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Ready for the AMS 800 Artificial Sphincter

TomA43
Posts: 4
Joined: Aug 2016

Greetings. to all. I've browsed this site for a year but this is my first post.

I had a robotic prostatectomy 9/21/2015. Incontinent since surgery. I've been through Kegel PT, no improvement. I do various kegels and stretches daily. I wear Depends plus a Depend Max-Absorbancy pad. Using 4-6 pads daily with 14-20 ounces daily in my pads (this is in addition to amount of urine I am able to pass at the toilet). Very light leakage at night but daytime is a different story. After discussions with my urologist, research, and reading posts here, I have decided to get the AMS 800 artifical sphincter.

My urologist referred me to Dr. Allen F. Morey at UTSouthwestern, Dallas, TX. I met with Dr. Morey and was told he performs 100+ procedures annually. He uses a high sub-muscular placement of the balloon, placing it higher in the abdominal wall.

I decided to get the AMS 800 artifical sphincter because I am tired of the limitations my excessive leakage has placed on my life. Even if this procedure only gets me down to 1 pad a day I will get my life back. I am 73, somewhat active, and want get back to traveling and spending more time in nature.

I think I am set but if anyone has suggestions or tips I would appreciate your input.
Thanks,
Tom

ob66
Posts: 225
Joined: Apr 2010

And after healing I think you will be very happy you went through the procedure. I have had an AMS for 7 years and am a happy camper. But, do not think for a minute that the surgery is a walk in the park. It is not. You will have plum colored testicles the size of grapefruits for the better part of three weeks. You will ask yourself why in the world you did it. But then all will settle down and you will be in love with your AMS and your only worry will be how long it lasts-----the longer it does the less you will remember the original surgery. Simple as that...Good luck. Do it and do not look back.

tpelle
Posts: 184
Joined: Aug 2003

After open prostatectomy at age 71 I had a 2.4 Depends pad per day usage.  Took me ten years to decide on the AMS800 -- with the encouragement of ob66 and others.  The first one lasted seventeen months and then developed a leak in the balloon.  Had it replaced in January 2015 by a different surgeon.  (First one retired)  At my annual checkup she told me that she had placed the balloon beneath the muscle, apparently to protect it somewhat from external pressure or forces.  The first one was placed just beneath the skin within an inch or to the right of the navel.  The first AMS800 worked well until it failed.  And, this second one is doing well at eighteen months.  There is a occasional drip when I sit on an uneven surface, but a very thin Poise liner handles that issue.   Good luck.

TomA43
Posts: 4
Joined: Aug 2016

Thanks to ob66 and tpelle for the info and and encouragement. I am mentally prepared and accept whatever I have to endure post surgery. My focus is on the goal line (getting the unit activated) and whatever happens prior to that is just a part of the journey. I am set for the procedure next Tuesday 8/23.

jimco236
Posts: 10
Joined: Nov 2012

I have an Advance Sling, AUS800 and AMS700.  The AUS was the easiest of the three surgeries for me. I quit using prescribed pain relievers  the day after my surgery and didn't have any of the problems that other posters have mentioned. I haven't had any real problems other than leaks when I sit incorrectly or do stressful work like riding a mower. I would recommend that you go on stool softners a few days before surgery as the stuff used during the operation can lead to constipation.  Good luck on your surgery.

TomA43
Posts: 4
Joined: Aug 2016

jimco236 glad to hear you you got off the pain meds so quickly and thanks for the suggestion. I plan to start stool softener 3 days prior to surgery. I'm sure there will be much learning to do after the unit gets activated.

Josephg
Posts: 167
Joined: Jan 2013

You are making the right decision, in my opinion.

I've listed below some links outlining my detailed experience with the AMS 800 implant procedure and post-surgery fun, in chronological order.

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

I wish you the best of outcomes.

TomA43
Posts: 4
Joined: Aug 2016

Thanks Josephg. I read through your experience before I made my decision. I enjoyed both the information and humor you provided. Your postings really helped me in my decision and I thank you very much for sharing the info.

Josephg
Posts: 167
Joined: Jan 2013

My pleasure, Tom.

I'm very pleased that I could provide value to you.  Many others have, and continue to, provide value to me on my journey, and I am happy to be able to give back to this esteem group, as well as the newcomers.

I with you the best of outcomes on your journey.

Rick_1954
Posts: 4
Joined: Aug 2016

Had the AUS 800 implanted a couple weeks ago. Dr. activated today. Still pretty sore, but first few uses seemed to go well. However, now awake and concerned at 3:30am. Had a big leak after 4hrs of sleep. OMG - hope I made the right choice. I am four years post radiation treatment for PC. Developed urethral stricture and bladder capacity is less than half of pre treatment volume. Advise from experienced guys on this topic would be greatly appreciated.  

jimco236
Posts: 10
Joined: Nov 2012

My doctor waited six weeks before activation. Is it possible that you somehow pressed the deactivation button and didn't notice because you were sore. The booklet from AMS shows you how to activate but I would talk to the doctor or his staff before doing anything.  Good luck.

Josephg
Posts: 167
Joined: Jan 2013

Mmmm.....  My doctor waited 6 weeks, as well.  Strange that you should be activated, while still healing.

Yes, your first step is not to panic (I know, easier said, than done), and second, contact your doctor as soon as possible.  The issue may just be as simple as jimco suggested.

Rick_1954
Posts: 4
Joined: Aug 2016

thanks to jimco and Joseph - I will be calling Dr. at first light. 

Rick_1954
Posts: 4
Joined: Aug 2016

My AUS 800 had a hole in the cuff. Failed within 12 hours of activating. Four days ago I was back in surgery for a revision. Now waiting for a couple weeks to turn it back on to see if it works with a new cuff. Recovering AGAIN.  

So far I'm pretty nervous about this product and the whole process. Surgeon told me this is the second cuff failure he has had this summer. This does not improve confidence.  Prostate Cancer Sucks.  Treatment side effects suck bigger. My solution is to just keep going forward day after day. One step at a time. 

Larry22
Posts: 1
Joined: Mar 2017

I had an AUS 800 installed at Kaiser (total cost, surgury and all: $100!) about 6 months ago and it's working very well, no pads, and rarely wet underwear. For the most part I'm happy. But I'm wondering, am I the only one that can feel the pump rubbing the bottom of the inside of my scrotum? I can feel it at least 60% of the time, and it sometimes hurts. My surgeon told me 3 months ago it would get better, but it hasn't. I didn't see any other posts mentioning this.

jimco236
Posts: 10
Joined: Nov 2012

My sack is packed. In addition to two nuts, I also have a variococele, an AMS800 pump and an AMS700 pump. None of it bothers me unless one of the dogs run into me.

tpelle
Posts: 184
Joined: Aug 2003

Larry, after both the first and second AUS800 implants, I had a low-level pain/feeling in the scrotum.  The first pump sat at the bottom of the scrotum; the second very high-right at the penis level.  At about month 21, I suddenly realized that the pain/feeling was gone.  Told the surgeon the pump had finally settled in.  She said more likely the 75 mg Amitriptyline, later Nortriptyline (anti-depressants) was working.  She advised me to continue the med for a while then try to wean myself off gradually to see if the issue is gone.  The high-pump really bulges out, is very visible and easy to manipulate.  Hope this helps.  tpelle

Josephg
Posts: 167
Joined: Jan 2013

I had some periodic sensitivity along the inside wall of my scrotum, where the AUS800 would rub, for several months after the surgery, but nothing that I would classify as 'pain'.  Inflammation, would probably be more descriptive.  It went away over time, however, in less than one year.  I was very dilligent in following the post-surgery instructions of pulling the pump down several times per day for the first 2 months, in order to achieve proper final placement within the scrotum, following the healing process, and I think that helped.

Larry => $100 out of pocket.  That is outstanding!!!  Mine was $5000+ out of pocket, and I thought that I had decent insurance.  They classified my procedure as 'day surgery', even though I was scheduled to be in the hospital overnight, right from the get-go.  Oh well, insurance companies are not charities.  And, I have my 'normal' life back.  Reasonable trade-off, IMO.

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Joseph - I have read most of your posts here, specifically any regarding the AMS800. I've left replies in a couple threads over the past week, but as yet no one has responded... not one.  Specifically I am facing a ticking time bomb in that I am due to begin SRT, but am still nearly totally incontinent. My Uro has recommended the AMS800, and I have done what research I can on the topic. My concern is that the device must be in place and all "tweaks" completed and TOTALLY HEALED before I begin two months of SRT... and hopefully all this can be accomplished during the period when Lupron is still able to keep my PSA low.

 

Anyway, I was wondering if anyone else here has faced having the AUS placement completed before beginning SRT. I haven't seen much posted on that and the search function on this MB is not the best. Thanks for your time.

 

Josephg
Posts: 167
Joined: Jan 2013

RobLee, I am not sure what you are looking for.

For me, my AUS800 was implanted 5 months before the start of my radiation treatments, and 4 months before the start of my hormone therapy.  I am a layperson, like yourself; but from my standpoint, I did not feel that the two procedures/treatments were spaced too close together.  I was fully healed from the AUS800 implant procedure, well before I started the radiation treatments.  I was young-ish, and I was quite fit, physically; so perhaps, that was a plus in my recovery rate, after the first procedure.

I can tell you that it (the radiation therapy) was not planned, at the time that I decided to have the AUS800 implant procedure.  But, after the AUS800 implant, I was advised by my Oncologist team, after my next PSA reading, that the recommended next step on my journey with PCa was a combination of radiation and hormone therapy, sooner than later.  I thought about it, and I took their recommendation.

I wish you the best of success on your journey.

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Thanks, Joseph. Your posts have been very informative regarding the implant surgery and living with the device. In my case, it appears to be something that I need to have done, or possibly live the rest of my life incontinent. Basically, I was scheduled to start SRT this month, however, my RO recommended waiting until the incontinence improves. Then my Urologist recently informed me that it is highly unlikely that will happen, and referred me to a prosthetic urologist for getting the implant. I did as much research as possible and know that the AMS800 has a 25% revision rate... much related to cuff and reservoir sizing and placement, as well as outright mechanical failure. That's 1 in 4. Then, once SRT begins, any further healing is frozen. No more healing. So I need to be sure that the device is functioning properly and optimally before I proceed with the SRT. Your experience of five months - minus the 6-8 week post-op period before activation, gives me over 15 weeks of "field testing" to become confident that the device as implanted will be durable.. and proceed with the SRT. Sounds adequate to me.

Perhaps I may put together a top level post, introducing myself, and maybe seeking more experience of others. But I'm pretty sure that I need to just go ahead and do this. I plan to present this timeline to the RO next week, and as I said, hopefully HT will keep my PSA will remain in the <.1 range until the AUS gets settled in and RT can begin. Thanks for your info.

 

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