RobLee said:

I have tried unsuccessfully

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.

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 said:

AUS

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.

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

Thanks,

Don

RobLee said:

AUS Yet?

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

I'll email you anyway. Thanks for asking!

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.

ElliottDaniel said:

Artificial Urinary sphincter

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

 

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

Hi hrsrdr,

I can provide you with links to my experiences with my first artificial sphincter implant.  These links are in chronological order, and they discuss my experiences with the artificial implant surgery and the post-surgery healing and actual usage aftermath.

It is definitely an extremely positive game changer in your quality of life, if you are currently 100% incontinent.  Like any other surgery, try to get a surgeon who has lots of experience in performing these surgeries.  The positioning on the pump within the scrotum is extremely important for easy and effective use.

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 positive outcomes, if you decide to go forward with an artificial sphincter implant.

jammerpp said:

Thank you for your comments

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.

I had mine placed a year ago and it is the best thing I have had done on my journey of Prostate Cancer. I couldn't wear pads only the pull-up diapers. This wonderful addition of a mechanical sphincter has made my life soooooooo much better.

thanks