Hi
I'm all new to this but would love to hear form anyone who has a similar story to mine...I would also be very interested to know if the term Tonsilar Ectopia is more widely used in the US than it is in UK...Over here it is used to define a 'normal hernia which does not cause symptoms!!' I would love the 'Specialist' to spend a day with a constant bouncy head, dizziness & walking like an old drunk!!!!
Helen,
I also have a 4mm herniation. As far as I know, Tonsilar Ectopia is just another way of saying Chiari Malformation. I also have Syringomyelia, which is a syrinx/cyst of spinal fluid in your spine. Many inexperienced doctors still classify a herniation of less than 5mm as insignificant. New research has proven this wrong. You can have a so called small herniation and still have lots of pain and symptoms. Have you had a CINE MRI to check your flow of CSF? Have you had a full spine MRI to check for a syrinx? If not, you should ask for these tests. Also, you should see a Neurosurgeon (NS) that is experienced with Chiari. There are lists of patient recommended doctors…You can find links to these lists on our resources and doctors page. I hope this helps:)
Crystal
hi
crystal said it all
she gave you the same input i would
good luck and keep us update
hey crystal/ you are always ontop of things xoxoxo
Ahhh…Thanks Lori!!! 
hi
crystal said it all
she gave you the same input i would
good luck and keep us update
hey crystal/ you are always ontop of things xoxoxo