Transitioning to College: Healthcare Management

For many young adults living with hydrocephalus, college is the first time they are managing their medical condition(s) on their own, particularly if the individual has moved away from home to live on campus. Preparation and knowing and listening to your body are both key elements to successfully managing your healthcare and navigating any emergencies.

Transfer of Care

If the student decides to attend college away from home, they must also put into place a plan for local care in the event of a medical emergency. The first step is to ask their current neurosurgeon to recommend another neurosurgeon or practice near the college. Visit our Physicians Directory to find a list of specialists nearby that you can share with your current neurosurgeon. Once the student has identified a new neurosurgeon, they can follow up with a personal visit at the beginning of the school year. If your current neurosurgeon or Advanced Practice Provider (a Physician Assistant or Advanced Practice Nurse) is willing, ask them to reach out to let the new neurosurgeon know you will be attending college in the area and that you will be requesting an appointment to meet them.

Be prepared to share the following information with your new doctor.

• Primary Cause of Hydrocephalus
• Current Primary Treatment (Shunt, ETV, ETV/CPC, No Treatment)
• Primary Shunt Type (VP (Abdomen), VA (Heart), LP (Spine), VPL (Lung))
• Shunt Make and Model
• Current Valve Setting, if Programmable
• If you have more than one valve and one proximal catheter, a description of your current configuration
• Number of Hydrocephalus-Related Surgeries (Estimate, If Necessary)
• Date of First Hydrocephalus Surgery
• Date of Most Recent Hydrocephalus Surgery
• Typical Signs and Symptoms of Failure
• Emergency Contact Information (Name, Relationship, Cell, Email)

Our HydroAssist® mobile app can help you share your current and past hydrocephalus treatment information and MRI/CT images.

(For more tips on transitioning to a new doctor—especially if you’re transitioning out of pediatric care—visit, Transitioning from Pediatric to Adult Healthcare.)

Being Prepared

Students with hydrocephalus need to be prepared. While the DSO may know about the student’s condition, it’s not their responsibility to inform roommates, Residential Advisors (RA’s), or other staff members. This responsibility falls to the student. You should consider who you need to inform about your condition(s) and how you are going to do it. A person in a role of authority and trained to manage emergencies, like and RA, should be informed. At least one close friend or your roommate should also know. Not only can they help you if an emergency arises, but they can also share with you any changes or behaviors that they are worried about that you might not be aware of. It is completely acceptable to ask them not to share your information with others.

Additionally, students should create an emergency plan and folder to house critical information, and share the location of this information with their roommates and RA. Information you may want to include:

• An emergency plan that includes:
  • A medical summary
    • Current diagnosis (list other medical conditions in addition to your hydrocephalus)
    • Current Primary Treatment (Shunt, ETV, ETV/CPC, No Treatment)
    • Primary Shunt Type (VP (Abdomen), VA (Heart), LP (Spine), VPL (Lung))
    • Shunt Make and Model
    • Current Valve Setting, if Programmable
    • If you have more than one valve and one proximal catheter, a description of your current configuration
  • Contact information of your doctors and parents/guardians
  • Preferred hospital (and driving instructions)

For a template, download our Medical History and Medication List template (link opens a new window).

• Recent MRI disc
• Complete insurance information, including a photocopy of your insurance card, both front, and back (the card itself can be carried in your wallet)
• A copy of your Durable Power of Attorney for Health Care (DPAHC)

We also encourage you to download HA’s Mobile Application, HydroAssist®, which you can use to store and manage your entire treatment history and images, as well as a symptom diary.

Student Health Center

Most colleges have a student health center. Typically, they are equipped to handle illness and non-emergency conditions. Students should contact the student health center during the college search phase and/or once they have been accepted or committed to find out:

• When the Student Health Center is open
• What kind of services are provided
• Who you can talk to if you have any complications with your hydrocephalus
• How to reach someone if you have concerns or questions
• If there is a healthcare provider at the Health Center who has experience in caring for someone with hydrocephalus
• If the Student Health Center requires or would like to have any information on file for you in case of a medical emergency

Emergency Management

Additionally, some colleges have their own emergency medical services. If the school has its own Emergency Medical Technicians (EMT) it may be necessary for the student to connect with them in order to inform them of any emergency medical information or care that the student may need. Students can ask the DSO about emergency procedures on campus. The DSO might connect the student with the emergency management team on campus, or campus safety/campus police to discuss the student’s specific needs in an emergency situation.

Leave of Absence

Should you need to consider a leave of absence from school to manage your medical and mental health needs, it is important to know about the college policies and how they impact your student status. Read our article here.

Information you can trust! This article was produced by the Hydrocephalus Association, copyright 2021, in collaboration with Annie Tulkin, MS, of Accessible College.