Background: Due to the rarity of cerebral venous thrombosis (CVT), performing high-quality scientific research in this field is challenging. Providing answers to unresolved research questions will improve prevention, diagnosis, and treatment, and ultimately translate to a better outcome of patients with CVT. We present an international research agenda, in which the most important research questions in the field of CVT are prioritized. Aims: This research agenda has three distinct goals: (1) to provide inspiration and focus to research on CVT for the coming years, (2) to reinforce international collaboration, and (3) to facilitate the acquisition of research funding. Summary of review: This international research agenda is the result of a research summit organized by the International Cerebral Venous Thrombosis Consortium in Amsterdam, the Netherlands, in June 2023. The summit brought together 45 participants from 15 countries including clinical researchers from various disciplines, patients who previously suffered from CVT, and delegates from industry and non-profit funding organizations. The research agenda is categorized into six pre-specified themes: (1) epidemiology and clinical features, (2) life after CVT, (3) neuroimaging and diagnosis, (4) pathophysiology, (5) medical treatment, and (6) endovascular treatment. For each theme, we present two to four research questions, followed by a brief substantiation per question. The research questions were prioritized by the participants of the summit through consensus discussion. Conclusions: This international research agenda provides an overview of the most burning research questions on CVT. Answering these questions will advance our understanding and management of CVT, which will ultimately lead to improved outcomes for CVT patients worldwide.

There is a noticeable gap between results of cognitive neuroscientific research into basic mathematical abilities and philosophical and empirical investigations of mathematics as a distinct intellectual activity. The paper explores the relevance of a Wittgensteinian framework for dealing with this discrepancy.

The reach to expose the peritrigonal/atrial territories poses special challenges. The highly functional overlying cortices and white matter tracts, such as the optic radiations lateral to the ventricle, postcentral gyrus laterally and more superficially, and the thalamus anteroinferiorly, constrain the surgical corridors to the atrium. Standard interhemispheric or transcortical approaches involve significant retraction and resection of the normal parenchyma. In this offering, the authors describe the contralateral posterior interhemispheric transfalcine transprecuneus approach (PITTA), which provides flexible working angles while protecting the functional brain tissues. In summary, the PITTA is founded on the concept of using a contralateral operative trajectory to augment a more tangential working angle to the more difficult-to-reach lateral target through a midline route. The PITTA emphasizes the importance of operative working angles (versus necessary operative space) through less disruptive exposures as a more viable parameter for achieving desirable results.

ImportanceTo date, only uncontrolled studies have evaluated the efficacy and safety of endovascular treatment (EVT) in patients with cerebral venous thrombosis (CVT), leading to the lack of recommendations on EVT for CVT.ObjectiveTo evaluate the efficacy and safety of EVT in patients with a severe form of CVT.Design, Setting, and ParticipantsTO-ACT (Thrombolysis or Anticoagulation for Cerebral Venous Thrombosis) was a multicenter, open-label, blinded end point, randomized clinical trial conducted in 8 hospitals in 3 countries (the Netherlands, China, and Portugal). Patients were recruited from September 2011 to October 2016, and follow-up began in March 2012 and was completed in December 2017. Adult patients with radiologically confirmed CVT who had at least 1 risk factor for a poor outcome (mental status disorder, coma state, intracerebral hemorrhage, or thrombosis of the deep venous system) were included. Data were analyzed according to the intention-to-treat principle from March 2018 to February 2019. The trial was halted after the first interim analysis for reasons of futility.InterventionsPatients were randomized to receive either EVT with standard medical care (intervention group) or guideline-based standard medical care only (control group). The EVT consisted of mechanical thrombectomy, local intrasinus application of alteplase or urokinase, or a combination of both strategies. Patients in the intervention group underwent EVT as soon as possible but no later than 24 hours after randomization.Main Outcomes and MeasuresPrimary end point was the proportion of patients with a good outcome at 12 months (recovered without a disability; modified Rankin Scale [mRS] score of 0-1). Secondary end points were the proportion of patients with an mRS score of 0 to 1 at 6 months and an mRS score of 0 to 2 at 6 and 12 months, outcome on the mRS across the ordinal continuum at 12 months, recanalization rate, and surgical interventions in relation to CVT. Safety end points included symptomatic intracranial hemorrhage.ResultsOf the 67 patients enrolled and randomized, 33 (49%) were randomized to the intervention group and 34 (51%) were randomized to the control group. Patients in the intervention group vs those in the control group were slightly older (median [interquartile range (IQR)] age, 43 [33-50] years vs 38 [23-48] years) and comprised fewer women (23 women [70%] vs 27 women [79%]). The median (IQR) baseline National Institutes of Health Stroke Scale score was 12 (7-20) in the EVT group and 12 (5-20) in the standard care group. At the 12-month follow-up, 22 intervention patients (67%) had an mRS score of 0 to 1 compared with 23 control patients (68%) (relative risk ratio, 0.99; 95% CI, 0.71-1.38). Mortality was not statistically significantly higher in the EVT group (12% [n = 4] vs 3% [n = 1]; P = .20). The frequency of symptomatic intracerebral hemorrhage was not statistically significantly lower in the intervention group (3% [n = 1] vs 9% [n = 3]; P = .61).Conclusions and RelevanceThe TO-ACT trial showed that EVT with standard medical care did not appear to improve functional outcome of patients with CVT. Given the small sample size, the possibility exists that future studies will demonstrate better recovery rates after EVT for this patient population.Trial RegistrationClinicalTrials.gov Identifier: NCT01204333.

Purpose: According to the international guidelines, acute subdural hematomas (aSDH) with a thickness of >10 mm, or causing a midline shift of >5 mm, should be surgically evacuated. However, high mortality rates in older patients resulted in ongoing controversy whether elderly patients benefit from surgery. We identified predictors of outcome in a single-centre cohort of elderly patients undergoing surgical evacuation of aSDH or subacute subdural hematoma (saSDH). Materials and methods: This retrospective study included all patients aged >= 65 years undergoing surgical evacuation of aSDH/saSDH from 2000 to 2015. One-year outcome was dichotomized into favourable (Glasgow Outcome Scale (GOS) 4-5) and unfavourable (GOS 1-3). Predictors of outcome were identified by analysing patient characteristics. Results: Eighty-four patients aged >= 65 years underwent craniotomy for aSDH/saSDH during the 16 year time period. Twenty-five percent regained functional independence, 11% survived severely disabled, and 64% died. Most patients died of respiratory failure following withdrawal of artificial respiration or following restriction of treatment. Age of the SDH or Glasgow Coma Scores <= 8/intubation did not predict unfavourable outcome. All patients with bilaterally absent pupillary light reflexes died, also those who still exhibited one normal-sized pupil. Conclusion: The low number of operated patients per year probably suggests that this cohort represents a selection of patients who were judged to have good chances of favouring from surgery. Functional independence at one-year follow-up was reached in 25% of patients, 64% died. Patients with bilaterally absent pupillary light reflexes did not benefit from surgery. The tendency to restrict treatment because of presumed poor prognosis may have acted as a self-fulfilling prophecy.

Background and purposeCerebrovascular responses to head‐of‐bed positioning in patients with acute ischaemic stroke are heterogeneous, questioning the applicability of general recommendations on head positioning. Cerebral autoregulation is impaired to various extents after acute stroke, although it is unknown whether this affects cerebral perfusion during posture change. We aimed to elucidate whether the cerebrovascular response to head position manipulation depends on autoregulatory performance in patients with ischaemic stroke.MethodsThe responses of bilateral transcranial Doppler ultrasound‐determined cerebral blood flow velocity (CBFV) and local cerebral blood volume (CBV), assessed by near‐infrared spectroscopy of total hemoglobin tissue concentration ([total Hb]), to head‐of‐bed lowering from 30° to 0° were determined in 39 patients with acute ischaemic stroke and 17 reference subjects from two centers. Cerebrovascular autoregulatory performance was expressed as the phase difference of the arterial pressure‐to‐CBFV transfer function.ResultsFollowing head‐of‐bed lowering, CBV increased in the reference subjects only ([total Hb]: + 2.1 ± 2.0 vs. + 0.4 ± 2.6 μM; P < 0.05), whereas CBFV did not change in either group. CBV increased upon head‐of‐bed lowering in the hemispheres of patients with autoregulatory performance <50th percentile compared with a decrease in the hemispheres of patients with better autoregulatory performance ([total Hb]: +1.0 ± 1.3 vs. −0.5 ± 1.0 μM; P < 0.05). The CBV response was inversely related to autoregulatory performance (r = −0.68; P < 0.001) in the patients, whereas no such relation was observed for CBFV.ConclusionThis study is the first to provide evidence that cerebral autoregulatory performance in patients with acute ischaemic stroke affects the cerebrovascular response to changes in the position of the head.

Rationale After a cerebral vein thrombosis, there is an increased risk of further venous thromboembolic events. The optimal duration of anticoagulation after cerebral vein thrombosis is unknown. Aim To compare efficacy and safety of a policy of short- (3-6 months) versus long-term (12 months) anticoagulation (any type venous thromboembolic events) after cerebral vein thrombosis for the prevention of venous thromboembolic events. Sample size estimates A sample of 1428 patients (749 per arm) allows detecting a reduction from 10 to 5% in the risk of venous thromboembolic event recurrence with 80% power at 5% significance, with 3% dropout rate. Methods and design An international multicenter, prospective cluster-randomized trial with equal allocation between both interventions (ISRCTN25644448). Each cluster is a participating center, which accepted to be randomly allocated to one of the anticoagulation policies. Eligible patients are adults with radiologically confirmed cerebral vein thrombosis within 30 days, and stable to initiate post-acute anticoagulation. Patients judged by the investigator to be an absolute indication for permanent anticoagulation are excluded. Follow-up is at 6, 12 and 24 months. Study outcomes Primary efficacy outcome is any symptomatic and confirmed fatal/nonfatal venous thromboembolic event (recurrent-cerebral vein thrombosis or non-cerebral venous thromboembolic event). Primary safety outcomes include bleeding events during treatment periods and death from any cause. Discussion This study responds to a knowledge gap in the post-acute management of cerebral vein thrombosis patients by comparing short- versus long-term anticoagulation for the prevention of venous thromboembolic event recurrence.

The current proposal for cerebral venous thrombosis guideline followed the Grading of Recommendations, Assessment, Development, and Evaluation system, formulating relevant diagnostic and treatment questions, performing systematic reviews of all available evidence and writing recommendations and deciding on their strength on an explicit and transparent manner, based on the quality of available scientific evidence. The guideline addresses both diagnostic and therapeutic topics. We suggest using magnetic resonance or computed tomography angiography for confirming the diagnosis of cerebral venous thrombosis and not screening patients with cerebral venous thrombosis routinely for thrombophilia or cancer. We recommend parenteral anticoagulation in acute cerebral venous thrombosis and decompressive surgery to prevent death due to brain herniation. We suggest to use preferentially low-molecular weight heparin in the acute phase and not using direct oral anticoagulants. We suggest not using steroids and acetazolamide to reduce death or dependency. We suggest using antiepileptics in patients with an early seizure and supratentorial lesions to prevent further early seizures. We could not make recommendations due to very poor quality of evidence concerning duration of anticoagulation after the acute phase, thrombolysis and/or thrombectomy, therapeutic lumbar puncture, and prevention of remote seizures with antiepileptic drugs. We suggest that in women who suffered a previous cerebral venous thrombosis, contraceptives containing oestrogens should be avoided. We suggest that subsequent pregnancies are safe, but use of prophylactic low-molecular weight heparin should be considered throughout pregnancy and puerperium. Multicentre observational and experimental studies are needed to increase the level of evidence supporting recommendations on the diagnosis and management of cerebral venous thrombosis.

Background In contemporary studies, cerebral venous thrombosis is three times more common in adult women than in men. Aim To study the change in sex ratio over time in cerebral venous thrombosis. Summary of review We systematically reviewed the literature. Any type of study with at least 40 patients with cerebral venous thrombosis that reported sex ratio was eligible. We ranked studies according to the year halfway the period of patient recruitment. Pediatric studies were analyzed separately. Out of 6068 publications identified by our search, 112 studies (23,638 patients), published between 1966 and 2014, were included. The proportion of women among patients with cerebral venous thrombosis significantly increased over time from a median of 54.8% in studies prior to 1981 to 69.8% after 2001 ( p = 0.002). There was a significant correlation between time of the study and proportion of women (Pearson’s correlation coefficient 0.25, p = 0.01). Oral contraceptive use among women with cerebral venous thrombosis also increased over time (Pearson’s correlation coefficient 0.29, p = 0.01). In contrast, the percentage of pregnancy-related cases remained stable (Pearson’s correlation coefficient 0.04, p = 0.77). Among 1702 patients from pediatric studies, 39% were female and there was no correlation between sex ratio and time of the study (Pearson’s correlation coefficient −0.42, p = 0.14). Conclusions In adult patients with cerebral venous thrombosis, there is a shift in sex ratio over time with an increase in the proportion of women, whereas this is not observed in pediatric populations. A possible explanation for this phenomenon is an increase over time in the use of oral contraceptives by adult women.

IMPORTANCEObesity is a risk factor for deep vein thrombosis of the leg and pulmonary embolism. To date, however, whether obesity is associated with adult cerebral venous thrombosis (CVT) has not been assessed.OBJECTIVETo assess whether obesity is a risk factor for CVT.DESIGN, SETTING, AND PARTICIPANTSA case-control study was performed in consecutive adult patients with CVT admitted from July 1, 2006 (Amsterdam), and October 1, 2009 (Berne), through December 31, 2014, to the Academic Medical Center in Amsterdam, the Netherlands, or Inselspital University Hospital in Berne, Switzerland. The control group was composed of individuals from the control population of the Multiple Environmental and Genetic Assessment of Risk Factors for Venous Thrombosis study, which was a large Dutch case-control study performed from March 1, 1999, to September 31, 2004, and in which risk factors for deep vein thrombosis and pulmonary embolism were assessed. Data analysis was performed from January 2 to July 12, 2015.MAIN OUTCOMES AND MEASURESObesity was determined by body mass index (BMI). A BMI of 30 or greater was considered to indicate obesity, and a BMI of 25 to 29.99 was considered to indicate overweight. A multiple imputation procedure was used for missing data. We adjusted for sex, age, history of cancer, ethnicity, smoking status, and oral contraceptive use. Individuals with normal weight (BMI <25) were the reference category.RESULTSThe study included 186 cases and 6134 controls. Cases were younger (median age, 40 vs 48 years), more often female (133 [71.5%] vs 3220 [52.5%]), more often used oral contraceptives (97 [72.9%] vs 758 [23.5%] of women), and more frequently had a history of cancer (17 [9.1%] vs 235 [3.8%]) compared with controls. Obesity (BMI ≥30) was associated with an increased risk of CVT (adjusted odds ratio [OR], 2.63; 95% CI, 1.53-4.54). Stratification by sex revealed a strong association between CVT and obesity in women (adjusted OR, 3.50; 95% CI, 2.00-6.14) but not in men (adjusted OR, 1.16; 95% CI, 0.25-5.30). Further stratification revealed that, in women who used oral contraceptives, overweight and obesity were associated with an increased risk of CVT in a dose-dependent manner (BMI 25.0-29.9: adjusted OR, 11.87; 95% CI, 5.94-23.74; BMI ≥30: adjusted OR, 29.26; 95% CI, 13.47-63.60). No association was found in women who did not use oral contraceptives.CONCLUSIONS AND RELEVANCEObesity is a strong risk factor for CVT in women who use oral contraceptives.

Background and Purpose— Local infections of the head or neck are a cause of cerebral venous thrombosis. Treatment of infectious cerebral venous thrombosis with heparin is controversial. We examined whether this treatment was associated with intracranial hemorrhagic complications and poor clinical outcome. Methods— We retrieved data from a prospective cohort study of 624 cerebral venous thrombosis patients. We compared patients with and without an infection of the head or neck and anticoagulated versus not anticoagulated. We examined death or dependency and new intracerebral hemorrhages. Results— Six hundred four of 624 patients were eligible for the study. Fifty-seven patients had an infection of the head or neck (9.4%). Comparing data between infection and noninfection patients, the frequency of therapeutic doses of heparin was similar in both groups (82.5% versus 83.7%). New intracerebral hemorrhages were more common in patients with an infection (12.3% versus 5.3%; P=0.04), but death or dependency did not differ between patients with and without an infection (15.8% versus 13.7%). In patients with an infection of the head or neck, there was no significant difference in the frequency of new intracerebral hemorrhages and poor outcome between patients who did or did not receive therapeutic doses of heparin. Conclusions— New intracerebral hemorrhages were more frequent in patients with an infection. The use of therapeutic doses of heparin did not seem to influence the risk of new intracranial hemorrhages or poor clinical outcome, but the number of patients who did not receive anticoagulation was too small to draw firm conclusions about safety of heparin in adults with cerebral venous thrombosis and an infection of the head or neck.

BACKGROUND:Venous thromboembolism (VTE) is a frequent complication in patients with acute lymphoblastic leukemia (ALL). A significant proportion of patients develop cerebral venous thrombosis (CVT). METHODS:To investigate risk factors for and the clinical course of CVT in ALL patients, we describe all cases of CVT which occurred in a well-defined cohort of 240 adults, treated for newly diagnosed ALL in the HOVON (Dutch-Belgian Hemato-Oncology Cooperative Group)-37 study. We conducted a nested case-control study to explore the relevance of early symptoms and risk factors for CVT in ALL patients. RESULTS:Nine of 240 patients developed CVT (4%). CVT occurred during or shortly after L-asparaginase therapy (in 8 cases) and shortly after intrathecal methotrexate injections (in all cases) during cycle I of remission induction treatment. CVT was associated with prior headache and seizures. In 5 of 9 patients with CVT, headache before the diagnosis of CVT occurred within 3 days after lumbar puncture and initially had a postural character. CONCLUSIONS:CVT is relatively common in adult ALL patients. Our data suggest that CVT in adult ALL patients results from the additive effects of multiple risk factors, with a particular role for asparaginase and the effects of lumbar punctures for intrathecal therapy.

Background and Purpose Anemia is often considered to be a risk factor for cerebral venous thrombosis (CVT), but this assumption is mostly based on case reports. We investigated the association between anemia and CVT in a controlled study.Methods Unmatched case-control study: cases were adult patients with CVT included in a single-center, prospective database between July 2006 and December 2014. Controls were subjects from the control population of the Multiple Environmental and Genetic Assessment of Risk Factors for Venous Thrombosis (MEGA) study. Anemia was defined according to World Health Organization criteria: nonpregnant women hemoglobin <7.5 mmol/L, pregnant women <6.9 mmol/L, and men <8.1 mmol/L. We used logistic regression analysis, adjusting for age, sex, malignancy, oral contraceptive use, and pregnancy/puerperium.Results We included 152 cases and 2916 controls. Patients with CVT were younger (mean age, 40 versus 48 years) and more often women (74% versus 53%) than controls. Anemia was more frequent in cases (27.0%) than in controls (6.5%; P<0.001). Anemia was associated with CVT, both in univariate analysis (odds ratio, 5.3; 95% confidence interval [CI], 3.6-7.9) and after adjustment for potential confounders (adjusted odds ratio, 4.4; 95% CI, 2.8-6.9). Hemoglobin as a continuous variable was inversely associated with CVT (adjusted odds ratio per 1 mmol/L change 0.53; 95% CI, 0.42-0.66). Stratification by sex showed a stronger association between anemia and CVT in men (adjusted odds ratio, 9.9; 95% CI, 4.1-23.8) than in women (3.6; 95% CI, 2.1-6.0).Conclusion Our data suggest that anemia is a risk factor for CVT.

In patients with a space-occupying middle cerebral artery (MCA) infarct surgical decompression reduces the risk of death, but increases the chance of survival with severe disability. We assessed quality of life (QoL), symptoms of depression, and caregiver burden at long-term follow-up.

Increased intracranial pressure is common in cerebral venous thrombosis (CVT), but hydrocephalus is rarely reported in these patients. We examined the frequency, pathophysiology and associated clinical manifestations of hydrocephalus in patients with CVT admitted to our hospital between 2000 and 2010 (prospectively since July 2006). Hydrocephalus was defined as a bicaudate index larger than the 95th percentile for age, and/or a radial width of the temporal horn of ≥5 mm. We excluded patients in whom hydrocephalus was caused by a disease other than CVT or if it was iatrogenic. 20 out of 99 patients with CVT had hydrocephalus. 6 patients with hydrocephalus were excluded from the analysis. Patients with hydrocephalus more often had focal neurological deficits (86 vs. 49 %, p = 0.02) and were more frequently comatose (43 vs. 16 %, p = 0.06), as compared to patients without hydrocephalus. Deep cerebral venous thrombosis (64 vs. 9 %, p < 0.001) and edema of the basal ganglia and thalami (64 vs. 4 %, p < 0.001) were more common in patients with hydrocephalus. Intraventricular hemorrhage was present in 1 patient with hydrocephalus, compared to none among patients without hydrocephalus (7 vs. 0 %, p = 0.15). Outcome at follow-up was worse in patients with hydrocephalus (mRS 0–1, 36 vs. 68 %, p = 0.02; mortality 29 vs. 9 %, p = 0.07). Hydrocephalus occurs more frequently in cerebral venous thrombosis than previously believed, especially in patients with deep cerebral venous thrombosis and edema of the basal ganglia. The presence of hydrocephalus is associated with a worse clinical outcome, but a direct causal relation is unlikely. Routine shunting procedures are not advisable.

Background and Purpose— Cerebral venous thrombosis is generally treated with anticoagulation. However, some patients do not respond to medical therapy and these might benefit from mechanical thrombectomy. The aim of this study was to gain a better understanding of the efficacy and safety of mechanical thrombectomy in patients with cerebral venous thrombosis, by performing a systematic review of the literature. Methods— We identified studies published between January 1995 and February 2014 from PubMed and Ovid. We included all cases of cerebral venous thrombosis in whom mechanical thrombectomy was performed with or without intrasinus thrombolysis. Good outcome was defined as normal or mild neurological deficits at discharge (modified Rankin Scale, 0–2). Secondary outcome variables included periprocedural complications and recanalization rates. Results— Our study included 42 studies (185 patients). Sixty percent of patient had a pretreatment intracerebral hemorrhage and 47% were stuporous or comatose. AngioJet was the most commonly used device (40%). Intrasinus thrombolysis was used in 131 patients (71%). Overall, 156 (84%) patients had a good outcome and 22 (12%) died. Nine (5%) patients had no recanalization, 38 (21%) had partial, and 137 (74%) had near to complete recanalization. The major periprocedural complication was new or increased intracerebral hemorrhage (10%). The use of AngioJet was associated with lower rate of complete recanalization (odds ratio, 0.2; 95% confidence interval, 0.09–0.4) and lower chance of good outcome (odds ratio, 0.5; 95% confidence interval, 0.2–1.0). Conclusions— Our systematic review suggests that mechanical thrombectomy is reasonably safe but controlled studies are required to provide a definitive answer on its efficacy and safety in patients with cerebral venous thrombosis.

Background and Purpose-Cerebral venous thrombosis is generally treated with anticoagulation. However, some patients do not respond to medical therapy and these might benefit from mechanical thrombectomy. The aim of this study was to gain a better understanding of the efficacy and safety of mechanical thrombectomy in patients with cerebral venous thrombosis, by performing a systematic review of the literature.Methods-We identified studies published between January 1995 and February 2014 from PubMed and Ovid. We included all cases of cerebral venous thrombosis in whom mechanical thrombectomy was performed with or without intrasinus thrombolysis. Good outcome was defined as normal or mild neurological deficits at discharge (modified Rankin Scale, 0-2). Secondary outcome variables included periprocedural complications and recanalization rates.Results-Our study included 42 studies (185 patients). Sixty percent of patient had a pretreatment intracerebral hemorrhage and 47% were stuporous or comatose. AngioJet was the most commonly used device (40%). Intrasinus thrombolysis was used in 131 patients (71%). Overall, 156 (84%) patients had a good outcome and 22 (12%) died. Nine (5%) patients had no recanalization, 38 (21%) had partial, and 137 (74%) had near to complete recanalization. The major periprocedural complication was new or increased intracerebral hemorrhage (10%). The use of AngioJet was associated with lower rate of complete recanalization (odds ratio, 0.2; 95% confidence interval, 0.09-0.4) and lower chance of good outcome (odds ratio, 0.5; 95% confidence interval, 0.2-1.0).Conclusions-Our systematic review suggests that mechanical thrombectomy is reasonably safe but controlled studies are required to provide a definitive answer on its efficacy and safety in patients with cerebral venous thrombosis.

Background and Purpose In patients with space-occupying middle cerebral artery infarction, surgical decompression strongly reduces risk of death and increases the chance of a favorable outcome. This comes at the expense of an increase in the risk of survival with (moderately) severe disability. We assessed quality of life, depression, and caregiver burden in these patients. Summary of Review We systematically reviewed the literature by searching MEDLINE, EMBASE, and PsycINFO up to March 2014. We included randomized controlled trials, cohort studies, case–control studies, and case series with quality of life, depression, or caregiver burden as primary or secondary outcome. Seventeen articles reporting on 459 patients were included. At final follow-up at 7 to 51 months, 1344 patients (30%) had died, and 34 (11%) were lost to follow up. Data on 291 patients were available, of whom 81 of 213 survivors (39%) achieved good functional outcome at final follow-up (modified Rankin Scale ⩽3). Mean quality of life was 46% to 67% of the best possible score when based on questionnaires or visual analogue scales. At final follow-up, 143 of 189 patients (76%) would in retrospect again choose for surgical decompression. Severe depressive symptoms were present in 14 of 113 patients (16%). Three studies investigated caregiver burden and reported substantial burden. Patients more than 60 years old had a lower quality of life in comparison with younger patients. Conclusions Most patients treated with surgical decompression for space-occupying infarction have a reasonable quality of life at long-term follow-up and are satisfied with the treatment received. Severe depressive symptoms are uncommon.