Some little piece of information I found on the net which could be reassuring.

[themalteser]

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TUESDAY, Sept. 13 (HealthDay News) -- Many people born with a heart defect known as bicuspid aortic valve live in fear of sudden death, but a new study finds only a small risk for a life-threatening complication called aortic dissection.

However, these people are at high risk of a different complication -- an aortic aneurysm, or bulge in the wall of the aorta, researchers report.

Bicuspid aortic valve, the most common congenital heart defect, occurs when the heart's aortic valve has only two flaps that open and close rather than the normal three. The aorta, the large blood vessel that carries blood away from the heart, sometimes tears, or dissects, as a result of this defect.

"Aortic complications are real in bicuspid aortic valve disease," said lead researcher Dr. Hector I. Michelena, an assistant professor of medicine at the Mayo Clinic in Rochester, Minn.

"The risk of dissection is higher than the general population but remains low," he said. "But both risks of aneurysm and surgery for aneurysm are significantly increased. Despite this, the 25-year survival is not affected in the bicuspid aortic valve disease patient."

This should reassure these patients, Michelena said.

For the study, published in the Sept. 14 issue of the Journal of the American Medical Association, the researchers examined the medical records of 416 patients diagnosed with bicuspid aortic valve between 1980 and 1999 and looked for complications due to the condition.

Over an average of 16 years' follow-up, two patients had an aortic dissection, putting the risk at 0.5 percent. Although that risk is 8.4 times higher than for people without bicuspid aortic valve, the absolute risk is very low, Michelena's group found.

Forty-nine patients in the study developed aneurysms. That puts the risk of developing this problem at 26 percent for these patients, and that's 86 percent higher than the risk for people who do not have bicuspid aortic valve, the researchers said.

Also, after an aneurysm was found, the risk of aortic surgery over the next 15 years was 46 percent, and the risk of aortic dissection was 7 percent. Over 25 years, the risk of having an operation connected to bicuspid aortic valve was 25 percent, they said.

Those at the highest risk for an aortic dissection were patients over 50 and those with aortic aneurysms, Michelena's group noted. The 25-year risk for needing a valve replacement -- the most common complication -- was 53 percent, they added.

Dr. Gregg Fonarow, a professor of cardiology at the University of California, Los Angeles, said that between 1 percent and 2 percent of the population have bicuspid aortic valves. Many patients have no problems, but some develop blockage or leakage of the valve and some have abnormalities of the aorta that may result in aortic dissection. The frequency of this complication has not been well-studied, Fonarow said.

This study indicates that the absolute risk for this problem is very low, at three per 10,000 patient years of follow-up, he said.

"These findings are reassuring and suggest that the rate of aortic dissection among individuals with bicuspid aortic valves, while significantly higher than the general population, are still quite low in absolute terms," Fonarow said.

More information

For more information on bicuspid aortic valves, visit the U.S. National Library of Medicine.

 

[ottagal]

Good info and thanks for sharing. It put's statistics we read 'in perspective'.

 

[AmyBL]

Themalteser,

This is very good news. Thank you for posting.

Amy

 

[Richard Gardner]

Does anybody know what the risk is of having another aneurysm if you had one and had the valve and upper aorta replaced? I did Ironman triathlons prior to diagnoses of leaky bicusbid aortic valve and enlargement of my aorta (5.3 cm.) I had both replaced two years ago. One cardiologist I met with is concerned that if I exercise too much, what's left of my original aorta could start to enlarge.

 

[sarahsunshine]

Richard - I don't know any exact numbers, Skyler's cardiologist said that since his valves and his ascending aorta have been replaced, the only thing that needs following is the aortic arch for aneurism... So it seems, at least, that our surgeon and your cardiologist are on the same page. I woudn't personally worry about exercise being the cause (I have seen that exercise does not seem to be related, but can't reference anything). I would, however, keep being monitored in case it is a problem, just for peace of mind. At least they know what to monitor.

 

[Greg a]

Than ks for sharing that Malteser !!!!

 

[ElectLive]

Does anybody know what the risk is of having another aneurysm if you had one and had the valve and upper aorta replaced? I did Ironman triathlons prior to diagnoses of leaky bicusbid aortic valve and enlargement of my aorta (5.3 cm.) I had both replaced two years ago. One cardiologist I met with is concerned that if I exercise too much, what's left of my original aorta could start to enlarge.

Cleveland Clinic did a study of patients who had ascending aortic aneurysms repaired, and at 10 years, there was a 2% risk of needing another surgery due to additional aneurysm formation. Exercise recommendations following aneurysm repair are often inconsistent, primarily due to the fact that there is no real clinical data to evaluate. Generally speaking, few, if any, restrictions are enforced after repair so long as it's moderate exercise and there is no "active" (presence of dilation or growth) aorta disease elsewhere.

However, the connective tissue disorder that leads to aneurysm formation in bicuspid patients is never cured, so in theory, your cardiologist is right that the unrepaired aorta could still enlarge. It's not really a matter of exercising "too much"...it more has to do with certain types and levels of exercise that put your aorta more at risk. Extreme weightlifting is one activity that significantly increases arterial pressure, so a more "reasonable" approach of lighter weights more repetitively is often recommended, which is theoretically "safer" - but again, not clinically proven to better prevent future surgeries.

Normal aerobic exercise is obviously encouraged for overall heart health. But, vigorous aerobic exercise (heart rate over 160 or so) could potentially induce a hypertensive response, so if that's the specific concern your doctor has relative to your triathlons, I wonder if a stress test could be performed to evaluate you more thoroughly rather than just practicing avoidance. Oftentimes, anyone who has had a repair is maintained on a beta blocker long term anyway, no matter what the normal exercise levels are, so that of course impacts post-surgery max heart rate levels.

In any case, back to the "active" disease comment, if you are monitored over time, simply resuming pre-surgery exercise levels, no matter what they are, isn't completely crazy either, since there should be time to adjust (scale back) if dilation starts appearing. There are certainly cardiologists out there who would endorse this strategy. But obviously, it would feel better to have your own cardiologist's blessing!

 

[Richard Gardner]

Thank you,
I appreciate the thoughtful informative responses.
Richard

 

[DavesMom]

Hi Richard,

I had my BAV replaced and an aneurysm repaired back in 1999.

About four years ago I read on this wonderful forum about the possibility of more aneurysms developing because of the BAV. I mentioned this to my cardio and suggested a CT. She agreed and guess what? Lo and behold there was an ascending aortic aneurysm measuring 4.4 cm. I also have aneurysms in the arch, the braciocephalic artery and the origins of the left common carotid and left subclavian arteries.

Heck, last year's CT even showed a very small aneurysm in the artery going to the spleen! What's up with that? : )

Luckily there hasn't been much change in mine yet but have to admit even 4.4 cm. makes me nervous since I'm very tiny. So yes, it is possible to have an aneurysm repaired and then develop more.

My cardio has cautioned me against lifting more than 20 pounds and also not getting my heart rate up too high with aerobic activity.

Thanks for the info and best wishes.