Artificial Urinary Sphincter Implant (AMS 800) -- help!!!

I just had the AMS 800 installed by Dr Arthur Burnett at Johns Hopkins in Baltimore, MD on 2/2/2016.  So far, it has been great for me.  I do have a very light leakage...only a few drops, and I had one time where I accidentally activated the device by sitting across a ridge.  You do have to be conscious about how you sit, etc.  I am 63 years old, had a prostatectomy in Sep 2012.  Many complications...urinary stricture surgery, incontinence (6 pads/day) which led to the AMS 800.  I am happy with the results so far...some other issues, but little by little.  I was a little surprised by the overall cost of the procedure.  I have good private insurance...typically pays 80-85%.  Just received a $24,000 bill from Johns Hopkins, Dr was another $3k and anesthesia another $2k or so.  So far my part has run around $5k out of pocket.

I am in my 13th year dealling with incontinence after prostate surgery. The last 2 years has been much worse (6-8 pads per day). I have considered the AMS 800

since the onset of incontence and recently had the procedure 5 days ago and am very concerned with the outcome. first I noticed a weak stream and trouble empting my bladder. then the swelling began big time and much pain. I was so looking forward to relief but so far it hasn't happened.

Has anyone had any similiar problems.

tpelle said:

AMS 800

Hap:  Probably the swelling is causing the weak stream.  There is a lot of pain during the first couple of weeks, but it improves gradually.  Be sure you take the pain meds as prescribed.  There won't be any relief from the leakage until the unit is turned on.  For me that was at about the 7th week post surgery.  In the meantime you will still have to deal with leakage but it shouldn't be any more than you experienced before the surgery.  The pain should mostly be gone by the time the unit is activated.  That's been my experience.  tpelle

tpelle, thanks for your reply. I think you are right on about the swelling causing the weak stream as the problem has improved as the swelling improved. My doctor didn't warn me about what to expect after surgery so I was very concerned, his reply was oh I've seen much worse which wasn't all that comforting but now that I know I am dealing with it as best I can thanks to a wonderful wife who has been very supportive.

    When did you have the procedure..have you been satisfied with it?

     Hap

tpelle said:

AMS 800

Hello Hap:  My open radical prostatectomy was in 2003.  During the first ten years I was averaging 2.3 Depends pads per day.  At the end of the ten years I had the AMS 800 implanted.  As like you the biggest concern during the recovery period was not knowing what to expect.  However, several of the guys on this site were most helpful.  After activation, the unit worked beautifully for about 17 months, then failed, and I was back on 2.3 pads per day.  After a month or so I returned to the U.S.Med, Davis Urology Department for help.  The balloon had lost it's charge and the cuff was not closing.  Fifteen months ago the first unit was taken out and replaced.  The doctor discovered that the first balloon had a pin-sized leak and had lost it's fluid.  The new AMS800 has been functioning perfectly for the past thirteen months.  Although the second surgery was more extensive (removing the old and implanting the new), it seemed easier because I knew what to expect.  In a couple months when your AMS 800 is working, you'll feel that the post surgery trauma was worth not having to use pads.  Although, I still do wear a liner as from time to time there is a drip or two when I sit on an irregular surface.  Hope this helps.  I'll respond if you have further questions.  tpelle

Hi Tpelle, my aus was activated on May 17 and the device is amazing. I stay completely dry all day and night. Like you I wear a liner which I could get by without.

I wanted to thank you for previous replies..they were very helpful. I still have one problem..The device appears to be causing me some pain and can be very uncomfortable especially if I am on my feet very long. Did you experience this at all? I noticed in your last post your surgery was in 2003. That ws the same year I had mine..April 3 @ 9:00 am to be exact. It is definitely a life changer. It has been more severe for me due to a condition called diabetes Insipidious.  It causes excess urination which complicates an already bad situation.

Thanks again  for your help

Hap

I am so enjoying not carrying a pad in every pocket when I am out that the pain is minor. I have been thinking that the pump assembly inside  the scrotum has been my problem but the area around the cuff is very tender also so that coulld be very well be my problem also since pain is sometimes hard to pin point. My doctor tells me to give it time..maybe he is right.

   Thanks again for your help. Hope your garden does well.

Hap 

I cannot give you any advice on the sling, other than when I was reviewing my options, I read a lot of negative reviews/experiences about the sling, basically stating that it was not all that effective.  I had the AUS 800 implant surgery in January 2013, and it completely took care of all the concerns/dreads that you mention in your post.  It has been a life game changer for me, and I wholeheartedly recommend it to anybody whose quality of life is suffering, due to incontinence.  I've listed some links below that detail my experiences in chronological order which you are welcome to review.

http://csn.cancer.org/comment/1324584#comment-1324584

http://csn.cancer.org/comment/1326323#comment-1326323

http://csn.cancer.org/comment/1339326#comment-1339326

http://csn.cancer.org/comment/1339561#comment-1339561

http://csn.cancer.org/comment/1344785#comment-1344785

http://csn.cancer.org/comment/1413239#comment-1413239

Please let me know if you have any additional questions.

I'm glad that the information that I provided to you assisted you in coming to a decision.  I wish you the best of success in your upcoming procedure and the resulting new life of continence.

Looking for some direction. In 2005 I had a Radical Prostatectomy ( cut from the bellybutton to to the pubic line ) recovery was long and painful. My doctor advised me about 1 % were incontinet. Two and a half years later after taking every medication available doing Cagels (what a wast of time) I was told that the AMS 800 was the answer to to my problem. I had the procedure and had good result for a couple of years and then the leaking started getting worse. I returned to my doctor and was told I was not leaking enough to add a second cuff. I went to a cancer center and talked with a doctor that said he wanted to scope my urethra. I was able to see on the screen that the inside of my urethra was white. The doctor said that the cuff needed to be repositioned. So five years after the first device was implanted it was removed and another AMS 800 was implanted. Another year passed with good results ( not great but good). The leakage started getting worse. I returned to the cancer center and the same doctor stated he wanted to replace the cuff only. So another operation nine years after the prostatectomy. Again good results ( some leakage but workable ).  Now 2016 eleven years after the first operation I am having an increasing amount of leakage. I am seeing a new doctor that is closer to me as the cancer center is four to five hours away from my home.  I have been doing test on my intake and discharge of fluids, taking new medication and have had botox injections in my bladder.  Not much help. Now my doctor has recomended The InterStem system that places a wire in to my spine with a control that sends an electrical charge through my spinelcord to my brain to control my blader spasems. At this point ( 09/2016 ) I am feeling like a ginny pig and have not  made up my mind about having the InterStem system implanted. Any input?   

I had a radical prostatecomy 8/18/11 with EBRT following.  I tried many remedies for incontinence without success. I had the AMS 800 implant 9/14/16. When it I found out the pump had rotated and in upside down.  I am planning on having it corrected, but don't have any information on recovery from this procedure. I am told it is a 10 minute procedure with general anestesia. If anyone know about restrictions, weight limits or recovery time away from work, I would appreciate it.

Thank you

tpelle said:

Pain From AUS800

Hello Hap.  It's good hearing that you have made substantial progress from those first few days following your AUS800 implant.  Those early days can be trying. My prostatectomy was on the first Thursday of 2003.  Was in the hospital for two nights.

I do have some pain in the cuff area by bedtime but it seems no worse after I'm on my feet working in the garden for six hours.   Here is my explanation -

The cuff on my first AUS800 implant in January 2013 was far back on the urethra nearer the anus - probably the recommended position.  That caused some irritation and minor pain when sitting as tubing somehow located under the cuff and close to the surface.  Surgeon prescribed daily 100 mg of Amitryptline (a anti-depressant med) to relieve the pain.  It work well.  On the second AUS800 implant in February of 2015 a different surgeon (the first retired) placed the cuff on the urethra nearer the scrotum to avoid any overlaping of the tubing.  It did, but having the cuff nearer the testicles causes chaffing and some pain in the scrotum by bedtime.  So I am continuing the Amitryptline.  This minor irritation and pain is a small price to pay for urinary continence.

I'll be happy if this second implant continues to function for a few more years.  

tpelle

 

tpelle,

i had AUS800 implant at Mayo 6 weeks ago. It's being activated this week. I continue to experience pain, especially in late afternoon and evening. As you describe it is more like irritation, or chaffing. Has your pain improved, or is it something you just learn to live with? I'm hoping it'll improve.

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