Artificial Sphincter Fitted

I had an artificial urinary sphincter (AUS) fitted 3 days ago.  The procedure lasted a couple of hours and I was under full aesthetic.  The surgeon made two small incisions, one under the scrotum to insert the pump into the scrotum and to place the cuff over the urethra; the other in the lower abdomen to insert the reservoir balloon.  I have some bruising and swelling of the testicles and mild discomfort when getting out of bed, but otherwise I’m feeling pretty good.  There is a 6 week recovery period during which the tissues heal around the device, and then they’ll turn it on.

It has been nearly 18 months since my prostatectomy, and apart from a moderate improvement in overnight continence that came after 3 months, I have been largely incontinent, requiring around 8 pads a day. I took the decision to have the AUS fitted several months ago when it became clear on the best medical advice that no amount of exercising or other actions on my part would bring about a natural recovery.  There is no medical explanation for this at this time, other than for whatever reason, my external sphincter is not strong enough to hold the urine in the bladder – despite 12 months of exercises done with great deliberation and done correctly.

When I took the decision to have the AUS, I also ceased using pads which I found very inconvenient and which caused me burning most days.  I switched to a condom drain system, which I found to be very effective and to a large extent gave me my life back.  I’ve used these now for 4 months, and will continue their use until my AUS is activated in August.

Before going ahead with the AUS, I explored all avenues.  I learned from KW’s experience with the collagen and the sling (thanks KW) and I also checked out the stem cell treatment that was mentioned on Healingwell a while back (http://www.medpagetoday.com/MeetingCoverage/AUAMeeting/tb/3350).  I spoke with a doctor from the University of Innsbruck in Austria which is developing this treatment.  Unfortunately it is not suitable for those with severe incontinence, and he recommended I go ahead with the AUS.

Thanks to those on this site who posted their experiences with the AUS as it gave me confidence to progress down this path.  I’ll post an update in 6 weeks and let you know if I am dry.

Berb

Berb,

I'm glad to hear you made the plunge.  I follow your recovery carefully since I am to have mine put in in 3 weeks!  I have searched and searched, like you, KW, and others, and now feel I know all the clinical things there is to know about the system.  I went to hear Dennis Holt last nigh, a man who travels all over the country sharing his experiences with the AUS and the IPP.  His incontinence was as bad as ours at least and I think it was even worse, since he had both the robotic and the open prostate surgies.  The robotic left some prostate tissue remaining and therefore three days later they had to go back in with the open surgery.  I though I had it bad until I listened and questioned him.

I will have both the AUS and the IPP fitted in Mid July.  Although I've been very nervous about the whole process, I am now looking forward to getting them done and getting back to a more normal life.  I am lifting up prayers in your behalf now.  Please, please keep us posted as to your progress.  Not too many have experienced the kind of incontinence we have... thank the Lord most don't.  But the Lord has so blessed medical science in that we do now have an option.

Gene214

Hi KW. I live in Australia and the doctor was Don Moss who performed the surgery at St John of God Hospital in Ballarat.

Regards, Berb

Hi AnxiousWife,

 

Sorry to hear about your husband’s ordeal.  He clearly has had some unhappy complications.

 

Back in January I sent an email to the Innsbruck University but I never got a response.  I decided that given that I was going to be in Europe anyway on a motorhome vacation before my surgery, I would visit the University and see if I could get assessed.  Unfortunately, a late snowfall closed the road into Innsbruck, so I decided to call Dr Strasser.  He was not there and I spoke to another doctor involved in the project.  He spoke good English.  I’m sorry that I can’t locate the doctor’s name or the phone number that I called, but your phone company should be able to assist you to locate it if you want to call.

 

He explained that the stem cell treatment had about the same results with mild incontinence as the sling and collagen treatments, but was unsuitable for me with my 8 pads a day incontinence.  He said the AUS was the gold standard for this sort of thing.  He added that the stem cell treatment was very expensive.

 

4 months post surgery is a difficult time if you are awaiting return of continence and seeing stories of others who are regaining theirs.  Everyone has to deal with the mental side of this process in the way that best suits them. In my case, I am a long distance runner and decided shortly after my surgery to train for a very difficult run across a wartime trail in the jungle and mountains in Papua New Guinea.  I did complete this run, taking 43 hours and using 18 pads along the way.  My focus on this project allowed me to keep the incontinence from totally dominating my life over this difficult period.  I realise not everyone has a background to do such a run, nor would it attract them, but the principle is something that might assist your husband.

 

Regards

Berb

Well, Jack38, I have been on this bumpy ride for 17 months and am now scheduled for surgery. Scarry thoughts at first, but now have made peace with these implants and am anxiously awaiting my mid-July installation of AUS and IPP. 

Both clinical research and testimonies from those who have had both the surgeries are very encouraging. It has been extremely hard to find guys who have had these implants to tell how it really is with them,  but after locating several men who have experienced them, I am now on "go."  And you are right... The trick seems to be to find a surgeon who has lots and lots of experce in installation.  I think I have found such a surgeon.

Gene214

Hi Berb

Read with interest about your being fitted with an AUS.  Hope all goes well with you and it looks kike the doctor you had do this had done many before.  I had two of them installed and they both failed because of a doctor that apparentely didn't know what he was doing.  I am now scheduled to have this done again but will be done by a specialist at Mayo Clinic in Rochester ,Mn.

You state you are using a condom drain system and seems to work well for you.  I wonder if any other men have used this and what their success rate is.  I'm sick of cumbersome pads.

The best to you on your recovery and would like to hear from you after activation.

Jerryv

Great news Berb!

Since my implans went in 3 weeks ago, I too am waiting excidedly to test the outcome.  I could handle a "teaspoon" as opposed to what I now experience.  Thanks for the update.

Gene214

A further update…

I got no leaking during my running yesterday, which went for 75 mins in 2 sessions. I included some sprints and some stairs to see if that would induce leakage and it didn’t. It was also a pain free run, telling me that they did a good job in locating the equipment in the right parts of the body to allow normal activity.

One of my goals over the coming weeks is to stretch my bladder which has shrunk through lack of use over the last 18 months. This is done by holding on longer when the urge to urinate comes. As my bladder fills, I get surges of pressure and I contract my muscles to assist the AUS until the sensation passes in a few seconds. However, I’ve noticed a few drops sometimes escape, and after a while, I get a wet patch on my underwear about one to two inches across. I’m going to wear a light panty liner to catch these from today. I also get squirts during a bowel movement, and interesting also once when I turned on the shower.

I’m finding the squeezing of the pump a little harder to master than I thought it would be. It requires more than light pressure to activate it, and you have to hold the other end firmly with one hand while squeezing, otherwise, the pump just slips away under the highly mobile scrotum skin. But with practice this is getting much better. I’ve learned to wait 45 seconds after passing fluid for the pump to close off, before giving things a final shake; otherwise you end up with fluid in the urethra which has nowhere to go but out.

But all these are minor things. I am very happy with the unit which I would rate in my instance at 99% effective. Hope this encourages others in the same position as me to give it a go.

Berb

GREAT Berb. You are making me look forward to my AUS already!
KW

Alex,

I'm not sure what might be determined to be saide effects.  It is surgery, with the risks.  Then, it also is a man-made device instead of the one God gave.  But when everything goes well and the new sphincter is allowed to operate as designed, it is a jewell of a device.  The thing I have noticed about my own attitude toward such devices are the stages I have gone through.  First it was "I'll neve have that."  Then after failure to regain continence afte months of trying, it becomes a "hummmm...  Maybe I should consider it."  Finally, there is the "Yes. I am going to do it!"  One usually will do what one can to get back to normal , if it is at all possible.  Continence and potence is possible to some who have failed to attain the natural and expected.

I am to get my AUS and my IPP activated tomorrow.  I will report back on the after-effects asap.  Perhaps then I can speak from experience.  Berb will most likely be along to share his experience.

Gene 

    Berb,  Glad things are going well for you.  I have my AUS comming up this friday 8-22-08.  Thanks for the updates.  I will start a AUS post as I go through my journey also.

    LW

   

Berb,

A question for you (or anyone else who has AUS): 

Did your doctor recommend deactivation of the device at night?  I had read in my research that some recommended it and some did not.  It occured to me that my doc did not mention it so I emailed him and he said it was not needed for me.  What did your doc recommend?

I am still bubbling like about my new sphincter!

Gene214

Berb,

My doc. has not talked at all about the bladder capacity.  I don't even know how many ounces I am urinating, but I will start noticing.  I may be trying to go too often because I don't want to drip.  So far, if I go about once per hour, I am not dripping any.  I am not wearing a pad at all.  My briefs are staying dry.  That is so great to me.

Berb, one thing I have noticed is that my stream is not as strong as it was pre-surgery (for AUS).  Of course I am talking about my stream when I first get up in the mornings.  The rest of the day was a costant drip, drip.  I seem to be emptying out ok.  I feel that perhaps all the changes which have taken place in my penis (implant) might be constricting my urine flow. Have you noticed a change in your stream?

Also, when I release the cuff to urinate, it takes a few moments for the urine to start comingl out.  How would that compare to yourself?

 Gene214