Seizure Surgery Options for Adults with Refractory Epilepsy

20-year delay in seizure surgery referral increases health risks, decreases quality of life and reduces effectiveness of future surgery

Seizure surgery is an effective treatment option for more than 1 million American adults who have epilepsy that is uncontrolled by medications, yet most patients will not be referred on average for 20 years after becoming eligible. Even one seizure a year that occurs after trying two anti-seizure medications qualifies a person for evaluation. And with more seizure surgery options than ever — including minimally invasive procedures — patients are literally risking their lives by being denied this option.

In this article, I’ll explain the risks of living with uncontrolled seizures, criteria for epilepsy surgery evaluation, how to obtain that evaluation, and the benefits patients can expect from epilepsy surgery.

Refractory Epilepsy Risks

Four in 10 adults with epilepsy have refractory epilepsy, which means their seizures are uncontrolled by medication. Although these individuals are candidates for seizure surgery evaluation, the average delay in being referred is 20 years! I’ll dive into the criteria for surgical evaluation in a moment, but let me take a minute to address the delay in referral and what that means to you if you have uncontrolled seizures.

Uncontrolled seizures limit your life, cause health risks and increase your risk of sudden death related to epilepsy. Every year, patients with refractory epilepsy experience:

• More than 74,000 ER visits
• More than 20,000 head injuries
• Approximately 11,000 hospitalizations
• Nearly 1,500 cases of SUDEP (sudden unexpected death in epilepsy) This is the leading cause of death in people with refractory epilepsy!

Those are just the physical health consequences. Having refractory epilepsy increases the risk of depression, anxiety, and sleep disturbances as well as cognitive and memory impairment. Drug-resistant epilepsy also prevents you from leading a full life. You might not be able to drive, obtain the education you desire or work in your chosen profession.

And the longer you have uncontrolled seizures, the less effective surgery potentially can be if you eventually opt for treatment.

Why then are patients not being referred for surgical evaluation for 20 years after they become eligible? This delay is due to misinformation, confusion or simply lack of information. And that’s exactly what I’m trying to prevent with this article, so let’s jump in.

Bottom line: If you have refractory epilepsy, you need to meet only two criteria to be eligible for seizure surgery evaluation:

• One or more uncontrolled seizures within a one-year period
• Failure to achieve sustained seizure freedom after adequate and well tolerated trials of two anti-seizure medications

Let’s learn more about what defines intractable vs non intractable epilepsy, why many patients are not referred for surgical evaluation, and the benefits epilepsy surgery can provide.

Intractable vs Non-Intractable Epilepsy

Intractable epilepsy is defined as having 1 or more seizures a year after trying two appropriately dosed and tolerated anti-seizure medications. Intractable epilepsy simply means that your seizures are not eliminated with medication. It’s also called drug-resistant, medically refractory or pharmacoresistant epilepsy. An many as 40% of patients with epilepsy have refractory epilepsy. Other patients may become drug-resistant over time or have intolerable side effects caused by long-term use of anti-seizure medication.

Any patient fitting those criteria should be immediately referred for seizure surgery evaluation to be given treatment options that can eliminate or significantly reduce their seizures.

So why aren’t patients being referred? There are a few factors at play that delay — or impede — referrals for surgical evaluation. I believe this stems from three misperceptions by patients, family members and even treating providers.

1. 1. Many patients compare themselves to some imaginary standard, saying to themselves, their families and their providers that their epilepsy is “not that bad” or “is tolerable.” (Some may not even report seizures in the false belief that nothing more can be done.) However, both empirical and anecdotal evidence shows that this is not the case and that is why the definition of uncontrolled epilepsy is just a single seizure in a one-year period.
   2. The second misperception is the belief that a different anti-seizure medication using a different mechanism might be the answer. With more than 30 anti-seizure medications now available, this seems to make sense. However, it’s not true. Scientific studies have repeatedly found that the likelihood of seizure freedom decreases dramatically after two anti-seizure medication trials, resulting in the International League Against Epilepsy’s definition of drug resistance as “failure of adequate trials of two tolerated, appropriately chosen and used antiepileptic drug schedules to achieve sustained seizure freedom.”
   3. Many patients and even their treating providers don’t know the range of surgical options available or believe the risk of surgery is very high. It’s quite common to hear patients explain that they didn’t seek out surgery earlier because they were afraid their only option was major “brain surgery.” By this, they are thinking about resection surgery where a portion of the brain causing the seizures is removed. While resection is one option — and a very effective option with relatively low risk compared to the benefits — it is just one of several options, including newer minimally invasive procedures. Laser interstitial thermal ablation, LITT, is the newest option where we use MRI to guide a small probe to deliver laser heat to destroy (ablate) the area of the brain causing seizures. LITT is almost as effective as resection in achieving long-term seizure freedom while reducing the risks of surgery.

Benefits of Seizure Surgery

Before I discuss the outcomes of seizure surgery, let me first be clear that being referred for a seizure surgery evaluation does not mean being referred for epilepsy surgery. A surgical evaluation helps verify a diagnosis. Surprisingly, roughly 1 out of 3 people with refractory epilepsy who undergo a seizure surgery evaluation discover that they don’t actually have epilepsy.  A surgical evaluation can further define the location and type of epilepsy, and help determine what treatment options –- surgical and non-surgical -– may be most effective.

For many patients with refractory epilepsy, seizure surgery is immensely effective. Here is a brief overview of outcomes for the five types of seizure surgery we perform:

• Resection: Depending on the type of resection performed, 45% – 70% of patients will achieve seizure freedom after surgery. Of the remaining patients, up to 10% reported a 90% decline in seizures.
• Thermal/laser ablation (LITT): Approximately 60% of patients reported seizure freedom at 2 years post-surgery.
• Responsive neurostimulation (RNS)/Neuropace: Approximately 75% of patients experienced a 75% reduction in seizure frequency at 9 years post-surgery, with one-third experiencing greater than 90% reduction in seizure frequency, according to a 2020 study published in Neurology.
• Vagus nerve stimulation (VNS): Keeping in mind that this procedure isn’t able to provide seizure freedom, the results are still very good. Approximately 50% of patients undergoing VNS experience a reduction of seizures within four months of surgery, with up to 60% of patients having positive results 2-4 years after surgery
• Deep brain stimulation (DBS): A long-term study (SANTE) found that patients with drug-resistant epilepsy who underwent DBS of the anterior nucleus of the thalamus (ANT) experienced sustained seizure reduction with minimal side effects, with increasing reduction of seizures over time. Seven years post-surgery, patients experienced a reduction in seizure frequency by up to 75%. (Of note, at our Denver DBS Center, we offer DBS surgery that is performed with the patient asleep.)

How to Obtain a Seizure Surgery Evaluation

Neurosurgery One partners with AdventHealth Littleton hospital to provide comprehensive seizure surgery evaluations. Together, we are working to make these evaluations as accessible as possible to patients.

If you have refractory epilepsy and are interested in a seizure surgery evaluation, you can request a referral to Neurosurgery One from your physician or you can schedule an appointment directly and we will work with you to obtain a referral if needed by your insurance plan. We are committed to partnering with you and your existing treatment team, and always appreciate the opportunity to work with your existing physician team in creating treatment plans. Request an appointment online or call our clinic at 720-638-7500.

Or if you’d like to learn more about the evaluation process, you can speak with AdventHealth Littleton’s epilepsy nurse navigator by using this form.