day after activation and doing fine. Have a few things to learn about operating and managing my new toy but so far it looks good. I just posted some questions to other AUS users.

I wish you the best and hope you don't need to go this route. But, if you do it is great to know that a good solution is always there.

Posted 8/27/2010 10:08 PM (GMT 0)
great news carl. keep us informed. I am  still on fence but leaning your way.
Posted 8/30/2010 11:43 PM (GMT 0)
Here is a 5 day post activation update with my new AUS toy.

Things have really settled down in to a very improved quality of life.

Over the weekend I played golf, cut some trees and did some pretty physical stuff. No leakage of any significance. As advised by some other AUS users on the forum I still wear a very light ladies panty liner (OK save the girly man jokes) but only a few drops seem to get through and I think these are a few risidual drops after I urinate....not leaking around the cuff.

I am still using a two handed technique to activate/push the bulb. One hand finds things a little "slippery". Some tell me that eventually the AUS will heal more into place with less slippage.

What a difference to be pad free. It is so much more comfortable "down there" with no pad to irritate things. Makes my "package" look smaller but I will take that trade off.

 Taking a trip for a few days so will see how I do traveling by plane. Should be back to normal.

Posted 9/19/2010 7:25 PM (GMT 0)
Four Week Update post activation of my AMS 800 AUS.

The AUS functions as intended and my life is pretty much back to normal. Basically I am DRY as defined by most ot the others that have posted about their AUS experience.

I wear a light panty liner just to catch a few residual drops when I don't wait long enough for the AUS to close. I have played golf a few times and leak a little more with the stress of swinging but one light pad will take me a full 18 holes. I wear nothing at night. Stil get up 2-4 times because that just seems the routine my bladder is used to. If I don't do my nightly cocktail and limit fluids I don't have to get up as much.

If I am doing normal things and wait about a minute after urinating I remain dry no more leakage that before my RP surgery.

The AUS just takes a little practice to activate but it is becoming second nature to operate. It takes two hands to do it right. One to hold the bulb and one to squeeze the bulb. This makes aiming a little tricky. I just have to get used to going in a stall since I have to drop the pants and take the entire package out. I can do this without taking off the underware (pulling the package out of the side) but if I don't stand up real close to the toilet or urinal with my dropped pants out of the way I may spill some drops on the clothes. It's just easier for me to go this way.

Most all soreness is gone but I still have a little numbness that gets gradually less each day/week.

For anyone worrying about doing an AUS I say don't worry at all. It simply works. If a sling only gets you down to a pad or two a day you are still not dry by any means. This is a much better and more predictable solution for someone that was a heavy leaker like me.

Posted 9/27/2010 4:28 PM (GMT 0)
Tallguy

I am thinking about either slink (Cleveland Clinic) or Aus 800.   Evaluation hasn't been done so don/t know which way I will end up with.

Right now just had a Holman Laser Scar tissue reduction so peeing ling a fountain with little control unless in prone position.

Until that opened up, it wasn't terribly bad but having sphinter completely closed sucked so had to have something done.

How is the journey doing with the Aus so far?

thanks Tom

Posted 9/27/2010 10:45 PM (GMT 0)
AUS AMS 800 journey going fine. about as close to totally dry as you can get. I am now five weeks after activation of my AUS. Life is normal. I still wear a very light womens panty liner to catch residual drips that happen after urinating. If I waited a bit longer I don't think there would be any leakage at all. It takes a minute or two for the sphincter to close after activating. I still have a little swelling in the scrotum and a slight numbness (numb nuts). This seems to get a little less each week.

All in all I am happy with the result. If you consider a sling be sure you might be satisfied with only getting down to a pad or two per day. Seems like this is what most guys experience. After having both the sling and the AUS I lean very much toward the AUS because it is an almost certain fix that gets you off those heavy pads completely.

Let me know if you have specific questions and good luck with your recovery.

Posted 10/19/2010 12:31 AM (GMT 0)
I am now 8 weeks post AUS AMS800 activation. There is really not much new to report that is different than my last update. I have now pretty well settled in to a normal routine with the AUS. I do think my bladder is finally stretching a bit so I don't get the urge to go as often and don't get up at night as often.

I do find that I always go into a stall to urinate when in a public place. I have to pretty much drop the pants to the ankles and stand very close to the toilet unless I sit down like the europeeeeeeen :-)  guys do. If not I will tend to dribble on the clothes unless I lean forward a lot. I also need to be careful to aim correctly. It takes me two hands, one to hold the AUS bulb and one squeeze it to activate. This leaves a couple of fingers to steady willie so he does not aim the wrong way. Anyone else with an AUS that has discovered a better technique?

I am also posting this to bump it up front so a friend I recommended to the site will see it. He just discovered that he has advanced prostate cancer (gleason 8) and is struggling with all the typical decisions. If he joins the site I hope all the brothers here will welcome him with the same great advice you have given me.

Regards and well wishes to the brotherhood!

Posted 10/19/2010 1:06 PM (GMT 0)
Tallguy, thanks for the re-post. I re-read your journey and got me excited about gettting my implant.  I haven't scheduled the date yet but Jan looks about right. My Dr. didn't predict the result but if mine is anything like yours I will be suprised and really happy.
Posted 10/20/2010 12:01 AM (GMT 0)
Knotrell,

Good luck, I hope the AUS helps you like it did me. Are you aware that some docs put in tow cuffs if they feel the need for extra hold/control. Also, I asked mine about doing the IPP at the same time. She said that she does not recomment doing both at the same time. She said there is just too much surgery involved and it is better to do the IPP after the AUS has healed. Just one opinion since there seems to be some docs that like doing both at the same time and some guys on healing well have done this.

Posted 10/20/2010 1:41 PM (GMT 0)
I have heard others discuss the two bands and since I am leaking so bad and I have a short sphincter I asked about the two cuff setup. Dr. said he doesn't like to start off with two. Save a bullet. Getting the IPP added into the op is a customer request, more than I dislike the idea of either of the implants, I dislike the the idea of two operations. He didn't offer any negatives on the subject, I would guess there might be increased risk for infection? I am seeing the  potential "IPP" Dr next wedensday to see what course of action I need to take on the ED. It would be nice to wake up one day and have the dripping limp willie not so limp and sorta dry. I think the " IPP" Dr. will try injections at this visit? I have a 4 hour drive the Houston where all this will happen and hope I won't have to make too many trips to set a course. I again have to say, again,  that your story(s) have helped me to get rolling on regaining more of my former life.

Ron

Posted 1/15/2011 10:08 AM (GMT 0)
tallguy

I picked up your thread from the thread i started a few days ago.

https://www.healingwell.com/community/default.aspx?f=35&p=1&m=1999904#m2001063

I'm new to forums so have to get used to moving from one thread to another.

I am encouraged by your story and well done on eventually acheiving a successful activation.

Did you or anyone else have a chance to read my horror story in the medical section of my Roayl Air Force 74 Squadron website?
http://www.74squadron.org.uk/medical_matters.htm      Chapter 8

My situation is very complicated really and in some respects very unique.

I had RT 9 years ago which was fine for about 2 years but the PSA started to rise so went on to Casadex HT.

Realising that this would not last for ever I looked for an alternative,and found HIFU.

The first blast appeared to work,but then relapsed,so a second and then third attempt was made.This had not been done anywhere in the world before as a salvage procedure,ans sadly resulted in a catastrophic Uro/ Rectal fistula with waste matter coming through the penis and urine from the back passage.

I really wanted to die to be honest,but I underwent very complicated and radical surgery to fix the fistula but this has resulted in a stricture.

A suprapubic 20CH catheter has been in place for nearly 2 years now but keep blocking and becoming infected.I had sepsis twice last year and nearly passed away,but my RAF spirit kicked in and I press on day by day.

It is proposed to try to fix the stricture followed by the AUS implant later this year,but I developed an AF heart,so that has to settle before I can make progress.

This is only part of this nightmare story,the rest is on the Website as above.

I really do wish you well and please keep in touch

Best

Tiger74

Posted 1/15/2011 2:16 PM (GMT 0)
Tiger,
Wow, what a story. I have not had time to visit the site. You obviously have some other issues but if they can be fixed first it certainly appears the AUS would be a great help.
A few years ago my wife and I were in the UK and happened to join a VE Day dance with a bunch of air gunners from ww2. This was the 50thanniversary of VE. What a great time that was. They had been meeting every year since ww2 There was also a couple from Canada that happened on the party....they welcomed us like old friends....the allies together again. They allowed a token pilot or two to attend also. love the RAF!
Regard!
Posted 1/15/2011 3:26 PM (GMT 0)
tallguy.

I do appreciate the rapid responses.

Please do visit the site when you have a chance,and apart from reading My Story,there is a wealth of info about other aspects of Prostate Cancer and of course lots about the RAF.I was of course on 74 Squadron Lightning aircraft,what a beast.Have just read a book about the SR 71 (Blackbird) my oh my what a beast that was.

Sadly,apartf from all the other horrors I have faced and must face in the futue ,my PSA was continuing to rise,so I'm on the dreaded Zoladex now,which has at least brought the PSA right down to 0.3ng/ml,however I am fully aware that I probably only have 5 to 8 years left and still think the AUS would give me some decent life.

I am lucky in many ways,because I have done many interesting things in my life and travelled the world.My wife is from the Philippines and we are hoping to go over next month,but I have great fears about the catheter blocking up,but what to do?The choices are ,get on with life or rot in the chair----not my style.

Now that you are more settled with your magic peeing machine can you tell me about frequency and urge to go?I am thinking that as the bladder has not been used as such for 2 years,it may have shrunk and require re-training.How often do you need to open the cuff?

Enough for now and off for a winter walk.

Best

Tiger

Posted 1/16/2011 12:48 AM (GMT 0)
Tiger,

I will check out the site tomorrow. You sound like a really interesting guy with a colorful past.

I am definitely a guy with TB....otherwise known as tiny bladder. I had a large prostate, over 70gm. I do think my bladder shrunk. During the two years following RP I was a constant flower/leaker so never had a full bladder. Still, I would be up at least 2-3 times per night to pee. It seems I get a slight urge and it wakes me enough to where I have to go. 

After the AUS I still get up 2-3 times each night to pee. It may be habit, I just don't know. I have always been pretty much dry at night and never had to wear a pad but leaked pretty much empty during the day. Now I go about every 2-3 hours depending on liquid intake. I do this to keep pressure off the AUS. about the most I can hold is 300 ml and most of the time I pee anywhere from 100 ml to 200 ml.

I am willing to bet you can have many good years ahead of you if you do the AUS. I don't know that much about your condition but have faith for a good outcome. I hope you are able to make the trip to the Philippines with your wife.

I will check out your site tomorrow.

Regards!

Carl

Posted 1/16/2011 10:16 AM (GMT 0)
Hi Carl.

Yes,very colourful (English spelling) past indeed,so you can imagine why I am so upset that I have had so many problems (challenges) due to total irresponsible over treatment.The cancer I could have managed but all this other mess is almost unbearable.We just had a scare about half an hour ago when my catheter and flip valve became totally blocked and as I have the stricture I was unable to 'pee' (B**** painful) I managed to flush it out.We have more mediacl supplies in this house than the pharmacy.

I was really interested in the bladder capacity issue as your situation is so similer to my own.Part of my treatment involved 2 bladder neck incisions and removal of part of the bladder neck due to a secondary prostate tumour in the bladder,they also did a salvage prostatectomy during my major surgery tio fix the fistula and at the same time removed my lower sphincter.In other words they completely ruined me.

I digressed a little there,so back to the bladder capacity.I had a test during the last cystoscopy which indicated a BC of only 220 ml so I guess I would be peeing quite often with the AUS.I think I could manage 2 to 3 hours but anything less would make the AUS pointless in my case and I would have to try to learn to live with a permanent suprapubic cath.

Bored you enough for one day,so go off for a round of golf.I must admit I have never been into golf.I used to spend all my Sundays flying,but can't gat the mediacl now.

Best wishes

Tiger  

Posted 1/16/2011 12:24 PM (GMT 0)
I am confused why the AUS would not work for you? All of us (as far as I know) have the bladder neck or so called internal sphincter removed during radical prostetomy. And most all of us still have the external sphincter still remaining. Are you saying they removed both, or all, of your urinary sphincters? Still , even if that were the case the AUS should work?
Although 220ml BC is not a huge amount, maybe with the AUS your bladder would re-train after a while to increase the BC.
Posted 1/16/2011 12:59 PM (GMT 0)
Knotyreel

Thanks for responding to my entry.

Yes,sadly they removed both Sphincters but there is an added complication to to viability of remaining tissue.

I have had so much treatment that the tissue has been severely compromised.

Radiotherapy

3x HIFU

2x Bladder neck incisions

Uro/Rectal fistula repair (11 hour major open surgery.

A stricture in the bladder neck which will have to be fixed before attempting an AUS.

Beleive me,I do want to try and have my remaining years with some kind of normality to life but so much has been done that it may prove difficult.

If you have time,please read my articles as below for a full account of this terrible horror story.

http://www.74squadron.org.uk/medical_matters.htm      Chapter 8

Just a note on the double cuff.My specialist (Prof Mundy at UCLH) is one of the leading men for this op,and he DOES NOT favour double cuff as they are more complicated and prone to failure.He did try this for a while but has reverted to the single cuff.

Best wishes from England.

p.s What is your latest since Oct?I think it was October but you guys have your dates back to front,or is it us who have it wrong?

Posted 1/16/2011 6:47 PM (GMT 0)
Tiger!
If you have not noticed it yet, at the top of each thread you will see "show newest post first". Also, at the bottom of the message when you hit submit where you can check to have your profile shown and to be notified of new posts. You may know this but it took me a while to find them.

I feel my bladder has stretched somewhat now that I have the AUS. That said, I still get the slight urge to go when I have 100 ml or even less in the bladder. The urge is really strong when I have 300 ml. I rarely wait that long to go. I just got home after being out about four hours...had a pretty strong urge and only urinated about 150 ml. I suspect that it has something to do with nerves in the urinary tract. I often feel the need to go more in the upper penis/urinary tract than in the bladder. I don't find that needing to go every 2-3 hours to be a problem.it's much better than dealing with pads especially now that I have mastered what I call the one handed technique and can go without dropping pants.

Of course it seems I remember that you Euro guys more often pee while sitting so this might not matter.....you are more civilized than us Yanks.

Cheers!
Posted 1/17/2011 11:33 AM (GMT 0)

HI tallguy

I'm going off air for a few days to sort out a few problems with my PC and other gadgets.

I am so pleased that you are able to now lead a better life.

Have you managed to take a flight yet?I was wondering about the differing pressure on the reservour as most aircraft are pressurised to 8000 ft.

A basic question on the use of 'SIGNATURES'.Is this the info which appears at the bottom of each of your posts,ie medical history?

I had an emergeny yesterday with a total retention situation when the catheter blocked with sludge.Fortunatly I managed to disconnect everything and flush it all out,so all is working again thank goodness.

I had to laugh about the one handed technique,and my evil mind took me back to my youth !!!

By the way,we still stand to dangle. 

I was wondering if we could perhaps send an email with a few pics,but not sure how we could achieve this to remain confidential.You could try sending a message to my Website under the Webmaster  (that's me) address

Take care and have fun.

Tiger  

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