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I somehow ended up on this website and felt compelled to sign up so I could reach out to you all.
I have Chiari and POTS. I was decompressed in 2013 by a chiari specializing neurosurgeon. I have that 'pay it forward' mentality, because I remember being newly diagnosed and running hoops with clueless doctors.
I co-admin a chiari support group on FB with over 1300 members and growing. It is a closed group - so your fb friends will not see your posts, which is nice to have that bit of discreet about it. Our chiari community is bully-free and has so much knowledge, love, support, and understanding.
Please feel free to join us. There is always someone there to help. You are not alone.
you can find us by searching: Chiari is for Real
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