pondering about ....

[bethanne]

I was curious how many bi-cuspid aortic valves are out there visiting this sight who have not had replacement surgery. How many of you are out there?

Do any of you know anyone who has a bi-cuspid aortic valve that went their entire life without needing surgery?

7 years ago when I was originally diagnosed the cardio who was present during my TEE said I would probably need surger in 5 - 10 years. During the past 4 years with the cardio I see now, he has never projected surgery.
The past 6 weeks have been very difficult (although I have felt better the last 3-4 days). My 6 month appt is next wednesday. So while I am waiting, I find myself wondering about what the statistics are for having or not having replacement surgery.

I feel very fortunate to have found this site in advance I have learned so much.

Thanks for your feedback,
bethanne

 

[bethanne]

I just read my post and I realized how much it resembles a roller coaster ride. This is exactly how I am feeling right now. And I do not like roller coasters. LOL!!

oops! my control issues are showing again.

bethanne

 

[Ross]

Issues? You have issues? Give it a little more time, someone will rumble through and post.

 

[chevrolet]

I am in that situation ... a bicuspid w/o replacement, and new to this site. I have many of the same questions as you. My doc told me that I have nothing to worry about ... that the ejection fraction is fine, I only have "trace" or "mild" stenosis, heart is not enlarged etc. But reading some of the posts on this site makes me wonder and I'm thankful for the extra information I'm learning here, like how important it is to listen to changes in your body rather than what the tests say.

As to your question about people who have lived their whole lives w/o replacement, I don't know. A grandfather of mine did have a terrible murmer. I don't know if it was due to a bicuspid valve, but he died in his 70's of cancer.

My echo had to be redone three times before they found the bicuspid ... one echo actually said there were no abnormalities, and another tech almost let me leave the table with a clean bill of health until I told her what the doctors were evaluating me for. This leads me to believe that it's an easy diagnosis to miss and there are people out there who may not know they have it.

Hope this helps.

 

[epstns]

Hi, gang!

I'm another with a bicuspid aortic valve (and moderate aortic stenosis) who is still pre-surgery. I'm 56 years old and a rather active fitness nut. I still run 5K, 5 days a week, at 9 min. miles -- not going to win any races, but good enough to feel that I'm in better shape than lots of guys 20 years younger (modest grin. . . ).

I was diagnosed with aortic stenosis about 18 months ago when a doctor performing a routine physical asked "How long have you had that murmur?" One thing lead to another and now I have a cardiologist and do echo's and office consult every 6 months. We are still rating my stenosis as "moderate" due to the fact that I'm pretty much asymptomatic, etc. As the cardio puts it, ". . . Surgery is very likely, but not for several years -- maybe 5 or so." Who knows? That's the same thing they said a year and a half ago. From what I've heard, that's what they will probably say right up until they figure out that surgery should be ASAP (chuckle). They don't know in a scientific sense. They can only go by symptoms, echo measurements, other observations. The timing is as much art as science, I think.

If you can get the symptoms under control, a good cardio can show you which measurements are the key ones in your case. Then you may get a better idea of timing. I doubt that a PCP will be technically astute enough to do this for you, so get thee to a cardiologist, quick (as they say).

 

[Raverlaw]

Bethanne,

There is no hard and fast answer. My bicuspid aortic valve was diagnosed through an angiogram in 1963 when I was 8. They told my parents that I would likely get some enlargement of the heart and that I shouldn't engage in strenuous activity. Otherwise I led a very normal life.

Last November, at the age of 49, I found out quite by accident that the stenosis had become severe and that the valve would need to be replaced. My AVR was last week, and the surgeon said the valve was in worse condition than either the November stress echo or December angiogram had indicated. He said, after seeing the valve, that it is very unlikely I would have survived past 50 without a replacement.

I wonder if people like Steve, who have been more active because they didn't know they had a valve problem, actually get their valves to last longer? It wouldn't surprise me at all. I started feeling much worse and SOB after the cardio restricted my activity while awaiting surgery.

 

[bethanne]

thanks bill and steve.

Wow Bill the news of your valve being worse than the echo showed certainly validated to your concerns. It's a shame we have to go through OH surgery to feel validated. I just noticed I said we like I had open heart surgery, I guess that is that kinship thing I feel meeting other bi-cuspid valvers.

I am including a quote from Karlynn from another posting:

Just about everyone on this site has had some experience with a doctor that doesn't know "jack" about what he's supposed to be treating us for, but tries to make you think he does. We've all come to realize that we must be our own best health advocates and vigorously seek out qualified medical help. Doctors aren't God and one is not just as good as the next. If your car kept having trouble, you probably wouldn't take it back to the mechanic that told you nothing was wrong.

It is definately affirming to talk to others here that are having the same experiences. I do feel that I have a good cardiologist, I just haven't been vocal enough about my symptoms to give him cause to look deeper than the numbers on my previous echos. I do feel that my pcp does not have the experience with my valve issues to rely soley on her counsel. I do think if I bring to her the information I have learned she will consider it and re-evaluate her recommendations. But I will probably find another physician for my primary care. Someone on this site posted the question about having an specialist of internal medicine as their primary care physician. I would like to learn more about that.

I am definately going to be more assertive at my appointment on wednesday.

Bill I am curious what your numers were prior to surgery... systolic and diastolic measurements as well as EF. Escpecially since your surgeon reported the valves in worse condition than reported by the echo.

thanks,
beth

 

[Rush20]

Bill, you raise an interesting point. I went from diagnosis to surgery within 3 weeks. Although I was born with a bicuspid aortic valve, my cardio and surgeons believe a dental procedure in November 2002 caused bacteria to attack and eventually begin to destroy my valve. The regurgitation wasn't so much a failure of one of the leaflets closing, rather actual holes in the valve leaflets causing the blood to flow back.

Regarding physical condition, I had played in a men's softball tournament the weekend before my diagnosis. I played 10 games in two days in 90 degree heat. My surgeon couldn't believe it and told me I was very, very, very lucky I didn't fall over or suffer a catostophic (I love that term ) event.

Last week I bumped into my old neighbor who runs marathons. After telling him what I went through, he told me a similar story of a friend of his who is also a marathon runner who was diagnosed and had to have surgery within 8 weeks. His doctor told him that because he was in such good cardio shape, his heart did not over-react to the stress of the failing valve. If he had been less active, he probably would have experienced chest pain and/or shortness of breath. Funny how the body works.....

 

[bethanne]

makes a lot of sense....

I wonder what Arnold Schwat.zenneger (sp?)... would say! Didn't he have a valve replacement a few years back? When I had my knee surgery 7 yrs ago the nurses were discussing the topic when they heard I had a bi-cuspid aortic valve as they wheeled me into surgery...

 

[Rush20]

Yes, now Governor Arnold Schwarzenegger (sp?) had a failing aortic valve. He originally underwent the Ross procedure, however the next day during recovery he experienced severe shortness of breath. They had to perform a second operation.

According to my cardio, as a result of the second surgery, Arnold had to have a mechanical valve inserted to replace the replanted aortic valve. I guess his publicists kept this hush-hush as they didn't want the image of the Terminator on coumadin. This could also have played a role in Arnold moving out of action movies and into politics. Again, all speculation, however my cardio did confirm he now has an artificial valve.

If anyone asks him about his valve his canned response is "Old News, nothing to talk about". Sort of encouraging in a way considering his new career.