Aortic Aneurysms – Introduce yourself & meet others

Hi there.
I am a 56 year old woman, mother, wife, business woman informed by email following a CT scan to investigate potential Hernia in January of my condition, 'chronic dissection of the infrarenal aorta' and will see consultant in May 2025 (first available appointment).
Am on a last minute availability list too. Very very frightened as I have really had no-one to speak to about this and still have no specifics on my situation or proposal as to what to do next. Did try Dr Google in the absence of any other medical aid but will leave that one alone to avoid generating more stress.

Kaket, I relate to your post. I am a retired jock, played many sports at high levels. So, my descending thoric aortic aneurysm was 5.5, and my surgeon felt I should have surgery. But I chose not to because of the possible side effects, and my age. I am 77. But I decided I wanted to field grounders while my grandson worked on his tennis serve. I got my softball glove out and had the most fun ever. I was much better than I thought I could be at this age. It all came back to me. adrenaline rush and pure joy. Well I knew something was different after three months. I went back for a scan and my aneurysm had grown from 5.5 to 6.3. I will tell you it was worth it but I have stopped being so active, and I guess I may have used up one year or so from my fun experience. So, choose carefully. I would do it again, it was that fun. Once a jock always a jock.

I am a lady, 5'3" tall. I am 77 years old, and my descending aortic aneurysm is 6.3. I also have an ascending aortic aneurysm that is 5.3 and abdominal aneurysm that is 3.6. I have chosen to not have surgery because I was advised that the outcome of surgery at my age is not good. So, I was told I have 3 to 6 months or maybe 12 months, but probably not. So, as weeks go by, I am past the 3 months prediction, so now I am going for 6. I am having all the symptoms that go with large aneurysms, cough, pain in chest, back pain, fatigue, and lump in my throat, Does anyone know anything else about living this out. I get another scan at the end of March, which will give me an idea of how long I have. I am at peace with this, because I know where I am going and who I will be with, but I would like to know how close I am to leaving this earth. I love my husband and family. They are supportive and I have 4 children and 11 grand children and one great grandson, being born as I am typing.

I'm 60 years old now. I suffered a complete aortic dissection in 2015 at at 50. I would tell you that I would not be doing anything which involves HIIT, impact (kickboxing, judo, etc.), valsalva maneuvers, grunting, deadlifts, heavy weights, planking, or the like. Get a good thoracic surgeon and put them in your Iphone's favorites. LISTEN TO YOUR SURGICAL TEAM. They know. If the person giving you advice is not either an aortic dissection survivor or a thoracic aortic specialist, they are guesstimating. You've come to the right place. Peace.

Hello,

I've only had two scans so far, Sept '24 and Oct '24. 1st scan was a CT Calcium Score (29 on the LAD, 0 elsewhere) showed 3.9 cm on the ascending aorta. Oct follow-up was a Echocardiogram which showed 4.3 cm. Now I am scheduled for a full CT Angio of my chest for early June '25. I'm on a statin ever since the CT Calcium score, but no pressure meds yet since I do not normally run high. I exercise nearly every day (modified to low weights after cardiologist scolding) and I play competitive volleyball, although not as often or as serious currently as I am now 53 and can't keep up with the younger crowd anymore.

Considering my numbers, I am in the watchful waiting period and I think I have started to come to grips with that. Reading everyone's stories on this board have certainly helped by answering many of my questions and giving me a better perspective - A big "Thank you" to the group in general for that support.

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

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.

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.

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 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