Recently Diagnosed - Advice Welcome

Welcome Greetings and Introductions
1

I want to say thank you for accepting me into this group. I am newly diagnosed (2/4/15) with 5.5mm extension of the cerebellum, Chiari Malformation Type I. I am a little nervous and scared at this point, but I am trying to learn as much as I can about my options and where to go from here.

Knowledge is power, as they say. :) I am comforted to know I am not alone. Does anyone have suggestions for me as for what to do? I still have to make a neurology appointment, and am struggling with who to see, as I don't trust the locals, lol. My PCP had never even heard of this...

It was a radiologist that discovered it. Thank goodness for the thorough workings of that man's mind. All other MD's and ER's have treated me like I was crazy, telling me my symptoms were just anxiety, and accusing me of just being depressed. I want to spread the word, raise awareness, and become an advocate for this disorder!

I welcome any advice, as well as am hopeful to be able to support someone else.

2

Tina, welcome :slight_smile: there is a lot of great info for the newly diagnosed at the top of the page Undertanding Chiari tab. Thank goodness the radiologist called it out!

Jenn

3

Thank you Jenn! I appreciate your kindness! I am also thankful that the radiologist knew well enough to diagnose that.

jcdemar said:

Tina, welcome :) there is a lot of great info for the newly diagnosed at the top of the page Undertanding Chiari tab. Thank goodness the radiologist called it out!

Jenn
4

Thank you Rebecca! Are the physicians listed above all actively treating Chiari Malformation? Or is that something I should ask them?

Rebecca said:

Hi. Also check out the doctors link at the top of the page to find a Chiari specialist/neurosurgeon. Neurologist most often will dismiss your Chiari as insignificant and not causing your problems. Many local neurosurgeons will also dismiss you. Its best just to find someone who actively treats Chiari on a regular basis. Save time and money. :)

maybe take some print outs from csfinfo.org and links to the videos on that page for your primary to help him/her understand, if they are willing to learn for you.