I entered avm and here I am...Im 48. At age 25 I had my first gran mal seizure. The mri found an avm - technically my neurologist, a physician at mount sinai in new york city MISDIAGNOSED me...I have the original paperwork. He told me I had a meningioma the size of a tangerine...I was correctly diagnosed after being in a coma. I decided to have brain surgery to avoid the problems related to severe epilepsy. I had the surgery at didnt go well. I ruptured a berry aneurysm on the opposite side of the head...what was supposed to be a 6 hour surgery turned into a 14 hour surgery. The doctors told my mother that I wouldn't pass the night...then I appeared to be paralyzed on the right side...I was in a coma for a month. The avm was on the speech centers of the brain, so I lost the ability to speak until I re-built new speech centers on the opposite side. The epilepsy didn't go away...actually it got much worse. I tried every medication on the market and some not on the market, yet...I developed status epilepticus, which I had 5 times AFTER the surgery. Obe of those times I was in intnsive care at bellevue hospital in nyc for 6 days. Then bellevue tried to cure me, but after a year they told me that they couldn't help me. I was referred to another neurologist, but I had been on EVERY medications and every combination of medications...I went to see another neurosurgeon to have a second brain surgery. That same week I was offere the post clinical trial of anew medication, lamictal. Lamictal reduced my seizures from daily to one seizure every 3 months. I'm now taking keppra and my seizures are one every 9 months.
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1 Response Jan 15, 2013

good luck, you are one brave chick

well I have had back surgery and the implications meant I could have been in a wheelchair and i need another operation. people say I am brave !!! I say your brave because of your operations and the implications you had to face !!!