Hydrocephalus Owner’s Manual


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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.


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5 thoughts on “Hydrocephalus Owner’s Manual

  1. I have lost my daughter (only child), 26 years ago, due to a frontal collision car accident. She died of brain swelling, 3 days after the accident. There was no neurosurgeon at the small town hospital where she had been taken to. The weather did not allow a helicopter to fly to Munich (where there would have been neurosurgeons). And I wonder if medical science would have been advanced enough, 26 years ago, to save her in a state that she would have wanted to live.

    Since you have lost a son, I don’t have to tell you what it means to lose a child.

    • I’m so sorry you are a member to the club. I’m sure the docs did all they could to save your daughter. It’s just that there are so many intangibles involved. It’s not quite luck of the draw perhaps, but sometimes I feel like that. Nothing ever just happens, there’s a long chain of events that lead to any accident or major occurrence—with just one break in the chain, all our lives would be different.
      I am fond of this quote from this quote:

      “We choose our truths the way we choose our gods, single-sightedly, single-mindedly, no other way to feel or see or think. We lock ourselves into our ways, and click all the truths to one.

      We put our truths together in pieces, but you use nails and I use glue. You mend with staples. I mend with screws. You stitch what I would bandage.

      Your truth may not look like mine, but that is not what matters. What matters is this: You can look at a scar and see hurt, or you can look at a scar and see healing. Try to understand.”

      –From A Gracious Plenty, by Sheri Reynolds

      God bless.

  2. I have spina bifida and Hydrocephalus I have a vp shunt. I was born 44 years ago. I have chairi type 2 a tetherd spinal cord. I have a son 15 years old. I was sent to one of the best hospitals in England. When I was born my hospital did know what was wrong with me so I was sent to another hospital were they diagnosed me straight away. at 19 I was to royal London hospital. My neurologist there was amazing I have been very lucky to have the best care. If it wasn’t like brain surgeons like you I wouldn’t be here to write this to you and read your story.

  3. My story is similar and on tge same time doferent,i was diagnose with hidocephalus at 6 month old,pas 5 revicions and one operation to add another derivation to the shunt because of the dosturbence on grouth hormone production,due to pressure of a siubarachnoideal cyst on the sella turcica and pressuring the hipofisis .these one steel exist.
    Mi life is regular and normal exept for one think that start influecing on my adult life.
    I have problems on memorising and that is why during work ,untill i lern it ,my “production “is less than others.this is utje “excuse”of emploiese why the fired me.
    What can i do to change-if is posible-my situation?

    Best regards
    Thank you in advance
    Dario Igal Wieder

  4. as a chiarian, your problem is life means PAIN!….and headaches are so variable.
    i’d be cautious to VERY bad pain days, ad have self admitted to hospital when my agreed levels of opiates aren’t going to be enough…
    BUT there are so many days when pains are “different”…a bit “heavy”…. i know enough to check for a bit of “squeezeroom” in the nozzle
    but what ELSE would signal an alert?
    in a world of permanent pain and neurodeficits….

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