Aortic Aneurysms – Introduce yourself & meet others

This online support group is a godsend. Visit it frequently and you'll know you and your daughter are not alone. I wish you well as you face these challenges. Also, listen to Moonboy.

Thank you

This is a repeat post since I accidently put it in the wrong spot. I’m so sorry to hear about your daughter’s condition—it sounds incredibly difficult, and I can understand why you’re feeling concerned. Get a second opinion. Seeking another opinion from specialists, especially at a major medical center or academic hospital, could provide new insights. Some places, like the Mayo Clinic or Cleveland Clinic, have teams that focus on complex cases like hers. Even if surgery isn’t an option right now, it’s important to make sure her doctors are exploring every possible way to manage her condition without surgery. Keeping your daughter's blood pressure controlled and monitoring her closely are key. I get annual CT scans for my dissected aorta repaired with a graft in 2015. It gives me a lot of reassurance that things are stable. I know this is overwhelming, but do not be afraid to ask her care team tough questions or even look into clinical trials. Sometimes those can offer options that are not widely available. In addition, she is likely to qualify for permanent SS disability insurance so find a good SSDI lawyer in a major city near you and apply today. That would help from a financial perspective AND a health perspective if she's currently under a workload stress. Finally, don’t underestimate the importance of emotional support—both for her and for you. Talking with a counselor or connecting with support groups can make a big difference in getting through something this challenging. Peace.

I’m so sorry to hear about your daughter’s condition—it sounds incredibly difficult, and I can understand why you’re feeling concerned. Get a second opinion. Seeking a second opinion from specialists, especially at a major medical center or academic hospital, could provide new insights. Some places, like the Mayo Clinic or Cleveland Clinic, have teams that focus on complex cases like hers. Even if surgery isn’t an option right now, it’s important to make sure her doctors are exploring every possible way to manage her condition without surgery. Keeping her blood pressure controlled and monitoring her closely are key. I get annual CT scans for my dissected aorta repaired with a graft in 2015. It gives me a lot of reassurance that things are stable. I know this is overwhelming, but don’t be afraid to ask her care team tough questions or even look into clinical trials. Sometimes those can offer options that aren’t widely available. In addition, she is likely to qualify for permanent SS disability insurance so find a good SSDI lawyer in a major city near you and apply today. That would help from a financial perspective AND a health perspective if she's currently under a workload stress. Finally, don’t underestimate the importance of emotional support—both for her and for you. Talking with a counselor or connecting with support groups can make a big difference in getting through something this challenging. Peace.

Hi, my name is Tammy. My daughter has arotic aneurysm plus 2 brain aneurysm. One in the back of neck and other in temple part. Doctors won't do surgery, they say it is to dangerous now she has another in arotic , just concerned for her. I don't know what to do to help her. Any suggestions?

My name is Tom and just got some results back...I am worried about Proximal Abdominal Aortic Aneurysm with BP of 110/80. Any advice for similar folks?

I was diagnosed with a 4.5cm aortic root aneursym 7 years ago when i was also had emergency open heart surgery for a Type A aortic dissection. I had a lot of CT scans the first year and recently reduced them to every two years. So far, my aneursym hasn't grown.

I felt the same as you at first and occasionally still do. I'm acutely aware that i have this aneursym but don't worry about it regularly and live a pretty normal life. I fly, i travel by car, i hike sometimes, i walk several miles pretty regularly.

I used to work out pretty hard at the gym (maybe that contributed to my aneurysm and dissection? ).

My surgeon said i can lift light to moderate weights at the gym and can even go jogging. No sprinting to catch the bus and no heavy weightlifting, though. I take carvedilol and losartan daily.

Yeah, it's scary to think about and i share your feeling of having a ticking time bomb in my chest, but i'm following my surgeon's recommendations and after seven years with no growth i figure I must be doing something right or have been very lucky so far (a mix of both, I'm sure).

Don't spend too much time worrying about it. Follow your doctor's advice, keep your bp under control, and get regular CT scans to keep a watchful eye on your aneurysm. Otherwise, live your life as normally as you can.

Eileen, I have flown multiple times since I found out about my TAA (4.3) including across country. I also have enjoyed cruises and land vacation. At first I was so worried I almost just locked myself down and then my family reminded me I always said it would be better to enjoy life then sit worrying. So I took my own advice. Go on your trip, and have a great time! A hug to give you the strength you need to take those first steps. Forgot to tell you I am 73.

Hi @een3 ,
I have flown to Mayo, Rochester 5 times for care, including for my annual scan of my aneurysm.
I was very sick with Covid in 2020 and place on oxygen. I flew to Mayo in 2022 for a Cardiology evaluation. I had lung surgery recently at Mayo and flew there for surgery and home two days later. My aneurysm is stable.

I was nervous on my first trip, but now I fly by myself with oxygen, and I have heart failure, atrial fibrillation, tricuspid valve regurgitation, pulmonary hypertension, and the aortic aneurysm.

My heart and lung conditions are stable or improving. I feel better after I started following the guidelines in the books " Eat to Beat Disease" by Dr William Li and "Good Energy" by Dr Calley Means".

Update:
I always request a wheelchair when purchasing my airline tickets. It makes the trip go smoothly. Allow extra time to get the wheelchair and through security.

Eileen

I understand how a thoracic aortic aneurysm (TAA) of 4.5 cm can make you feel like you’re facing a difficult and anxiety-inducing situation. First, let’s address the core concerns:

1. Understanding the Size of Your Aneurysm: A 4.5 cm aneurysm is considered moderate in size. Surgery is generally recommended when an aneurysm reaches 5.0 to 5.5 cm, depending on various factors, including your overall health and whether you have connective tissue disorders or a family history of aortic dissections. At 4.5 cm, you’re below the typical threshold for surgery, but it’s important to closely monitor your condition with regular imaging and follow-ups with your healthcare provider.
2. Flying with a TAA: For many patients with aneurysms in this size range, flying is generally safe, but I understand your anxiety about it. The key concerns with air travel are blood pressure control and stress management, as changes in altitude can affect both. However, modern airplanes are pressurized to limit drastic changes that would affect your blood pressure. Here’s what I’d recommend:
• Consult with Your Cardiologist: Before you make any decisions, it’s vital to check in with your doctor to ensure they’re comfortable with you flying, especially if you’ve had recent imaging.
• Medications: If your blood pressure isn’t well-controlled, your cardiologist may adjust your medications to ensure it remains stable during the flight. A well-controlled blood pressure is essential in reducing the risk of aneurysm expansion or rupture.
• Manage Stress: Anxiety can elevate your blood pressure, so consider speaking to your doctor about medications or techniques (like meditation or breathing exercises) that can help you stay calm.
3. Alternative Travel Options: If the idea of flying remains overwhelming, consider discussing other forms of travel with your family. A road trip may take longer but could ease your anxiety and provide more flexibility in managing your condition.
4. Regular Monitoring: Ensure you have a follow-up plan with your cardiologist. If you haven’t had a recent scan (like a CT or MRI) to assess the aneurysm, you may want to get one before making a decision.

Finally, while you may feel like a “walking time bomb,” remember that many people live with moderate aneurysms for years without complications, especially with proper monitoring and management. Your decision to fly should be guided by your comfort level and the advice of your healthcare team.

I’m a nine year survivor of a complete aortic dissection, so I understand your concern. That said, I spent my entire day today working in the garage and the yard. That’s despite the 13 inch aortic graft inside my chest. I’m a survivor and you will be too. Peace.