Shalon is right, my husband had an avm removed in 2011, then in May of 2015 his granddaughter was diagnosed with one while she was 7 months pregnant, at that time his relative told him that is what his dad died of. All was due to HHT, I am now trying to find out more about HHT, but I cannot find anyone in our area that is able to do the testing or the research for it. I really am trying to find someone to help them. No one seems to be willing, tried the HHT people but they are no help.
I have just reread this thread and am totally amazed at what people are saying. If you have AVMs and you know that they are part of a disease then why are you not getting tested for that disease. It took ten years for me before I was genetically tested for Cowdens as no-one had developed the testing. I had my children and knew nothing about the disease that I had. If I had known I would not have had children. I would not have subjected them to this problem. Luckily one of my children has been tested and the other has shown no signs or symptoms. I did not learn that AVMs were part of Cowdens until 7 years ago when I had a lump surgically removed from the sole of my foot. I was then tested and the vascular surgeon that I was sent to was very knowledgeable about the various anomalies. He has been great. He will not remove my foot until it gets to the point where I can no longer bear the pain. I have 6 AVMs in the sole of my right foot that have joined up to make one large AVM. He can't operate because they are all joined together. I live with this but it doesn't mean that I am giving up. Don't give up. Find something to occupy your mind and focus on that. Perhaps you should listen to Christine and realise that she is only telling you the story to try and help. Please realise that some people want to help.
I am sure that everyone on this forem is just trying to help. I have a brain AVM and so does my mother. My mother is 87 - years old and has never had any symtoms. She fell and hit her head while on a blood thinner this is when we found out she had the AVM on the other hand I had seizures which are under control with medicine. My mother's father died of a stroke which I suspect was due to an AVM. Givin these facts I believe that the brain AVM is hereditary. I do not know what has caused this but it will come to an end because my sister and I have no children which now I am greatful for as I would not want anyone to go thorugh what I have gone through.
I offer this study:
Prayers for us all!