The Never-Ending Story: Part 2

Continued from Part 1.

Trouble in childhood

Around May of 1998 my parents started noticing that I had been having staring spells or random motions (lip smacking, constantly blinking, chewing on my tongue, mumbling, and other things) and prior to these events I’d always complain about my stomach hurting. We talked with my pediatrician, this being the same one that had treated me for the meningitis and encephalitis at a year old. She quickly referred me out to neurology and let’s just say “let the tests begin.”

I had sleep studies, 24-hour video EEG monitoring, lab work (glucose and diabetic screening), and numerous psych tests. At one point I was told that I deserved an Academy Award because I was a great “actor.” At 12 years old, I was diagnosed with frontal and temporal lobe Epilepsy, not once, not twice, but three times, because doctors kept going back and forth saying it was all fake, or in their words, “an act.“

Searching for answers

I’d go the next 10 years having countless seizures, countless imaging studies (never the right one that was needed) and seeing numerous neuro doctors throughout metro Atlanta. Finally, saying to hell with them, I started doing my own research at 22 years old. I gave up on ever being treated and cared for appropriately. I transferred all my records to the Medical College of Georgia's Neuroscience Center, which is a Level 4 (highest ranking) center.

They finally diagnosed me with a traumatic brain injury (TBI) and found out that the whole right side of my brain was dead and not metabolizing sugar. The brain needs sugar for energy to send signals for the rest of the body to carry out all of the correct processes.

My brain was continuously misfiring or not firing at all. So when my brain, particularly my right side, would misfire (which it would do on numerous occasions throughout a single day), these misfires would send me into seizures. They ranged from drop attacks and grand mal (tonic-clonic) to absence and everything in between. Finally, on May 30th, 2008, I had most of the right side of my brain removed completely.

The story continues, but for now I'll stop here. I still have so many issues with my brain.