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!
AVMS can absolutely be āhereditaryā if they are present due to HHT (Hereditary Hemorrhagic Telangiectasia). People with HHT can pass this genetic disease to their offspring and there is a 50-50 chance of each child having the disease even if only one parent has the disease. This is called autosomal dominant. Genetic blood testing can positively diagnose the disease, but most people with HHT suffer from chronic nosebleeds by the time they reach adulthood.
People who donāt have HHT can also be diagnosed with AVMs, but is extremely rare to have multiple organs affected or multiple cerebral AVMs. That is typical primarily of HHT patients.
They also get chronic nosebleeds by the time they reach adulthood.
My son was tested right away and I was so relieved he was negative.
I had a confirmed diagnosis of HHT in 2013 at age 55. I had 3 large pulmonary AVMs which were embolized successfully by Dr Justin McWilliams at UCLA. Six months later I had one of three cerebral AVMs surgically removed successfully. I have chosen to leave the other two alone - no surgery or gammaknife - they are in highly risky areas for deficits unlike the one that was removed. Thankfully, I have not had a bleed, nor do I suffer symptoms from these.
I donāt think about them bleeding as much as I used to. But every time I get a nosebleed, Iām remind of my disease. These happen every day, but Iām lucky they donāt last long and resolve fairly quickly. I sometimes think they are releasing pressure so the AVMs in my brain do not bleed.
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