Cerebral Amyloid Angiopathy: My husband recently diagnosed

Posted by nleejewell @nleejewell, Jan 9, 2022

My husband was recently diagnosed with CAA while he was having a stroke in the neurologist’s office. He’s apparently had two large bleeds and a few micro bleeds and has symptoms. Does anyone have the same or similar situation?

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nleejewell | @nleejewell | Jan 25, 2023

I belong to several groups with both patients and caregivers and have tried to understand the multiple issues and symptoms people are going through. I’m increasingly appalled at how young many are, although your daughter is the youngest. Much as we struggled with my husband’s diagnosis, we finally settled on this conclusion: nobody wakes up with a guarantee they will finish that day. This is a degenerative, progress disease with totally unknown consequences. Life’s kind of similar-we face every day with an unknown ending to our story. Hard as it may sometimes be, live every day the best possible way. Get and give as much joy, wisdom, sharing, comfort and caring as possible. Live your life.

cherrishslade | @cherrishslade | Oct 10, 2023

My husband was recently assumed to have CAA. He was shot in the head in a childhood incident and still has shrapnel there so no MRI can be done to definitely say what's going on. He's 51, has had 3 strokes and now 2 seizures. He has cognitive deficiencies also. He is paralyzed on his left side and has difficulty walking. This had all occurred in approximately 15 months. I am now looking at long term placement for him. CAA is just devastating.

purpleturtle | @purpleturtle | Oct 11, 2023

I am so sorry. I was also diagnosed with Amyloid angioplasty in addition to a brain tumor. I was very scared because my doctor told me there is no treatment or cure.
I went to Mayo Clinic in Rochester for a second opinion. I was there for one week for diagnosis
and I went back for a gamna knife procedure to try to slow growth if my tumor. I was there for a week. Unfortunately it didn't help and I had 2 major stroke which resulted in major surgery to remove my brain tumor. I was told my many specialists that the only way to diagnosis Amyloid angioplasty 100% is with a brain biopsy after death. Because of this I am donating my brain to Glenn Biggs research. I have balance problems on my left side which none of the doctors understand because my tumor was on the left side so it would have affected my right side. It has been 4 years and my MRIs still show Amyloid angioplasty but I no longer worry about it. I have to use a cane.