Re: Husband's Aortic valve stenosis is getting worse, should I get a second opinion?

Subject: Re: Husband's Aortic valve stenosis is getting worse, should I get a second opinion?

Forum: The Heart Forum


My husband is 34 years old.  He found out several years ago that he had a congenital heart defect.  The aortic valve only had two valves because the third was fused to one of the other valves.  The doctor told us that it was nothing to get concerned about and that he would more than likely have to have it replaced in his 60's.  He went in for a check-up with the specialist two years ago.  They told us that the valve opening was down to 1.7 cm.  They then told us there was still nothing to worry about and to come back in two years.  We went again in Feb.  The valve opening is now down to .9 cm.  They said that he was now considered high risk... but not to worry about it and to come back in a year.  I know that they don't want to replace the valve until it is absolutely necessary.  If he is considered high risk, why are they not wanting him back sooner than a year? My husband is always tired and getting sick about once a month. I have looked up the symptoms to watch for when the valve is getting smaller.  I have even informed some of our friends he works with to watch for the left sided heart failure.  I have also read that some people don't have any major symptoms before the valve completely fails.  We have been trying to locate information of the actual procedure that would take place, and would like to know if we should get a second opinion since the specialist that we have gone to doesn't seem to concerned?  See, we have three small children and when you put that into the picture, it makes me worry all the more.





Dear Michalle,
The aortic valve is the valve that separates the left ventricle from the aorta.  It is made of 3 leaflets or flaps that look like an peace symbol when the valve is closed.  A bicuspid aortic valve means that there are 2 leaflets instead of the usual 3.  A unicuspid valve means there is only one leaflet.   Bicuspid aortic valve is the most common congenital anomaly of the heart.  These valves are functional at birth and remain so throughout a normal life span.  There is a increased predisposition to progress to stenosis (narrowing) as an older adult (60-70's) and surgical repair may be required at that time.  Replacement is not generally required until the valve has an area of less than 1 cm2.  In your husband's case they are trying to wait as long as possible before replacing the valve.  If he were to develop any symptoms then it would be time to replace the valve.  It is a good idea to wait as long as possible because valves have a limited lifespan.  Has he had any symptoms?
Here are some questions from previous patients:

Q: Are there any physical restrictions for individuals with bicuspid aortic valve?
A: No.  
Q: Is there any reason to believe that exercise can cause or exacerbated the leakage already in the valve or the dilation of the ventricle?
A: No.  Exercise does not precipitate deteriotion of valves.  
Q: Are there any special diet restrictions?
A: No.
Q: Are there some people who have had bicuspid aortic valve who will never have to have a valve replacement or will everyone with this problem eventually have to get their valve replaced?
A: Only a small percentage of people with this condition will eventually need surgery.
Q: What type of replacement valve is best should surgery be required?
A: The choices are a bioprosthetic valve (from an animal), a mechanical valve, or a homograft (from a human cadaver).  Each has benefits and risks.  The benefit of the bioprosthetic and homograft are that anticoagulation with a blood thinner is not required.  This may be useful in women of child-bearing age who desire to become pregnant and older persons with a high risk of falling.  The disadvantage of these valves is that their life-span is only about 10 years.  The advantage of the mechanical valve is that the life-span is much longer (usually longer than the patients) but requires taking an anticoagulant.  
It is a highly individualized choice as to which valve and will depend upon the patient's preference, the practice of the hospital where the surgery takes place and the co-existing medical problems.  The final decision as to which valve to use will be made by the surgeon in the OR once the valve is exposed and clearly seen.
Q: Is repair of the valve an option, rather than replacement?
A: Aortic valve repair is not a mainstream surgery but is being done at some centers. Essentially what this surgery involves is a detachment of the valve from the aorta and reattachment to a graft.  The benefit of the operation is the preservation of the native aortic valve. This type of operation is not commonly done but may be a good option  depending on the particulars of the case.   In any case it would be wise to have the operation at a major medical center with experience with the operation. The following article has additional information about valve repair and can be obtained at your local medical library.
Pepper J.  Yacoub M. Valve conserving operation for aortic regurgitation.  Journal of Cardiac Surgery.  12(2 Suppl):151-6, 1997 Mar-Apr.

Q: How do I find out if I would be a candidate for the minimally invasive techniques that are being used now?
A: You would first need to be evaluated by a cardiologist who would make recommendations to you and the surgeon.  The final choice would be up to the surgeon doing the operation. If you would like to be seen here I would recommend Dr. Cosgrove or Dr. Lytle (http://www.ccf.org/heartcenter/staff/thoracic.htm).  Surgical appointments can be made through the surgery scheduling office at [phone].

More information about congenital valve abnormalities can be found in  the web sites below.
http://www.amhrt.org/Heart_and_Stroke_A_Z_Guide/conghd.html
http://155.37.5.42/eAtlas/CV/579b.htm
http://www.mamc.amedd.army.mil/WILLIAMS/CHEST/Cardiac/Congenital/Bicuspid/Bicuspid.htm
http://www.cachnet.org/messages2/3292.html
http://www.mch.com/pihc5-06.htm
Hope this helps.
I hope you find this information useful.  Information provided in the heart forum is for general purposes only.  Only your physician can provide specific diagnoses and therapies.  Please feel free to write back with additional questions.
If you would like to make an appointment at the Cleveland Clinic Heart Center, please call 1-800-CCF-CARE or inquire online by using the Heart Center website at www.ccf.org/heartcenter.  The Heart Center website contains a directory of the cardiology staff that can be used to select the physician best suited to address your cardiac problem.










Follow Ups:


Husband's Aortic valve stenosis is getting worse, should I get a second opinion? Michalle 4/12/1999
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Re: Husband's Aortic valve stenosis is getting worse, should I get a second opinion? CCF CARDIO MD - CRC 4/14/1999
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Husband's Aortic valve stenosis is getting worse, should I get a second opinion? Ted Cottrell 4/22/1999
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Re: Husband's Aortic valve stenosis is getting worse, should I get a second opinion? CCF CARDIO MD - CRC 4/23/1999
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Husband's Aortic valve stenosis is getting worse, should I get a second opinion? CCF CARDIO MD -CRC 4/23/1999
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Re: Husband's Aortic valve stenosis is getting worse, should I get a second opinion? Ted Cottrell 4/24/1999
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Husband's Aortic valve stenosis is getting worse, should I get a second opinion? CCF CARDIO MD - CRC 4/26/1999
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Husband's Aortic valve stenosis is getting worse, should I get a second opinion? Michalle 4/12/1999
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