Has anyone had a 5-day EEG in a hospital?

Posted by tonyde @tonyde, Jun 10 11:24am

I am scheduled for a 5-day EEG in Tampa General Hospital. My first reaction was one of excitement; the first step to putting my seizures behind me. That excitement is turning into trepidation; everything from the impact on my health to impact on my wallet. There's a health risk to triggering a seizure and potentially a huge copay with a Medicare Advantage Plan.

Has anyone had one done? What's the good, bad and the ugly of a 5-day EEG?

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Profile picture for Dan Noyes @dannoyes

@restisaweapon, how did it impact you when you saw the seizure? I have to send my seizures to my Mayo doctors, and it is always startling to see their presentation.

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I think I just felt “woe so that’s what my people saw”. However I know that earlier in life my seizures were mild and sometimes even unnoticed.

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Hi - I have had 5 or 6 of them at NYU Langone. Not a big deal plus I had a penthouse room with amazing views of NYC. Also have done them at home. Someone mentioned the difference between an EEG and an SEEG. The SEEG was a bit horrifying. That is actual brain surgery in the sense that multiple "rods" are inserted in your brain to determine whether further more invasive brain surgery is viable. After two weeks with no seizures, despite no meds and sleep deprivation, the rods were removed. Unfortunately I had a blood hemorrhage followed by meningitis. After a complete work-up, discovered i had a rare autoimmune disease associated with GAD65. Went to Mayo for 3 weeks for a 2nd opinion on the GAD65. Unfortunately looks like there is no cure. So for me, EEGS are a pain, but no big deal. SEEGs are another story...considered relatively safe but can go awry.

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Profile picture for cathy5161 @cathy5161

Hi - I have had 5 or 6 of them at NYU Langone. Not a big deal plus I had a penthouse room with amazing views of NYC. Also have done them at home. Someone mentioned the difference between an EEG and an SEEG. The SEEG was a bit horrifying. That is actual brain surgery in the sense that multiple "rods" are inserted in your brain to determine whether further more invasive brain surgery is viable. After two weeks with no seizures, despite no meds and sleep deprivation, the rods were removed. Unfortunately I had a blood hemorrhage followed by meningitis. After a complete work-up, discovered i had a rare autoimmune disease associated with GAD65. Went to Mayo for 3 weeks for a 2nd opinion on the GAD65. Unfortunately looks like there is no cure. So for me, EEGS are a pain, but no big deal. SEEGs are another story...considered relatively safe but can go awry.

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Thank you, I've heard about SEEG and now I know to never have one.

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My wife had a one-hour EEG followed by a 24-hour EEG. Her turning in the bed and getting out of bed to go to the bathroom caused one or a few of the wires pasted to her head to come out. We called the nurse, who sent a technician to reattach the wires and restart the test. This happened 3 times. Does this happen to others? Is the test invalid if a wire becomes detached?

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I had a number of them at NYU. Not exactly fun but necessary for data. The worst aspect is if you don't have seizures despite ceasing seizure meds, often resort to sleep deprivation, etc. Bring something you enjoy doing without mobility. Have visitors! Realize you are on camera at all times (except thank God the bathroom). SEEG is much worse.

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I had the surgical procedure done in December 1989. 12 different rods where implanted. This was done at Alleghany General Hospital in Pittsburgh. The regular EEG's done showed activity near left temporal lobe. Two weeks of study produced no seizures. I went home on the 23rd. Christmas Eve, I had a seizure. The test showed no other areas of the brain that was abnormal. The 2-week study in the hospital was over $100,000. It was agreed to with the hospital that they would accept what my insurance would pay. Otherwise, I wouldn't have had it done. My hair came back, but not nearly as thick as it was prior to the procedure. It slowly thinned out and I'm practically bald in the area.

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Profile picture for joseph1963 @joseph1963

I had the surgical procedure done in December 1989. 12 different rods where implanted. This was done at Alleghany General Hospital in Pittsburgh. The regular EEG's done showed activity near left temporal lobe. Two weeks of study produced no seizures. I went home on the 23rd. Christmas Eve, I had a seizure. The test showed no other areas of the brain that was abnormal. The 2-week study in the hospital was over $100,000. It was agreed to with the hospital that they would accept what my insurance would pay. Otherwise, I wouldn't have had it done. My hair came back, but not nearly as thick as it was prior to the procedure. It slowly thinned out and I'm practically bald in the area.

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Speak with the hospital in regard to the expenses and will they accept what your insurance will pay.

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Profile picture for joseph1963 @joseph1963

I had the surgical procedure done in December 1989. 12 different rods where implanted. This was done at Alleghany General Hospital in Pittsburgh. The regular EEG's done showed activity near left temporal lobe. Two weeks of study produced no seizures. I went home on the 23rd. Christmas Eve, I had a seizure. The test showed no other areas of the brain that was abnormal. The 2-week study in the hospital was over $100,000. It was agreed to with the hospital that they would accept what my insurance would pay. Otherwise, I wouldn't have had it done. My hair came back, but not nearly as thick as it was prior to the procedure. It slowly thinned out and I'm practically bald in the area.

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I had a 4 day long EEG prior to my surgery to correct complex temporal lobe seizures. Also had cameras on me for that time. In my case they were trying to induce a seizure to confirm the seizures were emanating from the spot on the brain they identified. I finally had a seizure after three days that confirmed the spot was correct. Surgery was done to remove the spot and I have had no seizures since (17 yrs and counting)

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I had one several years ago. I wasn't at the hospital all 5 days, but because they triggered a seizure, the doctor told me not to drive for the normal posts seizure period (in WA, 6 months). Had it been in AZ, I would have kept my license because the law allows for doctors causing seizures. So if you normally drive, check state law to find out whether a medically triggered seizure will affect your ability to get around.

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Profile picture for Erika Schmidt @erikadschmidt

I had one several years ago. I wasn't at the hospital all 5 days, but because they triggered a seizure, the doctor told me not to drive for the normal posts seizure period (in WA, 6 months). Had it been in AZ, I would have kept my license because the law allows for doctors causing seizures. So if you normally drive, check state law to find out whether a medically triggered seizure will affect your ability to get around.

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It's 6 months in Florida, I had a really bad seizure last week, that put me on a 6 months no driving schedule

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