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Posted 11/4/2011 1:08 PM (GMT 0)
95 % satisfaction? really,,, considering what we had to do otherwise... man I am 100% satisfied.. Though the technology is 20 years old.. I am amazed at the simplicity of it all.

I just experiance small leaks mostly from movements or sitting on a surface that pushes on the cuff. The med. thin pad I wear does it's job for the whole 24 hours.. only once in a while do I experiance leakage to where I have to change pads mid day. The double shorts are also effective in keeping the pad up and tight. In case of a leak it will stay in the pad vs running off before it can absorb. That is our "New Normal" I guess...
Posted 11/4/2011 9:40 PM (GMT 0)
Another detail I noticed today: there isn't a leaking "pattern", like "if I raise my left arm, it leaks" or something identifiable as a reason to leak (yet, or I haven't figured it in my case). I did 2 visits to the restroom doing the same routine, with the same (guessing here) urine amount, and in the 2nd, it leaked badly (biggest leak so far) before the squeezing while in the prior visit, there were no leaks whatsoever. Then in another time after this big leak everything was fine again...

When I mentioned the 95% rating it's not really that bad, this extra 5% are these details I haven't figured yet how to deal with. For me personally, having this stuff going on for 47 years, I'd be quite happy with something around the 70% success rate (one small pad a day? Heaven!), but I'm sure it's bigger than that.
Posted 11/11/2011 12:17 AM (GMT 0)
A week after the activation, I must say that it's really impressive. Yes, there were some leaks, but no disasters (aka wet pants). It's very manageable, once you know how and why these minor leaks happen and plan your activities accordingly.

If I had to give it satisfaction rates for best and for worst days, the best was like 150% better than I expected (top of the scale and more) and the worst would be no less than 80% of what I expected, when the pad was quite more wet than I expected it could get and maybe about to leak although it was not soaked (far from that!) but this happened after not going for a "biopause" for 4 hours and after doing some exercising (light stuff, but still), I really pushed its limits a bit that time and everybody survived the tests, including my pants.

Do I recommend it? Definitely yes, even my worst days are a thousand times better than my old "waterfall" days. Complaints? None... but the costs. But it was worth every cent.
Posted 11/21/2011 6:28 PM (GMT 0)
A quick update: today the first serious accident happened. A very strong leak, coming out of a car. Soaked pad (and pants...), and at home there were still 200ml left in the bladder (my doctor asked me to monitor the amount of urine every time). about 2 hours earlier there was 350ml and supposedly the bladder should have been empty since. There wasn't an urge but it leaked like the bladder was very full and if there was no device at all. I'm going to test it again at home to see if it might have been accidentally deactivated or something as from the external appearance of the pump it seems to be working as usual. I wasn't really expecting for such a huge leaking, let alone a leak without doing anything stressful.
Posted 11/21/2011 8:11 PM (GMT 0)
I had the same wet pants - went to restaurant with Brother, Sister and their better halves and my wife.

I activated the button when i slid across the seat of a Honda CRV.

It has also happened at local Y when doing crunches with couple of their machines, it hit button perfect so I wear a pad when working out.

If you know when and how you can prevent much of problem.

Posted 11/21/2011 8:38 PM (GMT 0)
I just "tested" it some minutes ago and it didn't leak, just a drop - and I wasn't wearing a pad or even underwear - so it might be related to the car indeed, I read a lot of stories about car seats causing troubles. Weird is that I had been in this car many times before and nothing happened, maybe it was just the extra stuff stored in my bladder... I really don't believe it was my bladder "overcontracting".
I noticed way before this accident that if I am too quick to do some stuff it can leak more than usual. Also, as my method to empty my bladder was always using some force - Valsalva, as I don't have (never did) a working sphincter, when I do certain movements (lifting from a chair, for example) I still "push" my abdominal muscles kind of the same way I would do to empty my bladder, causing some leaks of variable intensity depending on what's still stored in my bladder and the force of the pushings. I started to think of a way to break the link of these movements with the abdominal push, to at least minimize these leaks, but sometimes I might forget and there will be some leaks...
Posted 11/25/2011 6:50 PM (GMT 0)
Hi Guys!


I'm 23 male from Italy who live with spina bifida (and have to use wheelchair but its not a problem when you compare it to total incontience...

I wanna try ZSI 375 because I've heard that it's better than old AMS 800 because it gives more hope to be fully dry.

Does anybody have implanted ZSI 375?


@Marcus

do you urinate normally?I need to do catheterization or belly press to get rid of remaing urine.
Posted 11/25/2011 7:12 PM (GMT 0)
Yes it's normal (never did catheterization), but if I didn't pay attention some urine used to remain in the bladder and by pure laziness I didn't empty it all the time - this was before the AMS. Now I am getting used to empty it all the time, with the Valsalva only, and my previous ultrasounds said that there's a minimum residue left all the time. I am about to do the first ultrasound exam after the AMS in a few days to check how things are going but I think regarding to residual urine things are quite fine.
I saw some videos of the ZSI and I found the ZSI to be a bit bulky as the pump and the control are placed in the same "container" so to speak, it might be a bit more unconfortable than the AMS. It seems to be way more used in Europe than the AMS.
If you are in a wheelchair (therefore doing a bit less of the troublesome movements that cause the bigger leaks), much probably you won't have any problems with leaks with the AMS. If I stay sit most of the day, the leaks are zero, not close to, but zero. But I think if you also have some form of urine retention, the AMS isn't recommended.
Posted 11/25/2011 10:37 PM (GMT 0)
I wonder if I cant urinate normally (you know by using my mind) so what after AMS or ZSI is implanted?

Catheterization?Valsalva?or AMS and ZSI are not for me?

@Marcus, so nothing leaks behind your AMS? You just have some residue left, right?



I will talk with my doctor on 10th December.

Post Edited (lukasso21) : 11/25/2011 3:56:34 PM (GMT-7)

Posted 11/25/2011 11:18 PM (GMT 0)
Think of the AMS and the ZSI as a "cap" or a "corket" - it blocks the urine from leaking like the natural sphincter should do. If by using your mind you mean controlling the muscles and sphincter like a normal person, if you couldn't do it before, you won't be able to do that with the AMS or the ZSI, they work in a different (although analogue considering the desired results) way. In my particular case, I could feel my bladder full but I just didn't have ways to block the leak - there was no way for my brain to send an "order" to my sphincter and muscles to make them work due to the spinal cord damage (which I suppose yours is similar), and the artificial sphincter won't fix that, it doesn't fix the path for the electrical signals to the nerves so to speak. What it does is to make a physical blockage for the urine, and when the "cork" is removed, the urine can (and will) flow.
The only way to be sure that the artificial sphincter will be the right solution for you is after doing all the required tests and consulting your doctor, each person is different.
There are occasional leaks here and there, but they aren't due to residual urine, but even these leaks are minor compared to the "open faucet" that it was before.
Posted 11/25/2011 11:24 PM (GMT 0)
Lukasso
IF you hold your penis real tight clamping off the urethra, you still may leak a little but can control urinating.
Both devises use that same principle of clamping off the urethra.
Those of us who have choses the aritficial sphincter whether ZSI (2011 new) vs the AMS (1990's?) have tried numerous solutions to our incontinence whether bulking, clamps, bio-feedback, slings, exercises etc with no success.
Just before I had the AMS, I had a stricture (4th) which the urologist cleaned out the mess.
After the operation, I had no continence and felt severly limited in what I could and couldn't do.
Drinking 8 glasses of water was not an option during day only when home.
Travel - I took 8-10 pads a day and extra underwear so I could change.
With Spina-Bifuda, not certain what all your options are but the aritficial sphincter made life almost normal for me.
Thanks for bringing info the on th ZSI, it was knew to me and read about it. There wasn't enough on Internet since it is approximately 2010 to 2011 to fully understand problems as well as benefits over the AMS.

Good Luck whatever you chose or don't chose.

Tom of Ohio
Posted 11/26/2011 2:43 AM (GMT 0)
by the way...

how often you have to urinate with your AMSs?
Posted 11/26/2011 3:36 AM (GMT 0)
I think there isn't a mandatory time when you must urinate, my doctor never told me so. If I go there every 2-3 hours it's less "risky" so to speak but I can go all night without urinating, sometimes over 10 hours, and I wake up dry. As I've said, each person is different and it also depends on your bladder's capacity as well.
Posted 11/26/2011 9:09 AM (GMT 0)
about ZSI375 in Portugal:
http://www.youtube.com/watch?v=SyIpQZIPhYo
Posted 11/26/2011 2:13 PM (GMT 0)
Using the AMS when first starting to use they suggest 2-3hrs.   Your bladder may have shrunk and you will need to stretch your bladder gradually.  

If you have a tight ballon and you try to blew it up, it tends to be more difficult. As you blew it up gradually it stretches.

Your bladder after disuse, leakage, is similar and the device (artificial sphincter) can hold so much before you leak.

When I had it activated I drove from Cleveland home, which was 3-4 hrs.  I had to stop after about 2.5hrs, my bladder felt full and I had to go.

That's the other area, prior to sphincter, sometimes, I couldn't tell if my bladder was full or not.

I still have some leakage, don't pay attention to bladder or accidentally activate button, the system isn't perfect but comparing to prior I am 150% better.

Tom

Posted 11/29/2011 12:39 PM (GMT 0)
thx you guys for your explaining!


I call my doctor and now I think that AMS or even ZSI375 are not for me.

Why?I cant control sphincter and detrusor either.So I would have to use catherization or valsalva but it would be too complicated for a person in wheelchair to be able to do it in every situation.


So I will do all nessesary tests for mitrofanoff appendicovesicostomy or other similar surgery.

It's a big surgery but seems to work very well in almost all cases.
Posted 11/29/2011 5:55 PM (GMT 0)
I usually urinate every 2-3 hours. Depends consumption of liquid to some extent and just don't like the urge that I sometimes get. I probably need to stretch my bladder but if I get 200-300ml it's time to go.

At night I rarely can get past 2-3 hours without waking up. I get up and go and go right back to sleep. It I take a sleeping aid I can often prolong this by an hour or so. Almost any urge at all wakes me up and if I don't go I will just lay there half asleep.

I like to have 1-2 alcohol drinks  before dinner and that probably causes some of this.

Posted 11/29/2011 7:48 PM (GMT 0)
2-3 hours is a very good time frame for me as well during the day. If you don't get bothered to go there every 2 hours and pump it, it's perfect. If I have to do something stressful even if in a shorter time frame than these 2 hours, I go there first to avoid problems. At night I can go as much as 10-12 hours if not walking or doing anything more stressful (in the old days even switching sides in bed made me leak...). I can go past this 3 hour limit if needed, but it's not very "safe" mostly without a pad. With the pad, it can handle the small drips easily. In a few occasions I had to wait a few minutes before I could go to the bathroom and the urge was more than I desired it to be and I thought some accident would definitely happen but no, it didn't. The accidents that have happened to me (2 so far in almost a month after activation) all happened a bit unexpectedly, I guess I wasn't really paying much attention to my moves and all that.

Other day I read some information that says that the first urge signal happens when the capacity of the bladder is at 25%, so if you have a first urge (moderate or small) and leaks 200ml right there when it happens, it could mean you could handle 800ml total which is quite good (although I don't trust much this rate, some people have more "sensitive" bladders I guess for several reasons).

Caffeine and alcohol seem to make the bladder a bit more sensitive as well and prone to overcontracting and there is also some other process related to some hormone that makes you produce more urine than usual that is activated by alcohol, although I still have to test these myself.

Also regarding to lukasso21: I think if you can't empty the bladder "on your own" (i.e. without a catheter) the AMS shouldn't (which is different than "can't") be installed. It could be installed in a situation like this I think, but the residual urine would make you have constant infections. If I was you I'd try to listen to more than one opinion though, my old urologist that was my doctor for 35 years wasn't interested at all in doing this for me, his opinion was that I was "very close to normality"... well now I am really close, but not then.
Posted 12/22/2011 1:30 PM (GMT 0)
As to some of the comments about how long you are getting sleep at night, I too, though having a Neobladder, have the same issues. I use a pillow between my legs. And I move around with it there. I think the legs being close together can squeeze the cuff a little.

Also, when I sleep a bit on my front side, I think that causes some abdominal pressure on the bladder. I have leaked there also. I try to get 3-4 hours using the pillow and though I can start out laying on my front side, I try to stay on my side or back as the night goes on and my bladder starts to fill up. Putting less pressure on the cuff and the bladder.

I also have a Honda Accord, and the raised edge on the seat can activate the cuff if I stop there for a moment. Also really hard chairs, edges of chairs.. the edge of our mattress where it is harder. When I had a full bladder in bed, went to get up and fully activated it before I could get to the toliet.

I just pay attention to those things now and really donot think about them so much

Neoman
Posted 12/24/2011 4:42 AM (GMT 0)
Just a caution, I have a jock which hits the button almost perfectly . Its a little snug and can activate the cuff even if i don't want it goo
Posted 1/14/2012 7:55 PM (GMT 0)
2 months and a few days after the activation, all I have to say is that this is perfect. All the leaks (2 or 3) were caused by distraction. Of course some sneezing causes a bit of a problem but way less than without the device. Otherwise, no complaints. I did my first urine tests a few weeks ago, and no infection was present, and I suppose this will stay like this as now I can empty my troublesome neurogenic bladder as it should. I am going less and less frequently to the bathroom (no need to, really) and there aren't any "surprises". Overnight I can hold 600ml but at 400ml the urge starts to get a bit annoying. The only "problem" is that I am not yet used to walk with a full bladder, I always think I'm leaking... and I'm not!
Posted 1/14/2012 11:37 PM (GMT 0)
I am at a year installed and 2 months shy of activation for 1 yr.

I am finding the longer it is since installed the better it gets.

Still learning new tricks.

Posted 1/16/2012 11:59 PM (GMT 0)
Tom and all,

I agree that it gets better with time. I am now 2 1/2 years since I started this thread. I am settled into a very comfortable way of life. The AMS gives you a normal life with no restrictions. Sure, a little leakage can occur as noted in all the different situations discussed.

I still marvel at how a couple of "little things" that I found on HW make a lot of difference. I wear jockey boxer briefs with a horiznal flap. I find this works a lot better than trying to get Willie out on the side from briefs with a vertical flap. Also the technique I use (that I discovered on HW) is that I normally go by opening the zipper, pulling Willie up through the horizonal flap. Then, I run my right hand down inside my trousers between the underware. I squeeze the bulb with the right hand while holding Willie with the left hand. I can do this in a public john standing next to people and they don't even notice that I am doing anything different than anyone else. I find this easier than unbuckling belt and pants and lowering your trousers. I have posted this before but it really gets you back to where you can go easily.

Another helpful thing is after you pee reach under your scrotum and push upward on the urethera. It will squeeze out a few remaining drops that otherwise might leak into your underware. I do not have the patience to wait 20-30 seconds for the AMS to close completely. If I do this upward squeeze to get out the residual pee I can go quickly and get on with business.

Just some helpful hints if anyone did not see or try them.

Hoo Raaa! for the AMS 800

Carl

Posted 1/17/2012 12:37 AM (GMT 0)
I am left handed and the surgeon want to put the bulb on the left side and I said needed on the right. I can do the normal briefs just take out the boys little bit and press bulb with rt and hold jr with left.

Will try your trick for residual. I sometimes don't get it all closed. Especially at night when I pee just before bed.

Thanks
Posted 1/17/2012 1:36 AM (GMT 0)
One trick I need to learn yet is how to activate it with one hand. It's very very tricky mostly after a couple beers (I don't have a good balance myself even without the beers...), and using both hands is a bit safer, and I also noticed that do it standing is much better than sitting. When I try to use one hand, I never manage to squeeze the pump properly each time and while it takes normally 4-5 times to empty it with one hand probably it would be the double number of squeezes. I don't see a problem with the pants down method though, it's a minor "side-effect" compared to the benefits of the device. Mine seems to close quite fast, or I don't notice the drips after the job is done, usually the time i take to wash hands, put pants back etc is enough for it to close. Just make sure that the bladder is really empty and it will be fine, I think.
I'm still not confident yet to get rid of the pad for good (except at home, no pads) but I am thinking about carrying one in my pocket in some days and if things start to get a bit messy I'll put it back, mostly in hotter days I think I can be safe without the pad even when exercising. I never had a fully soaked pad (40% the most, maybe, and only once) neither had to replace one because it was too wet.
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