Newswise — Kaitlyn O’Connor began having seizures at age 11. She underwent her first surgery before she turned 12. One year later, in 2015, she had her second surgery, a hemispherectomy.
O’Connor’s experience is not the norm; the average time between epilepsy onset and surgical referral for most children is about five years. Adults have a much longer wait time, averaging 20 years. Lack of timely seizure control may significantly impact quality of life and increase risks of injuries and death. Yet these delays between onset of epilepsy and surgical referral have been a longstanding challenge in the field for decades.
Recommendations from the ILAE Surgical Therapies Commission suggest referring every patient with drug-resistant epilepsy under the age of 70 for further evaluation as soon as they have failed two antiseizure medications. And while surgery might be an option for up to 40% of them, fewer than 1% are referred to epilepsy centers each year.
Many neurologists and surgeons believe that misconceptions and knowledge gaps make physicians hesitant to refer people for specialized epilepsy evaluation, including for possible surgery. And many clinicians don’t understand the consequences of uncontrolled epilepsy.
“In their mind, surgery is sort of a last resort, which is not the way this should be thought of,” said Rushna Ali, an assistant professor and fellowship director at Mayo Clinic.
One study found that fewer than half of physicians surveyed agreed that anyone with uncontrolled epilepsy should be referred for surgical evaluation. As many as 30% agreed that epilepsy surgery should be viewed only as a last resort. And half of the physicians were unable to define “drug-resistant epilepsy.”
Ali said epilepsy center follow-ups with referring physicians after referrals could improve referral rates. “It’s important for them to understand that these patients do have good outcomes,” she said.
Newer, less invasive techniques also may broaden the pool of surgical candidates. A 10-year study found that stereo EEG-guided radio frequency thermocoagulation decreased seizure frequency by at least 50% in half of patients treated that way.
Though a 2021 meta-analysis found that MRI-guided laser interstitial thermal therapy (LITT) and radio frequency ablation (RFA) were inferior to conventional surgical approaches, average seizure-free rates were 57% and 44%, respectively. These techniques are potential options for people with lesions that may not be accessible by resection.
People with epilepsy face their own barriers to surgery. Some challenges are emotional; a 2019 study found that of participants, 50% did not follow recommendations for a presurgical evaluation because of their fear of brain surgery. Other reasons for rejecting referral included fear of physical handicap or cognitive deficit after surgery, with no assured surgical success.
Logistical challenges, such as long wait times for specialists, long travel distances, and lack of centralized specialty care, also are credited as some of the most significant barriers to surgery. And cost is a factor in both lower- and higher-income regions.
Some argue that because of misconceptions about surgery, clinicians should refer all people with drug-resistant epilepsy to epilepsy centers, rather than refer them specifically for surgical evaluation. At these centers, people with epilepsy could receive comprehensive evaluations from a multidisciplinary team.
To address more barriers to epilepsy surgery, Dario Englot, a neurosurgeon at Vanderbilt University, said it’s important to reach not only physicians, but also the public. “There are some physicians that are just never going to refer [for surgery] unless the patient asks for it,” he said.
Communication is crucial
Ali said that if people aren’t prepared for their first visit to a center, talking about surgery can be overwhelming. She typically uses the first meeting as an opportunity to share information, reserving a follow-up appointment for discussing surgical decisions. Because many people with epilepsy have issues with memory, Ali also makes sure her patients have access to educational materials and can either write down information themselves or have access to Ali’s notes.
“The longer patients have epilepsy, the worse their outcomes are,” Ali said. “Getting to these patients early and identifying the right patients who are potentially candidates for this therapy is important.”
O’Connor’s experience with surgery was positive, in large part due to the open and honest communication and care she received from her medical team. She is currently working with a physician to write an article with advice for epilepsy professionals, highlighting effective communication.
“I feel like the gut reaction when you’re working with kids is to sugarcoat it,” said O’Connor. “I had one neurologist that was very upfront with me; she treated me like my parents… it’s really good to have been treated more as an equal.”
Ali said communication and good rapport with everyone on the care team is essential for building relationships before surgery.
“You have to build that relationship of trust so that they’re open to the information you’re giving them, and they feel comfortable enough to come to you with questions,” she said.
Taking a holistic view of risk
An avid knitter with no previous history of epilepsy or seizures, “KP” had her first seizure at the age of 41. A decade later, she underwent a right temporal lobe resection.
Before surgery, she was counseled about the possibility of postoperative decline in memory function and visual learning. After surgery, these declines became evident and highly impacted her ability to knit. KP was known for creating designs without a written pattern. Although she did eventually regain the physical ability to knit, her design capacity remains compromised.
Sallie Baxendale, professor of clinical neurology at the University College London Hospitals, wrote the case study on KP. She said taking a holistic approach is critical when assessing risk before surgery.
“What are their hobbies, how do they spend their time at work, at home, socially?” she said. “Try and work out in each one of those domains how it’s going to impact somebody.”
For KP, the loss of knitting ability was difficult, especially in conjunction with continued seizures after her surgery.
Baxendale promotes proper communication before surgery to help people consider their risks and benefits. For example, about one-third of people who undergo a temporal lobe resection continue to have seizures after surgery. About one-third also have significant postoperative declines in memory function.
Properly counseling potential candidates about these risks may help them decide if surgery is right for them, Baxendale said, and it can also help with postoperative care.
“We can use the function that they’ve got before the operation to get everything in place ready for when they suffer that memory loss, so that it’s just seamless,” she said.
In addition to known risks and challenges presented by specific resections, other factors also can play into preoperative counseling, such as anxiety and physical frailty.
Medical advancements are testing other ways to predict surgery outcome, such as genetic testing, which may be able to identify cases where surgery is unlikely to succeed. Some existing models use large datasets to predict post-operative outcomes. Baxendale is working on her own algorithm that will increase accessibility to identify potential problems during surgical evaluation.
Artificial intelligence also may help physicians. A recent randomized controlled trial found that when using machine-based learning to alert providers to potential surgical candidates, neurologists were three times as likely to refer people for presurgical evaluations than they were without the automated alerts.
But while much attention goes toward care and treatment before surgery, people with epilepsy don’t always receive the same level of intense attention afterward.
“A lot of patients report that they get a lot of input prior to surgery,” Baxendale said. “A lot of them will report that they sort of feel a bit lost afterwards, because we leave them to get better.”
Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 125 national chapters.
Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.