Results of our Facebook post: “What caused your hydrocephalus?”

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By Karima Roumila, MPH, Community Programs Director

graph1After posing this question to our Facebook members we received many comments from our community about the causes of their hydrocephalus as well as their age of diagnosis.  61% of the respondents said they or their loved one were born with hydrocephalus, meaning they have congenital hydrocephalus, while, 37% said they acquired hydrocephalus.  After viewing the responses, we want to remind our community of the key terms used for hydrocephalus classification, the causes of hydrocephalus and most importantly, provide our community with a list of resources for further information.

Hydrocephalus is often identified in one of the following ways:

  • Congenital hydrocephalus is present at birth. Hydrocephalus diagnosed in adulthood may have existed since birth and can still be considered congenital and may be referred to as compensated hydrocephalus.
  • Acquired hydrocephalus develops after birth as a result of neurological conditions such as head trauma, brain tumor, cyst, intraventricular hemorrhage (IVH) or infection of the central nervous system.
  • Idiopathic is when the cause of hydrocephalus is unknown, this is most commonly true ofnormal pressure hydrocephalus (NPH).

Other terms used by a doctor to describe hydrocephalus are “communicating” and “non-communicating”.

  • Communicating hydrocephalus is when the cerebrospinal fluid (CSF) flows freely throughout the brain’s ventricular system and the subarachnoid space
  • Non-communicating hydrocephalus is when there is a physical blockage such as a tumor somewhere in the ventricular system

Causes: The most common causes of congenital and acquired hydrocephalus are listed below.


  • Aqueductal Stenosis
  • Neural Tube Defect: Spina Bifida
  • Arachnoid cysts
  • Dandy-Walker Syndrome
  • Chiari Malformation
bar graph of proximal causes for hydrocephalus

  • Intraventricular Hemorrhage
  • Meningitis
  • Head injury
  • Brain Tumor

For more in-depth information we highly encourage you to read the following resources:

  1. Diagnosis of Hydrocephalus  webpage on our website
  2. Hydrocephalus Resource Library. Use keywords in your search to view articles
  3. PreNatal Diagnosis
  4.  Hydrocephalus diagnosed in Infants, Children and Teenagers
  5. Adults Diagnosed in Young and Middle Age
  6. Adults Diagnosed with Normal Pressure Hydrocephalus
  7. Click here for other useful links


5 Comments for : Results of our Facebook post: “What caused your hydrocephalus?”
    • Joan Cattie
    • December 14, 2011

    My daughter developed hydrocephalus after suffering a ruptured aneurysm and stroke at age 11. After many shunt revisions (once she had 2 in one day), she received a programmable shunt. It has been 1 1/2 years since she received the programmable shunt and we pray that we never have to see another revision again.

    • Evanjelita Cintron
    • December 14, 2011

    My name is Evanjelita Cintron. I was diagnosis with hydrocephalus since I was born. The doctors didn’t put a shunt in two months since I was born. I have had 12 surgeries throughout my life. Now @ 28 yrs old I’m a mother to little healthy baby boy who is 1 yrs old and wasn’t born with hydrocephalus. I have been blessed. My last two surgeries were in 2001 and haven’t had any ever since. I’m sure that if I made it this far many people like me can do it. God does and makes mircales.

  1. Reply

    I liked the young ladies comment about listen to the children and the parents. They know how they feel or how their child is feeling better than anyone. We know when something is wrong. My son, now 5, acquired hydrocephalus from Menigitis he caught in the NICU. He was 4 months premature and at age two months developed Meningitis. He has had one shunt revision and three replacements. I have disagreed with nuerosurgeons 4 times and insisted on further work up or second opinions and each time it was the correct things to do. I followed my instincts. Twice it was life as well as quality of life saving. Twice it saved my son from surgery that he didn’t need, as other causes were found. Do not be afraid to advocate for your child. Read, read, read, and make sure you have a supportive medical team who is willing to go that little bit extra. Question the reasons for each procedure and be informed. Knowlege is key. You will become the expert. Your child’s life depends on it.

    • hweiner
    • December 12, 2011

    The percentage for NPH probably is an underestimate of it’s prevalence, since many of us older folks are not on Facebook all the time. If you want to get more accurate answers to this question, it would make more sense to survey neurosurgeons directly.

    • Angela M. Carter
    • November 27, 2011

    I was diagnosed at the age of six weeks old. I was born one month early. The doctor told my mother that I would have probably been born with it. She was also told that the pathway either closed shortly after birth or was never open in the first place. We will never know. I have had approximately 22 surgeries in my life including shunt revisions, replacements. These also included Core Decompression and total hip replcements (bilateral) as a result of a steroid that I had to take to control my fluid pressure when the surgery couldn’t be done. The steroid caused bone collapse and osteonecrosis (death of bone) in both hips. My body didn’t react too well with the steroids.

    While in high school, I found out that my body rejects internal sutures. My body kept pushing them out and I developed infections that made me have to go back to surgery to clean out my incisions and have shunt revisions. It took my doctors four years to figure out the problem. I figured it out the third time in 9th grade, the doctors, twelth grade. After my last surgery in 2005, I told the surgeon, “NO DISSOLVING SUTURES!!!” They used them anyway and they didn’t dissolve. After almost a month, the nurse pulled them out. The doctor and nurse couldn’t believe it. When the internal suture popped out they were totally shocked and said that I should say that I am allergic to internal/dissolving sutures. My message to doctors,”LISTEN TO YOUR PATIENTS!!!!! They know their bodies better than you do. LISTEN TO THEIR PARENTS!!!!! They know their children better than you do.

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