Hello, my mother was diagnosed with chiari 1 back in February. She has all of the symptoms that come with diagnosis and they are worsening as time goes on, by the day it seems. We live in Maine and up here there is no doctor who even knows how to treat or even suggest treatment for this kind of condition. Though she has been adviced to contact a Chiari Institute for further help. She is in the midst of getting all of the records together as well as a referral to send to the institute in New York. Right now she is meassuing at 8mm. My question is at what point is surgery necessary in your personal experience? Or at what point did your dr. feel surgery was necessary for your treatment? Did they base it on your symptoms or on what you were meassuring? The people that my mother has talked to that had the surgery and said they either regret having it or don't feel any better post surgery. Does anyone else feel this way? If I know my mother she is going to weigh the symptoms against the complications of surgery and post surgery before deciding what is in her best interest. But, as an observer, I can see her deteriorating pretty fast. I have many more questions about this but if anyone can start me of with a little advice or even give me a summary of their experience, that would be great! Thank you for reading and responding.
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