Ascending aortic aneurysm with connective tissue disorder

Hello @wyomingmiller208,

I want to welcome you to Mayo Connect. I can understand your concern in wanting to find others who are also dealing with this diagnosis. Your doctor was very discerning in keeping you in the office until your blood pressure came down.

We have several discussions on this topic.
==Stress Management, High BP and Aortic Aneurisms, What We Can Do and Not Do
https://connect.mayoclinic.org/discussion/stress-management-high-blood-pressure-and-aortic-aneurisms/?commentsorder=newest#chv4-comment-stream-header
--Ascending Aortic Aneurysm and Exercise
https://connect.mayoclinic.org/discussion/ascending-aortic-aneurysm-and-exercise/
Also,
--Connective Tissue Disorder
https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/?pg=3#comment-56453
As you read through these discussion groups you can ask questions and get more information by hitting "Reply" and then responding to the member who posted.

You are asking good questions. Is your doctor giving you answers on restrictions related to exercise?

My doctors have been very helpful. My concern is that no one seems to be able to diagnose the connective tissue disorder. They only agree that the sheer number of surgeries and ruptures isn’t normal. I fear that the underlying problem will increase my chance of dissection. I have limited myself on much exercise at all since three of the major events have been during very modest exercise activity. Thank you for your efforts to steer me in the right direction.

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.

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.

They diagnosed my ctd through blood work. I thought I only had Sjogrens and then went to a new rheumatologist who ran multiple blood tests which showed I had undifferentiated connective tissue disease. He said its an overlap disease consisting of Lupus, vasculitis and Sjogrens as the primary in my case.
I've had rotator cuff tears but that is all. Have you been checked for Ehleros Danlos disease? Not sure if I am pronouncing it correctly but it is a genetic disease that can make aneurysms dissect prematurely?? At Mayo they checked me for it because it's genetic and can cause problems with aneurysms.

So far any blood work that has been done shows some signs of RA but nothing specific to Connective Tissue disorder. I will bring up the Ehleros Danilo to my family practitioner. I doubt they would find much as most of the symptoms aren’t present for me.

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.

I'm so grateful that they discovered it. It's hard to face at first but then you are glad you know so you can be careful. Be well

So I got the results of the CT today. I am going to wait until I see the cardiologist next week but the situation is serious.

Quote: “ Fusiform dilation of the ascending aorta measuring up to 46 mm at the tubular portion.”

I am guessing an almost 2 inch aneurism isn’t great news, coupled with the fact that it is directly adjacent to the heart. I am just going to enjoy life and hope for the best. Cheers to you all and Happy New Year! 🎆🎈🎊 God bless

Recovering well from heart cath to address the blockage in lower heart. Main arteries clear but small vessel disease is fairly wide spread. Three branches are between 60-90% blocked and one in addition to blockage had second aneurism. The blockage is at the junction of small vessels and main arteries, so it will require open heart surgery at some point. The aortic aneurism now measures 47 mm up almost three millimeters since first echo two months ago. Hopefully just more accurate measurements and not growing that fast.

I find myself doing the same things that have been mentioned. Every time my chest hurts or I have pains in belly or upper back I get nervous. I am at a loss as to what to do. My kids are being brave but are constantly watching me and listening to see how my breathing is and if I sound winded. It seems as though I now have two problems. The aneurism and the blockage which can’t be fixed with stents. So I wait to have a heart attack or the dissection of either aneurism. Live life like you were dying is more truth than ever. I love my life and know that Jesus Christ is the Savior of all. In the end those are the real things that matter, love of God and loving others.