"Watchful Waiting" Update

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Active member
Oct 14, 2009

Been awhile since I posted and thought I'd share the info I received in January.

To recap: I had a EBT CT scan of my heart at Swedish Hospital in Sept '09. I do this every few years just to watch for heart disease and because they do walk-ins for $200. Good news: no plaque to speak of. Bad news: ascending aorta dilated to 4.6 cm. Good news: pulled the one I did in 2006 and said "oh it was 4.6cm then, too." Too bad they didn't catch it THEN, but oh well.

Had another CT at my local hospital, confirmed the diagnosis. Rest of the aorta is fine. Decided I wasn't too happy with the answers I was getting locally so I looked around for real experts and picked Dr. Liang at Stanford and Dr. Miller as the surgeon if that became necessary. That's where we pick up the story.

In January I went down to Stanford and met the team in the Connective Tissue/Cardiac section. They are extremely nice, all of them! Dr. Liang is very informed. They did an Echo the right way and finally I got confirmation that I do indeed have a BAV. The image showed up beautifully, the tech really did a good job. Could see the fused leaflets and everything. I'm asymptomatic for that and the regurg is minor, so Dr. Liang said that Dr. Miller is an excellent choice as he's the master at the valve-sparing surgery. He doesn't believe I'll need a valve replacement. No sign of Marfan's or a connective tissue disorder.

The ascending aorta was confirmed at 4.7cm (although the CT is probably a bit more accurate). He told me that the mortality rate at 4.7 is less than the mortality rate for surgery (although both are significantly under 1%), and said that he didn't recommend surgery right now, but if I insisted, he would. I agree with him as surgery will put me out of commission for awhile and I work offshore. I am starting with a new company next month that has short and long term disability so if/when I do need surgery I will be (mostly) covered financially, which is a relief.

So basically, we're at "watchful waiting". He said that the fact that it's been the same size since 2006 (and maybe years before that, 2006 was my first chest CT) is a good sign. He doesn't like the accumulated radiation from regular CT's, so we're going to be doing their fancy 4-d MRI annually. He believes it will eventually start to grow and I will eventually need surgery, and for the Stanford team, that number seems to be 5.0. In the meantime, I'm not supposed to lift anything that causes me to "strain", and I keep my BP nice and low with an atenolol in the morning and a lisinopril at night with no side effects. This is working very well; I just had my offshore physical and running on the treadmill, my systolic BP stayed under 140 even though my heart rate was at 160 for the stress test. The chest and back discomfort I occasionally have was explored and he believes it's not aneurysmal pain as it can be affected by movement or diet, and it doesn't correspond to when my BP is higher (ie, during exercise).

Also, apparently the root is fine and most of the arch is OK so the inominate artery won't be affected during surgery, which means that I don't have to be on bypass or frozen for as long.

Anyway, that's me. How're you?

Equusz, RN, EMT-P
Kudos to you for seeing Liang and Miller. Miller is a Zen Master in valve surgery who I discovered mostly by accident and was smart enough to contact.

My situation was different. My valve needed replacement right away. My aorta was not terribly enlarged, but it was a WYAIT (While You Are In There) procedure that Dr. Miller strongly advocates rather than separate surgery. So, watch and wait until there is an indication for surgery, which may never happen. Your aorta appears stable and your valve is not a problem. Mine BAV was unknown to me until I was 61 but by then it had stenosed down quiet a bit and continued to shrink rather quickly over the next year. All better now thanks to Dr. Miller.
I remember you and wondered what had happened! You had the same experience with Dr. Liang that I did. He was the first one to actually see my bicuspid aortic valve and showed me the picture on a laptop. Your aorta size is about what mine was also. However, in 2008 I slipped into some level of heart failure (and could only walk about 10 feet without stopping to rest) so I set up my surgery. The surgery went well, etc. My current problem is that my joints (especially my right hip) are going bad and I need to have it replaced soon. I am a lot older than you are, however. Thanks for checking in!
Bill - thanks for the reply. Always glad to hear more success stories with the docs I've picked.

Maryka - sorry to hear about your hip! I hope your replacement goes smoothly when it happens. Can I ask, how many years elapsed between the discover of your BAV and aneurysm and the heart failure in '08? And how big was your aneurysm when you had it replaced?


I'd be a few hours away from the O.R., sure. But I'm cleared for offshore work by more than one doc...the risk is considered low enough, for now.
Your questions: Almost 20 years from the discovery of the aneurysm to surgery. I went on large doses of beta blockers and cut out aerobic activites and never lifteed over 25 pounds, and had frequent chest CT scans. The aneurysm stayed stable at 4.6 to 4.7 . (You will see different numbers I have posted on these threads. In truth, there was some variation but never higher than 4.7.) Dr. Liang discovered there was a bicuspid aortic valve in late 2002 and from then on, that was watched quite frequently. In the end (late 2008), I could barely walk from the parking garage into my desk without stopping every 10 feet. Luckily, my work was very sedentary.
Wow, twenty years! I wonder if mine will stay at 4.7 for that long. Somehow I doubt it.

I have this nagging feeling that even though we know it hasn't moved for at least 3 years, somehow knowing about it will make it start expanding. I so hypersensitive now to every sensation in my chest. Kinda sucks. Oh well. Still glad I found it.