Patient Comments: Hydrocephalus - Describe Your Experience

Please describe your experience with hydrocephalus.

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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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.

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Comment from: Pisces, 45-54 Female (Patient) Published: November 12

I am waiting to see the neurosurgeon to discuss what's going on. My doctor thinks it is hydrocephalus. I have a tendency to lean to the left hand side, my left side is weaker, I feel like I am walking on jelly, and I have pressure on my head. I have a funny sensation across my face when I need to sit down and rest and any type of physical activity makes me feel worse. I am curious as to what the sequence of events will be. Will they drain me as a temporary fix, will they do lots of tests, before fitting a shunt? I really don't know and that's what I think is worse.

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Comment from: sherylsnelling, 45-54 Female (Patient) Published: September 23

In 2006 I began having severe headaches. Finally after sometime I was diagnosed with hydrocephalus, so a shunt was put in and now all is great. Every once in a while the area (base of the head) is very swollen and tender, it usually begins to drain when this happens.

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Comment from: 35-44 Female (Patient) Published: September 03

My daughter born with hydrocephalus, I found out when I was 5 months pregnant. The doctors told me that a shunt would be placed in her head to drain the fluid, and that was never done. We saw the neo-care doctor every month for three months and even her primary doctor and they told me she was fine. She only lived 3 months.

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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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