Patient Comments: Hydrocephalus - Describe Your Experience

Please describe your experience with hydrocephalus.

Comment from: kristin, 3-6 Male (Caregiver) Published: June 03

My experience was not one of my own it was my son's. He lost his life at 3 years old to this disease. His shunt clogged with brain tissue and when they put him under for surgery that morning he never woke back up. So you could say my experience is hard and very difficult to deal with. If your child has this disease and becomes sick all the time my advice is to push the doctors to do more. I tried to tell the doctors he had symptoms of malfunction with his shunt and they thought he had a cold. Now I don't have my son and he never got to live his life. I hope no one has to ever experience the loss of their child the way I did.

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Comment from: dora, 7-12 Female (Patient) Published: June 03

My daughter was diagnosed with hydrocephalus when she was just born, she is a premature baby and we live in Mexico, when she was like ten months old, she needed the shunt, and for us was so hard, because we couldn't find a neurosurgery pediatrician here in Mexico, then after having a hard time trying to find a doctor, we went to New York and she finally had the surgery, which was very successful. Now my daughter is almost 11 years old, she is living a normal life, she is tested every two years and the doctors say that probably she would not need another surgery.

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Comment from: renae, 13-18 Female (Patient) Published: May 26

I am 15 years old. I have been suffering from headaches and other symptoms to do with this condition. I went to the doctors and the told me to take a CT scan. I did. I have just been to the doctors and they told me my results. I have too much fluid in the ventricles. I have to go see a specialist as soon as possible. I may or may not have this condition, but that does not change how I feel. I am terrified and so is my family.

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Comment from: 35-44 Female (Patient) Published: May 20

I was 14 when I was diagnosed with hydrocephalus I collapsed in school and had 3 epileptic seizures. When they did an MRI scan they discovered that I had this condition. I had my first operation when I was 16 and my first shunt was inserted. I had the shunt revised when I was 25 just the top part and then when I was 32 I had the whole shunt replaced. I have status epilepsy and I had it for 18 years. I have to take medication. I am now driving; I take 4,000 mg of medication every day. I live in Ireland and I have never met anyone who developed hydrocephalus.

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Comment from: marie, 45-54 Female (Patient) Published: April 16

I did not know I had this condition until going to hospital with a suspected broken nose and had a scan on my head. I have always suffered with headache and dizzy spells for as long as I can remember. I was admitted to hospital after the diagnosis.

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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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