Patient Comments: Hydrocephalus - Describe Your Experience

Please describe your experience with hydrocephalus.

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.

Was this comment helpful?Yes
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!

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
Comment from: 25-34 Female (Patient) Published: October 08

I was diagnosed at birth with congenital hydrocephalus. I was shunted at birth. I am now 30 years old and have had 9 revisions; in the last 5 years my last three revisions. I live a normal life, I work as a social worker and have a child. But I also have grown accustomed to the constant headaches that are a part of my life. I just had my last revision 1 month ago. So far it's ok. I still get headaches but at least it's not everyday. Nobody knows what the future holds for us, but it is important to be optimistic and strong-minded. It is hard for the patient and family to live with the disease. The constant hospital visits take a toll on the everyone and I know that at times I want to give up but it is important we trust our medical team, they are the most important part of our lives.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

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?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.