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Thread: Experience with ETV?

  1. #1

    Default Experience with ETV?

    Hi I'm new here. My husband was diagnosed with hydrocephalus at 13 and a shunt was put in. He is now 33 and has been lucky to not have had any issues until recently. His shunt is slowly failing and his doctor says he's a perfect candidate for ETV. His doctor is one of the best in the area and we trust him completely, but it would be nice to hear if anyone in his similar situation has had good experiences with it. We appreciate any responses! Thank you!

  2. #2
    New Community Member
    Join Date
    Oct 2006
    Location
    Mastic Beach, NY
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    10

    Default

    I had that procedure done on myself.
    It did drain all the remaining CSF in my third ventricle.
    I went home the day after was done.
    It drained so well that on my first full day home I could hear and feel the remaining CSF sloshing around in my head.
    It also made my spine super sensitive to touch. Within a few days my brain produced enough CSF to stop the sloshing
    around feeling and my spine went back to feeling normal again.
    Ultimately within a few weeks they put in a second VP shunt because the 3rd vent didn't do me any good.
    It was worth the try though. Like when I had a ventricular-spinal shunt for 14 months.
    Then I had to have that shunt converted back to a regular VP shunt.
    I've had a lot of experiences because of hydrocephalus over the past 17 years.
    If you have a question please just ask. Nothing phases me anymore.

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