Aortic Aneurysms – Introduce yourself & meet others

Hi there, I just joined this group as I was recently diagnosed with a 4cm ascending aortic aneurysm. I have an appointment with a cardiologist next month, but have a trip planned prior. Is it ok to fly?

Thank you😊❤️

Hello all!

A year ago, after a calcium scan, my primary care doc connected me with a cardiologist and had me do an echo and CT scan. Those tests revealed a 4.5 cm ascending aortic aneurysm and some mild to moderate regurgitation. There is some question as to if I have a bicuspid valve, or a fused tri-leaflet valve.

My cardiologist and cardiothoracic surgeon said surgery wasn't immediately necessary. I'm a mid-50s M. They put my on a high dose of statin and a beta blocker and boosted my BP medication. (I've had hypertension for a few years.)

Fast forward to today. I just got my results from my echo from last week (still awaiting the CT scan results) According to the raw data in the echo, my AAA is now 4.6 cm and I now have a Sinus of Valsalva Aneurysm of 4.4 cm.

In addition to the results of the CT scan, I am awaiting analysis from my cardiologist and CT surgeon.

In the meantime I am a bit concerned. Would love your thoughts. Anyone else experience this?

Mine was found at 5.2 cm after a MTB accident, also in my 50s, I do have a bicuspid valve which they are known for contributing to aneurysms (I knew about the valve before the aneurysm was discovered). I had surgery to repair aneurym 3 months after my leg surgery (from accident) as my aneurysm was large already and there was family history of burst aneurysms (they did not replace my valve as it was still highly functional). Do you know why they gave you statins? They gave them to me because there were some studies suggesting hey help reduce the possibilty of BAV calcification, not because of cholesterol. Over time I started getting muscle pain after exercised (I exercise quite often) and after consulting with Cardiologist he said could be the statins and asked me to stop them to see, he said the studies were less conclusive about whether they helped the valve anyway. I stopped them and after a while the pain went away. If yours is due to cholesterol that is a diferent story.

Anyway, you aneurysm is still on the small side, they get critical when they approach 5 cm (I've heard of people having surgery at 4.8 though, it depends on many factors). In the mean time, my recommendation is to keep yourself healthy, treat your body well, exercise, if you smoke stop, you want your body at its best for when and if you need surgery. Manage your BP, that's what the betablockers are for, but exercise helps even more.

It has been 5 years since surgery and I'm doing very well.

If you have more questions let me know, all the best to you!!!

hey there, I ask my cardiologist that very question and he said yes it fine to fly

I got a letter stating that my cardiologist is/has retired. When I told my primary care doctorthis info he was surprised to hear it(we live in a relativly small town in north centeral Wa). I have been was not referred to another Dr and my repeated efforts to get an appointment with one on my own have been unsuccessful. The valley we live in has been notorious for Dr's leaving due to conflicts with the healthcare entity that has pretty much taken over all the Dr's and the only hospital here. When asking to see another cariologist I have been told that medicare has strict rules regarding visits other than prescribed,meaning even if I can get an appointment I may be charged out of pocket. I am feeling that I need to head for Seattle or Spokane to seek better care. Do I have to get a referal ?Do I just start calling? How much will an out of pocket visit cost?

Hello my name is Tina, I am thankful to have a space to share and learn among individuals experiencing the same challenge that I am. It's nice to have a trusted medical professional to provide guidance as well. Blessing to all as we share this journey together. #thankful

Hi,
I am 63, diagnosed with Marfans 30 years ago. My aortic root has been enlarging very slowly but is now 4.2 per last ECHO. I am grateful to have found a place to share and learn about others’ experiences.

Hello,
I am 74.
I was diagnosed with Abdominal AORTIC ANEURYSM in 2016.
My Cardiologist & Vascular Surgeon said that my aneurism is inoperable because of the and the organs that will be affected by the surgery. The aneurism has grown to 8.2 and could rupture at any time, with fatal outcome. I would like to source to see if I can find a surgeon that might perhaps be able to help me. But I don't know how to go about it. I welcome any ideas or suggestions from this group.
I am happy to be part of the group, to share and learn from others who have this health challenge.

That’s a really difficult place to be, and I understand the fear that comes with hearing that your aneurysm is considered inoperable. I suddenly dissected in 2015, and it was a nightmare. I wish I had known I had a problem before that, but the fact that you do know means you still have options. Even with a large aneurysm, there may be advanced surgical or interventional options available, especially at high-volume aortic centers.

A good starting point is looking for aortic centers of excellence—places like the Cleveland Clinic, Mayo Clinic, U of M Minneapolis, UCSD La Jolla and other major academic medical centers with dedicated vascular and aortic teams. Some of the most experienced surgeons in the world are there, and they may be able to offer a second opinion, even if your local team considers the surgery too risky.

I know it’s overwhelming to navigate this, but you’re not alone. Keep pushing for answers, ask about endovascular options, and don’t be afraid to seek out a second or even third opinion. You deserve the best care possible. Peace.

Thank you so kindly for your advice. I will check out the aortic clinics you mentioned.