marfan syndrome

I have been told that I have marfan syndrome or atleast a variant of marfan syndrome.  Currently I take atenolol, cozaar, novasc and hctz.  It has been suggested that I have a sympomatic aorta, which simple means that if my aorta gets under stress then it literally hurts.  When I do household chores or are under stress then my heart area hearts.  I am beginning to wonder if blood pressure would creep up to a level that makes an aorta uncomfortable, especially when one's aorta is already dialted.  I thought that the norvasc would keep things under control and keep the aorta pain free.  One year ago my mital had a mild leak and now it leaks moderate.  Is there anyway to tell if this will rpogress or is it different in all cases?  My aortic is a mild leak with two jets.  What does that mean? Thank you Doctor for helping eveyone one the site learn.

[CCF-M.D.-MJM]

Hi Marzeis,

Good questions.  Marfans syndrome varies greatly from patient to patient.  If i were you I would get a second opinion from a place that you know specifically treats Marfans syndrome.  Drs. Thamalarison and Garcia take care of a lot of Marfans syndrome at the clinic.  I referral center would at least help reassure you (and me) that you are being treated appropriately.

An exercise stress test will answer the question of whether your blood pressure increases with exertion.

Is there anyway to tell if this will rpogress or is it different in all cases?

Progression of disease varies from patient to patient.  There is no way to know for sure.

My aortic is a mild leak with two jets. What does that mean?

It means on echo two distinct jets of regurgitation are seen.  This information gives cardiologists and surgeons an idea of what the mechanism of leak is -- this is not something you should worry about.

I hope this answer your question.  Good luck.

[marzeis]

Doctor,

I wanted to also ask your opinion as to why on my echo reports it always states that there is a aorta pseudoanyursym possible, but then when I have my mri of the aorta, it never mentions it.  Is this possible?  
Thank you.

[CCF-M.D.-MJM]

the echo reader is saying that the images suggest a pseudoaneurysm.  The MRI was likely ordered to follow up this question.  The MRI is a better test to so it is not.  If the MRI is read as negative, it is very likely correct.