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Cerebral amyloid angiopathy
My wife has just been diagnosed with this disease ! I would like to talk to someone who has some experience with this disease
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@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.
Hi Thanks for your reply and correction!I should have used Cerebral!My wife is almost 78 She has had a few smaller bleeds over the last few years and 2 larger bleeds in the last 3 months after which she has been diagnosed with the disease.Any idea of what the future might hold from your past experience with your family??
@gbiffart Hi, friend. Glad I could help a little. By the way, I am 77. I bleed a lot, so just know that this is part of the pattern. Most of mine is haematurine, but I also bleed in various other places. Small drops which just bleed under the skin are petechiae, which leave little red or purple spots under the skin. I am getting them all over my body now. So did the others. Dementia is about the same as Alzheimer’s. Peripheral neuropathy is the same. The stuff is probably Gelsolin or Cystatin-C Amyloidosis, but get May or B&W or Stanford or another strong center to do the diagnosis. It is not enough to have your local center dX, unless your local center is Mayo-Rochester. The fibrils get into the sensori-motor nerves, just like they do into the brain. The cornea begins to appear from the inside like looking through rippling waters. Usually these waves are vertical. Reading becomes difficult. This is, so far, always fatal, but at 77 or 78, not too surprising, although some centers are working on clinical trials that might extend and improve life a few months. Be sure to have the regular checks for LCDD (sFLC, 24 hr urine, etc.) The big thing is to learn to manage this monster. Read the stuff from Mayo and others. The best are the videos (grand rounds) from Mayo, B&W, Stanford, etc. Especially the “What you need to know”, etc. Martha Grogan and Angela Dispenzieri may be the best. Do get on to http://www.amyloidosis.org. Well, that is enough for now.
Hang in there. It is tough, but you and your wife gotta fight together.
My mother was diagnosed with Cerebral Amyloid Angiopathy in 2008 at the Mayo Clinic. She has had a few more minor bleeds since that have affected her sight, walking and cognitive thinking over the years. Usually a lot of rest helps to get her back to her new normal. There have been challenges, but nothing as bad as we once feared. She has been in Assisted Living since 2014. She is now 81 years old and overall, as I said, with keeping the blood pressure low, good food and exercise (had both knees replaced separately over a year ago) she is doing remarkably well.
Hi Thanks for the information.My wife is 78 and doing remarkably well since her first 2bleeds
Good to hear that this can give us hope for a few more years
I was diagnosed with CAA in May of 2027 at Mayo in Rochester, MN. Simply post or send me a private message, if you need to talk with me about my illness.
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