Patient Comments: Hydrocephalus - Describe Your Experience

Please describe your experience with hydrocephalus.

Comment from: cephalusphil, 45-54 Male (Patient) Published: July 07

I am 49 years old and was diagnosed with hydrocephalus. The neurosurgeon put in a programmable shunt and everything was great for about 1 1/2 weeks. I began to have abdominal pains and x-rays showed that the drainage end of the catheter was all bunched up in my pelvic area. This is quite painful for a man to deal with. It was affecting my ability to urinate, sleep and was causing irregular bowel movements. After only 7 weeks since the shunt placement, I had to back in for a laparoscopic surgery so that the drainage catheter could be shortened. Now my surgeon thinks that I may have nerve damage from the catheter lying in the pelvic floor for almost 7 weeks. Along with this, I have developed insomnia and can only sleep about 3-4 hours a night, even with the help of Lunesta. If I had it to do all over again, I would never have had the shunt put in. I haven't been to work for 2 months, my emotional state is off the charts. My personality seems lifeless.

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Comment from: sunshine, 25-34 Female (Patient) Published: May 08

I was diagnosed with hydrocephalus after a long period of bad headaches that got worse and started to feel pressure in my head. At my six-week check-up, they did my re-scan, and found the cause of the hydrocephalus: I had a brain tumor. I have been through multiple surgeries. I've had a shunt put in, a revision when I started to over-drain, continued with problems, and finally had the shunt taken out. I'm still considered to have "high pressure," but "stable" and opting to not have the shunt put back in. I'm still suffering from pressure head pain. I feel the worst when the pressure outside changes.

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Comment from: Mother, 0-2 Male (Caregiver) Published: November 21

On Wednesday I took my son for monthly check up and the nurse told us to go and do a checkup for hydrocephalus. It is today, I don't know how I feel, and I am very scared more than anything. My son is months old.

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Comment from: Sarasymonspolk, 65-74 Female (Caregiver) Published: March 18

My dad had hydrocephalus. He died from pneumonia.

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Comment from: patty novak, 55-64 Female (Patient) Published: February 11

I had an aneurysm rupture in my brain; I have a shunt, new aneurysm also and I am constantly getting infections in the brain and severe symptoms of hydrocephalus.

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Comment from: sarahjane, 35-44 Female (Patient) Published: January 29

I am 40 years of age, and after suffering many years with what the doctors had said was severe migraines, I have now been diagnosed with hydrocephalus. At least something will start happening now.

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Comment from: Bobbi P, 65-74 Female (Patient) Published: January 27

With hydrocephalus I wonder if anyone has ever experienced off balance issues. I have been leaning to my left side with occasionally falling down.

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Comment from: Caasi, 0-2 Female (Caregiver) Published: October 15

My daughter was diagnosed with hydrocephalus 8 months into my wife's pregnancy. Neither my wife or I nor any family members have had the condition before. The MRI scan showed her brain parts were normal. She had the shunt surgery a month after birth. It's been 2 weeks now and she is very stable and normal. Hopefully she will go on to live a normal life.

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Comment from: 55-64 Female (Patient) Published: August 20

I have excessive fluid on my brain. I get severe headaches, which keep me up most nights. I get nauseated and vomit a lot and I have found my balance is a bit off.

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Patient Comments

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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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