Re: Help!!
Have you consulted with a neurosurgeon? Another name for Tonsillar Ectopia is a Chiari Malformation. I am not saying that is what you have...just that it is a possibility, and as such, you will need to find a highly specialized neurosurgeon. This is a very complicated problem as it involves tissue that is located in or near the brain stem in the lower skull. If surgery is required, it is a very technical surgery that most spine surgeons are not trained to perform.
In a Chiari malformation, the cerebral tonsils (located in the lower part of the cerebellum) hang down through the opening at the bottom of the skull. This prevents the cerebral fluid from flowing easily into and out of the spinal canal. It causes symptoms like dizziness, ringing in the ears, loss of balance, headache, choking, limb weakness and neck pain.
Because it is somewhat rare, it is often misdiagnosed. (The only reason I knew about it is because my husband's longtime secretary complained of headaches for years before she was diagnosed.). You may be able to find a neurosurgeon/specialist in the Detroit area or at U of M who can help you. There is a well-known research and treatment center in Milwaukee called the Wisconsin Chiari Center. They have an informative website where you will find info on the various types of Chiari, diagnosis and treatment options.
Obviously I have no way of knowing if you have this condition...but it would be worth looking into it since the diagnosis is missed by so often!!
Good luck and let us know how you are doing.
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