Joshua’s Story: How brain surgery changed his life

Part of my research involves learning more about how brain surgery can be used as a method for treating epilepsy, or recurrent seizures, by learning about one patient’s personal experience with it. My cousin, Joshua, was diagnosed with epilepsy at the age of 4 months, and I spoke to his mother to learn about his story.

The corpus callosotomy is not the only surgical option for the treatment of seizures. The type of procedure depends on where in the brain the abnormal electrical activity is taking place. In Joshua’s case, a Temporoparietooccipital (TPO) resection was necessary in order to bring a stop to his epilepsy. This means the removal of the temporal, occipital, and parietal lobes of the left hemisphere of the brain. This would eliminate the abnormal brain activity in those lobes that was causing the seizures.

Joshua was only four months old when the seizures started. They were a result of a massive stroke that occurred while he was in utero that killed the temporal and occipital lobes of the left brain and left Joshua with impaired verbal and motor skills. Stroke is one of the major causes of epilepsy in addition to other traumatic brain injuries or genetic disorders. The electrical brain activity causing the seizures was taking place in between the healthy parts of Joshua’s brain and the parts that were compromised by the stroke. These seizures would occur at least once a day, but on a bad day there could be up to 15. They started as “drop” seizures, which is characterized by massive convulsions and muscle spasms. As Joshua got older, they evolved into mostly “staring” seizures where his eyes would suddenly stare to the right, and no one would be able to snap him out of it until the seizure had passed. Joshua used a variety of expensive anticonvulsant medications to treat his epilepsy, including one called Keppra which sometimes resulted in longer and more violent seizures.

Eventually Joshua’s seizures became to frequent to treat with only medication, so an Epileptologist recommended brain surgery as a possible treatment. Joshua underwent a 48-hour electroencephalogram (EEG) to monitor his brain and identify where in the brain the abnormal activity was happening. The results confirmed that the seizures were coming from the part of the left hemisphere where the stroke had happened, and the Epileptologist concluded that Joshua would be an ideal candidate for a TPO resection surgery. The possible risk factors of this procedure were loss of speech or another stroke, but considering Joshua already suffered speech impairment that made him almost impossible to understand, it was decided that he should try the surgery.

Following the procedure, the results were immediate. Joshua seemed more focused and stopped experiencing seizures. Joshua is now nine and a half years seizure-free, and he hasn’t experienced any negative side-effects. Not only did his speech stay intact, but it actually improved considerably, giving him a better quality of life. The space where the lobes of his brain used to be is now filled with spinal fluid, which does not cause any harm, except that flying on planes is no longer an option due to the high altitude causing too much painful pressure in his head. Joshua is no longer on any medication, and has been officially discharged from the Neurologist. This surgery changed his life, and his family fights to raise awareness for children with epilepsy.