1: In summary, I have two aneurysms; one on the pulmonary artery of 3.9 to 4.4cm, and one on the ascending aorta of 4.1X4.2cm. Add to this mitral regurgitation, overall heart enlargement and chronic chest pain (I'll get to that in question 2).
I contacted my regular cardiologist to ask if I could be tested for Marfan's Syndrome, as I have not yet been, so this has not yet been ruled out. I have done a lot of research and have seen many references here and elsewhere that the presence of Marfan's Syndrome is something that must be determined, due to the additional risk factors it brings into the equation. She basically said she didn't recommend it because it would not change the management of my condition. While I understand that perhaps in the short term, it won't change the medication I'm on (25mg Atenolol X1/day), the sites I've read do indicate that, if it were present it would put me at higher risk of growth, dissection, rupture and sudden cardiac death.
I'm in Northern California. Is there anyone you could refer me to in my area who can check me over for Marfan's, so I can either rule it out, or bring the findings to my cardiologist for treatment considerations?
2: I have also read where my condition can cause chronic chest pain, which I have been dealing with and attempting to tolerate without intervention for the past 3 years. Is there any medication that can, when I have a stronger flare up (such as I have been having these past 2-3 weeks), help me manage the pain, and improve my quality of life?
Any central chest pain or pain radiating to the back that is increasing in severity and frequency should be assessed without haste in patients with known aortic dilation due to the risk of aortic dissection. I would suggest that you report this to your cardiologist asap. If the pain is severe I would recommend that you present to your local emergency department for assessment.
Thank you for your advice - I will take it to heart - so to speak - and have contacted my cardiologist. If needed, if they get tearing sharp, my partner knows to call 911 immediately, and I will not hesitate, as I do wish to survive this and live to my 80's if possible.
I'll contact UCSF, and perhaps bring in copies of all my imaging studies as well for a full evaluation by them.
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