Patient Comments: Hydrocephalus - Describe Your Experience

Please describe your experience with hydrocephalus.

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: 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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Comment from: Sparty, 65-74 Male (Patient) Published: May 20

I had a brain hemorrhage in 2004. I was diagnosed with NPH in 2012. I was progressively having difficulty walking beginning in 2010. It became very severe. Some say I also had some cognitive difficulties – maybe. I had a programmable shunt installed in February of 2012. Since then, I've had two adjustments. My improvement has been remarkable. I am now nearly "normal," although I am beginning to experience some stumbling again – I will be going back in for an evaluation. Overall, my experience with the shunt surgery has been terrific.

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Comment from: Tom, 55-64 Male (Patient) Published: April 25

I've had hydrocephalus for eight years now. I've had seven surgeries, not counting all the moving of the drain tube. I finally did get a doctor who knew what to do. Since he worked on me, I haven't had a problem. Why don't doctors just say that they don't know what to do, instead of doing surgery to try out something new? I could write a book on all the mistakes. I was forced to retire early and lost a lot of my retirement. I just hope others don't have to go through all the problems I did.

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Comment from: Pete, 13-18 Male (Patient) Published: April 17

I have hydrocephalus. I was diagnosed at 13. I had a ventriculo-peritoneal shunt (VP) put in. All went well until the cyst shrank too fast and bled. I needed another operation. Now, two years later, I'm fine.

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Comment from: anon, 13-18 Female (Patient) Published: July 31

I have had hydrocephalus since birth. I was diagnosed at 10 months. I have had several revisions, but the original shunt is still in place. Recently, I have been having horrible headaches and pain around the valve site and in the neck tubing.

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Comment from: Sally, 65-74 Female (Caregiver) Published: July 07

My 71 year mother has been suffering with what we now know to be obstructive hydrocephalus. Over the past 3 years, she has been getting increasingly dizzier and losing her balance to the point of falling down. Although her "previous neurologist" has known of this excess fluid in her brain, he told her it was normal and not to worry about it. We now have a new neurologist and a neurosurgeon will be performing a 3rd ventriculostomy in a month. Our prayer is that she will be able to enjoy the simple pleasure of walking again without fear of falling!

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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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