Thanks for the comments. Your information is helpful.
Most doctors have suspected that I may have some type of connective tissue disorder.
Currently, are there any genetic tests that will determine if I have a connective tissue disorder or not?
The surgeon that I have been talking to is from Swedish Hospital in Washington state. Swedish is regarded as the top cardiac care center in Washington. University of Washington is also highly recommended.
Agree with nickppatel's comments. I had surgery in '04 for a similar sized aortic aneurysm and have had 3 MRA's since then with no problems. I do what I want in terms of exercise and activities, I take 5 mg of Bystolic and 150 mg Avapro with zero effects on my activity level. If your surgeon and cardio say have the surgery, I'd listen to them. Not sure who you have for a surgeron, I strongly suggest you go to someone who has done hundreds of these, not someone who does one now and then. I suggest Cleveland Clinic, or my surgeon Dr. Vincent Gaudiani (Sequoia CA), or Dr. Craig Miller at Stanford. Good luck.
I just want to add that the fact that Marfan has been "ruled out" doesn't tell us much. If you have even a handful of MFS signs, you still may lie on the connective tissue disease spectrum. For example, I know people who don't officially meet the MFS criteria and thus, for them, MFS is "ruled out," but for all intents and purposes they have some Marfan-like CT disease that can still have the same end result as untreated MFS. 5.6cm is not normal for anyone.
We do but because you are seeking an opinion of an expert I would suggest going to one here at the main campus. You could also consider going to Mayo clinic or Texas heart. I specialize in the rhythm of the heart and so having me look at those images wouldn't be of much use. I suggest calling the cleveland clinic and requesting an online consult with a cardiac imagin specialist. They would have full access to your records and would certainly be more helpful in deciding whether surgery is needed at this point.
Thanks for responding. I have a copy of all of the CT images. If you like, I could send you the disk or just host the images online if you prefer.
I have heard a lot of good things about the Cleveland Clinic that is why I posted my question here. Unfortunately, I live near Seattle. Do you have clinics outside of the Ohio area?
The risk of surgery in someone your age is very small, with a complication risk of about 1-2%. Your aortic root is dilated by conventional measurements. When it reached 5.5 cm surgery would be recommended because of the risk of dissection or rupture. A normal aortic root measurement is about 2.6 cm/m2 (BSA), 4 cm is considered aneurysmal. Because you are 6'5'' I would have to look at the actual images of the aortic root to assess for any signs of pathology before I could definitely say that there is or isn't pathologic dilation So I would recommend getting a second opinion. We specialize in aortic valve and aortic root disease here at the Cleveland Clinic and would be glad to see you at any time.