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Opinions and Experiences for Epilepsy Treatment

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

I received the Neuropace RNS

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.

Were you one of many patients

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

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.

If you are in the DC area

If you are in the DC area come learn about Responsive neurostimulation (RNS) presented by Neuropace. It will be the topic at the Epilepsy Foundation Metropolitan Washington (EFMW) chapter's next MeetUp on Thursday, February 21. https://www.meetup.com/Washington-DC-metro-Epilepsy-Meetup/events/257897...

I have refractory epilepsy

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.

If you are in the DC area

If you are in the DC area come learn about Responsive neurostimulation (RNS) presented by Neuropace. It will be the topic at the Epilepsy Foundation Metropolitan Washington (EFMW) chapter's next MeetUp on Thursday, February 21. https://www.meetup.com/Washington-DC-metro-Epilepsy-Meetup/events/257897...

I think I might have posted

I think I might have posted an old link before http://meetu.ps/e/GnYfb/CJKjC/f

I have refractory epilepsy

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.

Thanks for the offer; I would

Thanks for the offer; I would love to go to one of Neuropace's meetings.  Unfortunately I am in southwest Michigan (2 hrs from Chicago).  Also on the 21st I am scheduled for surgery to have leads placed in the brain for EEG monitoring.  This will be in Grand Rapids Michigan.  

Thanks for the offer; I would

Thanks for the offer; I would love to go to one of Neuropace's meetings.  Unfortunately I am in southwest Michigan (2 hrs from Chicago).  Also on the 21st I am scheduled for surgery to have leads placed in the brain for EEG monitoring.  This will be in Grand Rapids Michigan.  

I've had VNS for five years. 

I've had VNS for five years.  It helped as I recovered more quickly from the seizures but it did not stop them.  Also I enjoy singing in choir so wearing the magnet to keep it off during rehearsal and performance was a hassle.

Hi there, has anyone gone

Hi there, has anyone gone through withdrawals from Dilantin? Did you have any symptoms? How long did they last? My mom is 4 days from her last Dilantin pill and still is having memory problems and not connecting very well. She has been through a lot the last three months. Had a quadruple bypass, surgery caused a minor stroke, brain seizures (what the Nero at the hospital referred to them as) put her on high doses of Valproic Acid, Keppra and Dilantin. Went to a new neurologist at the Mayo Clinic who said the drugs were too much (she was like a zombie) so the tapering began. One drug at a time starting with Valproic acid, then Keppra and last Dilantin. Last pill was Saturday. We are just wondering if anyone else has go through withdrawals, what were the Symptoms and for how long? 

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