Ascending aorta diameter and Ehlers Danlos Syndrome

[jane102252]

I am a 58-year-old female, height 5'11", weight around 145-150.  I have the hypermobile form of Ehlers Danlos syndrome.  For the last several years I have had an annual echocardiogram, ordered by my primary care physician, because my ascending aorta is slightly dilated.  It measures 3.42 cm, and the "normal" range is given as 2.1 - 3.4 cm.  I've never seen a cardiologist (although I believe a cardiologist from our local medical center, a teaching hospital, reads the results of the echocardiogram every year.  My aortic root measures as "normal" at 3.06 cm.

Over the past five years there has been no change in the diameter of my ascending aorta, and my primary physician is not concerned.  I believe, however, that I'm the only EDS patient he's ever had, and he is therefore not particularly knowledgeable about EDS (particularly since I look healthy and my "medical" test results are all good; e.g. cholesterol, blood pressure, bloodwork).  

Should I be concerned, see a cardiologist with some EDS experience, etc.?  I see from reading online that 3.42 cm is not considered particularly worrisome.

Thanks in advance for your advice.

[jane102252]

Thanks very much for your reply.  I like my primary care physician, and find his experience on the whole very reassuring.  I've been his patient since 1988.  For years I myself never thought much about my Ehlers Danlos since I was able to work and lead a normal life just treating the symptoms--which weren't so bad, honestly, until I hit my 50's.  Even now, I have trouble with the EDS boards sometimes because folks are very focused on their illness and in particular, many are so affected that they've chosen to go on disability very early.  That scares me in the sense that, well, if I had done that, it would have felt like giving up control of my life.  As it was I worked until age 57 and have savings, pension, health insurance, and other benefits of a long career.  I do NOT think that makes me in any way "better," but perhaps luckier that I'm either not so affected by the condition, or just determined to keep it marginalized as a factor in my life.

I think as long as it does not progress (the aortic diameter) I will just watch and wait.  If it does, I'll ask my doctor for a referral to a cardiologist who has some experience with EDS.  I would stand to lose the benefit of his knowing me from the time I was 34 if I switched (I'm 58 now).  That's no small thing.

Thanks again for reminding me what a small deviation that is,

Jane

[curmudgen]

What level of reassurance are you looking for?  3.42 is .02 cm above "normal".  That's not much is the world of biological variability.
I agree with you that someone other than your PCP reads the echo.  Mine certainly does.  I sense some insecurity on your part with respect to your doctor's knowledge of EDS and being his only patient with it.  Several options - assume he knows enough to ask for medical opinions in the future and remain with him, or switch to another doctor with more experience with EDS,  or just ask your doctor if he feels in anyway concerned about the level of treatment he can give you.  Sometimes the direct approach turns out to be the best.