Patient Comments: Hydrocephalus - Causes

What was the cause of your hydrocephalus?

Comment from: confused, 45-54 Male (Caregiver) Published: December 05

My brother was diagnosed with hydrocephalus in his thirties and he is now 44. He was told he could have been born with it or could have developed at young age due to head trauma. I was informed at a different hospital from top brain surgeon that it was impossible for my brother to be born with hydrocephalus because people that are born with it are born retarded.

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Comment from: 13-18 Female (Caregiver) Published: November 03

My daughter was diagnosed when I was 8 months pregnant with her. She has Dandy Walker variant and a VP shunt was placed when she was 7 weeks old. We have had some scares but developmentally she reached her milestones on time and is now 13 years old. When she was 10, she had her first revision after experiencing headaches and memory issues. We have a great neurosurgical team though and hopefully we don't see them often.

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Comment from: Gus K, 45-54 Male (Patient) Published: August 05

I had a Codman programmable shunt inserted about 8 years ago. Have been pretty healthy since, but do have balance issues and the Quasi Moto walk (dragging of the right leg) at times. Went to the doctor and they adjusted the shunt and are now waiting to see if symptoms improve or if a revision is needed.

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Comment from: nannybird19, 75 or over Male (Caregiver) Published: July 05

There was not any particular cause to my hydrocephalus, I felt my husband was not behaving as usual, he lost 30 lbs. very quickly and he had cancer of the duodenem, 20 yrs. ago, which led me to believe it was a reoccurance. After going back to his doctor, seeing many specialists, about a year went by without any diagnosis, I finally took him to my internist and after a few months she diagnosed him with normal pressure hydrocephalus. Sent him to a neurosurgeon he put a shunt in, seems to be working OK.

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Comment from: em, 19-24 Female (Patient) Published: April 22

I am 23, I have Spina Bifida. I was diagnosed with Hydrocephalus at about 10 days old; after closing my back at birth. I had my first blockage at 3 and have had 10 more between 13years old and 22. The space of time I get between surgeries was 4 years (16 years old then 20) down to 10-13 months. I have seemingly permanent daily issues with short term memory. I've learnt not to over-react when something goes missing however coping with family trying to cope, not understanding what this is like is very hard sometimes.

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Comment from: Jamie, 45-54 Male (Patient) Published: April 20

I am 49 years old have hydrocephalus and was originally diagnosed before I was 1. They operated and put in a rubber tube between my third and fourth ventricle of my brain. The operations resolved most of the symptoms and I have not had to revisit the Issue. The only long term consequences have been I am quite physically uncoordinated and I have a particularly bad memory for names. On the plus side I am pretty good with numbers. I graduated from college and earned a Ph.D. in biochemistry and have spent 15 years doing Biological research.

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Comment from: grandma, 55-64 Female (Patient) Published: February 18

I am now 60, had my first shunt at 15, they thought was congenital at the time. At 45, the shunt had to be replaced, the symptoms, falling, headaches, etc. The real thing no doctor told me at 59, I started having seizures, the buildup of scar tissue caused it. I wish the doctor would have said something.

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Comment from: tweetybirdnurse, 45-54 Female (Patient) Published: July 12

I have hydrocephalus and I was born with it. I am now 47 years old with no shunt. And I'm not mentally challenged. I also had two children who are doing fine.

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Comment from: Chrissymarie, 35-44 Female (Patient) Published: May 07

I am 37 years old and have had hydrocephalus since I was about 8 years old. That's when I had the shunt put in. I have had the same shunt since then. But I have been having very bad headaches. I go to my doctor on Wednesday, so I am hoping it isn't anything bad. I also have neurofibromatosis.

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