Patient Comments: Hydrocephalus - Describe Your Experience

Please describe your experience with hydrocephalus.

Comment from: poormedstudent, 25-34 Male (Patient) Published: August 14

I am a 26 year old medical student. I had hydrocephalus as an infant with surgery for a shunt at 8 months. I have had no issues my entire life thus far. I only had another MRI performed once about 5 years ago, which did not show any problems. My shunt has moved over time and probably does not work anymore. But, I know to simply watch for presentation of neurological symptoms that would need to be addressed.

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Comment from: CASIE5000, 25-34 Female (Patient) Published: July 31

I am 33 and I have hydrocephalus. I was 29 when I was diagnosed. I was in a car wreck and a CT scan picked up on this. I was told that my hydrocephalus was old and probably occurred when I was a small child. (When I was a baby, I fell down 15 cement steps.) I have constant headaches, seizures, intolerance to rainy weather, bright lights and loud noise. I receive social security because I cannot lead a normal productive life. I have not yet been shunted, but do have an appointment to see a neurosurgeon this month. I was not willing to get the surgery at first, but the headaches and seizures are getting unbearable. The only time I feel any kind of relief is when I am in a pool, floating.

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Comment from: ms, 75 or over Female (Patient) Published: June 30

I was diagnosed as having hydrocephalus at age 71. Conditions are: can't walk, incontinent, losing short memory. I had a shunt installed in 12/2009; at first I received some help, but not so for at least two years. Doctor says shunt is working, I personally doubt it, if it is working it is not helping. I am confined to stay at home, I need constant caregiver help. I am trying to find doctor near home that can give advice!

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Comment from: computergeek, 35-44 Male (Patient) Published: June 30

I am a 44 year old male. I have spina bifida with tethered cord and hydrocephalus. When I was 7 years old I had fever and major headaches for almost a year. I lived in the hospital for over 10 months. Seeing all these doctors, around the 10th month the doctors put a shunt and it goes from the middle of my back toward the lower right side stomach. I had it ever since the fever went away, and the headaches.

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Comment from: Kitty22032, 35-44 Female (Patient) Published: February 07

I had strep throat; went to the hospital for severe headache. They did CT and MRI and told me I have hydrocephalus (never had heard of it before they mentioned it). Between 2000 and 2005 I had had concussions and neck injury which I did not address. I made the choice to handle it as an outpatient - having acupuncture, deep tissue massage, craniosacral therapy and following modified Paleo diet (no sugar, no red meat, no carbs). Massage helps but the relief doesn't last. I am having headaches every day, pressure on head and left eye 24/7. I am drowsy and sleepy, lethargic, dizzy and lightheaded; I have a hard time concentrating, just overall feeling listless. I go to the neurologist and neurosurgeon next week.

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Comment from: A.P., 45-54 Female (Patient) Published: January 27

I had my first CAT scan at the age of 16, due to no period (all other tests were exhausted). Hydrocephalus was diagnosed. There were no other symptoms. At age 18 I suffered memory problems and had a suicide attempt. Immediately after, I had my 1st surgery. I have 2 children and lead a normal life now. A car accident at age 22 resulted in 2nd blockage and surgery. I am now 45. I have memory problems, but don't know if this is due to the shunt.

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Comment from: Blessed Patient, 35-44 Male (Patient) Published: October 28

I am 39 years old and I have hydrocephalus. I was a premature baby and was diagnosed early. I received my first shunt at the age of 3 I believe, and it was revised at the age of 8. Since then I have not had any difficulties. I have been married for 15 years 7 months and 20 days. We have a beautiful daughter. I live a full life and work full time. I am extremely active. I've played a variety of sports over the years. These days I lift weights, run and play softball. My treatment has been successful. One can live a full life with this illness.

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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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