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Thread: Arnold-Chiari Malformation

  1. #1
    Community Member
    Join Date
    Nov 2009
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    Long Island, NY
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    50

    Default Arnold-Chiari Malformation

    I am new to this thread and I would appreciate help with my daughter, Jenna's, situation.

    She was diagnosed several years ago with Arnold-Chiari(age 19), with the MRI showing the cerebellar tonsils extending approx. 6 mm below the foramen magnum. Her condition was found when she suffered a brief "stroke" after a chiropractic cervical manipulation which apparently kinked her vertebral artery.
    During the past 3 years, she has had several episodes starting with a "shock to the heart", then a resultant numbness in her arm(s) or face. Jenna then becomes anxious, with the associated feelings of being unable to breathe, and nausea/lightheadedness. The episodes last no more than an hour, usually prolonged due to her anxiety.

    I would like to know if anyone on this forum can recommend a neurologist who specializes in this condition .Jenna rides/trains horses for her living,is extremely physically active. She is aware that her condition is not life-threatening, but the episodes nevertheless cause a great anxiety.

    We are on Long Island, NY, but will travel if necessary. She has been seen at Columbia Presbyterian by a top neurologist, who suggests a low-dose SSRI, but Jenna is reluctant to start on medication unless absolutely necessary. Does diet/exercise play a part in reducing the chances of an episode?

    What are your thoughts on SSRIs for a 27-year old? From what I have read, they may also alleviate her anxiety to a degree. Am I correct?? Are SSRIs the same as beta-blockers - which were also recommended for her.

    Any response would be greatly appreciated. Thank you!

    - A worried Mom (Marianne)

  2. #2
    Distinguished Community Member
    Join Date
    Oct 2006
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    912

    Default

    I hate it when there are no answers so I am going to say right up front that I do not have anything that will help you. I so admire daughters courage and understand her anxiety. I know anones reluctance to add meds as I have that myself. My daughter has seizures so I get a tad anxious myself about her welfare.

    My granddaughter is almost 13 and loves horses and rides in rodeos. To me that takes spunk to handle hugh animals and these girls have plenty of that it seems. I welcome you to the Emotional support forum where there are many nice folks. You may not get anyone familiar with your daughters health troubles but there are fine people who discuss all kinds of thigs are give plenty of support. I hope things go well for you and your daughter. Hope to hear from you again and find how things are going.

  3. #3
    Community Member
    Join Date
    Nov 2009
    Location
    Long Island, NY
    Posts
    50

    Default

    Joy ---
    Thank you so much for your comments and concern. I have used this website for myself for the past 3 years while struggling with CSF leaks, so am aware there are wonderful people in this world who take the time to make others feel better!
    Jenna saw her 4th neurologist today, and I feel she now understands her condition, and will suffer less anxiety with her episodes. This doctor took a full 2 hours of his time to explain her medical condition in detail, and how she can cope. Finally, she got a lot of answers we both needed to hear!
    Thank you again and good luck to you and your daughter.
    - Marianne

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