Patient Comments: Hydrocephalus - Describe Your Experience

Please describe your experience with hydrocephalus.

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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
Comment from: 19-24 Female (Caregiver) Published: September 02

My 23 year old daughter was diagnosed with Arnold-Chiari Syndrome when she was 12. At 22, she was diagnosed with hydrocephalus. It is so hard to tell if her symptoms are 'real'. She is only comfortable while lying down, on her left side. It has been so hard to get info, her doctor is supposed to be one of the 'best', but seemed very indifferent once she had surgery to remove C-1 vertebrae. Any help for finding more information would be extremely appreciated!

Was this comment helpful?Yes
Published: September 02

My son had hydrocephalus from birth. He passed away at the age of 5. The doctors will tell you that they won't need hardly any revisions and that's a lie. My son had 152 revisions and 2 major skull surgeries in 4 years. He developed seizures and was in the hospital more than at home. A lot of families at the hospital were in the same boat as us. The doctors told them tales too. Nothing prepared me for the life I was about to lead. I dearly miss my son it has been 11 years since he passed and it still feels like today.

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.