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Left Frontal Lobe Surgery Next Month without the MEG?
Fri, 07/12/2013 - 15:33Hi everyone-
This is my first post, and I just want to see if anyone is in the same boat as me. I am 31 and was diagnosed with epilepsy when I was 15. I have gone through periods of time when I was driving and years when, for some reason, the seizures were more intrusive in my life. I have tried and failed about 15 different meds, I'm currently having weekly seizures, and my incredible neurologist at Johns Hopkins finally said enough is enough. After undergoing monitoring at the EMU, they have determined that I am a candidate for surgery and that my seizures are coming from the left frontal lobe.
My doctor wants me to do a MEG test in Alabama, although this is considered experimental by my insurance, so they won't approve it. They are going to place grids prior to the focal resection, but he thought the MEG would be an even better way to pinpoint the focus since my seizures generalize so quickly. My biggest fear is that they will place the grids and that they will have to remove them after 2 weeks without finding the focal point of my seizures.
Has anyone had this happen before where they have had grids placed and later removed prior to the surgery without following through on the surgery itself?
Thanks~
Leslie
Comments
Re: Left Frontal Lobe Surgery Next Month without the MEG?
Submitted by LesliePC2003 on Fri, 2013-07-26 - 13:20
Hi Sonny-
Thanks for the reply. You've got it pretty much. They know it's left frontal but it spreads so quickly and nothing has shown up on MRIs (or any of the other tests over the years) just yet. I have enough seizures that they'll probably find something when they put the grids in, so your words are comforting.
Insurance just doesn't get it, I suppose! Thanks again. :)
Leslie
Hi Sonny-
Thanks for the reply. You've got it pretty much. They know it's left frontal but it spreads so quickly and nothing has shown up on MRIs (or any of the other tests over the years) just yet. I have enough seizures that they'll probably find something when they put the grids in, so your words are comforting.
Insurance just doesn't get it, I suppose! Thanks again. :)
Leslie
Re: Left Frontal Lobe Surgery Next Month without the MEG?
Submitted by rebekah1 on Mon, 2013-09-09 - 23:19
I'm getting nervous about it to some extent now that it is finally in process. I've been through all the video EEG, PET, MRI, Neuropsychological test and have been approved for the surgery. My doctors are at Duke. I have had epilepsy for 10 years and been on many many different meds.
I didn't know if you had any advice if you had the surgery. I have not had a MEG scan either. I do not have a clear lesion on the MRI for them to remove so they will be counting on the seizures I have once they place the grid & strips in to tell them the focus point. They have enough information to say left frontal lobe though.
Thanks
I'm getting nervous about it to some extent now that it is finally in process. I've been through all the video EEG, PET, MRI, Neuropsychological test and have been approved for the surgery. My doctors are at Duke. I have had epilepsy for 10 years and been on many many different meds.
I didn't know if you had any advice if you had the surgery. I have not had a MEG scan either. I do not have a clear lesion on the MRI for them to remove so they will be counting on the seizures I have once they place the grid & strips in to tell them the focus point. They have enough information to say left frontal lobe though.
Thanks
Re: Left Frontal Lobe Surgery Next Month without the MEG?
Submitted by srchaser67 on Wed, 2013-07-24 - 20:52
Hi Leslie In the year 2011 I went through test after test for almost two years. I also have had the LFLobe the location of my seizures since 1968 when I was a big 6 months old. I have heard of this happening with having the grids put in then can't finish through surgery. I might misunderstand though. They don't know the exact location yet? Because they knew that with me. When I went in for 4 days for tests earlier in the year. They lowered my meds and boom, I gave them the seizures they needed to locate everything. Then as we decided whether or not to do the surgery they now had location of my Focal point. So they didn't put the grid in me until 5 days before surgery. And during that week the grid was in and finalizing location. And that was the change of my life. It was a positive change on 4-6-12 . After looking at your story I see that this is an insurance issue. So being insurance won't cover the MEG and it's not giving your specialists info they need. It's making this a bigger risk. That's just not cool! I really wish you the best. Please let me know if I miss understand.