You or Your Loved One Has Just Been Diagnosed – What’s Next?

In This Article
    Add a header to begin generating the table of contents

    Have you or your loved one been newly diagnosed with hydrocephalus? Facing chronic conditions can be a lot to take in. When a child, family member, or loved one is diagnosed with hydrocephalus it can cause mixed emotions. The diagnosis is complex and frustrating. It can trigger emotions from solace to sadness, anger to acceptance. It’s a slight relief because we finally know what the problem is. However, we’re frustrated wondering why he or she has to be diagnosed with this condition or why they went undiagnosed for so long.

    Hydrocephalus can impact not only the person with the condition but also family, friends, and loved ones. The challenges of living with a chronic condition or caring for a chronically ill parent, child, or partner are stressful for all involved. Adults may resent their dependence on a spouse, child, or other family members. Parents may feel guilty. It’s important to know there are no right or wrong emotions. Acknowledging emotional responses to this chronic and potentially disturbing condition can help all those involved.

    Your mind is probably filled with questions and concerns. Or, you are feeling so overwhelmed by the diagnosis you don’t know what questions to ask. There is no simple way to deal with the diagnosis, but there is help. We will take you through the next steps to better understand the condition and ongoing management.

    Step 1: Educate Yourself

    Learn as much as possible about the condition and educate your family. The unknown can be frightening and can make you feel powerless. Educating yourself will empower you and your loved ones. The more you are aware of what to expect, the more prepared you can be to meet any challenges along the way.

    The Hydrocephalus Association is your trusted source for information at every stage of life. We offer programs and services and resources that provide life-changing support to people living with hydrocephalus and their loved ones — from educational booklets and articles to webinars and videos.

    Hydrocephalus in Pregnancy

    Hydrocephalus in Infants and Children

    Hydrocephalus in Adults

    Normal pressure hydrocephalus (NPH)

    Step 2: Understand How to Navigate Your Care

    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 and preparing you for your appointment.

    Find a Doctor

    Your Healthcare Team

    Step 3: Understand Your Treatment Options

    Though it can be overwhelming at first, learning about treatment options is an important step in being proactive. Everyone is different, and keeping yourself informed about treatments and how they affect you will help you and your doctor decide on the best approach.

    Shunt Systems

    ETV and ETV with CPC

    Preparing for Surgery

    Step 4: Learn How to “Live Your Best Life with Hydrocephalus”

    Hydrocephalus can be complex and unpredictable as it can create many medical, financial, and social challenges, and can impact your ability to live independently. With your diagnosis behind you, it’s time to begin the journey of learning to manage and live well with hydrocephalus. By learning more about ongoing management you’ll feel more in control and be able to make informed decisions regarding your lifestyle and medical care.

    Daily Life

    Life Transitions

    Caring for Your Child

    Living with NPH

    Step 5: Get Support

    A particular characteristic of hydrocephalus is that symptoms and challenges are often invisible to others, which can lead to a feeling of isolation. Life with hydrocephalus can be difficult enough. Building a strong support system will provide you with more options and inspire you to look for the positive in difficult situations. The Hydrocephalus Association is here to help you on this journey. Our staff and volunteers are ready to answer your questions and listen to your concerns by phone or email. Learn more about the support services we offer.


    Peer Support

    Find a Community Network

    Step 6: Get Involved

    Do you want to make a difference for yourself, your loved one, and the over a million people living with hydrocephalus? Learn more about the ways you can become more involved through volunteering, raising awareness, participating in a WALK to End Hydrocephalus near you, supporting our research efforts, or making a donation.

     Remember we are with you along the way.

    Was this article helpful?

    Thanks for your feedback!