Patient Comments: Hydrocephalus - Describe Your Experience

Please describe your experience with hydrocephalus.

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: poohbear88, 25-34 Female (Patient) Published: July 15

I have hydrocephalus, I have had 32 shunt revisions, and I have lived a normal life. But I'm going back to my doctor and I don't know if I have to have another surgery.

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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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Comment from: Tryford, 0-2 Male (Caregiver) Published: July 25

Very hard to understand the problem of hydrocephalus and its cause. The doctors say it's a minor problem but to me it's not a minor but a serious problem to the life of my young one. I do not understand or know what pain he is undergoing because sometimes everything is irritating him and everything bores him.

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Comment from: celeste, 19-24 Female (Patient) Published: February 10

I was 19 last year and I have hydrocephalus. I went through a lot of CT scans, also lumbar punctures and loads of blood tests. My doctor though I had meningitis. That's why I had about four or five lumbar puncture tests. I went in July and stayed sick till September and that's when I had my operation. Now I'm fine as a fiddle. I vomited and had seizures from July till September; I wasn't well at all. The doctors told me that nothing was wrong but it turns out they were.

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Comment from: kresti, 35-44 Female (Patient) Published: November 04

When I was in school I could not get my work done. I could not think clearly. My parents took me to doctors to get CTs done. They could not find anything wrong and thought I was just putting on an act. But my head aches and memory loss were getting worse to where I have lost most of my life. They have done 14 surgeries for hydrocephalus and I'm still not doing well.

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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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