My name is Rob, I’m Trish’s brother and I’ve been working with her over the years to try and find a solution for her epilepsy, which has led us to the RNS System. It seems to be the only thing in the past 25 years that’s made any difference and it’s made a dramatic difference.
For people who aren’t used to seeing a seizure, they’re tough to watch. It’s tough to experience it, it’s tough for people to deal with.
There’s a constant concern of going up and down stairs, walking on asphalt and worrying about falling down, just so many things you don’t think of that come with epilepsy.
Prior to the RNS there was a five year downward spiral from maybe a grand mal seizure twice a year to at least once a week — the battles were constant. There were very few things we would go and do where there wasn’t an onset of a major seizure.
I remember driving down Bloomfield Ave after one of her doctors appointments and she started having a grand mal seizure while I was driving. I was so used to it I just put my arm out to keep her from falling over and that was just life.
Trish was being released from the hospital after having the RNS implant surgery and we were waiting for her to be discharged. Suddenly Trish just started having multiple seizures, and when I say multiple, it was probably 40 in an hour!
It was a bit of a rollercoaster because we had gone through exploratory surgery to see if they could remove her affected areas and when they got in, they realized that they couldn’t do anything. After the entire lead-up to that surgery, it was a huge let-down. Now we’re sitting in the hospital and Trish is having all these seizures on the day she’s supposed to be released and I’m thinking to myself, “Ah damn; another thing that didn’t work.” Seizure after seizure after seizure, our mother was with us and you can see us both deflating. Just stress and anxiety.
Trish’s doctor came in and he saw what was going on and said, “I think we should turn it on.” So he did the initial read and saw that she was having a seizure and said, “I’m gonna turn it on; it can’t hurt.” And literally, mid-seizure, it all stopped. Nothing.
Trish went from forty minutes to an hour of continuous seizure to a dead stop.
And the doctor looked at me and said, “Did you see that? Did you just see what I just saw?” And at this point I’m nearly in tears, and I was like, “Uh, yeah I saw it. Is this how it’s gonna be?” “I don’t know,” he said, “I’ve never done this before!”
And since that day, I haven’t seen another seizure.
As frequently as I saw Trish, she would have a seizure. So we’ve gone from literally from total incapacitation to a 180. Trish says she feels better than she’s ever felt in 25 years.
There’s something very life-changing and freeing about the RNS System. You don’t have the looming sense of “When is this gonna happen? When is this gonna happen?” ‘Cause you knew it was going to happen, it wasn’t an “if,” it was a “when.” And now, that’s kind of been removed.
It’s easier to go through day-to-day life without having to constantly worry if I’m going to get a call in the middle of the night from her son and have to go over because the ambulance is there.
It was very dramatic in how quickly it happened, you know? It just works great. I keep waiting for the shoe to drop. But every appointment is just better and better. She’s been nothing but good results.
This represents the experience of individual(s) who have used the RNS System. Individual results will vary.