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Chiari 1 malformation

Apr 06, 2017 8:07 AM

Just got this diagnosis which may very well explain all my pain. Anyone have any experience with this?

Apr 06, 2017 9:34 PM

I have a friend who is actually going to have brain surgery next month for their Chiari. I want to talk him into downloading this app and joining the conversation both of you might learn from each other.

Apr 06, 2017 10:19 PM

Cool tell them to Join id love to talk

Apr 06, 2017 10:20 PM

I just sent him a private message on Facebook and I did a screenshot of the app so he knows where to join. I hope that he does join I think it would be really good for him because he's really scared going into this surgery.

Apr 06, 2017 10:29 PM

Of course it's a scary surgery. I cried when I first found out that it's possible I may need surgery and it's only a hypothetical at this point for me

Apr 07, 2017 6:15 PM

Hope the diagnosis helps you regarding pain management. I just finished a book by an author who was diagnosed with chiari 1. It's an accessible read. Her website is www.andreahayes.ie in case it may be of interest to you

Apr 07, 2017 6:15 PM

Cool thanks!

Apr 07, 2017 6:19 PM

No problem, she is into some pretty alternative complementary therapies which may not be everyone's cup of tea but in the book she describes meeting a leading chiari specialist in NYC and their decision to watch and wait re surgery etc. Best of luck

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