Constant pain from 4.4 cm ascending Aortic aneurysm

I’m sorry to hear about the challenges you’re facing with your ascending aortic aneurysm and the accompanying symptoms. While I am not a doctor, as someone who has survived a life-threatening Type A aortic dissection, I can share some insights that might help you navigate this difficult situation and advocate for the care you need. Although it is often said that aneurysms themselves do not typically cause pain, your persistent and worsening chest pressure should not be dismissed. Pain can sometimes be a signal of increased stress on the aorta, potential growth of the aneurysm, or even changes in the aortic wall. Given the combination of chest pain, shortness of breath, and a known aneurysm, you should seek urgent medical attention to rule out any progression of the condition.

Persistent and worsening chest pain should always be evaluated. While some doctors may attribute it to unrelated causes (e.g., musculoskeletal or anxiety), it’s critical to ensure it isn’t a sign of a more serious issue like impending dissection. Shortness of breath, especially after mild activity, could indicate additional cardiovascular strain or complications. You should be concerned if you experience:
- Sudden, sharp, or tearing chest or back pain (this could indicate a dissection).
- Shortness of breath that worsens or becomes more frequent.
- Symptoms like dizziness, fainting, or severe fatigue.

If any of these occur, DON'T WAIT. Go to the emergency room immediately and inform them about your aneurysm.

Pain Management and Monitoring
1. Medication:
- You mentioned your blood pressure is controlled below 120/80, which is excellent. Continue taking your prescribed medications (likely beta-blockers or ARBs) as they help reduce stress on the aortic wall.
- Ask your doctor about pain management options that are safe given your condition.

2. Imaging and Monitoring:
- Regular imaging (e.g., MRI or CT scans with contrast to enhance visualization) is critical to track the size and stability of your aneurysm. Be vigilant about scheduling follow-ups. I do one every single year but did them twice a year for the first three years to make sure that there were no changes to my aortic wall (CT with contrast).

3. Activity Levels:
- While staying active is important, avoid heavy lifting, intense aerobic exercise, or anything that significantly raises your blood pressure. Aortic aneurysms require careful management to prevent undue strain.

4. Genetic Counseling:
- Your mother’s history of a brain aneurysm makes genetic evaluation essential. Conditions like Loeys-Dietz syndrome or Marfan syndrome could predispose you to aneurysms and other connective tissue issues.

5. Surgical Intervention:
- While surgery is often considered when an ascending aneurysm reaches 5-5.5 cm in size, symptoms like worsening pain and shortness of breath might warrant earlier intervention. Get for a second opinion from an experienced aortic surgeon. Mayo, UT Houston, Cleveland Clinic, UCSD, University of Minnesota, etc.

What You Can Do Now
- Contact a Specialist: If possible, schedule a consultation with a vascular or cardiothoracic surgeon specializing in aortic conditions. Mayo Clinic or another high-volume center can provide expert advice.
- Emergency Plan: Familiarize yourself with symptoms of dissection and ensure local ER staff are aware of your condition. Google the Ritter Rules right now and make sure you and your loved ones understand them.

You are doing the right thing by seeking information and taking your condition seriously. Pain, though commonly dismissed, can be an important signal, and it’s your right to demand thorough evaluation and care. Don’t hesitate to advocate for yourself and seek opinions from experts in aortic diseases. Peace.

Thank you! This is incredibly kind and valuable information.

My last MRI was December 3rd. Genetic Counseling will not happen until March 15, 2025. I pray that I don't pass this along to my son.

All of this is so new. The meds are keeping my BP down, but causing a lot of side effects- including an over active bladder, which has not been fun.

I am in pain, but it isn't sharp get to the ER pain. It is a nagging pressure pain. My Cardiologist swears it isn't heart or aorta related, but I think I need another opinion.

Right now I would do anything for a good night sleep and a few hours of not being in pain.

I'd follow Moonboy's advice and get a second opinion asap for reassurance if nothing else. When I was first diagnosed, I had chest pain and was certain something was wrong. My cardiologist said it was muscular and I now think it was probably stress and anxiety, but you need to have your anxiety relieved. Don't just accept it. These things may be routine for our doctors but they're not routine for us and we deserve the attention we need. I'm always polite, compliant, and grateful, but I do ask for what I need. This group is quite literally a lifesaver.
Best wishes to you.

Totally agree with the comments & recommendations of Moonboy & Pamela78 above. Back and chest pain was what sent me to the ER. At least for the time being, the ER doc, primary care doc, and cardiologist all think the pain was not caused by the AAA. My primary care doc suspected the pain may have been caused by m gallbladder which can cause very similar symptoms. After an ultrasound and MRI, it was confirmed that I had a several moderate sized gallstones in m gallbladder. Apparently the gallstones causing the pain have been able to pass but my primary care doc and I are CAREFULLY observing both the AAA and gallbladder symptoms. Eccalif, I am not saying for sure this may be the case in your situation. What I am saying is that in the case of an AAA, out of an abundance of caution it is best to cover ALL the bases.

Pain is usually a sign that something is wrong, not necessarily your aneurysm, but something. It seems like it's been going on for a while. If your doctors aren't listening to you, I would find one who will. You need to keep your stress level down and this is not helping.
I woke up in August with a soreness low on the outside of my throat. When I touched my neck I could feel a pulsating vessel. When I leaned over I had upper chest pressure. I went to my then PCP. For 3 weeks she told me she wasn't concerned. I sent messages through their portal almost every day, because I knew something was wrong. Finally after 3 weeks she was going to order some tests, but I told her not to bother. That I had wasted enough time being neglected by her. I went to a cardiologist, who did an echo/stress and found the aneurysm. 4.2 cm. The CT angiogram showed that the aneurysm was displacing the large vessels in my chest. The vessel I was feeling was my right brachiocephalic artery. I have a very good cardiologist and a new PCP who both listen. I am very happy with my team. I see them every 6 months.
You need to find someone who will listen to you. You're asking for pain management. You need someone to find the cause of your pain. I wish you the best in finding a doctor who will listen to you and get you the treatment that you need.♥️

I just got back from a visit to the Cardiology unit at Mayo. It was wonderful. They went through all my previous tests and did a few more. Ascending aortic aneurysm 4.4 cm and aortic valve issues.

I also got my own genetic tests from Invitea. MD has to order it, but I paid for it. $250 for the Cinnective Tissue Panel test. It came back thar I am a carrier for the CBS gene. If you do, make sure to get the blood draw one as it is more accurate than saliva.

Happy New Year- donnagudrun

I'm glad you did the more comprehensive genetic tests. I am holding out for this too, but here is California, wait times are long.

I will see a Genetic specialist in March- and will ask for blood test vs. Saliva.

Here is to good health in 2025 🙂