Aortic Aneurysms – Introduce yourself & meet others

Thank you, Bev, I’m 81 and really appreciate your reply. We sound like two peas in a pod. I do not have much trust in the doctors today as for eight or nine years I was taking several supplements that produced nitro oxide, and they all knew it, but until I looked it up myself and find out that you never take nitro oxide supplements with an aneurysm as it weakens the elasticity in your aorta, my game plan is to ride it out. Do nothing and hope it’s quick.

I don't understand why you can't get the information you want/need. That makes no sense to me. I don't know who to direct a complaint to but this seems complaint-worthy to me. Of course, we should be able to find out about the surgeons who are going to open us up. If you don't get satisfaction from one place, go to another until you get answers. Duke? Chapel Hill?

At 4.1 cm you are far away from the critical zone, they start becoming concerning as they approach 5 cms. Growth rates vary by each person, depending how slow it grows it may never get to the critical zone, you should find an aortic disease specialist (cardiologist) to consult. He/she will establish a proper periodical evaluation, the frequency will depend again on growth rates and other factors. Again, not all cardiologists are specialists on aneurysms, you want to find one who is, it will make a big difference.

Yes it was open heart, for ascending (thoracic) aortic aneurysms, it is currently the only effective way to repair the aorta. It involves replacing the aneurysm section with a graft, that can only be done by opening the chest for access. You should be able to find “cardio thoracic surgeons” by doing a search and then find reviews, you want the best, most experienced surgeon you can find. Mine was recommended by my PCP, he took the time to find the best and referred me to him. He was right, my surgeon was not only probably the best in Houston but also a wonderful person, he took his time to explain everything and answer all my questions, I’m sure you can find someone like that near you

Diagnosed with Thoracic Aneurysm at 4.1 cm. Cardiologist not currently concerned. I'm 76 and wondering if this is normal to wait and see?

Thank you the reply. Was your procedure open heart?
I have calls in to three major hospitals in Raleigh, NC, but there seems to be a requirement to have an appointment to find out if the surgeon does the specific procedure I am seeking...I would rather know aforehand. I will also seek guidance from an established cardiologist who may know specialists.

Go to the cardiology web sites in the hospitals near you or that you’re interested in, look at the providers and their profiles, most Dr profiles will have a section with clinical interests or research interests. For example the profile of my cardiologist says:
CLINICAL INTERESTS:
Adult Congenital Heart Disease
Bicuspid Aortic Valve
Thoracic Aortic Aneurysm
With that I know this Dr specializes in what I’m interested in. BTW in my case he truly is, my cardiologist is an aneurysm/aortic valve nerd which has been incredibly helpful (I had an ascending aortic aneurysm which was repaired and a bicuspid valve which will need replacing at some point in the future)

At 80, I feel great. However, the cardiac surgeon suggests open heart to fix a regurgitating aortic valve and, while he's there, to replace a 4.5 cm ascending aorta. I am looking for another, less invasive, solution but finding a cardiologist/surgeon/counselor who understands the options AND Medicare insurance reimbursement is near to impossible here in Raleigh, NC. How do I go about identifying sources/resources with aortic valve/ascending aorta experience? Thank you.

Hello,

I am brand new to this group and not even sure that I am starting on this support group at the proper place. This is my first online support group ever.

I am 63 years old, very active, asymptomatic, work 25 hours a week at least, but have a concerning future ahead.

I just reached out and sent my records to the Mayo Clinic in Jacksonville, Florida.

My diagnoses: congenital bicuspid aortic valve (should be tricuspid) with 4.0 ascending aortic aneurysm growing annually at 0.1cm rate. Complicated by undifferentiated connective tissue disease (UCTD) and thankfully in remission since 2023.

I need an interventional cardiac surgeon with UCTD experience. Does anyone know of a Mayo Clinic intervention/cardiac surgeon like that?

Also, my cardiologist told me that those of us with UCTD have a window of time when connective tissue can be sewn up in surgery. Do we know when that time is? Is it related to our heart ejection fraction? When does my opportunity for surgery cease?

These are the questions that buzz around in my head way too much.

Thanks,
Kay

Viperron, I think it is normal to have daily fear when you know you have no control of when the rupture might occur. I too think of the difficulty of surgery and the healing time since I am 77 years old. How old are you Viperron? I do believe in Quality of life over Quantity of life. However, I really haet the thought of my loved ones mourning my death so deeply when I am gone. I saw their trauma whe their Dad, Grandfather sudenly passed away at 63. The greatgrandsons never knew their great grandad but hear us talk about him. I am the only parent and grandparent left. I wish the FDA would approve the TEVAR graft for an ascending aortic aneurysm using the femoral insertion (closed surgery) method. Cardiothoracic surgeon and Pumonologist all agree that I am at very high risk of not making it through the AAA open heart surgery. God is so good and I do feel blessed to be aware that I have limited days on earth and that I must get my "ducks in a row" for the benefit of my loved ones. As to when the rupture takes place, I just pray that I don't suffer pain for long or that some HERO decides to try to save me and I end up in a wheelchair at best for the remainder of my life. Quality over Qantity. May God help us BOTH thru all of this.