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AUS Repair

Trew
Posts: 931
Joined: Jan 2010

I was scheduled to get the cuff on my AUS repaired in November, 2020, but my hip died and I had to get that replaced first.  Both hips have now been replaced from avascular necrosis- complication from radiation.

 

I am now scheduled to get the AUS cuff repaired April 5.  I think I had the AUS installed August, 2010, so it's been in 11 years now.  Not too bad, I guess.  

 

Prostate cancer is serious life changing stuff.  

 

I was stage 4, 50/50 chance after 5 yrs.  That was in March, 2009.  I'm still here.  

 

And still backpacking at age 72

 

 

Josephg
Posts: 287
Joined: Jan 2013

I'm very pleased to read that you continue to move forward in life, and not let PCa get in the way of you pursuing a good quality of life.

I'll be very interested in reading about the details of your upcoming AUS cuff repair.  It sounds like you are not going to have the entire device removed and replaced, but instead only one component of the device will be repaired/replaced.

jimco236
Posts: 13
Joined: Nov 2012

What type of testing did you have to determine that only the cuff needed repairing. Mine leaks but I don't really want to go through the complete surgery again.

Trew
Posts: 931
Joined: Jan 2010

No test just for the cuff.  The urologist asked how many pads I was currently using.  He held a basin under the end of my penis and had be caught a few times- I leaked.  The original AUS was installed in Aug. 2011.  It was time for a new one.  

He was hoping just the cuff needed replacing, but once inside he discovered about 50% of the fluid in the resivor was gone.  He determined the system was leaking somewhere and not getting enough pressure to seal off the uthrea so he installed a complete new system this week- yesterday.  I am amazed at how comfortable I am day 1 post op.  System isn't activited yet, so leaking a lot, but really doing well.  

 

I am pretty certain this is going to work just fine in 6 weeks when it is activated.  

 

tshug
Posts: 7
Joined: Oct 2018

Trew, are they just repairing the cuff or doing a complete replacement? I had my AUS put installed in 2018 and was told it should last 10-12 years. I also understood that if there were any complications with it that a complete replacement would have to be done. i have minor leaks with mine now when sitting and getting up from time to time. Nothing serious that needs to be addressed now, but if the cuff can be repaired in the future I  would imagine the surgery would be a lot less intrusive.

GeorgeG
Posts: 152
Joined: May 2017

Can you tell me more about your hip problems. I have had RP (2016), SR (2017) and ADT (2017 -  ) and I have developed severe hip/leg pain. I am in the process of figuring out if it is old age or PC treatment induced. The only guy I know personally that has undergone SR has had at least one hip replaced.

 

 

George

 

Trew
Posts: 931
Joined: Jan 2010

George, Hard for me to say what you may be expereincing.  I had my prostate out in 2009, and then radiation in 2010.  AUS installed in Aug, 2011.  

 

In 2017 I started having a lot of discomfort in the groin area where the leg and body meet.  I went in to see an orthopedic doctor and was told it was my hip.  Avascular necrosis- the hip ball was dead and need to be replaced.  

 

3 years almost to the day, in 2020 I developed the same problem in my left hip.  I was DX with the same problem I had in the right hip.  The ortho doc was pretty certain both hips were destroyed by the radiation.

That is about all I can tell you about the hips.  I was age 68 for the 1st hip and 71 for the 2nd hip.

 

Go see a good othro doctor.  If you are in the Phoenix area I would recommend Maxwell Thomas.  Very good at replacing hips.  

 

Trew
Posts: 931
Joined: Jan 2010

Monday, April 5 I had a whole new AUS put in.  

 

The urologist was hoping that all I would need would be a new cuff, but he was prepared just in case.  

Once inside he found the fluid in the resivor was about 1/2 gone.  The system was leaking somewhere, so he installed the entire AUS system.  I am 1 day post op.  Had the cath removed this morning.  In 10 days stitches come up and at the end of 6 weeks he will activate the system.  

 

I was impressed with this guy.  I have significantly less swelling then I had with my original doctor at the U of Michigan.  Today, just sitting still, or gentle walking- my pain level is at 0.  

Surgery was done in Scottsdale, AZ.  Doctor's name is Dr. Frank Simoncini.  I went to his Gilbert office.  

I am hopeful the leaking will end in 6 weeks.  Right now, no active device, I am back to pads and leaking- very little control.  

 

 

 

 

 

Josephg
Posts: 287
Joined: Jan 2013

Thank you for your update, Trew.  My original AUS failed in the same way - sprung a leak, and had to be entirely replaced.  I'm glad to read that you are feeling quite good, post-op.

Trew
Posts: 931
Joined: Jan 2010

Interesting we had the same problem.  The urologist said over 50% of the fluid was gone.  I am 2 weeks out today.  Dripping all the time, but I am retired now and I can just stay close to home and the bath and pads and dry underwear and a shower and away from social engagement. 

I think I almost forgot how terrible incontience is.  I am scheduled to have the AUS activated on May 13.  The doctor is hopeful it will be successful.  He has done many AUS instalations.  I do know I am having a lot less swelling with this doctor than I had after the first AUS. 

And it is amazing how automatically I want to reach to the pump but as soon as I touch the scrotum I remember very quickly.  

  

 

Josephg
Posts: 287
Joined: Jan 2013

Hi Trew,

I'm looking forward to your advisory that your AUS is activated and working well.  As we both know, it is a gamechanger for regaining quality of life for incontinent folks.

VascodaGama's picture
VascodaGama
Posts: 3353
Joined: Nov 2010

I am glad for your success in the repair. I image you back on the road riding your bike along the vast wilderness regions of USA. Do you use cowboy boots and hat?

Just kidding but that is what we Europeans envy in the Americans.

Best,

VG

Trew
Posts: 931
Joined: Jan 2010

I am a backpacker and hiker, not a biker, but same idea.  I am looking to be out in Colorado in July for 2 weeks up in the Rockies.  At 72, still backpacking.  But the last year or so I have had more and more problems with leaking and related problems and hygene is a probelm in the backcountry.  So time to get it replaced.

 

Now its just a matter of waiting for May 13, 9 am.  It doesn't take long to know if the procedure was a success or not.  

Josephg
Posts: 287
Joined: Jan 2013

Hi Trew,

I'll be out West in July, as well, spending time in the Grand Tetons National Park (canceled last year, due to Covid).  Being continent will make that adventure SO much more fun.

Trew
Posts: 931
Joined: Jan 2010

New AUS activiated this morning at 10 am.

 

5: 30 pm same day.  I am dry!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

My doctor was Frank Simoncini in Southeast  Vally Urology.  

Right now the new AUS is looking and feeling very good.  

 

eonore
Posts: 107
Joined: Jun 2017

Congratulation!  You are an inspiration.

 

Eric

Josephg
Posts: 287
Joined: Jan 2013

Great news, Trew!!   Your quality of life is back!!

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