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[N]eurosurgeons are often considered the best of the best--the "top guns" of surgical specialists.

The best time to look for a neurosurgeon is when you can do so at your leisure.

If immediate surgery is required, you could still request a second opinion….

[P]rior to going on vacation…obtain a wallet-sized card of your most recent scan.

When You Need a Neurosurgeon

The following excerpt is taken from Chapter 3 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.

Neurosurgeons are doctors who are trained to operate on the brain, spinal cord, and other nervous structures of the body, making neurosurgery one of the most complex and challenging of medical specialties. As such, neurosurgeons are often considered the best of the best--the "top guns" of surgical specialists.

One of your most difficult decisions will be to choose the right neurosurgeon. You will want the neurosurgeon to have top-notch training, to be knowledgeable about hydrocephalus, and most importantly, to be an excellent communicator.

When you need a neurosurgeon

Upon first identifying the presence of hydrocephalus, your family physician or neurologist will refer you to a local neurosurgeon to examine and evaluate your condition, and then talk with you about surgical solutions.

The best time to look for a neurosurgeon is when you can do so at your leisure. If you have the time, you can check credentials and, most importantly, meet and talk with candidates. However, you sometimes won't have the luxury of getting to know a neurosurgeon before he needs to perform a shunt placement or revision. You will need to trust the referring doctor, the neurosurgeon who was recommended, your own judgment, and your instincts.

The following scenarios illustrate circumstances under which you might find yourself in need of a neurosurgeon for treatment of hydrocephalus.

Scenario 1: Newly diagnosed patient

You visit your family physician because in recent weeks your child has been walking oddly, her personality has changed, and she's started to fall down for no apparent reason. Recognizing these symptoms as possible signs of a neurological problem, your doctor asks you to take your daughter to a neurologist for an electroencephalogram (EEG). Your doctor also schedules your daughter for a head computed tomography (CT) series, just in case it's necessary.

The EEG comes back inconclusive, but the CT series indicates that your daughter's ventricles are enlarged--a symptom of hydrocephalus. The neurologist explains the condition to you briefly and says he is going to refer your daughter to see a pediatric neurosurgeon to talk about surgical options.

When you visit the neurosurgeon, she informs you that your daughter will need to have a ventriculoperitoneal shunt placed as soon as possible. After talking with the neurosurgeon at length about hydrocephalus, shunts and possible complications, you need to make a decision on whether to go ahead with the surgery. The neurosurgeon offers you the option of getting a second opinion for your daughter, and even offers to call another neurosurgeon in the area for you to take her to that day or the next.

Realizing that there is some time to work with, you opt to take your daughter for a second opinion. After looking at the CT scans and performing a brief exam, the second neurosurgeon confirms the initial diagnosis. This neurosurgeon recommends that your daughter be shunted as soon as possible to treat her hydrocephalus. He says he would happy to perform the operation, but also reassures you of the first neurosurgeon's reputation as a skilled surgeon.

Since it is apparent that your daughter needs to be treated fairly soon, you choose which neurosurgeon you want her to have, and then call to schedule the operation.

Scenario 2: Receiving emergency treatment

You are on a three-week vacation with your wife traveling across the United States and Canada. Near the end of your first week, you start to experience headaches and feel nauseated, especially in the mornings. Since you are away from your home, you brush the symptoms aside and consider them due to being on the road, not eating properly, and not being used to the time difference. However, these symptoms begin to worsen over the next 48 hours, and you find yourself bedridden.

Concerned, your wife convinces you to go to the local hospital to be examined for food poisoning. During the initial screening in emergency, you reveal to the attending physician that you have a ventriculoatrial (VA) shunt and hydrocephalus. Soon after, you find yourself in the chamber of a CT scanner. Thirty minutes later, the attending physician approaches with another doctor. He introduces the second doctor as a neurosurgeon, who explains to you that the symptoms are probably associated with either an obstructed or infected shunt.

At this point, you are more than a thousand miles away from home, have a shunt problem, and know absolutely nothing about the neurosurgeon who is attending you. You inform the neurosurgeon that you're on vacation and ask what the options are: can you return home for surgery, or is it of immediate concern? The neurosurgeon says that although you could make it home in time to have a shunt revision performed without any problems, there is also a chance that your condition could worsen. Your wife wants you to have the revision done, but you have your doubts.

Scenario 3: Finding a new neurosurgeon

Your son has had hydrocephalus since the age of five, and you've recently relocated to a new town. Once you have found a family doctor, you ask him if he could recommend a local neurosurgeon to manage your son's case. Your family doctor schedules you and your son for a consultation visit with a neurosurgeon the following week.

After waiting an extra thirty minutes in the waiting room, you and your son are finally taken back to an examination room where you spend another twenty minutes waiting for the neurosurgeon. When he does arrive, he seems short with you and isn't particularly nice with your son either.

You ask him if there is a problem, but he offers no explanation and continues to flip through your son's medical records. When he does speak to you, you feel as if you are being talked down to.

Lessons learned

The first scenario illustrates an example of a great working relationship between a doctor and a patient's family. Here, your family physician realizes there is a problem and takes the necessary steps to ensure that your child is diagnosed and treated properly. When hydrocephalus is detected with the CT scan, your daughter is referred to a pediatric neurosurgeon who then reviews the condition, discusses surgical options, and offers you an opportunity to have a second opinion. All of the doctors involved worked together with you to ensure prompt and proper treatment.

In the second scenario, you are diagnosed as having a probable shunt obstruction or infection while many miles from home. You are faced with making the difficult decision of whether to have the surgery in a foreign environment or fly home for the operation where you are familiar with the neurosurgeon and medical staff. In this instance, you should have the attending neurosurgeon consult with your neurosurgeon back home. Medical records can be faxed and, if necessary, previous CT or MRI films can be sent via Federal Express overnight. If immediate surgery is required, you could still request a second opinion or, knowing that this surgeon has consulted with your neurosurgeon at home, could forego the second opinion and have the operation. One thing that would have benefited you would have been if you could have obtained a copy of a baseline CT scan from your neurosurgeon prior to going on vacation, or you could obtain a wallet-sized card of your most recent scan.

With the final scenario, you meet a neurosurgeon to handle your son's care, but find that he is a poor communicator. In this case, you should call the family physician back and explain to her what happened when you went to see the neurosurgeon. Don't worry, it isn't like you are tattling on the neurosurgeon. You are simply relaying the situation to the family physician. At this point, your doctor can do one of two things. She can act as a mediator and help in identifying any problems, or she can simply refer you to a different neurosurgeon. If you are a member of a hydrocephalus support group, you could contact a few of the members, find out who their children's neurosurgeons are, and relay those names to your doctor for a possible referral. Also, the Hydrocephalus Association maintains an active directory of pediatric neurosurgeons in North America. Since time is on your side, you could contact the association and request they send the directory to your doctor on your behalf. Remember, in this scenario there is no immediate cause for medical attention, just a need to locate a new neurosurgeon for follow-up care.

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