Phase 2 testing for surgery

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seizures4ever

seizures4ever

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Hi guys,

It's been awhile since I've posted, but the last 4 years have been rough. Anyway, I'm trying to find out if I'm a candidate for surgery, and I've been told I need Phase 2 testing...invasive electrodes, grids, etc.

I've done some reading on these tests...and they scare me more than the actual brain surgery.

Has anyone had these tests done? We've had five deaths in our family over the last few years, and while I need the seizure control, I have to weigh the risks...I can't leave my little boy without a mama.

Thanks for any feedback! :)
 
Yep, that test scares me more than the surgery too. I don't have anything to offer, I'm afraid. I'm also looking ahead to a resection--and not backwards at one that's been done. Have you looked into the mortality rates of the particular type of surgery you'd be likely to be having? I don't know whether this sort of risk is one you play using numbers but it does, at least, help to know what you're facing. It might also help to look into the mortality rates of the particular surgeon you'd be dealing with.
 
seizures4ever:

Hi, I'm at the same stage as you right now, and I think we're feeling similar emotions. I'm scheduled to go in for fiducials on July 7 and the depth electrode placement on July 11. We have 2 young daughters, and I feel the same way, I couldn't leave my wife as a single parent, as well as having my girls grow up without a Daddy.

I've had WADA, MEG, PET, Neuropsych, and 2 stays in the EMU in the past year. The last test the epileptologist and neurosurgeon want before going ahead with the electrodes is fMRI. (I suffered a head trauma in 1987 and I'm not fully lateralized yet, they want to be sure they can proceed).

Anyway, as things progress I'll post more. It is scary and I think I can understand what you're going thru right now.

Anyone else out there have history with Stage 2???
 
When I started this "journey" I began a blog/website for my own mental health. I'll put the link below, I hope the info on it can help others going thru this...

(the live link won't work since I'm new, so I have to put it in with extra spaces)



danepilepsy . weebly . com
 
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