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Ep Did Not Mention This In Consult

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merci merci to all...your words of encouragement spurred us on and lit a path when we were overwhelmed...

back on the east coast--after a 10 day visit to the mayo. trying to gather my strength--scheduled to return to EU in a few weeks.

happy to be on the ground for the time being...

mild aortic dilatation: during consult--EP was very reassuring--i was palpably relieved to reconfirm regression of LVH and DD. HOWEVER while reviewing mayo echo summary, at home, we see: OTHER ECHO FINDINGS: mild ascending aortic dilatation 42 mm at midlevel. no mention of dilatation on any of my previous echos. now i am rather apprehensive--my elation is dampened. wondering what this means and why EP did not address this... is there anyone dealing with this sort of issue? mind spinning-- looking at possible causes: predisposition? hyper-mobility but tryp. was in the normal range... my BP was generally low--now more frequent episodes of hypertension. will ask cardio to do another echo in the future. (but in the here and now-- we are a bit anxious)

followup with mayo neuro scheduled for next week. will quiz her on this... as she is my primary... forgot to add--we were unable to have final meeting with neuro before departing rochester. we are going to do review all via skype. was surprised and HAPPY that skype was offered. according to the coordinator relatively few of the doctors will offer "skype visits". initially, we were simply asked to reschedule.

with my best,


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If you search on aorta, you will pull up a series of posts two years ago on a similar topic. I have some eds-type disorder. I was disconcerted as it seemed like my aorta had grown a lot in one year. At the end of the day, people were measuring it at different places, and getting different numbers. I assembled the actual films of my past 3 echos (not just the reports) and got them looked at by a cardiologist who specializes in connective tissue disorders. In my case, he was able to closely compare to see that there really was no change.

It sounds like you should maybe try to do the same. Cardiologists will want to see the actual films, which the facilities should have. They can then look themselves to determine any real change vs mismeasurement. I believe up to 3.7 is considered normal. You probably want to have regular echos to make sure it's stable, preferably with a doctor familiar with hereditary connective tissue disorders. Dr. Francomano is my geneticist, and she has me get echoes at Hopkins in pediatric cardiology (I am 44!). This is where the hctd people are, who know how to be precise in people like us. She had Dr. Hal Dietz do the initial comparison. I am following up annually. Mine is currently on the large side of normal (3.4), but had been measured before (incorrectly) at 2.8, so that I thought it had grown 6mm in one year.

So i would say the first order of business is to determine whether there really is a change.

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dear child at heart...

will start sending off requests on monday for films... great suggestion. have had a fair number of echoes through the years... these should offer a good strong basis for comparison. off to search 'aorta".

thank you... best ~c

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