Hydrocephalus Owner’s Manual


Click image to download the entire Hydrocephalus Owner’s Manual as a free pdf.

Hydrocephalus: An Owner’s Manual

by Edison McDaniels II, MD


I am a brain surgeon.

Several years ago, I was confronted with a young man in the emergency room who had earlier that morning been found unconscious by his college roommates. In fact, when I met him he was essentially comatose, that is, unresponsive in any meaningful way. Fortunately, one of his roommates recalled something about him having a shunt. With this piece of information, the emergency physician quickly called for a stat head CT and a diagnosis of shunt malfunction was made. I was called, took the patient to surgery for an emergent shunt revision, and he recovered and lived happily ever after.

Well almost. It turned out he was a college student and the ordeal left him rather exhausted, though neurologically normal, and he would spend several months recovering from his near death experience. His mother, who lived in a city 160 miles away, drove over immediately and was waiting for me when I came out of the operating room. I have seldom seen a mother so grateful as that woman—unless it be virtually every other mother I have ever dealt with as a neurosurgeon.

Largely because of their children, parents are special people.

The bond between parent and child is like no other. I have seen octogenarians break down while recalling the death of a forty-year-old son or daughter—never mind that the death occurred fifteen years before. Perhaps the only bond in all of nature that can never be fully broken, it continues beyond divorce, separation, abandonment, illness, and even death. At its best, the parent-child bond drives us to be our best, to meet our full potential. Even when it is missing, entire lives are predicated, even formulated, on the basis of such a loss.

Almost without exception, the parents I meet would gladly exchange places with their child in these moments of extreme stress. These parents feel helpless and at the mercy of the situation. I am often asked What could I have done? Or Is there anything I can do to prevent this from happening again? 

I know the feeling.

I am a brain surgeon. I am also a parent. Several years ago, my oldest son died suddenly. In my years on this earth I have lost people close to me—a brother, a half-brother, both parents, several close friends—but all of their deaths paled in comparison to losing a child of my own. It was and remains the single most difficult event of my life, the defining moment if you will.

A bond which cannot be broken.

Which brings me to this monograph.

Hydrocephalus—loosely defined as a build-up of fluid in the brain—is a life-threatening, fairly common, and relatively easily treated condition. Unfortunately, with existing medical technology, the treatment requires a lifelong diligence on the part of loved ones as well as the patient himself/herself. But that being said, the treatment is not onerous on a daily basis and the benefits are dramatic. Most patients with hydrocephalus live normal lives in virtually every respect. They play sports (even extreme ones), marry, have regular jobs, carry babies through labor and delivery, and die as an old man or woman (or at least we expect they will—the technology is only fifty or so years old and thus people shunted as young children are only now reaching late middle age). With the possible exception of the more remote parts of Alaska, if you live in the United States you almost certainly have at least one friend, acquaintance, student, or co-worker with a vp shunt—though you may not know it.

So why this monograph?

Because, to put it in the simplest terms possible, failure to recognize a shunt malfunction can be fatal. The boy I took care of above had failed to get out of bed for class one morning. When his roommates returned home for lunch, they found him unresponsive and still in bed. They called an ambulance and he was taken to my hospital, where a CT of the brain showed the problem. He received prompt medical attention—but only belatedly and it nearly cost him his life.

Had his roommates known the gravity of his failure to arise that morning, his brush with death would likely have been avoided. His mother recognized this fact. She knew how close to the edge he had come. She was one of those who asked What could I have done? Is there anything I can do to prevent this from happening again?

The advice I gave her became this monograph.

Author’s note: This is not an exhaustive treatment of hydrocephalus. It’s a brief, informative, interesting, and I hope useful summation of some of the more common questions I have been asked repeatedly over the years. There are many longer, much more exhaustive books on hydrocephalus. This, however, will answer most of your questions. And it is written with the lay person in mind.



About The Author

Edison McDaniels is a writer, wordsmith, novelist, and physician living in the American midwest. His writing tends to involve ordinary people in extraordinary circumstances and is often informed by medicine. His stories showcase historical fiction and the supernatural, especially ghosts. He received honorable mention in The Seventeenth Edition of the Year’s Best Fantasy and Horror (2003), and has been published in Paradox Magazine, The Summerset Review (available online), The Armchair Aesthete, On The Premises Magazine, and others. Several of his short stories can be found online.

He is also a graduate of Stanford University and is a neurosurgeon. He is board certified in the practice of adult and pediatric neurosurgery, with over 6,000 operations to his credit.

He and his wife collect historical etchings and attend at least 1-2 baseball games a week between April and October, more if the Minnesota Twins are in town.

His novels include NOT ONE AMONG THEM WHOLE, THE BURDEN, and the forth coming THE MATRIARCH OF RUINS. His latest novella, BLADE MAN, is available as an eBook.



Announcing The Hydrocephalus Owner’s Manual

Soon available for the Kindle.
It just might be the most important book you read. Ever.

HydroCover0What, exactly, is hydrocephalus? How is it treated? What is a vp shunt? What are the signs and symptoms of vp shunt failure and when do you need to seek help for yourself or a loved one? What are the common sense tips you can do to minimize the chance of your child having a problem when they are away from home–living in a college dorm, for instance?
If you or a loved one had hydrocephalus and could sit down with a neurosurgeon, what would you want to know?

This is a 6,000 word monograph on hydrocephalus, written by an experienced neurosurgeon FOR THE LAY PATIENT and his/her family. This is an essential guide for those who have hydrocephalus or deal with loved ones with hydrocephalus—a chronic condition in which spinal fluid builds up in the head and does not circulate property. Although the condition can be life-threatening & requires life-long observation, the treatment is generally straight forward and not onerous on a daily basis. The monograph includes information about vp shunts, as well as a mother’s companion and answers to common questions and scenarios.

You can also read it here for free, but it will be easier to read on the Kindle, and more convenient too. And this is the sort of thing you want to have available in a tough moment, when you might want to refer to it on the spot.



6/6 Hydrocephalus Owner’s Manual

Hydrocephalus: An Owner’s Manual Part 6 of 6

A Mother’s Companion



Generally, a CT is a better study to look at shunt function than is an MRI.

When evaluating shunt function in the ER, the size and shape of the ventricles on CT are of most significance. Being able to compare a CT obtained in the ER under symptomatic conditions to a past CT obtained for simple surveillance (during a period when the hydrocephalus was asymptomatic and the patient was well) can make all the difference in the world (and possibly prevent unnecessary surgery). Such a comparison will often make the diagnosis of a shunt malfunction much easier.

It is reasonable to obtain a surveillance head CT (without contrast; your doctor will know the meaning of this) every three years during childhood through the growth spurt at puberty. In adults, surveillance CT is obtained following a shunt revision but is rarely necessary otherwise. In reality, shunted patients are occasionally seen for headache in the ER and often a CT scan will be obtained at that time. These studies are often normal and reassuring to the physician and the family.

Most patients with a shunt and a headache will not have a malfunction and do not need a CT scan. This is a clinical decision.

It is worth remembering that a CT is a static image of one moment in time. It does not replace a careful history and physical examination.

A shunt series is often helpful. This is a plain set of regular xrays, including at least two views of the skull, chest, and abdomen. The purpose is to follow the shunt tubing throughout its course, looking for kinks, disconnections, or tubing out of place (such as when the abdominal catheter has pulled up out of the belly and is coiled under the skin—where it won’t work properly).


Medic Alert

Once a child starts kindergarten, a medic alert tag is recommended, ex. Obstructive hydrocephalus with VP shunt.



Carrying a digital copy of the latest surveillance CT when traveling will help in the evaluation of a person with a shunt issue. Check with your local hospital or physician as to how to obtain a copy of the CT scan on CD or flash drive.


The Special Case of Infancy

Throughout this monograph, we have assumed the skull is a closed box with a fixed volume. However, this is not the case in infancy, up to about eighteen months of age. During this time, the head is rapidly expanding with normal growth and the skull is composed of several plates of bone, which interact with each other along what are called suture lines. These sutures are very pliable and capable of separating, allowing for expansion of the skull and the underlying brain.

Therefore, the volume of the space inside the skull is not fixed in infants. The box is open.

What this means in practical terms is that hydrocephalus in infants is manifested by an enlarging head circumference, which is why your pediatrician measures the head circumference at the well baby checks.

One can also feel along the sutures, which separate and leave gaps in hydrocephalus.

The anterior fontanelle, the soft spot on the top of a baby’s head, becomes very tense or taut from the underlying pressure.

An important finding at the time the diagnosis is made, as well as in the presence of a shunt malfunction, is that of sunsetting. This occurs when pressure inside the head affects that part of the brain which controls eye movements. The eyes are forced to look down, sometimes very forcibly. This is an ominous finding and requires emergent evaluation and intervention to prevent permanent brain injury or death.

One more thing. Although infants can get pretty sick from hydrocephalus, only in the most extreme cases do they suffer acutely life-threatening problems with a shunt malfunction (because the head just expands a little more; in untreated infantile hydrocephalus, the head is capable of truly monstrous expansion). Adults, on the other hand, with a fixed amount of space, very often have acutely life-threatening issues with shunt malfunction and hydrocephalus. There is little room for compensation in adults, in whom the box is always closed.


IIIrd Ventriculostomy

In the presence of obstructive hydrocephalus (but not communicating or non-obstructive hydrocephalus, and not normal pressure hydrocephalus) there is sometimes an alternative to shunting: IIIrd ventriculostomy.

In this case the surgeon creates an artificial opening between the obstructed ventricle and the CSF space at the base of the brain. This effectively bypasses the obstruction to the flow of CSF and allows it to be reabsorbed through regular pathways.

IIIrd ventriculostomy is performed through an endoscope by a qualified neurosurgeon and is only available when the anatomy is favorable. There are potentially significant complications, but the benefit if it works is that lifelong shunting can be avoided. 


It would be beneficial to keep the following information in one place.

My Hydrocephalus Log

My neurosurgeon is:

Recommend that every adult family member keep the neurosurgeon’s card in their wallet or purse, or on their iphone. Give the card to college roommates, landlords, and place in employee health records as well.


Type of hydrocephalus:

Obstructive (non-communicating)

Non-obstructive (communicating)

Normal pressure hydrocephalus (NPH)


The original cause of my hydrocephalus:

Congenital (born with it)

Spina bifida

Aquaductal stenosis





Date of most recent shunt:






Current setting:


Date of first shunt:


Number of revisions:


Have I ever had a shunt removed because of infection:


End of the Hydrocephalus Owner’s Manual Series.

Disclaimer: The information contained in this blog is simply that, information. I am not doling out specific medical advice. Nothing contained herein is meant to replace a complete evaluation by a qualified member of the medical establishment. This page is nonfiction.


5/6 Hydrocephalus Owner’s Manual

Hydrocephalus: An Owner’s Manual Part 5 of 6

The Shunt Itself


What is a Shunt?

The shunt itself is a silastic tube about the diameter of a wet spaghetti noodle. It has two ends, proximal and distal, and one valve. There is usually a reservoir which can be needled to gain CSF as well. Often, though not always, the reservoir and the valve are located together.

The proximal end of the shunt is the head end, with the tip usually in the ventricle (one of the cavities in which CSF is produced). 

The distal end of the shunt is usually in the belly, or peritoneum. This is not truly in the stomach, but in the space around the stomach and intestines, where the catheter floats among these structures. The CSF exits the distal end of the shunt and is reabsorbed into the bloodstream, where it circulates back to the head and is reused.

The valve is the crucial and significant mechanical part of the shunt. It is placed inline between the proximal and distal tubing, usually under the skin of the skull behind the hairline. It is the ‘unsightly bump’ seen atop the head of an infant, the lump visible after the head has been shaved for a shunt revision.

The function of the valve is to provide a certain resistance to flow of CSF so that overdrainage does not occur. Without the valve, it is possible that too much CSF would drain, creating its own set of problems.

There are a number of valves from different manufactures. In general, they can be divided into programmable and nonprogrammable valves. Programmable valves can be adjusted with a magnet held over the scalp. The advantage of this: the valve setting can be adjusted without requiring an operation; nonprogrammable valves do not have this option—if the valve setting is wrong, surgery is required to replace the valve. Note that programmable valves may have to be reset after an MRI. It is at least conceivable that a programmable valve could be reset in other situations of modern life, though this is apparently rare.

All valves are subject to mechanical failure and tend to be a choke point in the shunt system. 


Risks & Benefits of Surgery

Most of the time, shunt placement is done without a hitch. However, the procedure is not without certain risks. For most individuals, the benefits far outweigh the risks.

The benefits of shunting include treating the hydrocephalus and its attendant signs and symptoms. Symptoms are what a patient complains of (headache, nausea, vomiting, double vision, blurred or decreased vision, clumsiness, etc.) and signs are what a physician discovers on examination (decreased consciousness, abnormal eye movements including sunsetting and crossed eyes, enlarging head circumference in infants, etc.). Another benefit not to be overlooked is the opportunity for an individual to reach their full potential. Even in non-life threatening cases of hydrocephalus, the hydrocephalus can cause memory disturbance and cognitive decline.

With the above said, it should be recognized there are many risks of shunting. The biggest risk is infection, perhaps as high as ten percent. This includes superficial wound infection, infection of the shunt itself, ventriculitis (an infection of the ventricles where CSF is produced), and peritonitis (infection of the belly cavity). Most cases of infection occur within thirty days of surgery, though the risk is elevated for as long as six months. Most cases of infection will require removal of the shunt, perhaps with a prolonged hospitalization.

 Other risks include intracranial hemorrhage (bleeding), stroke, and injury to the bowel. The need for revision is always out there as well, usually because of infection or obstruction, occasionally because of misplacement of the distal catheter outside of the peritoneum.

In preterm infants, there is a risk the peritoneum will not have enough absorptive capacity. For this reason, shunting is avoided in these cases.

Ventriculoperitoneal shunts can cause or enlarge inguinal hernias, much more commonly in boys. Small boys should be checked for hernia in the months following shunt placement. If possible, hernias should be repaired prior to shunting.

With a ventriculoatrial catheter, in which the distal catheter is placed in the heart, there is a potential for clotting of the end of the distal catheter. Also, if the shunt becomes infected, the infection can track directly into the blood stream—a decided disadvantage. For this reason, the usual shunt of choice today is a ventriculoperitoneal shunt.

Rarely, ventricular shunts are placed to other parts of the body, the most common being a ventriculopleural shunt. These are exceptional cases, with their own attendant risks.


Shunt Failure v. Infection

When a shunt fails, the signs and symptoms of hydrocephalus return.

The usual cause of shunt failure is either obstruction or infection.

A shunt can fail in the absence of infection. The usual cause for this is obstruction, usually the proximal end or the valve. In such a case, the surgeon will perform a revision, replacing just that part which is obstructed, if possible.

In the case of shunt infection, the shunt will usually (but not always) shows evidence of malfunction as well. Such cases can be very complicated to treat, especially if the patient is shunt dependent. Generally, these are treated with IV antibiotics in combination with revision. Usually the entire shunt system has to be pulled and replaced. If the infection is significant and the patient is shunt dependent, the entire shunt is removed and an external ventricular drain (which drains CSF to a bag at the bedside) is placed. This may be required for a week or more, during which the patient must remain hospitalized. 

If the patient is not shunt dependent (as in normal pressure hydrocephalus), the infected shunt is removed, the patient is treated with IV antibiotics, and the shunt is replaced at a later date. No external ventricular drain is necessary.

Note that essentially all children and most adults are and should be considered shunt dependent from the moment a shunt is placed. In the absence of information one way or the other, the neurosurgeon will assume shunt dependence.

open brain woodcut

Disclaimer: The information contained in this blog is simply that, information. I am not doling out specific medical advice. Nothing contained herein is meant to replace a complete evaluation by a qualified member of the medical establishment. This page is nonfiction.