francie12
Well-known member
Hi, everyone! Even though I don't post myself too often, I check in almost every day and almost always learn something new. You may not know me too well, but in the last year I've come to know all of you regulars and I think of you as treasured friends! You've been with me through diagnosis, the dumping of first cardio, interview with surgeon, etc, etc. I'm out here rooting for all of you, and newcomers too.
I wanted to share our latest news, good, after Matt's appointment with the peds. geneticist/connective tissue clinic. No evidence of Marfan's or similar disorders
! Our local pediatrician had had suspicions and referred us, I researched thoroughly, of course, then waited...weeks...for the appointment. Whew!
The genetics dr. gained my confidence by being well up on bicuspid valves and associated tissue concerns. She said there were different types of thoracic aortic aneurysm syndromes and that bicuspid valves were implicated in at least one--maybe more than one, I didn't get that quite clear. Her take on bicuspid valves--a bicuspid valve with a dilated aorta may possibly mean weaker, more easily dissecting aortic tissue, but not necessarily. Even when found dilated at a younger age it can hold steady over the long term (guarded, double-whew!). Only continued, careful followup will eventually reveal what boat you are in. How Matt's aorta handles his upcoming adolescent growth spurt will be telling!
She also said that a echocardiogram cannot image enough of Matt's aorta to determine how far the dilated section extends--it just goes off into space. So he'll need an MRA of the whole aorta to measure it. Does anyone know why this is the case?
For those interested in echos to screen family members of a bicuspid valve, the position of this dr. is to determine if the dilation (of either the aorta or the LVDD) is indeed progressing and if so, screen all first degree relatives. Hopefully, she'd be able to finagle things to get the insurance to pay!
Thanks again for being there, everybody. You're the best!
Jane and Matt
I wanted to share our latest news, good, after Matt's appointment with the peds. geneticist/connective tissue clinic. No evidence of Marfan's or similar disorders
! Our local pediatrician had had suspicions and referred us, I researched thoroughly, of course, then waited...weeks...for the appointment. Whew! The genetics dr. gained my confidence by being well up on bicuspid valves and associated tissue concerns. She said there were different types of thoracic aortic aneurysm syndromes and that bicuspid valves were implicated in at least one--maybe more than one, I didn't get that quite clear. Her take on bicuspid valves--a bicuspid valve with a dilated aorta may possibly mean weaker, more easily dissecting aortic tissue, but not necessarily. Even when found dilated at a younger age it can hold steady over the long term (guarded, double-whew!). Only continued, careful followup will eventually reveal what boat you are in. How Matt's aorta handles his upcoming adolescent growth spurt will be telling!
She also said that a echocardiogram cannot image enough of Matt's aorta to determine how far the dilated section extends--it just goes off into space. So he'll need an MRA of the whole aorta to measure it. Does anyone know why this is the case?
For those interested in echos to screen family members of a bicuspid valve, the position of this dr. is to determine if the dilation (of either the aorta or the LVDD) is indeed progressing and if so, screen all first degree relatives. Hopefully, she'd be able to finagle things to get the insurance to pay!
Thanks again for being there, everybody. You're the best!
Jane and Matt
