Chiari Online Support Group

New to group- how active is this site?

I’m just curious how many people actively use this site. It seems a lot of the posts I’ve come across are quite old. Is there a “ roll-call” or something similar that lists active members and their bios? Just curious :slightly_smiling_face:

I am getting the same impression. I am hoping that people are more active on it than it looks though bc it would’ve super helpful for us!

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I’m counting about 30 people active within the last 10 days, although some of them may not be super chatty. But in other words, this is a reasonably active site.


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I have found that it works well to contact folks who have posted previously about information or experiences that are of interest to you. Find out where they are at in their journey! Please keep in mind that Chiari is not a high numbers condition and people do move on from the site. Give and get might not be equal as people with Chiari are not always at a generous stage of their life.

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I try to come on here once a day, look for new post. Look through old post. Feels comforting to me, to know I’m not alone.


Hey, angelface! (“Hey” is “hello” in Southern…) I know that personally, I go to this site several times a week, but don’t respond unless someone has issues with the same kind of Chiari symptom I am dealing with. That’s the thing with Chiari’s - or I suppose with any Central Nervous System damage - the symptoms can be SO varied. Folks on this site have mentioned symptoms I was never aware of. Even so, my symptoms were so many and so varied (from cardiac to gastro-gut…on and on) that I was misdiagnosed for 10 years. Doctors looked everywhere but the CNS. It is wonderful to be able to glean some advice - and/or encouragement - from folks who have similar symptoms.

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Hey Beth! (Completely spoken in my southern accent lol)
Thank you for your response. I am also finding that there are so many variations in symptoms that it is often mind boggling to me. My daughter’s symptoms alone often confuse me and if I was not living through this with her daily, I may find it difficult to believe. Thank you for sharing. May God bless you and give you comfort :purple_heart: