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Long Term Stay
A MyEpilepsyTeam Member asked a question 💭

Hi-

I was wondering if anyone has had more than one long term stay to have a seizure to map them out? My husband had one a year ago but no seizure while in the hospital. He wants to go back in but I was looking for some feedback.

Thanks!

posted March 4, 2020
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member,
The only error was they thought they were just removing the scar tissue. After they opened me up they realized part of the Hippocampus was damaged.
I thank God every day they removed the whole lobe. I signed concent forms prior to the surgery in the event something like that happened. I was having 30-40 Partisl Complex seizures a day. Plus over 5600mg of meds a day.
It saved my life and I would do it all over again. Yes I face challenges but I can talk about it. Testing has come sooo far since that time.
I have had no Partial complex since December 13 1994. On the left side genetics. Primidone controls left side. Hugs and if you want more info do let me know. Wendy

posted March 4, 2020
A MyEpilepsyTeam Member

When I had my EEG and brain mapping done , it took 8 days. Most of the reason was that they couldn’t get any big seizures for the mapping test and they had me down to no meds . My doctor came to visit me and having me choose something, like a beverage or food that I know , will trigger me to have a big seizure. After picking my poison ☠️ , I finally went into a very big convulsing seizure . When I came out of my seizure, I was surrounded by 6 or 7 hospital staffs. My Dr. came later to tell me , that I finally gave them what they needed.

posted March 5, 2020
A MyEpilepsyTeam Member

I had my testing done in 2003. After 2 weeks and no results being off meds, and insurance not covering any further testing. Doctors sent me home. (of course after getting back on my meds and going home, I had a seizure right away) The second time I went back it took 33 days and they finally saw me seize. They still needed to surgically place electrodes on my brain to pin point exactly where the seizures were starting to remove that area to prevent seizures. Seemed like one obstacle they wanted didn't give them enough information, and another was added on. And all of the testing to see where my speech and memory would be effected.

posted March 5, 2020
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member,
They had to see what my memory would be without the Right Temporal Lobe. First time they froze too much. Grrr Finally got it the second try.
They knew there was scar tissue on the right side from Enchphilitis. They also had to freeze my jaws once a week and they placed this tiny tiny wire on both sides. That really left no doubt as to Focal Point.
By the memory testing they knew my left Temporal Lobe was dominate. They kept me up all night to deprive me of sleep. Then another Spec Scan. Back in 1994 you had limited testing.

posted March 4, 2020
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member,
I had a 3 month stay back in 1994. Testing has come so far since then. They mapped my brain out. First I was hooked up 24-7 to monitors, and they quickly found out where the Focal Point was. That means they exactly figured out what part of the brain the seizure was coming from . Right Temporal Lobe.
The next step with me was locate the speech center. Thankfully on the Left Temporal Lobe. Then I had a grand mal and its focal point still right. That is when I had a Spec Scan. That lit the right side up and they knew. They operated on the right side.
Then came the memory testing. They froze my hip and placed a tube that went from hip to neck. They basically froze my right temporal lobe and I passed. Plus they confirmed the speech was on the left

posted March 4, 2020

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