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Today is day 10 in the unit and just one seizure so far. But they've said if they only do get the one they can work with it, though one or two more would be nice. And I'm trying!!!!!!!! Off meds for five days, sleeping about five hours at night with no naps during the day. I feel high!!
Had an MRI w/contrast for the first time yesterday, and it gave answers that changed the direction a bit. Wish they had ordered the contrast two years ago, would have avoided speculation. Now they're not so sure about it being Hippocampal Sclerosis. It is actually my amygdala that's shot, and tho there is a very precise lesion there they're unsure of what, saying that there's a chance it could even be a low-grade tumor (GASP). She was quick to tell me not to freak out at that word tho, if it is a tumor it would be benign and stay benign, and possibly could have been there since the womb. Wow, don't think I'll be telling mom that part...!
Neither amygdala nor tumor had been mentioned ever, so it's been an eye-opening 24 hours to say the least. She figures the hippocampus may also have a slight bit of damage just b/c the two are basically on top of one another and a simple partial will involve both within milliseconds, but doesn't know how much would have to be cut out until they got in there. So, remove the amygdala and a bit of hippocampus. Sounds fun.
The one nice thing about the news is that it being the amygdala explains why my partials are fear-based. Having a reason like that is so, well, unnerving, but so securing as well. In 18 years I have never known why they're fear based, and unfortunately many of us never do get a reason. The cause of the damage is unknown, but having an answer as to why the type of simple partial does bring some relief. Any answer is a good answer.
That's the short version for now guys, all in all it's agreed, even preliminary, that I'd be a great surgical candidate. Seen a psychiatrist today, so all that's left on the list now is possibly having to take the WADA (oh pls no), which they'll decide on during their surgical meeting next month.
Thank you brain, I don't quite know what to say.
Had an MRI w/contrast for the first time yesterday, and it gave answers that changed the direction a bit. Wish they had ordered the contrast two years ago, would have avoided speculation. Now they're not so sure about it being Hippocampal Sclerosis. It is actually my amygdala that's shot, and tho there is a very precise lesion there they're unsure of what, saying that there's a chance it could even be a low-grade tumor (GASP). She was quick to tell me not to freak out at that word tho, if it is a tumor it would be benign and stay benign, and possibly could have been there since the womb. Wow, don't think I'll be telling mom that part...!
Neither amygdala nor tumor had been mentioned ever, so it's been an eye-opening 24 hours to say the least. She figures the hippocampus may also have a slight bit of damage just b/c the two are basically on top of one another and a simple partial will involve both within milliseconds, but doesn't know how much would have to be cut out until they got in there. So, remove the amygdala and a bit of hippocampus. Sounds fun.
The one nice thing about the news is that it being the amygdala explains why my partials are fear-based. Having a reason like that is so, well, unnerving, but so securing as well. In 18 years I have never known why they're fear based, and unfortunately many of us never do get a reason. The cause of the damage is unknown, but having an answer as to why the type of simple partial does bring some relief. Any answer is a good answer.
That's the short version for now guys, all in all it's agreed, even preliminary, that I'd be a great surgical candidate. Seen a psychiatrist today, so all that's left on the list now is possibly having to take the WADA (oh pls no), which they'll decide on during their surgical meeting next month.
Thank you brain, I don't quite know what to say.
