I was found to have a Arnold chiari malformation, has similar symptoms and often gets misdiagnose; drs here were no help so i went to mayo clinic because they have all this research for it. He said my symptoms were not the chiari at all π and dx me with occipital neuralgia then after I mentioned my mom having fibro, he's like oh ya that's what you have π© and sent me to a fibro clinic. Feel like I went there, spent a lot of money, for him to just brush it off. Idk. Mom says I'm in the grief andβ¦ read more
So interesting that you brought this up. There is a gal on this site that I have been talking to for over a year. Her symptoms were baffeling. The doctors diagnosed her with fibro but it seemed like there was something else going on. She finally had to travel to a big time hospital where they finally diagnosed her with chiari. She had her surgery for it on October 4th. I'm so interested to hear if this was her problem all along and if her "fibro" will be gone after she heals.
If you see this post my friend, I'm praying for you every day.
If you feel like something else is going on, keep fighting until you get your answers. I feel so bad you are going through this. It makes me so angry when I hear about doctors just brushing people aside. There's no excuse for that and I don't understand what they get out of doing that. If you are in healthcare and are burnt out, or cold, or dismissive, then you need to leave the profession. We deserve better. You deserve better.
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Sounds great thank you! I hope she is doing Well! Have a good night :)
@A MyFibroTeam Member, I texted her today and no response yet. Last time I talked to her was the day after her surgery when she let me know it went well. I have no idea what kind of recovery this surgery is but I know she will text me back when she is able. As soon as I hear from her I will contact you on your page. Hope you are having a good day!
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Annieko seems like most Drs even haven't, just what they've read in text books and all say it's just an incidental finding and doesn't cause my symptoms π so who knows.
I also am thinking of her. Just looked on the internet about chiari. Never heard of chiari.