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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So sorry to hear your story, and definitely understand sometimes feeling overwhelmed. My husband was diagnosed with CAA in 2017 after having 2 episodes of numbness in his right arm; MRI showed small bleeds and other changes. Those episodes lasted 20 to 30 minutes and continued off and on for 6 months, then stopped. He had been having some cognitive issues before, most noticeable was the loss of his previously perfect directional sense. He was/is otherwise is great health, and we basically decided to forget about it till we needed to worry. We had almost 5 good years with no other symptoms, but in 2021 he had a major bleed (stroke) affecting his left side -- some difficult complications kept him in and out of hospital for a few months. He now uses wheelchair, walker, cane, depending on the circumstances. His being able to walk some is a great help, as he's able to go to the bathroom unassisted, etc. Cognition continues to get worse, but many people don't even notice. But he doesn't have the concentration to read anything more than a page or two and he can't do numbers at all, which was his prior specialty, never looks at his computer and even has trouble with the phone. He is now 81 and his physicals show him still in excellent health -- lucklily no heart or blood pressure or any other issues -- only thing wrong with him is CAA. I still work part time so we have a caregiver M-F from 11 to 5, which is a lifesaver for me. Trying not to worry about the future and missing the active life we had before are the hardest things for me. I find reading comments by others really helps me remember we are not alone.

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@oldkarl

@gbiffart Cranial Amyloid Angioplasty I suspect you mean "Cerebral Amyloid Angiopathy" I could not find anything on "Cranial Amyloid Angioplasty", but there is lots on Cerebral Amyloid Angiopathy if you Google it. I say this because it is a part of my Primary Familial Systemic AL Amyloidosis in the cerebral cortex. This runs in my family. Actually, there are a bunch of us that have it. It is an amorphous (without shape) deposit of dead proteins in the brain. It is built up over many years. Usually it starts as a single cell, and it could begin long before birth. Then it divides, and divides again and begins to conquer. By the time one is in their 50's or later, the deposit in the cortex (it is like Alzheimers, but in a different part of the brain) is noticeable on CT. It is a form of Amyloidosis. (see http://www.amyloidosis.org). I leads to dementia, and is always fatal if one lives long enough. This form makes little fibrils, tubes filled with water, which get between the cells of the body, and particularly the cells of the nerves and the artery walls, interrupting the flow of electrical signals. And for @lisalucier, I suspect you might find others under Cerebral Amyloid Angiopathy. There are many centers who deal with this, including Mayo-MN, Brigham and Women's, Stanford, etc. And my own story and situation is posted free at : https://bit.Ly/1w7j4j8 Free, and as accurate as possible.

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Went to @gbiffart link for her story and it has been deleted.

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@sistertwo

When my mother was diagnosed by Dr Rabinstein (MN Mayo) with CAA we found his knowledge extremely helpful and encouraging. There are things you can do to slow the progression down and some activities that could be helpful. Wishing your wife and you the very best.

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

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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?

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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

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@zerodas

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

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Jim, it sounds like you're making excellent progress! Keep it up! Your story is encouraging.

I had a lacunar ischemic stroke on Christmas Eve 2018, and my recovery is a long journey. I have documented parts of it on my YouTube channel, "From Recovery to Discovery", an ongoing series of 5-minute episodes.

I'd be very interested in your reaction / comments:
https://www.youtube.com/@srlucado/videos

Thanks, and again, congratulations on your progress!

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