Looking forward to learning how other people with Chiari are doing and what makes things easier or harder. I am especially interested in those who are older (I am near 65). Seems harder to figure out what new problem is from what aging part of the body! I have autoimmune disease as well and a cavernous hemangioma in my right temporal lobe so things get complicated for diagnosis.
I was just told I have chronic respiratory failure with hypercapnia. Lots of desaturations at sleep - lowest down to 62 and nearly 70/hour.
Been having shortness of breath for 5 years and no doctors have been able to figure out why. I finally did some research and saw maybe the Chiari is the culprit. I was told 15 years ago that since it was only 5mm it was not the cause of anything - so go on get. Never thought about it after that and just dealt with all the weird problems on my own - avoiding doctors in general. Now back to the diagnosis wastelands but hoping it will bear fruit this time around.
I am a strong and hardy person, live alone still - though close to my mate - but I am getting nervous (so far not anxious) about what my future looks like. And how much of one I have. I have to move soon and that is not a pleasant thought at this time of the world - even without chronic and serious health issues!
I notice my typing and proof reading skills are LOW - and I was a published writer! My hands are weak and dis-coordinated and my brain does not interpret my instructions as well or notice all the errors even when I proofread. So bear with me.