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Stephanie’s Story (Chiari Malformation)

Hi, my name is Stephanie. I was diagnosed with Arnold Chiari Malformation 2 years ago, due to real bad migraines.

A few months ago, I started getting dizzy. My legs and arms go numb, I have blurred vision, depression, and anxiety. My shoulders hurt, and my face feels numb at times. I went to the doctor, and they sent me for an MRI. I got a call from the doctor a week later, saying I need to go see a neurosurgeon because I have a cyst in my spinal chord.

I’ve seen the neurosurgeon. He is sending me to get another MRI that shows CSF flow. Then, he said he is sure I will have to have a surgery called decompression surgery on my brain.

I’m scared, but I have 2 awesome kids and a great husband, so I have to do it.

Submitted 01/13/2017

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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  1. Rebecca

    Hi! My daughter who is now 14 had decompression surgery when she was 5! She stayed in the hospital for a week. She still gets headaches but all of the other side effects of Chiari malformation are gone!

  2. Danielle

    Hi Stephanie,
    I had the surgery about 12 years ago, when I was 28. Mine was a long recovery process, but my symptoms were t0o painful and debilitating to bear. Surgery was the only option. I am thankful that the surgery worked and I have been symptom free for over 10 years! I’m glad you have family to help you through this and hope that you are patient with yourself and your recovery. I truly wish you the best!

    • Cindy

      My name is Cindy & I have been thru 3 surgery’s for Arnold Chiari & syringmyelia. I’m looking for a person that would be interested in talking to me about it. My email is
      I feel like I need a support group of friend that knows what I’m going thru.

  3. Diane Smith

    Hi Stephanie,
    I just wanted to touch base with you as my heart went out to you. I don’t have C.M. but I have a host of other things. I just had a Cervical MRI on 2/13/17 so that it would already be done once we found a Neurologist who could treat my migraines, which I have daily & test me for suspected M.S. I already had a brain MRI that shows lesions on my brain. I too got a call 2 days after my cervical MRI saying I have bulging discs & need to see a Neurosurgeon. I also live in Arkansas & wanted to let you know that if you need to talk, I’m here anytime! Hang in there!

  4. Veronica

    I had a violent episode of vertigo and hospitalized.
    MRI performed and nothing found. Referred to ENT, hearing testing completed, and lost found. Then the tinnitus started. Had another violent episode in September 2016 and diagnosed with Menieres. Had surgery in October 2016. Then the headaches, neck pain, zaps in head and behind the eyes and tingling in body. I’ve had numerous MRI and CT scans and nothings coming up. Are the signs of this condition noticeable ?
    How do I get tested for chiari malformation ?

  5. Linda Zehler

    I wish you the best of luck and am praying for you. My daughter, Stephanie Congo, has a yoga class specifically for Chiarians. She had a traumatic brain injury a few years ago and since she was already a yoga teacher, she branched into Therapeutic Yoga and received a grant to teach TBI yoga. A Chairian took the class and was so thrilled that it helped her that she and Stephanie developed a gentle chair yoga class for people with Chairi. At the end of the zoom class is a chance to talk with others about experiences or what has helped. For more info about her class, you may contact her at: Stephanielovesyoga at

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