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Has anyone had the strip Intracranial EEG?
Sat, 11/25/2006 - 14:43Topic: Surgery and Devices
Hi,
My epileptologist wants me to have an intracranial eeg (the one with the strips). I've been thinking about having surgery, but I'm not sure now considering I'd have to go through this test. The thought of holes drilled all over my head isn't very appealing. I was told three years ago that I have a tumor in my right temporal lobe. I've had numerous surface eegs, and the only one that shows any activity at all shows more seizure activity on the left side of my brain. For some reason, my brain knows when I'm hooked up and decides to act normal. ha
I had a VEEG in '03. They took me off my meds and gave me Benadryl to induce seizures that time, and it finally worked. My actions during those seizures appeared to be left sided. The eegs, though, show sparks on the right during the beginning where the lesion is but then a lot of activity on the midline and left side of my brain. The little sparks don't give my epileptologist enough comfort to order a surgery with a seizure protocol, even though she feels they are just quickly jumping across once they start. The seizures are starting so deep inside my brain that they haven't been able to get the hard data she wants, so she wants this intracranial thing to give it to her.
Here's the deal. I don't want to have surgery if it's going to be a straight tumor surgery. The tumor is dead. It doesn't scare/bother/concern me at all. I never think about it. The seizures bother me. The ones I have happen maybe 1-2 days out of the month and are like partial partials, if that makes any sense. I just feel weird and will panic and gag for about 15sec - 1 minute. On the worst days, it'll happen off and on all day.
Anyway, if it'll be a tumor resection with a seizure protocol surgery, I'll consider it again, depending on what this test is like. They can't tell me without this test, though. They have to know where they start in order to tell me if they can take out all of the area surrounding the dead tissue.
Can anyone tell me what it's like? The more detailed info the better. The docs can only tell me so much, but they've never experienced it. I need to talk to someone who has.
Thanks,
CarrieB
Comments
Re: Re: Re: Has anyone had the strip Intracranial EEG?
Submitted by mommy2kyra on Sat, 2006-11-25 - 22:55
Hi tonialpha,
My goodness, you have been through a lot! Gosh, I don't know if I could go through it all again. Especially with children to care for. My girls were 3 1/2 and 1 1/2. Thankfully, things weren't too bad on the younger one (Lena). However, the surgery was very difficult on my 3 1/2 year old (Kyra). She was mad and scared for a few months. That whole thing made it even tougher on me emotionally. A week before my 3-month follow up testing Kyra finally became herself with me again. I was *so* happy!! The day I went back to Mayo for my outpatient testing changed her back to that previous state. HORRIBLE!!
That whole struggle has been incredibly painful and difficult for us to overcome. While I can certainly understand how Kyra feels, it doesn't help us get through and over it. I avoided the same situation coming up again on my 6-month visit by going alone. I said that I was going to the doc and came back later that day. Unfortunately, that wasn't an option at my 3-month since I couldn't drive yet.
It has been 7+ months now, and I look forward to all of this being behind us. I hope and pray that decent detection, care, and society understanding come about soon. I hope that your docs find a decent way to care for your sz's quickly! (((hugs))) and best wishes!
Heather :)
Re: Re: Has anyone had the strip Intracranial EEG?
Submitted by carrieb on Sat, 2006-11-25 - 20:20
Hi Heather,
Thanks for responding. The 'second surgery' was the actual brain surgery, correct? You only had the intracranial monitoring for a day or two? My doc said something about a week, but I think if they got the info they needed within a day or two, they'd pull me off the machine. So, your husband wasn't allowed in the ICU with you at all during the intracranial testing? That's one of the things that scares me about the test. I haven't had the chance to talk to the neurosurgeon about it yet, so I don't know if my husband would be allowed to be in there with me. That's one of my concerns, though.
I hope to hear from you again.
Carrie
Re: Re: Re: Re: Has anyone had the strip Intracranial EEG?
Submitted by tonialpha on Sat, 2006-11-25 - 20:39
I appreciate your note. I try to keep busy and volunteer when I can. You are definitely busy, with your family. That is a stretch of the brain. I am grateful for mine. When they are busy, I am busy too. If I have an episode, I keep going. Right now I am preparing for Sunday School and I am in a play w/ the children for Christmas. Did I tell you mine were 13 and 10. I think I did. Preparing for other things I forget, like anyone else. I have to kick myself and remind myself I am just as intelligent as the next guy. I just may have to try harder at times. Hope your Thanksgiving was a good one.