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Has anyone had the strip Intracranial EEG?

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: Has anyone had the strip Intracranial EEG?

Hi Carrie,

I've been there. My reason wasn't due to a tumor, just a scar deep inside the brain. All of my tests showed seizure activity, however, they were unsure whether the area could be safely removed. Since I was quickly running out of medication options, and my seizure disorder was refractory, I didn't feel I had much to lose. I agreed with the epi's surgery decision and quickly went through the whole process.

Intelligence testing, PET scan, MRI's (one was day before surgery, very precise and focused on my left temporal lobe area), SPECT scans were done. Then, I went in for the intracranial monitoring. I had depth electrodes and grid electrodes implanted to see precisely what area/s was focal point. I had a reaction to one of the anesthetics used and vividly recall waking in the recovery room. I woke, with intense pain, puting my hand to my head (which had a HUGE bandage on it). A second later, I was struck by major nausea and vomited (sorry, if tmi!).

I was in and out of it for several hours after that first surgery. I had my seizures early the next morning for everyone to view. A nurse was in the ICU room 24/7, and the nurse questioned me on all kinds of things when seizures struck. In another room, EEG tech's sat and watched activity. Every time seizure activity was seen, they'd call my room nurse to tell him/her. After the doctors saw 3 seizures (the day after my intracranial surgery), they came in to tell me the news. They thought that I was an excellent candidate for focal point removal and decided to do surgery the next day. In the meantime, my meds were started again.

I was fine for that night...though I don't remember much of it. I do remember waking around 4 am to seizures. They began as simple partials and became both more frequent and more intense as time passed. By the time my hubby arrived at the hospital, around 7:30, my seizures were practically non-stop. 20 minutes followed by another 30 minutes (without regaining awareness) of complex partial status epilepticus. It was pretty crazy. Of course, I have no recollection of those last seizures, because I was out of it. What I do recall is a very strange sensation as I was getting hit by those darn seizures constantly. I was emotionally and physically exhausted.

The next thing I recall is waking a few hours after the second surgery. I was back in my ICU room, being monitored by the nurse 24/7. I felt very strange. I was in a lot of pain and I was weak. The next morning, I was sent into a regular room for recovery. Things went fine for the most part. Unfortunately, nothing controlled that intense headache of mine. Not very unusual..I was in the 33%ile. The pain did ease for me as time went by. It took about 6 weeks to be gone.

My left eye became "lazy" from the surgery. I had to keep my right eye closed at all times to strengthen it up again, which took 3-4 months. Strong emotions became noticeable a couple of weeks after the surgery, huge ups and downs within minutes of one another. The emotional teeter-totter became noticeable depression about 3 months after the surgery. Jaw pain was another biggie. That was *very* intense for the first few weeks. It very slowly eased, and was gone about 5 months after the surgery.

I hope that my response doesn't sound super-negative. I don't regret my decision at all. My seizures are under control. I have had a couple of light deja vu's (3 or 4) since surgery, but nothing else. And I haven't had anything for 3 months or so now, despite lowering my med...that's encouraging! It has not been an easy road to travel. I had more side effects than the average Joe, and I still don't regret my decision. It was the right thing for me to do. I hope this helps, and wish you the best. Take care!

Heather :)

Re: Re: Has anyone had the strip Intracranial EEG?

Thank you for your wonderful information! They did the whole routine on me but did not implant electrodes on the brain. The EEG was obvious apparently for them. They removed the ant. temporal lobe - 1976. My seizures were still around but were embarassing. I would hug people, squeeze things, dart out of a shower, etc. My neurologist decided I needed another surgery in 1991, I seized right after the surgery. My husband came in and I did not know his name and I gave him my bosses name. I worked for 15 years as an EEG tech. but when I got pregnant my seizures went out of control again and now. I do not know what to do. I now have flurries but some docs think they are interesting on the EEG and one said oh you need more surgery. I told him, I' ll think about it.

I got deja-vu's after my first surgery. My vision in my left eye is bad and I have good vision in the right. They told me the area that I have blindness from my surgery.

Do you have any children? I have a 13 year old and a 10 year old.

Re: Re: Re: Has anyone had the strip Intracranial EEG?

Hi tonialpha,

I appreciate you writing, as well! Yes, I have 3 kids, ages 11, 7, and 6. I don't know how I could handle the headaches after surgery with all the noise in the house! ha
I'm not sure about one surgery; I don't know how you could go through two and possibly a third! You're brave.
I wish you all the best!

Re: Re: Re: Re: Has anyone had the strip Intracranial EEG?

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.

Re: Re: Re: Has anyone had the strip Intracranial EEG?

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?

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: Has anyone had the strip Intracranial EEG?

Hello Carrie,

The intracranial monitoring requires brain surgery. The only difference is that they aren't removing any of the brain matter. It is a very major surgery. The reason my monitoring didn't last very long is because my seizures kicked in so quickly. Everyone expected it to take at least a couple of days for my seizures to begin.

I had agreed to take part in a study, but I wasn't even hooked up to their special machinery before the seizures began! So, they were all pretty surprised. I've read that anesthesia has anti-seizure effects, but it didn't work that way for me, LOL!

My husband was allowed to be there at all hours, but he tried to be at home with our girls as much as possible. Our girls were 3 1/2 and 1 1/2, and very attached to me, he didn't want to make it even harder for them. As a result, I was alone much of the time (which certainly didn't help me emotionally) but I didn't want our girls to suffer even more. My hubby was there during my surgeries, but in the waiting room.

Heather

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