Hydrocephalus Expertise at Your Fingertips — 24/7/365

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We at the Hydrocephalus Association are proud to announce our new online Hydrocephalus Resource Library.  For decades now, our hydrocephalus support professionals have been providing education, information, and support to those living with hydrocephalus, their families and loved ones, and professionals hydrocephalus library pictureworking in the field.  We know well how many burning, unanswered questions there are regarding the complicating factors associated with hydrocephalus.  So, to support you further, we now have created an online library, filled with expert advice, research findings and plain old good thinking.  The Hydrocephalus Resource Library allows you to search as deeply as you wish for answers or advice for the many complex questions you may have — any time of day or night, weekday or holiday!

Have you been wondering about the effect of scuba diving on shunts; flying and increased intracranial pressure; distal end complications, including abdominal pseudo-cysts; the effects of electro-magnetic fields on programmable/adjustable shunt valves; slit ventricle syndrome; pregnancy and hydrocephalus; constipation and shunts? Are you looking for advice on what to do when your scans are “normal” but you are having classic shunt failure symptoms?  Answers to many of these questions and more can now be found in our brand new resource library HERE.

Today, we are inaugurating the new online Hydrocephalus Resource Library.  This is just the beginning!  Our Resource Library is an evolving, digital resource for you, and much of what it contains has come from our many conversations with you, as well as from research publications.  When you ask a question of the Hydrocephalus Resource Library and it doesn’t provide an answer, the HA staff will add and update articles and other materials related to hydrocephalus.  Please let us know what you think.  As always, we appreciate any and all feedback you may have for us.

7 Comments for : Hydrocephalus Expertise at Your Fingertips — 24/7/365
    • Alexis Witsell
    • September 13, 2018
    Reply

    At the age of 7 I was diagnosed with encephalomyelitis and hydrocephalus. I had a VP shunt (-bactiseal catherers x2) placed on the right side of my head about 4” above my ear. I haven’t had many problems, I have been very fortunate since 2004 after they figured out my situation (spent 5 months in the hospital). But my main concern is am I able to scuba dive without any issues?

    Also for all of you wondering my Doctor’s name is
    Dr.Stephanie Einhaus she is truly my blessing and an amazing and informative dr.

  1. Reply

    Hi,
    I am a 38 year old male who fell into a coma in early 02′ and had an emergency VP Shunt implant in the right back side of my head.
    if I turn my head to the far left side, minutes later I will experience bad poking pains in my right neck and abdominal that sometimes feel like 4 or 8 on a scale of 1 to 10.
    For the past few months when sleeping on my shunt, I will experience bad sharp pains and have to rub it continuously to subside the pain that feels like a 3 or 5 on a scale of 1 to 10.
    Dr. Sheridan of Kaiser Redwood City did the procedure, and he said that the pain could be scar tissue.
    I don’t know why I get the pains when sleeping on my shunt, as I’m curious to know why this happens, and if there is a way to subside it completely? Thanks

    • Claire larrie
    • October 27, 2017
    Reply

    I had a shunt implanted several years ago, had it adjusted a couple of times. Since the last adjustment I started to feel dizzy. I waited awhile to see my dr, they said give it time.Went to neurologist,he said he has the same thing and told me to live with it ! I was diagnosed with positional vertigo,which brings me back to the reason I’m here.. so is it safe for me to fly ? Claire

    • Carol Lunn
    • November 3, 2010
    Reply

    My husband, 82, is in the process of testing for a Dx of Normal Pressure Hydrocephalus, which is highly likely based on the brain MRI . I am interested in learning of experiences of others who have this diagnosis and have had the shunt proceedure. He has trouble walking, balance and exhuastion. No other symptoms as yet.
    The shunt proceedure seems awfully scary to me so I want to learn as much as I can now.
    Thank You

    • William Kendra
    • November 2, 2010
    Reply

    I had a shunt implanted in the Summer of 1956. Fortunately, I have had no revisions. I am interested in information about the proicedure and its development.

    • Jill Orr
    • October 28, 2010
    Reply

    I found I had Hydrocephalus at about the same time we lost a house to a hurricane, my husband had Cancer ( and later died,) I had found a place to build and was building a house and renting elsewhere while my husband was in the hospital. He never did get in our new home. It was after this that (and I do not remember the amount of time…because did not realize what was happening) at first had such a hard time walking…and in new place did not know anyone, except two neighbors up the street I met finally, who still remain my dearest friends….so what I still know about it is limited and think I should know more so very happy about the Resource Library….Jill Orr

    • Jeanine Pickert
    • October 28, 2010
    Reply

    So happy about the Resource Library. I recently had a cat scan and all looks good. I still get
    pressure and headaches most of the time when sleeping or just waking up in the early morning.

    Thank you for all information.

    Jeanine Pickert

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