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Old 11-20-2002, 04:04 PM   #1
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Talking Keep Your Heads Up

I am a senior in high school and i was diagnosed with epilepsy when i was 12. The 1st doctor i went to did nothing for me but the second one did wonders and cured me. in 2000 i had brain surgery to remove a tumor. And since my surgery i have had 2 seizures. I had grand mal seizures. the doctors said i would not have been able to play sports for a year but i wanted to prove them wrong and i did!!!!! I am a captain on my soccer team we were ranked in state, i run track do very well part of the 4x8 team, and i run cross country, i am in ski club, and most important i am getting better grades. and i will be going on to college to play soccer. So people with epilepsy FIGHT the battle you will win, just believe in yourself that you can get through it. And parents your kids are strong let them know that. Best Luck to all of you

 
Old 12-04-2002, 09:05 AM   #2
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I am assuming your tumor was benign since it took so long to take it out. Are you still on meds? Cured of what? If you are still on meds and still having seizures, then I guess you are not cured of E. Where was your tumor - what part of the brain? My daughter has just been diagnosed with the same, 8 years old. Where did you go for the surgery? Thanks for any help. lazoo

 
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Old 12-07-2002, 06:53 AM   #3
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No i am still not on any meds, so i am cured of E and i am no longer having any seizures or symptoms of them. My tumor was on the left side on the top of my brain. I went to Rainbow Childrens Hospital in Cleveland. Excellent hospital doctors were very caring and they knew what they were doing

 
Old 12-08-2002, 07:36 AM   #4
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How long did they know you had a tumor before you had surgery? You said you had 2 seizures after surgery, was that caused by the surgery? How long ago did you have your surgery? Thanks for any help, lazoo

 
Old 12-08-2002, 09:24 AM   #5
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i knew i had the tumor for two weeks. yeah the seizures were cause by the surgery. i had my surgery 2 years ago

 
Old 12-08-2002, 10:49 AM   #6
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Just trying to understand. Does that mean you were originally misdiagnosed? What were you first seizures like? How did you decide to do the surgery so quickly? Trying to get up some courage for my daughter. Honestly though. Lazoo

 
Old 12-12-2002, 07:59 AM   #7
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What all kinds of tests did you do before the surgery? What was the name of your doctor? Did they biopsy? Did pathologist say anything? How big of an incision, etc. Anything you can tell me would be helpful. Thanks, lazoo.

 
Old 12-15-2002, 08:20 AM   #8
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I had grand mal seizures they were rather violent. My whole body was in motion and during one seizure i stopped breathing. Yes i was misdiagnosed for probably at least 2 years. My surgeon was Shanondoa Robinson (EXCELENT) She took the old MRI's and tests from which Dr.Amit had me take and he couldn't find anything. But Dr. Robinson took those same tests and found a tumor. She decided to have the surgery as soon as possible. So i trusted her and went along with it. How old is you daughter? I hope i am helping

 
Old 12-15-2002, 09:41 AM   #9
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Yes thank you so much for your reply you are helping. My daughter is only 8 years old. Where was your tumor at? Hers is in the left temporal lobe. Sounds like the same thing happened to her as to you. First doc missed it. Actually 3rd found it on same MRI. Thank you so much for the Dr.'s name as I will probably get a second opinion before I do surgery and wasn't sure where to go. Have read of about only 80% success rate with the surgery. Did they give you any indication as to what caused the tumor? Pathologist tested it, I assuming. How big was it? We are leaving in a couple of hours to head to the hospital. They will be doing VEEG this week and neurophych. test next week. Did they repeat your MRI? If so, did they use a dye? Hope you're able to respond before we leave as we may be gone for more than a week. Thank you so much for posting. You are the hope I'm hanging onto right now. lazoo

 
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