“With invisible illnesses, it’s easy for others to doubt your pain,” writes one adult diagnosed with hydrocephalus. At age 23, she began experiencing consistent dull headaches, pain and pressure behind her eyes. Thinking it was her worsening eyesight, she tried getting glasses, but her symptoms persisted. A doctor later told her that “headaches are the most common thing I treat for women of your age.”

But she knew it had to be more than that. After months of self-advocation, she was finally diagnosed with obstructive hydrocephalus and had surgery a few weeks later.

Sadly, however, for young and middle-aged (YMA) adults with hydrocephalus, this scenario may be far too common.

Prevalence estimates of symptoms of hydrocephalus in adults are rare, variable and not well documented. This can be frustrating for patients and physicians alike; the lack of available data can make it difficult for researchers to determine which symptoms to focus on for future study.

But in their recent study published in World Neurosurgery, Agarwal et al. hoped to gain some clarity on this issue.

Noting that young and middle-aged adults with hydrocephalus tend to be active on social media, Agarwal et al. decided to analyze social media posts from patients, caregivers, and the Hydrocephalus Association to create a patient-generated list of hydrocephalus symptoms ranked by importance to determine areas for future study.

Can a Facebook Post Uncover Common Symptoms of Hydrocephalus in Adults?

In October 2017, the Hydrocephalus Association and the Adult Hydrocephalus Clinical Research Network posted the following question to their Facebook pages:

“As an adult, what signs and symptoms do you experience that are related to your hydrocephalus and how does hydrocephalus impact your daily life?”

Of the 82 responses that had been given within seven days of the question being posted, eight respondents self-identified as caregivers responded on behalf of adults with hydrocephalus, while the remaining 72 identified as patients. Fifty-three of the patients had been treated for hydrocephalus.

The average age of the respondent was 42 and the average age of diagnosis was 39, with 18 out of the 37 respondents who listed their age reporting being diagnosed in adulthood.

After analyzing these responses, the study authors found that the following were the most commonly reported symptoms of hydrocephalus in adults, excluding descriptions related to shunt failure:


    • Headache was the most common symptom complaint, reported by 63% of respondents.
    • 50% of respondents also reported hypersensitivity to external stimuli such as light, noise, heat, or weather changes.
      • Of respondents who received treatment for hydrocephalus, 100% reported hypersensitivity to those stimuli as well
    • This is the first time this symptom has been reported in adult hydrocephalus patients and suggests that hypersensitivity may be a primary symptom of hydrocephalus or is secondary to headache.


    • Memory problems were the second most common symptom, reported by 37% of respondents.
    • 50% of these patients reported short-term memory problems specifically.
    • 45% of respondents reported combined difficulties with memory and other cognitive processes such as multitasking or organizing.


    • Balance was the third most commonly reported symptom, and 40% of respondents reported having balance problems combined with other mobility problems such as gait problems and dizziness.

Overall, 93% of respondents reported at least one sign or symptom. Of these patients, 99% reported at least one of the following: headache, cognition-related complaints, and mobility-related complaints with significant comorbidity among the symptoms.

The young and middle-aged adults with hydrocephalus in this study reported experiencing headaches significantly more than the general population, which indicates an opportunity for improved patient care as chronic headaches have been associated with signs of white matter integrity loss.

Additionally, over 90% of treated YMA patients experienced at least one of the three most common symptoms. These patients, the study authors argue, could benefit from new, renewed, or continued rehabilitation efforts.

Future research, they believe, should focus on the measurement of headache intensity, duration and associated disability as this has yet to be characterized in YMA patients. Hypersensitivity should also be characterized in future research using current standardized methods of quantitative sensory testing of cutaneous sensitivity of the head and face to mechanical and thermal stimuli.

Overall, given that the most common symptoms in adults with hydrocephalus were headache, cognitive defects and mobility, these should be prioritized in future research.

Utilizing the Patient Perspective in Hydrocephalus Research

Agarwal et al. note that their results support the concerns of the Translation to Transform (T2T) project, an initiative created by the Hydrocephalus Association in 2017 that aims to incorporate the patient perspective into hydrocephalus research.

The T2T project consisted of both an online webinar to educate patients and caregivers about the clinical trial process, and an in-person workshop for patients, caregivers, medical professionals and researchers to discuss clinical trial components and patient-centered outcomes.

The patients and caregivers were members of the Hydrocephalus Association’s Patient Partner Committee (PPC), and included parents of children diagnosed as infants, adults with hydrocephalus who were diagnosed as children or in young or middle age, and older adults with idiopathic normal pressure hydrocephalus (iNPH) and their caregivers.

After analyzing the results of a post-webinar survey given to the PPC as well as any notes they had, researchers found that while hydrocephalus research tends to prioritize neurosurgical outcomes, the PPC also had concerns about issues that do not fall within the scope of most neurosurgery departments:

    • Prenatal or infant diagnosis – the PPC felt that research for these patients should focus on new treatments and therapies that would improve cognitive and long-term functional outcomes as well as lowering risks of complications. This, they noted, would help reduce stress and anxiety on the family.
    • Adult diagnosis – for patients who were diagnosed with hydrocephalus as adults, or who were diagnosed with iNPH, the PPC felt that the focus should be on attaining full and sustained recovery of physical and cognitive function as well as the development of non-surgical therapies.

Based on the PPC’s findings, researchers believe that future clinical trials should incorporate HCPs from disciplines such as neuropsychology, ophthalmology, and pain management so that complications outside of the neurosurgical field can be addressed.

Overall, they determined that patient priorities and patient-centered outcomes should be considered in pre-clinical and clinical research in the future in order to best improve the lives of all affected by hydrocephalus.

For more information about the T2T Project, click here.

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