Preparing for Emergencies
The following excerpt is taken from Chapter
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.
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
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
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 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
- Membership card to carry in your wallet or purse.
- Custom engraved emblem with chain (you have a choice of the type of metal
- 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
- 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
- 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
The following information is engraved on one side of the MedicAlert
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
2323 Colorado Avenue
Turlock, CA 95382
Phone: (800) 432-5378
Fax: (209) 669-2450
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,
- 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
6255 Barfield Road, #191
P.O. Box 888321
Atlanta, GA 30356-0321
Phone: (404) 851-1965
Fax: (404) 851-1800; or (800) 727-6137
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.
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.
Click here for a sample Durable Power of Attorney
Health Care, which is reprinted with permission from the web
site of the Texas Medical