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: You prob will have to do

Submitted by ralphjunior on Sat, 2013-06-22 - 10:01
that really sucks about having seizures during your pregnancy.  update me on your situation as well.

Re: You prob will have to do

Submitted by LJF on Sun, 2013-08-11 - 10:18
Hi, I told you that I would update you on my situation. I was approved for surgery. Because I had the video EEG and a recent MRI, I didn't have to do those tests before they would look at my case. I found out the beginning of August I could get the surgery and it is already scheduled for September 6th. I have to do a psychological test that is 5 hrs and they apparently ask certain questions and go thru math skills, reading skills, etc. and after the surgery they will ask me the same questions to see if the surgery effected anything. The dr said he is 90% sure he already knows where the seizures are coming from but I have to get the surgical EEG to get the exact location of where they can take out. I have to get a functional MRI this week and they have you do certain acts and they record where that blood in my brain flows when I do whatever they are asking me to do. After that its just the pre-admission test and then the day of the surgery I have to get another MRI the day of surgery and then they do the surgery right after the MRI. The dr said I am going to hate him the first day cuz my head is going to be killing me and I will prob be throwing up. YAY! They do have to shave my head so I am not looking forward to that. They will implant 14 electrodes and a graph too and monitor that until they have the info they need to do the surgery. The dr said depending where the seizures are coming from I may have to be awake during the second surgery. There is no exact time frame for how long I will be in the hospital. The dr does surgery on tues and thurs and I am getting the first surgery on a thurs so he said I could potentially get the surgery the tues after that if they have enough info. The dr thinks it is coming from my secondary motor skills area and after the surgery, while in the hospital, I will have a therapist come see me to do physical therapy because the other side of my brain will have to take over my motor skills so it might take a couple days. I cant wait for this surgery to come and get better. The dr seems really positive about everything but it is hard for me to be completely positive and everyone is trying to make me feel better about me shaving my head but they just don't understand. Let me kno how you are doing and if you are getting anywhere with tests or anything else.

Re: You prob will have to do

Submitted by LJF on Thu, 2013-10-03 - 21:51
I haven't heard anything about what's going on with u. I am in the hospital right now implanted with wires for the surgical eeg. This is sooo painful! I got news today that the drs kno where the seizures r originating from n today I had to do more brain mapping to see if the area can successfully be removed n not affect anything else. They said they will tell me monday what the plan is n surgery will be tues. This has been the worst experience of my life n I'm praying they can get rid of the seizure area!

Sign Up for Emails

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