Carries Chiari Connection

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Chiari Support Group??

Posted by carrieschiariconnection on February 5, 2009 at 11:30 AM

It's been a rough year, and with that said I've thought about the possibilities of there being many people in the Ohio area that might be feeling the same way as I have. I would like to know how many people in Ohio would be interested in having a Chiari Support Group once a month (more if necessary) in Ohio...which will probally change from time to time to accomodate others who have trouble driving to the support group site. I would like to see how many people we can get together and then talk about when, where, and the details. Thanks so much!

I think that I would benefit a lot to be able to share my concerns and how helpless I tend to feel from time to time. Chiari, in my opinion, is one of the most misunderstood disorders where doctors and health care providers lack so much knowledge and therefore cannot honestly give us the feedback and support that we need that we can potentially find with one another.

Let me know....and you can email me as well: Carriebear31@msn.com

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6 Comments

Reply carrieschiariconnection

11:38 AM on February 05, 2009

P.S. I am aware that there is a support group in the Cleveland area..but I am more closer to Columbus and Dayton....and I would be happy to point you in the direction of the support group in Cleveland area (upon making sure they are still having meetings). Thank you!!!!

Reply Susan Dowdy

03:36 AM on February 24, 2010

My Mother called me and told me about this site. I was diagnosed with MS in 1992 when i had a stroke at age 22. In 1998 I was diagnosed with CM, after I agreed to the spinal tap. I was told the only way to relieve the presure on my brain was to let them cut a portion of my skull out. I suffer with headachs daily. I'm not taken their medication because I suffer from heart damage now because of the doctors. I would like to know more about this desease. Thanks Susan Dowdy

Reply Carrieschiariconnection

08:50 AM on February 24, 2010

Hi Susan, We are hearing more and more about Chiari on the internet and even on TV these days! It's amazing how much attention we are finally getting. I think you would be amazed if you checked out the links on my page here like, Conquer Chiari. There are also a TON of Chiarians on Myspace and Facebook! Everyone is amazing! There is also a Yahoo groups support group! (actually there are 3 that I know of personally) Let me know if you need more help in this area~! Good luck and stay awhile to read more!
~Carrie

Susan Dowdy says...
My Mother called me and told me about this site. I was diagnosed with MS in 1992 when i had a stroke at age 22. In 1998 I was diagnosed with CM, after I agreed to the spinal tap. I was told the only way to relieve the presure on my brain was to let them cut a portion of my skull out. I suffer with headachs daily. I'm not taken their medication because I suffer from heart damage now because of the doctors. I would like to know more about this desease. Thanks Susan Dowdy

Reply rebecca robinson

05:44 AM on April 29, 2010

I was diagnosed this past nov. I feel so alone , i live in CA , and there is nothing out here like support groups or even knowlege of this disease existing . Im in alot of pain in my neck and back of my head right now , I kinda want to go to the ER , but when I went the last time the ER doctor didnt even know what chiari was .

Reply Carrieschiariconnection

09:28 AM on May 01, 2010

Rebecca,

Don't feel alone because out of everything....this is furthest from real. There are hundreds upon hundreds of us out here! YOU ARE NOT ALONE! Ok....now, for support....I can tell you about a couple different ways to find some really great support. First, try FACEBOOK because there are wonderful Chiari members on Facebook who are ready to make contact with you and talk. Then there is Conquer Chiari, WACMA, Chiari connection, and many many more. Try googling Chiari and you will find a thousand different blogs! Believe me hon, you will be overwhelmed with responses! Let me know how it works out! Thank you so much for stopping by my website! Im so happy when someone can get "connected" with another Chiari person for support!
Hugs!

rebecca robinson says...
I was diagnosed this past nov. I feel so alone , i live in CA , and there is nothing out here like support groups or even knowlege of this disease existing . Im in alot of pain in my neck and back of my head right now , I kinda want to go to the ER , but when I went the last time the ER doctor didnt even know what chiari was .

Reply Sarah

11:04 AM on July 22, 2010

I found a support group at the Cleveland Clinic, I need to call and see if it's still going on. I am in the Toledo area, so it's about a 2 hr drive for me but I would be willing to do it. I feel that I would benefit from a support group because my family and friends don't understand what I'm going thru and I feel very socially isolated. Let me know if more people are interested because I am. Thanks!