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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.

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  1. 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. 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!

  3. 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!

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