Traveling with Hydrocephalus

We asked on our Facebook page: “If you are planning to travel this summer have you inquired about neurosurgeons in the area you are visiting, in case of an emergency?”

Here is what you said:

graphic for travelling with hydrocephalus pollAfter looking at the results, we had asked Debby Buffa, Hydrocephalus Association Board Member, mother of two adults with hydrocephalus and a support group leader to share her experiences, wealth of knowledge and tips to take into consideration in preparing for a trip. We include a list of resources at the end of this article.

Traveling with hydrocephalus!

By Debby Buffa, Hydrocephalus Association Board Member

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.

As parents, we will always worry about our children, regardless of whether they have hydrocephalus or not.  Being prepared is one way to ease our minds and be assured that we are doing the best we can.   The key is to let them live the life they were meant to.

Give them wings and let them fly.

Useful links and resources:

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