• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. RobeAnJa

    Subluxed axis (C2 vertebre) in neck confirmed. What now?

    My axis (C2) is subluxed, rotated and misaligned. It was confirmed by supine MRI. I met a neurologist who think this is the root to my symptoms. She said I would probably not be a candidate for surgery since my symptoms are not severe. Since I got covid-19 in april last year I have mild POTS...
  2. J

    #MEspine hashtag

    Just FYI, I’ve started a new hashtag on Twitter, #MEspine: https://twitter.com/hashtag/MESpine I know a lot of folks on PR aren’t on Facebook, where a lot of the EDS, tethered cord, Chiari, CCI/AAI, etc. groups are. Hopefully this will make it easier to follow research and patient stories. Most...
  3. Jwarrior77

    Has anyone got a Digital Motion X-ray (DMX) to look for Neck Instability?

    Has anyone got a DMX to look for CCI, AAI, or any other instability of the neck? We're you diagnosed with it or had to get other scans like an upright MRI to find it? I'm scheduled to get one soon. Does anyone know if the Dr. Gilete, Dr. Henderson, or Dr. Bolognese look at or accept those...
  4. tiredgirl928

    My MRI images for CCI/AAI/Chiari/tethered cord

    I just had my upright MRI completed and I was wondering if anyone could offer some insights :) I have numbness and weakness all over, but it is worse on the R side (along with fatigue, insomnia, GI issues, and PEM). I have not been evaluated for Ehler-danlos, but I do have noted hypermobility...
  5. Dan M

    Scheuermann's kyphosis surgery.

    Hi all. The curve in my spine makes my M.E. symptoms a whole lot worse than they otherwise would be. However after recently reading accounts about CCI/AAI I wonder if my spine is not just an exacerbator of my symptoms but an actual cause. Just wondered has anyone had corrective surgery for...