Cerebral amyloid angiopathy

Can you please share what thing scan be done to slow the progression sown and the activities that could be helpful.

Diagnosed with brain micro vascular brain disease. Can not get an answer if it can can affect vision. I am 71 years old and diabetic. Had cataract surgery the past January. Noticed recently having difficulties with night vision and constantly feel light headed. Neurologist does not know what is causing it?

I had a hemorrhagic stroke in November of 2023. I am exceptionally fortunate to have a neurologist in the family. I had 3 Tia’s prior to this stroke. My nephew suggested CAA to me. He also suggested I hook up with a stroke neurologist but to not mention what my nephew had said. The stroke neurologist said exactly what my nephew said. From what I understand there are some clinical studies but apparently they have not had good outcomes yet, according to my stroke neurologist.
My neurologist thinks I potentially have 1-2 decades left in me. I am 65 now. I do vestibular PT on my own every day and walk 3 miles a day using my walker. It was such an out of left field diagnosis that I was terrified in the beginning. Now I try not to think about it and do what I can to feel somewhat human.
Good luck!
Jim

I am a lung cancer patient on Tegrisso, targeted therapy. Because of this I get a MRI brain scan every 6 months . Six months ago the scan was normal. The results of the December scan showed multiple cerebral microbleeds and amyloid places. Not much information was given and I am seeking advice.

@nellie1 - I imagine you're nervous being told you have cerebral microbleeds and amyloid in places. And I'm sure it's a huge surprise that this scan that was normal not long ago now is showing something different.

In my experience dealing with serious medical matters, I've found it scary to read testing or scan results before meeting with the doctor (though I do it anyhow), especially because radiologic and lab results can be full of jargon.

I'd like to tag some members who may have knowledge or experience from their own lives or the lives of a loved one related to getting information about findings of cerebral microbleeds and amyloid, including @catherinep52 @zerodas @tcainaru @trishannabanana @happypappy2.

nellie1 - Do you have an in-person appointment or phone call scheduled with your doctor to discuss the scan's results? What would you say are your biggest concerns right now?

My conc e rn is the diagnosis of mictovascular brain disease. What does the future hold for me? Will it get worse

Mictovascular ischemic disease and Cerebral Amyloid Angiopathy are different (I think). CAA causes microbleeds but many people have no other symptoms. The doctors say to just live your life! There was a webinar about CAA on 11/23/24 that is now on youtube that is very helpful - especially the beginning presentation by Dr. Steven Greenberg.

I have an in-person with my Oncologist next month as well as a first Neurology video conference. My biggest concern is becoming slowly incompetent and helpless. The lung cancer was a complete surprise and now this. I am feeling overwhelmed.

@nellie1
Last November I had a hemorrhagic stroke in the right occipital lobe and was consequently diagnosed with CAA. I’m fortunate to have a neurologist in the family and the first to have discovered the CAA. He suggested to me that I get rid of my current neurologist and get a stroke neurologist which is what I did. there is nothing they can do for you so you try to live your life not worrying too much,way easier said than done and with the Internet it’s 10,000 times worse. I set up goals for myself one of the things that happens from CAA is I get between 30 and 50 headaches a day since my stroke i’m supposed to be on the lookout for a thunderclap headache and a sudden increase in blood pressure. It’s a little unnerving to say the least. in the year after all of this happened I don’t know that I’m any better at that than I was from day one.
I wish you nothing but good luck, and a long life!