GCA and aneurysms

[luv2read]

I had a chest CT scan and read the results on MyChart. They found a 4.6 aneurysmal dilation in my ascending aorta. I sent a message to my doctor yesterday regarding this and I have heard nothing! I’m quite anxious and surprised to not have heard anything back yet. I guess I’m just wondering if my feelings are justified here. Any test results that have the word aneurysm should at least get a phone call from the doctor right? I did do some research and found out that GCA and aneurysms go together, plus any hereditary traits can increase the risk of bursting. My sister died of an aneurysm when she was 44. What would you recommend I do at this point? I’m just freaking out about this 24/7! 🙁

[Grammy80]

Hi, A few days ago, I had a CT Scan of the abdomen and saw the same word, only not the same measurement; mine is the abdominal aorta.

My 63-year-old son had surgery two years ago at Northwestern Hospital in Chicago for a 5.2 aneurysm on the ascending aorta with excellent results. His was also found by accident, as many are, about 18 months before surgery. Because of lung issues and obesity, they watched it regularly. I would contact a cardiologist and be evaluated. I must tell you, my son is still obese and went to cardiac rehab but never walked like the Drs. told him to. He has done so well despite himself.

I'm in Indiana and have My Chart; we often see the results before the doctor. Please let me, all of us, know how you get on. My best to you💞

[luv2read in reply to Grammy80]

Thank you for the positive insight! Good luck to you too and I will definitely keep you posted.

[PMRpro Ambassador]

bhf.org.uk/informationsuppo...

At this stage they will probably monitor you - it is a sort of borderline size and probably more of a risk to operate on it than to leave it. They monitor to see if it grows to the point the risk is more balanced. In Europe I'm pretty sure you would have been checked out with a familial history like yours but you haven't been. There is no point in panicking - and yes, I know it is easy for me to say - you are in no different situation as last week, just you know about it. They are in a position to choose their time for the surgery and as Grammy80 says, the results these days are amazing.

[luv2read in reply to PMRpro]

I know you are right, but my heart feels like it’s beating out of my chest since I’ve found out. It’s funny what the mind can do to you. I can only hold off until I hear from the doctor, which takes my control away and I hate that 😬

[PMRpro Ambassador in reply to luv2read]

Of course you feel awful - it is scary, especially since your sister had one so young. And it is always the weekend isn't it!!! If it had been bigger they probably would have called you - so that is actually a good thing, it isn't an emergency because they don't always have good outcomes.

Lots of hugs - it will be fine. xxx

[Brantuk]

Hi luv2read. The rate of growth of your ascending aorta is the important thing here, in deciding wether surgery is necessary. It needs to be monitored regularly (at least annualy) and if it goes over 5cm diameter the cardiologist will start talking about medical intervention. Mine went over 5.5cm when they decided I should have the op, and that was back in 2018. I'm still alive and the plastic tube in my chest will last the rest of my natural life thank goodness. At 4.6cm you have plenty of time to monitor before a decision is necessary, but do keep an eye on it. I'm pretty sure GCA contributed significantly to weakening my aorta causing aneurysm growth. Signs to watch for are breathlessness, early burning muscles when taking exercise, and accellerated heartbeat, mine woke me up at 122bpm in the middle of night. Naturally I called for an ambulance , it was scary.

[luv2read in reply to Brantuk]

Very scary! Hopefully it will not get to that point.

I’m just afraid that the doctor won’t take into consideration my GCA and family history and just tell me that they will monitor it. Not that I want to put myself in danger having a procedure that they want me to wait for, but what is the difference between waiting for it to grow and being proactive and having it done now?

Thanks for sharing your story and I’m so glad that you are healthy now

[PMRpro Ambassador in reply to luv2read]

As I explained - the balance of risk of a major openheart surgery if that is the option required and the risk from the aneurysm. Not all aneurysms increase to a dangerous size and all surgery has a degree of risk. But first they have to assess the risk and options for your aneurysm.

[Miacaro45]

I certainly can understand your anxiousness. My husband’s family all have aneurysms. My husband had 14 operations for aneurysms. When we were living in NY he was being watched for a 4.6 aorta aneurysm. We moved to Georgia the new cardio thoracic surgeon said (on the first visit) why did you not have this aneurysm taken out? My husband told him that the NY doctor said to watch it. This new doctor said you are not old, fairly healthy and can withstand an operation so get it out. Wow! We never looked at things this way. My husband went for the operation and all went extremely well. An aneurysm is like a ticking bomb. Find an excellent cardio thoracic surgeon with lots of experience and have a serious talk. All the best to you.

[AtopicGuy]

The link below is from a peer-reviewed journal in Cleveland, Ohio. In the section titled "Screening of family members" it says:

"In our center, we routinely recommend screening of all first-degree relatives of patients with TAA [thoracic aortic aneurism]. Aortic imaging with echocardiography plus CT or MRI should be considered to detect asymptomatic disease. In patients with a strong family history (ie, multiple relatives affected with aortic aneurysm, dissection, or sudden cardiac death), genetic screening and testing for known mutations are recommended for the patient as well as for the family members."

ccjm.org/content/85/6/481

[RiviS7]

I can understand completely being freaked out and scared, especially because of your sister. I'm so sorry you lost your sister because of an aneurysm. It's really good that the doctors saw this and know now. I'm sure they will help you.

I have two aneurysms in my gastroduendenal artery. I guess what I have is extremely rare and it doesn't matter how little they are. It has taken me a long time to not feel scared all the time about it. Now I feel like I can handle it better because I have scans done every year to two years and it is closely monitored. I wish the best for you luv2read.

[luv2read]

Thank you for your good wishes!

I was sent to a doctor at the university in Iowa City. He said it is a complex case due to my GCA and wanted to take it to the Vascular risk assessment panel. I asked if it was just him deciding, he wanted to operate. Long story short, I still have no answer! He now wants me to get genetic testing done. Why, I don’t know. He never talked with me about it and what could possibly deter there decisions about surgery or watching it closely from a genetic test? I’m very frustrated and riddled with anxiety still. I am so glad that you are handling yours better than me. I wish you nothing but the best!!😍

[KellyInTexas]

hi luv2read,

I found out in spring 2022 the I have a genetic mutation ( variant) on the 14th chromosome called Loeys- Dietz syndrome. ( TGFB3) . Its TYPE 5

It’s a a collagen signaling problem.

My mother died of this.

Surgery is recommended at 4.5 cm as a rule.

I can link you to a great resource here.

loeysdietz.org