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AMS800 Activated!!

Trew
Posts: 891
Joined: Jan 2010

Sept. 19, 2011!!!!!!!!!!!!!!!!!!!!!!!!!!!!
sometime between 1:30 and 2 this afternoon Dr. Latini at the u om MI activated my AMS800. Actually took her three attempts to get it started- a bit painful. She stopped twice- she could see I was in a bit of distress but the 3rd time she got the activaton button in and it was done. The good Dr. and a residence she was working with then helped me do a hands on demostration on how to operate the device. Then I drove home.....

Ate supper with my wife and then put on my walking pants and I told her I was going to take the new body part out for a walk sans pad- about 40 mins- up and down logs, stopped to pull a few weeds along the trail- and about 7 stops for an underwear check- no pad on this walk- and dry all the way around, coming back into the house sitting at the computer, dry, dry, dry, DRY!!!!!

Pad free for the first time since March 23, 2009. I am so excited right now. I"m going to go for a longer hike this weekend- 8- 10 miles just to try this out with a light pack on my back. tonight I am going to sleep with no pad on just to see what happens.

I am so excited!!!

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

Your report is good, good news. Congratulations.

hopeful and opt...
Posts: 1282
Joined: Apr 2009

nice to hear great news

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

I hope you get many years in that smooth "Gearbox".
VG

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

Trew, I am happy for you as I'm sure you and your wife are! You have every reason to be excited.
Congrats to you!!

lewvino

Swingshiftworker
Posts: 620
Joined: Mar 2010

I'm so happy for you! Wishing you a long and pad free life from now on.

Ciao!

ob66
Posts: 214
Joined: Apr 2010

Have not been on the forum for months, and lo' and behold I come on to this great news!!! So happy for you Trew. It has been a long road to a dry life. Congrats.

PawPaw J
Posts: 34
Joined: Jul 2011

Trew, Great to see someone excited. We don't see enough of this kind of news. Congrats on many dry years ahead!!!!

Johnny

Trew
Posts: 891
Joined: Jan 2010

Almost 2 weeks snce my AMS800 was activiated. Since activiation no more pads!! I tossed out the Depends- dry all night. No more Tena guards- dry all day. I am much more happier these days.

I had devinci surgery on march 23, 2009,hormone therapy for one year- not two as the firt doctor wanted me to have, and radiation- combination of proton and external. some 2 and half years down the road I just got a nice zero on my latest PSA this month. I'm not going to get another one now for 6 months. My urologist says at this point out I am looking good.

I am coming back from a 5+4 gleason. I am more confident now then I have been since my first Dx in January 09. this site has been a big support and help. thank-you everyone!!

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

Good news on top of good news equals to Good-News to the second power, or simply good-news squared. Isn’t that SUPER?

Let’s celebrate this second power with a “powerful” glass of red-wine.
Congratulations

VG

timothy john
Posts: 2
Joined: Sep 2011

Good for you Trew,
I also received AMS800 and is now blocking resulting in considerable pain, each time this occurs I need to attend hospital for relief.
has this ever happened to anyone, it now transpires that I may !!! need to have it replaced????

guards
Posts: 72
Joined: Aug 2010

Ain't it great.
Just had my 6 mo. Its workin great PSA is still zip !!!
Life is soooo much better today. I hope everyone here is blessed with our sucess
Trew. Its really good that all our experiences are so similar with the sugery, I talked to my Doc about using a cath imed following surgery and he promised to check on AMS policy.
Would have made mine so easy just needed to skip that first day lol'

guards
Posts: 72
Joined: Aug 2010

A question john. Does it require a cath or is the Ams failing? If its a cath sounds like you needed a stint installed prior to the AMS,

timothy john
Posts: 2
Joined: Sep 2011

guards
it appears that the ams is failing and will have to be replaced but I believe that the ams 800 has been withdrawn from the market worldwide so dont know what is going to happen.
Its still works very well most of the time but the blockages are severe and could lead to other issues. i feel that only a few months of usage is very little for the pain experienced in the op and thereafter. one other concern is the burning at the head of the penis, for which the doctors dont seem to have an answer. this concerns me greatly, the pain has knocked me unconcious on a few occassions anybody else experience that and if so did it cure itself as the doctors cant !
thanks for you help

guards
Posts: 72
Joined: Aug 2010

Were you ever on catheters prior to the install?
The recall was some time ago thats true but your doctor should know if your AMS was in the recalled serial number.
Does it require a catheter? or do they just cycle it. Idon't remember exactly which way the recalls failed. Seems like it was failed to the normal mode but I really don't remember for sure.
The recall was may 9 this year and the problem was accidental activation in the first 6 weeks after install.

http://www.mhra.gov.uk/home/groups/fsn/documents/fieldsafetynotice/con117443.pdf

heres a copy of the recall for your info , It appears if you made it through the 6 weeks np.

Trew
Posts: 891
Joined: Jan 2010

I am just a happy camper now- my AMS is working very well. In fact I think it has come alive and considers itself one of the boys down there. when they're cold and run, so does the new part. I have not worn a pad since activation on Sept 19 and only have had a couple of breakout leakage but nothing very serious. This has gone so well for me. Dr. Latini at the the U of MI is my hero.

JR1949
Posts: 230
Joined: Jun 2009

Congrats to you, Trew. I am glad to hear your good news. May you have many padless days.

JR1949

Hondo's picture
Hondo
Posts: 5643
Joined: Apr 2009

Just came over to see how you were doing with the new body part, glad it is working so well for you my friend.

:+}]
╠╣ONDO

kozykitty
Posts: 15
Joined: Jul 2013

 

HI everyone, I haven't been able to get on line with you since JUNE, don't know what I did but I had to get a new name, password, and e-mail address to get back???ANYWAY, I had an 800 inplanted on 9-6 and hope to get it activated on 10-17.  The surgery went well and the recovery hasn't been as bad as I expected, normal swelling and inconvience pain in fact it was less that the surgery for removel of the prostrate. From what I'm reading (from Trew) I should be able to head to Flordia on the 18th of Oct, day after activation. It's a long drive 1500+ miles but there isn't anywhere else to spend the winter! Does anyone have any advice that I might find useful?

 

kozykitty
Posts: 15
Joined: Jul 2013

my user name was "spark plug" and I  lost contact with this site on June 8th, that was the last commet that I could read, "jim 65" was going to try actupuncture to help control his blader. I was wondering if he did try and did it work??  I don't know how to get back the missing comments from June to oct, anyone have any ideas???

Trew
Posts: 891
Joined: Jan 2010

I was surprised to find this post up again.  So I see I have had the AUS in for 2 yrs now.  Time for an update.

 

For the first year it seemed I have little leakage. 

Now, 2 years out, I am having some leakage problems.  Then, I am back to backpcking, riding a bike, doing things like that more, too.  And often when I sit on a hard surface like the ground or a rock it seems to put pressure on the AUS sphincter and I sometimes have some urine escape.  So now I am wearing a womans Always Infinity panty liners.  These are a lot cheaper than men's Tena pads.  I use a pair of scissors and shorten the pad by 1/4 or so and it works better for me.  My wife was a help to me in this- she picked up like 4 different brands of panty liners- Always Infinity work best for me.

 

Still, remembering back to life before the AUS, well, just no comparison.  Back then, before AUS, I was using anywhere from 6- 15 pads a day.  Now, 1 or 2 panty liners.  And I am doing a lot more stuff.

 

So, looking back- The AUS has been a big plus for me.

 

-Trew

 

 

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

Hi Trew and thanks for the update! Glad things are going so much better for you!

lewvino

kozykitty
Posts: 15
Joined: Jul 2013

Hey Trew,  After activation is/was there any follow up with the Doc. or ar you all set for several months?  I have about two more weeks before activation and have questions all the time.  Did the Doc recomend wearing a Medical ID bracelet, dog tags, or something to inform medical personal in case of some kind of emergency??  Did your wife or somebody else learn how to operate the pump in case you ar disabled???  These questions or thoughts came up on the first site that we where on in the early spring. Did the doc recomend the liners or did she feal there was no need for them, I plan on bringing a pad with me for after activation and also ask for a prescription for the liners. Any comments or suggestions that you might have would be appreaced.  Thanks  George  

 

 

Trew
Posts: 891
Joined: Jan 2010

I have an ID card I card with my medical Ins card.

 

6 weeks after activation I had a follow up appointment.

 

since I had the surgery done at a Univeristy hospital once the 6 weeks follow was over I released back to my regular urologist.  but he never checked that AUS or anything.

 

that was it.

 

the device in the scotum behaves just like a tesitcle.  There the testies go, the button device goes.  So if you are out side on a cold day and need to pee it can be a bit chaleenging to get a hold of the device.

 

Etc.

 

kozykitty
Posts: 15
Joined: Jul 2013

Thanks Trew

I think your's was the first name I saw on this site since I started (the first time) and have been following your progress since them, unless there are tow of you!

I hope/plan on leaving the next day for Flordia for the winter, but where I had my work done at the VA i'm sure I can have the follow up, if there is one, done at a VA hosp down there. If not I just won't have one. It's just getting too long a time and cold up here. (mass.) Due to agent orange exposure in Vietnam, the VA says my cancer was caused by that and they are taking care of me, Nice deal.

I also have an ID card next to my licence, may-be next to the insurance card would be a better place. I think I'll still check into having an ID bracelet or something that might be quicker to spot.

George

 

Trew
Posts: 891
Joined: Jan 2010

Happy travels!

 

I moved out of Mich for AZ to get out of winter- I am done with 'em.  No more winter!!!

 

 

johnny p
Posts: 5
Joined: Oct 2013

Hi all. Very interesting reading as I am to have an AMS 800 fitted on Wednesday 16 Oct 2013.I pray that mine will work as well as yours has done Trew. I have other problems as I have a recent recurrence of the cancer but one thing at a time.

Johnny p

 

Trew
Posts: 891
Joined: Jan 2010

Johnny, the surgery sounded much worse than it turned out to be.

 

You will have a lot of swelling, no way around that, but the end results were worth the surgery. 

 

Enjoy the adventure!  I think the AMS is a good call for us men who leak all the time.

 

 

kozykitty
Posts: 15
Joined: Jul 2013

The surgery wasn't as bad as I expected not much swelling, was expecting grapefruit sized testicals but they where not much more that a small apple and lasted only a few days may-be a week,  Not disappointed very happy and now on thursday the doc gets to turn me on and then friday it's off to fl for the winter.  Will be very upset if he tells me no.

This is a great site for reassurance and what to expect, really glad I found it.

tpelle
Posts: 146
Joined: Aug 2003

Hi Kozykitty:  My AUS800 was activated this past spring.  I went home with a pad in my jockeys just in case.  But, the pad was dry at bedtime.  Since then, I have stood at the toilet several times waiting for the flow, forgetting that I had to turn on the faucet (pump).  Difficult for an old guy to change his habits after 80 years.

Soon after activation I began using liners to catch minor drippage when I happened to sit on an irregular surface which would put pressure on the cuff.

Enjoy your winter vacation and your new life with the automatic sphincter.  And, don't forget to turn it on at the appropriate time.  tpelle

kozykitty
Posts: 15
Joined: Jul 2013

Hi Tpelle.   Must be inbaressing to wait for nothing and then remenber.  I'm sure that will happen, but does an accitental release happen ofted and how irregular must things be??  Have you tried bike riding?  The cuff opens or does the pumpet avtivated?  Thanks KK

tpelle
Posts: 146
Joined: Aug 2003

KK:  The drippage seldom happens (once or twice a week), and when it does I don't always know it at the time.  I'll get drippage sometime when getting into the car before being seated properly.  (You have to be a contortionist getting into a Prius).  Sometimes when I'm seated on the edge of stuffed chair cushions, etc.  In my case pump activations doesn't occur.  Even when you have the pump in hand, it's takes some pressure from the fingers to activate. The cuff is at the surface between the scrotum and the anus.  And when the cuff is met with some pressure, it allows  a few drips to occur.  I've never tried a bike, but I think the usual bike seat could cause just the type of pressure to the cuff which might allow leakage.  tpelle

kozykitty
Posts: 15
Joined: Jul 2013

Hi Tpelle.   Must be inbaressing to wait for nothing and then remenber.  I'm sure that will happen, but does an accitental release happen ofted and how irregular must things be??  Have you tried bike riding?  The cuff opens or does the pumpet avtivated?  Thanks KK

Trew
Posts: 891
Joined: Jan 2010

I am back into backpacking.  When I sit on the ground I will often have some leakage, particularily when I move my bottom to get up.  So I now pack and use panty liners when backpacking.  It helps a lot.

 

Bike seats, sitting on hard ground or just an unusal swevel in a chair may cause some urine to leak.  sometmes as much as 1- 2 Tbs. And once in a great while a little more.

 

Still nice to have life. 

 

 

johnny p
Posts: 5
Joined: Oct 2013

Thanks for your encouragement Trew.The op went well with one over night stay in Hospital. Yes things are black & blue & swollen but not too bad. Its more uncomfortable than painful and the main effort is to go towards keeping it all clean to stop infection. The nurse told me that it is impossible to keep the incision sites sterile due to their location and therefore we have to continue with antibiotics for one week. So far so good .

Trew
Posts: 891
Joined: Jan 2010

Johnny, I too was amazed how much better the surgery went than what I imagined. 

 

And I had no problem with the healing.

 

I doubt you will either.

 

 

Trew
Posts: 891
Joined: Jan 2010

Johnny, I too was amazed how much better the surgery went than what I imagined. 

 

And I had no problem with the healing.

 

I doubt you will either.

 

 

johnny p
Posts: 5
Joined: Oct 2013

Had my AMS activated yesterday. Completely dry so it has all been worth while.

kozykitty
Posts: 15
Joined: Jul 2013

got turned on at about 12 noon and have been dry since used one pad all day still dry and worked valve three times great invention, will keep you informed after we get to Fl., Monday or Tuesday.  will let you know how the trip went.  KK

kozykitty
Posts: 15
Joined: Jul 2013

Made it to Fl this afternoon and was dry all the way! YIPEE! used the pad for driving just to be sure and no pad at night,  last pad today and no pad now and still dry. only slight problem is trying to go when not necessary, also it's hard to hold the slippery little pump,May-be if I tried two handed but I just seem to get in the way with the other hand.  Tried the urnal but with the pad I had to drop my draws so that wasn't too convient, will have to try without the pad.   All in all it is a GREAT invention and SOOOOOOOOOOOO nice to be DRY.  Will try bike riding in a couple of days and will let you know how I make out.  KK

Trew
Posts: 891
Joined: Jan 2010

KK, sounds like it is working well.  It seems to me from day 1 the surgery either works or it doesn't.  Sounds like you are one of those  success stories.

 

Sometimes it like playing marbles down there, you go to pump and the device shots sideways and knocks into the other 2, but you will get better with practice. 

 

You will learn to keep your hand on the pump until it is completely re-inflated to prevent post-drippings.  A woman's panty liner is good for that problem.

 

Big thumbs up to you KK and I share your enthusiam.  I a great moment to realize "I am dry again!!!" 

 

 

 

kozykitty
Posts: 15
Joined: Jul 2013

Just wanted to let you all know, I'm still dry and pad free after 7 days! It was a week since activation last Thursday. Still haven't tried bike riding, may-be this week-end.  Only problem is sometimes I can't get the pump to release, seems I can't find the right spot and other times it's right there.  I find the pump just not the bubble, then it gets frustrating but still better than the pads. It's great not to have to always have a pad handy just in case you stay out too long or you have been "leaking" more that usual.

tpelle
Posts: 146
Joined: Aug 2003

Hi KK:  I don't understand your comment that you can't get the pump to release.  Once I have the pump controlled by my left hand fingers at the input/output tubing, I find the shut-off button, then insure that I squeeze below it at the bottom of the pump.  Hope this helps.  tpelle

Trew
Posts: 891
Joined: Jan 2010

I have felt that on/off button at the top of the pump device but I stay away from it.  My thumb/index finger find the pump easily enough, move to the bottom of the device and give the lower button a few squeezes- very easy for me. 

There are times when the tissue does get a little sensitive to being squeezed.  That is real tissue down there.

My present concern is how long will the device last and if new Obamacare/Insurance guidelines will cover a replacement if and when that time comes. 

 

 

 

Trew
Posts: 891
Joined: Jan 2010

KK, You will become more familar with the pump over time.

When I first started disucssing the AMS with my local uro I asked if he had a unit in the office I could see.  He did.  He got it for me so I could hold it in my hands and he showed me how the device worked- how it would hang in my scrotum and the top button and lower button.  That was a very good moment and I have appreciated it and recommended to a few other guys that they also ask to see the AMS device before it is installed. 

You can also do a lot of self self examination.  At night, just take hold of the device and feel it inside you from different sides. 

Also, my AMS pump is just like one of the other boys down there. It moves and turns, and sometimes it even feels larger and smaller in my hand.  I do backpacking now, again, and on a cold day and the original guys pull in tight to the body the pump goes with them and it can be a bit of a challenge to actually dig it up enough to activate the pump.

 

And I do add my doctor was very good at getting the pump placed in the scrotum with enough tubing in it so generally I don't have too much trouble getting ahold of it.  And after 2 years there are is still the occasional "marble shot" sideways into one of the original occupyiers down there so I might even say softly, "Ouch!"   Such is life with an AUS.  And I always hold on to the pump  once I start urinating in case I have to had an additional pump or two, and to sense when it is again fully inflated and I am safe to move on.

 

It is an interesting turn of events in the life of a quiet, typical of man.  I have learned to accept it.  Life goes on.

 

 

kozykitty
Posts: 15
Joined: Jul 2013

Thanks Trew

 

One of my problems is I haven't been pressing HARD enough, can't be too gential.  Also my doc showed me a unit before surgery and it did help plus after surgery there was what looked like a key ring with a pump on it, (replica), I think I should practice on that but things are different once installed.  Also he (doc) said I was built with the scrotum close so there isn'l much of the tubes available to hold 1/4 inch or so but there is no trouble finding the unit and usualy I can manage one hand, two just seem to get into the way and I'm liable to end up with a hand full!!  Still it's MUCH better that before and I'll recomend it to everyone.  As far as having to replace it under Obamacare, I'm working under the VA medical so I don't think that will be a problem.  Hopefully we'll all still be alive when and if the time comes.  (10,15,20 years) or sodown the road

kozykitty
Posts: 15
Joined: Jul 2013

HEYHAVEN'T  SEEN ANYTHING NEW SINCE I POSTED ON oCT 26TH

.  ANYBODY THERE???

Trew
Posts: 891
Joined: Jan 2010

I am sure there are a few people around.  And it seems you are learning to work with the device.

 

 

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