Marfan Syndrome

[Louisa63]

I am a 44yr old female who was in hospital for an unrelated injury where the hospital found some irregular heart beat and sent me for an echo cardiogram.  My doctor referred me to a Cardiologist and 14 months later I have been diagnosed with Marfan's Syndrome.  I have a mitral valve problem.  The valve doesn't close all the way properly.  They are sending me for a scan of the aorta.  Is the scan a CT type scan?  Also what are the percentages of Marfan's having heart issues needing surgery.

[risnerrose]

My 15 year old son is being monitored for Marfan's.  Three years ago he researced his sunken chest and voiced his concerns.  We scheduled an appointment with the gp for "his peace of mind".  One thing led to another, and he has seen a pediatric cardiologist ever since.  He does have mitral valve prolapse (a minor Marfan's symptom), but the cardio is monitoring for changes that could occur in the aorta. We have recently taken our 10 year old in for chest pains, and I have wondered about our 18 year old daughter.    

What other symptoms do you have? (Just looking for more answers.)

[banglamom]

A CT scan is a great way to get a radiologic look at soft tissue.  I don't know the percentage of Marfan's patients who need surgical repair, but it is enough that having the diagnosis means better watch that aorta.  In Marfans, things get TOO big.  Lots of things... i.e. are not too problematic, they actually just help to be diagnostic.  A bug thinned out aorta causes not symptoms.  That is the problem.  You don't see it, it doesn't bother you... UNTIL.. well, just the aorta followed regularly.  If the aorta dissects from a bulge out the edge, getting it dealt with before is the key to survival.  Good chance, if it was not known until now, it may not be altogether fulminant.  Being followed is NOT life changing.  Get it looked at before a problem, just as a fact finding mission... then address some of the what ifs when you have to cross that bridge.  That is one of my best pieces of advice for the journey through any complicated med problems... one step at a time.

[Jerry_NJ]

I'm not familiar with "Marfan" but will give some input on the mitral valve.  This response will also help trigger other inputs, is believe.

A leaky mitral valve is a condition that is not normally treated, in my experience, unless there are related problems, such as an enlargement of the associated atrial chamber.  I suffered from a leaky mitral valve for a number of years, but in my case it did (assumption) contribute to my developing Atrial Fibrillation, and over a period of a number of additional years after the appearance of AFib, caused the enlargement of my left atrial chamber to a point that required surgery to correct.  As it turns out my problem was the mitral leaflets were not able to close the full opening, and the surgeon inserted a ring to reduce the size.  Thus I ended up with a retaining ring implant making it possible for my leaflets to close the opening.  I'm not suggestion you need surgery, that can be determined with an echocardiogram and other diagnostic tools.

I do not have any experience to share on a CT type scan, but again mention the echocardiogram, you may want to ask your doctor...he/she must have used something to diagnose the mitral valve problem - just an educated ear?  Hum, is a CT scan a catheter look?  If yes, I have some experience there too.