Does Anyone Have Experience With The RNS Device? My Brother Has It Implanted And Is Doing Terrible With It.
He's having crazier ,strange seizures . His medication was supposed to decrease ,it's been played with and increased instead. His seizures are bizarre ,I'm sorry ,there's no other word to describe them. I'm His only care taker and it's scary. Should we get the device turned off?
@A MyEpilepsyTeam Member
I have had the RNS for 4 or 5 years. My medication never decreased. Doctors have adjusted the power multiple times which never caused me any harm. I wouldn’t have the device… read more
Taste
How many days after a seizure does your mouth return to tasting food. Everything at the moment taste sour
Nothing taste different to me, but I sometimes crave water when I'm having a strong aura. I start swollowing a lot too, even if I'm not drinking anything
Have Any Of You Had A Lobotomy? Or The VNS Implant? And What Are Your Thoughts And Opinions On Both?
I've had both brain Sugery and VNS implant. The brain surgery helped decrease my seizure frequency down. They are still unpredictable and not 100% controlled with meds, but they are not as violent as… read more
What Do Everyone Think About Brain Surgery For My Epilepsy?
In 2004 surgery was suggested and I jumped on it, six months for recovery and have had minimal amount of seizures with my last one in December of 2011. I have been on Vimpat since 2012 and now the… read more
I Feel Sudden Electric-shock Like Sensations, Intolerable Pain, Buzzing, Moving Across Shoulders, Neck & Down Spine??
Is it part of my parietal lobe seizures? Maybe focal aware? I have focal unaware mostly (complex partials), also simple focal aware (auras) of rt temporal parietal lobes, and sometimes bilateral to left side temporal parietal lobes also. Anyone ever experience this type of sensation or is it something else??
Here are all of the facts from the Experts at the Epilepsy Foundation and the US National Library of Medicine about seizures of all kinds but especially epileptic seizures
Epilepsy Foundation
… read more
Temporal Lobectomy
Is it possible to have a 2nd temporal lobectomy?
I was told that since seizures occur in the left temporal lobe, surgery is not an option, as it could make my memory problem worse.
Left Frontal Lobectomy
Left frontal lombectomy
Does Anyone Have General Seizure Having Seizures In Both Sides Of Their Brain Rather Than Just 1 Side? Plus More Than 1 Type Of Seizure
This is a very good question since there are many parts to the brain. They are as follows: corpus callosum, temporal lobe, frontal lobe, amygdala, hippocampus, parietal lobe, and occipital lobe. I… read more
Hi Have Any Of You Guys Had Temporal Lobectomy Surgery? If So What Is Outcome And Was It Successful
I had 2 right temporal lobe lobectomies, removing 13%dead brain tissue of the 18% damaged. Unable to remove all 18% because it was too close, making too risky to area of other dead brain tissue. Or it… read more
I'm Curious About Brain Surgery. ðŸ§
It turns out I am medication and VNS resistant. My neurologist is really pushing for another 7 day in-study so we can look into brain surgery. I am scared poopless. 😱 I want to know about your experiences...did it work? how was the surgery itself? Any info is appreciated.
It is quit OK to be scared however do as much research on your own before going through any surgery that shit ain't cheap believe me..... However the device is chemistry based it works for some and it… read more