Patient Comments: Hydrocephalus - Describe Your Experience

Please describe your experience with hydrocephalus.

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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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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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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