Patient Comments: Hydrocephalus - Describe Your Experience

Please describe your experience with hydrocephalus.

Comment from: meghan1991, 19-24 Female (Patient) Published: February 24

I was diagnosed at age 22 with obstructive hydrocephalus. During summer break I volunteered for an attention study at our local university, involving an MRI machine. Having been a sophomore in college, I hadn't noticed any physical symptoms, and never got sick or showed any symptoms of anything. After the study, we looked at the images collected, and my ventricles were insanely large. I was immediately referred to my primary care doctor for further investigation. Having been very healthy my whole life, my doctors were in disbelief, and it wasn't until I met with the neurosurgeon that we were able to find any symptoms. The doctor asked me about my previous semester at school, and this was when it hit me. I failed 2 classes. Both of the classes were very challenging, but questioned me in ways I hadn't ever been tested. They required pure regurgitation and memorization. I would study 20 plus hours for a single exam, and would still get a clearly failing score. Having this realization raised a huge red flag for me and my doctor and 4 days after this meeting, I was scheduled for an endoscopic third ventriculostomy (ETV). The recovery time was short (3 days), and I made it back for fall semester and graduated on time! My memory has not improved, but hasn't gotten any worse!

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Comment from: AndyMaxHK, 45-54 Male (Patient) Published: February 17

I have normal pressure hydrocephalus. I was 40 when I was diagnosed with the condition. I started noticing mental changes and cognitive impairment after I worked for 6 months in a tunnel (I'm a civil engineer) with a chemical called toluene di-isocyanate (2,4 TDI). I went for an MRI which showed ballooned ventricles. My neurologist told me I needed to have a lumbar puncture (LP) as soon as possible, which I did. The worst decision I've ever been encouraged to make. I've had headache every day ever since. I have seen my share of 'experts', none of whom have been able to help me with the headaches. My point is, if you are found to suffer from adult-onset hydrocephalus make absolutely sure you get a second, or even third, opinion. Having this knowledge might have stopped me from having the LP. Don't make the mistake I did and trust every word your doctor tells you.

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Comment from: cagey, 55-64 Female (Patient) Published: February 10

My hydrocephalus began last fall with balance/falling problems and memory and incontinence. The neurosurgeon I saw read my CT scan and determined my left and right ventricles weren't draining. I had a shunt put in with a drainage tube going behind my ear and down my chest into my stomach. I had it done twice because the first one failed within a week but this last one has been fine. My only issues are with the nerves growing back and my incision healing. It might have occurred when I dumped my motorcycle a few years ago.

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Comment from: Matjie, 25-34 Female (Caregiver) Published: December 01

My daughter had congenital hydrocephalus, heart defect and brain damage. I was advised that the water from the brain can be drained through operation. But unfortunately it never happened because she had multiple abnormalities and she passed on 13 October, 2006 due to all those illnesses.

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Comment from: Rahul, 25-34 Male (Patient) Published: October 21

After going through all the patients' reviews, I think that I've been very fortunate. I was diagnosed with hydrocephalus at the age of 6 but the shunt got blocked at the age of 9 which led to another surgery. But the serious shock came when I was 16. I had a repeat of all the symptoms but the diagnoses was not properly done which lead to my eye sight loss. After that, I went on to do my regular education with the help of special software that can help visually challenged people. Today I'm a manager in a multinational company in information technology with a doctoral qualification and leading a married, super normal life. So whoever go through my article, please don't think that this problem is end of your life. You can still do so much for this world.

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Comment from: cathal, 25-34 Male (Patient) Published: September 25

I have had hydrocephalus all my life and had a few operations to put VP (ventriculoperitoneal) shunts in. I'm now 30 and the headaches I get are awful, sometimes really bad, making it hard to walk or anything, as I also get lower back pain too when standing too long. I have to sleep to ease the pain and take pain killers but not working always.

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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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