My name is Bob and my son, Anthony, has epilepsy.
Anthony started having seizures when he was seven years old. In fact, he almost died three times from seizure activity. He’s been on every medication that they have; toxic levels of them. Nothing’s worked. He’s had a total of eight brain surgeries including the VNS.
We heard about the RNS System about a year and a half ago from his previous doctor and we started to investigate it.
We found doctors at NYU who had worked with the RNS System and they recommended that we try it because there was nothing left in Anthony’s brain that they could safely take out — he already had his left temporal lobe and hippocampus removed.
It’s really only been about a month that he’s had the RNS system actively working in his brain, but we’ve already found out and evaluated things we never knew before!
A lot of times he was having what we call “funny feelings” that even during a 20 hour EEG, never showed up. But now since the neurostimulator was implanted, we’ve learned that it actually was seizure activity!
So far, he’s only had one seizure that the RNS hasn’t stopped, every other one, either the funny feeling or a seizure aura that comes on, has been stopped. There also hasn’t been any negative side effect from the RNS System that we can see at this point.
He’s still having a lot of abnormal activity, and they’re still doing adjustments, but it’s early in the process. We knew going in that it could take a year or more, to see improvements. So we’re still very hopeful about the RNS implant.
To be quite honest, the day before he had his last seizure, the one the RNS didn’t stop for 25 minutes, I told my wife, I said, “You know, even if he still keeps having seizures but it keeps stopping it, we could feel safe with him doing things on his own.” — not worrying about someone being there to give him his emergency medication and to take care of him.
This is the first time in 15 years that I’ve had that feeling about anything; never with any of the surgeries, medications, anything. So this does give me hope.
As we like to say, “We don’t believe anything ‘til we see it,” ‘cause we were told so many times, “this surgery’s gonna stop it”. But at least this is already proving that it will stop a seizure from progressing to the point where we have to give him emergency medicine and end up in the hospital. So that’s an improvement already!
I’ve already spoken to someone else who’s thinking about getting the RNS System and usually people who get the RNS aren’t in the beginning of their epilepsy life, they’re towards the end of it — meaning the desperate part. They’ve tried all the medications; a lot of people have had the brain surgeries before they’ve tried too. The one thing I tell them, and be totally 100% honest, is “it’s worth a try”.
If you don’t do anything, you don’t ever have a chance of success. So even if it means…even where my son’s at right now, where it’s stopping a seizure from progressing, to me that’s a success.
Hoping for the best and realizing that it might not work because everybody’s seizures are different, you gotta trust your doctor; if your doctor recommends it, it’s not going to do anymore damage to your brain that’s done already. If anything else, you’ll be able to gather more information about your epilepsy that can help you down the road.
This represents the experience of individual(s) who have used the RNS System. Individual results will vary.