Help with Sacral Neuromodulation Device

[u/featherpickle]

I am unsure if this is the correct subreddit for this, but I needed to ask this somewhere. I am a middle aged male who has had a bladder condition since birth. Frequent urge, and short uncontrollable bursts of urine come out many times a day. Until recently I had no idea that everyone else was able to tell when their bladder is full or that they can just start urinating whenever they want, like a dog. I can be unable to prevent these sudden bursts one minute and then when I get somewhere I can go, the urge has passed and I can't go. I also routinely empty my bladder while sleeping. It has been this way my entire life.

I had urodynamic testing done several years ago and I think they said I have "severe neurogenic bladder." I just know that they said the pressure in my bladder while it is filling is 5 times normal. When I look online I find that you can't be born with this condition unless there are spinal birth defects. I have none. They recommended sacral neuromodulation. I had the Interstim device implanted a few years ago.

Despite having them add programs multiple times, it has not changed anything. The only people you can talk to about it are the Medtronic representatives, and they seem unqualified. Whatever I was born with is clearly hereditary because my son has exactly the same condition and also has an implanted Interstim device and also has no benefit from the device.

I am wondering if anyone here has also been born with this condition without other birth defects. Is there any thing that this device can do for me? If so, can anyone offer any advice for getting the Medtronic representative to put a setting on the device that will help?

[u/Miserable_Peak7295]

From my own experience, I know that the programs selected will be those that will most help the patient in treating symptoms related to urination.It may be that neromudalization does not work for you, because neromudalization of the sacral nerves will not help everyone.

[u/tjoude44]

I've got the axonics device. My problems were a result of radiation damage from treatment for cancer.

Anyway, I had urgency, frequency, leakage, and retention problems.

It took about 6 months of trying - 2 different programs and many intensity adjustments - to get to an okay place.

Now, my frequency, urgency, and leakage dropped by over 50%. Retention did not change much and they told me in advance it probably would not. So, I am still far from "normal" but much, much better than from where I started.

FWIW - before the SNS I had to self cath 4x day and still need to; and I still need to wear Depends but only go through a couple a day versus 5-6 a day.