artificial sphincter questions: First time here

I just found this site...Thank you, and I hope someone can help us. My husband has been on an extremely difficult road with his Pca. He was dx in 2001 PSA 16, Gleason 4 + 3. He had seeds, external radiation, and lupron for one year afterwards. The psa began rising quickly in 2005, and in Sept 2006, he had salvage prostectomy at MSK....Due to radiation damage, the healing was unsuccessful, and he got a fistula...a connection between the bladder and the rectum..After much agony and then a fistula operation to correct it...he had a catheter in for almost a year. Now he is totally incontinent, plus his hip is extemely painful 24 hours a day..we think from the lupron that gave him osteoporosis...He is on a lot of pain medicine, and now the doctors are suggesting an AUS or artificial sphincter. I cannot seem to find anyone who has had one put in after radiation AND salvage surgery. It seems to me, that with the difficulty in healing with the radiation damage, that another operation in that area could be very hard to heal....but dealing with being constantly wet, is so debilitating for him...He went from being a happy healthy guy to being a depressed invalid with a cane in less than two years...This, not from the cancer, but from the side effects of the treatments...That is why I want to find out all we can about the AUS. Please, if there is anyone who has experience we would love to hear. Di and Pete

Welcome, divo.  Yours is the first report I have read here of salvage prostatectomy after radiation.  I am sure lots of people will be interested in this fairly rare procedure, if you are willing to discuss.  In the meantime, a couple of AUS guys should be around shortly.  I hope you and your husband can find the information you need here, and that he can begin healing and improving his state of health.  Stick around with us, there's comfort in sharing...

Thanks to the moderators that answered my question.
Yes, my husband at age 67 was dx with psa 16.5 and gleason 4 + 3...He had conformal radiation and seed implants and one year of lupron in 2001. He was fine until 2006.....We thought everything was fine, although troublesome ED, it was just beginning to be better, and he was not incontinent.....well, his psa began to rise fairly fast....from 2.5 to 4.5 to 6.5 within six months.
We went to MSK....and Dr Eastham operated on him....we were told that there was a 40% chance of total cure, and a 2% chance of fistula happening, and he would have nerves severed with no chance of erections and possibly be incontinent. With those discouraging percentages, both doctors, the oncologist and surgeon recommended the salvage surgery. They both said it would buy him time and also possibly a total cure. I really believe the side effects were toned down...We did not talk to anyone who ever had salvage surgery....We couldnt find anyone.... Pete had bone scans which were normal. and then in Sept of 06 the salvage surgery. Almost immediately there were problems.
He had the catheter in for 6 weeks because it became constricted....then he developed a fistula. The radiation burned through to his rectum... I noticed that the catheter was bloated with air and also was very dark. I called the doctor and the nurse said. "not a good sign" no kidding..! Well it was a fistula, and he had to have another operation in January to fix it. The catheter then was in for another six months...it has been an ongoing saga of tremendous proportions.. He still has to catherize himself once a day to keep the constriction open...
.He is starting to use the clamp for an hour a day starting today...to see what happens then......The side effects are just horrible for poor Pete... Now we are trying to decide about the AUS, and whether to undergo more surgery. His hip is extremely painful because of the lupron that took the calcium out of his bones, and the hip doctor wont operate until something is done about the catheter business. If anyone knows about the AUS please let us know....also if you are thinking about having surgery after radiation....I would rethink it. Thanks Diane and Pete

Dear Gene, Thanks so much for your information. It sounds like you are going to be all set in a few weeks...!! Yes, we have the clinical information,...Pete would like to find someone that has had the salvage surgery after radiation, and then had the AUS implanted. Do you know how long the AUS has been around? Im sure that you wont have any problems, because you have a good doctor that has done many of these, and also because you have not had the radiation and seeds. That is what has caused Pete so much agony....not after he had the radiation, but after he had the salvage surgery....five years later....Thanks for your prayers...I actually built a little grotto in the back yard for praying! Diane

divo, although I do not know exacty how long the AUS has been around, one doctor I read after has been doing them for 20 years.  Please go to the control panel, follow the instructions and give a profile of your husband so that each time you post, the info will be there. 

Gene214

Hi Divo.  I had an AUS installed 2-1/2 weeks ago and am still in the recovery phase.  So far no problems. 

 

I can't give advice on the suitability of an AUS after what your husband has gone through (poor guy!!), but I can endorse what Caring Wife says.  I've been using a condom catheter - a low tech version of the Bioderm that Caring Wife describes - for around 6 months now and I strongly encourage your husband to examine these devices if he has not done so.  It took a few weeks to get used to it and to experiment with different brands, but I'm sitting here typing with no awareness that the device is fitted. I empty the bag every few hours. If it works for him, he will be greatly relieved by not being wet and burning all the time with the pads.

 

Good luck.

Berb

 

 

Hi

My name is Jerryv and I am the guy who has had two AUS failures. 

To just tell you a little of the progression of things.  First of all I am 89 years young so age has very little to do with your attitude of what you are going thru.  Abut 12 years ago I had the seed implant and Lupron and everything went well for 10 years.  One night I got up to pee and nothing happened so I went to the emergency room.  Went to see urologist who performed the operation and after trying different things for about two months he said I needed a blue  radiation treatment.  I don't know if that is the correct term but when I got in the operating room the nurses said it was the blue light special.  That did not work and was the wrong thing to do so after about two months I went to a different urologist.  Afer using every pill invented by man to stop this he suggested the AUS.  At that time I new very little about it and the doctor was no help.  He was the son of a very successful urologist in the area so I followed what he said.  I didn't know what questions to ask and the results were very dissappointing.  In September of 2007 the AUS was installed and was activated six weeks later .  I did not see a unit before it was installed and didn't really know how to operate it.  I kept telling the doctor this did not emty  my bladder and he said thats as good as it gets.  In December 2007 this thing stated to abcess and the whole unit had to be taken out.  In February 2008 I had a new one put in by the same doctor.  After six weeks when it was to be activated is was still draining and the doctor said it was draining urine.  When I asked him why that was happening he said he did not know.

He gave me antibiotics and told me to see him in two weeks.  I was devastated and thru some connections got an appointment at Mayo Clinic in Rochester, Mn.  They were amazed at what had happened to me.  They performed an emergency operation on me at 11 PM to clean everything out because the infection was so bad.  I was in the hospital for a few days at which time the put a picline into me so I could go hom.  When I got home I had to go to the hospital every  day for a month to have antibiotics put in me for about a half houreach day.  I am doing well now but am very incontinent and am going to try the comdom system and hope it works.

I am schduled to be back at Mayo in September to have an AUS installed this time by a surgeon who has done hundres of these successfully.  I know it is very difficult to go thru this but don't get down on youself.  This not only slows your progress but hurts everyone that loves you and are doing their best to get you thru this.

Good luck to all of you and keep doing the best you can and suck it up and be stong.  Sorry for my rambling.  AUS has been arround since 1972 and the later models are much better than the original.

Hi divo,

Would you mind telling me who did the seed implant and what kind of seeds were used? Also, was it Rapid Strand or SourceLink? My husband goes in on the 23 for Brachytherapy.   

 

Thanks Berb...we are checking these things out! Have a good weekend...! Di

Good luck with the surgery Gene214.

Regards, Berb

Good luck tomorrow, Gene! Ill be sending good vibes! di

Hi Jerry,

Here’s what I use.

Bag: Conveen leg bag 500 ml capacity with 50 cm tube reference number EA5161

Straps: Conveen leg straps with buttons reference number 50501

Sheath: Conveen Easifit Self Aadhesive Non Latex.  You should preferably be fitted by an incontinence nurse for the optimum diameter and length.

I strap the bag just below the knee so it fits on the calf.  I've tried the ones with the thigh strap but they keep slipping down no matter how tight the strap.  Placing it on the calf means the bulge of the calf muscle provides a natural barrier to slippage.  I have the tube on the inside of the knee where it can flex with the knee movement.

I found some discomfort on the skin of the penis until the skin adapted to the adhesive which took a few weeks.  However, right from the start, this was better than the burning of the urine in the pads.  With the pads, if I restricted my fluid intake to keep the urine volume down, the concentrated urine burnt; if I drank more to relieve the burning, I filled the pads too quickly.  The drain system did away with all that.

After the initial fitment by the nurse attached to the urologist I was seeing, I went to an Incontinence Supplier and had a consultation with their in-house incontinence nurse.  She gave/sold me a number of samples of different brands to trial, and from these I made my selection.  You can download the catalogue for the supplier I use at the link below, however you will want to purchase locally rather than from Australia.

http://www.biziworks.com.au/nationalcontinence/downloads/independence_solutions_catalogue.pdf

I change the sheath every 24 hours.  More often and the darn thing is hard to pull off and the adhesive hard to remove.  If I leave it more than 24 hours, there is a risk of leakage.

I wash the bag every 12 hours with plain warm water, squirted into the tube with a 50 ml syringe designed for that purpose.  I’ve read that a mayonnaise squeeze bottle will also work.  They recommend replacing the bag every 7 days.  Some times I’ve gone 2 weeks, but sometimes the bag and tube absorbs a smell after a few days that can’t be removed, so I change then.

If you get a leak, it will most likely be because the penis is not clean and dry when you put the sheath on.  I wash thoroughly with soap and warm water twice, then pat dry with a paper towel, and then fan it with a piece of cardboard for 30 seconds to make sure it is air dry.  Get a piece of stiff cloth (even paper works) around 5 inches square and cut a hole in it the diameter of your penis.  If you slide this over the penis and press it up against the pubic bone, you will keep most of the hair out of the way when you roll on the condom.  Hair caught in the adhesive is not pleasant as it pulls.

Some places recommend lying down to put the sheath on, but I found that hard on my neck trying to see what I was doing.  I stand up and find it easy to do.  You need to hold your hand around the penis for 20 secs of so after placing the sheath on as the warmth sets the adhesive.  I failed to do this one day and the thing leaked after some hours.

On a several occasions over the last 6 months, usually in very hot weather, I have grown a fungus under the sheath.  It is important to kill this straight away at the first sign.  You can smell it in the sheath when it is removed.  It is like a brown coating on everything, including the inside of the leg bag tube where it inserts into the sheath.  To kill this, I’ve temporarily reverted to pads and applied Canesten cream which deals with it in a couple of days.  I then revert to the sheath, but change it after 12 hours for a day or so.  Remember to wash more thoroughly after using Canesten as residual grease will diminish the effectiveness of the adhesive and you may suffer a leakage after a few hours.

One more tip: to stop the urine dribbling on the floor through the end of the sheath as I am washing the bag, or getting into the shower, I fold over ½ an inch of the spout of the sheath and use a clothes peg to hold it shut.  A small amount of urine will build up in the free space at the end of the sheath, which you can then empty.

Hope this all works well for you.  The important part is the fit, and a visit to a specialist incontinence nurse who can let you try different brands and styles is a good investment.

Regards

Berb