Patient Comments: Hydrocephalus - Describe Your Experience

Please describe your experience with hydrocephalus.

Comment from: hydrosux, 35-44 Female (Patient) Published: August 17

I am 42 years old and diagnosed at age 3 with hydrocephalus. I had a shunt placed in the back of my head. At age 6 I was diagnosed with a Dandy-Walker cyst. I had my cyst removed and then 3 months later I needed a 2nd shunt. It wasn't till I was 40 that I needed 2 more shunt surgeries due to 2 separate head injuries. The following year I had 2 revisions. I have not worked in over a year and it is depressing. I fear there will be more surgeries in the future. I have been told by my rehab team that I will not be able to return to my job in education which I terribly miss. I do not want to do a meaningless job like counting socks but my STM is horrible. I hope that at the very least my daughter and I will be able to move out of my parent's home to an apartment. Our house will be put up for sale shortly. We haven't lived there for almost 2 years.

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Comment from: dd, 55-64 Male (Patient) Published: August 17

I was found to have hydrocephalus at the age of 32. Mine is due to scar tissue totally blocking the brain stem area. My first shunt was a success and after 3 years I was able to return to work. I also went to college under a DORs program and obtained a teaching degree. I have been employed as a teacher for about 20 years. My big concerns started when I was 58 and it was suggested that i have the shunt replaced due to age. The surgeon decided to take a shortcut and insert the shunt drain under the skin, but without surgery to open and inspect where the end of the tube landed. A few months later I ended up in the ICU with an emergency shunt placed and a brain infection. A month later, a new shunt was placed in the back of my skull. I was able to return to work for the past 4 years however due to damages from the brain infection; I am now losing the ability to use my eyes for driving, TV, Movies and face to face type of meetings. I may have to retire earlier than I wanted due to my new limitations. I have also discovered that people like me do not quite fit into the disability section of social security, legal blind protection or at the work place. I will also warn that some hospitals who have the experts to help treat us are state entities and by law not held responsible for damages done to clients. Still it is great to be alive and high functioning. My hope is to someday find a way help others with this condition.

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Comment from: Justin, 3-6 Male (Caregiver) Published: August 17

My son had Hydrocephalus he had a growth on the back of his neck of brain tissue and spinal tissue. He lived to be 5. The doctors told me he would be able to live a normal life. THEY LIED! He had in 4 years 135 shunt revisions and 2 major skull surgeries to make more room. He also had Generalized Tonic Clonic Seizures due to so many surgeries. He was in the hospital more than at home and never really learned how to be a kid.

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Published: August 06

I am a mother of an 8 year old girl who was diagnosed with hydrocephalus when I was 7 months pregnant. She had a vp shunt placed 5 days after being born. She started with physical therapies at 5 months old. She has never had problems with her shunt. Thank god. She was a late walker and talker. She has overcome many battles, but there she is living a normal life and is a very happy child and makes me feel there is nothing one can accomplish. We, parents of children with hydrocephalus need to take it day by day.

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Comment from: craigquakertown, 35-44 Male (Patient) Published: August 06

I had hydrocephalus in the third ventricle of my brain they said if they didn't remove I could die. To make a long story short they removed the tumor, but after it was removed I find my mind and moods shifting worse than ever. Does this happen and is it going to get worse cause I feel like I'm outside my body sometimes when I have a mood swing I'm concerned and scared its affecting my relationship and my life.

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Comment from: 65-74 Female (Caregiver) Published: July 07

My mother in law has been diagonised with Hydrocephalus. However her condition is unfit for surgery as she is anaemic and suffering from severe Rheumatoid Arthritis. She has been bed ridden for more than 10 years now. Is there any remedy that can be done only by medication rather than surgey?

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Comment from: Blackcat, 0-2 Female (Patient) Published: June 03

I have Hydrocephalus; I've had it since birth. I had very bad headaches and because of it I have short term memory loss. I now have a shunt that has been working for over 20 years. I only had 2 surgeries, once when I was 2 then again when I was 10.

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Hydrocephalus - Causes Question: What was the cause of your hydrocephalus?
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