Navigating your Care
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Once you receive a hydrocephalus diagnosis choosing your doctor is one of the most important decisions you will make. We have developed resources to help you learn more about the different types of specialists who care for people with hydrocephalus. We also offer suggestions on finding the ones that are right for you.
What You Need to Know
Find a Doctor
To help you in the process of building your healthcare team, HA has developed the Physician Directory. This first-ever physician finder tool allows you to search by location, specialist, and/or age served.
Your Healthcare Team
Hydrocephalus is a complex condition and the long-term effects and other related symptoms or conditions can vary greatly from person to person. Therefore, your doctor will tailor a treatment plan to your overall health and specific needs. Living well with hydrocephalus often requires a team of healthcare providers. Together, you’ll monitor your condition and each specialist will work to ensure you can live a full and active life.
Questions for Your Doctor
Creating and maintaining a good relationship with qualified doctors is vital in overall healthcare planning. We have compiled lists of questions that we believe will help you discover important information and establish a good relationship.
How to be an Assertive Member of Your Treatment Team
People with hydrocephalus and their caregivers are highly encouraged to become active, assertive members of a healthcare team. Here you will find a list of tips on how to best fill your role on such a team.
Seeking a Second Opinion
Even though second opinions are a common and accepted practice in medicine, many people feel uncomfortable asking for them. This page is meant to empower you to do what is best for you, or your family member with hydrocephalus.
Coping with Hospital Stays
If you have hydrocephalus, the hospital may be a very familiar place. Whether you’ve needed to visit several times or just a couple, you’ve probably learned that every hospital stay varies. We compiled some ideas and tips that we hope will help you prepare physically, mentally, and emotionally for future (or current) trips.
Maximizing Your Doctor’s Appointments: Tips, Tools, and Insights
Doctor’s appointments can be overwhelming, but preparation is the key to making them count. This article offers practical tips, trusted resources, and insights from those living with hydrocephalus to help you take charge of your healthcare journey and get the answers you need.
Switching Hydrocephalus Doctors: A Smooth Transition
Learn how to switch hydrocephalus doctors, prepare for planned or unexpected changes, organize your medical history, and maintain continuity of care.
Developing an Emergency Plan for Hydrocephalus Complications
Prepare for hydrocephalus complications with a personalized emergency plan, including symptoms, medical contacts, action steps, and an emergency kit for peace of mind.
Empowering Your Child to Be Their Own Advocate: Navigating Healthcare with Confidence
Empowering your child to advocate in healthcare builds confidence, communication skills, and independence for navigating lifelong medical care.
Managing Prescriptions as an Adult: Stay on Track Easily
Managing prescriptions as an adult? Stay on track with simple tips to organize meds, set reminders, and make prescription management easier.
Prescription Management: Helping Your Teen Master It
Prescription management is easier with routines, reminders, and safety tips, empowering your teen to take charge of their health with confidence.
Government Benefits for People Living with Hydrocephalus
Learn how government benefits support people with hydrocephalus through financial assistance, medical coverage, and programs that help improve daily life.
Medical Alert IDs and Hydrocephalus
Without proper ID of a medical condition, common symptoms can be misdiagnosed and appropriate care could be jeopardized or delayed. Learn more about Medical Alert IDs.
Medical History Form
A printable form for recording healthcare providers, emergency contacts, surgeries, hydrocephalus treatment information, shunt settings, medical conditions, allergies, and medications.
Download HydroAssist®
Download our mobile app to manage your treatment history, record changes, track your symptoms, and securely store scans. HydroAssist® is a great tool for youth and parents to manage care together.
My Hydro Bear: A Supportive Tool for Navigating Your Care
Understanding hydrocephalus and explaining treatment can be challenging at any age. My Hydro Bear has a shunt, offering a simple visual that helps individuals and families talk through how treatment works, prepare for appointments, and navigate important care decisions. It can also make conversations with loved ones and care teams clearer and more comfortable throughout every stage of the care journey.
Ask the Expert Video Series: With No Problems, Should You See a Neurosurgeon?
In this episode of our Ask the Expert Video Series, Drs. Mark Luciano and Abhay Moghekar, from Johns Hopkins Medicine, discuss whether hydrocephalus patients should see a neurosurgeon or neurologist even if they don’t have any problems with their shunt or ETV. And if so, how often should you see your neurologist or neurosurgeon?
I Can Relate Video Series: Can You Hear Your Shunt?
In this I Can Relate video, Cree shares her personal experience with being able to hear her shunt.
Who Freaks Out More When It’s Time for Brain Surgery?
Cree shares a teen’s perspective on the anxiety she and her parents experience when it’s time for brain surgery in this I Can Relate video.