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Os Odonoiteum

KShishaKKShisha Posts: 9
edited 06/11/2012 - 7:25 AM in Neck Pain: Cervical
Hi, I am 21 years old. My whole life I have experienced the feeling of neck instability and mildly dull pain in my neck. About 4 years ago I went to my Doctor with severe neck pain who told me I was just stressed about college, which I could not continue because I cannot sit over books to read, write, etc. A year later I was in a minor car accident and had an x-ray done of my cervical spine and was diagnosed with Os Odontoideum. The ER Doctor told me I would require a surgery. Upon going back to my regular Doctor they said there was nothing wrong and I could continue with all regular activities, including horseback riding.

Within the past couple months the pain has again become so severe. I cannot sit or stand without literally holding my head up using my hands, let me tell you how hard that works when elbows are not allowed on the table!, or if I rest my head against something. Whenever I move my head I can hear almost like a crunching. My hands and legs are always going numb. My new Doctor has never heard of Os Odontoideum and sent me to a spine specialist, who also has never heard of it.

Does anyone have any similar experiences or any advice about how to talk to my Doctor about it? I cannot seem to find a Doctor who knows what this is, is this condition really that rare? I guess I am just sick of being in pain and am looking for some help.

Thank you for all your time and help.


  • Kshisha

    i was diagnosed with your exact condition. i had no symptoms whatsoever. i had no idea that i even had this condition until i suffered a spinal cord injury at the c1 c2 area. i fell backwards and had numbness from the neck down.

    here is what i have been told. if your os odontoideum is unstable then u need to have it fixed. if it is stable u can with it for a very long time but need to have it monitored.

    mine was unstable. i had surgery. twice. i am now on the road to recovery and doing well.

    i worry about u because u have symptoms. a simple flexion extension xray was able to determine how unstable mine was. u need to get referred to a neurosurgeon or at least a doc who knows what this condition is. if your doctor is unfamiliar with the diagnosis get a new one.

    i had numbness to both hands after my first surgery failed. my c2 slipped and the bone graft did not fuse like it was suppose to. i had a revision and all is great now.

    please PM me if u want to talk more. i can give u my personal experience in detail.

    take care and please find a doc who knows how to care for u.
  • hello i hope someone can point me in a good direction to a decent neuro. i am 42 yrs old but was diagnosed at 38 with what is an os odontoideium vs a postraumatic fracture. i have an unsteady feeling all the time in my neck and severe pain at the base of my skull with certain movements of my neck. i have not found adoc yet to order flexion extension xrays. isnt that how you check for instability?????? well i have also some myelopathy on the left side with hyperflexxia, but last doc said well if we do a fusion you wont be able to turn your head......aah this is the crap i have been going through i have been through all the shots, nerve ablations but to no avail....anyone with a good neuro that knows about this condition PLEASE help me and let me know :) i can barely get thru my days without having to lay down with my best friend the ice pack. thank you..by the way im in new mexico so maybe texas or wherever i dont care at this point juast a knowledgable doctor would be great!! thank you....
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  • sandisandi Posts: 6,269
    edited 06/21/2014 - 4:16 AM
    Have you tried to find a surgeon at a major medical facility near you? They have the best of the best when it comes to surgeons who are more experienced in dealing with complex cases and traumatic injury.
    That's where I would start, and you can usually look them up online to see their specialities, and credentials first, before making an appointment.
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