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Ascending aortic aneurysm with connective tissue disorder
Aortic Aneurysms | Last Active: Jan 8, 2023 | Replies (10)Comment receiving replies
I have connective tissue disease and also a thoracic ascending aneurysm and like you I also wondered if that would make me more susceptible to disection, The cardiologist I see once every 2 years assured me that the ctd has nothing to do with the aneurysm. But mine has continued to grow and I'm not happy about that. It's a very scary thing to me. For maybe 2 years I was scared to death of it. Every time I get a pain in my upper back I worry. But eventually I've come to realize that I'm just going to continue living my life as long as God wants me to. I've mostly stopped worrying about it. It doesn't help and may in fact make it worse since they say to keep stress levels low. Even though I go to Mayo for observation and one day maybe a repair I've read the best info on the Cleveland Clinic website. They explain everything very well since my Dr. at Mayo does not. Good luck and I pray soon you'll just be one of us running around with a timebomb in our chests but not paying it much attention. After all at least we are lucky enough to know we have it and we could die just crossing the street.
Replies to "I have connective tissue disease and also a thoracic ascending aneurysm and like you I also..."
You are exactly right! Knowing is very important.
My husband has an ascending aortic aneurysm (4.8 cm), which seems to be stable. I suspected this was genetic although no one believed me. But then ----
his first cousin (same age (78), male, maternal side, presumably healthy) collapsed last July on the bedroom floor. He arrested. His wife called 911 and their daughter, who is an EMT. The daughter lived closer and got there first to revive him. He was airlifted to ANW where they did a successful repair. Two days later he developed a clot, which went to his brain. The result is a useless right side; short term memory and vision problems.
This guy had NO clue. He walked three miles a day and lifted weights.
Primary care physicians are supposed to order electrocardiograms if their patients have any high blood pressure issues. (I do not know about this cousin.) But that is how my husband's was discovered. A new (for my husband) Mayo cardiologist ordered one. We are so grateful to him.
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Jeebs
Thanks for the response. I am already growing accustomed to the idea that it is going to be ok until one day when it isn’t. 😉. I am making a clear effort to avoid stress as much at all gives me mild chest pain.
I have a pain in my upper back almost nonstop due to a 3 x torn rotator cuff that is so bad now that the shoulder blade sags due to only support from the muscle attached to the spine. Everything holding it up from the top is shredded again.
How did they diagnose your CTD? What tests did they run? I have torn the right shoulder three time and the left once. The right is torn again I am certain. The left was so bad I had to reattach the bicep and cut the collar bone down due to impingement. Shredded the tibials tendon and ligament in right foot from standing up from a chair. Complete rupture of the anterior tibial tendon right leg and walked on it for two years until I finally couldn’t walk more than 50 steps without being in severe pain. Cervical fusion and torn abdominal muscle.
How big is your aneurysm and what did it start out at?
If they repair do they cut it out and replace the tissue or do they use stints to strengthen the area?
Life is good.