Retroflexed Odontoid

I have CCI and a retroflexed odontoid.

I have a strange question - has it been anyone's experience that their odontoid moves? One doctor says that my odontoid isn't that far from my C1 but . . . I tried explaining that it moves around and that maybe on the day of the MRI it was in a different position. But they just don't get it.

I tried explaining to the doctor that I have good days and really, really bad days. But they just don't get it.

Maybe I'm the only one . . .

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I have a retroflexed odontoid as well. Pre-surgery on bad, bad days, I could tell you exactly where the center of my head was based upon the pain I was experiencing due to the odontoid's position. I am hypermobile in my spine, so yeah, I hear ya!!

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So I guess that I'm not crazy? Thank you!

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It might be more accurate to say that with loose ligaments, it's possible for the odontoid to slip out of its position inside the C1 ring. The odontoid "peg" of C2 is supposed to be held tight against the inside front of the ring by the transverse ligament. If that and/or other ligaments in the area get too loose, then you have instability of C1/C2. This allows the otondoid to impinge on the upper spinal cord / brain stem, causing varying degrees of pain and neurological dysfunction.

It's reasonable that a lying-down position allows the odontoid to slip back into place, and only an MRI taken while upright and/or in a non-neutral position would expose the odontoid out of place.

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Exactly. But my local hospitals don't have Upright MRIs - and they don't see the need to get them for "such a rare condition."

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I'm hoping that you can get to an Upper Cervical Chiropractor who uses the Atlas Orthogonal Method of adjusting C1 and C2. This is a very precise adjustment by an instrument that is completely painless. It helps me want to keep living. It truly is my miracle treatment. I could not walk or talk. Now I can because of this treatment. There is also another method that is done by hand. In my opinion less precise. Although it did get me through the agony until I could find an Atlas Orthogonal practice. The Xray technique and the measurements to determine the degree of adjustment needed is the same in both techniques. There are very few of these specialists in each state. You can go to the website for Upper Cervical Advocates by search and check for these practices by state. This advocacy group is very helpful and founded by an incredible couple who have helped me many times by email and phone. They have written books which are helpful as well. One of their books is titled, -What Time Tuesday? by Dr. James Tamassi. He has an incredible story of how this technique saved his life. They have become good friends to me. I pray you find the relief and help that you need. I will be writing a book soon about my medical journey, including much info about this specialist chiropractic method that saved my life. Blessings to you!

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Atlas Orthogonal helped me confirm the ligamentous laxity. After one AO treatment, symptoms were MUCH better. But then when I turned my head and bent my neck over in a normal way, the vertebrae immediately fell out of place again.

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My odontoid is pushing into my brain stem compressing it, cause major issues, which surgery is going to be performed when I have my other surgeries on my brain and spine on the 20th with Dr. Henderson.
If you look up "chiari eds mystery diagnosis" on YouTube that girl has the retroflexed Odontiod too.

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My odontoid also compresses my brainstem; it's a horrible condition. Yes, I've seen that episode of "Mystery Diagnosis" and it was really helpful to me.

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