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Craniovertebral instability rare and often missed

My child has neck pain. A pain in throat like choking if he extends neck. A popping noise heard by others if he rotates head. "Creep" is what doctors call it .
He has had pain behind knees. He has incomplete bladder  emptying at times. 
He has ant bite pains to shoulder area.

We went to 6 doctors and an ER over last 3 yrs following and after the fall onto hard surface that tore a capsular ligament in his neck. Every doctor said its nothing. Disregarded symptoms. Even told to ignore it and it will go away.
I want to add my son had a regular static MRI that showed the ligament damage initially and a  1 yr repeat plain static MRI showed only tonsilar ectopia. I mention this too because I was wrongly told that it could not be related to injury. But now I know that my child has craniovertebral instability and in reading about this condition learned it can cause cranial settling and that can cause chiari and or tonsilar ectopia.

I sent his records to an excellent doctor in New York as a last attempt to get answers. He listened and ordered a flexion extension MRI.  I have read that it is the gold standard test for diagnosis of craniovertebral instability. 
The radiologist read the flexion extension MRI as normal but did not measure the grubbs oaks line or the clivoaxial angle. These are important if craniovertebral instability is suspected!
My son's neurosurgeon made the measurements and concluded that my son has the rare craniovertebral instability. 

I decided to write this because of all the time we wasted at many doctors offices. Going through useless x rays and being treated like we were just crazy! I hope this will help others 
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Comments

  • SavageSavage United StatesPosts: 3,491
    Hello Kelly !
    Thank you for sharing your story.
    It is not easy to watch our child suffer.
    It is not easy for so much time to pass before validated with diagnosis.
    But you never ever gave up!

    I am very glad for your son being in good hands now.
    I wish your son the very best...and you too mom!
  • I know cervial spine unstable is very important and it can cause some issue that even worse than just pain.
    So how to do the unstable? 
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