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Craniovertebral Junction Instability

I have cranio vertebral junction instability caused by a ruptured alar ligament. This is also referred to as cranio cervical/ atlanto axial instability. My head is loose where it attaches to my neck. I started having debilitating symptoms in 1997. After going to physicians for twelve years (2009) and receiving no diagnosis I sat down at the computer and started researching positional cervical myelopathy. It took about six weeks to make a diagnosis. I tried for two years to get a physician here (home) to talk about this condition, with no success. During this time I researched all things CVJ instability. I came across a study done by two physicians (PhD's) in Finland who did a published study of controls (healthy) versus patients. I went to Finland in 2011 and the radiologist confirmed my original diagnosis. I again went around here (home) for two years and no physician would discuss the condition. In 2013 I was only functioning about two or three days a week and was waking up in the middle of the night having stopped breathing (central sleep apnea). I acquired a Freeman Manufacturing Company noninvasive halo vest (#801) to sleep in. In the first three months I reduced my episodes of CVJ instability during the day by seventy-five percent, and after fourteen months of NHV trial and error (fitting, positioning, adjustment) I have not had a stop-breathing episode. I was now able to identify almost all of my episodes during the day (cause and effect). In an effort to help others I wrote a case study of my experience (1/3rd my medical history, 1/3rd research,1/3rd muck-raking) 83 pages, plus an addendum 15 pages, taking two years to complete (2016). I sent twenty-five copies of my case study to every cervical spine surgeon here (home) and received no reply. I have been sending it all over the world to every noted cervical spine physician of note (those who have published papers on cervical spines). Please join the conversation if you are in a similar situation. It is like I am in a small rowboat, out in the middle of the ocean, alone.  


Joe43

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