Unfortunately not a lot of doctors know about chiari and are much less well-versed in it. You are most likely going to have to travel to find one.
Also make sure to find out whether you have EDS (Ehlers Danlos Syndrome) it is seen alot in combo with Chiari. It can also cause CCI (cranio-cervical instability) due to the EDS and cause a lot of neurological issues too. Also be checked for POTS (Postural Orthostatic Tachycardia Syndrome) which goes along with this too. Also make sure they do a standing MRI to to check for CCI and an X-ray with your head tilted back as far as you can go and tucked to your chin to look for retroflexed ondontoid bone issues.
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Originally Posted by steph-loves-her-sis
My sister is 19 years of age and four years ago was told she has between 13 to 24mm Arnold-Chiari Malformation. She suffers from Partial-Complex, Tonic Clonic and Absence seizures, black-outs, temporary paralysis, pins and needles in arms and legs, headaches, dizzy spells, metal taste in mouth, stuttering sometimes, neck pain, back pain and other symptoms..we cant find a doctor willing to operate and the hospitals in Brisbane will not help! Has anyone had a similar problem and if so can anyone refer a surgeon that will be able to help or try to help?
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