Traveling with Hydrocephalus

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    Your Guide to Traveling with Hydrocephalus

    Traveling Soon? Whether you are flying, cruising, camping, or driving abroad or within the states, the ability to travel is important to independence, self-esteem, and lifestyle. Individuals living with hydrocephalus can go almost anywhere and do almost anything.

    If you have hydrocephalus or are traveling with someone who has hydrocephalus, adequate preparation is key and can help make the trip run smoothly. That way, you can be prepared if any emergency situation or unplanned incident occurs. We encourage patients and families to prepare two to four weeks in advance. We have compiled advice, tips, and resources to help alleviate stress before and during the trip.


    Medical Alert IDs and Medical Records

    While traveling you should have a copy of your medical records and a medical alert ID. Under emergency circumstances, time is critical, and being able to quickly identify your condition is of extreme importance. Without proper identification of a medical condition like hydrocephalus, common symptoms, such as headaches, dizziness, sleepiness, and vomiting can be misdiagnosed and appropriate care could be jeopardized or delayed. Medical IDs come in various forms and shapes to learn more about the different medical alert IDs, click here.


    Download HA’s Mobile Application, HydroAssist®.

    HydroAssist® is the first mobile app that allows you to record and store your hydrocephalus treatment history and access it when you need it from your mobile device or through your computer or laptop. Perfect for the individual living with hydrocephalus and the caregiver, alike, HydroAssist® allows you to:

    • Enter your current hydrocephalus treatments, including shunts, ETV, and ETV/CPC, and assistive devices, like an anti-siphon device (ASD).
    • Store multiple active treatments, for those patients treated with more than one shunt or with a shunt and an ETV.
    • Record changes to each individual treatment, including a setting change to your programmable shunt, a setting change to your ASD, or a surgical revision to your shunt.
    • Make treatments inactive, allowing you to maintain a history of your past treatments.
    • Store images from your MRI and/or CT scan
    • Enter information about yourself or, if you are a caregiver, about the individual with hydrocephalus in the About Me section.
    • Store medical and emergency contacts for easy communication, particularly in the case of an emergency.
    • Download the app to multiple devices allowing parents, spouse, or a caregiver to have your latest information on their mobile device in case of emergency.
    • Access your information from your desktop or mobile device, for ease of data entry.

    Whether you decide to store images of a recent computed tomography (CT) scan or magnetic resonance imaging (MRI) within HydroAssist® or bring hard copies of recent scans, it’s crucial to have baseline scans with you while you are traveling. This way any neurosurgeon can see if your current treatment method is not working properly.

    In cases of slit ventricle syndrome, you may also want to take a copy of the history and physical (H&P) report that is dictated on admission to the hospital. This would usually mention that the patient has slit ventricle syndrome and the ventricles don’t dilate when there is a malfunction. In addition, many individuals bring a copy of their last operative note, which usually shows the latest treatment method. You can ask your doctor or medical records to make a copy of your operative note and H&P.

    A document listing your medical history and medications which may include other medical conditions, allergies or surgeries, primary care doctor, other specialists, and emergency contact information is pertinent to have on hand so that medical personnel can move rapidly to treat you. Download our template.


    Find a Hospital and Neurosurgeons Nearby

    If you plan to travel out of town, it’s imperative to identify the closest hospital and one to two neurosurgeons that can treat you should an emergency arise. You can locate a neurosurgeon by searching through our Physician Directory.


    Insurance

    We encourage you to look into trip insurance to cover costs if you need to postpone your trip or become sick while traveling. First, check to see if your current insurance company has out of state coverage to cover costs for emergency room visits, doctor visits, prescription medication, preventative screenings, and a host of other factors. If you’re traveling overseas, i is important to look into your international medical insurance options. In addition, double-check that your coverage includes pre-existing conditions, your return fare, and any prepaid expenses such as hotel accommodations and transportation. Call your health insurance company to find out what kind of coverage they offer if you are out-of-state or abroad.

    Quote from the Community
    “Having a son with hydrocephalus hasn’t stopped us from traveling to Australia, Japan, Fiji, the Caribbean, Canada or the USA. We always have pre-existing condition travel insurance, research nearest hospitals with a neurosurgeon; take medical history and a CD of last healthy baseline CT scan. He now wears a medical alert wrist strap with a link to an online database containing medical history at all times.”

    Airport Security

    A statement from the Hydrocephalus Association Medical Advisory Board:
    There is no reported incident of airport security procedures causing a change in an adjustable (programmable) valve setting and it is safe to walk-through metal detectors. Generally speaking, most valves on the market need magnets around 100 gauss, right on top of the valve, to move the mechanism. It is important to keep in mind, for magnetic fields, distance matters. It is stronger when magnets are closer and weakens as they are apart (within centimeters).

    Know the Signs and Symptoms of a Complication

    It’s necessary to understand the signs and symptoms of shunt failure or the closure of an ETV. Symptoms of shunt malfunction or ETV closure vary considerably from person to person, but recurring failures tend to have similar symptoms for a particular person. Review the signs and symptoms of a shunt malfunction (shunt failure) or ETV closure and if you experience any of these while traveling it’s important to consult a physician immediately.

    A statement from the Hydrocephalus Association Medical Advisory Board:
    The air pressure in an airplane cabin is approximately the same if you were at 7,000-8,000 feet of altitude which should not pose a problem. Nonetheless, several people over the years have reported experiencing severe headaches while flying. Therefore there may be some adverse reactions regarding intracranial pressure (ICP). Some individuals also experience headaches with changes in barometric pressure. Everyone is different and symptoms may vary with each person. We recommend consulting your neurosurgeon prior to travel to create a plan of action.

    Rest when you need to

    Don’t let hydrocephalus prevent you from enjoying your trip. However, it is important that you balance adventure and rest so you do not compromise your health. Some children and adults experience over draining symptoms when they are too active. If this occurs, consider taking breaks to by lying flat for 15 to 30 minutes.

    Remember to talk with your treating healthcare professionals as you plan your trip to get any pre-travel medical advice you might need.

    Where can I find more information?

    The Hydrocephalus Association has several blogs and articles on flying, barometric pressure, and hydrocephalus. Please do not hesitate to contact our support staff directly for further information by phone: 888-598-3789 or email: info@hydroassoc.org.

    Travel and Transportation Resources

    This article contains general information about hydrocephalus, as well as personal insight from the hydrocephalus community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.