Posted 10/3/2012 4:07 AM (GMT 0)
It's been now a year since I had my AMS800 implanted (surgery was done September 21st 2011), so I'd like to share with you sort of a condensed (not that condensed sometimes) view on my experience with the little toy.
My physical condition - I am posting this in the prostate cancer section as it seems that the AMS topics are more visible here, but I am not a cancer patient. I have myelomeningocele (spina bifida), and I have incontinence since day 1, which is a bit different than some of you, and this might affect a little bit the outcome of the device in certain situations, from what I have learned. Even with the people with spina bifida, each individual is different, so you should check with your doctors if you are elegible for the AMS.
The preparation - I did an extensive search on the subject. First of all, I tried to be sure that it worked and that there was a succesful rate that was good enough (It's over 80% of satisfaction if I'm not wrong). I read many pros and some cons about it, and my old doctor wasn't very keen with the idea, so I moved to another one which happens to be just the best on the subject. In a month, after all the tests, everything was ready to go. I didn't have to do anything else, like a neobladder or something.
The surgery - A breeze. I was expecting something much more complicated, but it was really easy. One night at the hospital only and I was back home. It did hurt a little (of course!), but I'd give it a 5 in a pain scale up to 10. 2 small cuts, no stitches. It did bleed a little for a couple days, but nothing too worrisome. I could manage the pain and the small discomfort with common pills, nothing special. It didn't bloat as I was expecting neither it was too purple, I was waiting for the little guy down there to look much worse. The worst part of the surgery was the 6 weeks waiting for the AMS to be activated.
The outcome:
Amazing. It is really much better than I expected. It's not 100% effective (even a perfect body isn't!), but I'd say it's at least 90% perfect, if not more, most of the time. I still use a very small pad when I'm out, but just as an extra safety measure. At home, during weekends for example, I don't wear it. I have very very very small leaks here and there, and none are due to a faulty device so to speak, it's all because something I did wrong or something I couldn't actually avoid, and it's not something that happens too often to say it's a "fault" of the device. So far, I have never seen a soaked pad, far from that. As some of you might know, it works with a cushion blocking the urine flow. When it leaks, what I think it happens is like a pillow or a piece of foam or some soft material: you push it, it deforms, and it takes some short time to go back to its "original" state, and with the strong pressure inside the bladder, there is some leak until the cushion is back and blocking everything up again. This sometimes happens when I'm sitting in certain surfaces (very few of them, actually), and if I stand up too fast from there the cushion takes a few seconds (very few, 2-3 I guess) to come back to its original state. If I am still doing some muscle contraction (walking too fast, etc.) or some strong movement, or if the bladder is too (and I mean *too*) full, it might leak a bit more than just a couple drops, but the very interesting part is that what is left inside the bladder is still a lot of urine. Before the AMS, when this happened, I had strong and unstoppable leaks. Stand up with a full bladder? I could forget about it, let alone walk without the leg accessories. Now it's just a couple drops, and not all the time.
What I have noticed is that it works better (as if it was possible!) with a fuller bladder. It's kind of explained with a bit of math, I guess: if you have a bladder with say 200ml, when it leaks because of that "fault" of the cushion, let's say it leaks 20ml (I can't tell, these are just random figures). That's 10% of your capacity. If you have a bladder that holds say 600ml, a 20ml leak is minimal, mostly because this is what it will leak, nothing more, and 580ml will still stay there.
Problems - None, that I could tell. I had never ever have to turn the AMS off, and I probably don't even know how to do it. It's on 24/7. Oh, wait. There are some problems: coughing and sneezing. But I was told that this is normal with a lot of people that don't have incontinence... anyway, if you have a strong cold, be careful. Try to empty your bladder more often to avoid surprises. Only once a couple months after activation after I used it I felt a little pain like something burning, but then I pressed the control again to deflate the cushion once more and it was back to normal.
The cost - yes, it's expensive, but it's worth it. I think the costs here in Brazil are about the same as there, I read (here?) that it's something around US$ 40k, and mine costed around that too, considering everything - surgery, device, hospital, etc..
Daily routine - I am taking Vesicare to help with the bladder capacity, but I think mine is already good (I've peaked at 620ml last time I measured it, now my doctor said I don't need to measure it anymore), and also a nitrofurantoine pill to avoid urinary infections but I had none since, and this was really a problem - I used to have infections all the time. When I don't take the Vesicare pill, it doesn't leak more often or something, I just feel that somehow the urge to void happens more often. As I've said, I wear a small pad while doing my daily stuff outside - I go to a physical therapy every day, but even with exercises it doesn't leak. I did some stuff that required some real physical effort, and there were no leaks. During the summer and hot days, I usually go to the bathroom 2 times a day, 3 the most. During colder/rainy/humid days, it can be up to 5-6 times. I don't go to the bathroom following a schedule, I go whenever I need to. If you have the patience to go there every 2-3 hours, it might be easier for some, and definitely the probability of leaks will decrease. I don't wake up at night to go to the bathroom, just a few times. I can wait until the morning if I need to.
A few observations: as I've mentioned, I'm not a cancer patient. The other treatments for cancer might cause some other problems/difficulties, but to me, there was nothing like that so my outcome might have been a little less troublesome. It's interesting to see some stories about people that became incontinent after the cancer, and were incontinent for maybe just a year or so and already considered it one of the worst things that happened to them. Imagine something like myself, with 47 years of *full* incontinence, every single time. These small leaks are a bonus, not a problem!
And a last question: Would I recommend it? (Do I really have to answer this?) Of course I do recommend it! If you can, go for it without thinking twice. Unless you are physically unable to have the AMS, do it. I hope my succesful story helps all these people that are still thinking about it.