Courtney812 Posted August 31, 2014 Report Share Posted August 31, 2014 Anyone else with valve problems? I have mild aortic leak and trace on another. Does this mean VEDS? I have attached ear lobe but don't meet anymore facial features. Im only slightly hypermobile in my hands. I just dont know what to do anymore. Scared about the leak... and if I did have EDS could I survive surgery or would my leak just keep recurring.Sigh Quote Link to comment Share on other sites More sharing options...
imapumpkin Posted September 1, 2014 Report Share Posted September 1, 2014 i don't know much about aortic leaks because i had mitral valve leak but don't freak out too much! just because you have a mild leak doesn't mean you will need surgery. (Trust me, worrying about surgery will only make this SO much worse). Please don't worry about possible surgery or even the possibility of needing to survive a surgery. Every surgery has risks of course, but there are some AMAZING doctors and hospitals out there that would provide outstanding care. As far as the leak recurring, I don't know anything about EDS affecting or causing valve leakage but as far as surgery goes I believe it depends on what kind of valve surgery one might potentially have. If the valve is repaired, there is always a small chance of the leak recurring but it is just that...small. and cardiologists would keep a very close watch on it post-surgery. if it is a valve replacement, it could be a bio-prosthetic valve (likely bovine) that needs replacing every 8-10 years, but a mechanical valve would likely be a one-time fix while taking blood-thinners indefinitely.Again, PLEASE don't rush to start worrying about the eventual possibility of heart surgery. There's an excellent chance you will never need it, and if one day you do, you can cross that bridge when you get to it. I am right there with you in terms of going to worst case scenario, I am exactly the same. But having gone through surgery myself, I have to say that one of the absolute worst aspects of it was the waiting and worrying once I was told I needed a repair. I was terrified, couldn't eat, had to force-feed myself, I was loosing weight and essentially wasting away because I was so frightened. I would not wish that experience on anyone so unless or until your doctor says to you "I think you should see a surgeon" please please don't stress about this. Quote Link to comment Share on other sites More sharing options...
neubala Posted September 2, 2014 Report Share Posted September 2, 2014 It is fairly common for people to have trace to mild leakage with one or more vlaves. If it is not causing you symptoms don't worry about. Also the amount of leakage that is reported is sort of subjective depending on the person who reads the echo and the way you feel that day. I see a lot of scho reports are work and the amount of leakage reported can be all over the place depending on the doctor. Quote Link to comment Share on other sites More sharing options...
statesof Posted September 2, 2014 Report Share Posted September 2, 2014 I have this as well, and I've had it long before symptoms. At least in my case doctors have told me it is not really that big of a deal, typically the chance of any complications becasue of it throughout my life are pretty small. Quote Link to comment Share on other sites More sharing options...
Courtney812 Posted September 4, 2014 Author Report Share Posted September 4, 2014 One doctor said moderate but my second opinion (by a top doctor who alsp.works at one of the top hospital for heart surgery said its a mild leak. Quote Link to comment Share on other sites More sharing options...
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