@SBrentnall, and @Lunabear1988, @Knubbsy @BigMama1 @BootsAndCoffee, and any other EDS or connective tissue disease suffers:
My PSA:
Get an echo of your heart, regardless of age. Non-invasive ultrasound. Go find a cardiologist or get one of those LifeScans, but get a baseline!
Thoracic aortic aneurysms are non-symptomatic and associated with EDS and other connective tissue disorders. It is what killed John Ritter and Lucille Ball. When it dissects, it is 80% fatal. If you are a 20% survivor, your life has complications from the dissection.
If you have one, it can be monitored for growth, and appropriate surgery (open heart) at the appropriate time. Post surgery there are NO RESTRICTIONS, and you life goes on as normal.
Mine was discovered incidental to a breast cancer xray at 7cm. Normal is 3.2cm. Most dissect at 5.3cm. It pushed my heart out of position, but I didn’t feel a thing – continued to ride and do barn chores.
Once dx’d, I wasn’t even allowed to go home, sent directly to UCLA, surgery was two days later. I was back riding my horse at 4 months. I am 65, that happened two years ago.
For what it is worth, TAAs are also associated with BAV (bileaflet valve) – something about the way the aortic tissue forms that missing a leaflet makes other parts a little stretchy.
Most of us don’t think of needing a cardiologist until we have a problem, but mine says most should get a baseline at age 50. And if you have EDS et al, you should be monitored for a lifetime, and your immediate family genetically tested.
Okay, PSA turned off now, lol.