AMS 800 and Virtue Sling Journey

I just came back from an appointment today (exactly 2 months and a half after activation), and everything is as fine as it can be, I have to return only in 3 months. I will keep taking some light antibiotics for some more time just to "be on the safer side" as the doctor said, and I'll also keep the Vesicare pills.
The doctor told me to try to get rid of the pads, I told him I will... but not just yet. He said also that I don't need to squeeze the pump as many times as I'm doing (usually 4-5), and said that with just one it's ok and it can even help avoiding trouble with the device's life span. Will try that at home first to see if it really makes a difference, but I think it does, using more squeezes is better. He said that turning it off at night won't make a difference on its life time.
Another important advice (order?) he gave me is that to try to always pee standing as much as possible. He also said that if I can't empty the bladder in one attempt, no problem, I shouldn't force to urinate with a strong flow to do it at once, but just squeeze it again and do it once or twice more without making too much effort (as I have to use the Valsalva) until it's empty. He was quite satisfied with the intervals I'm using the device (3+ hours the shortest, 12+ at night if needed) and said that I'm having a very good capacity measurement and it will improve even more.

OK, so here goes an update...
It's been nearly 8 months since my activation. Things are going quite nicely. There were a few incidents only of leakage (no disasters though), only due to my own lack of attention I guess. The biggest leaks happen if I don't pay attention while standing up and a lot of times when I'm leaving a car - now that's a pattern I've learned to recognize. Only. I'm wearing one pad a day only when I'm out, at home no pads whatsoever.
Of course, coughing and sneezing are other causes of small leakage but I've managed to deal with that. If I have a cold it's more complicated, but if it's an occasional cough or sneeze I just have to pay attention and try not to make any extra effort on my lower parts... Other day I sneezed while standing up, and there was no leakage to my surprise...
I had a short outbreak of urinary infection which I'm not sure yet if was really an infection (no nitrites detected!), it might have been just a contamination while taking the sample, who knows, my doctor wasn't worried either. I'm still taking a daily dose of Vesicare and a daily dose of nitrofurantoin but my doctor said these might be suspended in the next appointment, in 4 months. I did an US a month or so ago and everything is fine, no detectable residue left, good bladder compliance and all. Other than that small episode of infection, it's pretty much normal life.
My bladder capacity seems to have augmented a lot. My "record" so to speak was 620ml (although I don't measure it all the time anymore), but I'm almost sure I can handle more than that. Now I only start feeling the first desire that start to get a little annoying when it's over 350-400ml (it used to happen with 200ml in the first days). I am able to hold 450ml easily without accidents if I have to, 500 starts to get a little uncomfortable, 600 is already my top. Sometimes I go to the bathroom and hit the 400ml mark, then around 30-45 mins later I have to go again and there goes some more 200-300ml, it happens more during the morning.
Sometimes the device kind of gives me a sign "hey I'm here", and it hurts a little here and there but it's not a problem. Now I also know pretty well where all the parts are, so I think I can detect if there is a real problem somwhere. Once I had a small pain after urinating, it was starting to get annoying, then I just deflated it once more and it stopped and never happened again.
It also seems to work better when the bladder is full.
That's it for now...

1 month is a bit too early to notice any real improvements, things will get better every week. I was quite worried in my first weeks that there were some leaks (small drips, actually) that later on I found to be very unimportant. Whatever leaks nowadays, it's less than 1% of what is left in my bladder, if not less.
I tried a cunningham clamp for a few days and it was awful (had some bleeding and stuff). I don't recommend it to anyone. The old bag with catheter works fine although it's not a very practical solution sometimes.
As you had some more physical complications than just a "simple" incontinence due to neurologic problems (like mine, for example, I'm - was - also 100% incontinent), I think it can be a little more complicated to make things fixed but the AMS really works as it should. It's not 100% perfect (maybe 98%?), but as my doctor always tells me "there's nothing 100% perfect".
The Vesicare I'm taking was administered exactly to augment the bladder capacity over time. Mine had already a good capacity, but the bigger the better. I think it doesn't cause exactly some sort of artificial urine retention and it works in a different way, as I haven't experienced any bloating or discomfort or blood pressure raise or any other alteration in my blood tests that could indicate some urine retention - and as I can verify from the measurements, the urine amount is very normal.
In my last US scan there was also a good improvement, which was in the bladder walls. They used to be much thicker due to constant infections/inflammation, now they are almost normal, or as the result says "discreet thickening of the bladder walls".

This time of 2-3 hours seems to be compatible with what I had from the days where my bladder had a smaller capacity. I used to go to the bathroom in intervals of 3 hours the most (with a relatively medium/strong urge at times), and at night I still used a pad to avoid problems (although it didn't leak) but I still had to wake up at least once. As it was getting a bigger capacity, the intervals started to get longer, and now I can stay a lot of time without the need to use the bathroom (as in an urge), but I usually try to avoid this interval to be bigger than 5 hours, except at night. Something I also noticed that improved is that in colder/rainy days, I had the feeling that I had to go quite sooner than usual, now it seems that it doesn't make any difference. Hotter days of course are way easier to manage, even with large intakes of water or other fluids.

Thanks Marcus! You have motivated me to revisit my frequency issue. I will visit my Uro. Also, I find that sharing the HW experiences helps prompts suggestions from the Ero.

Thanks guys for coming back and reviving this thread. It's great to have someone to listen to and talk to about this. I'm single and live alone and I only have 1 friend I can talk to about this ....but he has never gone through anything like this.

I was 47 at the time. The motorcycle wreck I was in broke my pelvis in two, right through the nerve root bundle. I lost most the use and allot of the feeling of my right side from waist down. Including my insides. My urethra was torn from my bladder at the bladder neck. That was repaired with a cath and skin growing gause.

I've had a supra pubic cath going through a hole in my belly since April 24,07. My bladder has been emptying 100% since then.
I've tied off the cath hose and gone to using the AMS. I have nerve damage so I get wrong signals/spasms. But they are getting less frequent. The spasms are so great that I push through the AMS ... That hurts big time !

I'm staying close to the farm house (or an out building) where I can go when needed. I do the peepee dance until I can wait any longer trying to enlarge and relearn/reteach my bladder.
I have relearned how to walk but it's not something I do well even with a leg/foot brace. The night trips to the toilet are a PITA but something I must relearn also. I can understand the "Walking while under stress" That's hard to do. I say to myself "hold it, hold it" man that is tough !
This thing works so great. I almost feel normal again !

I think back over the last 5 yrs and I see how far I've come. That tells me that 5 yrs from now I'll also see how much more farther I've made it.
The age thing is also adding more obstacles. Some of the things I'm going through is related to age and some the accident. Determining which is which is near impossible. As time goes on more and more age factors in.

Thanks again for a place to vent ......

Johnny

Hello All...
I have been following this forum for a while and just decided to join. I'm 9 days post-op from having the AMS 800 implanted and I wanted to see if I'm doing things right with the posting before I got involved with my journey to this point........

tpaul

Tallguy
Reading your posts early on inspired me to go through with getting the AMS 800. With everything positive that you had to say about it and with me going through 6-10 pad a day I felt I had nothing to loose. Just 5 days till my two week appointment and I feel relatively good except for some swelling in the scrotum. Still can't recognize the pump as being a pump due to the swelling.
tpaul

I've had it 6 + months now. It's been pretty much an easy road. No complecations as far as the AMS goes. Sometimes I have testical pain. Its like the tubes of the AMS cross my testical tubes and I feel "racked" but that doesnt last long enough for me to have to go see the dr. about.
I had a bad accedent that messed up my urethia/bladder neck/pelvis .... So im not built normal there anymore. That is the cause of any pain/problems I've had.
I have had spasams that pushed urine past the AMS. That hurts for sure. I still use light pads for safety measures. (female panty liners) ....... if yall tell anyone ill come find you ! Still better than the 100% free flow I had.

You are almost there! Sounds like you are progressing right on schedule.

Thanks for the history tpaul. I pray that what you learned from me proves to be as good for you as it did for me and many others. You are about to get your life back.

Went to my two week appointment yesterday and the doc said evertyhing was looking good and the placement of the pump in my scrotum was fine and that the swelling that is left over will gradually go away, might take as long as six months. He said when activation time comes that enough of the swelling will be gone that I shouldn't have any problem operating the pump.

Not that I'm anxious or anything......but I put a count down clock on my cell phone till activation......25 days, 4 hours, 52 minutes and 30 seconds and counting!!!!