Hydrocephalus Association Launches Dedicated Normal Pressure Hydrocephalus Page

The Hydrocephalus Association (HA) is proud to announce the release of a new informational page specifically dedicated to the needs of persons diagnosed with Normal Pressure Hydrocephalus (NPH).  The new NPH page gives a broad overview of NPH, highlights the latest edition of our NPH booklet, illustrates and describes the three classic symptoms that define it, and provides access to resources that will prove helpful to people with NPH.
The need for clear and useful information is one that we’ve striven to meet since our inception.  The old website was designed to reach all populations living with hydrocephalus but was limited in its resources, making it difficult to give the different types of hydrocephalus the appropriate attention they deserved.

The information needs of our SHYMA/LOVA population are different from those of the NPH or congenital population and this is the first step in our effort to address these differences.  Plans are being implemented to create additional specific information pathways for the other types of hydrocephalus in the coming months.

The new HA website, deployed last year, was designed to be more responsive to changes in technology and, more importantly, to better serve the needs of our community.  Our NPH page is the first step!

11 Comments for : Hydrocephalus Association Launches Dedicated Normal Pressure Hydrocephalus Page
    • Corrine
    • November 15, 2018
    Reply

    Born in 1976 with “water on the brain” Hydrocyphalus. First shunt was place at the age of 6 weeks. Replaced in 1990 based on a malfunction and blockage. Presently had a seizure and am having issues getting proper help. Now we play the waiting game. I am 42 years old

    • Judy
    • April 14, 2018
    Reply

    Being shunted on May 14th, very scared. Any info or help will be helpful. Thanks

    • hweiner
    • February 11, 2012
    Reply

    Does anyone else have problems with headaches? Mine are migraine-like (pain on the same side as the shunt), and happen when the weather is changing. Seems like the shunt is working overtime as well, with the catheter sticking out like an angry vein.

    • Hilary
    • November 4, 2011
    Reply

    Phyllis,

    I’ve had a lot of problems with fatigue. It took 6 years for me to be diagnosed, despite having gone to a neurologist to get an MRI of my brain interpreted. The fatigue is getting a bit better as time goes on, but I still have to take afternoon naps most days. It is not quite 3 years since I was first shunted.

  1. Reply

    Finally!! After 3 years of progressively declining my husband is awaiting surgery for a programmable shunt. 5 neurologists later. Is extreme fatigue one of the symptoms also? He is 78 yrs. old and I’ve had to take over doing everything which is difficult as we have worked in business together and to see him declining is extremely difficult. A learning experience we could have lived without. My heart breaks as I read some of the comments.

    • Karen
    • February 19, 2011
    Reply

    Thanks for this special site. Both our parents had NPH our family is always on the look out for more information. So we are grateful for current information. Thanks, Karen & Susan

    • Joseph
    • February 18, 2011
    Reply

    To: C. Lunn-

    I am a 60 yo male who was first diagnosed with NPH and shunted in 2004. My shunt failed in 2007 and had several additional rounds of surgery. Needless to say, my wife and I have been around the block and back again. If you would like a voice of experience, please feel free to contact me directly: jblipton@hotmail.com

    • C. Lunn
    • February 17, 2011
    Reply

    Thank You for creating a dedicated page for NPH. It was too difficult getting at the information
    I needed.. this will make it much easier. My husband has been diagnosed with NPH and I feel like a deer in the headlights.

    • Mark Aho
    • February 16, 2011
    Reply

    I just wrote and it’s deleted cuz I didn’t have a valid email on there, Nuts! I just write to thank you for the support and info. ‘cuz it helps me w/ my indep. and lifestyle.
    May the gift return 10 fold.
    Mark

    • Duane Hilton
    • February 15, 2011
    Reply

    The onset of my Hydrocephalus was shock to say the least! I am now on my third shunt. It has affected every part of my life. But at least I am still able to paint.

    • Hilary
    • February 15, 2011
    Reply

    I am glad you are doing this, as it is difficult sorting through information that doesn’t relate to NPH. BTW, I was first shunted at age 51 in 2009, and it took doctors 6 years to figure out what was wrong with me. This, despite an MRI with enlarged ventricles and complaints about balance and cognitive abilities. I still have enough cognitive difficulties that I am unable to work. If I had been treated promptly, things might have been different.

    I hope this page helps raise awareness about NPH, and people who exhibit the symptoms I did are treated promptly. Thank you for doing this!

    Hilary

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