Hydrocephalus…It’s a Real Headache

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By Tom Smith, Adult Services & Outreach Coordinator

Recently, we posed this question on Facebook ‘What does hydrocephalus mean to you?’ We received scores of answers, all of them great, many of them poignant. One of them was: “Headaches – and I wonder when they might be a serious problem.”

Headaches have a very special place in the pantheon of difficulties facing people with hydrocephalus. Everybody gets headaches. But the headaches associated with hydrocephalus are in a class all their own and add a severely complicating factor to treatment, diagnosis and quality of life for people living with hydrocephalus.

Here at the Hydrocephalus Association, we often field questions about headaches. We have several excellent resources available on this important topic.

Fact Sheet: Headaches and Hydrocephalus
This is one of the many fact/information sheets we make available. Some of the leading lights of hydrocephalus treatment provide a wealth of information.

Conference Presentation titled: Headaches in Patients with Shunts
At the 11th National Conference on Hydrocephalus, Dr. Harold Rekate, Chief of Pediatric Neurosurgery at the Barrow Neurologic Institute in Phoenix, AZ and member of our Medical Advisory Board gave a presentation on headaches in shunted patients.

Here are two other articles by Dr. Rekate
“Headaches in People with Shunts”
“Headaches and Slit Ventricle Syndrome”

4 Comments for : Hydrocephalus…It’s a Real Headache
    • RLudlam
    • April 12, 2011

    I have headaches a few times a week that do not seem normal due to the type pressure but I am 75 years old and after several years of not knowing what was causeing the symptoms of hydrocephalus and being incorrectly diagnosed with other problems the headaches are minor. The Shunt saved my life and I am still getting better, working every day and shooting sporting clays. I got lucky and found the right doctor. Do not give up and be sure your are diagnosed correctly.

    • Beth Boberg
    • November 19, 2010

    A Mother’s Plea
    Like it? twodogsandacat@msn.com
    What is a mother to do with her two month
    old daughter; cuddle her and care for her I
    guess. My mother, her grandmother, discovered
    that she had hydrocephalus; and now my baby
    is in the operating room.
    How is a mother to react; my baby in the
    hands of doctors who are installing a shunt
    to drain excess fluid. It’s like lightning
    striking my heart. I can feel her pain as I
    can mine. I hope they can save my baby.
    When is a mother to cry, and think that there
    is hope for her child. Now I am pleading,
    “Oh God, why me, why her?” Then a doctor came
    to me and said that she still may live. A ray of sunlight
    filled the room; it knew I would see her

    A poem by congenital hydrocephalus patient Beth Boberg copyright 2004
    written as a teenager at age 17 in 1988, from my mother’s perspective.

    • ildikobrown
    • November 1, 2010

    You are not imaginging the headaches, I also find myself crippled with headaches. I sadldy, have just learnt to live with them. It is my partner I feel for, who doesnt know how to help me. Wish there was a cure or solution at least for the headaches. They really can run you down…

    • Julie Mata
    • October 8, 2010

    Thank u so much for posting…its great to know im not imagining my headaches or…..there r days where i can barely function due to the headaches that i get Thanks again:):):)

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