Cerebral amyloid angiopathy

Well, we met with the local neurologist (finally) & his opinion was a moderate case of CAA & for added fun, said he thought husband was also in the early stages of Alzheimer's. Showed us the MRI done 03/02 & identified about 10-12 prior micro bleeds, some in the R & L occipital lobes, a few in the temporal lobe & elsewhere. Also pointed out some lesions in the white matter areas of the brain. Gave him a version of the MMSE test & based on his responses to that & his history of prior cognitive & memory issues, came up with Alzheimer's. I'm not sure I agree with that...the man had a massive stroke 4 months ago, so of course he's got cognitive issues; how can he (or anyone) tell if his problems with the test are from stroke damage or Alzheimer's?? So, any suggestions about where to go from here are welcome...feeling overwhelmed with the possibility of dealing with 2 dementia related conditions & no clear answers for either. Or does it really make any difference, if the outcome is the same?

Sorry to hear about your conditions hard to imagine a tougher diagnosis!!!My suggestions would be to scale down and make the adjustments necessary to carry on.We have a friend living in and with this arrangement we can manage for a number of years to come.At first my wife felt that her job was being taken over but with counseling suggesting she could now retire like I did things went more smoothly!!
Blessings

Hello @nonipoppy

I am so sorry to hear that you did not receive better news. I can understand your questioning the doctor's diagnosis given the fact that your husband had a major stroke just a few months ago. I can also understand your disbelief about the entire situation. It does seem overwhelming, doesn't it?

Has you looked into cognitive rehabilitation? Here in Michigan we have Hope Network which does a lot of cognitive rehab. Perhaps there is a place in your area that you could consult with? Take a look and let me know what you find.

I look forward to hearing from you again and hope that you can find some peace and calmness in the middle of this storm.

Teresa

He was in the local rehab hospital for 2 weeks, then did outpatient rehab for about 6 weeks. They felt he was experiencing rehab "burnout" about a month ago & suggested he take a break & continue at home with exercises they gave us. He hasn't done much with it since....says it makes him feel "stupid". I keep trying to get him to continue...he has good days & not so good, but generally seems to be improving slightly w/o the rehab. But thanks for the suggestion.

Thanks for your input @gbiffart...right now things are not bad at all, day to day. Went to a class reunion 2 weeks ago & most people couldn't tell he was any different, so we have much to be thankful for. The main frustration presently is his desire to be "productive" in contributing to our family (mainly producing income...his self-esteem is tied directly to his AGI) & I have no idea what he could possibly do given his vision loss, memory problems & inability to read, comprehend & retain information. He had no plans to go into retirement until his late 70s & I can't imagine him doing nothing but watching TV & sleeping for the years ahead...he wants to work.

Thanks @cbenson524...I have also learned (the hard way) to be aggressive & proactive when it comes to healthcare & medical advice for myself & those I love...& though I am a southerner too, I don't always do it with southern charm, if I'm dealing with a doctor with an ego or a bad 'bedside manner' or a bad hospital. Fortunately, that has only happened a few times. But you are so spot on about the medical maze comment...it is so complicated & frustrating these days & after so many family health & just life conditions (many more over the past 20 years than I mentioned here) I am experiencing "battle fatigue" & just don't have the energy for it that I used to. I'm sure I will "buck up" & pursue things sometime soon, but for now I just have to let it go or I'm not going to make it in the long term. Thanks again for commenting.

I live on the west coast and was ready to visit a Mayo hospital anywhere in the country that could help my wife with treatment. But I believe that no one can help and I should not spend a lot of money just to get the same results. Am I wrong?

Hi @surf362, welcome to Connect. You'll notice that I moved your message to an existing discussion about cerebral amyloid angiopathy (CAA) in the Cerebrovascular group. I did this so that you can connect with other members talking about cerebral amyloid angiopathy and ask your question about treatment options and second opinions at Mayo Clinic.

Click VIEW & REPLY in the email notification and you will be able to read through the past messages by members like @nonipoppy @gbiffart @thomaslmason @cbenson524 and others.

A diagnosis of cerebral amyloid angiopathy is stressful and challenging. No doubt you will have questions about the diagnosis, treatment options and what will happen next. Experts at the Mayo Clinic can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Cerebrovascular access program.

I'm hoping @thomaslmason might have more insight about whether seeking an appointment at Mayo is worth the trip. When you call Mayo, they will review your wife's history and current status and care. It is Mayo Clinic's goal to provide the best care each patient needs, and not to have you incur additional costs for evaluation or travel if the care available is no different from what you’re already receiving.

@surf362, Thanks to many of you I hope this reply and comment will reach you. My wife had an epileptic like seizer in Singapore 6 years ago and five years later she had another one. From the las one we found out that she has CAA. Our doctor said "there's nothing I can do and you just need to home and prepare to die". He really said that. So I started looking for a cure that was out of the box. We tried chelation, new blood therapy, and the latest is Stem Cells. We had the stem cells two months ago and are hoping it will work. (I will let you know if the do or don't). The problem I have now is that no one will tell me if any treatments will work. I live on the left coast and all the Mayo hospitals are on the east coast (exceptAZ.) But everything will cost a lot to get the same option. Is there a cure or treatment that justifies the cost?

We tried stem cells because a bio lab from Korea has received the go ahead to offer a cure for alzheimer's in Japan by their version of the FDA. An I believe that the loading of the body with stem cells helps rid the body of amyloid plaque and for my wife may help cut down on the plaque as well as heal some damaged arteries.

Your comments are in some cases very hopeful in that my wife seems to bounce back after each seizer, but I am still very worried.

I hope we can use this as a way to help each other in finding new out of the box cures or therapy's.

Don't go calling just any stem cell company, ask me first. Some can only do what the FDA allows them to do. I used a US based lab but had to have the stem cells injected in Mexico (Cancun). We tried to replicate the Japan method. I believe we should see results in 4 to 6 weeks.

Keep your minds open and keep fighting.

I would be careful of any company offering stem cell cures for CAA. I have been diagnosed with the disease at Mayo in Rochester, MN. I have done quite a bit of reading about stem cell treatment for the disease and have determined that so far it is not a remedy and there are a lot of scams out there. I almost got scammed myself before doing some research. I was told when diagnosed, with CAA, that I have a ten percent chance of having a bleeding stroke each year and the best thing that I can do is to watch my blood pressure, to keep it as low as possible so that there is not excessive pressure on the blood vessels in my brain. That was two years ago and so far, so good. No strokes. I think it may be helpful to try and line up a neurologist for your wife. That’s what I have done thinking that if there is some sort of breakthrough in research for a cure that they might hear about it. I am 76 and have had a good life. If I have to go-so be it.