As somebody who underwent an elective brain surgery that resulted in a life-threatening complication, I found a recent epilepsy surgery study fascinating. Conducted by neurology professionals from Shiraz University of Medical Sciences in Iran, the study measured participants’ willingness to undergo brain surgery, considering the chance of seizure-freedom, and surgery complications. Researchers distributed surveys to 393 people with epilepsy (PWE) between September 2022 and January 2023. Of those surveyed, only 46% said they’d be willing to have surgery if their doctors told them that surgery was guaranteed to stop their seizures. These respondents were so enthused by the possibilities of seizure-freedom, and discontinuing anti-seizure medications that they could disregard potential surgery complications.
I thought the study results were striking. I was not surprised that fewer than half of respondents would opt for brain surgery. It’s a scary invasive process, under the best of circumstances. I wasn’t willing to take that step for over twenty years after a neurologist suggested it to me. I could relate to the reasons given by the 54% who said they wouldn’t be willing to have surgery. Some of them wanted to keep trying anti-seizure medications (ASM’s) in hopes of finding a successful drug combination. Initially, I was so terrified by surgery I tried over a dozen ASM’s before agreeing to it, persevering through years of failed medication cocktails.
Where my elective brain surgery resulted in a subdural hematoma that required an emergency craniotomy, I also empathize with those fearful of surgery complications – they are a real possibility. Good brain health is integral to our wellbeing and personal identities, so it’s easy to understand why somebody would steer clear of an elective procedure that involves taking a scalpel to your head. Of course, having seizures also chips away at good brain health, hence the dilemma. Since my 2014 surgery, several innovative neurosurgery technologies have been developed including laser interstitial thermal therapy, and MRI-guided minimally invasive surgery. These cutting-edge surgical techniques will hopefully decrease the odds of surgery complications as they become more widely available.
The Shiraz Medical study, which was designed by and for neurology professionals, concluded many patients with epilepsy are willing to have epilepsy surgery if their physician presented [it] to them as an established safe and effective treatment option. The important values and priorities of PWE must be considered when designing epilepsy surgery educational materials and programs for preoperative counseling for [those] with drug-resistant seizures. “Values and priorities” of patients with drug-resistant seizures are something I inherently understand. Having lived with epilepsy for decades, I know we value seizure-freedom, safety, wellbeing, and autonomy. Interpreting the study’s conclusion through my patient’s lens, I suggest neurology practitioners include the following info in their epilepsy surgery educational materials.
There are no guarantees. The study’s positive respondents were willing to have surgery if their doctors could “guarantee” seizure-freedom. A temporal lobectomy – the procedure where the neurosurgeon excises the seizure-triggering portion of the brain – only has a 70% success rate, “success” being defined as full seizure-control. An additional 20% of neurosurgery patients see improvements in their seizure control. When my neurology team shared these statistics, they sounded dismal to me. Initially, the invasive terrifying prospect of brain surgery wasn’t worth the risk of a thirty percent failure rate. During my children’s toddler years, my seizures’ severity increased. Then I was willing to take the gamble.
Warn patients that success might come with glitches. My temporal lobectomy eventually led to a subdural hematoma, which required an emergency craniotomy to treat it. During my yearlong recovery, I recall scoffing when my neurologist called my first surgery a success. At the time, I thought it disingenuous to call a procedure successful when it resulted in a grueling near-death experience and second surgery. Now that I’ve been seizure-free for over seven years, I’ve come to agree with my neurologist. Although I had serious setbacks, the temporal lobectomy stopped my intractable complex partial seizures, without impacting my long-term memory or cognitive abilities. I no longer worry about seizures disrupting my daily routines. I got my first driver’s license in 2017 at age fifty.
Brain surgery’s 70% success rate is a percentage most teachers would grade as a C-minus. When a student receives a mediocre grade, she typically has wiggle room to make it up. When brain surgery doesn’t go as planned, often the only possible option for a grade boost is a second brain surgery. At best, this is a huge undertaking, beset with multiple invasive extensive pretests. Yet, that is what the neurologist is likely to suggest to a post-surgery epilepsy patient who still has uncontrollable seizures.
Something the study couldn’t capture is the huge disappointment a brain surgery patient feels if she goes through this procedure, and still has seizures. Where there’s a 30% chance of this outcome, brain surgery is a significant wager. Patients whose uncontrollable seizures significantly diminish their life quality may decide the risk is worth taking. They should make that decision only after they are fully informed about the less than stellar success rate, and the ample risks involved, as they are taking an enormous leap of faith. Hopefully they have a successful journey that’s less glitchy than mine was.