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Intracranial EEG - my story

Tue, 03/28/2017 - 00:41
I thought I would share my experience, in case others come for information. I was desperate for this info before I went in! So I just came out from the intracranial EEG monitoring yesterday, after 3 weeks in the EMU (apparently some sort of record, most centres have a two week limit for safety). I was there to help pinpoint epilepsy onset zones and make sure seizures and interictal activity always come from the same place, viz the right temporal lobe. I had 11 depth electrodes, mostly in the right temporal lobe but a few elsewhere as well (left TL, as well as right orbitofrontal lobe) , no grid. When I woke up from the implant operation, pain was managed with ibuprofen and paracetamol (400 mg ibuprofen and 1000 mg paracetamol combined was the only thing that worked for me, apparently they interact to reinforce each other, so try it if you are not responding). Expect a general headache, (intensity varies between individuals) and pain when chewing or opening your mouth, especially if a temporal lobe is involved! This gradually went down, and I stopped pain killers after about a week but I think I was lucky. Opening the mouth still difficult after three weeks, though! My surgery was due for 2 weeks after the implantation (so it was meant to occur during the same time as removal of the electrodes) but since I was kept another week. The surgeon removed the electrodes at bedside, with paracetamol and ibuprofen to manage pain. I was concerned of this decision but in the end I'm glad I avoided another general anesthetic. I kept one screw as memorabilia lol. So that was that. Everything went well! If you are eligible for this procedure it means the surgeons feel it is necessary (to pinpoint your epileptogenic zones, to map blood vessels,and/or to map your eloquent cortex or motor function parts of the brain). With this in mind you have to accept a small risk of infection, which continues till the electrodes are removed. Try not to scratch your skull under the bandages! :o) I now have to wait 2 weeks before my main surgery (a selective right temporal lobectomy involving right amygdala, hippocampus and pole). I have to say I'm stressed about it. :s

Comments

Hello, thank you so much for

Submitted by garmanino on Mon, 2017-04-17 - 14:58
Hello, thank you so much for sharing your story.  My brother is in the same boat, he is 29 and was diagnosed at the age of 12.  Medications helped him and he had two brain surgeries but the doctor thinks this EEG is his next step.  He is terrified of memory loss and thinks there are worst side effects to the needles going in... We are at a crossroad because the doctor says this is next or permanent disability.  I don't know how to help him or where to direct him... Thanks so much 

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