Management of Idiopathic Intracranial Hypertension (IIH) is not standardised. A multidisciplinary Special Interest Group (SIG) was established to develop a uniform investigation and treatment strategy according to disease severity based on current literature and expert consensus.
Methods A systematic literature review of “IIH”;“Benign IH” and “pseudotumour cerebri” was followed by a SIG meeting, to identify the population, interventions, controls and outcomes (PICO) questions. Discrepant views were reflected in a questionnaire disseminated though a modified Delphi approach to district general and tertiary hospital interdisciplinary specialists.
Results 44/66 questionnaires were returned. 51% would image (CT/MRI) patients with definite papilloedema <24 hrs and 40% would image between 24–48 hrs. In these patients 84% would then proceed to venography (50:50, MRV:CTV), conducted within 48 hrs in 74% respondents.79% never diagnosed IIH in those with a lumbar puncture pressure <25 cm CSF. Referral for neurosurgical intervention was predominantly for visual deterioration (83%) with only 2% referring exclusively for headache management. Neurosurgical procedures varied: 48% ventriculoperitoneal shunting, 33% lumboperitoneal shunting, 5% optic nerve sheath fenestration, 14% other and 0% venous stenting. A consensus on follow-up times, according to papilloedema severity and visual function (perimetry), was obtained.
Conclusions Evidence for IIH management is minimal. Consensus on many aspects of management was demonstrated which will help establish a practical guideline.
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