My experience is not as rosy as all the ones I have been reading. I was diagnosed in November of 2007. I elected to have the Da Vinci procedure because everything I read was very positive.
I had surgery end of Jan 08. Woke up in terrific pain-nothing was done to control the pain. Sent to room in pain, nothing was done for 6 hours. Finally offered some Vicodin -help but masked the pain. Discharged - in pain. Saw Dr. in 14 days still in a lot of pain. Dr. blew it off as a muscle spasm. Got home still in pain, developed a bacterial infection and a yeast infection. Pain got worse. Could not sit or stand for more that 30 minutes with out having to lay down - lasted for 2 months. Dr. had no explanation. Realized my Dr. either did not care or screwed up and didn't want to admit it.
At month three I tried to play in a golf tournament and had to withdraw due to unbearable pain. Had to stay in bed for 10 days before I could stand up for more that 30 minutes. Decided I had to take charge of my recovery. So soaked in hot tub and ran a strong jet directly on the pelvic floor. Got relief with in a week. Finally got back to normal. Started using a TENS/MS (Transcutaneous electric nerve stimulation/ Multiple Sclerosis) unit at 4-1/2 months for the incontinence. Will let you know how that goes.
At my last post I reported that the pain had ended at about month 4, it didn't it continued for another 6 months. Finally my Internal Med. Doc. gave me a drug called Lyrica, a drug used in diabetics for nerve pain and got complete relief in 48 hours and have been pain free since Oct. 2008.
Had to have an artificial sphincter implanted in December. Finally have some control over the incontinence, and that has helped, still go through 3 or 4 pads a day.
Dr. Fagan, my Austin urologist that did my procedure, obviously did a number on the nerves with his Da Vinci machine.
So I am pain free, thank God, a bit drier, no woodie at all, just playing the ball as it lies.
I am now four years post prostatectomy and am cancer free. Of course that was the goal and at least that has been reached.
In 2009 I had a artificial sphincter implanted and it has reduced my incontinence by 80% which is a real blessing. I still go through about three to four heavy pads a day.
In 2010 I had a penile implant and it works fairly well, but because of the continual leakage, it is not very romantic and that is a buzz kill.
I have moved to the Sun City in Georgetown, Texas and have run into another fellow that had the same doctor and had the same problem of having a stitch impale a nerve, which caused us both a lot of pain until it dissolves. In my case it took ten months and his took a year.
Sometimes I wish I had the radiation treatment - I had four friends that went that route and had only one problem, but it was resolved and they are doing fine in all areas of life. I had three that did the Da Vinci and only one is fairly normal. So based on that limited poll, the radiation seems to be the way to go.
After the surgery, I had constant pain in the urethral area. My Dr., Dr. Randy Fagan, Austin,TX did not seem to want to treat my problem, he dismissed my problem as a muscle spasm. I have since found out, not from Fagan, that the problem was nerve damage, possibly due to a suture snagging a nerve. This went on for about 10 months. I had my annual physical at about month 10 and my Internist was concerned about the pain. He told me to consult another urologist. However in Austin, TX if Fagan does your surgery, no other urologist will treat his patients that have complications - guess Dr. Fagen has a lot of problems post op. Thankfully Dr. Fagan has recently decided to give up doing surgery and just teach the procedure to other Dr. Thank God for that move. Anyway that is just my opinion. Fortunately, I have a friend that is the administrator of a very large clinic in Austin that has a urology dept and I was able to get in to see Dr. Shaw. In the meantime, my Internist, let me try a drug used in diabetics to treat neuropathy, Lyrica. I took it for 7 days before I met with Dr. Shaw. Dr. Shaw confirmed that the problem was probably nerve damage of some kind. The Lyrica must have worked because two days after my visit with Dr. Shaw, the pain disappeared. Yea!!
Since I was incontinent for 10 months, I asked Dr. Shaw if he had someone to do the AUS 800 surgery. His reply was no, that his patients are not incontinent, so he has no need for that service. Bummer-picked wrong Dr. to do my surgery. But he did reccommend a Dr. JONES in San Antonio TX that pioneered the procedure. So off to Dr. Jones. He did the surgery and while it was a bit painful, I had the hope of being dry. After the surgery, I was still 50% incontinent - Dr. Jones said that was all he could do, since he put in the smallest cuff available at the time. I was now using 6 heavy pads a day after the surgery. Since then I have been reading fourums re: the AUS 800 and found that there was something wrong with my device. So I contacted Dr. Kansas in Austin, TX and found that there was a smaller cuff available. So we decided to replace the cuff. After surgery, I am now completely incontinent, the surgery did not work and acutally made the situation worse. So after further research, I have discovered that the device I have implanted must be defective. So I am going to contact Dr. Kansas and see about completely replacing the device and starting from the beginning. [I have suggested to Jim that he conact Dino Brown who seems to have won a battle with medical people and his implant]
Wish me luck. I will post after I find out the next step.
On June 16, 2012 I completed my 4th post prostatectomy surgery. I had to have an AMS 800 device implanted to control my incontinence. So I went to Dr. Bryan Kansas in Austin, TX for help. He put in a smaller cuff in the same spot on the urethra and that did not work either. So 3 months later he decided to replace the device completely. We will see if that works in 4 more weeks when we turn it on.
I finally found a Urologist that had compassion and replaced my AS 800 with a new one and located the widest part of my urethra. Dr. Brian Kansas in Austin, TX is just awesome. He promised me he would get me dry and he did. Now I can work, play golf and have no more leakage than before Dr. Fagan ripped me a new one. I change pads just once a day and probably would not need one at all, but don't want to be that cocky. If anyone is considering the AS 800 see Dr. Kansas. He will take care of you.
Since my last post I have not had any new developments. The AS800 that Dr. Kansas implanted is working better than my old sphincter. I have very light leakage and I am as good as new. Nothing like being dry.
I had an AUS 800 replaced in May 2013, it exceptionally well for two years and then I noticed it had started to stop working and in two months it was done. Went to Dr. Kansas, got scoped and he confirmed the cuff was not closing off the urethra. So we scheduled the 4th surgery. During the surgery to replace the device, he nicked my urethra and had to stop the surgery. He put me on an indwelling catheter for 3 weeks and scheduled a follow up visit on June 20th. I have had urethritis continually until the first of June, also experienced bladder spasms that hurt like hell during this time. So I will see what the next step is today. Stay tuned.
It is now July of 2016. I had a new AMS 800 implanted in August 2016, this is my 4 device. The new device was activated the end of September. Once turned on it hurt like hell, seems the Dr. trapped a nerve (probably the only one left that works) between the cuff and urethra. So I turned it off and left it alone for about 2 months. Pads and diapers again. Well over time the problem has pretty much gone away and everything is normal. The cuff works great, barely damp at all at the end of the day. Dr. used a new technique that he is going to write up in the journals. This time he suggested that I turn the cuff off at bedtime and I have been doing that with no problem, just have to remember to turn it back on before I get out of bed. This is supposed to increase the life time of the cuff by about 25%. So I am dry and fingers crossed.
I am convinced that to do it all over again, I would have done the watch and wait option.
It is now August of 2017, the new AMS 800 cuff is working fine. I do have a problem with pain when I play golf. It seems there is a lot of force exerted to the pelvic floor in a golf swing. So I have decided to turn it off when I play. Besides in the Texas heat you don't produce much urine, mostly just sweat when you are outside. I started turning the cuff off at night to try and extend the life of the cuff. I will always have the surgery to replace the cuff every time it fails. It is worth it. So the cuff is one year old, hopefully this one will last a lot longer than the last one (only lasted 2 years). Just a post script. My original surgery required the Dr. to go further outside the gland because my cancer had become very aggressive. So the wait and watch would not have worked for me. This cancer will change your life, but it is better to be rid of it than to let it kill you.
Jim's e-mail address is: jkotrla AT gmail.com (replace "AT" with "@")