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World Neurosurg. 2019 Feb;122:e307-e314. doi: 10.1016/j.wneu.2018.10.027. Epub 2018 Oct 12.

Observations from Social Media Regarding the Symptomatology of Adult Hydrocephalus Patients.

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Department of Neurological Surgery, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania, USA.
Hydrocephalus Association, Bethesda, Maryland, USA.
Department of Neurological Surgery, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania, USA. Electronic address:



Patients with hydrocephalus experience symptoms related to hydrocephalus in an age-dependent manner. However, prevalence estimates of hydrocephalus symptoms in young and middle-aged (YMA) adult patients are rare and variable. Highlighting the importance of hydrocephalus symptom management, the persistence and intensity of headache or gait disturbance have been associated with signs of brain white matter integrity loss, including in treated YMA adult patients. Thus, it is important to ascertain which symptoms adult patients with hydrocephalus report most to confirm their relative importance.


Observations of symptom complaints were made from publicly viewable online responses to an inquiry posted by the Hydrocephalus Association to 2 Facebook webpages.


Within 7 days of inquiry posting, 381 complaints of signs and symptoms were identified in 82 online responses. Headache, cognitive deficits (cognition and memory), and mobility issues (dizziness, balance, or gait problems) were most commonly reported by 63%, 45%, and 40% of respondents, respectively. Results were highly similar for the subgroup of 53 patients reported as treated. For self-identified YMA patients (<60 years old), results were similar, but with fewer mobility complaints. Not previously reported, hypersensitivity to external stimuli was reported by one-half of the patients that reported headache.


The current results provide further quantitative support for the prioritization of study of headache, cognitive deficits, and mobility issues in YMA adult patients with hydrocephalus. Warranting further study, cranial hypersensitivity to external stimuli may represent a novel outcome measure, and treated YMA adult hydrocephalus patients continue to report symptoms associated with signs of brain damage.


Cognition; Headache; Memory; Mobility; Patient participation; Review; Social Media

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