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Are my seizures as rare as doctors say?
Tue, 11/21/2017 - 11:11Topic: Share Your Story
My seizures began when I was 13 and at that point the neurologists had no clue what caused them. I was having everything from grand mal to simple complex. Finally we found a much better doctor and discovered that my seizures come from both sides of the brain. The doctors said they have never seen my condition before so this means they can never be cured. Has anyone ever heard of this disorder?
so it isn’t clear what rare
Submitted by Amy Jo on Sun, 2017-11-26 - 15:57
so it isn’t clear what rare/unusual situation you have... sounds like partial seizures with multiple focal areas but if you mean something else, probably need to elaborate more and use the medical terminology one would find in your records. it is possible to have surgery on multiple focal areas but doesn’t work in cases like HM, Henry Molaison, or in other specific cases. can’t think of what you mean by curing epilepsy if you don’t mean surgery. if there are visible lesions on your imaging, there is a higher chance of refractory seizures. one can still try medication, diet and more limited surgery. RNS might also be an option if there are two major focal areas.