Chiari Online Support Group

Newly discovered Chiari

Good morning! I’m still processing my new normal. Last week, I had a second brain MRI since September & the radiologist found low lying cerebral tonsils 5mm. I’ve been trying to find the cause of my new symptoms & no one has been able (or wanted) to help! I’ve had to push for every test & do my own research. This week, I have to try & find a neurologist who can help me now. Maybe now that I have physical proof, I can get help! I wonder how they missed it on my 1st MRI but I know things get overlooked & the 1st neurologist I had wouldn’t even look at it. He only reviewed the report where it was,missed too! I’ve been educating myself as much as possible since I got the results last Thursday.
I’m so grateful to have found this group last night & to be accepted! Thank you all for being here & helping me not to feel so alone! I look forward to diving in & contributing as I can!

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Hello there, Michelle!

We’re glad that you found us too, and we’re always happy to have new members, especially ones that seem sociable, join us.

I hope you find the information and the companionship you’re looking for here. Please let us know if you need help getting around our site: some people find it a bit difficult to find their way around in the beginning.

All the best to you from the rest of us

Seenie from ModSupport

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Thank you so much for the welcome! I hope to be as supportive & uplifting as you all have been to me!

Welcome Michelle! Glad to have you join. I am relatively new to this group as well. My 11 yo daughter was diagnosed with Chiari in August and just diagnosed with EDS this month. We are always learning our new “normal” but I find this group a blessing a very supportive and informative. I pray you do as well! Merry Christmas to you and again, welcome :slightly_smiling_face: God bless you!

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@myangelface Thank you so much for the warm welcome! I’m still waiting to speak to a doc about the severity & details of my condition. Sadly, nothing has moved quickly & I’ve had to push for tests, etc just to get this far. Frustrating! I sat at home alone Christmas Day as the pain was too bad & I couldn’t fake happiness. I sure didn’t want to mess anyone else’s holiday up!
I’m so sorry your child has this issue but I’m glad they found it while she’s still young. EDS too? I can only imagine. I haven’t been diagnosed with that but they also missed the CM even with my symptoms & previous brain & c-spine MRIs. Praying that gets the care she needs to live a wonderful life! It sounds like she has an awesome mama & I’m praying for you too!

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@MichelleP thank you for your kind words and prayers! Trust me and all the others when we say “patience is a virtue”. In our house we try to enjoy the gift of today, sometimes though, we have to enjoy it an hour at a time. Things change quickly and we have to learn to appreciate the good moments and pray for strength during the rough ones! It is still rather frustrating that answers don’t come quickly and many people don’t understand. That’s one reason I am so thankful for this forum…understanding is invaluable! Sending you our best and praying you will stay positive while God works out the details for you. :purple_heart:emphasized text

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