After I explained to [my neurosurgeon] that my husband and I wanted to piece
together my medical history so we could learn more about my condition, his
attitude changed and he said he'd help out any way he could.
How hydrocephalus [is] affected during pregnancy and labor has
Managing Your Medical Condition
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.
Managing your medical condition means many things. You need to know all of your
medical history--the types of surgeries you've had and when, what medications
you're on, and what reactions you've had to them. There's a lot to know, and in
many ways, keeping track of your medical history is just as much work as going
through all of the exams, tests, and operations. Additionally, you need to be
able to make wise, informed lifestyle choices and manage the relationships you
have with your doctors to ensure you receive the best care possible.
A thorough knowledge of your medical history is essential for assertive
patients. You will need this knowledge to educate all of your doctors on the
particulars of your medical past, as well as to ensure that your current care is
If possible, try to obtain copies of all your medical records. When you see a
new doctor or specialist, bring your copies with you. The new doctor can make
copies for herself and familiarize herself with your medical history. Having
this information available is especially helpful if you relocate. Allow doctors
to copy your records, but make sure that you have them all back when you
We keep copies of all of Evan's medical records, and have
numbered each page with a sticker in the lower right corner. This way, we know
before we go to the doctors how many pages we are taking with us as a way of
ensuring that we get all of them back if they need to make any
Additionally, ask your doctors to send copies of any correspondence or
reports to your home address so you can keep your own records up to date.
Medical records are the property of the hospital or the doctor, not yours.
However, most states have laws that permit you the right to review, copy, and
request amendments to your medical records. One way you can learn more about
your state law is to contact your state legislator's office and ask them to
provide the medical record access law for your state.
When we take Lee to see any of her specialists, we let them know
that we want to receive copies of all correspondence and of entries made to her
medical record. This way, we are aware of what's going on and what's being
discussed between the various doctors. Knowing what's going on behind the scenes
is very important--and often enlightening.
Provisions that your state law might contain are:
- You will need to submit a written request to review all or part of your
- You have the right to review your medical records at a hospital or doctor's
- The review may be supervised to ensure the contents of the records are kept
intact. Keep in mind that the staff person who supervises your review of the
records should not be considered qualified to answer questions about the
contents of your records.
- If you have a question regarding an entry in your medical records, you have
the right to ask the doctor about it when he is available.
- During the review, you can usually indicate which copies of the records you
would like to receive. The law also might specify that your doctor doesn't have
to provide you with copies of your records on the spot. It might specify a
timeframe (for example, 30 days) in which your doctor can provide you with the
copies you've requested.
- A fee schedule for copies might also be specified in the law, including a
search fee to locate your chart, and a maximum fee for each page copied.
- Patients who either cannot, do not want, or are unable to conduct a personal
review can usually specify what copies they want (i.e., surgical, pathology, and
imaging reports; discharge summaries, etc.) or request the complete medical
Don't be too surprised if you encounter varied responses from your doctors
when you request to read or receive a copy your chart.
When I asked my neurosurgeon for copies of my records and any
correspondence he had about me, he looked amused and said, "Now why would
you want to read through all that?" After I explained to him that my
husband and I wanted to piece together my medical history so we could learn more
about my condition, his attitude changed and he said he'd help out any way he
If you run into problems obtaining copies of your records, it sometimes helps
to phone or write the medical records administrator of the hospital or medical
group and ask for help. In addition, copies of medical records are usually
provided directly to a new health care provider without fee upon receipt of a
written authorization. If you are having trouble getting access to your records,
you might authorize another doctor or even your dentist to receive the records
and turn them over to you for your review.
Once you have copies of your medical records, take the time to read through
them and organize them in chronological order. Place the records and reports in
a file folder with the most recent material on top. That way, if you need to
refer to a recent test or exam, it is right on top. This also makes it easy to
refer back to when going over medical bills and insurance claims.
One thing that we have done is to compile a summary of my wife's
medical history, as it pertains to her hydrocephalus. The hardest part for us
was going back into the 1970s to obtain copies of her medical records, some of
which were destroyed. However, we were able to piece together the original cause
of her hydrocephalus (an astrocytoma), and have compiled a two-page summary
sheet, which is organized from the past to the present.
Recommended information to include in a medical summary:
- Dates. These include admission and discharge dates from the hospital,
tests, and when imaging studies were done.
- Description. A brief description of what happened on a particular
date; whether it was an operation, imaging study, or change in medications.
- Attending physician. Include the name, address, and phone number of
the attending physician for that particular event (if known).
- Place of service. Where the operation or imaging study was
- Diagnosis/treatment. A brief description of the diagnosis and/or
- Medications. List all the medications you are taking, as well as any
to which you are allergic.
By compiling this information and keeping it all in one place, you will be
able to provide this summary to new doctors and specialists at the first
appointment. This summary helps them by giving a quick overview of your medical
history. If physicians need to find out additional information, they can always
refer to the copies of the medical records you have provided.
Living with hydrocephalus, for some, requires minor lifestyle changes. You
should check with your neurosurgeon about particular circumstances for your
Growing up with hydrocephalus, I led a very active life. I was in
school, I rode with the Westernaires, a high-speed, mounted drill riding
organization, and I was in the school play.
Some neurosurgeons recommend that their patients:
- Avoid impact to the head. Some neurosurgeons recommend that their patients
avoid contact sports altogether, such as American football or rugby. If you play
soccer, you will want to avoid "heading" the ball. And you'll want to
wear protective headgear for biking, in-line skating, and other sports.
- Fly only on airplanes with pressurized cabins. Changes in outside pressure
could affect ICP. Commercial flights have pressurized cabins, and loss of air
pressure is rare. Flying in private, unpressurized planes should be avoided.
Avoid sudden or prolonged increases in gravitational forces or flying that
includes going upside down, such as during stunt flying or testing aircraft
- Avoid all scuba diving. People with hydrocephalus are extremely sensitive to
changes in ICP. As scuba divers descend, pressure on the body increases.
Swimming closer to the surface (e.g., snorkeling or swimming underwater) poses
- Avoid other health-compromising behavior such as smoking, drinking alcohol
to excess, taking drugs, or engaging in risky behavior.
I lived life like the normal college student, sleeping little,
partying with friends, not eating the healthiest of meals, and drinking alcohol.
The headaches/hangovers I had as a result of drinking alcohol definitely
exceeded my friends', especially for the amount of alcohol I consumed--I did not
drink that much.
What I think should be the biggest concern for an individual with a shunt
partying with his/her college buddies is not the direct effect that the alcohol
has on the CSF and the brain, but rather, the actions that an alcohol-impaired
person may take. That person's judgment is impaired, and his decision-making
process is not at its best. This should always be a part of a shunted
individual's decision-making process.
As at other levels of schooling, it is important that an individual's college
classmates and teachers are aware of the condition just in case of an emergency.
In my situation, my shunt malfunctioned in college and it was my roommates who
brought me to the hospital, where I met my parents and neurosurgeon. I wouldn't
want to think of the potential outcome if my roommates did not know of my
hydrocephalus and shunt. It is because of this kind of situation that I am a
strong supporter of wearing a MedicAlert necklace or
Modern treatment for hydrocephalus has been around only since John Holter
invented the flow-control valve in 1957. As such, many women who have received
shunts since the 1960s are part of the first generation of childbearing age. How
hydrocephalus and shunts are affected during pregnancy and labor has been a
relatively unknown factor, untracked by most neurosurgeons.
To help track the effects of pregnancy on women with hydrocephalus, Nancy
Bradley has created the Maternal Hydrocephalus Study. Nancy is a mother of two
and has been shunted for hydrocephalus since birth. The study, which began in
May 1994, collected data from 37 women from the United States, Canada, and the
United Kingdom, who had a total of 77 pregnancies. The results of her study were
published in the September 1998 issue of the journal Neurosurgery.
For additional information on the Maternal Hydrocephalus Study, or to
participate in the continuing study, contact:
8403 Boyne Street
Downey, CA 90242
Phone: (562) 869-3689