Patient Comments: Hydrocephalus - Causes

What was the cause of your hydrocephalus?

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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Comment from: joe90, 45-54 Male (Patient) Published: September 21

I'm 45. I got hydrocephalus after meningitis within days of birth. I had a VA shunt put in then which failed when I was 14. Then I got another VP shunt, which failed either top or bottom end over 10 times in 4 years. Eventually the surgeons put one giant catheter at the top end (doctors look aghast when they see my scans) and I have had no problems since (except epilepsy, which developed in my teens). I am extremely bright, I am told so, anyone worrying about hydrocephalus at the moment, don't get too disheartened. You could be lucky like me.

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Comment from: linnann, 55-64 Female (Patient) Published: October 24

I was diagnosed with normal pressure hydrocephalus. I was having headaches, difficulty walking and memory problems. They did surgery a year ago and so far I am doing well. One month after the original shunt surgery, i needed a revision, the tube in my stomach moved out of place, so I had to go back to surgery for them to replace it. I've had to go in 2 times to have the shunt opened a little more, because I was having headaches from a buildup of fluid.

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Comment from: ahmad, 0-2 Male Published: February 18

my son had hydrocephalus from birth.he passed away at the age of one and half years.doctors told us that he will be fine but they speaks lei.my son had 3 major skull surgeries in that period.I passed my lots of days in hospital with him.I felt he was in trouble.I love him very much and i miss him allot.he passed away since tow months ago.

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