Cerebral amyloid angiopathy

@sistertwo Thank you so much for responding & most especially for the other post with the name of the Doctor at Mayo...I will be calling them tomorrow. I have read some many posts on a FB CAA group, I realize my chances of getting the information about prognosis are not good, but perhaps they can at least tell me if he has a sever, moderate or mild case. Not knowing anything makes we wonder every time I check on him if he made it through the night or his nap. He still sleeps a lot, even after 2 months, but one of his therapists said he needs to, so I let him sleep as much as he wants. Thank you again so very much for your posts & your prayers & positive thoughts...this has been so hard to take for both of us.

@hopeful33250 Thank you Teresa & I will definitely let you know what I find out.

I just joined this site today. I am on the East Coast in Delaware, 65 year old female, happily retired, and diagnosed with CAA last month after at least three separate episodes that I did not know at the time were episodes. The first was a "curtain" that drew across my left eye, lasted 3 minutes or so. I suspected a detached retina, but retina doc saw no abnormalities. A couple of weeks later while playing pickle ball I experienced a bout of double vision which lasted for about 15 minutes and went away. Didn't think much about it except that it was odd. One week later, again playing pickle ball, I was unable to "find my words" which lasted about 5 minutes, and then slightly and occasionally over the next 48 hours. Went to my cardiologist (I had mitral valve replacement last fall and am on Coumadin), who ordered an MRI. The MRI report came back with a dx of CAA and was referred to a neurologist who ordered a CTA with contrast of neck and head. CTA came back with no abnormalities. Neurologist believes it was my heart, not my brain that caused the episodes, but he doesn't know for sure. I found the CAA research group at MassGeneral, wrote them and asked for a doc with CAA experience between Philly, DC, Baltimore, and was given 5 docs between Univ of Penn Medical Center and Hopkins. I have engaged with the docs at Penn and have an appt May 1. I am looking forward to meeting with folks who know what they're talking about. I have perused this site, and have found it very helpful to me. Many of the experiences shared match my own. I look forward to learning more as I go along.

Hello @cbenson524 Nice to e-meet you here although I am sorry to read of your health challenges. They are never easy and the journey rarely smooth or what we anticipate it might be! Connect is a lovely and caring community, which has broad shoulders and sympathetic listening skills! I hope you continue to find some help here and that your upcoming visits to your new doctor(s) at Penn will be of solid assistance!

I wish you continued strength, courage, and peace!

Thank you, Sir. I have enjoyed nearly 65 years of almost perfect health, so this aging thing is sort of naively unexpected for me. I have read much about CAA over the past 6 weeks, and there have been some allusions to the possibility that CAA may in some way be related to autoimmune diseases. Both my parents had severe, severe rheumatoid arthritis, the complications of which killed them both. Rheumatoid arthritis is an autoimmune disease, so there may be some kind of correlation. Or not. Who knows? Anyway, thank you for your kind welcome.

Hello again, @cbenson524 I am Scott and I, too, had normal health until shortly after my 66th birthday when I suffered a stroke, which lodged in my right eye. Still adjusting to the total loss of sight, but I am coming along with it. As they say "getting old ain't for wimps!" 🙂

My wife, on the other hand, fought an incredible war against brain cancer for 14 years, for which I was her primary caregiver. I know from our shared experiences with her health often the 'not knowing' phase of things can be a whole different kind of challenging! The one good thing is it seems, to me at least, the pace of medical discoveries and understanding is continuing so that is a goof thing for us all!
Strength, courage, and peace!

I have been diagnosed, at Mayo, Rochester as having CAA. I was told that I have a ten percent chance of having a bleeding stroke each year. Not cumulative. I must try and keep my blood pressure as low as possible and never take any sort of blood thinner, including baby aspirin. As you may know CAA is an incurable disease causing blood vessels in the brain to become weakened because of protein (amiloid) in them.

Hi Just to put your mind at ease My wife had 2 major bleeds last spring about a month apart but has been fine for almost a year.Has returned to almost normal!!
Blessings
Biff

Welcome to Connect, @thomaslmason. Glad you found the group here. @sistertwo is also seeing a specialist for CAA at Mayo

@nonipoppy, I'm wondering if you were able to send your husband's medical records for review. How is he doing? How are you?

@cbenson524, I believe you had an important medical appointment recently. Did you get further clarification about the brain or the heart being involved?

Awesome!