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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 mereloaded on Fri, 2013-10-04 - 17:33
Good luck on your surgery! Please write an update when you can. Prayers and best wishesZ,

Re: You prob will have to do

Submitted by ralphjunior on Mon, 2013-10-07 - 17:08
hi! i never updated because i forgot about this thread. basically i didn't have to do the entire video EEG. i actually got a lumbar puncture, but the insurance would only cover it if i had the video EEG done the night before, so i could be admitted. so...since the video eeg was only mandatory for insurance purposes, i didn't have to stop taking meds. i just chilled out the night with the electrodes on my head for the night. here's my latest update. the extra MRI, the lumbar puncture, all of these tests were because a few months ago they found that the lesion has a mass around it. they wanted to do every test possible before giving me a brain biopsy. this thursday i finally get to sit down with the neurosurgeon and he's going to explain all of the technicalities of the biopsy. then i will schedule it. i'm a little bit scared because my regular neuro and the neurosurgeon think it's a low grade tumor. it's a bit overwhelming to listen to them because normally i flow from happy to existential without giving regard to bad news. when i started hearing the words "chemo" and "radiation", it freaked me out for the first time in my life. i started looking up how much it costs to freeze sperm. then, just from reading about low to high grade tumors, it seems like there's a possibility that my life will be dramatically shortened. i'm still trying to process all this. they also told me that surgery for the lesion is out of the question because of the location. the neuro wasn't even sure that the neurosurgeon would give the okay to the biopsy. we'll see what they tell me thursday. i'm not scared of the biopsy yet. i'm more scared about what happens after that.

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

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