Long-term follow-up of idiopathic intracranial hypertension: the Iowa experience

Abstract

Objective: To evaluate recurrent or delayed worsening of papilledema and visual function in patients with idiopathic intracranial hypertension (IIH) followed for more than 10 years.

Methods: This is an Institutional Review Board approved retrospective chart review of 410 patients with the diagnosis of IIH evaluated at the University of Iowa Hospitals and Clinics from January 1984 to January 1996. Of the 410 patients, 20 patients with IIH who were followed over 10 years at the neuro-ophthalmology clinic met the inclusion criteria. Three neuro-ophthalmologists independently evaluated and graded the visual field examinations and optic disc stereo-photographs for each follow-up visit (median = 15).

Results: Of the 20 patients, 11 demonstrated a stable course of disease without worsening in papilledema or visual field, and 9 patients worsened after a stable course. Of these 9 patients, 6 patients experienced delayed worsening (range: 28 to 135 months from presentation) and 3 patients had recurrence after resolution of papilledema 12 to 78 months from initial resolution of the IIH.

Conclusion: Idiopathic intracranial hypertension is a chronic condition that may worsen after a period of stability, warranting long-term follow-up.