Patient Comments: Hydrocephalus - Describe Your Experience

Please describe your experience with hydrocephalus.

Comment from: Tryford, 0-2 Male (Caregiver) Published: July 25

Very hard to understand the problem of hydrocephalus and its cause. The doctors say it's a minor problem but to me it's not a minor but a serious problem to the life of my young one. I do not understand or know what pain he is undergoing because sometimes everything is irritating him and everything bores him.

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Comment from: celeste, 19-24 Female (Patient) Published: February 10

I was 19 last year and I have hydrocephalus. I went through a lot of CT scans, also lumbar punctures and loads of blood tests. My doctor though I had meningitis. That's why I had about four or five lumbar puncture tests. I went in July and stayed sick till September and that's when I had my operation. Now I'm fine as a fiddle. I vomited and had seizures from July till September; I wasn't well at all. The doctors told me that nothing was wrong but it turns out they were.

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Comment from: kresti, 35-44 Female (Patient) Published: November 04

When I was in school I could not get my work done. I could not think clearly. My parents took me to doctors to get CTs done. They could not find anything wrong and thought I was just putting on an act. But my head aches and memory loss were getting worse to where I have lost most of my life. They have done 14 surgeries for hydrocephalus and I'm still not doing well.

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Comment from: 19-24 Female (Caregiver) Published: September 02

My 23 year old daughter was diagnosed with Arnold-Chiari Syndrome when she was 12. At 22, she was diagnosed with hydrocephalus. It is so hard to tell if her symptoms are 'real'. She is only comfortable while lying down, on her left side. It has been so hard to get info, her doctor is supposed to be one of the 'best', but seemed very indifferent once she had surgery to remove C-1 vertebrae. Any help for finding more information would be extremely appreciated!

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Published: September 02

My son had hydrocephalus from birth. He passed away at the age of 5. The doctors will tell you that they won't need hardly any revisions and that's a lie. My son had 152 revisions and 2 major skull surgeries in 4 years. He developed seizures and was in the hospital more than at home. A lot of families at the hospital were in the same boat as us. The doctors told them tales too. Nothing prepared me for the life I was about to lead. I dearly miss my son it has been 11 years since he passed and it still feels like today.

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Comment from: nannie, 19-24 Female (Caregiver) Published: August 06

My granddaughter has aquired Hydrocephalus. Started having headache at the age of 15, had a shunt placed due to hydrocephaus. Her doctor could not find any reason for her condition. Although, she never made good grades in school, was told by the teachers she didn't try and gets easily distracted. She does not seem to have any common sense, and makes bad decisions. She has difficult remembering, and gets angry due to everyone repeating things to her. She didn't finish high school, but tested for her GED beginning her eleventh year in high school. She tested out and passed it. She married at eighteen years old, and recently gave birth to a baby. She is still not responsive, gets angry easily. I notice her frustrations but other family members think she is just immature. She has very low self-esteem. I feel she wants to do better and think she would benefit by attending a support group to understand how to deal with these issues. Most support groups are for younger children, is there any information out there that defines what some of the complications are, and how to deal with things better? Or are these problems just due from being 19 years old.

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Comment from: SoCurious2009, Female (Caregiver) Published: July 07

My experience is one of a kind. My little boy has it and he was diagnosed with it at 6 months and got the shunt at 11 months, but see the thing is he can't walk, crawl, hold him self up, nothing. Well he is very smart and charming he has a great personality, but he isn't very mobile now. He has the will and drive to do it all. I just am so confused because I want him to be independent so bad not just for me, but for him. He is going to make a great guy and I want all things to be possible.

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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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