Update.. and advice?

[pgammo]

Hello again friends,

I have officially completed my testing. I have done multiple blood tests, multiple EKG's, stress test, holter monitor, Echo, CT scan with IV contrast, and just did my TEE exam yesterday. My blood pressure is perfect, heart rate is perfect, oxygen levels are perfect, and the doctor says that my heart is extremely healthy - no aneurysm, no swelling or enlarging, and no narrowing. I do, however, have a bicuspid aortic valve with moderate regurgitation. My cardiologist believes that the leak started within the last couple of years and has been getting worse fast, but this is just his theory, as I have never had a murmur or any other type of abnormality.

He recommends surgery ASAP. He says that because my heart is in great condition, he wants me to have my surgery sooner rather than later so that I don't acquire long term heart damage, and so that the surgery is pretty straightforward with little to no complications.

I'm currently finishing my last semester in college and should be done by the end of May, but my wife will be delivering our third baby around July 15. Should I hold off on the surgery until I become symptomatic? Or should I shoot for an end of May surgery so that I can be about 6-7 weeks recovered when my wife delivers? I am 25 years old.


Also, my Cardiologist recommended a metal valve? Does anyone know anything about those? And do any of you know of any good surgeons in San Diego, CA?


Thanks so much everyone! I feel like I'm finally at peace and have accepted this. It has been a difficult couple of weeks, but through family support and prayer, I feel confident and at ease with the surgery and hope to have a quick and amazing recovery.

 

[ElectLive]

Well, I know an ASAP surgery recommendation is never going to be considered good news, but you've clearly had a comprehensive evaluation, so good to hear at least that everything else is in tip top shape - which does put you in great position for success. Have you met with any surgeons yet, or just the cardiologist? Surgeons are in the business of evaluating risk, and when the risk of surgery is less than the risk of waiting, that's usually when they say to have it done. By all means, push back and ask more questions of your cardiologist, as well as any surgeon you meet with, though, if you feel you need to, particularly given some of the scheduling issues you have. My wife was in her third trimester with our second child when I was advised to have surgery. The surgeon was willing to wait until after my child was born, and did not really try very hard to talk me into it, but he made me aware of the risk of each approach (surgery now versus surgery later) and why he recommended that I not wait.

I chose to go ahead, my surgery and recovery went extremely well, and 8 weeks later, I was back in the hospital watching my wife deliver a baby girl. Now, in a perfect world, I never would have imagined having heart surgery at that time in my life of course, but I needed it, I did it, and experienced nothing but good outcomes all around. You should feel confident that the same will be true for you.

A mechanical valve is certainly the most common recommendation for someone your age, but not the only option either, so I recommend you do some research (you can find a lot of info here) to make sure you are fully comfortable with the decision, as well as discuss fully with your surgeon. There are broad category options (mechanical and tissue), sub-category options (different brands/designs or different types of tissue), as well as procedure options (repair vs replacement) at times. Unfortunately, there are pros and cons for each, and it takes a bit of effort to try and get a handle on it all.

But it's a major life decision, so as much time as you are able to devote to learn more, I think you will be glad that you did. Your cardiologist is giving you the "textbook" recommendation: mechanical valves are chosen at your age to avoid the additional surgeries that tissue valves would require, and in most cases, they do. Mechanical valves do require lifetime anticoagulation management which involves interaction awareness of diet and medicines, periodic blood testing, and a daily anticoagulant (Coumadin) with periodic dosage adjustments. That was a grossly oversimplified version, but there's much more information on the site here, as well as many folks who will be glad to answer any questions you might have as well as reassure you how normal your life can/will still be with a mechanical valve. I had a "Plan B" for my surgery that would have involved a mechanical valve instead of tissue, and I would have been very comfortable with that option as well.

Anyway, you have a great attitude, and that definitely makes a difference too. While I'm sure you could have probably thought of a lot better times in life for this to happen to you too, don't let that deter you. I can assure you from personal experience that it is definitely very possible to continue to be confident and at ease as you head into surgery, as well as to have a quick and amazing recovery - even amongst other major life events including soon to arrive babies and young children. If you don't believe me, you can read a much longer version of my story here: http://www.valvereplacement.org/forums/showthread.php?38916-The-Best-Year-of-my-Life. Best wishes to you and look forward to hearing good news from you moving forward.

 

[Fundy]

Why is it that moderate aortic regurgitation without symptoms is so much worse than moderate aortic stenosis with no symptoms. I'd almost think that moderate is a misnomer as a classification if it is in fact worse.

I couldn't see myself consenting to surgery with moderate aortic stenosis with no symptoms and no clinical damage to heart yet. It's not uncommon to get a decade or two out of the valve in that state. A few members here have got more than a decade from moderately severe stenosis.

I don't know much about aortic regurgitation, but If the ' moderate ' classification is similar in nature, I couldn't see a reason to replace a valve that may last twenty years that isn't causing any trouble yet. Unless of course it is getting worse fast, and then an echo in 6 months would confirm this.

I'd be asking more questions, such as how long might you expect your valve to last before damage and symptoms might occur. Personally, I think I would wait a year and another echo unless symptoms began. Unless of course moderate regurgitation is way more severe then moderate stenosis is.

 

[Eva]

..............I couldn't see myself consenting to surgery with moderate aortic
I'd be asking more questions, such as how long might you expect your valve to last before damage and symptoms might occur. Personally, I think I would wait a year and another echo unless symptoms began.

Valve replacement surgery technology has been advancing quickly in the last few years. Why expose one's self to the *risks of any surgery* and its possible complications and to start taking warfarin/coumadin *ASAP* when your valve may last for several more years...when you may take advantage of the advanced technologies in the near future! I am not saying Warfarin or surgery are bad...I simply do not understand your cardiologist reasoning of the urgency of having the surgery *ASAP* other than that your heart muscle is in good shape!

To answer Fundy: None of my cardiologists recommended surgery when my aortic insufficiency was moderate, heart strong, no symptoms!

Surgeons normally base their decision of the surgery on the symptoms one has, which you do not seem to be bothered by any if I understood your post well.

My advice:

- Definitely seek other cardiologists'/surgeons recommendatiions.
- Ask for a CD copy of your echocardiogram imaging and results to take with you if you do not wish to repeat the echo, and
- Ask the questions Fundy recommended above.

Good luck with your decision.

 

[ElectLive]

Why is it that moderate aortic regurgitation without symptoms is so much worse than moderate aortic stenosis with no symptoms. I'd almost think that moderate is a misnomer as a classification if it is in fact worse.

I don't believe it really is, moderate is moderate for both. Another oddity is the clinical evaluation that has already been done...a stress test, CT, and TEE are not normally indicated for asymptomatic moderate regurgitation. Perhaps the echo was too inconclusive, or perhaps there is some other factor in play, but again odd that the cardiologist wouldn't have mentioned it more directly, since everything else supposedly checked out fine. Surgery is indicated in asymptomatic patients under certain circumstances, but generally only in the presence of severe factors (LV dysfunction / dilatation). So anyway, all the more reason then, pgammo, to push back and ask more questions and solicit other evaluations.

 

[pgammo]

Wow, if I could wait a a decade before having surgery, that would be incredible. I think i will seek a second opinion then..

So, moderate regurgitation of a bicuspid aortic valve with an overall healthy heart can remain moderate for many years?

 

[ElectLive]

So, moderate regurgitation of a bicuspid aortic valve with an overall healthy heart can remain moderate for many years?

It's different for everyone, so no one ever really knows for sure, but theoretically yes. I guess I'd rather put it like this, though:

If you'd joined us here by only saying that you had moderate regurgitation, most everyone would probably be guessing years. If you'd joined us here by only saying what tests you've had done and what your cardiologist had said, most everyone would probably be guessing months. As it so happens, you've told us both, so the mystery is where in between you might really be. Even more interesting, cardiologists are usually the ones who try to postpone surgery as long as possible, surgeons on the other hand usually recommend it a little earlier. Those are stereotypes of course, and doctors are individuals in the end.

Anyway, please keep us posted as you learn more...it will be interesting to learn where things go from here.

 

[Mentu]

Reading over your posts, I would suggest that you ask your cardiologist very specifically why he recommends surgery now if this is unclear to you. My experience with my cardio is that by the time he suggested surgery it was definitely needed. I don't think such a recommendation to you would have been made casually. Although delaying surgery is by and large desirable, this must be balanced by the damage the heart suffers slowly over time as the valve degrades. One of the most common problems is thickening of the left ventricle walls caused as the heart attempts to compensate for the constricting valve. The heart tissue thickens and becomes stiffer leading to diastolic dysfunction which may continue years after surgery. It is my own experience that to a great extent it is this slow damage to the heart that determines the quality and completeness of one's recovery. Getting a second opinion from another cardiologist or from a cardiac surgeon is an excellent way to help validate the initial recommendation and clarify your options.

Larry

 

[Rebecca]

I would get a SECOND OPINION for having surgery with moderate aortic regurgitation. Seventeen years ago I started with moderate regurgitation and enlarged heart. About seven years ago I had moderate to severe aortic regurgitation. Last year I started having symptoms and finally had my aortic valve replace in October. Get copies of all your records and get another opinion from a different cardiologist or maybe send them to the Cleveland Clinic. Also visit your family doctor with a list of questions of why you need surgery with moderate aortic regurgitation. Surgery is good if you need it but do not have surgery until it is time. Eleven years ago I had a cardiologist that sent me to a surgeon because I was having lots of symptoms and I went to other cardiologist for a second opinion and he put me on meds for high blood pressure and my symptoms went always.

 

[MS2]

I am in a very similar situation as you, and will say that there is a lot of great advice being given in here.

I am 27, and was diagnosed at 25. My doctor told me I had a murmur which I never knew about. After an echo and MRA it was confirmed I had a bicuspid aortic valve. It was classified as mild-moderate 2 years ago, and then last year for my annual echo, it was classified as moderate-severe. So it had progressed quite quickly. My cardiologist recommended I start researching surgeons, just in case I need to have this surgery sooner than later. I flew to Cleveland Ohio and went to the Cleveland Clinic. They told me that it is moderate-severe, but they would like to have me hold off as long as I can so that I do not have to undergo surgery, have to start coumadin, etc. (as long as I had no symptoms). So I stand in a very similar situation as yourself. I am going back to Cleveland Clinic in June to get re-evaluated and see if it has progressed at all. Right now it is just wait, and be prepared to do surgery when it is called upon.

Definitely do your research, get a 2nd or 3rd opinion. I would consult a surgeon and interview them (find out who you are comfortable with, find out what their success rates are for aortic valve replacements, find out the infection rates, etc.) and have an idea of what you would do if you needed surgery ASAP. Then, if you become symptomatic, you have a plan in place.

Technology and medications are advancing quickly in cardiology. So, if you can manage to hold off the surgery for a few years, it may be to your benefit. Just something to think about.

I am going to send you a PM with my email so you can contact me if you have any questions or want to shoot any idea/questions by me.

 

[Eva]

... They told me that it is moderate-severe, but they would like to have me hold off as long as I can so that I do not have to undergo surgery, have to start coumadin, etc. (as long as I had no symptoms). So I stand in a very similar situation as yourself.

As long as one has no symptoms, I of course agree with CC's advice. My surgery became necessary a bit over seven years after my echo revealed moderate to severe aortic regurgitation and mild to moderate mitral regurgitation.

Good luck, guys.

 

[scott.eitman]

As a husband and a heart patient, I say discuss this with your Cardio and your wife. I would probably try to hold off as long as possible...because the baby's birth date is not set in stone yet. Not to say not this year, but maybe after the birth. But again, with the Cardio's blessing.

 

[DanielB]

pgammo, sorry I missed this string and am just now jumping in. I received your PM about Dr. Adamson nad will reply to that, but wanted to add to this string first so others would have the chance of seeing it for thier benefit. First, about the surgeon, Dr. Adamson. simply put, I was impressed by him from the time my wife and I sat with him and I sat with him andd grilled him for over an hour and a half about everything from the details ofmy situation, to why he got into heart surgery. I trusted him with my surgery and my life once and would not hesitate to do it again.

Now, about your questions above. I too was diagnosed with an aortic valve problem for the first time May of 2010, with moderate to severe aoritic reguritation with some enlargement of my aorta. I was told 4-6 years was the best estimate for suregery. I did not nhave a bicuspid valve, though my cardio told me he was surprised I didn't -- most likely a congenital probelm for me. I had six month follow-up echos and all showed that I was stable, except that, in January 2011, I started getting symtoms -- lightheaded and some shortness of breath when doing minor lifting and carring of things, etc. My cardio told me we could work on managing the symtoms and see where it took me or replace the valve now. I chose to do it then, allowing me to schedule it for the fall when it would be best for my recovery schedule. Well, by the time came for suregery, I felt a lot worse and was thankful I had chosen to it then and not wait to start the preparation process.

I agree with others that it sounds a bit odd that they want to move to surgery with only moderate reguritation, but I agree too that a lot of tests were ordered for some reason. In my case, I asked for the TEE, wasn't given a stress test at all and did not get the CT scan until I had made the decison to have the surgery done as part of the pre-op work my surgeon and medical group do. They must be seeing or strongly suspecting something to want to move you to surgery now. I agree with others that if you're unsure about this, to ask your cardio and your surgeon for clarification. I know it helped me a lot going into surgery (and since) knowing I was doing all this because it was the best thing for me at that time.

 

[tobagotwo]

I applaud your cardiologist's notion of doing the surgery before your heart becomes a train wreck. Most cardios are so surgery-shy that they have a tendency to make patients wait too long.

However, that being said, moderate regurgitation, especially asymptomatic, is not usually accepted criteria for valve surgery. The only mitigating factor that might be here is that he felt the regurgitation started quite recently (a couple of years ago) and has progressed quite rapidly to the moderate stage. He may be concerned that there's a rip or other damage that could increase the regurgitation dramatically in the very short term. There is a semblance of reasonability to that, because the saying goes, "The worse it gets, the faster it gets worse."

However, my guess (and I'm not a doctor and don't know much about your case, so it's just a guess) is that unless he has a reason very specific to your case, there's more time than he is estimating. I believe most cardiologists would simply start you on more frequent echoes, to ensure the regurgitation level doesn't sneak up on you, and that your left ventricle isn't expanding rapidly.

Please remember that your LV may have expanded - perhaps even a lot. There's an artificial demarkation between a "regular" LV and an "enlarged" LV. All the expansion it takes for your heart to get to that point doesn't count. It only counts after you reach that size. Sounds like all your other readings are great. If you do have surgery at a young age, you'll likely rebound rapidly.

As far as the "metal valve," he likely means a mechanical valve (vs. a tissue valve). They are mostly pyrolytic carbon these days (like a high-performance sports car, or a precision aerospace device), and only some have even a small amount of metal left in them. Mechanical valves last a long, long time, so they keep you out of surgeries for much longer than tissue valves, perhaps even for life. You will need to take Coumadin (warfarin) to avoid strokes, but many people do that with few issues.

If you were to have surgery, eight weeks would have you back enough to handle a newborn without undue concern. However, your second-opinion notion sounds like the best route to me.

Best wishes,