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.


23 Comments for : Adults and Caregivers
    • Maureen K Greene
    • December 8, 2018
    Reply

    Grandson due Dec. 18th

    • Chris L
    • September 26, 2018
    Reply

    My now 64 y/o father was diagnosed about 3 yrs ago. Due to a prior mini stroke he was not a candidate for a shunt. Being young only 22 at the time and inexpirienced I did not know what was happening, I watched him do thigs such as forget his new address, misplace things , unable to hold conversations. With all of these little things I thought he was just being stubborn it would often anger me because we were always so close and this was man that was beyond intelligent, a nyc paramedic And 911 dispatcher. with time hed also complain of knee pain and say it would prevent him from walking. I watched him slowly stop walking, from livig a normal fast paced life to a cane to a walker and now a wheel chair- ive watched him do things such as walk into walls like one would in a video game or movie. He is now in assisted living and the day to day is alot better cognitively – This disease is by far the most terrible ive ever witnessed and I sympathize with anyone going through this whether the person or caregiver etc. i encourage everyone do not get upset/ angry (much easier said then done) and if you notice yourself or soneone you care for deteriorating do not write it off as we (my father and I ) did, go consult a doctor asap!

    • Joy
    • September 13, 2018
    Reply

    My 88 year old Mother has Hydrocephalus (NPH) and was not a candidate for the shunt after tests at MCV in Richmond. She was diagnosed about two years ago and since then her health has deterogated greatly. Her balance, gait, incontiency, hearing, sight,
    and pain in her spine, legs, and back are getting worse each day. My. Mom has tried to hide all of this and she can not any longer. On doctor’s advice she is now in assisted living where we hope with PT, OT and meds administration she will do better than at home where
    she had a companion to help out, but that proved to be inadequate.
    Momis not giving up but has finally admitted she is so much worse. She is, also,forgetting things whichbreaks our hearts. Mom is anxious and she gets agitated easily. She is suspicious of everyone’s conversations …. thinking we are talking about her. Mom has always been independent and smart.. These changes, which are coming rapidly in recent months, is overwhelming to her and her children. There is little support out there and this disease is difficult on everyone as there is nothing we can do but watch her get worse.
    We pray for a cure someday and pray for those who suffer with this!

    • Ella Gilbert
    • June 24, 2018
    Reply

    I’m a 33 year old female I never knew a Dr could run test to say yes you r having Seizure‘s till I finally Told my dr in Nov 2017 about mine. Mine are uncommon I only have them 1 or 2 a year. So she sent me for CAT scan and an MRI Found a cyst The size of a larg egg and about A month ago I went to the ER with chest pain they asked for all my medications So I gave them then they ask what all medical conditions I have so I began telling them about the cyst So they did another CAT scan And found that I have just started getting hydrocephalus I told my neurologist About the new findings and he was not concerned What should I do I am now off work do to family dr putting me on medical leave because of my legs becoming so weak so please let me now what I can do. Thanks.

  1. Reply

    I am a grandma of a 4 month old who was diagnosed with Hydrocephalus. We were told that our grandbaby’s brain is only water no brain function that she would either die during birth or die and soon as she was born, well she survived the birth process she is healthy and we are all wondering if we should have a shunt put in for her to have a normal life.

    • kiki
    • March 9, 2018
    Reply

    I have Hydrocephalus VP shunt , & brain surgives and was born with it , I am wondering can I have a baby

      • April penman
      • March 12, 2018
      Reply

      Hi there im the same as you vp shunt since birth and ive had 2 children so you’ll be fine 😊 the only thing they said was that i couldn’t give birth naturally x

      • bernice jarrod
      • March 23, 2018
      Reply

      yes you can have a baby.I was had hydrocephalus realized when i was 3 months old and they put a shunt into my head.When i was 22 i had twins then i had another baby later on so a big yes and good luck

    • Nanita Riley
    • February 16, 2018
    Reply

    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
    Reply

    I had vp shung before 20 years. No problems.

  2. 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
    Reply

    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

  3. 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

  4. 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?

  5. Reply

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

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