marmalade,
Thanks for the interesting question. And wow, what a history!
I recently reviewed that very article and noted the recommendation. The aorta specialists at the CCF are reviewing our experience to define a protocol, but most of us would recommend an approach somewhat between that chosen for Marfan's and patient's with other causes for aortic root dilation.
Currently, at CCF, patients with Marfan's and aortic root dilation undergo aortic root replacement once the aorta reaches about 4.5 cm. Patients with hypertension, for example, and aortic root dilation undergo aortic root replacement once the aorta reaches 5.5 cm.
A strategy being used by many of us is to recommend aortic root surgery at greater than 5 cm for patients with bicuspid aortic valve, especially if some other reason to operate exists, such as significant aortic regurgitation. If a patient comes to one of us with an aortic root of 4.5-5cm and a BAV, then we will obtain an MRI and echo, and schedule follow-up in 6 months for repeat studies. If the aortic root size is increasing, then often we will recommend surgery.
These recommendations obviously vary from patient to patient depending on the comorbid medical conditions and particulars of the patient. Also, this is the approach taken here at CCF with our particular patient population and surgeons -- it may not be the best one for other centers.
Good luck!
Dear Marmalade,
As you are experiencing, the factors influencing the timing of aortic aneurysm surgery are complex. I read the literature from the major researchers regarding this when my husband was diagnosed. In the text, "Diseases of the Aorta" I read a statistic that 20% of diagnosed thoracic aortic aneurysms still rupture, which is certainly a concern. The general statement is that surgery is done when the risk of surgery is less than the risk from the aneurysm, but defining that point is still not simple. The good news is that the risks of this surgery at an expert center are much lower now, making it safer to do the surgery sooner than in the past.
I am happy to see the AHA has published regarding this - I just did a search of their online journals and the article you referred to did not come up. Do you have the name of the journal?
You may be interested in the aneurysm support group at www.westga.edu/~wmaples/aneurysm.html My husband's bicuspid valve and aneurysm experience is listed there, dated November 30,2001.
There are additional medical references that I could share with you, and information regarding research being done on the genetic component of bicuspid valves and aortic disease. I can be reached through the aneurysm website or at ***@****
Best wishes to you.