Cerebral Amyloid Angiopathy (CAA): What can we do in the face of medical uncertainty?
Hi everyone!
I’m here to share a bit of my story and my father’s story.
Up until the end of 2023, he was in perfect health. He always had routine check-ups and monitored his blood pressure; everything was fine. Then, late in 2023, he experienced three episodes of transient pure aphasia that resolved spontaneously. He was hospitalized, underwent testing, and started taking antihypertensives and aspirin.
After that, there were two years without any scares, along with periodic brain MRIs. Everything was in order.
Earlier this year, he had another episode of transient aphasia. Another one followed a month later. He was hospitalized and tested again, but no significant findings turned up. Holter monitor, 24-hour ambulatory blood pressure monitoring (ABPM), and carotid Doppler scans were all normal. There were some adjustments to his cholesterol-control medication. Today, at 60 years old, my father remains fully functional, thank God.
However, one of those MRIs revealed findings suggestive of cerebral amyloid angiopathy (CAA).
That is why I am turning to this community. Almost every source I consult on the subject describes it as a condition with no cure, no disease-modifying therapies, and a variable prognosis. I feel like I’m in the dark. I don’t know what to expect. Beyond his follow-ups with the neurologist, I don’t know what other resources to look for.
Has anyone here gone through something similar?
Do you have any recommendations for therapies, practices, or resources that you believe make a difference?
How do you navigate this experience as a family?