New Hydrocephalus Diagnosis: What to Do Next

You’re Not Alone: Take This One Step at a Time

If you or someone you love has just been diagnosed with hydrocephalus, it is normal to feel overwhelmed. You may feel relieved to have answers while also feeling afraid, confused, or uncertain about what comes next.

You do not need to learn everything today. Begin with the steps that will help you understand the diagnosis, prepare for appointments, and know when to seek medical attention.

Your first five steps:

Ask your healthcare provider to explain the diagnosis and what it means for you or your loved one.
Learn about the recommended treatment and follow-up plan.
Know which symptoms require urgent medical attention.
Record important treatment and healthcare information.
Connect with reliable information and support.

Find Information for Your Situation

Hydrocephalus affects people of all ages, but the diagnosis, treatment, and next steps may differ depending on a person’s age and the cause of the condition.

Choose the path that best fits your situation:

You can also watch our About Hydrocephalus video or visit the Hydrocephalus Frequently Asked Questions for a clear introduction to the condition, its causes, symptoms, and treatments.

Understand the Diagnosis

Hydrocephalus is a complex condition that affects each person differently. Understanding the specific diagnosis can help you make informed decisions and know what to expect.

Consider asking your healthcare provider:

What type of hydrocephalus do I or my loved one have?
What caused it, if the cause is known?
Is the condition stable, or does it require urgent treatment?
Are additional tests or imaging needed?
What symptoms may be related to hydrocephalus?
What treatment do you recommend, and why?
What could happen if treatment is delayed?
Who will oversee ongoing hydrocephalus care?
How often will follow-up appointments or imaging be needed?

Write down your questions before each appointment. It may also help to bring a trusted family member or friend who can listen, take notes, and help you remember the information discussed.

HA has developed question lists to help you prepare:

Build Your Hydrocephalus Care Team

A neurosurgeon typically oversees the surgical treatment of hydrocephalus. Depending on the person’s age, symptoms, and medical needs, the care team may also include:

A primary care provider or pediatrician
A neurologist
An ophthalmologist
A rehabilitation medicine specialist
Physical, occupational, or speech therapists
Developmental or educational specialists
A neuropsychologist
Other specialists related to the underlying cause of hydrocephalus

Before leaving an appointment or the hospital, make sure you know:

Who is responsible for ongoing hydrocephalus care
Who to contact with nonurgent questions
Who to call if symptoms develop after regular office hours
Which hospital to visit in an emergency
When the next appointment should be scheduled
Whether follow-up imaging will be needed

If you need help finding a specialist, use HA’s Physicians’ Directory

Understand the Treatment Plan

Hydrocephalus is most commonly treated with a shunt system or an endoscopic third ventriculostomy (ETV). In some cases, ETV may be combined with choroid plexus cauterization (ETV/CPC).

The most appropriate treatment depends on factors such as age, anatomy, the type and cause of hydrocephalus, previous treatment, and the healthcare team’s clinical assessment.

Ask your neurosurgeon:

Which treatment do you recommend, and why?
What are the potential benefits and risks?
Are other treatment options appropriate?
How will we know whether the treatment is working?
What complications should we watch for?
What will follow-up care involve?
Will there be any activity or medical restrictions?
Who should we contact if we have concerns after treatment?

Learn more about:

Treatment controls hydrocephalus, but it does not eliminate the need for ongoing care. Shunts can malfunction or become infected, and an ETV can close, even after a long period without complications.

Know the Warning Signs

Learning the signs of a possible treatment complication is one of the most important steps after a hydrocephalus diagnosis.

Symptoms differ from person to person and may vary by age. Common warning signs can include:

Create a Treatment Record

Keeping accurate information about your hydrocephalus treatment can help during appointments, imaging, travel, and emergencies.

Record:

The type and cause of hydrocephalus, if known
The date of each hydrocephalus procedure
Shunt manufacturer, valve model, and valve setting (if programmable)
The location of the shunt and where it drains
ETV or ETV/CPC treatment history
Shunt revisions or previous treatment complications
Current medications and allergies
Neurosurgeon and hospital contact information
Typical symptoms and symptoms experienced during previous treatment failures
Relevant MRI or CT images and reports

Ask your neurosurgeon whether a baseline scan is available. A baseline image taken when treatment is working can be useful for comparison if symptoms develop later.

Keep your information organized with HydroAssist®

HydroAssist® is the Hydrocephalus Association’s free mobile app. It allows individuals and caregivers to store treatment information, imaging, medical documents, healthcare contacts, and symptom history in one place.

You can also use HydroAssist® to track symptoms and share information with members of your healthcare team.

Learn more about HydroAssist®.

Develop an Emergency Plan

You should not have to create an emergency plan while you are already facing an emergency. Work with your healthcare team to prepare one in advance.

Your plan should include:

The symptoms that require immediate attention
Your neurosurgeon’s contact information
The number for the after-hours or on-call neurosurgery team
The hospital you should visit
A current treatment and medication list
Instructions for family members, caregivers, schools, or workplaces
A plan for transportation and childcare, if needed
A hospital bag with essential items
A backup copy of important information in case your phone is unavailable

Consider wearing a medical alert ID that identifies hydrocephalus and your treatment, particularly if you might be unable to communicate during an emergency.

Adjusting to Daily Life

A common question after diagnosis is, “What will life look like now?”

There is no single answer. Some people return to many of their usual activities, while others need additional treatment, rehabilitation, educational support, workplace accommodations, or changes to their routines.

Over time, you may learn how to:

Recognize your typical symptoms and changes that require attention
Manage appointments, treatments, and medication
Plan around fatigue, headaches, or other symptoms
Return to school, work, exercise, or other activities safely
Explain hydrocephalus to family members, teachers, employers, or friends
Balance independence with support

Ask your healthcare provider whether there are activities you should temporarily avoid and when you can safely return to school, work, driving, exercise, or other parts of your routine.

Explore HA’s Daily Life resources for guidance on physical activity, symptom management, emotional well-being, education, employment, relationships, and independence.

My Hydro Bear: Helping children understanding hydrocephalus

Explaining hydrocephalus and its treatment can be difficult for children. My Hydro Bear is an educational and emotional-support tool designed to help children visualize a shunt, discuss medical experiences, and feel less alone.

Order your My Hydro Bear.

Find Support and Connection

Hydrocephalus can feel isolating, but you do not have to navigate it alone.

HA Helpline

Contact the Hydrocephalus Association (HA) Helpline to speak with staff who can provide educational information, resources, and support.

HydrocephalusCONNECT

HydrocephalusCONNECT provides one-to-one peer support from a trained volunteer who understands the challenges of living with hydrocephalus or caring for someone with the condition.

Community Networks

HA’s Community Networks offer in-person and virtual opportunities to connect with individuals and families, attend educational events, and receive support.

RAISE Resilience Program

RAISE is a six-module, research-informed resilience program for parents and primary caregivers of children ages 0–18 with hydrocephalus. The program provides practical tools to support caregiver well-being.

Even one conversation with someone who understands can help you feel less alone.

Continue Learning at Your Own Pace

Once your immediate medical questions and safety needs have been addressed, you can continue learning as you feel ready.

The Hydrocephalus Resource Library brings together articles, videos, guides, webinars, and personal stories covering every stage of the hydrocephalus journey.

Moving Forward After a Hydrocephalus Diagnosis

A hydrocephalus diagnosis can change many aspects of life, but it does not define you or your loved one.

Begin by understanding the diagnosis, learning the treatment plan, recognizing warning signs, and knowing whom to contact when questions arise. The rest can come with time.

You will continue to learn what hydrocephalus looks like for you or your family. As you do, HA is here to provide trusted information, practical tools, and connection throughout the journey.

Remember, we are with you along the way.

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