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Neuropace aka RNS upcoming surgery
Fri, 01/17/2020 - 16:34Topic: Surgery and Devices
My adult sister has an AVM deep in her left temporal lobe so removal surgery is too risky - if the surgery is not successful, she may lose ability to speak or understand speech! She is going to have neuropace implanted in a few weeks. I have been reading here that some people experienced MORE seizures, one person had an infected lead, most have to get the implant "adjusted" every so often?
For those who have the RNS surgery - what do you think? 1. How long have you had it? 2. Are you better off, same or worse? 3. Did you have to remove it? Thank you so much in advance for your comments!
Comments
How frequently did you have
Submitted by cfp1115 on Wed, 2020-01-22 - 16:21
How frequently did you have disabling seizures prior to the RNS? Wondering because my son has been denied insurance coverage for RNS because he hasn't had "3 disabling seizures for the past 3 months" (one of their 5 criteria - he meets the other 4). He has ~ 3 intense tonic-clonic seizures/status epilepticus episodes per year, while taking 3 AEDs. Because he has failed so many medications, his epileptologist said RNS was his best hope for seizure control.
Thank you, again, Michael! I
Submitted by ConcernedSister_5e22264cef15c on Wed, 2020-01-22 - 17:06
Thank you, again, Michael! I wish you all the best for your continuing recovery!
I understand. Thank you. I
Submitted by ConcernedSister_5e22264cef15c on Tue, 2020-01-21 - 13:49
I understand. Thank you. I was curious about this device developed by the Neuropace biotech firm and wanted to hear first hand accounts of real outcomes after the RNS surgery since I can't find testimony or reviews from actual patients anywhere except from the Neuropace corporation. I do understand each patient is different!