For Patient With Brain Disorder, Déjà Vu Was the First Sign That Something Was Wrong

Rodrigo Menezes is a brilliant software engineer and entrepreneur who moved to the United States from Brazil when he was 3 years old.  Now 28, Rodrigo was diagnosed with a cavernoma in his left temporal lobe in 2017. A cavernoma is an abnormal cluster of vessels with small bubbles filled with blood that resemble a group of berries. Rodrigo was referred to Alejandro Berenstein, MD, a renowned neurointerventionalist at Mount Sinai.

Dr. Berenstein, Professor of Neurosurgery and Pediatrics, Icahn School of Medicine at Mount Sinai, and Director of the Pediatric Cerebrovascular Program at the Mount Sinai Health System, advised a “wait and see” approach, monitoring the condition with an annual MRI. He also advised Rodrigo to stop scuba diving but said he could continue all his other normal activities. He introduced Rodrigo to J Mocco, MD, MS, an internationally recognized cerebrovascular neurosurgeon and Director of the Cerebrovascular Center for the Mount Sinai Health System.

In July 2020, Rodrigo started to experience frequent episodes of déjà vu. “Two or three times a day, a quick conversation or simply thinking in the shower would remind me of something I couldn’t put my finger on,” he said. “Ordinary sentences would be like a song stuck in my head that reminded me of a conversation or a movie or a show that I couldn't place. I tried to play the words backwards and forwards, as if I was trying to remember a song by getting to the chorus to see if I could recognize it. Whenever I did, the words would result in gibberish in my head. For example, on August 14, I wrote down "grooty mismeasurement teckldecklmint".

Rodrigo talked it over with his girlfriend but didn’t think it was anything to worry about. After all, he was often putting in late hours on his new venture and not getting enough sleep. But then, one morning he woke up surrounded by paramedics. They asked him questions—such as what season and what year it was—and he wasn’t sure. His girlfriend had seen him in convulsions and called 911. The paramedics told him that he had a grand mal seizure and brought him to a local hospital. He was released two days later and sent home with a prescription for levetiracetam, also known as Keppra, a medication to prevent seizures.

As soon as he got home, Rodrigo made an appointment with Dr. Mocco, who explained that the seizure was likely caused by the cavernoma, based on its location in the temporal lobe. Dr. Mocco advised Rodrigo that he had two choices: medication or surgery. To gain more information about the medication route, Dr. Mocco suggested that Rodrigo meet with Madeline Fields, MD, Associate Professor of Neurology, Icahn Mount Sinai, and Co-Director of the Mount Sinai Epilepsy Program.

“When she met us, Dr. Fields was incredibly kind,” Rodrigo recalled. “I had a 5:30 appointment, and she stayed with us all the way until 7 pm answering questions. She explicitly asked me about déjà vu, and I told her my story. I learned that déjà vu is a common outcome for partial seizures, so I might have been having multiple seizures a day!”

Dr. Fields increased the dosage of Keppra and asked Rodrigo to write down all the occurrences of déjà vu that happened during day. A pattern emerged. Rodrigo had déjà vu two or three times a day, and more often when he had less sleep. To get more information, she prescribed a take-home EEG, which measures brain activity. The results pointed conclusively toward the cavernoma as the cause of the déjà vu symptoms, as well as the seizure.

Meanwhile, Dr. Mocco scheduled a special MRI to evaluate the risk of surgery to remove the cavernoma. By asking Rodrigo questions in English and Portuguese during the procedure, they determined the cavernoma wasn’t in an area of the brain that governed speech comprehension.

Rodrigo wrestled with the decision as to whether to have surgery. On one hand, he had only experienced one major seizure. On the other hand, Keppra didn’t reduce the frequency of the déjà vu experiences, which he now viewed as possible mini-seizures. Also, with a winter surge of COVID-19 predicted, the window of getting an elective surgery might be cut short.

After discussions with his family, Dr. Fields, and Dr. Mocco, Rodrigo decided to go ahead with surgery. The surgery was scheduled for October 21, 2020. While his family and girlfriend were able to go with him as far as the hospital doors, Rodrigo had to go in alone because of COVID-19 restrictions.

“Fortunately, the Mount Sinai staff made up for that by being very thoughtful,” Rodrigo recalled. “All the nurses, technicians, doctors treated me very well. When I entered the operating room, I heard the Pixies, and the resident told me that Dr. Mocco likes to listen to 90s alt rock during the operation.’”

“I woke up in the ICU five hours later, and I felt great. I’m really grateful to everyone at Mount Sinai, who treated me so well.” Today, Rodrigo is recovering well, and was able to get off Keppra while staying seizure-free. The outlook is good. “Since the surgery,” he said, “I haven’t had a single moment of déjà vu!”