Patient Comments: Hydrocephalus - Describe Your Experience

Please describe your experience with hydrocephalus.

Comment from: kat, 45-54 Female (Patient) Published: September 09

I had the shunt surgery for hydrocephalus in November of 1963 just after turning 1 year old. The doctors told my mom that if I didn't grow fast I shouldn't need a revision and I never did. Other than a spell of headaches when I was about 9 that went away I have had no problems. From reading these posts I am very aware of how fortunate I am and am very grateful. I do wish I could find people my age who were born with this. I have always wondered if it would affect me as I got older. So far so good. I hope for the best for all of you.

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Comment from: Ozcloggie, 65-74 Male (Patient) Published: May 14

At 71, I now have to accept that I do have that 'water on the brain' or hydrocephalus. All these years I have recounted how my mother was upset, when she proudly walked with me in the pram and passers-by sympathized. As a primary school teacher (37 years) I had to explain that my head was/is too big for (normal) hats/caps to keep off the sun, while having to make the pupils wear hats. Now I shall be having an operation, after the MRI showed where the problem lies. I have no problems with balance etc., but memory is getting shaky. Even that diagnosis is affected by having moved residence twice recently and feeling a bit lost.

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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: jeff, 25-34 Male (Patient) Published: September 02

I was born with water on the brain, hydrocephalus. I don't know much about my childhood and the people that raised me are gone and I have a lump on my head that I had since I can remember. I get really bad headaches and tired a lot. I don't know what to do.

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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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