Epilepsy Patient Receives the Kind of Care Worth Talking About

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Ricardo Alvarado’s first four years with epilepsy were marked by a lack of communication: A lack of communication on the part of his neurologist, who rushed through their appointments without taking Ricardo’s concerns seriously. A lack of communication with his family, as Ricardo, then 25, tried to downplay his condition. And a lack of communication with most people in his life about the seizures he was experiencing on an almost daily basis.

“My mentality was that this is something I can be judged on,” he said. “During those four years, I never spoke to anybody about epilepsy. I feel like if I had had one or two people to talk to about this, that would have given me the inspiration to look for the care I needed.”

Instead, Ricardo found his care team at Hoag’s Pickup Family Neurosciences Institute only after a grand mal seizure left him with a dislocated shoulder. In the hospital at Hoag, following a surgical repair of his shoulder, Ricardo experienced another violent seizure. Again, he tried to downplay it, but he was surrounded by medical professionals who urged him to seek care.

Ricardo was reticent because his first experience with a neurologist at a different hospital led him down a medication path that left him depressed and suicidal.

“I stopped taking the medication, but she just wanted to put me back on medication and add more medication to deal with the depression,” he said. “I stopped seeking help because I felt like I wasn’t being heard.”

During that time, Ricardo managed on his own, getting rides to and from work, paying close attention to his diet and sleep, and sticking close to his apartment in Huntington Beach. But focal seizures, light seizures that Ricardo describes as fleeting, still struck. Sometimes he’d experience two or three a week, sometimes they came on two to three times a day.

“I got more anxious,” he said.

Then, one morning in April 2020, Ricardo woke up on his downstairs couch – though he remembered falling asleep in his bed upstairs the night before. His arm was sore and bruised. He had somehow gone downstairs in his sleep and dislocated his shoulder. Following his surgery, the seizure at the hospital and three more seizures at home, Ricardo realized he couldn’t put off care any longer.

“They treated me wonderfully during my shoulder treatment, and that’s why I wanted to stick with Hoag,” he said. “From the beginning, the neurology team at Pickup Family Neurosciences Institute has done an amazing job.”

In particular, Ricardo noted how attentive both David Millett, M.D., Ph.D., and Vik Mehta, M.D., were when he described his experiences and his concerns. They answered his questions, thoroughly explained his options, and bridged language barriers with his Spanish-speaking parents by using plastic displays of the brain to explain what was happening to Ricardo and how they could help.

“In those four years before, I had completely lost faith in neurologists, but Drs. Mehta and Millett were really understanding,” he said.

Dr. Millett was able to prescribe him a medication that did not carry a side effect of depression, and he and Dr. Mehta explained a surgical option that would ablate, or destroy, scar tissue in his hippocampus that was causing his seizures.

“That was rough,” Ricardo said. “Any procedure involving the head – it was not an easy decision to make.”

Ricardo consulted a few other experts and his family, then decided to undergo the procedure.

“Medication can decrease the seizures, but the surgery would fix the problem,” he said.

Hoag is one of the only hospitals in the country to offer minimally invasive surgery to treat epilepsy using precise 3D guidance with the Medtronic Stealth Autoguide Robotic Platform. But that’s not what impressed Ricardo. What impressed him was the level of communication he experienced from Hoag’s team.

“Every time that I would need to make a decision, they would check up on me a couple days later. I would receive a phone call. When I told them that I agreed to start taking medication, they called to follow up. When I decided to go ahead with the surgery, they called to check on me,” he said. “It was nice to be checked up on. I felt like they were paying attention.”

In particular, Dr. Millett was sensitive to the fact that Ricardo was eager to get off his anti-seizure medications. Through careful monitoring, Dr. Millett told Ricardo he believes he will be able to stop taking medication in a matter of weeks. This was the outcome Ricardo had been hoping for.

“My only disappointment is that I only know two languages. I thought I was going to come out of the surgery knowing five,” he joked.

Ricardo was able to return to work and to his normal life two weeks after surgery. Instead of keeping quiet about what he’d been through, Ricardo has been telling his co-workers and friends and posting about his experience on social media.

“I realize how important it is to talk about it, to bring awareness and positivity,” he said. “I posted about my experience at Hoag on social media for national epilepsy month, and a couple of people thanked me because they had gone through seizures, too

“I know it’s tough, but communicating about it helps.”