COVID-19 Guidance for People Living with Hydrocephalus

HA Medical Advisory Board Recommendations Regarding COVID-19 for Patients with Hydrocephalus

HA COVID-19 Update April 17, 2020

APRIL UPDATE REGARDING NEUROLOGIC SYMPTOMS WITH COVID-19: Since the beginning of April 2020, the peer-reviewed medical literature has described patients with neurologic symptoms associated with COVID-19 infection, and some instances of brain injury or involvement.  These reports have been the subject of several stories in the print media, web sites, and broadcast media. In nearly all cases, the neurologic symptoms or the injury to the brain can be attributed to the serious, life-threatening systemic illness and inflammatory response associated with COVID-19 affecting the brain, and is not the result of the brain being infected by COVID-19.  Among the more than 2.1 million cases of COVID-19 documented worldwide as of April 16, 2020, only 1 or 2 cases of the brain being directly infected by COVID-19 have been documented. The Medical Advisory Board wishes to re-emphasize its prior guidance. The chances of brain infection by COVID-19 are exceedingly small. The primary concern for people living with hydrocephalus should be the significant risk of the respiratory infection associated with COVID-19. Everyone should continue to follow CDC guidance, as well as federal, state, and local governmental guidance to prevent the spread of COVID-19.

Key Points: Hydrocephalus by itself is not a risk factor for contracting COVID-19 or developing severe COVID‑19 disease. Hydrocephalus treatment (shunt or ETV) does not increase a person’s risk for contracting COVID‑19 or developing severe COVID-19 disease. COVID‑19 does not increase a person’s risk of developing a shunt infection. People with hydrocephalus who are over 60, and those of any age who have coexisting health conditions, such as heart disease, diabetes, immune suppression, or lung disease, should consider themselves in the higher-risk population, as described by the CDC Nobody is immune from COVID-19. Persons of all ages, including infants, children, teens, young and middle-aged adults, and the elderly, are at risk for contracting COVID‑19, including a risk for developing severe COVID-19 disease. Fear of COVID‑19 should not stop you from seeking necessary medical care, but call your physician’s office first so that they can recommend how and where to be treated. If you are experiencing symptoms that are concerning for shunt malfunction or another issue that could be harmful to you if not addressed promptly, please contact your physician’s office, or, if there is an emergency, call 911 or the number for emergency services in your community. The only way to avoid and defeat COVID-19 is to prevent it from spreading. Everyone should follow CDC guidance, as well as federal, state, and local governmental guidance to stay safe at home, to leave home only if necessary, to avoid large gatherings as defined by your state and local health department, to practice social distancing (keeping space between yourself and others), to wash your hands often, and to avoid non-essential travel. State and local governments are expected to begin easing stay-at-home orders and restrictions on public gatherings sometime in the Spring or Summer of 2020. The Medical Advisory Board advises the public that even though the policies and restrictions may be eased,  the risk of COVID-19 spread and infection will continue to be present, as only a small percentage of the population have been infected, many persons who have the COVID-19 virus have no symptoms or mild symptoms and can unknowingly spread it to others, and nobody is immune from COVID-19. Therefore, everybody should monitor guidance from the CDC and federal, state, and local governments so that they can follow the best practices to prevent themselves from becoming infected.

An issue of great concern to our members is whether hydrocephalus is considered a risk factor for contracting or developing severe COVID-19.

After a review of the published medical literature, the Chair and Vice-Chair of the HA Medical Advisory Board, Dr. Michael A. Williams and Dr. Mark G. Hamilton, state that hydrocephalus has not been mentioned as a specific risk factor for contracting or developing severe COVID-19 in adults or children.

However, many persons of all ages with hydrocephalus have coexisting health conditions, and they should consider themselves in the higher-risk population, as described by the CDC, which includes older adults or those of any age with serious long-term health problems, such as heart disease, diabetes, or lung disease, as well as other ongoing serious health conditions.

In addition, there is no known increase in the risk of contracting or developing severe COVID-19 solely because a person has been treated with a shunt or has had an endoscopic third ventriculostomy (ETV). For persons with hydrocephalus and a shunt who have contracted COVID-19, there is no known increase in the risk of developing a shunt infection.

Since the beginning of April 2020, the peer-reviewed medical literature has described patients with neurologic symptoms associated with COVID-19 infection, and some instances of brain injury or involvement.  These reports have been the subject of several stories in the print media, web sites, and broadcast media. In nearly all cases, the neurologic symptoms or the injury to the brain can be attributed to the serious, life-threatening systemic illness and inflammatory response associated with COVID-19 affecting the brain, and is not the result of the brain being infected by COVID-19.  Among the more than 2.1 million cases of COVID-19 documented worldwide as of April 16, 2020, only 1 or2 cases of the brain being directly infected by COVID-19 have been documented. The Medical Advisory Board wishes to re-emphasize its prior guidance. The chances of brain infection by COVID-19 are exceedingly small. The primary concern for people living with hydrocephalus should be the significant risk of the respiratory infection associated with COVID-19. Everyone should continue to follow CDC guidance, as well as federal, state, and local governmental guidance to prevent the spread of COVID-19.

What Does “Severe COVID-19 Disease” Mean? 

Nearly all patients with severe COVID-19 have had pneumonia, and many have then developed  difficulty breathing (acute respiratory distress syndrome (ARDS)), which requires insertion of a breathing tube and support from a ventilator and treatment in an ICU. Many of the patients also experience other significant complications, including very low blood pressure requiring treatment (shock), abnormal blood clotting, and effects on the function of the liver and kidneys.

What Should Persons with Hydrocephalus and Their Families Know about COVID-19?

• Hydrocephalus by itself has not been identified as a risk factor for severe COVID-19.
• Persons with normal pressure hydrocephalus (NPH) should consider themselves at high risk for severe COVID-19, but not because they have NPH. Persons with NPH are at risk because they are over age 60 years, and many have coexisting conditions, such as hypertension, diabetes, cardiovascular disease, and other conditions that can make it more difficult to survive the viral pneumonia, ARDS, and complications of critical illness that are seen in severe COVID-19 disease.
• With the exception that infants below the age of 1 year are at an increased risk of severe disease, the risk factors for severe COVID-19 in children are uncertain. The medical literature shows that children are either less likely to contract COVID-19, or that they generally have milder disease. The American Academy of Pediatrics offers guidance at their Healthy Children web site.
• Many persons of all ages with hydrocephalus have coexisting health conditions, and those individuals should consider themselves in the higher-risk population, as described by the CDC, which includes older adults or those of any age with serious long-term health problems, such as heart disease, diabetes, or lung disease, as well as other ongoing serious health conditions.
• Because severe COVID-19 primarily affects the lungs, persons with lung disease or medical conditions that can affect breathing should be cautious. Lung disease includes asthma, COPD, emphysema, the need for supplemental oxygen, the need for chronic ventilator support, the presence of a tracheostomy, as well as other lung disorders.
• Persons with hydrocephalus of any age can try to estimate their risk for severe COVID-19 disease by assessing whether they have other chronic health conditions, as well as the nature of their health conditions.
• If you are in doubt or unsure about your risk category, we recommend that you follow CDC guidance, as well as federal, state, and local governmental guidance to stay safe at home, to leave home only if necessary, to avoid large gatherings as defined by your state and local health department, to practice social distancing (keeping space between yourself and others), to wash your hands often, and to avoid non-essential travel.

Clarification from the CDC: Inclusion of Neurological Conditions in At-Risk Group

The CDC appears to give conflicting information with respect to the risk of developing severe symptoms associated with underlying neurological conditions. The main CDC webpage that shows risk factors for severe illness does not include any neurological disorders. However, a CDC document on mitigation strategies for communities with local COVID-19 transmission that was released in early March 2020 includes “Neurological and neurologic and neurodevelopment conditions” in a list of underlying medical conditions that may increase the risk of serious COVID-19 for individuals of any age.  This document does not say why these conditions are included or how they increase the risk of severe disease with COVID-19.

Diana Gray, CEO of the Hydrocephalus Association, obtained an answer from the CDC during a teleconference on March 18, 2020.  The list of disorders in the mitigation strategies document was taken from a pre-existing list of conditions that increase the risk of severe influenza, and it is not specific for COVID-19. As of April 1, 2020, neurologic disorders do not appear to be a risk factor for developing severe COVID-19 disease.

Recommendations for the Hydrocephalus Community At Large

• The only way to avoid and defeat COVID-19 is to prevent it from spreading. Everyone should follow CDC guidance, as well as federal, state, and local governmental guidelines.
• Avoid travel to hospitals, clinics, or physician offices to prevent exposure to COVID-19. If you have a scheduled appointment with your physician for a routine visit that could be safely delayed, we recommend you speak with your physician’s staff to see if the physician agrees that your appointment can be safely delayed.
• Do not let fear of COVID-19 keep you from seeking necessary care for your hydrocephalus. If you are experiencing symptoms that are concerning for shunt malfunction or another issue that could be harmful to you if not addressed promptly, please contact your physician’s office, or, if there is an emergency, call 911 or emergency services in your community.
• Obtain information about COVID-19 from reliable resources, including the Centers for Disease Control, Health Canada, the World Health Organization, state or provincial health boards, and the Hydrocephalus Association. Please be careful not to respond to information on the internet that may be untrustworthy, or that may try to sell you bogus advice or treatments for COVID-19 (i.e., scams).
• State and local governments are expected to begin easing stay-at-home orders and restrictions on public gatherings sometime in the Spring or Summer of 2020. The Medical Advisory Board advises the public that even though the policies and restrictions may be eased,  the risk of COVID-19 spread and infection will continue to be present, as only a small percentage of the population have been infected, many persons who have the COVID-19 virus have no symptoms or mild symptoms and can unknowingly spread it to others, and nobody is immune from COVID-19. Therefore, everybody should monitor guidance from the CDC and federal, state, and local governments so that they can follow the best practices to prevent themselves from becoming infected.