Patient Comments: Hydrocephalus - Describe Your Experience

Please describe your experience with hydrocephalus.

Comment from: John DeHeer, 55-64 Male (Patient) Published: January 10

I was diagnosed with hydrocephalus and a Medtronic Strata valve was implanted. The doctor seems to change the rate of flow quite often. Recently I had a significant chronic subdural hematoma along with a chronic bleed. The emergency room doctor explained the diagnosis and called for me to be heli-evacuated immediately. At the hospital they drilled a bore hole and drained the blood that would lead to severe and violent seizures that would lead to delusions and hallucinations. I now cannot drive for 6 months and will have speech, physical, and occupational therapy and am left with cognitive thinking issues. It has been terrible. My doctor when I went to him 2 days prior to emergency room where hematoma was spotted, adjusted my shunt and only did plain films after I returned to him due to original hydrocephalus symptoms returning. We asked for CAT scan where the chronic bleed would have been spotted but he did not feel that necessary and just did x-rays and adjusted the rate of flow on the Medtronic strata valve.

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Comment from: BobK, 45-54 Male (Patient) Published: December 07

I was born in 1969 and diagnosed with hydrocephalus shortly thereafter. I have had 2 replacements (1989 and 1999). In 2008 I started experiencing seizures and was diagnosed with epilepsy. All tests performed showed shunt was working properly. I have had no other surgeries for hydrocephalus since 1999.

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Comment from: Fred, 45-54 Male (Patient) Published: November 24

I received a severe trauma to my brain 7 years ago. I had a severe head ache that a high tech therapist who uses electro crystal therapy along with another high tech bio feedback device called SCENAR and a cranial sacral therapy on me were able to relieve. My head ache didn't bother me for years, then I began getting a head ache that was progressively getting worse. It felt like my skull was being blown up like a balloon. I would put light pressure on my head with my hands and feel the plates in my skull move. So I was certain my head was being blown up like a balloon and at the time I thought this was being caused by all the scar tissue caused from my brain healing so many damaged wiring in my brain. Then I went through the situation of experiencing a problem with one of my teeth that was very painful. I'm not 100 percent sure what was the true cause of the sudden release of the pressure in my head. It could be something else but to the best of my thinking I believe it was the pain from my tooth that relieved the pressure in my head. I was in pain from my tooth and at the same time I felt euphoric because I experienced the sudden release of the pressure in my head that was causing me to experience a very difficult type of headache to tolerate. It took 7 years for me to realize hydrocephalus was the cause of my headache.

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Comment from: GeeGee1958, 55-64 Female (Patient) Published: October 12

I was born in May 1958. I was diagnosed with hydrocephalus in September of that year. The shunt was implanted but no one knew what to do. My mother barely 20, was told contradictory information like, 'pump the shunt daily', and 'don't touch it'. We moved to Germany when I was a year old. The doctors there knew even less. I had a couple of incidents where the shunt stopped working but no surgery until I was 6 when they inserted an extension to the drainage tube; that was in the superior vena cava but as I grew it came out of that vein and they put the extension down into my right arm. I had no major problems for several years. The last week of my junior year of high school I got a headache. We initially thought it was stress but it was still there after several weeks. The neurosurgeon assured us there as nothing to worry about as I had no other symptoms. Two years and seven doctors later they replaced the original shunt. I had a 'severe' headache (literally hurt to blink for two days) for two weeks. That headache gradually dissipated over the course of three months. That was in June of 1977. I've been fine since. I graduated from junior college and have worked as a physical therapist assistant since 1981.

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Comment from: kat, 45-54 Female (Patient) Published: September 09

I had the shunt surgery for hydrocephalus in November of 1963 just after turning 1 year old. The doctors told my mom that if I didn't grow fast I shouldn't need a revision and I never did. Other than a spell of headaches when I was about 9 that went away I have had no problems. From reading these posts I am very aware of how fortunate I am and am very grateful. I do wish I could find people my age who were born with this. I have always wondered if it would affect me as I got older. So far so good. I hope for the best for all of you.

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Hydrocephalus - Causes Question: What was the cause of your hydrocephalus?
Hydrocephalus - Signs and Symptoms Question: What were the signs and symptoms associated with hydrocephalus in someone you know?

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