As somebody who had a kiwi-sized chunk of her brain surgically removed to treat intractable seizures, I was doing a Snoopy dance as I read the headline in November: Incision-Free Brain Surgery Uses The Power of PING. The University of Virginia (UVA) School of Medicine published a study in Science Daily and Technology Networks, outlining research they’d conducted using rats to develop a noninvasive method to remove faulty brain circuits.
I delved into the story: “PING harnesses the power of magnetic-resonance imaging (MRI) to let scientists peer inside the skull …. PING allows the delivery of a highly targeted neurotoxin, cleanly wiping out problematic neurons… without causing collateral damage.” In laypeople’s terms: Researchers used intravenous microbubbles and guided MRI to inject poison and decimate the rat brains’ seizure-triggering section, while sparing the rest of it. Nobody spelled out the acronym. WTF is PING? After an hour of online web-surfing I found my answer, buried in the footnotes of a Journal of Neurosurgery article: precise, intracerebral, noninvasive, guided surgery. Ding, ding, ding for PING, PING, PING!
In May I read a story about Rutgers University student, Skye Cotler who successfully underwent a form of laser brain surgery to treat her epilepsy. Her surgeon used a process known as MRI laser interstitial thermal therapy, or LITT. During LITT, surgeons use an MRI to find the seizure-triggering portion of the brain, then kill the cells by burning them with a laser that’s between 113- and 140-degrees Fahrenheit. When asked about her operation, Ms. Cotler said, “The next morning, I was like, standing, walking around but it was crazy because if I had gotten the regular craniotomy, I would’ve been out for, I don’t know, a week or two weeks, however long.” Try months, Ms. Cotler. I had a temporal lobectomy done, which typically has a two-month recovery period. My surgery was complicated by a stretched vein and subsequent subdural hematoma that required a full-blown craniotomy and took well over a year to recover from.
Initially I was jealous as I read Ms. Cotler’s story. Had LITT or PING been available when I decided to have surgery in 2014, my recovery would have been shorter, and I probably wouldn’t have these startling scars on my head (https://lauraberetsky.com/my-story/#Post_surgery_hair_regrowth). Then I was ticked off – these high-tech surgical methods could have been around sooner. But they weren’t because epilepsy is not a priority in the neurological disorder research world. The 2022 National Institute of Health (NIH) research allocations were $212 million for epilepsy, $249 million for Parkinson’s disease, and $3.3 billion for Alzheimer’s Disease and Related Dementias. Considering that 3.4 million Americans have epilepsy, about one million have Parkinson’s, and 5.8 million have Alzheimer’s/Dementia, the funding amounts are disproportionate. For every American with epilepsy, the NIH invests $62 into research. That number is $249 for Americans with Parkinson’s and $569 for those with Alzheimer’s/Dementia. Epilepsy is the neglected stepsister disease, making new medications and technology like LITT and PING less accessible to patients.
One possible reason for this disparity is that except when the patient is having a seizure, epilepsy is a largely invisible condition compared to those with Alzheimer’s or Parkinson’s. Another is that advances in drug treatments give the impression that epilepsy is a manageable condition. While two-thirds of people with epilepsy control their seizures with medication, over one million of us cannot. Many people with uncontrollable seizures must live with the risks they present, which are sometimes fatal. This option is also expensive: The annual healthcare costs for those with unstable epilepsy is $9,400 higher than those whose seizures are under control. Even more troubling is the lower life quality that comes from living in fear of having a seizure, being stigmatized by others if they witness it, and suffering through seizures’ physiological effects. Prior to surgery, my seizures interfered with job opportunities and friendships, and led to harsh judgements about personal life choices from those who care about me most. Having lived with unstable epilepsy for decades, I know it’s impossible to put a price tag on these burdens.
Brain surgery can be an option for some with epilepsy, depending on where in the brain the seizures originate. I chose to have a right temporal lobectomy in 2014 because my seizures had become more frequent and severe. I had young children and putting their safety at risk scared me more than the surgeon’s scalpel. I hemmed and hawed about that drastic scary step for more than 20 years. Had PING or LITT been around, I may have opted for surgery sooner. While I’m thrilled less invasive surgical methods are available, I wish they had been around years ago. I might have avoided the second emergency surgery.
I’m also vexed by how obscure new developments are. Approximately 30% of the 3.4 million Americans living with epilepsy have uncontrollable seizures. I suspect that many of them would also be interested – if not excited – to learn about PING and LITT. But given how hard the information was to uncover, very few of those patients will even know to ask their doctors about it. While increased patient knowledge expands patients’ healthcare options, this goal is hard to achieve when information is hidden in the footnotes of medical journals.
Going forward, the NIH should increase epilepsy research funding, so it’s proportional to other neurological illnesses. If the NIH only counted the approximately one million patients with uncontrollable seizures, that number would be comparable to Americans with Parkinson’s Disease, which currently receives 17% more research funding than epilepsy. Those additional dollars could accelerate efforts to develop new drug therapies and less invasive surgical methods, a progression that currently advances in tiny slow baby steps. A funding bolster would result in more people with epilepsy whose seizures are under control.
I can’t help but wonder if another reason for the funding disparity is that there isn’t a public figure willing to go to bat for epilepsy, the same way Michael J Fox did for Parkinson’s. Given the stigma surrounding epilepsy, famous people who have it don’t typically like to publicize that fact. When child actor Cameron Boyce died of Sudden Unexplained Death due to Epilepsy in 2019, his family established a foundation whose mission is epilepsy awareness. Sadly, the renowned figure who could have championed the cause passed away, in part due to lack of epilepsy funding.
Having lived with intractable seizures for most of my life, I know achieving seizure-control is a monumental game changer. The NIH should allocate equitable research funding dollars, so people with uncontrollable seizures have a better shot at the game.