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Cerebral amyloid angiopathy

Posted by montanapets @montanapets, Dec 14, 2011

I was having an MRI to work up onset of headaches, 3 wks. duration and this was seen on the MRI. I'm an RN and scared out of my mind that I'm going to have a stroke. I'm not reading anything online that sounds like anyone can do anything. Is there any reason to go to Mayo? Might I still live a long life? Is there any chance the MRI was read incorrectly? I'm having a hard time here with all this.

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catherinep52 | @catherinep52 | Feb 3 8:27pm
In reply to @lisalucier "Hi @catherinep52 - just wanted to check in and see how your husband is doing? Has..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

Hi @catherinep52 - just wanted to check in and see how your husband is doing? Has he had any more arm numbness? How's his cognition?

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Thanks for asking. After that post from 2024 things began going downhill quickly. By November he was having delusions and periods of agitation. Physically having more difficulty. Aggressive spells that he never remembered - “I don’t yell at people, I don’t hit people” his normal sweet self said. Eventually Rexulti calmed him down some but we moved him to memory care in February and on 6/26/25 he died. Peacefully in his sleep after having been up that day, eating, etc. So the end mercifully spared us the lingering death that many with CAA have. When I told our daughters it was too soon they said “It was too soon for you Mom, but not too soon for him. He never wanted this life.”

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Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 3 9:14pm
In reply to @catherinep52 "Thanks for asking. After that post from 2024 things began going downhill quickly. By November he..." + (show)
Profile picture for catherinep52 @catherinep52

Thanks for asking. After that post from 2024 things began going downhill quickly. By November he was having delusions and periods of agitation. Physically having more difficulty. Aggressive spells that he never remembered - “I don’t yell at people, I don’t hit people” his normal sweet self said. Eventually Rexulti calmed him down some but we moved him to memory care in February and on 6/26/25 he died. Peacefully in his sleep after having been up that day, eating, etc. So the end mercifully spared us the lingering death that many with CAA have. When I told our daughters it was too soon they said “It was too soon for you Mom, but not too soon for him. He never wanted this life.”

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@catherinep52 - oh, wow. So sorry your husband began having violent spells he didn't remember, delusions and agitation. How hard to watch a loved one go through, though also a bit frightening. I'm glad you were willing to put him in the care of professionals, as that sounds awfully difficult for laypeople to deal with. I'm glad his passing was peaceful and did not linger.

Your daughters seem to have some real words of wisdom.

At this point, would you feel up to sharing any words of wisdom or suggestions for others diagnosed with CAA or for their caregivers?

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georgiaw | @georgiaw | Mar 9 9:40am
In reply to @oldkarl "@gbiffart Hi, friend. Glad I could help a little. By the way, I am 77. I..." + (show)
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@gbiffart Hi, friend. Glad I could help a little. By the way, I am 77. I bleed a lot, so just know that this is part of the pattern. Most of mine is haematurine, but I also bleed in various other places. Small drops which just bleed under the skin are petechiae, which leave little red or purple spots under the skin. I am getting them all over my body now. So did the others. Dementia is about the same as Alzheimer's. Peripheral neuropathy is the same. The stuff is probably Gelsolin or Cystatin-C Amyloidosis, but get May or B&W or Stanford or another strong center to do the diagnosis. It is not enough to have your local center dX, unless your local center is Mayo-Rochester. The fibrils get into the sensori-motor nerves, just like they do into the brain. The cornea begins to appear from the inside like looking through rippling waters. Usually these waves are vertical. Reading becomes difficult. This is, so far, always fatal, but at 77 or 78, not too surprising, although some centers are working on clinical trials that might extend and improve life a few months. Be sure to have the regular checks for LCDD (sFLC, 24 hr urine, etc.) The big thing is to learn to manage this monster. Read the stuff from Mayo and others. The best are the videos (grand rounds) from Mayo, B&W, Stanford, etc. Especially the "What you need to know", etc. Martha Grogan and Angela Dispenzieri may be the best. Do get on to http://www.amyloidosis.org. Well, that is enough for now.
Hang in there. It is tough, but you and your wife gotta fight together.

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@oldkarl thank you so much for this information. I have brain bleeds, petechia, amyloidosis and stage 4 breast cancer.
I know it sounds hopeless but God has given me 12 years since cancer diagnosis. I go to Mayo in Rochester. I plan to checkout the website and info you posted. Thank you!

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