My brother, DJ, and I went on a fun road trip to Boston, Massachusetts to visit his best friend. We left to return home on 5/29/2013. That was the day before my first seizure.
Traveling home, I didn't feel right. All of a sudden I had a headache and felt dizzy whenever I looked through the car's windshield. The only way I felt relief was to close my eyes or turn my sight towards the shoulder of the road. By the time we reached Connecticut, I spent the remainder of the trip with the seat reclined and my eyes covered with a baseball cat. Once I got home, I unpacked my luggage and went directly to bed.
The next morning, my pants were wet, my tongue had red and purple marks, and I was confused. My mom called my primary care doctor to describe the after effects of what happened, and was told to go to the ER. The diagnosis we received from the doctors was that I had a seizure.
After 2 years (2015), I refused to acknowledge that I was still having seizures. The Delaware neurologist had prescribed many combinations of medications until the day I had the first grand mal seizure. I do not remember much from that day. My first memory was in the afternoon, after noticing my tongue was aching and seeing family members were nearby while I was being loaded into an ambulance. An EMS team member repeatedly talked to me during the transport, saying "Honey, honey are you okay?" I still felt a bit confused while laying in the hospital bed. I recall my parents saying that I needed to call out from work. I didn't want to because I still thought I would be able to go to work that day.
Not long after that episode, I was referred to Dr. Michael Sperling, at Thomas Jefferson Hospital in Philadelphia, Pennsylvania. My first visit was on 7/7/2015. My family members showed up in full force. There were nine of us in the exam room when the doctor entered. During that visit, Dr. Sperling explained the results of the CAT scans, EKGs, EEGs, and MRIs. He stated that I had an encephalocele, which was a gap in my skull where brain tissue had pushed through. He strongly suggested that I have surgery. The procedure was called a frontal temporal lobectomy. I decided to have surgery, which was scheduled for 12/10/2015. I recovered enough to reclaim my driver's license and return to being independent.
Everything had gone relatively well until 12/11/2016, a year and a day after the surgery. My mom said I had an absentee seizure where I was conscious but was unresponsive and my muscles were stiff. After having more MRIs, EEGs, and psychological testing, Dr. Sperling and neurosurgeon Dr. Wu conferred and said that a second surgery was strongly suggested. I was scheduled to have a temporal lobectomy to remove a chunk of gray brain tissue, which was the size of a plum.
The frontal temporal lobe affects memory, personality, and social interactions. It is a critical section of the brain for everyone regarding our cognizance. The operation to treat the encephalocele had a recovery period of 1 year. The second surgery consisted of the removal of a larger section of my brain and had a recovery period of 1 year in regards to physicality and 2 years regarding mental recovery. My recovery was quite depressing. My long-term memories were intact, but expressing my thoughts or feelings was really difficult. Itv appeared that facial expressions gave more description of my feelings than my words did.
Had it not been for the familial support, had it not been for the class A care from the Jefferson neurologists, the vast amount of support and invaluable information that I received from the Epilepsy Foundation of Delaware (EFD), I would not have celebrated reaching 5 years seizure-free. I am anticipating celebrating my anniversary of being 6 years seizure-free on 10/26/24!
My recovery with social interactions is still an ongoing process! Val, at the EFD, has helped me poke my head out of my shell by inviting me to social events/gatherings. I just want to show others who may relate to my experiences that you are not alone. You and your loved ones will get information and social support from the great group of people at EFD! The work that they do behind the scenes is life-changing. It has been that for me!
