AVR and reason for

[Katlee]

I'd like to know how many people on this forum (young or old) had
to have an AVR because of Marfan's Syndrome or phenotype. I'm sure
some of you had congenital aortic anomalies and that's a totally different
ball game. My son was evaluated by his family Dr. for Marfan's and even
though he fit the profile, he was told he didn't have the syndrome. I have
a connective tissue disease and for years I've not been able to bend down
from the waist without getting what's called pulsatile tinnutis. I have no
idea why I get this and since I don't feel like going from Dr to Dr, I expect
I never will know why. I worry about aneurysms because I've had hyper-
tension for close to 20 years, but I don't smoke, so thats in my favor.

Katlee
ASD,ASA, Rheumatic Fever at
16, PH, a-fib, connective tissue
disease, RA, MVR, TVR

 

[aussigal]

Katlee...if your son is younger than about 15 or thereabouts...he may not have developed enough of the Marfan traits to be diagnosed yet...so it is possible that once he stops growing and changing he may fit the Marfans profile...mind you its not something I would want for him although knowledge is power and it would help if he knows this earlier rather than later if he has it that is.

As for your other question....I had AVR surgery because they were going in to fix/replace my aneurysm anyway and because of the liklihood of "Connective Tissue Disease" figured it was a good time to do my BAV as well. My aortic tissue was sent off to the lab and came back as having been diagnosed with "Cystic Medial Degeneration/Necrosis" ., this is common amongst both Marfan's and BAVers.

I would worry about the possibility of an aneurysm in your case as well and suggest you ask your Cardio if he could check this out with a scan for you. Its probably a good idea to scan the WHOLE aorta not just the ascending aorta, and maybe even the carotoid arteries and brain if you really want to be thorough.

 

[Katlee]

Aneurysm don't know

Aneurysm don't know

Ton,

Thanks for the information; I already had an MRI & MRA of the brain and
carotids, but I've not had a scan of the aorta. I did, however, have a
echocardiiogram.

My son is 29 yo, but I still worry about him, because he was only evalu-
ated by his primary, not a Marfan's expert. He does not like me to
bring it up, because as he put it, thats done and over with. He just got
married two years ago and is having a home built, so I know he doesn't
need any more stress. Every once in a while I'll read that a young man
his age has died as a result of an Aortic rupture. I guess I just worry
too much.

Katlee
ASD,ASA, Rheumatic Fever
at 16, connective tissue disease
RA, a-fib PH