Seizure free after epilepsy surgery, patient pays it forward with advocacy

USF Health doctors evaluate for refractory epilepsy, experts in treating surgical candidates

Some people pay it forward by donating to a charity or working in a soup kitchen. Six years after her own epilepsy surgery, Letitia Browne-James found an even better way to thank USF Health neurologist and epileptologist Selim Benbadis, MD, and USF Health neurosurgeon Fernando Vale, MD. Browne-James volunteers as a patient advocate.

Singing the praises of Dr. Benbadis and Dr. Vale, Browne-James said the two were a couple of the most compassionate and skilled physicians she has ever worked with. “And, as a way to pay it forward, I wanted to help patients,” she said.

Letitia Browne-James

“I’ve used my education in forms of advocacy for mental health and social justice. I also use it in the medical field by trying to advocate for patients, and teaching them how to get educated and how to self-advocate,” the St. Thomas, U.S. Virgin Islands native said.  “Four patients who suffered from epilepsy – either because they heard my story, or I talked to them and helped them get to the right place — are now seizure free.”

“The delay for patients like Letitia to have epilepsy surgery is more than 15 years, so it is very important to have patient advocates speak up and educate patients about exploring options other than multiple medications,” said Dr. Benbadis, a professor and director of the Comprehensive Epilepsy Program at USF Health and Tampa General Hospital.

Suffering from epileptic seizures since she was a baby, Browne-James was diagnosed officially with epilepsy at age 12.  She suffered seizures throughout high school, college, graduate school and beyond.  After her 27th birthday, the seizures became increasingly violent.  The news at the doctor’s office wasn’t much better.

Browne-James suffered from epileptic seizures since she was a baby. She is pictured here at age 5.

“My doctor at the time said there wasn’t anything we could do, other than switching up the medication frequently. But that action didn’t help,” Browne-James said.

A licensed mental health counselor in Florida, Browne-James found a top-notch psychiatrist to see if she was having pseudo-symptoms, possibly pseudo-seizures. After a psychological assessment, the psychiatrist ruled out pseudo-seizures.  She instead was diagnosed with anxiety due to the seizure disorder and prescribed Xanax.

She had enough and began extensively researching the subject online.  Her Google searches led her to a new kind of a doctor: an epileptologist, a neurologist who specializes in epilepsy that’s hard to diagnose and treat, or refractory.

After an initial meeting with epileptologist Dr. Ahmed Sadek of Neurological Services of Orlando, Browne-James was diagnosed with refractory epilepsy.   

Dr. Sadek explained to Browne-James why years of tests had failed to show seizure activity in her brain. He put her through a different series of tests over a five day period on an epilepsy monitoring unit.  His conclusion: she was a perfect candidate for epilepsy surgery.

Browne-James, right, at her graduation from Charlotte Amalie High School in 1999 (in St. Thomas US Virgin Islands), with friend Yonette Francis.

During a phone consultation with physicians at Mayo Clinic in Jacksonville, they recommended that she contact Dr. Benbadis and Dr. Vale of USF Health because Dr. Vale was an expert in epilepsy surgery and performed it often.

“I thought ‘if the Mayo Clinic says these doctors are good, then they are for me,”’ Browne-James said.

After her initial visits with Dr. Benbadis, she underwent a series of medical tests.  USF Health neuropsychologist Michael Schoenberg, PhD, performed IQ tests to determine if Browne-James would maintain normal cognitive functioning after surgery. These tests were normal and also helped further determine she was an ideal candidate for the surgery.

She was ready to start a fresh chapter of her life.

Browne-James with husband Jonah James, Jr., at their wedding in 2008.

“I had no anxiety whatsoever about having brain surgery, because I knew the way my life was deteriorating from epilepsy could not continue. It would kill me, whether physically or from the emotional stress. I am very grateful to them,” Browne-James said.

Dr. Vale performed the surgery in August 2012, and Browne-James has been seizure free since.  In IQ tests following the surgery, Browne-James scored the same in some areas, but in some areas there were definite improvements.

This summer she will finish her doctorate online at Walden University in counselor education and supervision with a specialization in counseling and social change.  “Reading and comprehension come easier,” Browne-James said.  “My brain feels free, not clouded like it was before the surgery.”

“The reason her mind is clearer is two-fold,” Dr. Benbadis said. “No more seizures, and fewer or no medications. Seizure medications work, but often cause side effects like fatigue, dizziness and mental fogginess.”

An adjunct professor at Stetson University, Browne-James hopes her doctorate will open more doors to further research and teaching.

“My work in the medical field is not exclusive to epilepsy patients,” she said. “I want to get all patients to understand the importance of self-advocacy and being an informed patient.  It’s important to understand your doctor works for you.”