bicuspid aortic valve

[jimmyb]

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!

[CCF-M.D.-CRC]

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.

[CCB]

what is AGAP mean on lab results?

[debra21784]

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

[Avel]

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.

[JL]

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

[jimmyb]

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!

[Norb.]

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.

[Avel]

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 failing. The good part was that as soon as the old valve was gone, and the new one in place, he improved quickly and did well. Fortunately, there was not any lasting damage to his heart.
Regarding pain in the legs, one might discuss something called claudication with the doctors. It is pain when the leg muscles do not get enough oxygen, possibly due to the blockage of a blood vessel that carries blood to those muscles.
I would really encourage everyone to read the book State of the Heart as the various chapters cover a great deal of very good information.

[farfalla]

Hallo,
First of all thank for set up this forum, really interesting. Second please excuse my bad English, I'm italian.

I'm 36 and I've just been diagnostiqued of Aortic bicuspid valve, of a small mitriatic insufficience, a tiny hole within the two ventricoles and some extrasistoles afther the stress (in the downhill afther the major effort).

I discored that by a chance because my doctor require of an accurate check for an inscurance noticed a 2/6 of hearth murmur.
I'm shocked and scared.
I want to add some details that come to my mind that can maybe help to understand my case better:
I always have had activity a part the last 5 years since I had two babies with a C-section.
I had swallowen ankle after my first C-section.
I had strange feelings in the legs, in deep near the bones during my second pregnancy.
I'm tired.
I has in the past  sensation of faint (never faint completely).
I had got pins and needles at my hands drinking cofee.
I "hear" my hearth sometimes.

I'ma globetrotter. Should I change my style of life? Do I need to take antibiotic for any minor problem? Can I take  high dose of calcium for my breast feeding? Is that recommend breastfeeding (the baby is now over 4 months)? Do you think in future a new technic could be discover avoiding surgery for these defects? Do you know which is the most renomate hearth center in Europe and Italy?

Thanks in advance

[Avel]

I understand how scared you are to receive this news about your heart. However, today more than ever before there are very good solutions for those born with things such as bicuspid valves. It is good that this was discovered in you now, so that you can search for the very best medical care for yourself. I am not sure of the best source of help for you in Italy or Europe, but I would recommend that you seek out the major university medical centers, because they will always do the most research and have the most recent knowledge. It is always wise to get more than one opinion. One example that I found is that there were two papers published quite recently from the University of Rome regarding the aorta - the root and the valve. Regarding your question about anitbiotics - one must be very careful of infection of the heart valves. Regarding calcium, my husband was told not to take additional calcium - but I do not know what would be advised for a nursing mother.
My husband's experience is listed on a support group for those with aortic disease at www.westga.edu/~wmaples/velebir_arlys.html
and if you would like to email me, you can do so from that site.
Best wishes to you.

[paige girl]

my daughter was diagnosed with a bicuspid aortic valve at the age of 10 months,she has two of the sleaves stuck closed,so far she is an active healthy & bright girl,though recently started to complain about chest pain (she's now 3yrs) her gp dismissed this as "probably just an arrythmia " also she suffers terribly with painfull legs.This can be 3 or 4 times a week & she needs heat packs ,massage & paracetamol to ease the pain ,this is offten soo bad she cant walk very well,on occasion she has got up in the morning limping ,her gp says this is just growing pains? she also has pain if we put her on our sholders or sit her in a super market trolley .Could you advise me if this may have any thing to do with her condition?
thanks paige girl.

[Avel]

Hi Paige Girl,
The safest thing for your little girl is to have her fully evaluated by someone with specialized expertise in heart disease in infants and children. Since you know that she was born with a bicuspid valve, it is important to find out whether or not there are additional issues.
The book "State of the Heart" by Larry Stephenson, MD, has  chapter 7 on heart problems of infants and children. This book is online at www.sts.org/doc/6393  It can also be found in bookstores and purchased online. The whole chapter is very helpful; note on page 103 where it discusses what is called coarctation of the aorta. Because of the narrowing of the aorta, blood does not reach the lower part of the body (legs) very well. I think it would be only reasonable to discuss this kind of thing with the doctors, given your daughter's symptoms with her legs. At the very least, you will want the reassurance that everything possible has been considered and ruled out. In this same book, Chapter 10 is about heart valves. I hope this information will be helpful to you.
With best wishes to you and your precious little girl.

[neilheart]

I had an aortic valve replacement with a mechanical St. Jude valve in 1993 and have had no difficulty at all since.

[Ryan 31]

I have been diagnosed as having a biscuspid valve and my ascending aorta is at 5.0.  I'm told that 3.5 is the upper limit of normal and that I should have surgery.  I 44 and have no symptoms other that a slight soreness in my chest.  Another doctor has told me I should monitor it and check again in six months, and if it reaches 5.5, I should consider surgery.  I'd like some advice please.

[Avel]

Dear Ryan,
Reading your situation brings memories of when my husband was diagnosed, and you have my very best wishes as you deal with this. Surgery should be done when the risk of the surgery is less than the risk of the aneurysm rupturing or dissecting. This decision is reached by the surgeon and the patient together. It is of the utmost importance that you are dealing with a highly skilled surgeon who specializes in this surgery.  The risk factors that are being considered should be explained to you clearly in making this decision. I would be very interested to hear the thinking behind waiting until it reaches 5.5 cm. The risk of rupture of an aneurysm increases with its size, so why is it being suggested that you wait while the risk of rupture increases? Were you told that you have any other medical conditions that add risk to the surgery for you? You also should be able to have access to the surgical statistics of the surgeon you are considering, which will indicate to you both the number of surgeries done and the quality of the results.
My husband's aneurysm was about 5.1 cm as measured by echo when it was found. (Measurement from the actual surgery was 5.0 cm). We understood clearly why he should have the surgery and did not hesitate to do so as soon as his blood pressure was lowered. It was definitely the right decision in his case. In the last 10 years or so, the risk of this surgery has declined when it is done by those most expert in it. It appears that around 5.0 cm is often the point at which surgery occurs for those so fortunate to find expert surgical care. Also, waiting 6 months for the next measurement is not something I would be comfortable with.
There is an aneurysm support site where I have written my husband's experience at www.westga.edu/~wmaples/velebir_arlys.html  I can be reached via email from there and would be glad to go into more specifics with you. Very best wishes in obtaining the very best care from the very best medical expertise possible. Arlys