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New Diagnosis... Looking for support and advice

Hello all,

I just received the results of my MRI which says I have Chiari type 1 anomaly 9mm. I don't have a follow-up appointment with my neuro until February, so I've gotten all of my information on this by doing my own research. I'm here looking for some support, knowledge, experiences of others, and maybe even a little advice. Can anyone help a sister out?
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620923 tn?1452915648
Hi and welcome to the Chiari forum.....I am willing to help any way I can....not sure what info you have gathered already or what you need filled in....but the best advice I can give you is to research NS (neurosurgeons) as they all may offer to do surgery, but they are not all well informed or experienced to do the surgery....there is much more testing you need before surgery should even be discussed.....AND any Dr that claims they can "FIX" you run away as fast as you can......surgery is not a FIX or a CURE it is only a means to slow progression and restore CSF flow.....Chiari itself is not the herniation, but the malformation of the skull which causes the cerebellum to herniate.
Any way let me know what your questions are and I will try my best to help.
If you need names of Drs to research let me know what area you are in to see if we have names for you to research....be advised the lists of Drs is not a referral nor an endorsment of those listed it is only a starting point for you to research.ANd also know you may have to travel to get to a true Chiari specialist.
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I remember being newly diagnosed and all the thoughts that went through my head. It’s very overwhelming. But sometimes the answer gives you at least some peace knowing there is an explanation for all the things you’ve been dealing with over the years.

I can tell you my experience in this journey, although it’s not the nicest one. Each person has their own road but it all has the same path.

Ask any question you want. We are here to help
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