I had symptoms of BPH (Benign Prostate Hyperplasia) for about 40 years following a motorcycle accident that focused blunt force trauma to my groin. DRE (Digital Rectal Examination) never revealed any other symptoms.
I began PSA testing in 1998. I always had an elevated level 3.8-4.0. I feared a biopsy, needles up my butt was not my idea of fun and constantly put off having the test. (Note: I'd do the biopsy daily if I could avoid the MRI.) When my PSA moved up to 4.3, I resisted further investigation for about 6 months while I had my Urologist investigate the possibility of an infection. Finally, I bit the bullet and had the test.
Seven of the twelve core samples turned up cancerous (February 28,'08). I had already scheduled a good-bye tour of distant friends so I didn't get the "talk" until mid-March. My prostate was about twice the normal size making me a weak candidate for beam therapy and a non-candidate for seed therapy. So, I opted for laparoscopic radical prostatectomy to preserve the nerves and improve my long term prospects for urinary control. My heart failed about three years ago and pumps at about 50%. They almost lost me the night after surgery. My heart was too burdened to fight the drugs and just started to quit. I was so mellow that I didn't have the sense to suggest they re-check it in the morning. So, some running around later, and no chrome spike to the heart, I rallied and here I am.
The eight weeks before surgery, I worked hard and lost 30 pounds. Surgery was aided by this and I was done in 3.5 hours. I learned that the cancer had breached the prostate wall but that the margins were clear. That means the horse had left the barn but had not appeared in any surrounding fields. Horses do that I guess. The pathology showed that my prostate was riddled with cancer, the Gleason was upped to 7 but I never learned the Staging. What difference, you make it or you don't. I would have preferred the latter and advised the surgeons not to administer ANY heroic efforts. That's just me. I've never been real upbeat.
So, I live with the catheter for 10 days, mow the lawn and build a tree house for my youngest (11) filling my big bag, which I strap over my pant leg with the cuff rolled up, with blood and urine. That travel bag isn't worth much. No harm done but do take it easy. That's not to hard to do since the lawn won't need mowing for another 5 days anyway. Basically, I conduct life as usual and pass out every now and then. It works for me.
So they had me a Maxi pad and 4 100mg Viagra and send me on my way. Having been very sexually active, I have no idea what I'm supposed to do with Viagra or what it is supposed to do with me. I've tried it; I get a headache. Nonetheless, from day one I achieve 50% erection. Even with the catheter in. That is how it has remained. From day one, I have had continual incontinence and that is how it has remained. I feel no urgency, no flow, no evacuation. I don't feel anything but the warm wet in my crotch. I don't feel my stomach working and still need laxatives for BMs. I never felt any pain from the surgery and have taken none of the medication. I can achieve orgasm but even I'm not interested when there is pee all over the place.
Something of note: I worked hard to overcome dyslexia over my lifetime and was successful at about 50 years old. After the surgery, I couldn't read, couldn't spell, couldn't keyboard, and couldn't do long division math in my head - heck simple adding was hard. I'm getting over that. I think it was a side effect of the drugs or overdoing it. Now in my 7th week, I make fewer mistakes. I see a marked improvement.
Right now, and for the last 7 weeks, I almost wish I hadn't done it. I think I'd prefer death in 5 years than the absence of life for the next 35 years. I am not to get discouraged, they say. But, I feel, one way or the other I will not be wetting my pants after one year.
The following is an unsolicited update to my doctors sent this morning. They were foolish enough to give me their e-mail addresses so I update them every 4 weeks whether they want it or not. My initial update, sent yesterday on 9/20/08, suggested that there was little change from the bleak picture I painted initially as far as my incontinence goes. I sought their encouragement or an indication that it was time to begin fashioning the noose. Over night, things changed rapidly:
Good morning, Dedicated Medical Professionals. The almighty delights in making a fool of me. She laughs so, I enjoy it myself. Like the abused child, I prefer the bad relationship to no relationship at all. In my heart, I believe she loves me. As soon as I messaged you yesterday, things started to change. Three times, while sitting at my computer catching up on a week's worth of e-mail (I was camping, 'memba), I got up slowly, made my way to the bathroom and was able to pee. No great sensation but the longest run of guessing right I've had. The real change came in the night. As usual, I couldn't sleep until the kidneys kinda settled down at about 2:00 AM, after having two good sized bowls of cereal (Honey Nut Cheerios with a little Grape Nuts for fiber - ah, the sugar). Each hour thereafter until 6:30 AM, I was awakened with an urge to pee. I made my way to the bathroom and did, in fact, pee, even felt relief. My diaper was dry enough so I was able to use the same one until the 6:30 event when I had to change it. It wasn't real wet but I was getting tired of it. This miracle was repeated at 8:00 AM and 9:30 AM when I finally decided that additional sleep was not in the cards. I'm still in the 6:30 diaper and feel dry but have probably leaked a little (by my standard). [Side note: I woke up at 9:30 feeling so sick that I didn't think I could get out of bed. After laying there a while I got board and, knowing that I feel better when I get up, did so and felt immediately better. What's up with that? Happens every day since the surgery. Coincidence???]
Now, about that ED ... just kidding. My libido has been hard hit by the medication I take to sleep which has been a life long problem. Coupled with the "side effects" of the surgery, I'm not hopeful. My dear wife will have to take a lover. Not to far I hope, as I need her. I took 50 mg of Viagra last night and tried my best. I achieved about a 50% erection, climaxed (not what it used to be but still a good time) and even ejaculated ... lots of pee!! One gentleman at the camp site, who was fully recovered - seems like there are a lot of prostate-less men around - commented that he enjoyed his climaxes more now and it wasn't as messy. Well, I'm not there yet but I'm somewhere.
At the risk of being the almighty's straight man yet again, perhaps I won't be needing to fashion that noose after all. I just know the fun she is going to have with that one but, what can I say, I'm encouraged.
Stay well. Thank you for your help and patience. I'm looking forward to reviewing the PSA tests with you after my Newfoundland trip.
(One can't help thinking, that is when she'll have her next big laugh. It's the perfect set up. How can she pass it up?!?)
August 11, 2008:
Hoping not to jinx things, I appear to be getting better. My long ago healed incisions are starting to itch. Every now and them, my stomach hurts, I woke up hungry yesterday, and I don't need the laxatives anymore. I'm guessing there was some trauma to my abdominal nervous system and it's been resting for 10 weeks.
I even have some feelings of urgency and have been able to pee "normally" a number of times. I'm still in the diapers and more often than not, I don't feel a thing and get wet. But, progress is being made, I believe. The bad news is that new statistics suggest that I will, probably (50%), have a recurrence of the cancer within 5-8 years if not sooner. It all depends on how long the cancer was active and I believe, given the degree of infestation (total), it was there for a long time (because I was afraid to get the biopsy which turned out to be a breeze. God has had a good time with me. At the risk of being presumptuous, I think I've brought her more amusement than anyone for a long, long time.)
I've just had blood drawn for my first follow up PSA. That will be telling and since I'm not feeling sick all the time, I'm optimistic. I hoping the sick feelings were caused by dehydration and malnutrition that may be passed now that things are working more normally. Time will tell.
I'm off on my annual motorcycle tour which will be a challenge given the continuing dependence on diapers, the long hours in the saddle and my tendency to tire easily. If I can't bull through, I'll stop and the boys can stop with me or I'll catch them later. It is what it is.
This is Memorial Day, Monday. Last Friday, I returned from the annual motorcycle tour of Newfoundland, the island gets smaller every year but the friendships grow stronger.
Despite the rather dismal start to my presumed recovery, one never knows, as I enter my 14th week after surgery, I believe I'm gaining some control over incontinence. Points of encouragement:
1 - I used fewer diapers on my two week trip than expected.
2 - I was able to hold my urine while gassing up, getting off the bike, paying and working my way to the men's room where I would deposit some pee that in the past would have just dribbled into my diaper. I'm far from diaper free. I'm still a 24/7 wearer but they are less wet over a longer amount of time.
3 - I am quite good at holding my urine while sleeping although I have to get up about every 1-1.5 hours to pee. Apparently, the odd pain I feel in my gut is what passes for urgency now. learning that allowed me to make the 100 mile car ride from Portland, Maine today without much trouble (except the pain) and get to the bathroom for a long and satisfying urination.
4 - I can usually get about 50% of my urine in the bowl if I am only sitting around and talking or working on the computer. As expected, moving around and doing stuff, even as simple as standing up, still causes significant wetting.
Erectile function is little improved over the last 13 weeks. The doctors are thrilled that an older gentleman can achieve 50% erection at this point but I'd prefer 110%. I experience orgasms but they appear to be declining in intensity. It is a great deal of effort to reach orgasm (I take anti-anxiety medication which contributes to this) and the reward is less enjoyable each time. I'm beginning to loose interest but I'm not yet devastated over that. Maybe I never will be.
I learned on the road that my first follow up PSA test was < 0.01 or 'undetectable'. I'm not heavily invested in my future but it is one less thing to put in the mix at decision times.
Any follow up treatment will be given much more consideration than this initial treatment - when the prostatectomy doesn't get it, things start to get ugly.
Later: I had my first official follow up with my surgeon. He was reassuring and his NP, Jodi, diagnosed a yeast infection I had diagnosed and treated unsuccessfully as diaper rash. Monistat 7, the feminine yeast infection cream, was effective after the first application - no more burning and maddening itching. Regardless, I will not continue my follow up appointments as it appears to be no convincing cost-benefit argument. I'll track my PSA with my GP and if I spot a rise, I will contact the appropriate medical personnel. I have a high insurance co-pay for visits to a specialist so I'm not recommending that everyone follow my example.
I had the presence of mind, finally, to obtain my pathology report. Here's the details of my situation:Prostate gland and seminal vesicles, radical prostatectomy:
A. Prostatic adenocarcinoma, Gleason score 7 (3+4).
B. High grade prostatic intraepithelial neoplasia.
C. Begnigh prostatic hyperplasia
D. Unremarkable seminal vesicles
Note: The carcinoma involves both lobes of the prostate gland. Approximately 10% of the prostate gland is involved by tumor. Extraprostatic extension of tumor is present ... Perineural invasion is present. The seminal vesicles are free of tumor. The margins are free of carcinoma.
The pathologic stage is: Primary tumor (pT): pT3a: Extraprostatic extension.
The prostate gland with attached seminal vesicles and portions of vas deferentia weighed 60 grams.
The prostate gland measured 5.5 x 4.4 x 5 cm (about 2.25 x 1.85 x 2 inches) - [It appears that over time a nut can turn into a fruit; a walnut into a Clementine. - db].
After 21 weeks I feel I've been deluding myself. Circumstances have lent credibility to progress but when circumstances return to normal - I'm back at my usual tasks - incontinence is a persistent inconvenience. I am still experiencing continual incontinence. When I sleep there is still some degree of control and I don't always dribble all over the bathroom after I shower. That is progress but the progress has not continued. I appear to have reached a recovery plateau.
I still do not feel hunger very often nor do I get thirsty. However, this is not the blessing one might suppose. Without fluid, I am less wet, but subject to bleeding ulcers and damaged kidneys. Nothing that a little extra fluid can't fix and I am back to drinking as much as I can remember to. The ulcers are healing and my urine is clear again. So, do try to get comfortable by not drinking too much. Drink all you want and just keep changing those diapers.
These are no longer early days. I'm coming up on 6 months. I would suggest that either the good Dr. Wagner at Beth Israel in Boston, erred in some way, or the disease was not as described. I firmly believe that people are pretty much the same. Only the afflictions vary. I doubt my composition is so alien that what was presented as a perfect prostatectomy should take this rare and unusual course. Of course, a perfect prostatectomy probably only means that the prostate is definitely gone!
Check with the nearest hospital support group to get the inside scoop on your doctor's success/failure rate. [Two Yana members claim to keep details of the best surgeons - go to RESOURCES and page down] Too late I learned that my local support group had one other man who had been to Dr. Wagner. He was suffering the same continual incontinence that I do. Coincidence? Maybe.
The below is my 6 month update to my surgeon followed by his reply:
It is 6 months now since the day my diseased prostate was excised. I am still plagued by near continual incontinence. But, my coping skills are much improved and I've learned to tuck my penis between my legs when I sit so as to cut the flow of urine. There is little to no sensation of urgency, flow, or evacuation and as I grow accustomed to life in wet diapers, I tend to overlook the sense of wetness often with embarrassing results. I am best when prone, when I do experience a small sense of urgency that awakens me. My sphincter is strong enough to keep me from wetting the floor or the toilet seat but the urine already past the sphincter does leak out into the diaper when I arise. I can usually make it through the night with a single diaper soiled only by the slight leakage mentioned from a few trips to the bathroom. I continue half-heartedly and sporadically with the Kegel exercises.
What are reasonable expectations? It is very disheartening to Kegel over months with little or no associated improvement. Are Kegelling's benefits realized over months? Years? Certainly, not decades!
What do you think we are looking at here? A slow recovery or a stalled recovery? Is it time to consider alternative options?
Erectile function is improving with the aid of Viagra; to what degree is difficult to say. I doubt I can yet achieve penetration but it is now recognizable that I suffer from Peyronies suggesting increased rigidity. I'm still at about "half mast" but with additional length and firmness.
FYI: I received a Pacemaker/ICD implant on 10/30/08 and a re-implant on 10/31/08.
Reply: Yes this would be considered a slow recovery, not all is lost, just slow. try to re-invest your time in Keigel excercises which I recommend through at least year 1. alternative options (male sling or artificial sphincter) only considered after one year your erectile recovery is also encouraging and as you know that can take 2 years even with Viagra etc.
I admit, I went into the surgery very casually. The statistics looks favorable. But, I have learned, as I wrote to my brother:
"I've noticed so much more about the side effects, that don't show up anywhere, that suggest that going through the surgery is nothing to be take lightly. As I talk to others that suffer from incontinence or ED or both, inside all are diminished/ruined men with a loss of esteem. Dumb, I know. But it's huge when you are in it and the medically recommended alternative implants do not replace the hormones that drive lust and desire, the very spirit of masculinity and maybe life itself.
"I am coining, or perhaps re-coining, the term, "Love Nut" to explain the prostate, and particularly it's absence, due to its common description of being a walnut sized gland and the impact removing it has on your emotions and performance."
A small confession before I relate the happenings of the last few week. In the past, having discovered, if you will allow my Star Wars generation use of the term, the force (small "t"; small "f", no attempt to objectify it by affixing a comprehensible and therefore limiting name must ever be permitted). I have been successful in drawing upon that power for my or my friends benefit; sometime in useful ways to protect and sometime in a harmful way to destroy, and, I admit, sometime just to eliminate the chance of coincidence.
This much and a lot more I have known for decades. However, in the last few weeks, I have focused just on being connected to that which I love and admire so much. To just drift within the currents of the force and avoid manipulation, interaction, or demands. Although incalculably effective there is a price to pay for this channeling of the force: the most frustrating, I can never personally profit or improve my quality of life; neither happiness, wealth, power, nor success can be commanded. I can profit others but not myself. So, there has been a certain selfish disappoint and a feeling that the all knowing is punishing me for pleading and showing my unhappiness, like a child, at being forced to return, to this existence, low those many years ago. Cast out much like the biblical deceiver. Trust me, neither of us profits.
But, these connections and driftings within the force have had a remarkable impact on my life, love, happiness and piece of mind. I have benefited and profited directly from a passing acceptance of the messages in these two little books.
Here is my tale:
I have become more and more frustrated with three aspects of my prostatectomy:
the inability to process food without always disgusting and embarrassing results,
the continual incontinence to which my surgeon suggests give it time, and
My surgeon holds out hope for the incontinence and the ED but refuses to respond at all to my questions concerning the explosive diarrhea, lack of appetite, and lack of thirst. Ultimately and on a whim, I took my woes to my General Practitioner, who was unavailable to see me but allowed that I could see the Nurse Practitioner right away. I usually feel if I pay for a doctor I want to see a doctor but, floating in the sea of the force, I agreed to meet with Debbie.
What a surprising delight! I received a very through exam and question and answer period that was unhurried and reflected a real concern for my symptoms. Having reviewed the blood and lab work ordered by my doctor previously, the team that she had assembled agreed that the most likely conclusion was neurological damage incurred during the prostatectomy. A great disappointment to me and one I did not expect but acknowledged in the papers I signed. However, to be sure to rule out all gastrointestinal issues Debbie wanted me to see a gastro specialist, Dr. Wolf, back at Beth Israel, the Lion's Den, where the original surgery was performed. However, sensing my distrust, she added that if I was uncomfortable going back there she would look for someone else that she felt was reliable.
I'm irritated with the poor results I received but I am not at all certain that Dr. Wagner did not do the best job possible and do not think any failings he had would inure to Dr. Wolf in another department. I called the good Dr. Wolf to learn that her calendar was full until mid-May. I was worried as she may have been "the one". But, I advised Debbie of my findings and within 2 days had a second referral to a Beth Israel Gastro specialist, Dr. Kaufman. Gail, who is maybe in her 50s, is not only a marvelous person, she is an exceptional competent and thorough practitioner. We had a wonderful chat where I described the problems I have been having since the prostatectomy and she preformed a, very discreet, and only asking in the most understanding tone if I would be uncomfortable with it, digital rectum exam. Since most of the world has had their fingers up my butt, I was pretty non-plussed and she left the room. I waited and she returned and said, "You're not ready yet". I said, "Oh, I was waiting for you" and dropped my trousers and bent over the table in the usual stance. "Oh, no, no, no", she says, "that's barbaric and dehumanizing. Get up on the table, lie on your left side and cover yourself with this blanket". What a kind hearted and considerate doctor! And, it was a very comfortable way to conduct the exam.
Unfortunately she advised that my anal sphincter had been neurologically damaged by the surgery and that it accounted for some of my symptoms. But, there was surgery that could help but, again, only after she ran a complete battery of tests to identify digestive efficiency, digestive flow, sphincter strength, long term ulcer damage, of which I have had a few, a biopsy of the stomach wall to see if I harbor too much of the bad bacteria and not enough of the good bacteria as well as several other gruesome tests to rule out anything but a neurological cause. If a nerve bundle was cut, she might be able to reattach it. If it is a group of nerve ganglia that are damaged, other alternatives are available. The thing is, that although Dr. Wolf was not available, Dr. Kaufman was available immediately and we bonded and I like this person and I think we will learn what needs to be learned whether it helps me or not. I will be cured or know how to cope. This degree of professionalism focused on making me feel better is a miracle to me that I trace back to the changing attitudes I learned.
All efforts to recover from my erectile dysfunction have failed. Per my surgeon the solutions are time, prayer, Viagra, or the like, coupled with vigorous practice, or "the pump". I have been diligent but no improvement is demonstrable. Quite by chance, at a meeting of other men in my circumstance, some angry and others, like myself, wallowing in self pity and despair, I learned of a Boston clinic that had refined the injection of prostaglandins, a very painful but effective method of creating an erection, by formulating a trimix that included buffers for limiting the pain but permitting the desired effect. I called the next day and asked for an appointment.
It was a two month wait but given the caliber and reputation of this clinic I was happy to wait. The key is that if the penile smooth muscle tissue is not regularly washed in blood, the cell walls harden with plaque and lose their flexibility to perform the sacred and god give function for which man has been so blessed and for which I am forever grateful. This is probably the reason for nocturnal erections. Regardless, on the appointed date, I went to see Dr. Sex, as he is called, and, although the nonchalance of the process was a bit disconcerting, it was effective with minimal pain. (you check in, lie on a table, Terry [Terry Herbert - not me!], a great fellow, comes in a injects you, they leave you for 15-20 minutes, come back test the results with a good squeeze and if successful, deliver the antidote and send you home with a follow up day after next.
Upon returning, as scheduled, and advising that the original test injection being 20 units of mix # 5 caused some pain, we opted to test a smaller dose of mix #7. The key being to identify the smallest injection needed to achieve a viable and useful erection with minimal pain. 5 units of mix #7 had only cosmetically appealing results (I was big and puffy but not hard). 15 more units made no difference but there was no pain. Mix #7 has half the prostaglandins - the painful but effective stuff.
We settled on a prescription for mix #5 starting at 5 units with the freedom to gradually increase the units until the desired effect was achieved. I paid for my prescription, which is custom formulated and sent to the house, got a bag of needles and, presto, a solution that promotes the healing process, can be permanent, if needed, but does not preclude implants, if necessary. I was happy. I have a plan B and a plan C and I know plan A works. And all over two or three days. The force clearly appears to be guiding my good fortune. 7 units of Mix #5 probided an afternoon of delight for my wife but, due to other medication I take no happy ending for me. I have faith that will be addressed in the near future also.
While putting on my coat to leave Dr. Sex's office, happy with the ease and efficacy of my results, I was interrupted by Dr. Sex, showing uncommon concern for a patient, who rushed out to tell me that Dr. Ng, the incontinence specialist, down the hall, may very well have a cancellation today and if I could wait 15 minutes to confirm that, I could take that appointment if it became available. Time I have, so I felt this was an opportunity provided by the force and I waited. Although, I knew of Dr. Ng from my first visit to Dr. Sex, I had made no commitment to pursue the incontinence at this time hoping for nature to provide a cure. Nonetheless, the patient did not show and I was asked if I wanted the testing, testing that my own surgeon had said was necessary but had yet to schedule. I trusted in the force and agreed.
Soon, I'm whisked to the other end of the building by a charming and beautiful nurse, which, I admit, I enjoyed a great deal. I will not insult you with the details as I have sufficiently accomplished that above but my bladder was forcibly emptied, catheters were inserted in several places and hooked to a machine while at the other end they tapped over my most sensitive regions, all with the good humor, respect, and companionship of my lovely nurse. Then enter a second nurse, laughing but defending herself by assuring me that it was my ribald patter that was amusing her. She assisted my first nurse to get me off the table, stand it upright, guide me onto two springy but apparently strong foot pads that appeared at the base of the table and Velcroed me in as in preparation for The Gravatron circus ride.
I was then elevated, table and all, vertically so that my taped nether regions were at eye level and a gigantic crescent X-ray machine was aimed at my bladder. Two screens faced me both showing what I soon discerned were my hip joints, my bladder, urethra and Mr. Winkie, who was not at all as impressive as I would have hoped. Enter Dr. Ng and an assistant learning the ropes. Dr. Ng is a tall, thin, almond eyed, long haired brunet with a capturing smile, easy way, and an ample bust. She can do anything she wants to me!
My bladder was filled, it showed up black on the monitors. I was asked to cough and little comments about this and that were made and explained. When I was relatively uncomfortable, I was asked to empty my bladder as usually. However, this is easier said then done as I am not usually all taped up there with a swizzle stick stuck in for comic relief. With effort and a little privacy (would you like the water to be running? - how sweet - I'm in love again. This time with an entire team, even the guy!) I accomplished the task. Everybody was happy.
The good news, my bladder is a good size, if not Dr. Ng would have to make it bigger. The bad news, my first sphincter, the one above the prostate, is gone. Not unusual, I'm told. The second sphincter, the one below the prostate, was badly damaged and not likely to ever function properly again. I had a sinking feeling.
I was lowered, tubes removed, cloths put on and asked to wait for a consultation in Room 2. Moments after entering Room 2, assistant doctor sticks his head in and asks if I have a few more minutes, they'd like to do one more exam. Time I have. It's a go as far as I'm concerned. But I soon learn that this is the one where the doctors visually inspect the bladder and the urethra.
Mr. Winkie is filled with Lidocaine using an éclair filler type instrument. And, I wait. I wait a long time and I'm thinking maybe spontaneity is not good for me. I decide to wait until the lights go out but only realize later that they already are. But, I am not forgotten, after a while the team returns all apologies, maybe the other customer showed up, and happy because I must be quite numb by now. Either that or it's totally worn off, I think. And one of the sweet nurses comes in carrying an optical machine concerning which I can only exclaim, "What to heck is that". Well, that's what they make their observations with. It's about 2 feet long with small optics at one end, small like bigger than a number two pencil but smaller than a watermelon, and large optics at the other end not dissimilar to those on binoculars. Up it goes relatively painlessly and I am asked to exercise my sphincter. Everyone is happy that there is some activity and crowds around for a look. Great harrahs when they discover that the reconnection of the urethra is perfect, no scar tissue at all. This is important because if there was scar tissue, Dr. Ng would have to remove it.
I'm a star! I'm asked to get cleaned up, dressed and go to Room 2, again, for the consultation. This time Dr. Ng, just the nicest person, and I discuss various alternatives all of which I have researched on the web and at support meetings preparing for "that" day but not knowing it would be "this" day. Dr. Ng and I are on the same page about all the alternatives and the Plan B and C options should the procedure of choice (the latest in incontinence technology, the AdVance Sling, which replaced the Invance sling and has a number of improvements). Dr. Ng, always conscious of the patients feeling and concerns, suggest I think it over and let her know. I say, no. Do it. Dr. Ng immediately set the ball rolling and I expect the surgery will be sometime this month or early March. (Update: it is March 10th and my surgeon stills feels I should wait a year to see if spontaneous healing occurs. It is tempting and not totally out of the realm of possibilities). All this because Dr Sex thought enough of me and Dr. Ng to find out if there was an opening and to learn of a sudden cancellation that lead to what could very well be a cure for my incontinence. Dr. Ng's next schedule opening is in mid-July!
What a change to my life. Just trying to be a little more connected to the force (Source) rather than to manipulate it to achieve a goal. If it is time to rejoin the force than none of this will have mattered and I will be gone soon, or sometime, nonetheless. Except, that I have learned so much more and it has made me happy. People have made me happy. Being alive has made me happy. I am starting over. No baggage. Amazing. And, already, I am imagining ways of helping people from which I might even profit.
My new mantra follows. Thing is, you can't help but feel better only by saying it. No matter how bummed out you are. The true cynic can cynically mouth the words and gain nothing but those of us grasping at any straw of hope will feel just a little better.
I feel good today
I feel healthy today
Later: Boston Medical Center gave me some toys to play with after my visit. One was "The Clamp".
It wasn't long after receiving these gifts that I was back in the hospital for a four hour lab exam. This provided a safe and private place to test the clamp. The clamp is composed of two hinged metal plates about 3/4 of an inch wide and covered with a soft rubber-esque material. In the middle of the bottom plate is a détente that is meant to apply extra pressure to the urethra as it passes down the underside of the penis shaft. Near the hinge, the plates flare out and then run parallel so there is sufficient room to house two 1/2 inch soft foam blocks. At the non-hinged end is a ratcheted spring wire closing/locking mechanism that can be operated by one hand; pinch the spring together and the clamp flips open. Press the halves together and the spring clip locks the halves. There are five ratchet settings. My sample was white man flesh tone colored. I don't know if other colors exist but they should. I have also since learned that the clamp comes in 3 sizes: small, medium and large. My test clamp was medium.
My lab test required lying on a table once every hour for four hours. I applied the clamp after my first lie-down about mid shaft on the penis. I was completely dry and very comfortable. I felt relieved to be free of the diaper feel. However, at my next lie-down I felt a sharp pain at the point of the clamp caused by the pressure of urine in the urethra under the stress of lying down and sitting back up again. Similar pain was felt when sitting. This was not acceptable. So, I repositioned the clamp to the very base of my penis. I remained in complete comfort and completely dry. I also noticed that the occasional scratching or pinching of moving around on the examination table was gone. Gone also was the sharp pain when I my bladder was stressed. I decided to keep the clamp on until I felt the urge to pee. I have not felt the urge to pee since the prostatectomy unless natural urine flow is halted by lying down on sitting on my penis.
I was fine throughout the remainder of the tests. Dry and comfortable. It was a fine day, maybe 38 degrees Fahrenheit and clear, so I decided to see how the clamp performed on the 3.2 mile walk back to the train. I was short of time and had to keep a "race pace" through traffic and lights the whole way. I made it in 59 minutes. Not my best time but with time to spare for the train. At this point, I felt a slight dull pain at the base of my penis and rather then ignore it, my penis having made most of my life decisions, I went to the men's room to check things out. Even after a strenuous walk, up hills and stairs, jogging some across large intersections, I was still completely dry. How pleasant. Unfortunately, my penis was nearly frozen. It was a deathly white in color and had lost all feeling. I removed the clamp and slipped on an extra pair of diapers. It was at this point that I wondered if there might different sizes. With the model I used, I could ONLY use the first locking position suggesting that I was very special or that sizes existed. Later research proved they do.
If a proper size could be found, the clamp appears to be a very convenient and comfortable way to address incontinence. However, fit is the key. My experience suggests that "large" would have to be considerably larger than "medium" to accommodate me in a safe way; say, about twice as big. That bulk might make it less discreet and less comfortable. The clamp, therefore, although a very convenient and comfortable solution, may not be for everybody. On the other hand, considering its re-usability, comfort and effectiveness, it is a very cheap alternative to diapers with little to no risk of leakage even during quite active pursuits.
I also had the opportunity to engage in an extended two day test of the Texas Catheter.
Officially known as a Male External Catheter, the Texas catheter is a a specially formed non-latex condom with a funnel shaped top to receive the head of the penis and a sticky tube that rolls down the shaft like a standard condom forming a strong, waterproof seal. The funnel opening of the head connects to a tube that runs down your leg to a small but adequate bag secured to your calf. To "go to the bathroom", you lift the pant leg, put you foot on the edge of a toiled and flip the bottom valve open draining the contents. The unit comes in four or five sizes from small to extra large and costs about $1.50 per "condom".
It is extremely conformable since you are never sitting in wet or worried about leaking in your trouser seat. It appears ideally suited to the continual incontinent since, if your are trying to train yourself to feel the urge, you must unglue yourself, pee, and replace with a fresh device. The tube and bag are washable. I spent a day in court and on the highway with no worries or problems save for a tube disconnect during the evening.
Note to self: Make sure the connections are secure at the beginning of each day. Each condom device can only be worn for 24 hours to minimize urinary infection. However, if you are using 6 or more briefs (from Sam's Club - the cheapest I have found 60 medium briefs for $22.95)) daily, you can cut your costs almost in half and greatly increase your comfort. If you've got the cash and know the problem is long term, bulk purchases are available on the web. I tested the Freemon Clear (with kink resistant nozzle) but other brands are available.
This solution will be very obvious in the summer if you wear shorts but during cooler weather or evening events where long pants are required, it's the best I've seen. I'll be having ADvance sling surgery on March 10th to try to solve the problem totally. Until then, I'll use my diapers around the house and for chores and save the remaining samples of the MEC for weekend visits with friends and nights out at a club.
Extra research today proved that the clamp I tried previously comes in three sizes: small; medium; and large. My sample was medium and therefore to small for a fair test. If the large size was less constrictive but still effective it would eliminate the sloshing bag on the leg. However, I still have gut reaction doubts about the long term use of the clamp that I do not have about the Texas catheter.
On day two I made the follow adjustments to try to overcome concerns I had about the release of the glue in the catheter:
I forced the head of my penis as far into the receptacle cone as possible;
I carefully unrolled the condom portion to engage as much of my penis' shaft as possible; and,
I gave it a good squeeze to ensure that the glue adhered to the maximum.
I was comfortable and dry and able to participate in constructing a lake float and several heavy beach tables for next summer's enjoyment. Draining the catch bag was a breeze and could be accomplished in the woods as easily as at the toilet. Once again, the only drawback during day to day activity comes if you are trying to train your sphincter as it's strange to "hold it in" and then just let it go as if peeing your pants. Since I am continuously incontinent, this is not a big issue for me. However, I decided, after the first day, that since I was a guest at a friends house, I'd best return to the tried and true diapers for the night still not trusting the manufacturer's 24 hour claims.
Upon inspection I had noticed that the condom had worked itself up the shaft some, or the shaft had added an inch at the base (sometimes god loves me). The glue seemed well affixed but I worried that with my usual tossing and turning at night I might dislodge either the tubes or the condom portion. This latter concern proved naive since, I noticed as I tried to remove the unit, the glued portion had well affixed itself to my pubic hair and any further movement would certainly have awakened me. I was now between on and off and was forced to continue. Scissors were of little help and in the end, I was forced to pinch as hard as I could at the base of my pubic hairs and just pull. Well, a lesson learned. I passed on the second day trial. Should you choose this method, which I like over diapers, but not the clamp, consider shaving your nether regions. It's a lot less painful and it makes you look bigger!!
After 8 plus months of persistent incontinence, that is continual incontinence (I feel nothing), I have opted for an implant of the AMS AdVance sling. This sling replaces the earlier AMS InVance sling. In the States, such as they are these days, I believe the InVance metal mesh sling that was anchored to the pelvic wall causing some discomfort and pressure for some patients (the thing is pulled tight, really tight.) It is being or has been discontinued in favor of the AdVance sling. Although presented as a treatment for mild incontinence (less than 3 pads a day) anecdotal evidence (the worst in the world) suggests that very satisfactory results have been realized by patients with more sever incontinence. In addition, the AdVance sling, if implanted correctly, does not preclude the implant of an artificial sphincter should it be necessary or penile implants to treat ED. The InVance eliminates these options.
I have spoken personally to two gentlemen who have suffered with continual incontinence for as long as 8 years. They advise that they have been completely dry since the moment they were discharged from the hospital. My doctor, who is gorgeous so she must be telling the truth, confirms that the envelope of applicability for the AdVance sling is being slowly pushed outward and has agreed to try it with me. I do not want the artificial sphincter if I can avoid it. It's just too psychologically (and physically) mechanical and I'm a bit too fragile still. The AdVance sling attaches to tissue, which avoids many of the draw backs of the InVance sling. I believe it can be removed if necessary which was nearly impossible with the InVance once the titanium screws grew into the pelvic wall. A bet a good hammer drill would do it! Since the AdVance is tissue mounted, there is NO heavy lifting or exertion allowed for the first 30 days. Unlike with my prostatectomy, which I didn't feel (and still don't) so I carried on as usual, this caution was made in very absolute terms and I believe I have learned my lesson and will obey. Surgery is scheduled for March 10, 2009.
It sounds like a simple enough procedure. They enter the body in the space between the testicles and the anus. Then, they separate the urethra from the internal part of the penis shaft and sling it in such a way that it provides back pressure sufficient for the damaged sphincter to do it's job. When I feel urgency (If I feel urgency!!!) then a little contraction of the bladder will overcome the back pressure and, whoopee!, I pee.
The down side is that there can be irreparable damage to the rectum, a puncture to the urethra, which ends the procedure, or I could be left with persistent incontinence, which I already have now but is grounds for life termination in my view. Fortunately, there is still the option of inserting the artificial sphincter and even implants for ED. The risks are 1 in a million but I'm batting 1000 on those odds sooo ... I proceed with cautious optimism and the knowledge that there is a Plan B.
Here's how the surgery went. I was uncommonly nervous as I had done no research. Since research, though I would recommend it, had not served me well, I had placed myself in the hands of the almighty and sometimes I don't think the almighty cares that much for me, personally. I was eventually given a large dose of "happy juice" in the OR because I was fretting so and I was able to meet the staff. Just before going out, I asked Dr. Ng to reassure me that this was a good idea, which she did. I just love her and felt better immediately. Next thing I know I'm in recovery, about two hours later. I'm feeling groggy and in no great pain while I'm wheeled to my room for the night with a planed release at about noon the next day. Surgery commenced at about 2:30 PM.
I was catheterized and basically hung out with my room mate who had elected for the Artificial Sphincter. As the anesthesia wore off I began to feel sever pain down my right leg. It was like a severely torn tendon or ligament. It was very limiting. However, I was able to walk around the floor that evening and in fact, my room mate and I had quite a party raiding the fridge and harassing the staff. The morning crew scornfully accused us of having a frat party but the night passed in good fun with good conversation. AT 6:00AM , the catheter was removed and I was allowed to go home as soon as I peed. I drank all the water and juice that was left and by 10:00 AM, I felt the first real urinary urgency to pee since my prostatectomy on 5/23/08. Yahoo, I doddered to the toilet and, standing, because you must pee in a jar to prove your accomplishment, I peed just like a normal person with all the normal sensations associated therewith. And I was dry!
My son collected me at the hospital at about noon and we headed home. Getting into the Hyundai Crossover SUV/Station wagon, was difficult because the pain in my leg was so great. I stopped to treat my boy to lunch for coming to get me and exiting the car was painful and difficult. In the restaurant, I realized that I was leaking again. Was it the strain of getting into and out of the car, I don't know but we had to repeat that exercise three more times before we got home because my pain medicine had been stolen from my drug store and we had to add a stop. No way was I going home without some pain killers and stool softeners. I've learned my lesson.
Eleven days later, I still leak when coughing, sneezing, or during any degree of exertion. When the doctor tells you to take it easy for 6-8 weeks - DO NOTHING!!! The bottom line is that despite the slight leakage, I am 99% dry, the cost of pads is significantly lower, and I continue to do my Kegels to aid the process. If that fails, a re-do is possible and I will consider it. As one gentlemen said any leaking is leaking and it's compromising. Whether it be 12 feet of water or 2000 feet, you are still drowning. I determined that the leg pain is from that part of the procedure when that take a large hooked "needle" and drive it between your scrotum and your leg joint and out the incision they have cut from butt to balls. To this they hook the sling. The do this to both sides. On my left side they didn't hit anything important on my right side they hit a nerve or a tendon or something and your leg is immobilized from the pain. The butt to balls incision doesn't hurt that much. The sutures scratch, and the cut burns some but not bad. After 10 days sitting in a semi firm chair is comfortable to assure that this too will pass.
I now wear 2 feminine pads. One down the center of my undies and one along the left side. I dress to the left and feminine pads are build for a mechanism that doesn't wander around inside their panties as a penis does in ours. I'll start looking for light weight male pads that have the appropriate width. I only leak about a teaspoon to a tablespoon a day now and am completely dry at night, barring coughing or sneezing and can return to sleeping in the nude - no pads, no briefs. Things may even get better but, as promised, I am out of diapers one way or the other before the first year is up.
For those interested, here is a link to a discussion of the procedure as well as footage of the actual surgery. Very enlightening.
Later: There have been recently discovered set backs and a black mood once again descends.
If you watched the video in the link you saw what strength it takes to insert the "needles". Like sewing shoe leather. Doctors with weaker left hands, which is most doctors since only 7% are left handed, have some difficulty inserting their left needle - the patient's right side. Left handed doctors would have trouble on the left side of the patient anyway because their right hands are weaker. (Might be a good reason to pick a burly male urologist to perform this procedure.) My doctor was a lovely lady but I fear her left hand weakness caused her to twist the needle to gain the benefit of her upper arm strength in inserting the left needle. This nicked the tendon on the inside of my right leg making it impossible for me to lift that leg for about a week. The ache persists as I sit here writing two weeks later.
Although I recognized the risk and took to my bed for the first 4-5 days after the hospital, there was no way to avoid the ride home. Entering and exiting a highish seated car required sitting first and pivoting my legs into the vehicle. Since the right leg could not be raised and I hadn't figured all this out yet, I'd secure my left leg in the cockpit and then grab my pants and ease my right leg in beside it. This spreading of the legs stretched the sling and reduced the lift pressure carefully set by the doctor. Since the sling is "anchored" only in the muscle, and stretching it by spreading the legs applies pressure to the sling and tends to pull it free from the muscle, this is not a desirable activity. (I should have had my son lift both my legs into the car for me.) The mechanism is like Velcro hooks on a strap which are intended to grow into the muscle to secure the sling. However, great care must be taken not to engage in any activity that might pull the sling taught and this create a little slack when the tension is released. That little bit of slack from entering and exiting the car was enough to convert a complete success to an almost dry result. I agree with the farmer in the video I sent, any leak is leak and is humiliating, degrading, inconvenient, and emasculating.
I was dry at first but the injuries to the leg and my failure to recognize the process turned a success into a failure. One mini pad a day is less costly that 6 briefs but I'm still wet after all.
I believe that a quick re-adjust the day I recognized the problem, the day after returning from the hospital could have been successful. The longer the sling has to grow into place the more difficult it will be to nudge it back into place. My bet is it could have been an office visit with a little Novocaine. But that a guess. It seems pointless to do a re-do if it could have been addressed by a quick visit. Clearly, an examination with the little up the penis urethra optical instrument will indicate if the almighty has properly explained the course of events. However that may be to late to avoid full surgery again which may not be covered by insurance and therefore out of my range.
I see my lady doctor on April 1. I will explain my findings although my friends think she will not listen - doctors being doctors and all. But, a do-over COULD have been done the day after my release with little effort and one can be done after the healing if she uses the scope and determines that the sling is not shutting the sphincter. If it has not dislodged, I'm stuck with two pads a day unless we go with the sphincter. I believe she favors the artificial sphincter (no left hand strength required) and may balk at the re-do. I might then seek a second opinion from another doctor. I just keep making bad decisions whether I research or not. Either that or I'm a lot sicker than I feel. This IS the medical capital of the WORLD for goodness sake. It's getting tiresome and my wife and I are talking about when to stop and just forget it all until it overtakes me. I still have very little feeling in my abdomen so I cannot tell if I have ulcers, kidney stones, appendicitis, etc. So what am I to do? Let the doctors run my life and be checked by one or the other every other week? Yuck!! Or, just say to heck with it and take my chances like our grandparents did.
I wish I had success to share with you people. Things that would help them make good decisions and get good results. But, not so far. Some would say that two pad a day is better than 6 briefs but to me, an old biker, it's no better that a motorcycle that had two flats and now has one. You are 50% better off but you're still not going anywhere!!
Hang in there.
I saw Dr. Ng on the 1st of April. She was way ahead of me. The procedure for implanting the sling was improved by AMS to fit my suggestion about 6 months BEFORE I had the idea. Anyway, we concluded that the sling probably had not moved. She was willing to check immediately but she HAS to check after 6 weeks and WON'T do any tweaking before then so I saw little reason to run the camera up there any more than necessary. My gut tells me the sling is doing the best it can but that 6 briefs a day is a lot more than it is rated to handle. Only the belted pads can come close to the volume of briefs and 6 is just too much flow.
There is a standard for measuring the strength of the sphincter. Either the sling or a normal sphincter requires a rating of 40. Mine is at 12. Very weak. Of course, that wasn't supposed to happen but ... At that weakness the sling has to take up a lot of the pressure and it can't do it. Not even for lying down now. After the swelling and the healing, I'm back in diapers (briefs) 24/7. However, I only need two a day. I'm out of the deep end of the pool and into a bath tub.
After our consultation we decided to wait until the next appointment, check the positioning and tension of the sling (4 stitches now hold the sling pad to the urethra and one stitch on each end looped over some muscle tissue anchors the end), assuming all is well, we will discuss inserting the cuff (artificial sphincter) and maybe a double cuff but the sling will act to double the efficiency of the cuff, so that might be over kill. Nonetheless, we have agreed - I WANT TO BE DRY.
Dr. Ng has recommended penile implants at the same time. Mostly because the erection doctor (Dr. Sex) really thinks that with no progress after a year there is not likely to be satisfactory progress over the next year. Nerves are strange, like wires, no matter how close they get, the light doesn't go on until they touch and nerves grow very slowly. Does it matter? Mechanical erection vs natural? It doesn't hang the same (the implant is heavier than natures way and Winky is hard but pointing to the floor when standing, straight up when lying on your back and god only knows when assuming the position. Some manual guidance will resolve any problems so what's the big deal?? Don't know. Just the thing I have about being me...
Other thoughts on that however: I have lost about an inch in penis length because of the surgery and the sling (the books say, I can't tell). The AMS 700 Ultrix will/may return that. With the erection injections, it's hard alright but it looks a little thin - could be me remembering something that was never there. It's been so long now. But, the implants all provide extra girth which I understand is more prized than length. I admit, I was already too long for most of my partners and had to be careful not to cause pain especially at the beginning of activity. So, perhaps the length is not as important. But tumescence of the head and glans is missing too. I do like a nice puffy head. And, there are myths and cultural expectations that I must live up to and maybe a few dreams as well. I'll think about the implants. However, you can slice up your groin only so many times before the slicing itself begins to increase risk of complications, failures, and unexpected results . My doctor would rather not go in a third time. AND, I have Peyronies which the implants will cure. I'm leaning towards addressing the whole package. If that fails, there are no more options. Not yet anyway. Feeling has finally returned to my abdomen. Shockingly painfull at first but just the usual feelings you expect now. Take it from me, you are never comfortable with your stomach unless you can't feel it. It's an odd piece of equipment. BUT, since the gut has returned, might not the erections? A little more time? Who knows? I'm so tired of it all.
The substance of the latest two e-mails sent to the hangers-on and those hoping I jump:
July 21 2009 10:00am: Six weeks ago I endured the uncomfortable and mind scrambling surgical implant of a device designed to operate as an artificial urinary sphincter (AMS 800 Urinary Control System), called a "cuff"; the original having been destroyed with the removal of my prostate on May 23, 2008. The device is implanted in a "disabled" mode so the various parts can heal into the surrounding tissue before it is stressed by use. For six weeks it is like having no improvement and I get the fun of the additional pain of the surgery, they go through the "mangina" and the "hernial line" to put the parts in. After the 6 weeks, the unit is activated. In my case on July 17th, 6 weeks to the day from implant. To verify the function, after activation, you are fed water, and I'd bought ice tea, to fill my bladder to see if the cuff would "hold". It did not. Attempts to release it via the manual pump secreted by my right testicle were ineffective even when manipulated by the doctor. After all, she didn't know but that I was too stupid to squeeze the right little balloon in my scrotum. Alas, nothing on demand and yet continual "stress" leakage of major significance, when in the closed mode. A clear loose-loose result. This latter stress part is amusing as to test, they cover the floor with expensive hospital grade newspapers, for all intents and purposes, and then have you jump and dance about in the buff to see if pee dribbles out. Jump and dance it poured, cough it dribbled, clear my throat it dribbled.
Lainie, my lovely wife, burst into tears as she saw me head to the web to order up an industrial sized canister of helium for the "Heaven's Gate Helium Tent and Dino Brown Memorial". The doctor was paralyzed with shock but soon recovered enough to call the manufacturer.
"A kink", he says.
"Your brochure claims kink-less lines", she replies.
"Yes, but I've seen them kink", he says.
After the exchange of a few more choice words from my doctor, we did the fluoroscope because the X-ray machine is across the street and takes for-ev-ah. And, a-ha. A kink.
The unit was re-set to the "deactivated" mode, I crawled back into my diapers to continue my miserable life and a date will be set to re-create the mangina, for a third time, long enough for the old equipment to be totally removed and a new set installed to enjoy for another 6 week heal-in followed, hopefully, by activation and dry jumping and dancing on $50 custom hospital newspapers.
So, I grit my teeth, gently close the helium valve, and store the tent and memorial for that day 6 weeks after the new surgical date is set.
Sometimes god loves me. Sometimes she don't.
July 21, 2009 10:59am We fix this thing next Thursday. I hope they don't mean July 23 but instead July 30. I won't even get the paper work by July 23 but that has happened before. They don't really need it, they have it all.
Honestly, my friends, I don't know how much more of this I can do. It's considered elective because, technically, I can wear diapers and never have sex again without risk to my life (like they have a clue). But, to me it's important even if it's starting to get stupid, never let it be said I had a clue. Nonetheless, it's not like going to Disney every year where it can get boring but you can do it. There is an intellectual, psychological and physical price to be paid every time you go under the knife that is greater for repeats. One of these times that price may be too high. That's assuming I leave the OR in something other than a body bag - another popular alternative to repeat surgery.
And I looked, and behold a pale horse: and his name that sat on him was Death, and Hell followed with him.
I am now two weeks out from the second surgical implant of the AMS 800 artificial sphincter. And, there is some interesting news, some good news, some bad news (as usual) and a "good practise" to share.
Start with the bad: The very shallow second incision at the location of the reservoir site produced an eruption of reservoir and snarled tubing reminiscent of a scene from the original Alien movie. I was sound asleep (for 6 hours partially because it takes longer to take out and put back in and partially because they felt sorry for me and brought me out very slowly. I felt no pain, confusion, dizziness, dry mouth or anything. Their [Dr Ng, Boston Medical Center, and the anaesthesiologist] sincere desire to make this re-do as successful and as comfortable got me the red carpet treatment and I appreciate it!)
However, the stories were pretty scary. Apparently when I had fallen after the first implant I had torn the reservoir out of it's home behind the facia and to a position just under the skin. It had also stretched the tubes sufficiently to allow them to coil twice around the reservoir and kind of knot themselves. It had pulled the pump to the topmost position of my scrotum, which was workable but uncomfortable when riding my motorcycle (important because it is that last vestige of my wild and crazy youth and forms a large portion of my lore - Dino without a bike and/or Dino not riding might be one of the hundreds of last straws I have raised in my various comments above!)
So, the District Manager of AMS being in attendance to live and learn, it seems that I became the side show attraction for the hospital and all the students had to come through, pictures were taken and I expect a journal article will be published. AMS may even make some changes to their design but will certainly strengthen their guidance to surgeons. Yet another contribution to humanity. At this point there have been so many, I'm not sure I'm even proud anymore. I'm know as "The .001 Man" because if there is a chance it will go wrong, it will go wrong for me. This time it was infection and something unknown. I believe a contaminated catheter implanted nasty bacteria in my bladder and I began making beer there and farting CO2 through my penis. That was a hoot. Very painful at first.
I was upset and refused to cooperate and continue with the routine Cipro treatment rather then give a sample and target the bad bugs. Cipro drives me crazy as do screw-ups. However, after 3-4 days the painful hourly extreme urgency had passed and the Cipro was doing its thing. After two weeks white blood cell count was good and pathology on the urine sample showed no bad guys. I'm off antibiotics, yah!
Concurrent with these internal events, there was a thumb print sized (coincidence?) open sore on the head on my penis. It grew for the first 3-4 days then stopped, blistered, shed it skin, bled for 10 days as it gradually healed to a rosy pink spot by my two week check-up. Personally, I think the two are related but it could have been an adhesive burn and I am sensitive to some adhesives (from the 1960s but I'm betting none of that stuff is still being sold to hospitals). The new adhesives have never caused a problem. In addition, there is serious but not emergency irritation on the urethra and around the reservoir that we are hoping rest and time will cure. The reservoir inflammation makes me sore across the lower abdomen when standing or walking and the urethra inflammation restricts urine flow and causes a burning sensation - it's bearable but one worries and should it lead to erosion there could be trouble. Of course, a subsequent abscess at either location would be just the kind of joke god like to pull on me and a real bad thing - perhaps the final straw. That being the case,
The good news: Despite the throngs and the photographers, this re-do was one of the most rigidly controlled in the books. Not a single step was taken that was not consistent with ridged protocol and sterilization was at a maximum including the 5 minute wash of which I know nothing but I guess it's good. The reservoir was moved a bit lower and to a less than ideal spot because of the excessive scare tissue above the bladder left by the prostatectomy. I find it more comfortable relocated but then, just under the skin was an undesirable location and caused it's own unique discomfort.
Hint: After the six week recovery and the unit is activated, for the majority of the time the reservoir is not full, since the fluid is in the pump and cuff, and therefore there would naturally be less discomfort in the real world situation. Despite the other complications, the original location was directly under the seatbelt line for flying or auto and that was uncomfortable as well as worrisome. Nonetheless, the implant appears perfectly installed, the pump is very low in the scrotum and out of the way of sitting and stuff. All in all, a very comfortable job. I hate to be overly optimistic, in fact I distrust optimism altogether, but it looks like, unless I do something dumb like fall again, this thing is going to work and in conjunction with the sling will leave me totally (100%) dry in all circumstances including lifting, coughing, etc. But, of course, I may be pushing it a bit. That said, here a good practise:
As the head of out motorcycle gang, I should be present al what few formal occasions arise. Yesterday, 2 weeks and two days from surgery, was the wedding of one of our younger generation members. I should be there but I didn't want to haul all my meds and diapers and "I'm dieing" stuff to some hotel, pay money not to sleep as we had to share with some who had not made plans in time and yada, yada, yada. So, I decided to stay home. At 9:30 AM, it occurred I could ride the bike the 150 miles to the wedding, make a showing, maybe have the meal and head back home. I threw a clean shirt and a couple of diapers in the trunk of the Goldwing and took off. The irritation to the cuff area was significant after just 4 hours. I turned back in despair until I remembered the little blow up "donut" my wife had used after the birth of our first son. I pulled into my local drug store, filled a prescription, so trip not wasted no matter what, and asked about the donuts. There were not optimistic but lo! at the end of isle 5 there was one left. Blew it up and popped it on the seat and had no urethral discomfort for the 300 mile trip. It was very kind to the scrotum and urethra. But, in all honesty, the pressure points just below the tail bone and across the thighs did not prove it to be the magic, all-day, seat every rider yearns for. But it worked and would work around the house, too. If you find that sitting at home is putting pressure on the urethra at the site of the cuff or if the pump is squeezing your testicles, grab a donut and pull the pressure off. I'll bet you'll heal better and faster and you will definitely feel better. I found that slightly under inflated worked the best otherwise you kind of bobble around on top.
PS: My natural erection has started to improve and I'm closing in on the penetration stage (ya right, but I'm hopeful). I'm also producing pre-seminal fluid again. This comes from the Cowper gland tucked safely out of the way but I had not noticed it before probably because all prior attempts are arousal were complicated by urine leakage. Maybe a good sign and is enough to postpone ED implant surgery. It will give me time to recover and maybe avoid it altogether. I am at about the 15 months from original prostatectomy point.
I went to have the prosthesis activated today and the doctor's staff acted like they'd never seen me before. Totally denied that I had an appointment (previously missed, now or ever) and claimed I'd already had my two follow up visits. I explained that the "first" follow up was actually the second follow up to a failed surgical attempt and that the "second" follow up was actually the first follow up to the subsequent remedial surgical procedure. Like it mattered.
I let go the fact that it was with this exact staff member that together we had reviewed the calendar to find the 6 week date because I thought it should be next week. She was right and 9/11 was the right activation date. It just never got booked. A common mistake probably and I can't even get mad about it after all that has gone wrong.
I was told that my doctor wasn't in but, if there was something that concerned me, the doctor probably would be able to make time for me. I said I was sure she could but that I was going home. And, I did.
I felt very empowered for about two blocks and then the pain of the pump chafing against my right testicle after my 3.6 mile walk to the office reminded me that all was not well in Mudville. Activation is not rocket science and I've been through it several times the first time around. I'm sure I can do it myself when I feel like it. If something goes wrong, there are doctors and hospitals nearby. I don't think it's the end of the world. I am concerned about aforementioned chafing, which is quite painful, and additional, often excruciating, pain around the reservoir, which I feel may have dropped a little bit from its original location and may be interfereing with muscle or nerve action when stressed by walking (no pain today after 7.2 miles) or climbing (hills and looooong stairs ala old Quebec City)
But, I'm afraid, Dr. Ng, on whom I have quite a crush, and I must break up. If you can't trust your partner, find a new partner. A lesson I have paid dearly learning.
As you all know, I was not of the soundest mind set going into all this. The almost two years of stress coupled with the last 16 or so months of raised and then dashed hopes, not because of best efforts that are thwarted by disease but by the frailties of mankind and my bad luck, has just about finished me. I am wasted, done, used up, a husk. I've lost my strength, my passion, my creativity, my potency, my confidence, and, even, my desire to whine about it. I am done. I doubt any positive prospect of implant surgery for the erectile dysfunction and am resigned to the life of a eunuch, which pains me more than all else.
I look forward to my eventual demise while lacking even the inspiration to assist it. I don't want to talk to anyone, I don't want to see anyone, I don't like who I am now, I don't think I liked who I was and I lack, totally, the tools to "reinvent" myself in the face of these challenges and disappointments to approximate a happy and productive person.
I have researched until I have collapsed. I could do most of these surgeries myself!! But, is my life better or even the same. No! It is worse. I may not be dying from cancer but I am not living at all. I am merely alive. Don't misunderstand. I don't think anyone should just let the cancer devour them. Something can and should be done. But, sometimes, I wish I had. Like today. Think about it. Tonight my wife and I could have made love. I could have danced at three weddings, one of them my son's. I could have toured with the bike gang. In a couple of more years I might have been very sick. But, consider, as the last 16 months have played out, emotionally and psychologically, I have become very sick much sooner. What? More drugs? More doctors? Deaden the pain, distract the mind, remove the emotions? No. I am done.
Or, maybe I'm just having another bad day.
Later: Today (9/16/09) I went to Boston Univ. Med Cntr to activate my artificial sphincter (AMS 800) and, hopefully, finally, be dry. No sense beating around the bush, it was an utter and complete failure. It will have to be removed though there is talk, resisted by my doctor, that a repair might be feasible. There are many gory details and my 1/2 hour Activation visit morphed into nearly 7 hours of experimentation, brainstorming, I'm pleased I'm a full member of the team, x-ray upon x-ray, and even some desperation jerry-rigging by the manufacturers rep. All to no avail.
The failure appears to be in the valve system of the pump. The valve is a small stainless rod acting as a plunger that slides in a silicone tube that intersects with the feed from the reservoir. When the pump is pressed hard, the plunger is popped back in the activated position and the line from the reservoir connects directly to the cuff. Fill the reservoir, if you are smart, by pumping the pump and press a little nub and the plunger cuts the flow off and the unit is de-activated.
My doctor was not strong enough to activate the plunger, a bad sign. I tried and was also not strong enough. Remember that the pump is in the scrotum. Squeezing it as hard as you can smarts a bit. A call to the rep obtained the suggestion to try to flex the valve housing a little to free the plunger. There is stuff that hurts in there when that is done so I did it myself as I could move the organic tubes and nerves out of the way. The unit activated! But, I leaked. X-rays showed that no fluid was reaching the cuff. The plunger would not slide far enough to allow unfettered flow of fluid to the cuff. It appeared that the plunger might not let any fluid reach the cuff. The pump however filled giving the impression that all was well. I squeezed the reservoir to force fluid to the cuff but with little results.
The manufacturer's rep came in and worked "the q-tip trick" against the back of the plunger to force it further away from the flow tube. A little like driving a nail through your nut sack. The unit appeared to be fully activated but I was not convinced. We ordered another set of x-rays, or more accurately, mis ordered another set so they needed re-doing, that showed the plunger now perpendicular to the slide, virtually immovable.
I could void easily whether activated or not in this circumstance which meant that I would continue to leak just as always. Nonetheless, we saw no reason not to try to de-activate the unit before sending me home and, loosing a bet, the unit deactivated - we know because the pump is nearly empty of fluid and stays that way meaning the plunger had slipped forward and sealed the reservoir tube - we hope.
It's possible that there is now a small leak and the unit cannot be effectively de-activated. Since the pump works this should only be a problem if I need to be catheterized between now and when the unit is removed.
My doctor is aggressively against a third risky implant or a removal at this time. Her hope is to effect the removal and a new implant either of another AMS 800 or the new sling from Coloplast developed by Dr. Nitti, which has been very successful in tough cases but is still experimental. She recommends that we, at least, consult with Dr. Nitti, formerly in Virginia Beach, where I first heard of him at the beginning of this whole cancer thing, but now in New York at NYU Medical Center. His new sling has proven effective in cases even more sever than mine and my doctor would like his opinion. It may also elevate some of the erosion risk that faces a motorcyclist with my condition.
So, the good news, if there is any, is that I'm going to New York. As Alice said, "Curiouser and curiouser."
I am not yet suicidal but not sure why. Perhaps because of some very wise words from my friend Terry.
Later: I just reviewed the AMS 800 Operating Room Instructions. It is apparent that my doctor is not completely familiar with them. Just because she is the easiest doctor to talk to and includes the patient in the entire process, something I think all doctors should do, doesn't mean she is a good surgeon, I guess.
My wife raised my suspicions and I began reviewing the material given to the patient (useless) but dug deeper and found the good stuff. Clearly, a new doctor is required whether it be the fee for service fellow in NYUMC or a local person. I have studied the instructions and except for the more stringent sterilization requirements, and those just barely more stringent, it is essentially the installation of a new brake system on a car. The lines must be free of air and contaminants and the fluid must be of the proper grade and viscosity. Activation and deactivation trouble shooting instructions are clearly identified as with any good repair manual. My doctor was not aware of any of these trouble shooting techniques and required the manufacturer's rep to walk her through the process and, finally, come to the office and administer them himself (2 out of three, anyway). This brings into question Dr. Ng's awareness of the other critical aspects of the procedure. That's enough for me. As with a car, installing an entire new brake system is tricky and one failure can be chalked up to statistics. But a second failure suggests incompetence or negligence and the need to find a new mechanic. We know Dr. Ng negligently failed to retain the troubleshooting information clearly provided by AMS if she read it at all.
Unfortunately, after a review of the x-rays, I think the manufacturer's rep permanently damaged the valve system. If it is resilient it may still work and I will apply the trouble shooting techniques myself to attempt a salvage. Otherwise, I will need professional assistance to replace the prosthesis or repair the pump. Or, we will remove everything and try the new technology.
There is no question that the "patient intervention" required by the cuff is a constant reminder that you are not a whole man or person. But, it does keep that big wet spot from forming on your pants. A plus. However, the new Coloplast Sling, if it works in severe cases, would remove that intervention and allow a man to force to the very back of his mind that his equipment is not all is was designed to be. Urination would appear "normal". It is a seductive suggestion and may be worth the risk.
Given the financial constraints, I may be visiting the Berkshires instead of NYUMC but if you read the manual, have the tools and, a modicum of dexterity, your wife or neighbor could probably do this work.
Now that I am comfortable with how it all went wrong, there is hope that it could all go right. I am grim but determined. I am depressed and betrayed.
My doctor, Dr. Nitti, had to cancel my 3:30 appointment on Monday October 19, 2009 and so Lainie and I struck out at 4:00 AM to catch the 6:30 Lucky Star bus from South Station. They were great about changing the tickets and off we went.
We then walked the 2.3 miles to the doctor's office (23rd and Lexington, just up Bowery and Park Ave - a nice day for it) and were seen almost right away at about 12:00 noon. After discussions with his beautiful assistant, Dr. Nitti came in and confirmed most of my conclusions and dashed any hopes of attempting the new Coloplast Virtue Incontinence Sling for Men. He says there is no data on it. He doesn't even know if it works the way it should and he was one of the inventors. He implies that, although a good product, it has received more positive hype than it clinically deserves. So, for me it isn't a good option at this time. Coloplast pitches it for those with moderate to severe incontinence - severe is what I have. He thinks that claim is a bit optimistic especially in the light of the lack of any real world data yet. They are selling it as one might the Sham-Wow, on personal testimonial only. It would not be appropriate for me to be a test rat. There just isn't enough known.
He also confirmed that the broken second AMS 800 had to be repaired or replaced. Along with his beautiful assistant, they said we can't just leave it there. Thankfully, if you ask me, since it doesn't really work but it does work better than nothing. I was afraid that might be on the table. Some would quietly tiptoe away and say live with it, I'm sure. He must have sensed my scepticism at his mention of repair and maybe I mentioned something about not being certain which pieces needed repair, or just, perhaps, he reconsidered, because in the end we agreed to pull it out and replace it (That may change once he sees what conditions are inside with both the AMS 800 components and me). That's the best thing, I think. The reservoir is, indeed in the wrong place. He feels moving it might be enough. But, in the light of the potential damage to the valve system resulting from the factory reps use of the que-tip repair method, documented in their literature but unknown to Dr Nitti (cause for alarm?) and the possible failure of the cuff, which might be fixed - as I thought - by repositioning the reservoir, he ended up figuring that a full redo was the safest starting mind set. Do it right once and for all and be done with it. I agree. AMS has come out with a smaller cuff, 3.5 as opposed to the 4 that I now have and that might be indicated. He'll do the remeasuring and all that and see what size is correct. Too tight and you get erosion and atrophy; to loose and you leak. I've scheduled it for December 18, 2009 (so I can go play in Virginia like I do before I die all the time) in NYC and have no idea how I will get back after being all cut up again. We must take it very, very easy this time as I'm in no mood to go through this a fourth time, Fifth if you count the Advance Sling implant in the same area and through incisions in the same parts of the body.
Dr. Nitti sounds like he knows what he is doing - mostly, probably, because he agrees with me. He, anticipated my concerns, acknowledged the accuracy of my research and suggestions, and asked if I wanted a job. Cute. I do tend to obsess and over research although he was genuinely impressed with my repair of the valve post implant. We just don't know if any damage remains. It may be slight at this point, or not, but, if it's there, and it very well could be, it will haunt us in about 6-9 months instead of 10 years, which is the expected life expectancy of the unit.
Even with a system that appears to be functioning improperly, I have been reduced from one soaking wed brief to a single male pad per day. Most people might find this totally acceptable. I just read of a man thrilled with being reduced to 3 pad a day by the AMS 800. Perhaps I am expecting too much. I can live with one pad. I can't lift anything, blow my nose or hike but it's a big improvement over a loaded brief every day. I can, however, pee past the cuff with minimal bladder contraction. That can't be right. And, my favourable experience may be the result of limiting my liquid intake to about 8 ounces a day. That can't be good over the long haul, either. I am now trying to force liquids but can't seem to get more than three glasses a day. I'm researching too much!!!
I have noticed a decrease in the sensitivity of my former/remnant Frenulum (the good sensitive part on the penis) as each surgery takes it's toll. My scrotum burns on the back side and a numbness radiates from there. Dr. Nitti explains it as a nerve reaction, not uncommon, and that it should go away in time. I now receive massages which are very relaxing if not very sexual. More research should be done in this area. Forget Reflexology!! The numbness appears to radiate from the burn line all the way up the shaft to the Glans and Frenulum or what is left of it in we who have been circumcised. With luck, the burning and numbness will abate over time and Winkie will be able to go out and play and have his own fun, too!!
I would appreciate any feedback on this phenomenon that others might have experienced. I could also use any information on how dry to expect to be after a successful AMS 800 implant. I may be chasing a dream and paying off somebody's boat in the process.
FYI: Dr. Nitti has done about 1000 AMS 800 implants. My cherished and adored Dr. Ng has completed about 100. Both should be very competent. But, perhaps Dr. Nitti's extra experience will benefit me. Perhaps, once he gets in there, he will be surprised. After the alien abductions, nothing seems to go right surgically :-)!
On January 15th, I travelled to the offices of Dr. Ng at Boston Univ Med Cntr for the activation of the AMS 800 Dr. Nitti (New York Univ Med Cntr) implanted in me on December 18 2009. This is third AMS 800 implant since spring.
Again, activation was a complete failure. So, it's not the doctors as Dr. Nitti is supposed to be one of the best. It must be me.
The failure can be interpreted two different way since die was not used in the fluid, x-rays could not tell me which of the following occurred.
1. There appears to have been air in the pump bulb - just a guess. With difficulty and by holding the pump up so that gravity would draw fluid against the "hard part" of the pump/valve unit, I may have been able to "activate" it. If so, urination was not impeded whatsoever and a greater failure exists elsewhere in the system. It is worse than when I visited Dr. Nitti with the second implant, which was definitely broken. Dr. Ng was totally unable to achieve an activation but given my stronger fingers, determination, pain tolerance level, and willingness to contort my body on the ultrasound table (while no one happened to be in the room), I did experience a sense of swoosh that might have been an activation (or a rupture?). It was not the solid snap I'm used to and my later experience at the toilet would suggest that the cuff, certainly, had not received sufficient fluid to provide any back pressure. I did feel urgency (this happens more regularly despite the total lack of natural control) and peed simply by relaxing and letting it flow. If I did successfully activate the unit, fluid is not reaching the cuff or that would not happen!
2. No activation was possible because, my guess is, there is air in the pump that prevents sufficient hydrostatic pressure from forming against the activation valve to release it when the bulb is squeezed.
I can feel and hear the swooshing of bubbles when I squeeze and release the pump. I can squeeze the pump totally flat and still not achieve activation. Since air compresses, all the energy designed to move the activation pin is dispersed into compressing the air. Using a sardine can type key opener and winding the pump up from the bottom might work but that is not an option.
I did not attempt the Que-tip activation which I believe would have worked because the AMS representative had concerns about what the air in the system might do. I'm guessing at his feelings as the quote I heard was, "The Q-tip method doesn't work with air". Personally, since the Que-tip simply pushes the valve pin back into the deactivation recess, fluid or air should have no effect. However, rather than take the chance, Dr. Ng recommended against trying that approach and suggested I contact Dr. Nitti.
I contacted Dr. Nitti by e-mail and got a same day response; impressive since my e-mail to him left my machine at 5:45 PM. He felt:
"I suspect that nothing major is wrong. Two things: first I tend to leave the cuff and pump quite empty so as not to have any problems with difficulty voiding. There are a few little tricks to get the pump activated. Second, there have been a number of pumps lately that are just a bit more difficult to activate than usual, just takes a bit of patience. Imaging will not help to determine the problem and even a system with air in it would activate if that was the problem.
"I will be happy to see you whenever you want, just tell me when. I am confident that we will be it going."
Today, I advised Dr. Nitti of my experience just before bed last night as follows:
"Before bed last night I sat to relieve my bladder and thought it wouldn't hurt to retest the activation process.
"I noted that although dimples still exist in the pump bulb, they are more reminiscent of a flat tire than the deactivated unit with which I left your hospital. I gave a couple of gentle squeezes and the pump flexed relatively easily. That flex was accompanied by the "air" sound that Dr. Ng had commented upon earlier in the day. But, in my home, sitting down, was more audible to me. It sounds like a little whoopee cushion. If I were to take a guess, I'd guess the pump bulb is ruptured/punctured or a tube is disconnected.
"The sensation is one of blowing air and fluid into the scrotal sac and then sucking it back into the pump bulb. There is no apparent change in cuff pressure."
Dr. Nitti again responded quickly (on a Saturday!) suggesting that I visit him in NYC at 1:00 PM on Wednesday. I wanted Monday but Monday is a holiday, his offices are closed, and Tuesday I want to vote in a big election here in Massachusetts. So, I'll continue my quest on Wednesday in New York. I expect additional surgery at some point but, with luck, I have it all wrong.
Later: I am dry.
I have just returned from a trip to New York City and a visit to see my new surgeon, Dr. Nitti. Dr. Nitti was, much to my surprise and delight, able to activate the AMS 800 Artificial Sphincter. A test at his office was encouraging and I immediately switched to big boy underwear, with a pad, for the bus ride home. I enjoyed a 20 oz. Vitamin Water on the bus (4 hour ride) and felt considerable urgency by the time I had rendezvoused with my wife, Lainie, in Boston and made the 45 minute trip home. I have a slight cold and blew my nose once - death to incontinence because of the unusual amount of pressure it places on the bladder.
At home I checked my pad - totally dry. I went to the potty like a big boy and with a few pumps of the pump, I was peeing like a normal human being.
I believe the nightmare of continuous incontinence is over.
Dr. Nitti did share that it was unthinkable that the pump bulb would rupture and if there was a hole or leak in the system, as I had suggested, it would take about a month to discover. I'd have no way of knowing now. The sole problem seems to have been that our (Dr. Ng and my) prior activation process, regardless of how well intentioned, was ineffective. Dr. Nitti's approach includes a sharp, quick squeeze to activate where I/we have been employing a slow, prolonged hard squeeze. I have to conclude that the activation process responds to the quick application of pressure better that to the slow application of prolonged pressure.
On to the next adventure. ED!!?? With respect to that, in the not quite 2 years (May 23 of 2010 will be 2 years) I am beginning to see an improvement in hardness. Nothing I can do anything with but a definite doubling in firmness. With patience, I may be able to avoid implants - I am not a fan of the pump, which may be very useful and necessary to assure continued blood flow (so I use it) but not very effective for sex, or the injections, which work but just don't seem right and some acclimation may develop where a new mix is occasionally needed - maybe. Regardless, with a failing heart (which is doing MUCH better now, thank you) and a couple of strokes (which I am ignoring but taking my aspirin) under my belt, I'm not sure how patient I can afford to be.
Later Still: Forgive me ... I spoke to soon ... I may be "measurably" drier but I am not dry. Yesterday my activity after activation amounted to walking briskly 4 or 5 blocks in New York City and taking a 4 hour bus ride and a 45 minute car ride. I started that with an empty bladder and consumed 20 oz. of fluid an hour before arriving in Boston therefore 1 3/4 hours before getting to the toilet at home. I was dry as a bone. Pumped the bulb and peed but did have to force the urine out. Things looked good I should have known this was hardly a normal day even for a retired computer hack.
Today, I took a sip of water with my morning medication and another with my vitamin supplements and headed out to the YMCA for my stretch yoga class with the girls. This is a low impact, low stress class most of which is spent lying on your back or stomach extending one leg or the other, one arm or the other, kneeling on hand and knees and arching your back and that sort of thing. It's designed to realign your spine, stretch the large tendons and relax the mind. After this light stretching, the precautionary male pad I had slipped into my shorts (after two years I felt it best to be cautious) was wet. I drank about 10 oz of water and walked 1.5 miles at 2.5 miles an hour, which is well below my 4-6 miles at 3.7 miles per hour, up a treadmill grade of 5. I felt relaxed from my stretching, it was finally doing some good after my third week, and I wanted a light wak to extend that feeling. Why kill yourself just to stay alive?
After all of this, I was wet enough to require a fresh pad. To me, if you are wet, you are wet. Certainly, one brief a day is more convenient that 6. This was the result I acheived from the AMS Advance Sling. Not great but a long shot given the extent of my incontinence. I estimate that two or three pads a day, depending on activity levels, will still be needed now that the AMS 800 is activated. I do not consider this a significant improvement in quality of life. Objectively, it may be equal to a single brief but is encumbered by the inconvenience of changing pads more frequently. Perhaps, I will be able to slep without "protection" but I am not yet convinced of that.
Assuming that all is functioning as it should, my personal opinion would be to think long and hard before enduring the pain and risk of having this procedure performed.
Of course, I'll report to my doctor. Maybe he will reassure me that the AMS 800 takes a while to settle in. I have other issues but I doubt that I will find a doctor to listen or take any further action. For instance, the bulb is very resistant to squeezing. That was not the case with the broken unit that, honestly, performed about as well as this "fixed" unit. Urine flow requires a conscious effort to compress and empty the bladder suggesting that, even with as many as 5 or 6 squeezes of the bulb, the urinary canal is not opening very far. In a normal implant, I have been told that the bulb compresses quite easily, like squeezing a sponge. My own past experience with the AMS 800 confirms this and indicates that one can expect a strong, fast, effortless urine flow. Will anyone care? I doubt it. The stock answer will be, "Most people would be delighted to be as "dry" as you are." Bull sh*t! I appear to be no dryer than I was with a known abused and potentially poor ly implanted unit. For all I know, the prior unit was working fine after I fixed the valve system and the additional pain and expense were directed towards some hospital's bonus plan and a doctor's boat payment.
If this is as good as it gets, as a result of my experience and in my opinion, this technology is no where near capable of delivering the confidence that its physician supporters and the manufacturer promote to the desperate public. Unfortunately, there is no alternative. AMS has a monopoly and when the physicians deviate from the Operating Room Instructions with reckless abandon it is a recipe for disappoint and a vehicle designed primarily to separate the disabled from their money. Consider that, in my case, well over $200,000 US dollars has been charged, the procedure has been performed three times, and I am still wet. Who is being served?
I suggest you follow the money for the answer to that question. My relief and elation was short lived once I dipped a toe in the real world of light yoga and gentle stroll. Just think of the results of building a board walk, rearranging the furniture, shoveling snow, carrying groceries, picking up my grandson, mowing the lawn, repairing the roof, a strenuous walk, a hike up a hill. I drip when I fart. I can feel the leak as I set here at the computer writing you.
I have taken a week to "test" the third AMS 800 implant and have kept a journal of my experiences for Dr. Nitti or whomever.
Simply put, the unit deactivates way too frequently and easily. It activates only with pain, great difficulty and inconvenience and, without any confirmatory feedback. This is totally inconsistent with my experience with prior units and is a strong indication that a problem exists at some level other than the patient.
There is nothing, but time, to confirm that efforts have been successful to reactivate the unit.
The reason for the former (easy deactivation) could be just bad placement or positioning of the unit. But, coupled with the difficulty of reactivating, it appears to be a mechanical failure of some kind. The valve slides one way with ease but resists sliding back. I've seen it a million times on a barn door!! But, as you know, sometimes that's because the door is broken and sometimes it's because it was hung incorrectly. Which it is here is impossible to tell.
More specifically, in the last 7 days, I have had four additional embarrassing unforewarned deactivations where I have publicly wet myself - male pads or no.
Reactivation should be the simple solution, although, honestly, it should not be required after every use. And, it is so difficult, even using the "flex" and squeeze" trouble shooting techniques recommended by AMS, that I must lie down and squeeze as hard as possible to accomplish it. This is painful but usually successful after a few hours. The activation process provides no sense of feedback that the unit has reactivated, as it should. Only time will tell if I must try again. But, eventually, within a hour or so of "silent" activation, I find the pump bulb full of fluid and the unit will be "working", keeping me dry. Given the time and uncertainty, all this usually must wait until bed time and my day is much compromised.
My efforts are confounded by the fact that if I try to focusing solely on pumping the bulb, so as to stay clear of the deactivation button, the entire valve/pump unit slips from my grasp and disappears somewhere internally up beside my penis. It quickly returns, like a confident turtle head, and I begin the process anew. This is not effective and, certainly, not acceptable. It suggests a problem. I wonder if it will be taken seriously.
I have tried to learn a technique that will permit effective use without inadvertent deactivation. So far the best way is to grasp the tubes that enter the valve with my right hand, to stabilize it, and reach over with my left to actuate the pump. This inevitably ends in a wet left hand! AND, is NOT always effective in preventing deactivation. Something is clearly wrong.
Right now, I must wait some time to confirm that deactivation has not occurred after each visit to the mens but if I feel dimples in the pump bulb, even very smalls ones, I will leak. I'm getting quite adept at this detection. Regardless, after urination, rushing to catch a plane/train, collect Durin at school, or leave the confines of a public men's room are out of the question. And, confidence and peace of mind do not exist at any time. I must still carry a satchel of diaper briefs where ever I go. The threat of spontaneous deactivation is not totally gone but I am gaining confidence that the air which caused it has finally isolated itself in a safe place (the reservoir?).
There is no doubt that either the implant procedure produced more errors than the excess air in the system or the manufacturer has, once again, produced a defective product. I can go either way at this point. I know the doctor made mistakes and I know AMS has in the past. I doubt this would happen if the units were manufactured in China and implanted in Thailand! Ever think when we were in high school you'd hear a statement like that? Sad.
AMS says that the air in the reservoir is NOT a problem and will, eventually, work its way out via the semipermeable reservoir wall. I wonder if the doctor knows that and why he didn't tell me. He did tell me not to worry about it like I was some addled brained retard. That's all one can expect these days I guess. Well, turns out he was right so why should I complain? Regardless, I expect that will alter the pressure in the system; maybe for the better, who knows? Certainly, nobody is going to volunteer any really worthwhile information. Regardless, it is cold comfort once again.
Funny thing, having spent so much time working on this and trying to find a solution , I have also found a floating hard mass in my scrotum performing somewhat like a satellite around the pump. I can't get it to do a full orbit, however, as it seems to be attached to the pump or to tissue near it. It may be scar tissue, something left behind during surgery or something more serious. Too many cooks ...
When finally activated to the best degree possible but not necessarily properly, I appear to be dry. But, truthfully, I have not the confidence to apply much stress activity. I can carry a 40lb bag of heating pellets to my stove from the basement - outside access only - and remain dry. The concept seems to work. It's the application that keeps failing.
I am confident that I could be totally dry if I could get my hands on a functioning unit and a surgeon who knew how and where to implant it. Why that is so difficult, I do not know. This is not rocket science. It's organic plumbing!
My journal notes are here in case Dr. Nitti is interested and for your amusement.
Sorry for the long delay in updating. About six months ago I saw Dr. Nitti in NYUMC. He removed the second malfunctioning AMS 800 and implanted a third. After the required 4 (not 6 as in Boston) weeks of healing, I returned to Dr. Ng, whom I adore but I don't think did a very good job on me by comparison to Dr. Nitti, for activation - why travel to NYC for that. However, the unit would not activate. We tried all the tricks (but one - push the deactivate button a few time to loosen it up before attempting to activate!) and nothing. At the end of Dr. Ng's and my own painful struggling, we decided a visit to Dr. Nitti was in order. That occurred a few weeks later and Dr. Nitti WAS able to get the unit to activate.
However, it persistently and, apparently, unprovokedly, deactivated itself often after use. No matter how I tried to be careful, frequently it would deactivate and I'd wet my pants. After a month of this, I was at my wits end because when activated, I was dry. Dry enough to do heavy labor. The only risk came from the type of chair I might choose to use. Some shapes and surfaces compress the artificial sphincter and before the fluid can flow back in to shut the urethra, you're wet. But otherwise, I was remarkably dry. Fortunately, the Urology Conference was coming up in Miami and I beseeched Drs. Ng and Nitti to approach Dr. Bennett, one of the first doctors to implant the AMS 800 way back in the 70's and now the CEO of Lahey Clinics here in Massachusetts with over 3000 implants under his belt, so to speak. He assented to see me and was excited that something terrible was going on so he could fix it. So was I. But, his examination suggested that Dr. Nitti's work was excellent and that there was nothing wrong with my unit. He advise that all his patients use two hands to activate the pump and that by so doing, I would not accidentally deactivate it. It's a little cumbersome but, it does work. Damage a hand and I'm up the creek!!
Dr. Bennett also advised, "You're dry when you think you're dry". I think I'm dry, now.
On the down side, I experience hernia like pain in my left groin - all the cutting and an existing hernia may explain that. I am still wet if I sit in the wrong place, my motorcycle seat being one of those wrong places (I did make the 13,000 mile trip to the Arctic Circle with the aid of male pads), my scrotum burns especially when I lie on my side in bed but actually whenever it is pressed with anything (like my leg). The pain seems to be subsiding and centering on the pump. Perhaps it will go away. On a, marginally, happier note, my ED has subsided some. I can achieve about a 70% erection naturally and once, with the aid of Viagra, achieved penetration and a climax, although my vision was blurry. Nonetheless, it was quite a painful experience, not the ejaculation but the penetration. It was like 30 or 40 needles stabbing me at the base of my penis and the climax produced an ejaculate of urine - a pretty disgusting moment of intimacy. My wife is very forgiving ... but PLEASE! I understand that urine ejaculate is not unusual. [This is known as Climacturia and far from being "not unusual" is very common with some studies estimating that at least half the men have this condition after surgery.]
I am historically depressed. This adventure has done little to ease that depression. I am back on the meds (Celexa now) as I couldn't bear the profound unhappiness, which was progressing to irritability. My family doesn't need that. But, the side effects are: lowered libido, increased ED, and anorgasmia (inability to climax). Next step might be an erectile implant. The warmth, the visual and tactile stimulation, and the friction may overcome the anorgasmia. That might help the depression a bit!
Funny, my father just passed away. He lived 30 years with prostate cancer, which finally killed him when he was nearly 101 years old. Perhaps, I should have just lived with it, too, like he did. He was still sexually active at 100.
Later: I had sex the other day - with the help of Viagra ... but still that's pretty encouraging. No climax 'cuz of the happy pills (Celexa) but exciting and satisfying just the same. Started slowly and there was no pain. AND, I can use my god given sphincter to hold and stop urine flow - for a while before it tires. It's like I'm healing slowly but surely. First my heart and now the good stuff. My heart's not great but it pumps with the strength of a normal person now (a miracle, they say) but it's not to strong or I'm badly out of shape or both. I stumble and get tired but I was able to replace 2 second story windows in 96F heat, with my 13 year old's help, today. I feel a little sick but we did it!! That is a few steps forward!! This year god seems to love me a little bit.
Things continue to improve slowly. I have been able to get off the anti-depression drugs and it is my belief that if they are not successful within the first nine months of a depressing trigger event, they are more harm than good. The payback for bucking up and owning my own feelings is that I can now enjoy orgasms. My erectile function suffered a setback after the third implant of the AMS 800. But, I think I am experiencing a gradual recovery there. It has been a very slow process and I am not expecting a full recovery ... but I am secretly hoping for one. I'm not sure I can emotionally cope with more surgery. I still have numbness on the right hand side of my groin and there is some pain remaining at the base of my penis. BUT, that bruised/numb feeling seems to have passed the other day when the area began to tingle and itch. After massaging it, the itching stopped and the pain was gone. I think some nerves reconnected. That is encouraging since it means my body is still l trying to right itself after all this abuse and time.
I leak a bit more than I would like but in a way it may be a good thing. In bed, it was a worry. That should be my driest position. But, because of the heart, I tend to sleep sitting up a little. Also, I think I experience a bit of tumescence during the night and that is associated with arousal. That nocturnal arousal is keeping blood moving in corpus cavernosa which is important for erectile recovery. Why it disrupts the AMS 800 I'm not sure. Somehow, arousal pushes fluid out of the artificial sphincter and with the passing of tumescence, it takes a short while for the "cuff" to refill with fluid and stop urine flow. It is similar to the urine present during ejaculation, I think, but it could be a separate phenomenon. [Dino is referring here to Climacturia, a fairly common side effect of surgery.] (Ejaculating urine can usually be avoided by voiding all urine, by really pushing, before sexual activity. For me, that seems to be 100% effective.) I also leak a bit when I sit in the wrong chair. My computer chair is such a chair as are hard seats in public places. Therefore, for practical purposes, to be confident, I wear a small male pad that fits in my jockey shorts. I can do very heavy labor and not leak a drop. Sometimes, I leak a little for no apparent reason but, I'm sure, there is one. Somehow, I have compressed the cuff on something and it takes a while for it to refill. I leak on my motorcycle, which means I must carry pads when riding. Not surprising since one is often faced with hard seats when on the road at restaurants and wherever, anyway. So, no big deal. There is a new gel seat for my bike that has, by coincidence I think, a groove down the center that would relieve the pressure on the cuff and reduce leaking. I may try it. Generally, although not as dry as I would like, I am no longer suicidally wet. That is a great relief.
So, take heart. Things do improve over time no matter how bad they seem or are. I'll get slightly closer to normal as time goes by but I doubt I'll ever recover total urinary control or normal sexual activity.
It's been a while. Things have settled down. I have continued to abandon the treatments offered by the tradesmen who are my doctors with great success. My cancer issues are over ... for now. I have not gone back to my surgeon since the day I left his operating theatre. I don't regret it. I have discontinued all anti-depression and anti-anxiety medication and feel great. I decided to take my life back, shuck the side effects, and become responsible for my own feelings. It worked. I cry at commercials and movies ... but only the touching ones. I may not be cured but I feel better, sleep a little better and generally feel like myself. I still take lisinopril for my heart but have cut my metroprolol by 75%. I can now do heavy labor again and play sports. Maybe I'll die sooner but I'm me!
As for the after effects of the surgeries, things are improving. I can achieve an erection sufficient for penetration but it's better with a little Viagra. The normal Missionary position is uncomfortable enough to discourage sex but girl-on-top is very enjoyable ... I wish I'd practised it more in my youth. Personally, in a bed, on the floor, etc is not very satisfying in any position. The weight distribution and pressure is uncomfortable. But in a chair or on a bench (go ahead and laugh) sex is more pleasurable than it ever has been. No pain. For those experienced with equestrian pursuits, with my partner using a jocky "seat" as would occur on a bed or on the floor, there isn't much fun and there can be pain. However, with my partner in a Dressage "seat" able to post and control her movement with her legs, it works very well. Eat your hearts out!!
Speaking of pain ... the artificial sphincter works OK. I have accepted its limitations. I'm not really dry but I can get away with just one-half a male pad a day ... that's a big improvement from 7 brief a day. I cut the pads in half and wear them in my jockey shorts "open" end up. Most days, I don't leak at all. But a sneeze, certain chairs, lifting weight or working in an awkward position and I'll leak a little. Oddly, I still leak at night when lying on my back. Seldom when on my side. If I have inappropriate thoughts about a woman, I'll leak no matter where I am. That's just thoughts, too. If I consider sex with a specific real person ... drip, drip, drip. It's like I'm marking my territory. I also leak after an erection or a partial erection. Unfortunate, unless my bladder is empty, I will still ejaculate some urine, too. This bothers me but not my partner or so she says. [In a MiniPoll conducted in the Yana Forum, half the respondents said that this was not a problem for them.]
All this good news can't hide the bad new that lingers. That is the pain in my groin. Because of the multiple surgeries, I believe, I have a significant amount of scar tissue on the right side of my groin between the base of the penis and my right thigh. It's pretty numb, also ... about a 10 inch strip. It's here that the pump for the artificial sphincter enters the scrotum. My personal feeling is that the tubes that connect the pump to the cuff are just a bit too short. That irritates the region just to the penis side of the numbness and results in a bruised feeling. This feeling presents itself at all times and is especially troublesome when I'm lying down. I find I must move my penis and scrotum out of the way of my legs ease the pain. Since every time I move my package falls back between my legs, it's a constant chore. However, the pain is subsiding and perhaps over time it will vanish. It is the scar tissue that prevents normal Missionary sex, also. Thrusting provides extra extension to the penis. This is a boon to reproduction but puts too much pressure on the base of the penis. The extra extension achieved stretches the scar tissue and makes it feel like it's tearing out. It probably is and if I kept at it, I might gain enough flexibility to overcome this disability. It worked on my knee after surgery so I expect it would work on my groin, too.
So, have faith. Things, every very bad things, tend to get better over time. I wouldn't have believed it but it's true. Thanks to all of you (and Terry & Don specifically), I weathered the worst of the disappointment and doubt. I have a life again so it's been worth it.
Perhaps unrelated to the cancer and its treatment, my testosterone levels have slowly declined over the last three years. Now resting at 357, they are just above the "normal" threshold (300-1000). Due to the previous diagnosis of prostate cancer, no replacement treatment is being recommended by my primary care physician.
After three years and four surgeries for incontinence, my natural sphincter appears to be regenerating enough so that I can control flow. I could not yet approach dry without the help of the artificial sphincter but things are definitely much better than the doctors predicted. Perhaps without the crutch of the implant, I would have worked harder at strengthening my sphincter and I would be truly dry. It's so hard to tell ...
Things continue to improve slowly. This has come as a surprise as my various doctors had pretty much given up hope. However, several days ago I was able achieve a sufficient natural erection so that I could successfully perform sex. Several days later, I went the entire day without a urinary pad or any urinary leaking. Granted, it was a low effort day but still ... I no longer leak at night, which had been one of the biggest frustrations.
Part of this success might be attributed to the proper underwear. I'm not sure why but modern, form-fitting underwear with a sewn in cup shape to support and accentuate the scrotum and penis totally eliminates night time leakage for me. Cotton versions are best for this use, I think. With an AMS 800, it shouldn't matter. But, ... During the day, and especially while riding a motorcycle, underwear made from high tech sports materials that includes a similar supportive cup seems to work best to control both leakage and comfort. Underarmor makes a good product with styles of varying leg lengths but there are many styles from all kinds of companies on the web that I've tested with varying degrees of success. 2(x)ist makes a style with a pouch for your junk in the front that is very effective, generally very comfortable, and easy to install a pad into if needed but I experienced occasional very sharp pains in my penis shaft (like a needle driven in the side of the shaft) using this model that I could not explain. The pain has occurred with other underwear and may not be an underwear issue. But I seemed to experience the sensation much more frequently with the 2(x)ist model. The classic tity-whities, Y-front jockey shorts do not perform well when compared with similar styles with an extended leg. But, that's just me. The real take away is that support is beneficial both day and night for me.
I should mention that my general outlook has experienced a major turn around. Where I was melancholy, if not morose, for years even before my diagnosis, I now find it difficult to become discouraged about anything. Colors are brighter and crisper despite a decline in my eyesight. Even those in the camera I have had for several years and was previously disappointed with the color seem crisp and pretty. The future looks optimistic despite what I perceive to be the end of liberty if not civilization as we know it. My bike falls over, I drop my helmet, my car needs $2600 in repairs ... all these would have convinced me in the past that god hated me. No more. Perhaps it's age. Perhaps I was sick for a lot longer than I thought. Perhaps it because I've stopped eating wheat or discontinued all my depression meds and most of my heart meds. Perhaps, I needed the self esteem of taking control even if it shortens my life. Or maybe my mind is dulling with age and ignorance, regardless of its source, is, indeed, bliss. Whatever, with each minor setback that seems to chip away at me, I brace myself for the fatigue that precedes the fall into the emotional abyss and ... it never comes. It's thrilling, really. Or it's a very long cycle manic-depression and I must reconcile myself to 66 years of giddy enthusiasm after the preceding years of moody darkness. Oh well ... But, more seriously, I cannot comprehend how I could maintain such dark thoughts as I have in the past for even a moment say nothing about for years and years and years … 45 anyway. How quickly we forget and, more importantly, how fragile even Armageddon really is.
Well, I spoke too soon. Although I still think improved and supportive underwear has made all the difference in addressing the constant, but not debilitating, pain of my many surgeries, I'm not so sure it has helped with incontinence. True, I was dry and achieving good erections for a while, I seems to have reverted to my prior condition. I think that traveling by motorcycle for many miles and many days was the greatest contributing factor. The underwear search was prompted by the desire to be more comfortable on the bike. The side effect of flow control and sustainable erections, however, perhaps, resulted from the abuse one's groin takes when riding. Despite the desirable side effect, I expect I do myself no good subjecting myself to that. It may be time to start thinking about a very special custom seat. Regardless, things HAVE improved as time has passed and I look forward to the improvements, however small, that the next year will bring.
I am approaching the 5 year anniversary of my prostatectomy. PSA remains undetectable. Most of the pain has subsided save for the irritation caused by the AMS 800 artificial sphincter. Even this pain has lessened to an occasional, mild, bruised feeling.
I've lost ground with continence. It's unpredictable and, so, I'm back to pads most of the time.
I have, also, lost ground with ED. I seem to have dropped back to about 80% firm from a previous 95%. Viagra is still very effective and makes up the difference. In my heart I don't believe I'd have either of these deficiencies were it not for the surgery. However, my testosterone has been falling dramatically since the prostatectomy, which may account for the setback in erectile function and be unrelated to the cancer and its treatment.
I am approaching the six year mark. PSA is zero and I believe I can say I'm at a very low risk for recurrence. By most reasonable standards, I'm cured and recovered. However, the real recovery continues in a positive direction. I am stronger, physically, than I have been ... maybe as strong as I was before it all began. Continence continues to improve ... even this many years later and ... although certain seating and riding the motorcycle are still problematic ... an aggressive day at the gym, or ten hours on an airplane, no longer involves noticeable leakage. My attitude has improved in this regard, too, which may help ... as Dr. Barrett said, you are dry if you think you are dry. But the important lesson is that the healing, of the severely damaged sphincter at least, continues for many, many years ... don't loose hope too quickly.
I'm a year plus into testosterone boosting (was down to 200 now back to about 550) ... I favor the indirect approach and use a medication called Clomid (ClomiPHENE) that tricks the body into thinking it's not making enough estrogen, which it derives from testosterone, so the body responds with elevated testosterone production. This has been successful and my testosterone is at a "normal" level with no apparent threat of stimulating a return of prostate cancer. We will see. However, the benefits in motivation, rational thought, stamina, weight control, and sense of wellness are , I think, worth it.
On the down side, I have excruciating pain in my groin under certain circumstances which seem to involve food and exercise but I can't figure it out. It's debilitating and it's getting worse. This could be totally unrelated to the cancer and incontinence surgeries but it's in that area ... excess scar tissue spasming? A new hernia coincidentally positioned? Pulling from the failed urinary sling treatment? Something new and exciting? I don't know. But, even though it can bring me to my knees, it's not enough to interfere with life's enjoyment.
Today is my is my 6 year anniversary of my prostatectomy. I'm cancer free … at least prostate cancer free. I feel the healing is completed. It took much longer than I expected. I believe things have level out, meaning I don't see any small improvements, about 6 months ago. Most of the pain is gone. In fact, the nerves in my groin seems to have found new connections and the numbness, although not totally gone, is primarily gone. Of greatest interest is the progress with erectile dysfunction. I feel I could perform now without chemical support and have upon occasion. But, it's a better experience all around if I take a Viagra. At least I'm a man, again, if not the man I used to be. Incontinence is still a puzzle … there will be weeks of dry followed by a series of "accidents". I expect I'm where I will be with that now … but I can't ID the reason for the difference. I believe it could come down to general health, fatigue, exercise level, or specific foods. I'll keep thinking about it and trying to get better. Right now, the simpler the diet and lifestyle the dryer I seem to be … thankfully I'm not a foodie and a "boring" diet is just fine with me even if it's not impacting the incontinence.
Just passed the 6 year anniversary of my prostatectomy. PSA is still undetectable ... I'm well out of the woods, I believe. Incontinence and ED continued to improve over the year but very very slightly. Looks like I'm pretty much where I'm going to be in that department. It's really amazing how the body continues to heal even many years after an "injury"! Thank you, Terry, for talking me off the ledge during those very dark years when I didn't understand this. Testosterone levels plummeted after the prostatectomy. I am in my second year of clomiPHENE treatment. Clomid, as it's called on the street, tricks the pituitary into thinking that estrogen levels are out of balance which sends a call for more testosterone. It's working. T levels are now normal and we are cutting back on the clomid so as not to become dependent. I feel better, that is, I can think and I can work although it's done nothing for my libido or ED (contrary to the pitches one hears on the radio and TV, but, maybe, that's just me).
I appear to be in total remission. ED has not improved much in this the 6th year but maybe a little. Viagra is effective under the right circumstance. Incontinence is still an emotional burden but otherwise not too inconvenient. Even with the artificial sphincter, I must wear a men's guard always. Testosterone levels are still low but respond to ClomiPHENE taken Monday, Wednesday, Friday. There appear to be no ill effects from this treatment, yet.
It's been almost 9 years and I remain cancer free. What a blessing.
My AMS800, however, is losing fluid and I have rapidly (almost overnight) gone from spotting a pad to soaking 2 pads a day. That is better than soaking 7 briefs a day as I experienced prior to the AMS800. But, I have just invested in a package of those briefs as things will only get worse. It's discouraging not only because of so much leaking but because of the prospect of replacing the malfunctioning AMS800 unit. These surgeries tend to go poorly for me. Thank you Terry for teaching me how to cope.
Dino's e-mail address is: durinsbane AT verizon.net (replace "AT" with "@")