Cerebral Amyloid Angiopathy: My husband recently diagnosed

Oh @nleejewell, if your husband was to have a stroke, how fortunate that this happen while you were with the neurologist. Allow me to bring in others to the discussion who have experience with dementia and cerebral amyloid angiopathy, like @gbiffart @nicolehf @nanatessie @jamestitus @sistertwo @larryh123 @keithl56 and @shedwina

While we wait for other to join the discussion you may be interested in this related discussion:
– Cerebral amyloid angiopathy: https://connect.mayoclinic.org/discussion/cerebral-amyloid-angiopathy/

What was the original reason for seeing the neurologist when the stroke occurred that led to the diagnosis of CAA? How are you doing?

I have had numerous small strokes-TIA. Had an mri because of headaches, dizziness and leg weakness and was diagnosed with CAA. I have had several brain bleeds. I am taking Coumadin because of a valve replacement which makes it worse but can’t stop. I have a few symptoms like dizziness, headaches and limb weakness but none of the more serious ones. I’m in danger of dementia and Alzheimer’s but no signs yet. When I was first diagnosed, I read about it and scared myself. At least I know what could possibly happen and can watch out for it. I have an mri every 6 months unless I have problems and so far staying about the same

Thank you for sharing. My husband was on Eliquis because he has AFib, but his neurologist and cardiologist talked quickly and agreed that he needed to stop the Eliquis immediately and avoid all blood thinners. The neurologist said taking them could result in a catastrophic stroke. The cardiologist wanted him to check out the Watchman, although acknowledging that it requires blood thinners initially too. All the doctors at the hospital said it wasn’t an option.

He has aphasia and memory loss, which is why we saw the neurologist initially. The positive for me is that he’s 80 and in good physical health, and from what I’ve read this isn’t typically a fast acting disease. Do you mind telling me how old you are? And if you know if yours is genetic, blood pressure, inflammatory related? Are you on medication?

I am 70 and was diagnosed about 5 years ago. Yes it is slow moving and that is a blessing. They are not sure what is causing it as I have so many issues. I have marfans syndrome which is a connective tissue disease and the Coumadin but with a valve replacement you cannot come off it. Marfans causes many things so every time I’m diagnosed with something the doctors always blame that. That’s a very interesting disease-if you or someone in your family don’t have it. Praying for you and your husband that nothing major happens

My 67 yr old husband was just diagnosed with CAA. His neuro & cardio want to do Watchman device next week. Can I ask why your doctor did not want Watchman??

After a routine brain scan to check on a menginoma tumor that I had for many years the radiologist showed amyloid angioplasty. My family doctor said it was not treatable and why she had learned about it in medical school she never had a patient with it. I made an appointment with the Mayo Clinic. After many tests they were unable to confirm it without previous brain scans. I was told that my tumor was growing and as a result I had a Gamma knife procedure to help stop or slow the tumor. Sadly it didn't work and I had 2 strokes and emergency brain surgery. The doctors said the only way to confirm amyloid angioplasty is with a brain biopsy after death. They confirmed it was untreatable and not curable It had been 3 years and it still shows on my scans but I no longer worry about it because if that is what I have I am still fine. The brain surgery was a success with no more strokes or regrowth of the tumor. I would highly recommend going to the Mayo for a second opinion if anything to rule out other issues.

Thank you so much for ur reply. We just found out he does not need watchman (as during a previous heart surgery his left atrial appendage was closed) so this is at least one less thing to worry about

I’ve had 3 brain bleed strokes the first one was in January 2012 , the doctors never mentioned CAA at the time. I was paralyzed on my left side for about 5 weeks, then movement came flooding back. In April 2012 I had my first and worst of about 10 seizures. Meds controlled that . Almost 10 years to the day January 2022 I had another brain bleed stroke, even larger than the first, but no quite as disabling. After 12 weeks of inpatient and outpatient rehab I recovered nearly back to baseline.
Unfortunately, I had another brain bleed stroke accompanied by two severe seizures in the middle of August. Again thru 8 weeks of outpatient rehab I was able to get back to biking , hiking and playing tennis.
Unfortunately I’ve recently had another bad seizure and I’m hoping that the change in seizure med dose will prevent another, at this time I don’t dare ride my bike or go kayaking. For fear of a seizure causing a painful or uncomfortable fatal accident. I’m still able to function close to my baseline prior to August. However I’m quite anxious about the seizures and remain pessimistic about my future. My wife and I have talked about going to Switzerland for voluntary assisted death. Mostly because I dread having a stroke that disables me to a much greater degree, not able to walk, talk, toilet myself, eat, see etc. I’ve read too much about how strokes can cause much worse things than death. Sorry for being so negative. But I can’t see any rainbow on the horizon.
My last two hospitalizations listed a diagnosis of CAA
My neurologist says that the diagnosis can’t be certain until autopsy., but from my history , MRIs and genetic testing, it’s certainly the most likely diagnosis.
This is really scary deadlier than brain carver with no treatment to modify the course at all

Hi. I am a mother and caregiver to my 31 year old who was diagnosed with CAA summer of 2022, after a stroke and simultaneous birth of her first and only baby. I am pretty sure there are a few tests like PET Scans and a way to measure amyloid B peptide...the only way to really know you have CAA. Every day, people well under forty..even early 20's are being diagnosed with Radiation induced CAA as little kids having cancer treatments. What I am saying is you have had a pretty good, long life and must be thankful and not be fearful. I am 72 and wish I could trade places with my daughter. But I am happy to hear so many of you "mature" folk have lived so long with this crap disease. My daughter's Neurologist said if he were me, he'd have her live her best life as possible.

Welcome, @charleenboone. You're right that Cerebral Amyloid Angiopathy (CAA) is not reserved only for older people. I'm tagging fellow members like @nleejewell @staruk67 @nanatessie @purpleturtle @pericorudy @jamestitus @sistertwo @larryh123 @keithl56 and @shedwina to rejoin this discussion and share.

Charleen, it must be break your heart that you can't trade places with your daughter. It sounds like this isn't the first time you've had difficult medical circumstances. Did your daughter have cancer as a child?

How is that lovely grandchild of yours doing? Do both daughter and grandchild live with you?