Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

do i have to go through another round of EEG video monitoring?

Thu, 06/20/2013 - 17:20

i 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: another round of EEG video monitoring?

Submitted by Silvergoldman on Fri, 2013-06-21 - 01:34
Sounds to me like they are using you as a lab rat. To me there is no reason you should have so much testing done. I've had epilepsy for 35 years (my whole life) and have had probably 5 MRI's total, one video EEG in the hospital, and I don't know how many regular EEG's, probably 10. They've never been able to tell me anything in terms of areas of the brain, even when I had an EEG that was also on video where I had seizures during it so go figure.

Re: another round of EEG video monitoring?

Submitted by ralphjunior on Fri, 2013-06-21 - 13:03
i hope i'm not a lab rat.  getting an MRI and regular EEG once a year doesn't seem so bad.  (i was getting the 2 MRIs a year during the period(s) when i would have 4 or 5 seizures a week.  sometimes several in one day.  none of the meds seemed to work until i got the phenobarbitol.)  like i said in the intro, i may be getting ahead of myself.  i already saw a neurosurgeon a few years ago and nothing really came of it. 

You prob will have to do

Submitted by LJF on Sat, 2013-06-22 - 08:22
You prob will have to do another video EEG. I am looking into surgery and have an appointment in 3 weeks n I hate waiting! Luckily I did a video EEG last yr so Im hoping that was recent enough and I just had an MRI. Ive had seizures for 20 yrs and during my pregnancy it got crazy and I had close to a thousand and my body just wont recover. Im not looking forward to all the pre surgical testing tho. My mris and EEGs all come back normal so if I am a candidate I most likely will have to have the surgical EEG and my dr told me a couple days ago that it feels like your head has been hit by a truck. Please update me as to what is going on with the surgery process

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.