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Ascending thoracic aneurysm: What should I do and not do?
Aortic Aneurysms | Last Active: Feb 24 7:14am | Replies (72)Comment receiving replies
Hi GratefulEveryDay! This LOX defect is very very interesting. My brother and I both have ascending aneurysms. He just got his genetic study (no results yet), and my study happens next month. I have no cardiovascular risk factors, but do have weird vascular spasm events. I see my cardiologist in two weeks to get the aorta measured again, and all the arteries looked at. Is there a good source for info on this LOX? I am looking on the National library of medicine site at this point. Thank you for sharing this!!! Very relevant!
Replies to "Hi GratefulEveryDay! This LOX defect is very very interesting. My brother and I both have ascending..."
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The ACC/AHA held an aortic disease conference in Sept 22. A major outcome of this meeting was the recommendation that first degree relatives get screened.
Interesting that they identified the gene for you. My husband had genetic testing and an exam last July (2023). The results were negative for connective tissue disorders. His first cousin, same age, also male, had a dissection in July 2022. His aneurysm was mid level ascending - same place as my husband's. This cousin's father died from "massive internal unstoppable bleeding." No cause was ever identified but we are thinking "aneurysm." My husband's mother had giant cell arteritis and two cerebrovascular strokes - also implicated in all this
I write this history because the ACC/AHA report stated that only about 20 percent of genetic mutations have been identified.
You can download this massive report for free, which has genetic aberations identified and discussed in more detail than I can understand. Just google ACA/AHA Aortic Disease Conference Sept 2022. Downloading it is difficult because you have to do it 10 pages at a time.