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.

35 Comments for : Those Battling Hydrocephalus Come Forward to Share Their Stories
    • Gwynne Constantino
    • February 7, 2019
    Reply

    My husband has hydrocephalus and he is 57. He was diagnosed in 2001. Now he may need a shunt and I’m a little scared for him. Will he be able to still work, function, etc…

    • Judy seris
    • February 1, 2019
    Reply

    I am very concerned,because my 64 year old sister has had four shunt revisions in the last two years.She has not recovered the way she had when she had a revision about ten years ago.two years ago she was walking was at home with her husband,now she is in a wheelchair,can’t walk,has a bladder catheter as well.Why do the shunts break down now so often?What can we do to ensure her latest revision stays working?

    • William Bradley
    • November 26, 2018
    Reply

    My name is Bill. I am nearly 78-years old and had VP shunt surgery on November 1st. My gait and balance have greatly improved. The headaches are gone. I finished the NY Times’ crossword (on-line) this AM without cheating. However, frequent trips down the hall persist.

    • Reply

      Bill – Congratulations on the great progress you’ve made so far! My neurosurgeon warned me that my gait and balance would likely improve faster than the bladder control. When I told him he was right on that score and what can be done to hurry it up he advised seeing a urologist. I didn’t and eventually the urgency decreased, but it’s still not great. I would discuss this lingering symptom with your NS and then if he agrees seek out a urologist.

    • Somto
    • November 15, 2018
    Reply

    My 3month daughter was just diagnosed with congenital hydrocephalus. A shunt was passed through the neck to the stomach to pass the excess fluid. She’s a very active baby. I have great hopes for her.

    • Nancy
    • October 11, 2018
    Reply

    My daughter was diagnosed with hydrocephalus had a VP shunt when she was 3 weeks now she is 11 weeks she seems well but am scared please help

      • YSD
      • October 28, 2018
      Reply

      Nancy: Our prayers are with you and your family. I won’t say that “please don’t be scared”. It is natural to get scared. We can say that you are not alone. We were in that boat and we still are in the same boat. It is hard to see your new born child go thru this. But, look at the brighter side. We could have lost our child. But, by God’s grace, our son is laughing and smiling. That gives us the joy. So, please have faith. Please work with your social workers and doctors. And do not lose hope!

    • Liam Morrid
    • October 2, 2018
    Reply

    I had adult hydrocephalus diagnosed at 61,after a misleading Early Onset Parkinson’s at Leicester General
    I’m now 6 month on from my op at Adenbrooks Cambridge and have felt So Much Better and Able
    There are nuisances,and I still await permission to drive again,but have nothing but praise to the medics and staff involved.
    Liam 98% there

    • Victoria
    • September 26, 2018
    Reply

    I have had a shunt since I was a baby. I am only 17 yrs old. I have had only 3-4 surgeries including my revision in 2012. I still deal with headaches and every now and then, headaches. Even though it’s terrifying to me when my head hurts so bad and I’m really dizzy, I feel blessed in a way.

      • Georigna Mora
      • October 25, 2018
      Reply

      Hello Victoria!!!
      My daughter just had Hidrocefalia. She’s 16 years old. She continuously has headaches still. Could you please tell me a little bit more about your experience. She’s worried and she does not knows anyother teenager with her situation.

    • letizia costa
    • September 21, 2018
    Reply

    I am a 78 yr old woman who was operated on Oct 0f 2016 for Hydrocephalus and have a shunt in my head! It has taken me a long time to recover my balance and to feel normal again! I am surprised that my Neurosurgeon has not reached out to me since I really don’t know how I am supposed to be feeling or if there is a chance that I could have a stroke! I have lost hearing in my left ear and has ringing! Still, have bouts of os incontinence! Would love to hear from others in my age group that are going thru this!

      • Jenny Miller
      • November 12, 2018
      Reply

      I was diagnosed at the age if 47. I am now 60 I have had 4 revisions. My shunt is from A company that has not perfected them. My new Neurosurgeon has said he will eventually put a new don’t in that I don’t have to have stays and ct scans every time there is an issue! I to suffer from headaches, hearing loss and vision problems. I have short term memory problems. But I live life as full as I can. I an still able to enjoy my daily life my family and grandchildren. I keep a positive attitude and just know that someday they will find a cure for this disorder. I pray your doctors will help you and the Lord will keep you strong.

      • Bill Bradley
      • November 18, 2018
      Reply

      I am 77-years-old and had VP shunt surgery November 1, 2018. Overall I feel infinitely better. Gait much improved. Headaches gone.

      • Sheralyn Foster
      • February 3, 2019
      Reply

      Hi, I believe my 82 yr. old mother is suffering with Normal Pressure Hydrocephalus. So, I am heartened to hear older people are able to have treatment. My mother was tested a year ago for Parkinson’s and this was discounted. We are now waiting for a referral to see a Neurologist but it is such a battle! She seems to be deteriorating, she is virtually housebound and even taking her out in a wheelchair she feels like she is falling! I have been reading up on NPH a lot and as my Mother developed Urinary Incontinence a few months ago this led me to the symptoms which are identical to hers. Several years ago, Physios mentioned ‘abnormal gait’ then she got slower walking, shuffling, and now it’s as if she cannot lift her feet and when she gets going she freezes. She cannot manoeuvre easily in and out of a chair even with people either side of her. Until now, I have gone along with G.Ps etc . I even put it down to severe anxiety and am feeling so guilty as I know this is not down to ‘normal ageing process’ Over the last few years seen various doctors- one of whom wrote she was ‘deranged! Dementia was suggested by a very young Dr. Mentally my Mother is excellent apart from occasionally she seems a little slow processing thoughts!? I am 99% convinced it is NPH and desperate for a diagnose and hopefully some treatment. HELP

    • 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.

      • YSD
      • October 28, 2018
      Reply

      Dixie: You are a brave mom. Our prayers are with you. We have a son who is 7 yrs old. We feel lucky that he is alive and smiling. I have a question for you. How was your son academically? Did he get a job? did he have normal life and did he get married? Only reason, we ask is to know what support should we build for our son when we are gone from planet earth. Appreciate your response. Thanks in advance.

    • 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.

      • Roxana vortisch
      • October 2, 2018
      Reply

      Hi
      My name is Roxana I live in Ecuador recently my 1.3 years old baby girl was diagnosed with hydrocephalus she was born with a big head but de evolution since she was born is normal I don’t know what to do, I’m not sure that is the correct diagnose, the doctor propose to insert de valve in to her head to drain the liquid but I’m afraid of the consequence can you tell me about your girl, I will thank you a lot

        • YSD
        • October 28, 2018
        Reply

        Roxana: You are a brave parent. We really appreciate you reaching out to the community. Our son had a similar problem when he was 3 days old and we had to insert a shunt which is kind of valve to bypass water from head to his tummy. We were scared. But, we had no option as we would have lost our child. Now, our son is 7. He laughs and giggles. He is an average student but he is great in geography, spellings. His eyes are squint but otherwise he is fine. In studies, we are finding that he needs lot of repetitions to improve his scores. But, we are fine with that. Hope you take bold decisions after consulting your doctors. Stay in touch with social workers and nurses. All the best.

      • YSD
      • October 28, 2018
      Reply

      Abbe: You are a brave parent. I am glad to hear that your daughter led a normal life and has 2 kids. We have a 7 yr old. He faces challenges in critical thinking. He is excellent with repetition e.g. maths or vocabulary. But, if some new topic or logical/ critical Qs are asked, then he stubles. I would like to understand how was your daughter academically? What kind of support did you create? did your daughter graduate and had a stable job? We are worried and trying to create a support for our kid. Thanks in advance.

      • Sue
      • November 27, 2018
      Reply

      I am in the position where my shunt is on the left hand side, this is my first experience of things going wrong I had my shunt put in 1974 when I was 6 months old 44 years later I have got told that the shunt doesn’t work no more, but as you the shunt is decalcification,broken and is in tiny pieces they wont operate as it is to dangerous,,im in constant pain as the shunt hurts, neurosurgeon cant do anything so seeing a neurologist for migraine what a joke

    • 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.

        • YSD
        • October 28, 2018
        Reply

        Stephanie: You are a bold person to share your experience. We have a 7 yr old kid. Need to understand what kind of issues/challenges you faced academically? Only reason we ask is to build a support structure for our kid. Our son is facing challenges in critical thinking. He is average in maths and reading. Appreciate your response. Thanks in advance.

      • YSD
      • October 28, 2018
      Reply

      Peter, Thank you for sharing your experience. I have few Qs. We have 7 yr old son with VP shunt. I want to understand how were your school grades? What kind of help you received? The reason we ask is to help our son. We are finding that our son needs lots of repetition. Also, he takes more time to solve problems than other kids. But he is good in Geography and spellings. did you complete your graduation? Did you have a stable career and job? What kind of support structure should we create for our kid? Thank you in advance.

    • 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.

        • YSD
        • October 28, 2018
        Reply

        Hi Jon: We have a 7 yr old kid. Need to understand what kind of issues/challenges you faced academically? Only reason we ask is to build a support structure for our kid. Our son is facing challenges in critical thinking. He is average in math and reading. Appreciate your response. Thanks in advance.

        • Franc Cazares
        • October 29, 2018
        Reply

        Hi Jon. My name is Franc Cazares and I’ve always wondered why I had to find XL caps to wear. Them I remember as a teen I was told by my dr that I have enlarged ventricles. I’m now 53 and just had another MRI and have been diagnosed with hydrocephalus.

      • 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

        • YSD
        • October 28, 2018
        Reply

        Hi Erin: We have a 7 yr old kid. Need to understand what kind of issues/challenges you faced academically? Only reason we ask is to build a support structure for our kid. Our son is facing challenges in critical thinking. He is average in math and reading. Appreciate your response. Thanks in advance.

      • Stephanie Beal
      • July 13, 2018
      Reply

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

        • YSD
        • October 28, 2018
        Reply

        Stephanie: I am assuming you had a shunt. My apology if I have misunderstood. We have a 7 yr old kid. Need to understand what kind of issues/challenges you faced academically? Only reason we ask is to build a support structure for our kid. Our son is facing challenges in critical thinking. He is average in math and reading. Appreciate your response. Thanks in advance.

      • YSD
      • October 28, 2018
      Reply

      Jim: You seem to have lived your life! We have a 7 yr old kid. Need to understand what kind of issues/challenges you faced academically? Only reason we ask is to build a support structure for our kid. Our son is facing challenges in critical thinking. He is average in math and reading. did you have a stable career? did you settle down and had a family? Appreciate your response. Thanks in advance.

    • 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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