My enlarged aortic root, and my pectus excavatum.

Hello, I'm not sure if this question has been asked before, but please read this. This would actually fall in two categories, but this seemed to be the most fitting.

My name is Ryan, and I'm a pretty healthy kid. I lead the "straight edge" lifestyle, which means I don't participate in smoking, drinking, drugs, premiscuous sex. I'm slowly working my diet into cutting out meat, and eventually intend on a purely ovo-lacto vegetarian diet. I'm a bit of a workaholic (when it comes to an actual job), as well.

I was born with what's known as a pectus excavatum, where my pectus looks sunken-in. It's between a mild and a moderate case, but it has bothered me immensely since I hit puberty. I stay away from activities involving with taking off my shirt (swimming, going to the beach, intimate moments with a girl...), and I honestly haven't gone without a shirt in public in years. Even then, I find myself looking down at my shirt to make sure my "crater" isn't visible through the folds. About a year ago, I was told that I could be given a surgery to undo the "crater". My mother and I attempted to set up the surgery, but it's been pushed off for at least half a year. This is keeping me from finding a new job (the last place where I worked was closed, and I won't find a new one if I'd just have to quit it for a month) and starting college. At this point, I'm becoming extremely frustrated with the lack of contact I've recieved from the surgeon.

The reason why the surgeon (who shall remain nameless) has presumably been hesitant, is because of another condition I have in my heart. My aortic root is enlarged (if I recall correctly, it's 40 milimeters), and I also have a bicuspid aortic valve. Scheduled trips to my cardiologist have confirmed that it hasn't grown significantly in over a year or two, though, and my cardiologist has told the surgeon he approves of the surgery. The biggest worry is that I would have to undergo heart surgery during the time when the rod(s) of the surgery are in place, which could possibly obstruct the path to my heart. However, my cardiologist has told me that the chances of my heart requiring surgery in the near future are minimal.

My questions are:

Is my surgeon right to be so hesitant? Is there that much of a risk? He's said himself that he's performed the same surgery on patients with Marphan's Syndrome, which he says isn't very unlike my own heart condition (when it comes to that surgery).

What are the risks of the potential heart surgery I may later have to undergo? Will I survive?

[upchurch131]

I'm not a surgeon.  But I do have a bicuspid aortic valve and an enlarged aortic root.  I am now 53, however, this condition was discovered in my 40's and monitored since then.  There is always a chance of surgery for your heart condition.  My cardiologist told me the day my condition was discovered that immediate attention was not necessary, but if I lived long enough (joke), I would require a valve replacement.  Some conditions required intervention sooner, some later.  Mine went for nine years before we started talking about corrective surgery.  He didn't say anything about an aortic repair until last month when my root measured 5.1 c.m. so that was a surprise.  The theory behind waiting was that the longer I lasted (under monitoring), the better procedures and technology would become.

I'd say you have to anticipate surgery sometime in your lifetime to correct this condition- so it would be wise to anticipate this now.

Stu

[Momto3]

Hi Ryan and welcome!!

You have a great question and have provided lots of important facts.  While I can't answer your specific questions, I was thinking you might also want to try and post to one of the doctors on the forums.  There are links to the right (related expert forums) that you can use to try and post.  The doctors accept a limited number of questions/day, but it's definitely worth a try.  I'd suggest the Heart Disease or the Interventional Cardio forum.

In the meantime, leave your post here also.  As you can see, you will get responses here too : )

Good luck with everything!!

[Jack54]

Ryan, I am very sorry to hear about your conditions. I have looked up some information for you. I know that you have probably done this already, and want to hear from people who have gone through the surgery.

If you go to the "Doctor's Forum", I think you can do a search on your two heart problems and find a lot of information from previous posts.

I would listen to my cardiologist first in your quest to have the corrective surgery on your chest. The Cleveland Clinic has a very famous surgeon known world wide for aortic valve and root repair. Your chance for survival is very, very high for all of the surgery you might need to have on your heart. That is for sure. Go to the Cleveland Clinic's website to find survival rates for Bicuspid Aortic Valve and Enlarged Aortic Root repair.

You will be fine as long as you have a very good cardiologist and surgeon.

Best of luck and health to you :)

Jack

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Aortic Valve Regurgitation - Cause (one of several causes)
Enlarged aorta (dilation of the aortic root). The portion of the aorta that is connected to the heart is called the aortic root. If it becomes enlarged (aortic root dilation), it can lead to regurgitation by pulling the leaflets of the valve apart and out of shape, causing them to leak. Aortic root dilation can be caused by age, high blood pressure, a disorder of the body's connective tissues (Marfan's syndrome), syphilis, and autoimmune diseases, in which your immune system begins to attack your own body's cells

Complications of an Enlarged Aortic Root:
Aortic dissection. In aortic dissection, blood can leak into a tear in the inner lining of the aorta, causing the walls of the aorta to separate. When a separation occurs, blood can seep into the middle layer of the aorta and damage the vessel and the structure of the aortic valve.
http://www.webmd.com/heart-disease/tc/aortic-valve-regurgitation-cause

Bicuspid Aortic Valve
Although patients with BAV may go undetected or without clinical consequences for a lifetime, the vast majority will require some intervention, most often surgery. The important clinical consequences of BAV disease are valvular stenosis, regurgitation, infective endocarditis, and aortic complications such as dilation and dissection.
http://circ.ahajournals.org/cgi/content/full/106/8/900

Patients with bicuspid aortic valve are at increased risk for infective endocarditis. Prophylactic antibiotics are required for dental or surgical procedures as recommended by the American Heart Association. A single dose of antibiotic is generally administered approximately 1 hour before an invasive procedure (ie, one that has the potential to produce bacteremia). Follow-up doses are not usually required. For more information, see Antibiotic Prophylactic Regimens for Endocarditis.
http://www.emedicine.com/ped/topic2486.htm