I have been dealing with frequent, chronic chest pain for the last 3 or so years, which at the time I first began complaining to my health care provider, an echo and ultimately a chest CT was done in 2011. The echo showed the possibility of having an aortic root aneurysm. The CT revealed an ascending aortic aneurysm of 4.2cm, and a pulmonary arterial aneurysm of 3.9cm to 4.4cm. I also have some mitral regurgitation. My cardiologist also noted that in general my heart is enlarged.
I am not an athletic person, nor have ever been.
Here's my question - I have seen references to this, but want some confirmation. Can the ascending aortic aneurysm and pulmonary arterial aneurysm cause frequent nagging chest pain to the center and right of the breastbone - not enough to drop me to my knees, but just a frequent pain, and also a heaviness in my chest. Can it also cause discomfort in the same area when taking a deep breath?
Can it also lead to chronic fatigue? I definitely don't have the level of energy I used to have - it's taken a marked dip in the last couple weeks or so. I just had an echo done in the past 2 weeks, and am scheduled for another in 2 years.
I think the best thing you could do to get specific answers to your questions and to get a good set of recommendations for your condition is to be evaluated at a thoracic aortic surgery center. Such a center has doctors who specialize in treating aneurysms in the chest. I looked at your profile and saw that you are in northern CA, and I know there is a thoracic aortic surgery center at Stanford. In fact, the center at Stanford is reputed to be one of the best anywhere. Dr. Craig Miller there is extremely experienced at repairing thoracic aortic aneurysms. He publishes studies and teaches other doctors. With your aneurysms and with a symptom of chest pain, I would not be comfortable simply waiting two years in a holding pattern. You need expert care, and you need some detailed recommendations. You need both of those things now. You deserve to know exactly how the aneurysms relate to your symptom of chest pain, and I believe only an expert physician who specializes in thoracic aneurysms is likely to be able to evaluate you properly and give you the best advice on that. There are other thoracic aortic centers around the country. They are usually affiliated with medical schools, because it is such a specialized area of practice. Go where you want to, but get specialized care, and that means seeing a doctor who has particular training and experience in treating thoracic aneurysms. Good luck.
Thank you for your reply and suggestions. I have gone around and around in circles with the cardiologist at my HMO, who didn't seem to think the pain could be cardiac related, when all it took was a few minutes search on places like Cleveland Clinic, Cedars-Sinai and others of the same caliber that drew a correlation between chest pain and my condition. I suppose that should not surprise me as I nearly had to twist her arm to get the CT scan, because she kept saying "you're OK". The CT results proved otherwise. I'm not a hypochondriac, but I do know when my body is telling me that something isn't right.
I will try to get a referral from my HMO to Stanford as it sounds like they are top notch when it comes to cardiac care. Thanks again. ~Dave
I should add that the first echo and the CT scan were about a year apart. The echo showed dilation of the aortic root and the mitral regurgitation. I was put on atenolol (25mg daily) and from there the "chase" for the cause of chest pain ensued, ultimately leading to the CT only after the cardiologist told me I was sure to get cancer if they did it. Was good I had the test or I would not know what my exact condition is, and in fact only learned of the aneurysm on the pulmonary artery by obtaining a copy of the CT test results and reading them for myself. The interpreting radiologist said of it that it is "very dilated".
Much of what I know, I have had to research for myself. At least after the last echo, my current cardiologist seems to be more willing to discuss things with me, but I had to point out the CT results to her before that happpened.
I'm so sorry you're having to be your own medical detective, but I definitely think you're on the right track. The Cedars-Sinai and Cleveland Clinic websites are good. You might want to also take a look at the Bicuspid Aortic Foundation's website. Thoracic aneurysms are often associated with bicuspid aortic disease, and so the BAF can help you understand your aneurysms, even if you don't have a BAV. Sometimes people can even get personal feedback from one of the doctors on the BAF's medical advisory board (although I don't think you can count on this).
With a pulmonary artery aneurysm, a thoracic aortic aneurysm, and an enlarged heart, it strains credulity to think that your symptoms of chest pain, fatigue, and reduced stamina are NOT cardiac related. That's just my opinion as a lay person, but I've been through something similar to what you're going through now, and I also had to be my own medical detective. It is from this perspective that I advise people to get expert care for a thoracic aortic aneurysm. I had an unsuccessful surgery at the hands of someone who turned out not to be the expert that he thought he was, and I ended up having to go to an out of state center to have the operation redone. Now I say, get the job done right the first time, hahahah.
Like you, I know when my body is telling me that something is not right, and I think one has to honor that. Good luck, and if you feel so moved as to post with future updates, I will be very interested.
Thanks again for your response. I do appreciate it. It is alright - aside from being unhappy that I have the condition, the voyage of discovery has been interesting in it's own way - albeit alarming at the same time. I think what frustrates me the most was the lack of information provided by my cardiologist and primary care physician.
I certainly will update this in the future as I discover more, or after my next appointment. I'm going to look up the folks at Stanford or UCSF (I work for UCB in IT), and I'll be requesting copies of all the cardiac test results & imaging from my HMO to have for my records, and for updating any out of network doctors as needed.
Well some good news - I asked around at work, and found a different facility still under my HMO, and requested a referral to a cardiologist at said facility. The facility got high marks from the HR dep't where I work, so I thought I'd give my current provider one more try.
Long story short, I got assigned to a new cardiologist and what a difference it's made. They are listening to me, and this one is filling me in on everything, and taking a more active role in my care. I'm scheduled now for yearly MRI's or CT's to keep tabs on the status of my aneurysm, and I've been put on nitrostat to deal with the pain flare-ups from the chronic issue.
While it's still not pleasant news eg nothing has gotten any better, at least they are doing the right thing now, and working with me, treating me far better and respectfully, rather than how it was before. I don't have Marfan's as the testing they did came up negative, so that's also good - so I've got some time before my cardiologist needs to discuss surgical options with me, as I'm at 4.2cm on the ascending aorta/aortic root.
It's good when the doctors you have actually work with you and listen to you, rather than brush you off. In better spirits just knowing they're going to be working with me and keeping an eye on things, not brushing me under the rug.
I hope all is well with you and that you are in good spirits, too, friend.
I'm so glad to hear your news. It makes all the difference when the doctor seems concerned about giving you the medical care you need, as opposed to being more concerned about saving money for the HMO. Feeling trust in your doctor is a good feeling. Thank you for the update. I'm doing well, and thanks for asking, friend. Keep us posted.
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