Patient Comments: Hydrocephalus - Causes

What was the cause of your hydrocephalus?

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 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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Comment from: 13-18 Female (Caregiver) Published: November 03

My daughter was diagnosed when I was 8 months pregnant with her. She has Dandy Walker variant and a VP shunt was placed when she was 7 weeks old. We have had some scares but developmentally she reached her milestones on time and is now 13 years old. When she was 10, she had her first revision after experiencing headaches and memory issues. We have a great neurosurgical team though and hopefully we don't see them often.

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Comment from: Gus K, 45-54 Male (Patient) Published: August 05

I had a Codman programmable shunt inserted about 8 years ago. Have been pretty healthy since, but do have balance issues and the Quasi Moto walk (dragging of the right leg) at times. Went to the doctor and they adjusted the shunt and are now waiting to see if symptoms improve or if a revision is needed.

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