Accuracy - Echo vs MRI

[Tori 34]

Hello everyone!

Just a little in the way of background first of all. I joined this site over three years ago when I was told by the chap doing my MRI that I would need valve replacement within 6-12 months due to my BAV. When I saw my cardiologist it became clear that I had been misinformed, my aortic stenosis was classed as moderate. The years have rolled past, I remain asymptomatic, and I've also gone on to have a gorgeous little boy who is now 18 months old.

A fortnight ago I went to see my cardiologist, having had my annual ECG, chest X-ray and Echo. The echo shows that the aortic stenosis is now severe with an AVA of 0.8cm2. There's no indication of any damage to the aorta, and there's only borderline mild concentric LVH with normal LV size. An appointment for an MRI was booked for me (due next week) and my case was presented at the Adult Congenital Multi Disciplinary Meeting at my hospital. I received a phonecall to say that the 7 doctors had unanimously agreed I should be timetabled for surgery, and I have an appointment with the surgeon at the end of this month.


1) Is there a possibility that the Echo is inaccurate? Has anyone experienced the MRI showing different measurements to the echo? I'm holding out hope that the valve area is going to prove to be bigger than the echo suggests, which could go some way to explaining why I have no symptoms

2) At risk of sounding like I'm contradicting myself within the same breath (!) whilst I say I have no symptoms, throughout the past I have felt exceptionally tired. Could this be due to my heart? My understanding was that symptoms were dizziness, chest pain, breathlessness (I have none of these) and also fatigue - but this is after exertion, not in the way I am experiencing it. I feel better after I've been at the gym, so should I assume my general tiredness is unrelated to AS?

3) Given I'm leading a full and active life, is it possible I am being referred for surgery too soon? I asked the cardiologist - prior to being told that the valve area had now narrowed further - if I would be fit and well enough to go through another pregnancy (it never crossed my mind that anything had changed!) When I saw the referral letter from the cardiologist to the surgeon, as well as the letter the cardiologist had written to my GP, both referred to me being "keen to conceive in the near future". I am concerned that the medical team came to this decision because they were given a steer I was adamant I wanted to have another child. I have a strong preference for avoiding surgery for a while longer and just enjoying the two lovely kids I have, if that is the case.....

Many thanks for reading.

Victoria

 

[epstns]

Victoria,
I'll try to address your questions. Although I'm a guy, my case is somewhat similar to yours.

1. It is possible that the echo is innaccurate, but if so, the error is often minimal. The echo is a test which is known to be somewhat operator-dependent. Different technicians may get different results for the same patient on differend days. That said, the differences are usually in the tenths of a square centimeter - usually not so large as to change a recommendation regarding surgery. It does happen, but I would not expect it to.

2. While shortness of breath, fainting and chest pain are the "cardinal" symptoms of acute aortic stenosis, there are others that are more subtle. If you present with any of the cardinal symptoms, the docs are likely to reccommend surgery sooner rather than later. Your frequent and profound fatigue is similar to that which I felt in the year or two immediately prior to my surgery. In fact, the primary reason I chose my surgery date was that I was "tired of being so tired." As far as my cardio was concerned, from my echo numbers I could have had the surgery sooner, but from my quality of life (at the gym 5 days a week, etc.), I could have waited longer. I just decided that it was time.

3. If, in fact, your valve area proves to be around 0.8 cm2, I would not say that you are being rushed to surgery any too soon. Once our valve areas fall below 0.8, the American College of Cardiothoracic Surgeons classifies our condition as critical. With valves having areas that small, they feel that the possibility of sudden cardiac death rises to an unacceptable level.

Victoria, I'm not trying to paint a picture of doom and gloom. I'm only trying to indicate that in my experience (not a doc - only an long experienced patient), you are being given some good advice. While all of the surgery stuff may sound fearful, literlly all of us make it through and come back to lead the rest of our "new" lives as fully as we have dreamed them.

 

[Tori 34]

Thanks for your response Steve - very much appreciated. I did actually call my cardiologist and expressed my concerns about being rushed to surgery due to my comments about pregnancy. She told me that her opinion would be the same regardless - as you have said above - that the valve has narrowed so significantly that regardless of symptoms surgery needs to be timetabled, with an expectation that I will have the operation within 6 months. The surgeon will be recommending a tissue valve as they believe by the time the tissue valve needs replacing, it won't need to be done by OHS.

Given you were told you could have had surgery earlier, how was your performance at the gym - by which I mean, did you modify your training? I ask because I was running about 40k a week until I found out that I would need to have surgery. Whilst I feel physically capable of running, I am worried now that I am being reckless by working out. The cardiologist said that I should stop training for the Half Marathon that I planned to do, but she'd stop short of telling me not to work out. Were you given advice about cardio exercise (I know weight lifting is meant to be a big no-no)?

I feel very positive about the surgery - my BAV was identified shortly after birth so I've had 37 years to adjust to the idea it would happen at some stage! I'm just keen to make sure that I am careful, without being paranoid about my lifestyle in the meantime. Its a difficult balance to strike!

 

[Ola Thoresen]

Re: Accuracy - Echo vs MRI

Just a quick comment on the case of "no symptoms".
I had surgery this January, and like you I was sure I had no symptoms. My AVA was about 0.5 at that time, and the doctors were quite worried. However I had no problem to do 4-5 hours of skiing several days in the holidays just before. And the summer 2012 I walked the Inka trail (5 days). I was working out 3-4 times a week, and generally felt fine.

But after my surgery I really feel a difference. My stamina is a lot better, and I beat all my previous records at the local gym.
So even if I didn't believe that I had any problems, and my body obviously had adapted quite well, I was really surprised at how much of a difference it made.
And this is just 3 months post op.

 

[tom in MO]

I echo Ola. I thought I had no symptoms, and I am no athelete. But 3 months after surgery, I was no longer huffin and puffin going up and down hills with my dog. Presurgery, what I thought was normal was not.

 

[epstns]

Victoria,
I was diagnosed about 9 years before I finally had my valve replaced. The first 6 or 7 years, I kept on at my usual pace - running daily, 3 to 4 miles at a 7:30/mile pace. Then I noticed that I just felt "bad" trying to keep that pace, so I slowed down to what was comfortable. As I review my daily journals, I see that over the 2 remaining years prior to my surgery, I slowed from 7:30 miles to almost half that pace. As I look at the numbers, it was evident that in order to stay in my comfort zone, I had to slow dramatically.

Fast forward a few years. I am now 2 years post-op, but now have a pacemaker and two knees that don't want to even think about running. Until just recently (I'm now taking a short break to deal with a minor, non-heart-related surgery) I was back to the gym 5 days a week. I typically walk or jog 1 to 1.5 miles, at about an 11:30 pace, and ride an Airdyne exercise bike at a speed of about 15-16 mph for 15 to 20 minutes before that. If my knees would allow it, I would be jogging at about a 10:00 or 10:30 pace. Not fast, but I'm now 65 years old, so I don't feel at all bad about the pace.

My point is that I did most definitely slow down. I also, I feel, got back most or all of my prior capacity but cannot use it all due to knee pain. I do most definitely feel better over-all, (even with the pacemaker) and notice that things that I expected would leave me huffing have had little to no effect on me. The human body is a wonderful machine. It can compensate for a lot of internal shortcomings, but once repaired, we definitely feel the difference.

 

[Lucky]

Hi Victoria,
I am awaiting an MRI following an echo which shows my aortic root has dilated to 5cms and I am pretty sure the MRI will only confirm the echo results.

I was working full time prior to having my AV replaced but just found the tiredness as my only symptom.

The only thing I would suggest is that you discuss the state of your aortic root so that you do not end up like myself needing OH again 11- 12 years down the line.
There is alot more information available about the connection(if you will excuse the pun) between BAV and connective tissue disorder, which can then affect the aortic root.

Also at the sound of teaching your grandmother to suck eggs have your siblings and children been checked for the condition?

Best wishes for the future,
Adrienne

 

[Heart Of The Sunrise]

If you want super accuracy get a heart catherization and a transespochgeal echo. Yes, both are for more invasive than a MRI or a standard through the chest echo. But, do them and you will learn exactly want is going on and how to fix it. I had them done and was stressed out about the invasive nature of them. But, when all was said and done...it was easy. I was on Versed. I remember talking briefly with my cardiologist before the procedures.......then next thing I was waking up in my room. Piece of cake. Found a great place to sleep....family room couch. It is also where one of my best friends is. Lexy our parrot. She is quite happy that I am finally home. First full day at home post-surgery.

 

[Roberta]

If you want super accuracy get a heart catherization and a transespochgeal echo. Yes, both are for more invasive than a MRI or a standard through the chest echo. But, do them and you will learn exactly want is going on and how to fix it. I had them done and was stressed out about the invasive nature of them. But, when all was said and done...it was easy. I was on Versed. I remember talking briefly with my cardiologist before the procedures.......then next thing I was waking up in my room. Piece of cake.

Everyone has given some excellent advice. I echo Heart Of Sunrise's suggestion re: the TEE or Heart Cath.

FWIW...my echo was .5 presurgery and I found out that my actual reading intra-op (through TEE) was closer to .9; however, I still received a new valve. Apparently, my valve was very calcified and because I had possible symptomology, the surgeon didn't want to take any chances. My point is there are other parameters that the surgeons consider.

All the best to you. Keep us posted.

 

[epstns]

As for the heart cath - I was terrified of it all the time I was in The Waiting Room. Turned out that it was a total non-issue. The versed/fentanyl mix they treated me to was just the easiest way to go through the procedure. Recovery afterward was no big deal, either. Took it easy (no long walks or fast movements) for a couple of days, but I had the cath on a Thursday and was back to work on Monday.

Actually, it was rather interesting. I wasn't supposed to be awake, but several times I awoke enough to see what was going on. Couldn't feel anything, but I could see the monitors. Afterward, they even gave me a DVD copy of the video of my tests. Cool stuff. . .

 

[bivalve1]

Dear Tori, I too have a bicuspid valve and am asymptomatic. Age 63, gradient now 75 (scary - gone up from 58 a year ago), valve area .8 cm. I don't know how I can have no symptoms with these figures, and may well have 'unnoticeable' symptoms such as very faint chest pain. I've been offered an operation soon, but my daughter aged 31 is pregnant (24 weeks now) and also had an emergency op for bowel cancer 17 weeks into the pregnancy. I want to wait till she has had her baby, and finished chemo, and is recovering, before I have the operation. My situation is not very like yours, except for the lack of symptoms! But I feel like talking to others about it. I haven't heard of MRI scan being used to diagnose valve - should I ask for it?

 

[normofthenorth]

Tori, most experienced HVR surgeons have lots of stories about super-active patients whose AVs were so deteriorated the surgeons marveled that they survived the trip to the hospital. My fancy and experienced surgeon told me (maybe pre-op) about a woman who'd scheduled her AVR for the day after a big marathon she was determined to run. She ran it, and showed up the next day for the AVR, and the surgical team discovered one of the most "wasted" and calcified AVs they'd ever seen.

Me, I would have bicycled aggressively to my own AVR if I could have figured out how to get the bike home afterwards. I had only two mild spells of SOB during high-speed walking -- one of them just after running up a few flights of stairs from a subway platform. It wasn't much, but they were my first symptoms, and they switched me from dilly-dallying to scheduling the op. A year pre-AVR I was also playing competitive volleyball (court and beach, including 2-on-2) until I tore my second Achilles tendon! During that rehab I don't have any serious cardio evidence, though I'd returned to full-on urban bicycling (without symptoms) by the time my AVR was scheduled.

After my AVR, my surgeon told me that my BAV looked crappy enough for me to join the "elite group" along with that marathon-running woman (though he may say that to ALL his patients, FAIK!).

If you stop to think about it, there are many "bottlenecks" and factors that limit the amount of blood that flows through the heart on each pump-cycle. The Effective Aortic Area is only one of several, and it's primarily the very narrowest of the bunch that does all the limiting. Put another way: If you set up a flow system, like a garden hose, and have several constrictions or narrow couplings in it, changing the size of the third-smallest one probably won't slow down the flow noticeably, because the very-smallest one is doing most of the limiting. So depending on the rest of your heart's geometry, changing your EAA from 1.0 to 0.8 cm2 may not actually decrease the volume of blood your heart is delivering. Or it might.

IMO, that "geometry" largely explains why some of us can have pretty miserably deteriorated AVs without it slowing us down much, even in CV-intensive sports. Unfortunately, that doesn't mean that we aren't suffering other negative effects of the deterioration, like LV enlargement, back-pressure regurg (and structural damage) at the MV, and maybe a higher risk of Aortic root damage from the increased velocity of the blood through the narrowed AV.

BTW, most of my experience with both MRI and Ultrasound is outside the cardiac area, but that experience makes me think that both technologies involve as much art and judgment as quantitative science. Here in Ontario, an MD and author known widely as "the Back Doctor" has often said that the best function of an MRI of the spine is to diagnose your worst enemy! And I recently heard another international expert on diagnostic tests confirm that he would try hard to avoid having an MRI on his own back, for the same reason ("false positives"). At about 93 or 94 years old, my Dad had a monthly series of 3 MRIs of his back that almost had him rushed into emergency surgery to remove a huge and growing infection of the spine. After long and heated discussions, the family-and-medical "team" narrowly decided to hold off, despite the fact that the MRI images were very alarming, and each one was significantly worse than the one(s) before. About the same time he got the third and most alarming MRI, Dad announced that his backache had gone away, checked himself out of the hospital and went home, and lived pretty well to 98 without another backache(!). My own UltraSound experience -- admittedly direct imaging, not Doppler-style echo imaging and certainly not heart-valve imaging -- was similarly contradictory and confusing and at least mostly wrong, despite good equipment and top-notch professionals.

So I'd go for multiple and varied tests, if you want to rely on "scientific" measurements to guide your decision. And treat each one with caution, if not suspicion.

 

[Tori 34]

Thank you everyone for your anecdotes and advice - it is all very useful and very much appreciated. I had my MRI yesterday, and now have just a few weeks to to until I meet the surgeon, so I will update again at that stage.

Adrienne - I haven't my kids looked at to see if either of them have a BAV... I'm not sure what the process would be - presumably a GP visit and potentially then a referral for them to a cardiologist?

To all those that commented about potential other tests, I'm not sure (as a UK resident) being treated on the NHS if I can ask for any further tests - or whether that's a standard 'allowance'! I can certainly ask....

bivalve1 - I'm really sorry to hear about your daughter. Sounds like a very stressful time for you. From what I am hearing it sounds like different hospitals use different combinations of tests. Presumably you know about the AVA due to an echo? Have you had any other tests? Have you been referred to surgery and set a date for after the arrival of your grandchild? The reason why I ask is that I believe I was sent for an MRI because the doctors were already certain that I need an op, and are using the MRI to be sure that there's no damage to the aorta and a cross check against the info already found in the echo. The best thing you can do is speak to your cardiologist ......