Any Chiari Malformation Warriors here?

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I had my chiari decompression surgery on April 9th and am doing great in recovery, been looking for groups and things since my diagnosis in September of last year. I was a fairly sever case and was herniated 2 centimeters. not milimiters.. And I had very little csf flow. At the appointment before my surgery my surgeon basically told me death was a real possibility without the surgery. So I am very glad how well I have been doing since my surgery.                                              Just want to tell anyone going through the same things to keep your head up! It is scary but I feel like maintaining a positive outlook has really helped me through everything.😊

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I have Ehlers-Danlos syndromes (EDS) which commonly causes Chiari. I've never been tested. My mom doesn't have EDS, but she has Chiari, strangely enough. I have a lot of ESSer Facebook friends who have Chiari. I know there are a lot of Chiari groups on Facebook. You may find support there. ((hugs)) I'm sorry you have to deal with Chiari, it really sucks.

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I have chiari!

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Yes! I had my surgery back in 2009 when I was 17! It helped an unbelievable about!! I unfortunately had some other issues about 3-4 years after my surgery with chronic migraines coming back but it was absolutely ruled out that my chiari was the problem. However the scar tissue from the surgery was!! I have a neurostimulator implant in my neck now that helps control my pain and I have my life back!!

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I know a woman  with Chiari.  We both have hydrocephalus.

Any Chiari Malformation Warriors here?

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