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Kathy’s Story (Chiari Malformation)

Purple RibbonHi, I haven’t really been anywhere with this besides a diagnosis yet. I had to have a spinal fusion, and the doctor that did the surgery did a horrible job. I found another doctor that I thought could help me. Well, he did for a while. Then he put in a pain pump (which I would never want to go without), and it caused a spinal fluid leak which caused the Chiari.

Now, I have nothing to refer to. No one to tell me that I will be ok. All I get from my doctor is, “You shouldn’t be worrying about this right now.” I am at 6.3 mm, and I think I have a right to be scared and worried. I know nothing about this other than what I have learned on the computer, and it has me terrified!!! I haven’t spoken with or met anyone who has this or has been through the surgery for it. I am sooooooooooooooo scared!! I have 2 beautiful teenage girls, and they need me. Will I still be?? If I have the surgery, will I know who I am? Will I know who they are??? I don’t know anything about this at all??? If anyone has been through this and would be willing to reach out to me, I would be so grateful!!!!

Kathy
Michigan
Submitted 03/11/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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One comment

  1. Brigitte Estelle Gaudreault

    Hi Kathy,
    So wish that I could give you a hug !
    keep writing, keep reaching out to others or shall I say your additional new family at fight like a girl . Take notes , keep a journal of your greatest days and best moments also your worst in order to challenge yourself to better understand all your “why’s” and the ” how come’s ” .

    If you are feeling pissed off , change your thoughts to give yourself a better DESIRE in life for you and it will come naturally to you , fight like a girl you will be a winner for reaching your peace of mind you so deserve !!♡♥
    What is fun , great about it, people around you will begin to feel your strength and love you for it !
    Manage yourself and thoughts,
    Rituals define you.  All the results in your life come from your rituals.

    Feeling lonely, write me ♡♥
    with love from Québec, Canada
    Brigitte Estelle xxx

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