Newbie with Aortic Stenosis and terrified!

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D, Al suggested you should begin speaking with surgeons; let me add my voice to that. Many cardiologists, including my own, want to wait, wait, wait until one's symptoms become a serious problem. This is your heart, your problem and it isn't going to get better on its own. From this point, the longer you wait, the greater the possibility that permanent damage can be done to your heart. Speak with a heart surgeon. The worst that happens is that he or she agrees that it isn't yet time for surgery. That's the worst. It is far more likely that a surgeon will tell you that the time to act is now. The less damage to your heart - the more fully you recover. The healthier you are at the time of surgery, the better your recovery will be. We hire cardiologists for their expertise but they cannot be the sole arbitrator of care. Speak with a surgeon for a second opinion, not another cardiologist.

Larry
 
I don't like the attitude that they won't touch you unless you have symptoms. Well, let me tell you, the SECOND I drop below 1.0... if I have to spit nails at someone, I will. I am fiesty by nature :) I'm not waiting to "pass" out. Sorry. She did assure me that the rest of my heart looked good so I am guessing that it's not enlarged or damaged.

I have Aetna through my husband's insurance. Now, I work for one of the biggest companies in the world but believe it or not, they have slowly taken away benefits from the people and when I started working here in Dec, we decided to stay on my husband's plan. His company has a perk of health advocates so I am working with one of them. I'm pretty sure the procedure will be covered as I have a PPO Choice. THANK GOD it's not an HMO.

I know there are set backs to the Ross Procedure but I have been giving it mass thought. I'm in San Diego and there is a guy up at USC that does it. I believe he did Adam Pick's procedure.

I know you all have discussed the Coumadin thing, but I just don't want to deal with such high maintenance of a drug.

I do wonder if my palpatations I was getting last year and my HORRIBLE blood pressure has anything to do with my valve??? Are they two separate things? I started getting high blood pressure around 2007 and it really came out of nowhere.

Is it possible to have symptoms at 1.0?

I hope to start talking to surgeons soon. How do I find which particular surgeon in my area does valves? I want the guy that does them all day long :)

Deux
 
Hi DeuxofUs - Just saw your post. Wanted to welcome you to the site. From what I've read, labile hypertension is often seen with bicuspid valves. While keeping in mind that there are apparently various degrees of the bicuspid disorder, there is a site where you can read further on bicuspids, though it may be a bit overwhelming, www.bicuspidfoundation.com. I'm in SD County too and I also decided to consult with experienced surgeons up on LA, though there are other members from this area who had surgery in SD. Take care :)
 
DeuxofUs, I think your last post asked the most important question you could ask -- whether your recent symptoms are related to your Bicuspid Aortic Valve and its stenosis, or not. Unfortunately, I have no answer for you, not even an educated guess. But I think the answer is the key to your next steps.

IF these are stenosis symptoms, then you should get the valve replaced ASAP, IMHO. Regarding the Ross Procedure, there's another recent thread where the collective wisdom here has addressed that very issue, and you should probably track it down before "getting married" to the RP.

IF your symptoms are NOT related to the stenosis, there are some excellent reasons to try to get past the anxiety of being "in the waiting room", address the symptoms as whatever they really are, and live a good and full life until your congenitally wonky BAV has "declared itself" with further stenosis. That may well happen in conjunction with some other things that can be fixed at the same time (like an extended Aortic root, or even an Aortic aneurysm. That's ONE reason to wait, especially if you're BAV-asymptomatic.

I think the case for delay -- provided you're valve-asymptomatic and provided you're feisty enough with YOURSELF to win the mental game and get on with life while you're "in the waiting room" -- is very strong, up to the point where your heart starts over-compensating (like significant Left Ventricle enlargement) to the point where some of the changes are permanent. (Cardiologists and surgeons should both be able to help gauge where that point comes.) But until then, every year you delay not only delays a likely re-op a year (and pushes it a year closer to your life expectancy), it probably delays it much MORE than a year, because tissue valves (animal-tissue valves and -- I'm assuming -- RP valves, too) last longer in older patients than in younger ones.

Emotionally, we'd probably all choose to "get 'er done" as soon as we realized that the surgery was eventually inevitable, but there are some good medical reasons not to jump too soon. Waiting too long is also a Bad Thing, so expect to be tested regularly! Fortunately, the tests are all easy and painless until you get into the invasive tests (cath/angio and TEE), usually just before surgery.

Good luck with the physical and mental challenges. (Hope I haven't added to your stress level.)
 
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Deux - If your current cardio wants to wait for symptoms to show, isn't ongoing exhaustion/extreme tiredness a symptom? That was good enough for my cardio. It may not be one of the "Cardinal" symptoms (shortness of breath, fainting or angina), but it is a precursor to them and we felt it wise to act before any major symptoms occurred. I felt that once I presented with one or more of the major symptoms, then it would be likely that some damage had already occurred.

If all else fails, try for a second opinion.
 
Here's my aorta as of 9/2009 :D

aorta_web.gif



Obviously it doesn't actually rotate like that, I just assembled all of the different reconstructions in to one animation so you could see all of the angles in sequence.
 
Well, I have no exhaustion, shortness of breath etc. I really feel FINE. Although you know, it's one of those things that can be so slight that I wouldn't notice it until I get a new valve and then maybe I might feel like running a marathon. I'm doing all my research now and working with a health advocate. I meet with my cardiologist next week to ask all the questions. Even the complicated ones. I want to know what my mean pressure is.... I'm sure she will be surprised when she finds out how much I know after only a week!!!
 
Hi Deux & welcome to VR.

I hope you find answers to some of your questions here and comfort in knowing that you are not alone! We've all traveled this road before, some of us more than once, but in the end, we're still here trying to help others cope with their fears.

I hope you have a good appointment w/your doctor and I'm sure he will be impressed with how much you've learned already!

Take care! :)
 
Hello and welcome !
My story is similar to yours but I had lots of symptoms that I was in denial about.
Dizzy spells, palpitations, chest pain, SOB, etc. Fortunately you are under a doctor's care and have insurance.
You may want to do ALOT of research before committing to the Ross Procedure. It is a double whammy.
Best wishes.
 
DeuxofUs,
Ask for a copy of your echo results. If you can have them fax it to you maybe you will have time to come up with better questions. You can skip some of the ones for which you will already know the answer, and focus on the problem areas mentioned in the report.
Cat
 
Just my thoughts...

The symptoms often aren't easy to spot on yourself. Most people who have them don't accurately recognize them. Fatigue, arrhythmias, shortness of breath earlier than you used to get it are all easy to ignore or to put down to age or a need to exercise more. The problem is that they creep in slowly, rather than just showing up (except maybe for the arrhythmias). Sometimes, people don't realize they had symptoms until they go away after the surgery. The arrhythmias tend to be PACs and PVCs, that are relatively harmless, but scary and sometimes somewhat painful.

Angina is also tricky. From TV and the movies, we have a vision of someone clutching their heart and collapsing in agony. Well, the pain often isn't at the heart - it may be in the arm or back, or more commonly like a sudden lump at the top of the throat, or the feeling at the top of your lungs that you've been running in freezing weather (when you haven't). In women, it's not uncommon for it to show up as jaw pain - dentists are fairly aware of it. It doesn't show up every time you exercise, and it doesn't always require exercise to show up. And it doesn't usually cause people to collapse. It often hurts a bit, but in ways you could ascribe to something else. You can generally walk and do normal things while you're having angina. It doesn't mean you're going to die right then (or even soon), but it's your heart's way of talking to you.

The "moral limit" for aortic opening size is 1 cm². Anything below that size is defensible for surgery. More recently, a percentage of cardiologists have been holding people to much lower limits: .8, .7, even .6. While this may be acceptable in many cases for much older patients, my personal bent is that it's not appropriate for a younger, more active patient. Such a small opening could potentially be more detrimental to someone of your age and activity level, and be responsible for more damage and enlargement to the heart, perhaps even some level of heart damage that remains after the surgery. The better the condition of your heart before surgery, the better the likely condition of it afterwards, and the more likely a swifter recovery. As cardiologists don't often treat younger patients for this, I think they get the mindset that you're older and less active than you may actually be. You will find much of the information and even the recovery instructions tend to be geared to the more common, elderly patient.

Many cardiologists are also reluctant to send patients for surgery because they are uncertain of the risk of waiting, but they are certain that the risk of surgery runs 1%-2% in a good, but untried patient. They seem particularly reticent to send a younger patient to the table, even as the risk of collateral heart damage from waiting too long begins to rise.

That's not to say at all that you should get surgery as soon as you're below 1 cm². First off, echoes aren't that accurate, and it may not be a correct reading (they're often off by a point or even two). Also, most people seem to tolerate smaller sizes than that (.8 cm² sounds like a good compromise) without any permanent damage. It just means you should be very aware of your left ventrical size and any other abnormalities that your heart displays, and if you become truly concerned, you know you're in the moral ballpark for a thoracic surgeon. If you become truly concerned with the delay, and feel that you seem to be headed for permanent heart damage, you should be talking to a surgeon for another opinion. Your body will likely be sending signals (symptoms) if this is the case.

As far as the Ross Procedure, there seem to be excessive issues with bicuspid hearts getting RPs, as the self-donated valve often has some of the same tissue issues as the original, and has a higher percentage of failure than a valve from a non-bicuspid RP recipient. Surgeons with a great deal of experience are more apt to make a good choice. However, the younger the patient presents, the more likely it is that tissue problems exist at some level. The risk, as stated earlier, is that you wind up with an extra surgery, more scar tissue and two valves that need to be monitored, instead of one. You should discuss the RP option very carefully with your surgeon.

Best wishes,
 
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Thank you everyone... I am reading your posts over and over again... and absorbing this site...
I will have PLENTY of questions in the future.

Thank GOD for this site.
 
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