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Artificial sphincter

jammerpp
Posts: 8
Joined: Feb 2016

Do I need an artificial sphincter? I had robotic prostrate removal surgery 3 years ago and I am still incontinent.  My suregeon suggest an artifical sphincter but I am not sure if it would be any improvement.  i am currently using the Uriclack clamp and am using one to two pads a day.  Mostily only one but if I am more active I will use two. From what i have read most artificial sphincter recipients still are using pads. Any comments please.

ElliottDaniel's picture
ElliottDaniel
Posts: 5
Joined: Jan 2016

Dear jammerpp,

In my experience, the need for an artificial sphincter (AUS, AMS 800) is dependent upon how severly you are leaking and how much bother the leakage is giving you.  The results of the AUS are dependent upon several factors such as how severely you are leaking, if you have had radiation (XRT) and the experience of your surgeon.  In my experience, at centers of excellence that are high volume centers with extensive experience with the AUS, you should expect at least a 75% chance of being completely dry and ~25% of being markedly better but not quite completely dry. Fortunately, your degree of activitity following surgery is not really a factor in success of the AUS.  In fact, I strongly encourage patients to be as active as possible because the more healthy and active you are, the more healthy your urethra (the tube you urinate through) will be and, subsequently, the better the AUS will work.  You mentioned in your post that "most" AUS recipients are still using pads--this raises a very, very good point.  Mainly, that the results of the AUS are dependant upon the surgeon who implants it.  In my experience and what is published in the medical literature (for example:  Sandhu et al:  The surgical learning curve for artificial urinary sphincter procedure compared to typical surgeon experience) states that unless your surgeon has done at least 200 AUS procedures and ~20-30 per year then they are not going to be as experienced and as skilled to place the AUS successfully.  This is why it is imperative for you to have an open discussion with your surgeon to find out exactly how many AUS he/she has implanted and how many he/she implants per year.  It is in your best interest to seek out the most qualified surgeon to perform your surgery to reduce the complications and to improve the results.  In my experience, an expert surgeon should be able to provide you with very accurate numbers of surgical procedures and "a lot" would not be an acceptable answer.  

I hope this helps.  Please feel free to ask more questions if you have them

Dr. DS Elliott                                                                                                                                                                                                         Mayo Clinic

 

 

jammerpp
Posts: 8
Joined: Feb 2016

Thank you for your comments Dr. Elliot. The surgeon I am consulting is very experienced and has done over a thousand artifical sphincter implants so I am very comfortable with him and his abilities. As I have said i am uncertain if the surgery would be a benefit to me as I am only using one or two pads a day in conjuntion with a Uriclack clamp.

ElliottDaniel's picture
ElliottDaniel
Posts: 5
Joined: Jan 2016

Dear jammerpop,

Thanks for the follow up information!  In my experience, your age should not be factor in the decision making of treating the incontinence or not.  That is, until a first time implant patient is someone over 80 years old ( https://www.auanet.org/university/abstract_detail.cfm?id=MP88-14&meetingID=15NOLA )  Your overall health and the degree of bother you are having should be the guiding factors.  

Also, just out of curiositry, who is your surgeon?  There are only about 3-4 surgeons in the United States and one in the rest of the world who have over a thousand AUS procedures.  You are very fortunate to have a surgeon with that kind of experience!  I'm sure I know who it is since, obviously, the AUS implanters are a very small group and we attend all the same meetings around the world.

Best of luck to you,

Dr. DS Elliott                                                                                                                                                   Mayo Clinic

 

jammerpp
Posts: 8
Joined: Feb 2016

My surgeon is Dr. Siegel and I may have over stated the amount of surgeries he has performed.

ElliottDaniel's picture
ElliottDaniel
Posts: 5
Joined: Jan 2016

Dear jammerpp,

Thank you for the reply--this clarification is very helpful.  With that said, I am not familiar with Dr. Siegel.  And, this illustrates what I am talking about.  There have been many, many studies in surgical journals that show that the success of surgery and reduction of complications is directly proportional to the experience of the surgeon and the medical center.  There is a very nice paper by Dr. Sandhu at Columbia ( http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3646622/ ) which demonstrated that the overwhelming majority of surgeons performing the artificial sphincter actually have very little (~1/year) experience.  I have found in my practice, that ~40% of my artificial sphincter procedures are actually repairing what another surgeon placed incorrectly.  It is natural to assume a surgeon has vast experience, but in reality, most do not--and this is especially true for the artificial sphincter (AUS).   This brings me back to the point that you need to protect yourself and ask your doctor actually how many of these he does.  If it's less than 20-30/year then you need to consider obtaining another opinion from a more experienced surgeon.  By doing this, you will increase the odds of your success and reduce the risk of complications.  Because, at this point, you have already had a complication from your original prostate surgery--meaning the incontinence, and now you don't want to have further avoidable complications with an AUS procedure.   Also, something else to consider when evaluating the experience of your surgeon:  Ask to see their curriculum vitae (resumé)--all academic centers will have this posted on their website.  Don't be afraid to ask for this--afterall, it's your body and you owe it to yourself to have the best possible person operating on you.  If the surgeon is not activily writing and researching the AUS then the odds are they do not implant very many.  In my experience, many patients are afraid to "offend" their surgeon.  It is my opinion, that no patient should be afraid of offending their doctor/surgeon and no surgeon should be angry at any patient who is honestly seeking the best care for themselves.  If a surgeon becomes upset/bothered at a potential patient questioning their surgeon's experience, then that is a major warning sign and the patient should seek another opinion.  

By all means, feel free to contact me back regarding your choice of surgeon--I know all the surgeons accross the US who do acceptable numbers of AUS procedures. Feel free to write back if this raises more questions than it answers!!

Dr. DS Elliott
Mayo Clinic

 

jammerpp
Posts: 8
Joined: Feb 2016

 Dr. Elliot.   As I mentioned i am only using one or two pads a day with the Uriclack clamp. From what I have read on Cancer Survivors Network it is not uncommon for patients that have had the artficial sphincter implant to have to wear one or more pads a day the same as I am doing now. I am also concerned with seeing that some have had to have a second surgery. With that in mind I am inclined to not have the implant surgery.

jammerpp
Posts: 8
Joined: Feb 2016

Dr. Siegels nurse said he does 10 - 12 a year for the past 25 year.

Gunny3043
Posts: 5
Joined: Mar 2017

Dr. Elliott, how do I go about finding an experienced surgeon? My urologist only knew of one surgeon in Orlando who had vast experience however he had retired. Is there a surgeon in the Orlando or east coast of Florida you could recommend? I've been living with pads and clamps for almost two years and I'm

ready to make a change and go for the AUS. Appreciate any help.

Gunny3043
Posts: 5
Joined: Mar 2017

Dr. Elliott, how do I go about finding an experienced surgeon? My urologist only knew of one surgeon in Orlando who had vast experience however he had retired. Is there a surgeon in the Orlando or east coast of Florida you could recommend? I've been living with pads and clamps for almost two years and I'mready to make a change and go for the AUS. Appreciate any help.

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

I have tried unsuccessfully to contact this doctor myself. There are a couple urologists in the Tampa area that do this procedure. Most likely I will be having it implanted in May, and have been leaving questions here on this board for a couple weeks now. This does not seem to be a very busy message board, and it is hard to find information.

Gunny3043
Posts: 5
Joined: Mar 2017

Thanks Rob. I've asked several Doctors who preforms these operations and so far none has given me a sat answer. I had a male sling implanted last

September and I'm still dripping and having to use a clamp along with a pad. A had a hard time after the surgery with a rash on my scrotum that

took about 6 months to clear up and for that reason I'm very reluctand to return to that surgeon for an AUS. He sais he's done them before but I didn't ask how many. Good luck with your operation next month. I'd be interested to know how you make out.

Gunny3043
Posts: 5
Joined: Mar 2017

Earlier you said that might be having the AUS implanted in May, just wondering if you've had it done yet.

If so, please email me at: DevilDogGunny1@gmail.com

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

AUS surgery is a week from Monday... a little scared. No, a LOT scared.

I'll email you anyway. Thanks for asking!

adwhiz
Posts: 9
Joined: Apr 2017

Hi Rob --

I suppose by now you have completed your surgery and your implant is happily waiting to be activated. I had mine done about 2 months ago and believe me, it's a game changer. I was buying Depends by the case at Costco and going through at least 4-5 a day. It was horrible. Now I wear a very small pad that is more for the occasional drip than anything else, and I am thrilled with the outcome. I do hope you'll feel the same way when it's working and you are nearing a more normal way of life.

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

Thanks Whiz. Mine was just activated last Friday.  I'm still getting accustomed to having it working. Sometimes in the bathroom I forget and wonder why nothing's coming out.  It does drip a little... not much, but enough that I wear a light pad even inside my loungewear. But it's never wet, just a few stained spots. Also can feel a little dampness in bed.  But the rewards are truly delightful. Yesterday we went to the beach, swam in the gulf, got in the hot tub, showered in public. It was wonderful to not have to hassle with trying to hide anything.

I have a bit of pain in my groin internally where the tubing that connects to the cuff gets irritated by underwear or sitting on hard seats. Also getting in and out of the car. I am hoping that this will continue to heal as the months go by. Tomorrow I go to the RO for mapping scans and get abdominal markings, then begin SRT in a couple more weeks. Thanks for checking in on me!

Dino_F's picture
Dino_F
Posts: 12
Joined: Mar 2018

Dr.  Elliot,

If you are still following this thread I would be interested in your sugesstion of the most experienced AUS surgeon in the Philadelphia/South Jersey region. I recently used a recommended reconstruction urology specialist  (initials MM) in Philadelphia for a TUIBNC procedure and he said that an AUS would be my next likely step (if I remain open for 3 months.)  I really don't know if that surgeon meets the experiece critera that you mentioned. Although it is much less convenient, I could also return to MSK in New York where I had a salvage radical robotic prostatectomy in August 2017.  Dr. Sandhu, who you quote, is currently affiliated with MSK.

Thanks for your past postings and hoping you can point me in the right direction.

Dino

jammerpp
Posts: 8
Joined: Feb 2016

I should add that I am 72 years old and am concerned about the recovery from the surgery.

Josephg
Posts: 152
Joined: Jan 2013

First, I am not a Doctor, but simply an RP, radiation, hormone, and artificial sphincter patient, who had the AMS 800 inplanted in January 2013.  Unlike yourself, I was completely incontinent post-RP surgery and prior to the implant surgery, so for me, it was truly a gamechanger, restoring my life to normalcy.  You can read my 5 posts describing in detail my before and after experiences for the sphincter surgery, recovery and results over a few pages, starting here: http://csn.cancer.org/node/188931?page=3 - 5 postings

This is an excerpt from one of those postings that you may find of interest:

***Now, my current, post-implant, continence is defined as 'social incontinence'.  That is, it is not the perfect 100% continence that I had prior to prostate removal surgery.  I wear Depends (no pads), and I will always wear Depends (just a personal choice on my part, versus pads).  I do have some very minor leakage into the Depends across a full day.  But, I do not notice it, and it is definitely not an issue whatsoever, in the course of my daily activities.  My surgeon advised me prior to the AMS 800 implant that I would be socially incontinent, by design.  He advised that he would select a cuff size and place it appropriately, so that it would minimize the chances for premature urethral wall thinning under the cuff, and this would minimize the chances of requiring additional surgery for a new cuff and new placement position on the urethra down the road.  This sounded like a good compromise to me, as I do not relish the thought of repeating this surgery, if it can be avoided.

Regarding factors that seem to increase incontinence-related urine flow, caffeine and alcohol definately cause increases, at least for me.  I notice a slight increase in involuntary urine flow through the AMS 800 when I'm drinking a lot of caffeine or consuming alcoholic beverages.  The increase does NOT in any way limit or change my activites, as the Depends easily absorbs the temprorarily increased flow.  Again, not too much different from normal life, where these activities would necessitate an increased frequency of trips to the restroom.

In summary, to those of you who have already gone through the implant surgery and are struggling through post-operative discomfort and general uncertainty, I recommend that you stay the course and follow your surgeon's instructions to the letter.  I am absolutely convinced that you will find tremendous value resulting from the sacrifices that you have already made as a result of your implant surgery and recovery.

To those of you who are currently mired in lifestyle-changing incontinence and are mulling over your options, I propose that the AMS 800 is definitely a game-changer for your consideration.  I recommend that you engage a surgeon who has performed LOTS of AMS 800 implant surgeries.  While all surgeons have to start somewhere to build their vault of experience, I strongly recommend that, to the extent possible, you don't use a novice surgeon for this surgery.***


I trust that this will be helpful to you, and good luck with your eventual decision.

jammerpp
Posts: 8
Joined: Feb 2016

       Josephg.             Thank you for your comments.  This is exactly what I am looking for, comments from men who have had the surgery. How difficult was the surgery and recovery?

Josephg
Posts: 152
Joined: Jan 2013

jammerpp

I don't know if you've had a chance to review my referenced postings in my original reply to you, but in those postings, I go into great detail regarding my experiences with the surgery and recovery.  Let me know if you have any questions, after reviewing my postings.

tpelle
Posts: 184
Joined: Aug 2003

 

My Rad Prostate Surgery was at age 72 followed by ten years of continuing <.01 PSA annual readings but a 2.3 Depends pads per day usage.  At age of 82 I had the AUS800 implanted.   It worked beautifully for 17 months then failed as a result of a pin-hole leak in the balloon. A second AUS800 was implanted 13 months ago and is doing well. The aftermath of both surgeries was manageable, even though I live alone. Both implants provided a near drip-free outcome. I use a “panty” liner which catches an occasional drip i.e. a couple of times per day. The postings by Josephg and others on this site have been most helpful. I don't regret for a moment that I have had the two AUS800 surgeries. tpelle

ksara00
Posts: 2
Joined: Jun 2016

Prostatectomy, radiation, urethral strictures, urethralplasty with oral skin grafts, bladder sphinter muscle failure, male sling implant - long term pain (5 months) and more incontinence. My question is two part, can I have the sling removed and will I be able to have an AUS800 implanted? Thanks for any and all responses!

Josephg
Posts: 152
Joined: Jan 2013

I am not sure that any of us here (non-medical professionals) will be able to give you an authoritative and definitive answer on your questions.  In my opinion, you should consult with medical professionals and obtain at least two independant opinions.  I'm sorry that I cannot be more helpful to you for your particular questions.

ksara00
Posts: 2
Joined: Jun 2016

Finally had the male sling removed after convincing the surgeon something was wrong; the sling tore a hole in the urethra. Now have to wait three months of complete incontinence before AUS surgery. Does this seem like a long recovery time? Does the AUS cuff always go on the same spot on the urethra? 

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

You asked "Does the AUS cuff always go on the same spot on the urethra?" I was told by a urologist who sais he has done these for over 20 years that the placement is up to the surgeon and often depends upon the approach (what incision was used for access). He said the cuff covers 2cm of the urethra. In many cases the only problem over time is tissue erosion... the cuff wears down the section of urethra where it was placed, and then it must be moved, either forward or backward, and can be moved only twice. This is what makes the AUS unsuitable for women because the female urethra is shorter than 2cm. Typically the erosion requires relocation after 8-10 years, so I'm looking at 30 years.

Gunny3043
Posts: 5
Joined: Mar 2017

Rob, I've lost your phone number, can you call me?

Thanks,

Don

 

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

I think we just spoke today. If not, please post again. Otherwise we'll talk next weekend, assuming I remember.

Lupron brain... not sure exactly who I've spoken with or when.

Josephg
Posts: 152
Joined: Jan 2013

In my lay person's opinion, 3 months of waiting between surgical procedures is not an excessive period of time.  The surgery for implanting the AUS is not trivial.  You have multiple incisions, and the surgery causes a fair amount of short term swelling and discomfort.  The surgeon will pick the best cuff size and the best location for the cuff on the urethra, based upon your specific situation.

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