Idiopathic Intracranial Hypertension - Washington State University

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The Costs of a Quiet DisorderThe Costs of a Quiet Disorder: Direct and Indirect Costs of Idiopathic IntracranialHypertensionINTRODUCTIONIdiopathic Intracranial Hypertension (IIH; pseudotumor cerebri) is a disorder with areported incidence rate of one to three per 100,000 people in the general population. The rateamong obese females of childbearing age is approximately 20 out of every 100,000 (1,9,17,25).As its name suggests, the disorder arises from unknown causes, and manifests itself in the formof elevated cerebrospinal fluid pressure within the skull. Those afflicted with IIH oftenexperience an array of signs and symptoms suggestive of IH, including papilledema, severeheadaches, visual disturbances and pulsatile synchronous tinnitus, which can severely limitfunctional independence and quality of life (8,19,20).Little is known about the origin of the disorder, nor has evidence-based medicineidentified the most efficient and effective treatment path (3,21). Treatment is primarilypalliative, beginning with medical therapy and progressing to surgical therapy (3,9). Medicinaltreatments generally employ carbonic anhydrase inhibitors such as acetazolamide (Diamox).Alternative medications (including furosemide (Lasix) and topiramate (Topamax)) are prescribedto patients unable to tolerate acetazolamide or in various therapeutic combinations. Surgicalprocedures (including optic nerve sheath fenestration and neurosurgical shunts) are oftenperformed when patients do not respond to pharmaceutical interventions and vision loss ispotentially eminent. For obese patients weight loss (and in extreme cases, bariatric surgery) isprescribed in conjunction with medicinal and/or surgical treatments, and when successful usuallyreduces IIH-related symptoms (27). Stenting for cerebral sinus stenosis, although sometimeused, remains controversial (10,11).3
The Costs of a Quiet DisorderThe lack of an efficient and effective treatment path is due to failure to understand theunderlying pathophysiological mechanism of the disorder. Individuals are diagnosed with IIHafter exhausting all other possible identifiable causes, such as the presence of a tumor or drugtoxicity (20). Any patients without a detectable cause, and whose signs and symptoms meet theModified Dandy Criteria, are diagnosed with IIH (9: See Table 1).Many physicians believe IIH is a diagnosis of abnormal CSF hydrodynamics made byexcluding known secondary causes of intracranial hypertension and, therefore, they require thatthe Dandy criteria be fulfilled before a diagnosis of IIH can be made (4,12,22,24). Diagnosis cansometimes be difficult if several of the prominent features are not apparent or absent such aspapilledema and pulse synchronous tinnitus or if a marginally high opening pressure reading isobtained on lumbar puncture.We have elected to describe this as a “quiet” disorder not in reference to the symptoms ofIIH patients who can be victims of unremitting, intense head pain as well as possible vision lossbut rather because of three under-recognized major management factors. First, there is a problemof resource fragmentation. Professional attention tends to focus on the underlying disease and isfragmented among many different specialists, so the scope and magnitude of the IH problem isnot recognized by some physicians, healthcare institutions or public policy leaders. Second,there is a problem of diffusion of responsibility in patient care. No single physician is likely tohave a complete picture of any individual patient’s overall history because evaluation andtreatment usually involves several different specialties, none of whom are likely to have globalresponsibility for the patient’s management. The third problem centers on unsatisfactorytreatment options. After more than 100 years, IIH management remains, for the most part,unsatisfactory. Shunts to divert CSF are often of benefit in about 50% of patients, but are subject4
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Idiopathic Intracranial Hypertension - Washington State University

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