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Switching Hydrocephalus Doctors: A Smooth Transition

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    Why You May Need to Switch Hydrocephalus Doctors

    Switching doctors can happen for many reasons, including transitioning from pediatric to adult care or moving to a new area. In some situations, the change may happen unexpectedly due to insurance changes or a provider retiring, relocating, leaving a practice, or other changes within your medical team. Regardless of the reason, maintaining continuity of care is important so your new providers understand your medical history, treatment, and individual needs.

    This article focuses on how to prepare for a change in care, organize important medical information, find new providers, and maintain continuity of care with your new medical team.

    Why Continuity of Care Matters in Hydrocephalus

    Hydrocephalus care is highly individualized. Your previous provider may have been familiar with your surgical history, symptom patterns, and how your condition has presented over time.

    Without that context, a new provider may need time to:

    • Understand your baseline symptoms
    • Interpret past imaging and procedures
    • Recognize early warning signs
    • Learn what has and has not worked for you in the past

    A well-planned transition may reduce delays, confusion, and duplication of testing.

    Plan Ahead to Avoid a Gap in Care

    Finding a new provider can take time, especially when referrals, insurance approval, or the transfer of medical records is required. Whenever possible, begin the process before your current provider leaves or before you move or age out of pediatric care.

    Before your care changes, confirm:

    • Whether the new provider is accepting patients with hydrocephalus
    • Whether the provider treats people in your age group
    • Whether the provider accepts your insurance
    • Whether a referral or prior authorization is required
    • When your first appointment will take place
    • Who will provide care until you establish care with the new provider
    • Who will handle medication refills, forms, and routine questions during the transition
    • Who to contact if urgent symptoms develop
    • Which hospital you should visit for a hydrocephalus-related emergency

    If possible, schedule your first appointment with the new provider before ending care with your current medical team.

    Start with a Clear Medical Summary

    Before your first visit with a new doctor, prepare a complete medical summary that gives your new provider a clear picture of your history. Having this information readily available allows medical providers to understand your care and respond efficiently, especially in urgent situations.

    In your medical summary, you may want to include:

    • Type and cause of hydrocephalus
    • Shunt or endoscopic third ventriculostomy (ETV) history, including revisions
    • Type of shunt system, such as ventriculoperitoneal (VP), ventriculoatrial (VA), ventriculopleural (VPL), or lumboperitoneal (LP)
    • Shunt manufacturer and valve model
    • Valve type, including whether it is programmable or fixed
    • Current valve setting, if applicable
    • Additional shunt components, such as an anti-siphon or gravitational device, if applicable
    • Names and contact information for previous neurosurgeons and hospitals
    • Baseline symptoms and changes that may indicate a problem
    • Symptoms experienced during previous treatment failures
    • Medications and allergies
    • Relevant medical conditions
    • Past complications and treatment patterns
    • Emergency contact information
    • Preferred pharmacy

    Download the Medical History and Medication List to organize and share your information with your care team.

    The Hydrocephalus Association (HA), in collaboration with its Medical Advisory Board and members of the American Society of Pediatric Neurosurgeons (ASPN), developed the Toolkit for Transitioning Medical Care. The toolkit provides additional guidance on preparing for new providers, transferring your care, and navigating this next stage.

    Download the Toolkit for Transitioning Medical Care to get started.

    If Your Doctor Is Leaving or Retiring

    Learning that your doctor is retiring or leaving a practice can feel unsettling, especially if you’ve worked with them for many years.

    Before they leave, try to ask:

    • Who do they recommend for your ongoing care?
    • Will your records transfer automatically, or do you need to request them?
    • Are there any immediate follow-up needs to address before they leave?
    • How long will the practice retain your records?
    • Who will provide care until you are established with the new provider?
    • Who will handle medication refills or routine questions during the transition?
    • Who should you contact if urgent symptoms develop?
    • Which neurosurgery team is covering the provider’s patients?
    • Which hospital should you visit in an emergency?

    If possible, request copies of:

    • Recent clinic notes
    • Operative reports
    • Hospital discharge summaries
    • Actual MRI or CT images, if possible
    • Baseline imaging obtained when treatment was working
    • Device information, including shunt type and settings

    Some of this information may be available through your patient portal. However, records do not always transfer automatically between healthcare systems. Request your own digital or paper copies and confirm that the new provider has received the records and imaging before your first appointment.

    Planning ahead can make an unexpected transition easier.

    Switching hydrocephalus doctorsHow to Choose the Right Hydrocephalus Provider

    Finding the right provider is one of the most important parts of your transition.

    Look for providers who:

    • Have experience treating hydrocephalus
    • Treat people in your age group
    • Understand long-term management, not only acute care
    • Are familiar with shunts, ETV, ETV/CPC, and potential complications
    • Communicate clearly and involve you in decisions
    • Have a plan for urgent and after-hours concerns

    You may need to build a team that includes the following specialists:

    • Neurosurgeon
    • Neurologist
    • Primary care provider
    • Additional specialists based on your needs

    Your current provider, hospital system, or HA resources, such as the Physicians’ Directory, can help guide your search.

    For more information about identifying and building your care team, see Your Healthcare Team.

    How to Prepare for Your First Appointment

    Your first visit with a new doctor is an opportunity to establish a strong foundation.

    Bring:

    • Your medical summary
    • Imaging and imaging reports, if available
    • A current medication and allergy list
    • Insurance information
    • Contact information for previous providers
    • Your shunt, ETV, or ETV/CPC treatment information
    • A list of your questions and priorities
    • A trusted support person, if desired

    Be ready to share:

    • Your usual baseline symptoms
    • What symptoms may signal a problem
    • How symptoms presented during previous complications
    • Your past experiences with treatment
    • What has and has not worked for you
    • Any concerns or goals for your care
    • Your preferred method of communication
    • Any accessibility, cognitive, or decision-making support you need

    This information can help your new provider understand your medical history, symptom patterns, and individual care needs more quickly.

    Questions to Ask Your New Doctor

    Asking questions can help you understand your provider’s approach and determine whether it aligns with your medical needs.

    Consider asking:

    • How many people with hydrocephalus do you treat?
    • Who should I contact with routine questions?
    • Who should I contact if symptoms develop after hours?
    • How often do you recommend follow-up visits?
    • What imaging or monitoring do you recommend?
    • How will you access and use my previous imaging?
    • Which symptoms should prompt an urgent call or emergency evaluation?
    • How will you coordinate with my primary care provider and other specialists?
    • What should I do if I have concerns about my treatment plan?

    HA has developed question guides for different stages of life:

    Use these as a starting point and add your own priorities.

    When the Patient Turns 18

    When a young person becomes a legal adult, parents or caregivers may no longer automatically have access to medical information or participate in healthcare decisions.

    Ask the healthcare team what may be needed, including:

    • Consent forms allowing information to be shared
    • Patient portal permissions
    • A healthcare proxy or durable power of attorney for healthcare
    • Supported decision-making arrangements
    • Updated emergency contact information

    Requirements vary by state and individual circumstances. Begin discussing these changes before the patient turns 18 so the appropriate support can remain in place.

    If you’re preparing to transition from pediatric to adult care, these resources provide additional guidance and support:

    What to Expect When Care Approaches Differ

    Every provider may approach monitoring and treatment differently. You may encounter:

    • A different follow-up schedule
    • Different imaging preferences
    • Different treatment recommendations

    If an approach differs from your previous care, ask the provider to explain:

    • Why the change is being recommended
    • What benefits and risks should be considered
    • How your previous imaging and treatment history informed the recommendation
    • What symptoms or changes should prompt follow-up
    • How the effectiveness of the new plan will be evaluated

    Share what has and has not worked for you in the past. The goal is to develop a plan that is medically appropriate, clearly understood, and responsive to your individual needs.

    Prepare for Hydrocephalus-Related Emergencies

    During a transition, make sure you know where to seek care if symptoms of a possible shunt malfunction, infection, ETV closure, or another complication develop.

    Your emergency plan should include:

    • Your usual symptoms and baseline
    • Symptoms that may indicate a treatment complication
    • Your current hydrocephalus treatment information
    • Contact information for your current and new providers
    • The after-hours or on-call neurosurgery number
    • The hospital you should visit
    • A current medication and allergy list
    • A backup copy of important information in case your phone is unavailable

    If you move to a new area, identify a hospital with neurosurgical capabilities before an emergency occurs.

    Learn more about developing an emergency plan for hydrocephalus complications.

    Stay Organized and Track Your Health

    Keeping your information updated makes transitions easier now and in the future.

    Consider:

    • Keeping digital or paper copies of records and imaging
    • Confirming that new providers have received your records
    • Updating your medical summary regularly
    • Tracking symptoms and changes over time
    • Recording changes to your treatment or programmable valve settings
    • Keeping provider and emergency contact information current

    HydroAssist®, the Hydrocephalus Association’s free mobile app, can help you store your hydrocephalus treatment history, imaging, medical documents, symptoms, and healthcare contacts in one place. You can also export and share information with your care team when needed.

    Learn more about HydroAssist®.

    Moving Forward With Confidence

    Switching doctors can feel like starting from scratch, but you are bringing years of experience and knowledge about your condition.

    A change in care can be an opportunity to:

    • Build a care team that fits your current needs
    • Strengthen communication with your providers
    • Take a more active role in your healthcare

    With the right preparation, information, and resources, you can move forward with greater confidence and continuity in your care.

    Information you can trust! This article was produced by the Hydrocephalus Association, copyright 2026. 

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