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Chiari Malformation Community
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Chiari walk!

Just wanted to share my experience with all of you.

I went to my very first chiari walk this past Saturday. As soon as I walked in I felt so understood. And was surrounded by fellow chiarians who can truly grasp the life I live. I was overwhelmed with emotion at first but quickly felt empowered and strong. There weren’t as many people here as I was expecting, which is kinda sad but it’s a start!

After going through surgery no. 2, I really needed the boost and I’m so glad I went!

I would encourage all of you to go at least once to experience it if you can, you won’t regret it!
1 Responses
620923 tn?1452919248
COMMUNITY LEADER
Kerri !! I am so glad you got to be amoung other Chiarians.....I went to a Chiari COnference this summer, and was not impressed with the turnout....I went in '07 and it was packed....so sad, but Center City Philly is pricey, so I understand that too. We do not have any walks in my area and I am not able to set one up at this time, but am looking into other ways to help promote Chiari awareness.
7 Comments
Hi Selma! I’m so glad I went also. And I’m planning on going again next year. It was and hour and fifteen minute drive for us. And not too many people..... does it seem like instead of spreading awareness it’s kinda fizzling? Seems like it to me at least.

Sad to hear your conference didn’t even have a crowd. I feel like I need to do something to change that.... but what
I know what you mean, even the community here was different a few years back.....there were always conversations back and forth,, prayer threads to wish others well....but no one comments unless they are asking a question anymore.....I would love to get this forum to be more of a community again.

I am also wondering what I can do....I have a few ideas and waiting to hear if the org I made the suggestion to wants to work with me on it....

All we can do, is tell everyone we see about Chiari....as it does appear to be fizzling out....sad
I agree Selma. I think this used to be really involved and now seems very quiet
Yes, so sad...people do not use this the way it use to be used....and I think that is going to be a problem further down the road....we just are not connecting on a level we need from others in thesame circumstances.....I just hope it reverts back to the way things were.....
Yes I’d like to see it that way again. Even if the topic wasn’t chiari related. It’s nice to just chat. I do understand needing to take a break from thinking nonstop about it. I’ve had to that myself. But I find myself right back here again
Hi Kerri and Selma, Kerri I’m glad you were able to join in a chiari walk and spread awareness. I think chiari is very under diagnosed and misunderstood and anything we can do to spread awareness is helpful. This forum is great but yes, I do see a dwindling of activity. I too am to blame. It became too much for me for a while and I had to step away. I have good news though and will make a separate post in case anyone followed my story which may be similar to mine and wondered how I turned out. I had a fusion from occiput to C2 and am doing great! I hope you are both well.
Hi lasel22...glad to hear from  you.....most that develop issues tend to back off of the forum and don't seem to want to talk about the issues as they are just overwhelmed.....but I feel talking can help calm those fears and anxietites . To each thier own and they know what they want and need.....hopefully they will all see that being together  and sharing can really help.
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