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Heart Disease  (Expert Forum)
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bicuspid aortic valve
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MedHelp Member's Question

bicuspid aortic valve

by jimmyb, Mar 16, 2002 12:00AM
This site is awesome! However, I'm really getting mixed signals about bicuspid aortic valves. I have been diagnosed, and my ultrasound is fine. One doctor on this site says bicuspid valves need to be replaced by the time most patients are in their mid 50's. Another doctor says very few need to be replaced at all, and usually only in the mid 60's or 70's. Which is it? BTW, I also suffer pvc's which I guess sometimes go along with bicuspid valves. They really got bad for a few months, usually when I would lie down in bed, and sometimes I couldn't get to sleep for hours. I started taking magnesium and potassium supplements and haven't had a problem all week. I hope it's not just a coincidence, but it's nice to get some rest! Anyway, I would really appreciate one of the cardiologists clearing up the valve replacement dilemma. Thanks!
Doctor's Answer

by CCF-M.D.-CRC, Mar 17, 2002 12:00AM
Dear jimmyb,

I think the confusion depends on the presence of stenosis (narrowing) or not.  If stenosis is present then most bicuspid aortic valves (2 leaflets instead of three) do end up needing replaced, usually when the patient is middle aged (also depending on how your define middle-age).  If you do not suffer from stenosis your valve may never need replaced. On the other one of the more common reasons for stenosis is bicuspid valves.



I guess the bottom line is to have your valve monitored on a regular intervals (about once every 1-5 years depending on what your doctor recommends)  As long as there is no stenosis you are OK to wait on any surgery.



I don't know of a connection between PVCs and bicuspid valves but if the supplements are helping then I would keep taking them.  Be sure to have your potassium and magnesium levels checked by a doctor.
Member Comments (15)

by CCB, Mar 16, 2002 12:00AM
what is AGAP mean on lab results?

by debra21784, Mar 16, 2002 12:00AM
To: jimmy
Valves usually get repaired or replaced when there is regurgitation (they don't close completely or stenosis(they are narrowed causing increased back pressures).An Echo and TEE can tell you if this is a surgical problem and if so help with timing of the surgery

by Avel, Mar 17, 2002 12:00AM
To: jimmyb
There is a book "State of the Heart" by Larry W. Stephenson, MD, that you might find helpful. Chapter 10 is about heart valves, and bicuspid aortic valves are covered. This book is available through bookstores, and the STS, which is the professional organization for thoracic surgeons, has made it freely available on the web at www.sts.org/doc/6393  What is written there corresponds to my husband's experience with his bicuspid aortic valve. The book mentions that it typically does not cause a problem in childhood, but that over time calcium deposits can form, narrowing the valve opening (stenosis), and that symptoms often develop between the age of 30 and 60 years. My husband was about 49 when his severely calcified valve was replaced.

There is one other thing that those with bicuspid aortic valves should know. There is a risk of aortic aneurysm associated with bicuspid aortic valves. (An aneurysm is the ballooning out of the wall of the blood vessel, and can be life threatening if it should tear or burst.) This is documented in the medical literature. One paper you might discuss with your doctors was written by John Burks, MD,et al., and published in Clinical Cardiology in 1998. This paper recommends that the aorta of bicuspid valve patients also be monitored for enlargement. We did not know this until last year when, 11 years after the valve was replaced, my husband was discovered to have an ascending aortic aneurysm. It was fortunately found in time, he underwent surgery successfully, and is doing very well. Being under the care of a major research/medical center has the benefit of their expertise not just with the aortic valve, but the aorta itself. The good news is there is help and hope, but it is important to be monitored. I have documented my husband's experience at www.westga.edu/~wmaples/velebir_arlys.html and it is also possible to reach me via email at that site. I hope this may be helpful.

by JL, Mar 18, 2002 12:00AM
To: jimmyB
First hand account which may provide you some additional comfort/insite:



Discovered I had bicuspid aortic valve in mid 1988 at around age of 24, very depressing news and very scary at the same time.  Was put on yearly review cycle with cardiologist, moved to Atlanta and got new cardio.  Checked every year: December 1998, Cardio told me very matter of factly that it was time to get valve replaced.  Remember the blood draining out of my face as I thought about the severity of open heart.



Anyway, had a Ross procedure done (two valve surgery), usually done for younger patients, out at the LDS hospital in Salt Lake City with Dr. Don Doty.  Incredible hospital and doctor (aren't they all when you come through surgery fine, haha).



So, 3+ years post surgery at current age of 37 and all is well.  Only thing I should mention is an incredible awareness of my body since surgery, almost too much in the sense that I notice every little thing that doesn't seem "right".



Hope that helped, we can chat in person if you'd like more thoughts and first hand experiences.



John

by jimmyb, Mar 18, 2002 12:00AM
Just a follow up... I'm 45 years old, had an ultrasound recently which the doctor said was great... in fact he really had to check when I told him I had a bicuspid valve. I have no symptoms, and work out six days a week. My doctor is obviously aware of the situation and seems completely unconcerned. Is there anything I should be concerned about or look for? Just want to cover all the bases!

by Norb., Mar 19, 2002 12:00AM
I am 57, not overweight and generally fit except for heart problems. They are a bicuspid aortic valve, a servere leak in my mitral valve, now some enlarging of my heart, etc. I have been doing ok on meds for over 25 years. including atrial fib. concerns.

Now it seems things are getting worse(via the latest echo) and just how I feel most of the time..tired, chest discomfort, etc. Now I have extreme leg pain. I have an excellent cardliologist and if Ai need surgury it would be at Froedret Lutheran Hospital/medical college of Milwaukee.

Any ideas about the leg problems? Related to heart problems??

Had Neuological tests-all ok.

I know there are no guarentes but, any odds that I will feel better if I have surgury?? Any suggestions? I will be having a follow up echo in a few weeks.

Thanks for any help.

by Avel, Mar 24, 2002 12:00AM
Symptoms like feeling "light headed" or being short of breath due to aortic stenosis are described in the book "State of the Heart" that I mentioned. However, it is important for the valve (and the aorta!) to be monitored because not everyone may have these classic symptoms. My husband always exercised, practiced good nutrition, etc., was in good health altho' he had a "heart murmur", with no symptoms. He suddenly came down with pneumonia - apparently as his heart was getting "tired" a small amount of fluid had gathered in his lungs and was a friendly environment for some very nasty bacteria to grow - altho' he did not have the shortness of breath symptoms one might have expected prior to getting the pneumonia. After the infection was cleared, it was apparent that he was in full congestive heart failure -- short of breath, very weak -- and the valve needed to be replaced. This is definitely not the ideal way to go into surgery, weakened and with the heart