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Make sure...people...around you know about your hydrocephalus.


[T]he surgical shunt card [is a] wallet-sized card...customized with six views of your CT or MRI scan on one side and...information about your medical history on the reverse.


A Durable Power of Attorney...transfer[s] medical decision-making authority from yourself to a person you designate....

Preparing for Emergencies


The following excerpt is taken from Chapter 11 of Hydrocephalus: A Guide for Patients, Families, and Friends by Chuck Toporek & Kellie Robinson, copyright 1999 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Think about all of the times that you or your child are alone during the day or with people who may not know about your condition. If your shunt were to malfunction, or if your child were to have a seizure when he was with friends, would they know what to do? This section contains tips on how to help others help you in case of an emergency.

Family and friends

Make sure as many people as possible around you know about your hydrocephalus. If you're uncomfortable discussing your condition, inform those closest to you and most likely to be present should an emergency arise. It's not important to tell others all the details about every operation or revision, but do give them enough information so they are aware of possible shunt complications.

Since our son plays with most of the local kids, we invited all of the parents over to our house to let them know about Max's hydrocephalus. We told them to bring their kids so they could all play together outside, while inside we told the parents about Max's condition and educated them on what to look for in case of a shunt problem. Afterward, we had a question-and-answer session to help calm some of the concerns that some of the parents had.

By keeping everyone around you up to date on how you or your child is doing, you enable them to help in case of an emergency. It also helps to build a valuable support system around you.

MedicAlert®

MedicAlert offers bracelets and necklaces that you can wear to inform emergency medical services personnel and others about your medical condition in case of an emergency. Founded by a physician whose daughter nearly died from an allergic reaction, MedicAlert is a nonprofit membership organization. It has been endorsed by leading medical and health organizations nationwide. There are nearly 2.3 million individuals who are members of the MedicAlert network, and more than 80,000 people have credited MedicAlert with saving their lives.

The initial membership fee for MedicAlert is a minimum of $35 and can go as high as $115, depending on the style and size of the bracelet or necklace you order. After that, the annual renewal fee is only $15. Your fee provides one-year membership, including:

  • Setting up and maintaining your computerized medical file with personal ID number.
  • Membership card to carry in your wallet or purse.
  • Custom engraved emblem with chain (you have a choice of the type of metal and size).
  • 24-hour Emergency Response Center (ERC), which is staffed around the clock to receive calls from people with information from your bracelet in case of an emergency.
  • Unlimited free record updates.
  • Member publications.

MedicAlert is more than just a bracelet or necklace. When you become a MedicAlert member, vital information about you is maintained in a central database to help provide EMS personnel information that could save your life in an emergency. Information that is kept on file includes:

  • Your name, date of birth, address, and phone number.
  • Emergency contacts, including names and phone numbers.
  • Your doctor's name, address, and phone number. You can list up to two doctors in your record; the recommended option would be to list your primary care physician and your neurosurgeon.
  • Information about your health coverage, including the name of the plan, policy number, subscriber number, and a phone number to contact for approval of emergency procedures.
  • A list of medications and the dosages you are taking.

You can update the information at any time by calling MedicAlert's toll-free number. Your $15 annual renewal fee helps pay for maintaining your record in the MedicAlert database.

The following information is engraved on one side of the MedicAlert bracelet:

  • The member identification number.
  • Phone number for MedicAlert's ERC, with directions to call collect.
  • Essential emergency medical information about your condition. The amount of information that can be engraved depends on the size of the bracelet. The small bracelet holds up to 60 spaces, while the large bracelet holds up to 90 spaces (not including the emergency phone number or your member identification number). The engraving on the Medic-Alert bracelets is guaranteed for five years. The engraving on the reverse of a MedicAlert bracelet might read:

    HYDROCEPHALUS
    VP SHUNT
    ASTHMA
    DIABETES INSIPIDUS
    123456789

    The series of numbers on the last line is your identification number.

An example of how MedicAlert works follows. Your son is in an accident while playing with friends and he is knocked unconscious, and a bystander calls 911. When EMS personnel arrive, one thing they will look for while examining him is any sign of emergency medical identification. When the MedicAlert bracelet is found, the EMT or paramedic will call the dispatcher and give her the identification number found on the bracelet. She, in turn, will call MedicAlert's Emergency Response Center, which can then relay information back to the EMS personnel that may be vital to your child's survival. Additionally, the EMS dispatcher will be given the emergency phone numbers you have provided, and will contact you and your child's doctors.

The fees you pay for MedicAlert can be deducted from your taxes as a medical expense. Applications for MedicAlert can be found at most pharmacies and drug stores. For additional information, or to order a MedicAlert bracelet or necklace, contact:

MedicAlert
2323 Colorado Avenue
Turlock, CA 95382
Phone: (800) 432-5378
Fax: (209) 669-2450
http://www.medicalert/org/index.html

Wallet-sized CTs and MRIs

Shunt malfunctions can happen anytime, anywhere. Another way to protect yourself and inform medical personnel about your condition is to carry around copies of your latest CT or MRI with you. The only problem is that the films are big and bulky. One company, BelMed, has come up with a solution to this problem by creating the surgical shunt card.

This wallet-sized card is customized with six views of your CT or MRI scan on one side and critical information about your medical history on the reverse. The images on the card enable medical personnel to know what your ventricles should look like when your shunt is functioning properly.

When you apply for a surgical shunt card, your neurosurgeon selects six images from your latest CT or MRI scan and sends them with an order form. Information included on the opposite side of the scans includes:

  • Patient name.
  • Type of scan (CT or MRI) and the date it was taken.
  • Type of shunt placement (e.g., ventriculoperitoneal shunt).
  • Shunt manufacturer and pressure setting of the valve (e.g., PS Medical, medium-pressure).
  • Name of the patient's neurosurgeon, address, phone number, and the hospital at which he practices.

The card is heavily laminated and is about the size of a credit card, so it fits in your wallet. The surgical shunt card costs $25 for the first card and $10 for each additional card. Once produced, the cards will be mailed to your home address, and the films will be returned to your neurosurgeon. For additional information about the surgical shunt card or to request an order form, contact:

BelMed, Inc.
6255 Barfield Road, #191
P.O. Box 888321
Atlanta, GA 30356-0321
Phone: (404) 851-1965
Fax: (404) 851-1800; or (800) 727-6137

Durable Power of Attorney

If you are unconscious, comatose, or cannot speak for yourself, do you know who will make medical decisions on your behalf? If you don't have a Durable Power of Attorney for Health Care (DPAHC) in place, the decisions about your medical care will be made by the medical professionals, and not by someone who knows what your wishes are.

What is a Durable Power of Attorney for Health Care?

A Durable Power of Attorney for Health Care is a legal document that must be signed by a competent adult. It allows you to transfer medical decision-making authority from yourself to a person you designate (known as an agent) to make those decisions for you in the event that you become incapacitated.

The person you select to be the agent of your DPAHC should be someone you know and trust, and whom you feel is capable of making decisions based on your wishes. You can also specify more than one agent, just in case the primary agent is incapacitated or unable to execute the DPAHC. This person must be 18 years of age or older.

The DPAHC guarantees that your health care choices will be carried out according to your wishes, values, and beliefs. Once signed and witnessed by either a lawyer or a notary public (a person authorized by the state to notarize legal documents such as wills and powers of attorney), the DPAHC can be executed only if you are unable to make the decisions yourself.

How is the DPAHC executed?

The DPAHC must be presented to the attending physician by your agent to serve as legal proof of her decision-making authority. A copy of the DPAHC will be placed in your medical records and will remain there until you are capable of making your own decisions, or if the DPAHC is revoked. The DPAHC can be revoked only by you, regardless of your mental state, and can be done so orally or in writing to your agent and your health care provider.

Before signing a DPAHC, you should understand that the person you choose to be your agent in the DPAHC will have control over the health care you receive while incapacitated. This means that she can dictate the type of treatment, service, or procedure to maintain, diagnose, or treat your physical or mental condition. Things she cannot consent to include:

  • Admitting you for inpatient mental health services.
  • Convulsive treatment.
  • Psychosurgery.
  • Abortion.

The DPAHC is a legal document, requiring your doctor to comply with the instructions or requests of your agent. If he disagrees with the terms or fails to comply with your DPAHC, he must transfer your care to another physician.

Sample Durable Power of Attorney for Health Care

Click here for a sample Durable Power of Attorney for Health Care, which is reprinted with permission from the web site of the Texas Medical Association.


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