Why Epilepsy Surgery Is Underused (And What You Should Know)

As a parent of a child with epilepsy, you know how heartbreaking seizures can be. You’ve likely tried different medications, hoping to find the one that finally brings relief. But what if, even with medication, the seizures keep coming?

This was the case with my son.

When my son was four months old and initially diagnosed with epilepsy, we were prescribed levetiracetam and sent home. Hopeful that this drug would be an easy fix, we were shocked and saddened that it did little to help him. We were not made aware of the possibility and prevalence of drug-resistant epilepsy (DRE),

What is Drug-Resistant Epilepsy?

Sadly, about a third of children with epilepsy don’t get full seizure control from medication alone. If your child has tried two different anti-seizure medications and they haven’t worked well, it is unlikely that trying more medications will stop the seizures. Studies show that only a small number of people – about 4 in 100 – become seizure-free after failing those first two medications (Kwan & Sperling, 2009).

DRE can also lead to:

• Difficulty with learning and thinking
• Struggles with emotions and well-being
• Lower quality of life overall
• Increased risk of serious health problems and even early death
• Financial strain on the family

The Surprising Power of Epilepsy Surgery

Epilepsy surgery can be a safe and effective treatment for some types of DRE (Samanta et al., 2021). It is estimated that approximately 25–50% of patients with DRE may be candidates for resection surgery, with others candidates for surgeries like neuromodulation. Yet, surgery is often not considered early enough, even though it has a strong track record of success.

On average, there is a gap of 22 years from the onset of epilepsy to surgical treatment.

However, studies have shown remarkable surgical results in both adults and children with drug-resistant epilepsy:

• In some cases, more than half of epilepsy surgery patients become seizure-free!
• Children who had surgery showed significant improvements in behavior and quality of life and most even got back on track with learning.
• Epilepsy surgery often becomes more cost-effective than continuing medication over time.

Why Don’t More Families Explore Surgery?

There are several reasons why surgery isn’t a go-to option for more families:

• Fear and Misunderstandings

  It’s natural to feel scared about brain surgery. Many people worry about risks or how well it will work.

• Hope for a New Medication

  It’s easier to keep trying new medications than to make a big change.

• Limited Doctor Knowledge

  Not all doctors are specialists in epilepsy surgery. Some might not even suggest it as an option.

• Complex Steps

  Getting ready for surgery involves advanced imaging. These tests may be costly and not available at the local hospital.

• System Issues

  Some centers have long wait times, and socioeconomic bias may exist when choosing surgical candidates.

The Importance of Epilepsy Centers

The best way to learn all about epilepsy surgery is to visit a specialized epilepsy center. These centers have doctors who are experts in assessing your child, determining whether surgery is a good option, and clearly explaining the risks and benefits. Seeking advice from an epilepsy specialist can open doors to better seizure control and a brighter future for your child.

Research and Awareness

Despite this promising news, far too few children with DRE receive this potentially life-changing treatment. Doctors, hospitals, and families all play a role in understanding why access to this option is so limited. Researchers must continue to understand why epilepsy surgery is underutilized. The decision to pursue surgery is difficult for families, but it’s vital to understand what surgery can do for your child. It does not need to be a last resort!

Reference

Samanta, D., Ostendorf, A. P., Willis, E., Singh, R., Gedela, S., Arya, R., & Perry, M. S. (2021). Underutilization of epilepsy surgery: Part I: A scoping review of barriers. Epilepsy & Behavior, 117, 107837. https://doi.org/10.1016/j.yebeh.2021.107837

Helpful Resources

1. Seek Specialized Support: Contact a comprehensive epilepsy center – their experts know the latest treatment options and can assess if surgery is right for your child.
2. Learn More: Research reliable resources on epilepsy surgery. Knowledge is power!
3. Financial Aid for 2^nd Opinion Travel: If you want to get first, second, or even third opinion about whether your child can have epilepsy surgery, you may qualify for up to $1,000 in financial aid from the Pediatric Epilepsy Surgery Alliance to get to a comprehensive epilepsy center more than 50 miles from your home.