Developing an Emergency Plan for Hydrocephalus Complications

Introduction to Hydrocephalus Emergency Planning

Living with hydrocephalus, or caring for someone with the condition, means being proactive about health. Complications can arise unexpectedly, and having an emergency plan in place can make a significant difference in managing these situations quickly and effectively. This article is designed to help individuals with hydrocephalus, as well as their parents and caregivers, develop a comprehensive emergency plan that accounts for potential complications.

Identify Potential Hydrocephalus Complications

Understanding the types of complications that can arise with hydrocephalus and how they might manifest is the first step in preparing for an emergency. Common complications include:

• Shunt malfunctions: Shunts are critical for managing hydrocephalus, but they can become blocked, displaced, or infected, leading to increased pressure in the brain.
• ETV Closure: Endoscopic third ventriculostomy (ETV) is a surgical procedure that can be used as an alternative to shunting. However, complications can arise, such as ETV closure, where the hole in the floor of the third ventricle becomes blocked or heals improperly, leading to increased intracranial pressure and the need for further intervention.
• Infections: Shunt infections can cause serious complications and require immediate medical attention.
• Overdrainage or Underdrainage: If the shunt drains too much or too little cerebrospinal fluid (CSF), it can cause symptoms like headaches, nausea, dizziness, or other neurological issues.

For more information on the complications of a shunt system, click here.

For more information on ETV complications, click here.

Recognizing the signs of these complications early can help you act quickly. Key symptoms include:

• Sudden, severe headaches
• Vomiting or nausea
• Changes in vision, speech, or cognition
• Unusual fatigue or confusion
• Fever (especially if there’s a shunt infection)

For more information on the symptoms of a shunt complication, click here.

For more information on the symptoms of ETV closure, click here.

Create a Medical Emergency Plan for Hydrocephalus

Every emergency plan should include clear instructions, contact information, and action steps. Ensure that all involved in the care of someone with hydrocephalus—whether they are parents, caregivers, or patients themselves—are familiar with the plan.

Emergency Contacts for Hydrocephalus Care

Make sure to have a list of essential contacts, including:

• Primary care physician, neurosurgeon or neurologist
• Emergency contacts (family members, close friends)
• Local emergency services and nearest hospital
• Insurance provider and policy details

Keep this list accessible in both digital and physical formats. Ensure caregivers, teachers, or others involved in the individual’s daily care are aware of these contacts.

Essential Medical Information for Emergencies

Have a comprehensive medical history ready that includes the following:

• A list of current medications (including dosage)
• A description of the shunt or any other medical devices in use
• Any known allergies (especially to medications or anesthesia)
• Detailed medical history (previous surgeries, procedures, or health conditions)
• Contact information for your medical team

Download our Medical History Template.

This information should be updated regularly. Consider using HydroAssist ®, HA’s mobile app, a tool that tracks symptoms, treatment history, surgeries, changes in settings, and much more. This app can be a valuable resource in emergencies, as it stores medical scans and enables quick access to key health data, making it easier for healthcare providers to assess the situation.

Action Steps for Hydrocephalus Complications in Emergencies

Every individual with hydrocephalus may experience complications differently, so it’s important to tailor your emergency plan to your specific symptoms, medical history, and treatment plan. However, the following general guidelines can serve as a starting point for managing hydrocephalus-related emergencies:

• Headaches: If a headache is sudden, severe, or doesn’t improve with usual treatments, seek medical attention immediately. It could indicate increased pressure in the brain, shunt malfunction, or other complications.
• Fever or Signs of Infection: If you or your loved one has a fever, chills, or other symptoms of infection (such as redness or swelling near a shunt or surgical site), it’s essential to contact a healthcare provider right away. In some cases, hospitalization and antibiotics may be required.
• Changes in Neurological Symptoms: If there are sudden changes in cognition, confusion, nausea, dizziness, or other neurological symptoms, it’s important to seek urgent medical evaluation. These could indicate shunt malfunction, ETV closure, or other neurological issues that require monitoring intracranial pressure or further interventions.
• ETV Complications: If you’ve undergone an ETV procedure and experience increasing symptoms of pressure or other complications (such as headache, nausea, or vomiting), it’s important to seek immediate medical attention to assess for possible ETV closure or other complications requiring surgical intervention.

The key is knowing your baseline symptoms and how your body typically reacts to treatments. If you’re ever unsure about the severity of the symptoms or how to proceed, don’t hesitate to seek medical attention as quickly as possible. In an emergency, your healthcare provider can guide you on the best course of action.

Prepare an Emergency Kit for Hydrocephalus Complications

Alongside your emergency plan, having a well-stocked emergency kit is helpful. This kit should be easy to carry and accessible. Include the following items:

• Copies of medical information (listed above)
• Medications and prescriptions (extra doses if possible)
• A list of medical providers and their contact information
• Comfy clothes (extra set for comfort during hospital visits or long waits)
• Toiletries (toothbrush, toothpaste, face wipes, etc.)
• A small blanket or pillow to make stays in emergency rooms or hospitals more comfortable
• Snacks and drinks (for long waits)
• Portable charger for your phone (in case of communication needs)
• Headphones, book, or entertainment to help reduce stress and keep calm during hospital visits or delays

Review, Update, and Share Your Hydrocephalus Emergency Plan

Once your emergency plan is created, it’s crucial to:

• Review it regularly: Medical situations can evolve, so your plan should be updated as needed. This includes making sure your emergency contacts are current and that any new medical conditions are included.
• Share it with others: Family members, caregivers, and anyone who might be involved in an emergency (teachers, friends, neighbors) should know the plan and where to find the necessary information.
• Teach others how to identify symptoms: Caregivers and family members should be familiar with the common signs of shunt failure, infection, or other complications. Educating them can help them respond quickly and appropriately.

Know Where to Seek Help for Hydrocephalus Emergencies

When a complication occurs, knowing where to go for help is critical. It’s important to:

• Go to a hospital with neurosurgical capabilities: If shunt failure or infection is suspected, seek immediate attention at a hospital equipped to handle these specific conditions.
• Pre-inform your hospital: Contact your neurosurgeon ahead of time so that the right medical team is prepared to assess the situation as soon as you arrive.

To find a doctor near you, search our Physicians’ Directory.

Emotional and Psychological Preparedness in Hydrocephalus Emergencies

Medical emergencies can be stressful for both the individual with hydrocephalus and their caregivers. It’s important to include mental and emotional preparedness in your emergency plan:

• Practice stress-reducing techniques like deep breathing or mindfulness to help stay calm in tense situations.
• Have a plan for emotional support, whether that means bringing a comforting item, having a trusted person with you, or using techniques to help you manage anxiety in emergencies.

Summary and Key Takeaways for Hydrocephalus Emergency Planning

Being prepared for hydrocephalus complications is essential to managing emergencies effectively. A comprehensive emergency plan includes knowing the signs of complications, having up-to-date medical information, outlining specific action steps, and ensuring that caregivers and loved ones are informed. Keep your emergency plan updated and share it with everyone involved in your care. Don’t forget to include an emergency kit to ensure comfort during hospital visits, and practice emotional preparedness to handle stress. By taking these steps, you will be better equipped to handle unexpected medical situations and provide your healthcare team with the information they need to act quickly. Preparedness allows you to stay in control, making emergencies less overwhelming for everyone involved.

Information you can trust! This article was produced by the Hydrocephalus Association, copyright 2025. 

This article is designed to provide helpful information on the subjects discussed. It is not intended as a substitute for treatment advice from a medical professional. For diagnosis or treatment of any medical condition, consult your doctor.