I was "re-diagnosed" in September 2010. My diagnosis went from Marfan's-like symptoms to Loeys Dietz Syndrome. LDS is classified as the "deadly cousin to Marfan's". I went from just monitoring a pesky aneurysm and mild to moderate leaky valve one day to you need surgery sooner rather than later. When I met with my surgeon in September, he told me if it were up to him he would do the surgery "tomorrow". I opted to wait six months and let me tell you, they were the longest six months of my life. Nothing changed, I didn't feel any worse except for the mental h*ll I put myself through. I had anxiety and panic attacks, ER visits, etc. (I do wish I had joined this website months ago, it may have put my mind at ease...) Don't wait, have the surgery and get it out of the way.
I told my family a couple months after my OHS, if they ever come and tell me I have another aneurysm and need surgery again, my response is going to be "do you have time this afternoon?" because I don't want to think about it any longer than absolutely necessary. My mom was relieved to hear this because my initial comment while still recovering in the hospital was if they ever mention OHS again (or surgery on any aneurysm anywhere in my body) was to tell them to get away from me. ;-)
I told my family a couple months after my OHS, if they ever come and tell me I have another aneurysm and need surgery again, my response is going to be "do you have time this afternoon?" because I don't want to think about it any longer than absolutely necessary. My mom was relieved to hear this because my initial comment while still recovering in the hospital was if they ever mention OHS again (or surgery on any aneurysm anywhere in my body) was to tell them to get away from me. ;-)