{"id":25286,"date":"2020-04-21T15:55:16","date_gmt":"2020-04-21T19:55:16","guid":{"rendered":"https:\/\/www.hydroassoc.org\/?page_id=25286"},"modified":"2026-03-11T11:18:13","modified_gmt":"2026-03-11T15:18:13","slug":"navigating-the-system","status":"publish","type":"page","link":"https:\/\/www.hydroassoc.org\/navigating-the-system\/","title":{"rendered":"Navigating Your Care"},"content":{"rendered":"\n\n\t
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\n\t\t\tNavigating your Care\t<\/h1>\n\t

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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.<\/p>\n

\n\t\t\tWhat You Need to Know\t<\/h2>\n\t

Find a Doctor<\/h3>\n

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.<\/p>\n

Learn More ><\/a><\/p>\n\t

Your Healthcare Team<\/h3>\n

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.<\/p>\n

Learn More ><\/a><\/p>\n\t

Questions for Your Doctor<\/h3>\n

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.<\/p>\n

Learn More ><\/a><\/p>\n\t

How to be an Assertive Member of Your Treatment Team<\/h3>\n

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.<\/p>\n

Learn More ><\/a><\/p>\n\t

Seeking a Second Opinion<\/h3>\n

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.<\/p>\n

Learn More ><\/a><\/p>\n\t

Coping with Hospital Stays<\/h3>\n

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.<\/p>\n

Learn More ><\/a><\/p>\n\t

Maximizing Your Doctor’s Appointments: Tips, Tools, and Insights<\/h3>\n

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.<\/p>\n

Learn More ><\/a><\/p>\n\t

Developing an Emergency Plan for Hydrocephalus Complications<\/h3>\n

Prepare for hydrocephalus complications with a personalized emergency plan, including symptoms, medical contacts, action steps, and an emergency kit for peace of mind.<\/p>\n

Learn More ><\/a><\/p>\n\t

Empowering Your Child to Be Their Own Advocate: Navigating Healthcare with Confidence<\/h3>\n

Empowering your child to advocate in healthcare builds confidence, communication skills, and independence for navigating lifelong medical care.<\/p>\n

Learn More ><\/a><\/p>\n\t

Managing Prescriptions as an Adult: Stay on Track Easily<\/h3>\n

Managing prescriptions as an adult? Stay on track with simple tips to organize meds, set reminders, and make prescription management easier.<\/p>\n

Learn More ><\/a><\/p>\n\t

Prescription Management: Helping Your Teen Master It<\/h3>\n

Prescription management is easier with routines, reminders, and safety tips, empowering your teen to take charge of their health with confidence.<\/p>\n

Learn More ><\/a><\/p>\n\t

Government Benefits for People Living with Hydrocephalus<\/h3>\n

Learn how government benefits support people with hydrocephalus through financial assistance, medical coverage, and programs that help improve daily life.<\/p>\n

Learn More ><\/a><\/p>\n\t

Medical Alert IDs and Hydrocephalus<\/h3>\n

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.<\/p>\n

Learn More ><\/a><\/p>\n

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My Hydro Bear: A Supportive Tool for Navigating Your Care<\/h3>\n

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.<\/p>\n

Order My Hydro Bear ><\/a><\/p>\n

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Ask the Expert Video Series: With No Problems, Should You See a Neurosurgeon?<\/h3>\n

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?<\/p>\n

Watch Now ><\/a><\/p>\n\n\r\n

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