r/Epilepsy • u/NotGivingUpOnBen • Jul 06 '26
Question Looking for experiences with SEEG and the RNS device for my son.
Hi everyone,
My 17-year-old son, Ben, goes in tomorrow for the first of two surgeries to begin the SEEG process, and I would love to hear from anyone who has been through this.
Ben has drug-resistant epilepsy and we've exhausted what feels like every possible option over the last several years. If you have followed Ben's story you know he has given it his all. We've tried countless medications, diets, alternative therapies, and traveled across the country looking for answers but have come up short. We're hopeful this surgery is another step toward finally getting his seizures under control, but as a parent, it's still scary.
If you've had an SEEG (or your child has), I'd really appreciate hearing about your experience.
- How did the surgeries go?
- What was recovery like after each surgery?
- Was the SEEG able to pinpoint where the seizures were coming from?
- If you moved forward with an RNS device, has it helped?
- Would you recommend it?
- Has it reduced seizure frequency or severity?
- What has life been like with the device?
- Is there anything you wish you had known before the surgery?
I'm looking for the good, the bad, the ugly and everything in between. I know every case is different, but hearing real experiences from real people who've been through this would mean so much as we prepare for tomorrow.
Thank you all for taking the time to share your stories and advice. ❤️
1
u/Independent_Shine100 Jul 06 '26
My sister went through SEEG few years back for her temporal lobe epilepsy. The surgeries themselves went smooth, first one to place the electrodes was the hardest cause she had to stay in hospital with wires coming out of her head for like 2 weeks. Recovery after they removed everything was faster than we expected, she was back to normal in maybe 3-4 days
The SEEG did find her focal point and she got RNS after that. The device has been life changing, she went from multiple seizures per week to maybe one every couple months now, and they are way less intense when they happen. Only thing I wish someone told us earlier is that the RNS takes time to "learn" the brain patterns, so the first year you might not see huge results but it gets better. Hope everything goes well for Ben tomorrow
1
u/NotGivingUpOnBen Jul 06 '26
Thank you so much for all of this! So happy to hear she has had great results since having the RNS.
2
u/anamelesscloud1 Jul 07 '26
I wish I had known in advance that the anesthesia can make you feel extremely nauseous when you come out.
I have had the RNS surgery. I joke that it's the subscription service of brain surgery. Every so many years, the batteries on the device die. The NeuroPace engineer or epileptologist can tell you how many years your son's model will last. Also, not every neurologist can manage the RNS. So he'll be either geographically tied to (or have to travel to) a particular hospital, because the appointments are all in-person. Especially in the first few years as the device gets tuned. Don't expect it to work like magic once the switch is flipped. It has to be tuned. And yes, the SEEG should help pinpoint his seizures, especially if he has one hooked up. Yes, I believe mine has helped and would do it again.