Everything You Need to Know About Safely Traveling with a Shunt

Safely traveling with a shunt can open up a world of trips for those with hydrocephalus or spina bifida and their families. We’ve gotten quite used to traveling the world with our son who as spina bifida, but hydrocephalus is not one if his barriers. As a part of the spina bifida community, I’m connected to a lot of people whose lives look different because of hydrocephalus and shunts.  This is an obstacle that frequently keeps families from traveling, so I dug into research to see if I could help. 

If you are a parent of a child with hydrocephalus, I hope the following is both helpful and freeing. 

First, know that there are no added inherent risks in flying or traveling.  While air pressure and such may cause discomfort, it’s not a heightened risk from any other child. 

Second, know that you’re not alone.  Moms have taken their hydro kids all over the world, and have great things to say about it!  They are proactive in researching the healthcare make-up of their location (resources to help you do this are at the bottom of the article!) and rarely travel to remote African villages, but they’ve gone to a lot of places you might not expect!

Here’s a quick breakdown for getting started:

• Consult with Your Neurosurgeon: They’ll know exactly what you need for travel
• Research Medical Facilities: Identify hospitals and healthcare services near your destination. This ensures help is close by if needed.
• Check Your Insurance: Make sure you’re covered for your existing conditions and have the right travel insurance policy.
• Prepare Medical Documents: Carry copies of your recent scans, prescriptions, and a medical alert ID.
• Manage Medications: Most things you forget can be found at Target – but that’s not true for many medications and medical supplies. Pack these, first.

Understanding Shunts and Travel

Traveling with a shunt doesn’t have to be a complex puzzle. Understanding the basics can make a big difference. Let’s break it down.

Hydrocephalus and Spina Bifida

Hydrocephalus is a condition where excess fluid builds up in the brain. This can increase pressure and lead to various symptoms. It’s often managed with a device called a shunt, which helps drain the fluid.

Spina bifida, on the other hand, is a birth defect where the spine doesn’t form properly. Many people with spina bifida also have hydrocephalus, making shunt management a key part of their care.

Both conditions may require extra planning when traveling, but they shouldn’t stop you from exploring the world. With the right knowledge and preparation, you can travel with confidence.

Shunt Travel Experience

The following is from an article by Debby Buffa, a Hydrocephalus Association Board Member, and shares personal experiences to support general travel advice for traveling safely with a shunt.  More information can be found through the website at https://www.hydroassoc.org/traveling-with-hydrocephalus/

I know many of you have questions about travel and flying with hydrocephalus and shunts.  I am a mom of two daughters, now in their 30s, who have had hydrocephalus and shunts since early childhood.  I managed a neurosurgery office for 18 years and have run a hydrocephalus support group since 1987.  Firstly, the best resource you have is your neurosurgeon.  Always check with your physician first as you may have certain health problems that may affect your travel plans.

My daughters have been to Jamaica, Costa Rica, England, France and throughout the States, including Hawaii.  My oldest has had many revisions; therefore, we were pretty nervous about her flying to far-away places, particularly Europe and Hawaii.  My younger daughter traveled to Costa Rica for her honeymoon and we were worried about what would happen if her shunt malfunctioned while she was there.

The first thing we did was make sure they had copies of their last operative note, this usually shows what type of shunt was placed and where.  We ordered a copy of the last CT/MRI scan.  Usually it is best to have a baseline CT which shows what the ventricles look like when the person is healthy and then have another scan from a time when the person needed a revision.  This way any neurosurgeon can see what happens when the shunt 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.  You can ask your doctor to copy your operative note and H&P for you.  For the CT/MRI you call the radiology facility where they were taken and ask them to make you a CD.

Then we needed to make a plan on where they would go if they became ill.  The HA website is a wealth of information.  You can find a directory of neurosurgeons who treat hydrocephalus and there are suggestions and articles regarding travel, flying and hydrocephalus.  It is a good idea to also check with your own neurosurgeon who may have their own suggestions as to whom you should see in an emergency.  In the States, we searched for a major university medical center which would have neurosurgeons covering the emergency room.  Neither daughter has problems with flying; one has a venticuloperitoneal shunt (VP) shunt, the other a ventriculoatrial (VA) shunt.  If you are traveling overseas, contact HA to get further information regarding available surgeons/facilities.  If you are traveling to a place you would not feel safe being treated, then find out the closest major medical center in an American city that can be flown to emergently.  Remember, this is about being proactive, as it is always better to be safe than sorry.

Each daughter carries a small card with type of shunt, neurosurgeon office & exchange number; primary physician; insurance; and emergency contacts. This information has been added to their cell phone as well.  On my older daughter’s group tour to Europe, she explained her condition to the organizer and assured them she was fine to travel and had made plans for an emergency.

There are also programs that will fly you in an emergency to an American hospital, but I am not personally familiar with these.  Make sure your insurance covers your travel in a foreign country, not all do.  You may want to purchase travel insurance just as a safety net.

https://www.hydroassoc.org/traveling-with-hydrocephalus/

Preparing for Your Trip

Getting ready for a trip when you have a shunt involves a bit more planning, but it’s all about ensuring peace of mind. Here are some practical steps to take before you hit the skies.

Medical Alert IDs

A medical alert ID is a must-have for anyone traveling with a shunt. In an emergency, it provides critical information to medical personnel about your condition. This can prevent misdiagnosis and ensure you receive the right care quickly. Medical alert IDs come in various forms, such as bracelets or necklaces, and should clearly state that you have a shunt and any other pertinent medical information.

Quick Tip: Choose a medical alert ID that is durable and easy to read, and make sure it includes emergency contact details.

Medical Records

Having your medical records on hand is another key step in preparing for travel. These documents should include your treatment history, any recent surgeries, and a list of medications. It’s also wise to carry a copy of your most recent CT or MRI scans. This information can be crucial if you need medical attention while away from home.

Pro Tip: Keep digital copies of your medical records on your smartphone or a secure cloud service for easy access.

HydroAssist®

Consider downloading the HydroAssist® app, a handy tool for managing your hydrocephalus treatment information. This app allows you to store details about your shunts, treatment history, and even images from your scans. It’s like having a portable medical file that you can access anytime, anywhere.

Features of HydroAssist®:

• Treatment Tracking: Log your current and past treatments, including shunt settings and surgical revisions.
• Image Storage: Store and access MRI and CT scan images on the go.
• Emergency Contacts: Keep an updated list of medical and emergency contacts for quick communication.

Insurance

I hear very mixed reviews on travel insurance, and if you’re traveling domestically you may not even need it. If you’re purchasing travel insurance, make sure it covers your existing condition. It’s crucial to provide accurate information about your medical history and any future appointments. This way, you’ll avoid any costly surprises if you need to make a claim.

Pro Tip: Consider purchasing travel insurance that specifically covers medical emergencies related to your shunt. Some mainstream insurers might not cover these, so you might need to look into specialist providers. Shine offers a list of such providers, which can be a great starting point.

Hospital Research

Before choosing your travel destination, research hospitals and healthcare facilities near where you’ll be staying. This is especially important if you need to be close to a neurosurgical center. For a list of
Neurosurgeons click HERE. To find doctors outside the US visit the American Association of Neurological
Surgeons.

Quick Tip: Contact the hospitals in advance to confirm they can meet your medical needs and understand their charging policies. Language barriers can be an issue, so check if they have English-speaking staff available.

Medication Management

Managing your medication is another vital part of the preparation process. Ensure you have enough medication to last your entire trip, plus a little extra just in case. Carry a copy of your prescription with you, as you might need to show it at customs or if you need a refill abroad. Domestically, it’s possible to transfer your script to a different pharmacy temporarily for a longer trip.

Packing Tips:

• Split your medication between your hand luggage and checked luggage in case one is lost.
• If you have liquid medication, place it in a 100ml bottle, clearly labeled, for airport security.

Bonus Tip: Ask your hospital for a copy of your most recent scan on a USB memory stick. This can be invaluable if you need medical care while traveling, as it provides a baseline for comparison.

Navigating Airport Security

Airports security with extra equipment and medications feels overwhelming at first, but it’s a straight forward process that you’ll get used to.

Programmable Shunts and Security

According to the Hydrocephalus Association Medical Advisory Board: It is safe for persons with adjustable shunts to walk through airport metal detectors. There are no reported incidents of airport security procedures causing a change in an adjustable (programmable) valve setting.

If you’re still nervous:

• Inform Security Staff: As soon as you reach the security checkpoint, let the staff know you have a programmable shunt. Explain that certain equipment could interfere with it.
• Show Your Shunt Alert Card: This card is your ticket to a smooth security experience. It explains your condition and any special requirements you have. Make sure it’s easily accessible in your wallet or carry-on.

Whole Body Scanners: Good news! These scanners, which use X-rays or millimeter waves, do not affect shunts. You can pass through them without any worry.

Shunt Alert Card: Your Travel Buddy

The shunt alert card is not just a piece of paper; it’s a crucial part of your travel toolkit. It provides essential information about your shunt and can help you avoid unnecessary delays or complications at security checkpoints.

Quick Tips for Your Shunt Alert Card:

• Keep It Updated: Ensure that the information on your card is current. This includes the type of shunt and any specific instructions for handling it.
• Multiple Copies: Have a digital copy on your phone and a physical copy in your wallet. This ensures you’re covered even if one goes missing.

Frequently Asked Questions about Traveling with a Shunt

Can you travel with a shunt?

Absolutely! Traveling with a shunt is possible and can be safe, but it requires some planning. Families have ventured far and wide, from Australia to the Caribbean, without letting a shunt hold them back.

Key Tips for Traveling:

• Carry Important Documents: Always have your medical history, a recent CT/MRI scan, and a shunt alert card with you. These can be lifesavers in an emergency.
• Plan Ahead: Research hospitals and neurosurgeons near your destination. Knowing where to go in case of a shunt malfunction can give you peace of mind.

Is flying safe with a shunt?

Yes, flying is safe for people with shunts. However, there are a few considerations to keep in mind:

• Pressure Changes: Although air pressure changes during flights can cause discomfort, they typically don’t pose a risk to shunt function.
• Emergency Plans: Before flying, ensure you have a plan for emergencies, including knowing the nearest hospitals at your destination. Consider travel insurance that covers pre-existing conditions.

Conclusion

Flying with a shunt doesn’t have to be overwhelming. Like any type of traveling with a disability, it requires a little extra planning and flexibility, but it is always worth it! Whether you’re exploring local parks or planning a trip abroad, each journey is a chance to learn and grow together. Find your community, utilize your resources, and explore the world with confidence!

Explore with Wonders Within Reach

If you’re looking for wheelchair accessible destinations or itineraries, check out Wonders Within Reach. We share as we learn on this wild spina bifida journey!

Useful links and resources:

• Visit Hydrocephalus Resource Library for more articles on flying and hydrocephalus
  (type keywords flying, barometric pressure, magnetic fields)
• For medical alerts
  visit: MedicAlert
• Make sure you’re a part of the spina bifida facebook group.