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.

 


Knowledge

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.


Webinars

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.


11 Comments for : Adults and Caregivers
  1. 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
    Reply

    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
    Reply

    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
      Reply

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

  2. 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
    Reply

    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 kellie.windrum@gmail.com

    • ryan gribovskis
    • July 13, 2016
    Reply

    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
    Reply

    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
    Reply

    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
    Reply

    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?

  3. Reply

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

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