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Opinions and Experiences for Epilepsy Treatment
Sat, 02/16/2019 - 10:14Topic: Share Your Story
There has been a recent email chain due to an upcoming presentation of a specific treatment for epilepsy that will be held at an upcoming Epilepsy Foundation Metropolitan Washington Meet Up group. Due to the emails that are being sent and that it has been going out on the general invitation email list I am moving the discussion to the Epilepsy.com Share Your Discussion Forum because I think it is a more appropriate place to continue the expressions of various opinions regarding Epilepsy Treatments.
Comments
Were you one of many patients
Submitted by birdman on Mon, 2019-02-18 - 08:59
Were you one of many patients who had more "frequent" seizures ( >3 per month)? I've been to two different clinics and they still seem to be more anxious to do a resection than to implant RNS. I'm trying to figure out why they wish to do such more permanent and possible destructive treatment than try a reversible treatment. My seizures only occur once or twice per month and I often only lose awareness on a seizure once every 3 months. It seems RNS would be a great way to go for persons who have less frequent seizures instead of enduring side effects in case that infrequent event occurs.
I have refractory epilepsy
Submitted by jblowitski on Mon, 2019-02-18 - 14:33
I have refractory epilepsy and my seizures are occurring at an extremely higher rate than yours and predominantly occurring in my left temporal lobe, but also in the right so resection was not an option for me (due to right and left locations). The only surgical options were the Vagus nerve stimulation (VNS) or the Responsive neurostimulation device (RNS). I chose RNS because it monitors and records my seizures providing my Epileptologist with valuable data regarding when and where they were occurring as well as that it only stimulated on demand based on the monitoring of my brain activity.
I received the Neuropace RNS
Submitted by jblowitski on Sat, 2019-02-16 - 11:50
I received the Neuropace RNS system in mid-2014 and just received an upgrade in November of 2018 and would be happy to answer any questions regarding my experience with the system.