Craniocervical Instability - questions

Who here has been diagnosed with Craniocervical Instability post-surgery? What symptoms do you experience because of it? What kind of doctor diagnosed you, and what tests were used to diagnose?

I was finally diagnosed 3 years after a whiplash accident and I had my decompression surgery 6 months after my accident. The issues I was having was pain and numbness is both hands, pain and numbness in both feet along with balance issues, and jaw tightness and headaches. Because all my symptons went away when I was lying down, I finally got my NS to order and upright MRI with flexion and extension along with a CINE flow study. The MRI was done in Melville, NY. It showed that my C1 and C2 were out of alignment and blocking my CSF. Then I went to see Dr. Rosa in Rock Hill, NY and he did an atlas orthongonal adjustment on me. Afterwards, it was like a miracle. All my symptons were gone. I then went back to Melville for another CINE flow study that showed every thing flowing as it shoudl be. I am having issues holding the adjustment, but when I am in, it is wonderful.


I am post op and have not been diagnosed, but I think I have it. I’m seeing dr Henderson in MD in a couple of months. As far as I know, it’s diagnosed by an NS- but it’s looking like that’s about as difficult as getting diagnosed with Chiari. I think there a very few NS who really understand instability and actually know how to diagnose it. There is some great info about CCI and how Henderson diagnoses and treats it. He has several videos on the subject.
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Watch everything that mentions EDS, complex Chiari, cranio cervical instability.

My symptoms are return of headache but worse and different then my typical Chiari headache, electrical shocks down the sides of my tongue, incontinence, left side body and leg jerk (it feels like a tic) neck pain, t-spine pain, left arm pain, almost passing out when I turn my head a certain way, a bizarre vibrating feeling in my spinal cord when laying down, non stop neck cracking popping and shifting. The headache is better if I wear a cervical collar that limits my ability to flex or extend my neck.

The imaging needed for diagnosis is upright flexion extension MRIs of c-spine, CT scans of c-spine with 90 deg (?) rotation of head.

What’s your situation?