Intracranial EEG

blue1980rose · #1 11-05-2009, 10:13 PM

This is my first time posting anything. I have had E since fall of 2002. I had a VNS placed in 2006, been through most of the E meds. I have been to Mayo Clinic to be tested for surgery. Results were not good enough. Now they want to do an intracranial EEG. I'm interested to here from people who have it done, please. Also I'm on Keppra ( just switched from generic to keppra XR),Topamax, and cymbalta

Thanks,
Anna

**RobinN** · #2 11-05-2009, 10:21 PM

Welcome Anna.
I don't remember if anyone has had this done, though I am sure if they have you will hear from them. My daughter had three regular EEGs and one video EEG. We tried meds but the side effects were awful, and they increased her seizures.

She remains med free and we control her seizures by making nutritional changes.
Has anyone ever talked to you this?

You don't mention in your profile if you have been told why you are having seizures or if it is still a mystery.

blue1980rose · #3 11-05-2009, 10:32 PM

It's a birth defect but the area is so large they can't remove it all. they are trying to pinpoint the problem area to remove but the 8 days with EEG video my 2nd one by the way

**Nakamova** · #4 11-05-2009, 10:39 PM

Hi Anna, welcome to CWE.

I hope the intracranial EEG yields good results. I haven't had one myself, but a cousin with Parkinsons underwent something similar prior to having a DBS implant. He said it a little strange but pain-free.

Best,
Nakamova

Cint · #5 11-06-2009, 10:43 AM

Hi Anna and welcome,

I'm sorry to hear the VNS didn't do anything for you. I had to have the intracranial EEG done because regular EEG and video EEG wasn't picking up enough info. I was put under general anesthesia and they cut small slits on both sides of my skull. There, they insert small electrodes on the surface of the brain to pick up any seizure activity. They kept a close eye on me the 7 days I was there. I had enough seizures (intense seizures). I had to be put under again to have the electrodes taken out. I don't recall it being painful. But it is a brain surgery.
For me the lobectomy didn't work, and as a last resort, I had the VNS, and that is the only thing that has worked for me. I sure hope you find something that works for you.