In a longitudinal study by Wilson and colleagues [14], 90 in-depth, semi-structured clinical interviews were conducted with the patient and family, with the aim of exploring the longitudinal course of postoperative adjustment. In particular, they mapped the incidence of symptoms of “the burden of normality” over a period of 2 years, examining symptom occurrence relative to seizure outcome. These symptoms comprise changes commonly reported by patients and families after surgery as they adapt to living without epilepsy [15]. Psychologically, patients often describe feeling and thinking differently about themselves (e.g., having greater self-confidence), including a sense of being “cured” or “transformed” now they no longer have seizures. This may be accompanied by an increase in expectations that patients place on themselves to be “normal” or well, and a desire to catch-up on missed opportunities or time lost due to the effects of chronic epilepsy. It can also lead to significant changes in family roles, particularly as the patient moves towards greater personal independence and new vocational and social activities. Alternatively, some patients may avoid taking on new roles and experience a sense of loss of their epilepsy and some of the benefits it provided.

In total, Wilson and colleagues [14] showed that 66 % of patients reported symptoms of the burden of normality at some time within the first 2 years of surgery. At the 24-month review, patients who had been seizure-free or experienced auras only were significantly more likely to report symptoms compared to patients who had experienced seizures, supporting the notion that the burden of normality arises from a process of adjustment as the patient learns to become well. It has also been shown to be greater in patients with seizure onset before or during adolescence, with these patients reporting greater changes in their self-identity, which can ultimately have positive effects for health-related quality of life [16].

In Sweden, Taft and colleagues recently reported the results of a 2-year outcome study of a national sample of 96 patients assessed before and after epilepsy surgery using health-related quality of life questionnaires, and satisfaction with surgery rated on a 7-point Likert scale [17]. Eighty of these patients (83 %) also answered open-ended questions at baseline, 77 (96 %) at 2 years, and 54 (67.5 %) at a mean long-term follow-up of 13 years after surgery (range 10–16 years) [18]. Preoperative questions tapped patients’ hopes and worries concerning epilepsy surgery, and questions at the follow-ups focused on whether surgery had led to benefit and/or harm. Data were analyzed by qualitative content analysis. Preoperatively, patients expressed both expectations (seizure freedom, less medication, a richer social life, better self-confidence) and fears of surgery (continued seizures, complications). Interestingly, the results from the long-term follow-up were mostly consistent with the 2-year follow-up, providing limited support for a long-term reprioritization effect in quality-of-life domains [19]. In particular, patients reported increased independence, a new life, and better self-confidence. Eighty-seven percent reported positive experiences at the 2-year follow-up and 94 % at the long-term follow-up. Some patients, however, also or only had negative experiences of surgery: they felt that life had changed for the worse through psychological problems and or physical complications (25 % after two years, and 19 % at the long-term follow-up). Some seizure-free patients reported difficulties “finding oneself” consistent with the burden of normality [15].

Several studies have explored the relationship between objective memory change after TLR and patient report of memory change. In one study of 65 patients undergoing TLR, the prevalence of significant subjective memory decline 1 year after surgery ranged from 3 to 7 %, whereas the prevalence of significant objective memory decline ranged from 26 to 55 % [20]. In another study of 290 patients followed 1 year after TLR, no significant relationships were found between subjective ratings of postoperative memory function and objective indices of change [21].

A meta-analysis of subjective memory complaints derived from 465 TLR patients and 171 informants suggests that following TLR, most patients do not report changes in their memory function. As a result, the authors recommended that a comprehensive discussion of surgical risks and benefits should incorporate both patient impressions and objective memory outcomes [22].

Christianson and colleagues investigated changes in sexuality and life satisfaction through a cross-sectional survey and obtained answers from 53/91 operated, 15/15 nonoperated patients with drug-resistant epilepsy, and 50/200 healthy controls. Specific questions regarding sexuality revealed a lower sex drive among epilepsy patients compared to controls. In most cases, there were no differences between the operated and the nonoperated patients, although the seizure-free group rated a higher level of life satisfaction and sexuality than the non-seizure-free group [23].

Another study reported 7 patients out of a series of 60, who spontaneously reported hypersexuality after unilateral TLR. All of the patients had significant difficulties with postoperative psychosocial adjustment that preceded the onset of hypersexuality, leading the researchers to conclude that hypersexuality following TLR most likely represents a complex interaction of biological and psychosocial factors [24]. In a study exploring the relationship between the amygdala and sexual drive, 21/45 patients reported a sexual increase after TLR, 14 did not describe any sexual change, and 10 reported a sexual decrease [25].

In a recent survey of 50 married males before and after TLR and 50 healthy controls, self-perceived sexual desire and satisfaction were low in patients compared to controls. Although the majority of the sexual domains improved after TLR, even after a median duration of 5 years, the sexual status of the patients did not match that of controls. Patients who were seizure-free and either AED-free or on monotherapy at the last follow-up, reported a better sexual outcome [26].

There is limited understanding of a patient’s experience of the recurrence of seizures after surgery. One in-depth interview study of 15 patients, on average 6 years after surgery, identified key themes using content analysis of patient spontaneous reports of the experience of seizure recurrence. The results showed a prominence of psychological issues over medical concerns. The four most frequently expressed themes were perceived success of surgery, medication, acceptance of seizure recurrence, and personal independence. Despite seizure recurrence, patient sentiments were not universally negative. There was heterogeneity of views, with some reporting ambivalence and others a sense of satisfaction with outcome. Patients with substantial seizure improvement (9/9) were significantly more likely to report positive subthemes of surgical success than patients with no substantial seizure improvement (1/6) [27].

A recent review of the broader literature on suboptimal results after medical interventions (including epilepsy surgery) identified 22 qualitative studies of patients experiencing a range of suboptimal outcomes. In order of frequency, the most common patient experiences included altered social dynamics and stigma, unmet expectations, negative emotions, use of coping strategies, hope and optimism, perceived failure of the treating team, psychiatric symptoms, and control issues. The authors concluded that knowledge of common patient experiences can assist in the delivery of patient follow-up and rehabilitation services tailored to differing outcomes after epilepsy surgery [28].

Several of the qualitative studies described above include assessment of family experiences. In one in-depth interview study focusing on six families before and 6–8 months after epilepsy surgery, the concept of “sudden health” was described. The findings indicated that families were organized in two primary ways (nesting and crisis) to deal with the epilepsy and the aftermath of surgery. The patient’s “sudden health” postsurgery had differing effects on these two types of families that depended on their organizational style, emotional communication, and developmental dynamics [29].

Since most patient satisfaction surveys in health care settings show high rates of satisfaction, the interpretation of satisfaction as the outcome of an active evaluation has been increasingly called into question. In a study using unstructured in-depth interviews with users of mental health services, many expressions of “satisfaction” were shown to hide a variety of reported negative experiences. The authors concluded that “dissatisfaction” rates may be a more useful indicator of a minimum level of negative experience and, therefore, of potential use in benchmarking exercises [30]. Consistent with this, in a study of the predictors of satisfaction, a lack of unmet expectations was shown to be a powerful predictor of satisfaction at all time-points [31].

A systematic review of eight studies published up to June 2009 focused on patient satisfaction with all types of epilepsy surgery [32]. Satisfaction was assessed using one or more global questions from which four themes emerged: (1) satisfied or dissatisfied, (2) perceived success or failure, (3) overall positive or negative impact, and (4) willingness to repeat surgery or regretting surgery. Overall, 71 % of patients were satisfied; 64 % considered surgery a success; it had a positive effect for 78 %; and 87 % would repeat surgery. Seizure freedom was the most common predictor of epilepsy surgery satisfaction, whereas the presence of postoperative neurologic deficits predicted dissatisfaction. In a recent prospective study of a representative national sample of 96 Swedish patients before and 2 years after epilepsy surgery, 80 % were satisfied with having had surgery and 86 % considered that they had benefited, whereas 20 % thought that surgery caused some harm [17].