Basilar Invagination

[kittygr]

I've been diagnosed with having Ehlers-Danlos, a Retroflexed Odontoid, and a Basilar Invagination. It's the third condition that scares me the most; I wish I'd never googled it. Does anyone have any knowledge or experience about Basilar Invagination?  Thank you.

[selmaS]

  Do u have a Chiari specialist?....Will ur ins allow u to travel to get to one?Do u have limitations to where u can go?

[kittygr]

Not sure. I haven't had a Cine MRI or an Upright MRI done yet, but I think that these tests might show something. Because I have EDS and my neck is very bendy, a lot of things keep getting missed on standard tests.

[selmaS]

  Hi and welcome to the Chiari forum.

I was also told I have a retroflexed odontoid as I understand this as well as ur other issues ....is a EDS issue.

Many also  have cerviocranial instability.

So, u were not dx'd with chiari......?