Anyone had a brain stimulator placed for epilepsy?

Posted by mmas @mmas, Apr 21, 2020

Has anyone had a brain stimulator placed? Our neurologist said that it’s a fight with insurance to get approved for children (I have a 7 yr old with Epilepsy). Just want to learn more about it and hear from people who have had them placed. My daughter has been through 2 brain surgeries so I don’t think I’m mentally there to go through all this again. I’m also not sure if it’s the best solution for her. Would love to hear any feedback....thanks!

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jenfossbru | @jenfossbru | Apr 21, 2020

I can only reply as a social worker as my profession. I am on this site as a mom. My sons seizures are managed by oral meds. For my job, I have had 2 client's get a vns with no relief. I am sure it works for some, not sure specifics.
Best,
Jennifer

caseybach | @caseybach | Apr 21, 2020

Hello, yes tough decisions... My son (16) had a VNS placed about a year ago. So far it has not reduced the number of seizures but has helped with the severity of them. But it did change his voice, which really bummed him out because he loves choir & loves to sing. It does irritate him when it goes off, But he is complaining less of this with time. Fairly simple surgery. Unfortunately, has not yet helped him to reduce his seizure medication yet.....

mmas | @mmas | Apr 25, 2020

Yes, I have heard/read mixed reviews about the VNS. I should have been more specific... has anyone had a neuropace RNS placed? From what our neurologist said it hasnt been placed on too many kids because I think it’s a some what new procedure. This is implanted in your brain and much more invasive which is why I’m hesitant. Any feedback would be great!