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how was it like for you when u first got diagnosed with chiari

    • lisalocket


      I was more heart broken when my daughter got diagnosed. I felt like it was my fault for giving her this condition. She has to wait another year before she sees her consultant as she was 11 when started with migraines and I insisted on mri.

    • Jigglebean


      I found out when I was 13. There were signs at younger ages but the doctors didn't know and just kind of brushed it off. It started with temple pain everytime I coughed or sneezed, and a tickling sensation in my throat when I would clean my ear. When my sister would part my hair for braiding I would complain about it being off centered and I realized later on it was because I was losing sensation on the left side of my scalp. A few years later I'm in 8th grade and I'm dropping my cereal bowl out of my hand twice in one week. I went to school one day and thought one of the lights were broken but my classmates didn't see anything odd so I went to the nurses office and found out my blood pressure was abnormally high. I went to the hospital and and after a few test and an MRI, I got my diagnosis. I began to develop a limp shortly after, just in time for surgery 🙃 Being that I was only 13 I thought that if I made it out of surgery alive it would be a cool story to tell my classmates, but years later the pain says otherwise 😅 I've had ups and downs, still trying to manage and find relief after 12 years. How are you handling it?

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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night sweats





Anxiety (Including GAD)