Discussions By Condition: Rare Disases

This test result something to worry......

Posted In: Rare Disases 1 Replies
  • Posted By: Anonymous
  • December 14, 2009
  • 03:43 AM


I"ve been having headaches, nausea,,, and my legs don't work right. They hurt,as well as my feet too.

I been like this for a long time,,but am getting worse as the months go by.
DR. sent me for an MRI, got it done on Sept.3rd,,nearly 4 months ago.
I gota letter from my neurologist,,,saying :

MRI result showed some mild tonsillar ectopia. The cerebellar tonsils protuded through the
foramen magnum for about 4.9 mm. He said there is no kinking of the CC junction and the foramen magnum,,and doesn't look to be excessively tight.

Neuro also said that he couldn't link this MRI finding to match my symptoms,,espeically to short-term memory or concentration difficulties..

He also said that this condition I have has been long standing...and is of no clinical concern at t his point...

However,,,,,,, I am worried ,,,some tell me that I may have Chiari,,and should have another opinion...with headaches in the back of my head getting worse..everyday headaches too.
Also back ache is always bad.

Can someone please help me understand this? I'd really appreciate any comments....

Thankyou in advance,,,, Jen

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1 Replies:

  • Yes. This is Chiari I malformation. It is a condition present at birth but doesn't really show until the teen years. Have you been evaluated for Ehlers Danlos Syndrome? Chiari is extremely common in EDS. Also make sure you are evaluated for Craniocervical Instability. It is scary but in the hands of a great neurosurgeon, you will be fine! ~~ From experience!
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