Clinical course of asymptomatic patients with papilledema from idiopathic intracranial hypertension.

Objective: Idiopathic intracranial hypertension (IIH) is defined as elevated intracranial pressure (ICP) with normal cerebrospinal fluid content in the absence of an identifiable cause. Patients often experience symptoms related to elevated ICP (e.g., headache); however, a subgroup of patients with elevated ICP may have optic disc edema without any associated symptoms. There are limited data about this subgroup in the literature. Our aim in this study was to characterize the initial clinical findings and visual outcomes over the follow-up period in this group of asymptomatic patients.

Methods: We performed a retrospective review of all patients who were referred to the neuro-ophthalmology service at Baylor College of Medicine for evaluation of papilledema between January 2012 and June 2020. Medical records of 139 consecutive patients with papilledema were reviewed. Patients were included in the analysis if they met the criteria for the diagnosis of IIH, had bilateral optic disc edema, and did not have any symptoms of elevated ICP.

Results: Of the 139 charts reviewed, 5 patients met the inclusion criteria. All 5 patients were female with a mean age of 25.2 years (range, 13-48 years). The mean body mass index was 36.3 kg/m2 (range, 31.5-40 kg/m2), and the mean follow-up period was 3 years (range, 12 months-5 years).

Conclusion: Our results demonstrate that the disease course for patients who present with asymptomatic IIH can be variable, yet still visually significant. Despite the absence of symptoms, patients can progress to symptomatic disease or experience persistent optic disc swelling or pallor even with the use of medication to lower ICP. To our knowledge, this is the first retrospective study characterizing the clinical course of papilledema from IIH in asymptomatic individuals.