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do i have to go through another round of EEG video monitoring?
Thu, 06/20/2013 - 17:20i may be getting ahead of myself here because i'm not sure if they're going to suggest that i get surgery. i saw a neurosurgeon once. we talked for a few mins and it was decided that maybe it wasn't the right time.
(bear with me, i want to get some background out there.)
i've been having seizures since 2001. i went through long periods where i'd have several a week. each time i got new meds, my reaction during the seizures changed. my neuro put me on the pheno. seizure count started to drop. still, i went in for some video monitoring where they took me off the meds. i didn't take them at night nor the following morning. during the middle of the day...BOOM!!! i had 4 seizures. one of them was a full out grand mal and i even pooped myself and bit my tongue. they actually wanted me to have another seizure and i said that i wasn't really down with the idea.
the next 2.5 years were seizure free. it seemed like the combo of meds worked. pheno/lamictal/keppra. then the seizures came back. i had probably one a week (complex-partial) for several months. as usual, the reaction changed while on this combination of meds. for that period of time (maybe 9 months) i'd get an aura, i'd black out and then i'd come to somewhere else feeling that i was about to die. (sometimes i'd take the bus to a different neighborhood while blacked out.) the fear was terrible. the amount of keppra was increased and i've been seizure free again since november 2011.
i used to get an MRI twice a year, but when the seizure activity started to decrease they changed it to one MRI a year. the results always come back the same. no changes in the lesion. i had my last yearly MRI about 3 weeks ago. normally the people look at the results and send me home. this time they had me wait while they took the results to the neuro. i waited about 20 mins. then they said i could go. a week after the MRI i get a call from the neuro's office recommending me to make an appointment with a neurosurgeon to "discuss options". i told the guy, "look, i know you're not supposed to disclose bad info over the phone, but i had an MRI a week ago and now you're telling me i should see a neurosurgeon?" he said that it was nothing to be alarmed at.
(don't worry, i'm getting to the point of this thread in a minute.)
the appointment was set for 15 days later. it sucks to wait that long. still, i'm sure the only reason they would call me is to say that since things are looking good, perhaps i should have the surgery so that i can eventually come off of medication.
finally, the question:
do any of you think that they'll have me go through the eeg video monitoring again? i've already done it once. i really do not want to go to a hospital again so that i can have seizures. i'm scared that since it's been over 5 years they'll make me do it again. i know you have to go through several tests, but c'mon. another round of seizure monitoring? i hope not.
thoughts?
Comments
Re: You prob will have to do
Submitted by ralphjunior on Mon, 2013-10-07 - 17:08
Re: do i have to go through another round of EEG
Submitted by just_joe on Mon, 2013-10-07 - 22:04
I haven't even thought of surgery but Doc had me go thru a eeg which I wore at home for a weekend.It gave him information which he used and changed my medication. I was also in a monitoring unit for 3 days without medications. He had a wonderful assistant that had forgotten I smoked until the last day. I had an MRI the same day. I found out he was thinking about the option of surgery but he also found out the scar tissue I have is in more than 1 lobe. I'll work with medications and I would have had to think very hard and discuss this with family. I do know there have been many people helped with surgery and I laso know it will not work on everybody
I also know that the EEG you may be getting may not be the one used for surgery.
Good luck and I hope you will get siezure free
Joe
I haven't even thought of surgery but Doc had me go thru a eeg which I wore at home for a weekend.It gave him information which he used and changed my medication. I was also in a monitoring unit for 3 days without medications. He had a wonderful assistant that had forgotten I smoked until the last day. I had an MRI the same day. I found out he was thinking about the option of surgery but he also found out the scar tissue I have is in more than 1 lobe. I'll work with medications and I would have had to think very hard and discuss this with family. I do know there have been many people helped with surgery and I laso know it will not work on everybody
I also know that the EEG you may be getting may not be the one used for surgery.
Good luck and I hope you will get siezure free
Joe
Re: You prob will have to do
Submitted by mereloaded on Fri, 2013-10-04 - 17:33
Good luck on your surgery! Please write an update when you can. Prayers and best wishesZ,