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