Chiari Awareness Month!

#1


A chiari malformation is when the tonsils of your cerebellum have fallen into the opening where your spine meets your skull and there's various types.., symptoms from them are endless.

It's not something very many people know about, doctors included, which is incredibly difficult for people like me. Two years ago I was diagnosed with atype one chiari malformation that at the time wasn't causing me issues but as life went on it got really bad and as many of you know, I'm in recovery now for a surgery to help treat it. There is no cure. That means throughout my life I could keep having to have these surgeries removing more and more of my skull and spine and possibly even having to use electricity to shrink the tonsils back down.

I'm gonna stop rambling now but please educate yourself and help spread awareness
http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm
http://en.wikipedia.org/wiki/Arnold–Chiari_malformation
http://www.mayoclinic.org/diseases-conditions/chiari-malformation/basics/definition/con-20031115
http://www.webmd.com/brain/chiari-malformation-symptoms-types-treatment

Oh and anyone interested heres some wicked pics of my incision/scar. don't open spoiler if you dont like medical stuff or scars or anything of the sorts ty.
right after surgery:

2 days post op:

one week post op:

Staples out 1 1/2 weeks post op:

posted this is comments too but hey i'm too weeks post op!
 
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#8
It's so great to see Chiari Awareness pop up on the forums! My mother had her surgery five years ago, and it's one hard fight to put up with it. I too have had my fair share of MRI's in order to keep an eye on the progression. Chirari is very foreign among many doctors... it took a very long time for her to get a true diagnosis, and even longer to find the right specialist to operate (she chose endoscopic). Way to keep fighting through! It's tough, even a little debilitating at times, but some of us just don't have the best genetics. Thank you for sharing those pictures, and I wish you the best recovery! :)
 
#10
I wish you a speedy recovery and hope you stay well! :D

I was diagnosed with Chiari Type 1 sometime between 2010-2012. I had gone in for an MRI to test for something else, but that came back negative and they discovered the Chiari Malformation. I went for another MRI early this year and there weren't any changes, so that's good. :) I'm not (very?) symptomatic and I don't need medication so I'm thankful for that. My sister also has it, but hasn't needed surgery.

:hug:
 
#13
Thanks for posting this Silly <3 :hug:

My Mom has Chiari and my Grandma had it as well. There is a good chance I also have it. I decided not to get tested, but I do have some mild symptoms.

Since September is Chiari Awareness Month, there are nationwide walks happening to raise awareness. My Mom and I are participating in a walk and we are currently fundraising. I will leave the link here...I'm not trying to solicit anyone but I thought I would share it. https://www.conquerchiari.org/ccwaa14/LisaSavitt

Hugs to everyone dealing and living with chiari!
 

karkat

Well-Known Member
#14
happy chiari awareness months to everyone else with chiari
i had decompression in 2012
i came out of hiding to make this post happy chiari awareness month good luck with recovery silly mcdoodlebop !!!!!!!!
 
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