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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 been...relatively unknown....

Managing Your Medical Condition

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.

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.

Knowing your medical history

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 state-of-the-art.

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 leave.

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 copies.

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.

Obtaining past records

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 medical records.
  • You have the right to review your medical records at a hospital or doctor's office.
  • 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 record.

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 could.

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.

Organizing records

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 performed.
  • Diagnosis/treatment. A brief description of the diagnosis and/or treatment.
  • 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.

Lifestyle choices

Living with hydrocephalus, for some, requires minor lifestyle changes. You should check with your neurosurgeon about particular circumstances for your case.

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 performance.
  • 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 no problems.
  • 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 bracelet.

Pregnancy and hydrocephalus

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:

Nancy Bradley
8403 Boyne Street
Downey, CA 90242
Phone: (562) 869-3689

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