Carries Chiari Connection

Blog

« Back to Blog « Older Entry | Newer Entry »

Chiari Support Group??

Posted by carrieschiariconnection at 11:30 AM on February 05, 2009

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

Categories: None

3 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