aortic aneurysm:seeking insight and information

[dewolfe]

greetings all:

any insight or advice would be appreciated.

is anyone dealing with dysautonomia + thoracic aortic aneurysm?

please forgive the long lead in....after a bout of (an unidentified) infection, i was bedridden for two years. subsequently developed some sort of dysautonomia.  currently dealing with  orthostatic hypotension, random hypertension, alternating bradycardia/ tachycardia; heat intolerance, exercise intolerance...  am walking now (albeit slowly) and i am sublimely grateful.  three years ago, in the course of reviewing my medical records, i noted a change in my mid ascending aorta--enlarged from 3.3 to 4.2 in a seven year period.  i gathered the records and talked to my EP.  his response: "oh, ****".  FYI this man is a well respected (overly scheduled EP) at a major teaching hospital in boston. i was angry and dismayed--how was this missed? moving onward...  in light of the dysautonomia, i am unable to tolerate beta blockers or any sort of vaso-dialators.  my heart rate randomly dips to 38--45 PBM...averaging 52-60 BPM when resting/supine. my blood pressure is extremely labile.

i suspected a collagen defect:  insisted my mother be tested -- discovered she also has an aortic aneurysm.  (she is 71. i am a 51 yo female)  MRAs are done yearly--the growth has slowed.  i am a poor candidate for surgery--in light of the dysautonomia.  i want to be tested for vascular EDS.  i suspect a collagen defect.  we are fortunate to have decent insurance coverage.  what else should we be looking at/for?  am trying to schedule at cleveland clinic for a consult.  

thank you so much to all.

with kind regards,

~d

[majorcarter]

Dr. Elefteriades (Yale) has developed an RNA test for Thoracic Aortic Aneurysm.  Some detailed information on aneurysms and the RNA signature test here:  http://content.onlinejacc.org/article.aspx?articleid=1140497

[skydnsr]

I think going to Cleveland Clinic is a good idea.  Tell them you want to be tested for EDS as part of the work-up.  There is a familial aortic aneurysm syndrome apart from EDS, though, that is sometimes referred to as familial TAAD (Thoracic Aortic Aneurysm and Dissection) syndrome.  There's not a genetic test for TAAD, as far as I know.  It is just something that is observed in families.  You should also have your aortic valve looked at, although I'm sure you won't need to tell them that.  Good luck, and let us know what you find out.