Adults and Caregivers

A hydrocephalus diagnosis is overwhelming whether you’re a recently diagnosed adult or someone who’s been living with the condition for many years. If you’re a friend or family member, you’ve likely felt overwhelmed while caring for or supporting someone with hydrocephalus. A particular characteristic of hydrocephalus is that symptoms and challenges are often invisible to others, which can lead to a feeling of isolation for those living with the condition.

Helpful Resources

The Hydrocephalus Association provides essential tools and resources that enable you to have more control of your life. We provide the following documentation and can help connect you with resources for questions or issues you may encounter.



Learn about hydrocephalus, including treatment options and emergency medical situations.

Physicians Directories

Connect with the right healthcare professional to ensure excellent care for all of your clinical needs. We offer Physician Directories as a resource for both families and clinicians.

Hydrocephalus Resource Library (HRL)

Find educational articles about a variety of topics related to hydrocephalus.

Trending Topics

What are the topics we are receiving the most inquiries on right now? Through blogs, articles and videos, we provide you with information from medical professionals and Hydrocephalus Association support staff on the topics that are important to you.


Be informed and current about hydrocephalus by tuning into interactive, free webinars on a variety of topics.

Community Networks

Meet adults and caregivers who are navigating similar experiences. Visit these portals:

Other Hydrocephalus Resources

Reach out to other organizations and hospitals for valuable information and support for individuals living with chronic medical conditions.

15 Comments for : Adults and Caregivers
    • Nanita Riley
    • February 16, 2018

    Hi I was born with Spina bifida with hydrocephalus I have been in an out of the hospitl for 3 yrs stroke x2 eye problem Ihave never been on this sight before but I do need some help

    • Sathiabama
    • January 31, 2018

    I had vp shung before 20 years. No problems.

  1. Reply

    Recently had shunt installed. The shunt has made a massive improvement to my well being but has left me with a low grade continuous head ache. My surgeon tell me the shunt is set on 8 and their is no further adjustment that can be made. I wonder what would happen if the shunt was adjusted to,say,6.

    • Sarah Willis
    • November 21, 2017

    Recently diagnosed with hydrocephalus. I am 29 years old and was diagnosed this year 2017…. if I was born with this like my doctor says…. why am I now showing symptoms… please help me understand this. Thanks

  2. Reply

    My husband had been diagnosed with normal pressure hydrocephalus, VP SHUNT INSERTED INTO the skull and into the stomach, on December 8th 2014 he was 67, then, a neurologist said nothing normal about it, supposedly it was from and old stroke not treated properly in 2012. No change in his behavior, Dementia too, has agitated episodes daily, hates nights, called Sundowning 😕 why did this happen to him? He is diabetic, and heart disease 3 stents 2008. I need answers please,

    • Adena Meninger
    • August 14, 2017

    My husband was diagnosed with hydrocephalus six months ago after a pituitary tumor removal. He is not a candidate for a shunt due to chronic meningitis and a continuously elevated WBC (proteins and neutrophils). His hydrocephalus is treated with frequent lp’s. His icp is building up so fast that he needs an lp on a daily basis. He recently had a stroke and has up to six seizures a day. The only thing scarier than all of this happening to my husband is the fact that the doctors don’t know how to help him. He assuredly suffering brain damage. He can barely walk or think or remember anymore. If you have any suggestions, I would greatly appreciate them. Thank you.

    • abegail
    • August 2, 2017

    I am abegail…my daughter is just 2months old.she’s name is alexa ghaile.I don’t have money to get her in to a neurologist…please help us..I want her to survive..

      • abegail
      • August 2, 2017

      I hope that somebody will help us…..please…she has also hydrocephalus…thank u

  3. Reply

    I am a 78 year old male who had a shunt placement in 2012. Today I still experience some vertigo and pressure on my brain. I have had 2 adjustments on my shunt. My doctor says that my mri’s look normal with no change. What are my options?

    • Kellie Dawn Jennings ( nee Windrum)
    • August 5, 2016

    Can hydrocephalous start being active again after being inactive since July , 1965 ? I am wondering because I was born with very severe hydrocephalous on July 21st, 1963 & I have had shunts put in when I was a very small child twice or more. My e mail address is

    • ryan gribovskis
    • July 13, 2016

    I am a 31 year old male I have had a shunt since birth ,, my neuro surgeon was mr hanieh , who has since passed ,, I have had no problems since I was around 13 years old ,that was the last time I saw mr hanieh who was happy to remove my shunt ,as he said I no longer used it , I now have been trying to get into the Australian army, since they have eased up on there entry requirement ,, however I am coming up against people who r less than helpful , at the royal Adelaide hospital ,as I need a medical clearance ,, can u give me any help as to making this happen for me asap as I am applying for army soon , cheers ryan

    • Marian Thackray
    • July 10, 2016

    I am looking for help as the spousal caregiver of a 90 year old husband diagnosed with hydrocephalus. What am I doing right and how could I do better.

    • Joyce Hunter -bright
    • June 27, 2016

    My sister recently had a shunt placement after being diagnosed with hydrocephalus she was Avery out going person before the surgery now she spends most of her time in bed . She sleeps a lot and still complain of headaches and she mention she need a band support for her adomen area. I,m so worry about her. Is this normal.please tell what can I do to help her.

    • Stephen Luptak
    • May 27, 2016

    How does a 65-year old male with NPH find work? I am recovering from a ETV performed in December. Where and how can I start a job search?

  4. Reply

    Recently diagnosed with Hydrocephalus….Hoping to learn more about this condition. I am a senior.

Leave a Comment

Change in Theme Options or on the cause edit page
Change in Theme Options or on the cause edit page
Change this in Theme Options
Change this in Theme Options