Seizure Outcomes in TSC Epilepsy Surgery Not Related to Satisfaction

Both tuberectomy and callosotomy may be long-term effective treatment options for individuals with TSC with drug-resistant epilepsy.

Among patients with tuberous sclerosis complex (TSC), tuberectomy resulted in high satisfaction despite only a slight majority achieving long-term seizure control, while callosotomy resulted in lower satisfaction rates, even among those free from drop attacks. These are the findings of a cross-sectional study published in Seizure: European Journal of Epilepsy.

The rare, inherited condition, TSC, is characterized by excessive cell growth leading to benign tumors in various organs of the body, including the central nervous system. These tumorous growths may result in neuronal hyperexcitability, promoting epileptic seizures refractory to drug treatments.

Researchers in Sweden conducted a national, population-based, cross-sectional study using data from the Swedish National Epilepsy Surgery Register (SNESUR) to assess long-term epileptic outcomes in 22 patients between the ages of 17 months to 24 years who underwent surgical interventions for TSC. Surgical interventions included tuberectomies (n=15) and corpus callosotomies (n=5).

They retrospectively collected data between 1990 and 1995 and prospectively collected data since 1995. They collected follow-up data on seizure outcomes at 2, 5, and 10 years after surgery with a median follow-up of 6 years 8 months following tuberectomies and 3 years 6 months following callosotomies.

Based on our results, we suggest that PROM should be part of future long-term follow-up in TSC epilepsy surgery.

Patient related outcome measure questionnaires explored overall satisfaction with surgical outcomes. Twenty out of 22 patients or caregivers completed these questionnaires.

After 2 years, 8 of the 15 patients (53%) remained seizure-free following tuberectomies. In the callosotomy group, 4 of the 7 patients remained free from baseline drop attacks.

Among individuals in the tuberectomy group, overall satisfaction with the surgeries was high, even in those who did not achieve complete remission from their epileptic seizures. Most patients or caregivers (13 out of 15) recommended the operation to others diagnosed with TSC or refractory epilepsy.

In contrast, satisfaction following callosotomy was low and correlated with seizure outcome. All patients still experiencing continued drop attacks after the operation were dissatisfied. One person viewed the surgery as harmful. Another individual refused to recommend the surgery to others despite reported perceived benefit. These varied responses indicated that factors other than seizure outcomes influenced satisfaction.

Among individuals with TSC with drug-resistant epilepsy, both tuberectomy and callosotomy may be long-term effective treatment options for TSC. The researchers noted that satisfaction and the perception of the benefit of surgery are impacted by other factors, not just seizure outcomes.

They concluded, “Based on our results, we suggest that PROM [patient related outcome measures] should be part of future long-term follow-up in TSC epilepsy surgery.”

There are several study limitations that warrant mention. These include a small sample size, possible selection bias influencing satisfaction outcomes due to only half of seizure-free callosotomy patients participating in the postoperative interview and possible recall bias due to variations in length of time between surgeries and surveys. Other study limitations to note are the negative emotions and reticence of caregivers to talk about a difficult life experience, which may have influenced the manner in which they answered survey questions.


Pearsson K, Compagno-Strandberg M, Eklund EA, Rask O, Källén K. Satisfaction and seizure outcomes of epilepsy surgery in tuberous sclerosis: a Swedish population-based long-term follow-up study. Seizure. 2022;103:39-45. doi:10.1016/j.seizure.2022.10.011