Those Battling Hydrocephalus Come Forward to Share Their Stories

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When UFC fighter Ray Borg shared how hard it was dealing with his son’s hydrocephalus, away from the rest of his family in New Mexico, it brought together an entire community in Colorado dealing with this disease. Families from across Colorado started writing about their stories online and shared them with 9News Denver. They not only wanted to reach Borg, but other families who think they’re walking hospital hallways – and facing this diagnosis – alone.

Click here to view the news piece.

9 Comments for : Those Battling Hydrocephalus Come Forward to Share Their Stories
    • Dixie
    • September 20, 2018
    Reply

    My son was born in 1954 with Hydrocephalus but was not diagnosed until he was 6mo. old His first shunt was in his back,they removed a kidney and hooked it to his urethra.Doctors said he would be lucky to live past 20.Pressure had been so bad it damaged his optic nerve and was blind. When it failed they put in another. When it failed they put one in behind his ear and hooked it to his jugular vein. He now has no shunt working and has a lot of fluid on his brain, Has headaches,leg trouble, uses a walker. He is now 64.

    • abbe nelson
    • August 3, 2018
    Reply

    My daughter is 46 and had been living wth hydrocephalus since 6 months of age. Her first shunt was made out of plastic tubing that went from her head down her neck and emptied to her heart. the plastic has broken off into hundreds of pieces near her neck and heart! We we told that if they do surgery she will die. She is the mother of two beautiful girls and if anything happened to her I don’t know what I would do. We live in Toronto Canada and the doctors stated she is extremely complicated.

    • Peter R
    • June 27, 2018
    Reply

    I’ve had hydrocephalus since infancy. 35 years have passed since my last revision. Low grade headaches and mild pain around my shunt are suddenly a problem…
    Are neurosurgeons better at detecting malfunctions better than they were in 1978?

      • Stephanie Beal
      • July 13, 2018
      Reply

      Doctors are better able to detect a malfuntion than they were in the late 70s. They do still have some issues however. I had had a bad shunt out in in 2013. I had numerous issues over the next 5 uears. It wasn’t until a year ago when I started having seizures that the doctors decided maybe i was right and something was wrong with the shunt and replaced it. I havent had a seizure since. It boils down to uou are your best advocate when it comes to shunts. Listen to your body and make doctors listen to you.

    • Jim
    • June 4, 2018
    Reply

    I’ve had congenital hydrocephalus since I was 17 months old. Now, 57 years later I’m still dealing with feelings of being a freak because I can’t find a bike helmet to fit my enormous 3XL head. As much as I’ve accomplished in my life I’m continually reminded I’m abnormal.

      • Jon Warren
      • July 2, 2018
      Reply

      Jim I would love to connect with you. I’m 53 and have congenital Hydro.

      • Erin Whitmore
      • July 10, 2018
      Reply

      Jim

      My name is Erin…I am a 43 year old with congenital hydrocephalus. I would love to chat sometime

      • Stephanie Beal
      • July 13, 2018
      Reply

      In a community of people with hydrocephalus you’ll never be “abnormal” . I personally admire your perseverance.

    • Lydia Toney
    • May 13, 2018
    Reply

    This is a news story near me. I am amazed at the strength of this family to bring awareness.

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