Today’s Topic: Chiari Malformation « Creative Procrastination

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Today’s Topic: Chiari Malformation

April 3, 2009 by No One of Consequence

Hello everyone! Today’s topic is Chiari Malformation. Post your knowledge and experiences here. Post your questions too for that matter. I have been searching the number one yahoo support group for information but no talks to each other over there. It seems like kind of a lonely place. I would love to hear from you! I’ll talk back. Promise.

Posted in Procrastination Posts | Tagged brain, Chiari, Chiari Malformation, MRI | 8 Comments

8 Responses

on August 14, 2009 at 11:22 am | Reply Lace

Conquer Chiari is a great site to learn all about Chiari ~ http://www.conquerchiari.org/index.htm ~
on August 14, 2009 at 9:02 am | Reply OtheteSenna

What’s up, is there anybody else here?
If there are any real people here looking to network, leave me a post.
Oh, and yes I’m a real person LOL.

See ya,
on May 18, 2009 at 8:12 pm | Reply razzle

Yes http://www.asap.org is a great place . there are several yahoo groups that talk. come join us at asap .
on April 11, 2009 at 7:20 pm | Reply Toni

Hi Susan,

My decompression surgery is 10 days from today on April 21st. I agree with Jan that ASAP.org is a great place for information. Also, the patient education videos on chiariinstitute.com are great. conquerchiari.org is a good resource as well.

I do hope you find the information you are looking for and that you find some relief. Good luck!

Please feel free to email me if you have questions.
on April 10, 2009 at 9:13 pm | Reply Carleen

Hi Susan! I’m a Zipperhead (Chiarian whose had decompression surgery) who also blogs about life with Chiari. In addition to blogging, I created a Squidoo lens about the condition; it’s a good place to start if you’re searching for information.

http://www.squidoo.com/chiarimalformation

Since you’re newly diagnosed and I’ve been around the block a few times with Chiari, let me know if I can answer any questions for you.
on April 4, 2009 at 5:57 pm | Reply No One of Consequence

Good to hear you are recovering Jan and thank you for the link. Lacie, a Chiari Malformation was recently noted on an MRI of my cervical spine. I had been experiencing a lot of pain in my neck and arms, pins and needles in my arms and legs, numbness in my throat along with headaches and vision problems. I had a follow up brain MRI on Wednesday and am now waiting for the results. So I am researching the topic and trying to find out why some doctors take the condition seriously and others have “don’t worry about it” attitude. Thanks for the link. I will visit your blog!

Susan
on April 4, 2009 at 12:09 pm | Reply Jan

A good site for Chiari info and support is ASAP.org.
I was diagnosed in Oct. 08, and am celebrating my 6th month anniversary out of surgery. On the road to recovery.
on April 3, 2009 at 3:22 pm | Reply Lace

Just curious why you picked chiari for your topic ~ it’s a pretty random topic ~ I think u will find more info about chiari on personal blogs ~ there’s a growing community of us chiarians out there on the web ~ Feel free to e-mail me if you have any questions. ~ Lacie