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@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.
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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.