Just Had my diagnosis- struggling to cope.

[Kaye41greenbug]

Hello, after 3 months of constant headaches, tingling limbs, muscle weakness and blurred vision I’m finally getting somewhere. Yesterday I was diagnosed with type 1 Chiari Malformation, but have been told that because I’m so young they don’t want to risk surgery. I am also being investigated for having idiopathic Intracranial hypertension and have been told that the diagnosis could take up to another 3 months. In the meantime I’m receiving no help/treatment- is this normal?
I’m also really struggling with the idea that this will be my reality for the rest of my life, does anyone have any suggestions on how to deal with the diagnosis?

[selmaS]

Hi and welcome to the Chiari forum.

First, make sure the Drs you see is a true Chiari specialist and is ruling out ALL related conditions....also it can take time to determine what is the beat course of action for you so for it to take time is normal...and there is nothing to really do but avoid activities that trigger symptoms.....

Educate yourself as much as you can and know you are not alone...that helps and  research Drs to find the right one for you....having the right Dr is key!

Slow and steady is the way to go....and know compared to me your Dx was fast......I have been to Drs all during my school years and was not DX'd until I was 48.....I had surgery in '09 and am doing so much better....surgery is not a cure but a means to slow progression and help with some symptoms....

Take a deep breath and exhale slowly.