Patient Comments: Hydrocephalus - Causes

What was the cause of your hydrocephalus?

Comment from: See Well, 19-24 Male (Caregiver) Published: May 13

My son was diagnosed with hydrocephalus at the age of 3 months. I personally believe that it could have happened while I was giving birth to him. There was never any surgery performed on him, because the first time they checked him, they said they saw fluid and wanted to operate. But when he went back the second time, they said the fluid had miraculously disappeared on its own. My son will be 23 in July. He doesn't say anything and I was concerned about what I could do to remedy this. When he was younger he used to talk, but he won't say anything now. I would like to know more about the different surgeries or any shots that could possibly help him. He smiles all of the time and it makes me smile. Actually, he lights up the room with his smile. I just want what's best for him. Any suggestions would be appreciated.

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Comment from: Norms, 45-54 Female (Patient) Published: April 22

I have just been diagnosed with hydrocephalus. I am 51 years and in the last month or so have had major headaches. They've caused me to vomit and have affected my vision. These may last for days, and no matter what pain medicine I would take, it didn't seem to ease the pain – it just kept getting worse. Following a CT scan, they were able to identify the problem. That was two days ago. It's good to know what is causing the problem, but I am worried because one of my brothers died of this in the 1950s. I have an appointment with a surgeon next week. I'm a little nervous about what can be done and if it will work.

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Comment from: 35-44 Female (Patient) Published: April 19

I have had hydrocephalus since birth. I was shunted at 23 months old. At that time, the surgery had only been around for about two years. I was one of a handful of children to have the surgery in 1976. I have had only two surgeries. My first surgery was when I was 23 months, and my last was when I was 10 years old. I've been fine since then.

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Comment from: oldfinn, 55-64 Male (Patient) Published: April 16

I am a 63-year-old male. I was born hydrocephalic. The doctor who delivered me never told my parents that he had problems and had to use forceps to assist delivery. From what I was told in later years, he apparently used too much pressure and squeezed my head too much. No one noticed any problems until I was at the age when a child should try walking while holding on to furniture. I never did that. When my dad questioned the doctor, it was then that he was told of the delivery problems. At that time, shunt use was still experimental and the doctor did not advise it. I had some surgeries when I was a child to relieve the spasticity in my legs. The doctor that did those surgeries told me that there would be things that I "never" would be able to do. One being, I would never be able to father children. I wish that doctor was still alive today so I could introduce him to the three children he said I would "never" father. I am now also the proud grandfather of 10 grandkids. I am not saying I have had it easy. I manage the best I can. I have done work that is hard for "normal, able-bodied" people. Now I am experiencing age-related problems because of the hydrocephalus. But I am doing the best I can with what I have.

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Comment from: FlowerBomb, 13-18 Female (Patient) Published: January 14

I was diagnosed with obstructive hydrocephalus at the age of 13. It started with horrible headaches, and I could never seem to get enough sleep. Along with the hydrocephalus being on the bottom left side of my head. I also get migraines on my right side. I've been on an off too many medicines to count, and have had more MRI'S and cat-scans then you could imagine. I'm 15 years old now and I still suffer with excruciating headaches and I sleep all the time. I was even taken out of public school and put in online school. The doctors don't know what caused my hydrocephalus, but they say I will eventually require a shunt in my head. This illness scares me to death everyday.

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Comment from: Eve, 75 or over Male (Caregiver) Published: November 13

My husband just had surgery for hydrocephalus . The doctor never put a shunt in. Just drained the fluid. But now he is having awful headaches at the back of his head. They are scheduling him for another cat scan this week. Not sure what is happening.

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Comment from: 13-18 Male (Patient) Published: September 21

I was born with hydrocephalus, and I wasn't shunted until I was 9 months old. I am the youngest of 3 children, so my mother was worried when I wasn't walking, crying, or doing anything. I have very terrible balance issues and short-term memory loss. I'm just happy to be alive, but I still have to hear people ask me why I walk so funny all the time.

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