Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
All Resources Treatments A-Z Personal Assistant Help Center Crisis
Powered By
Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Hi Everyone. I am looking at a RNS for my epilepsy. I have had a lot of tests so far. Has anyone had experience with RNS?

A MyEpilepsyTeam Member asked a question 💭
Helena, MT

I am meeting with my doctor this Friday for the next steps. Research says I might have to have an intracranial EEG. Has anyone had an intracranial EEG or RNS, and can you share your experience?

June 8
 · 
Reactions

Answer Summary

Members came together to support someone exploring RNS surgery and intracranial EEG for epilepsy, sharing detailed and personal accounts of... Read more

Members came together to support someone exploring RNS surgery and intracranial EEG for epilepsy, sharing detailed and personal accounts of their own journeys. One member described the full RNS experience, including the surgical EEG, nightly data transfers, magnet use during seizures, and doctor-monitored adjustments, noting honest results while offering encouragement. A recurring theme was navigating the multi-stage surgical evaluation process with patience, including SEEG referrals, neuropsych testing, and long waits, all met with mutual support and hope.

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member I have my 3rd appointment Wednesday, 9/30, I’m so nervous. I don’t want to get my hopes up. I already have the VNS but it doesn’t work for me. I’ve had it for 15 years. Could you share your journey?

September 28
A MyEpilepsyTeam Member

I just had my RNS surgery in March of this year. I will gladly share my journey with you!

July 26
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member @A MyEpilepsyTeam Member
Here’s a picture from my SEEG.

June 9
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member im already on stage 2, do you mind me asking what stage you are on

June 9
A MyEpilepsyTeam Member

Thank you @A MyEpilepsyTeam Member

June 8

Related Questions

View All

Is anyone drug-resistant to seizure medication?

A MyEpilepsyTeam Member asked a question 💭
New Jersey, NJ
January 30

RNS

A MyEpilepsyTeam Member asked a question 💭
Venice, FL
May 2, 2017

My Perspective: Things I Wish Everyone Knew About Epilepsy
A Mother’s Story of Managing Seizures (VIDEO)
Finding a New Normal: Living With Epilepsy