Sorting out new information

[Karen]

I had my 2nd visit with my "new" ACHD cardio yesterday. I met him for the first time a year ago. At that visit, he referenced echoes etc. done by my previous cardio, and ordered a cardiac MR last October, but this was the first echo I had done at his office, with him reviewing the results of the echo and last year's MRI with me.

Bottom line is that I was very reassured on many points! But I'm interested in knowing if any of you have been told anything similar to what I was told yesterday concerning the measurement of my bicuspid aortic valve.

I've been very curious that my valve opening has been consistently the same size in the 3 1/2 years that it's been monitored. With my other cardiologist, the yearly echoes were done at the clinic, another cardio would study the test and write a report, and then a week later I would meet with my own cardio, and he would discuss the report with me. In every case, I believed that the "mild stenosis" was due to calcification of the valve. (Based on the expressed interpretations of the reports by my cardio!)

Well, my current cardiologist has convinced me that the size of my bicuspid aortic valve is just the size that my funky aortic valve is - just because it's bicuspid. (1.6 to 1.8 cm2 in every echo, heart cath, and MRI that I've had done). Probably has been this size "forever." There is no calcification, and the leaflets are thin and pliable and working quite remarkably well for a 2 leaflet valve - no leaking etc.

I'm very reassured and more confident than I have been in years that there is likely NO imminent need for any kind of "intervention." In fact, many of the values in previous tests seem to be de-bunked with this most recent echo: no left ventricular enlargement, no bi-atrial enlargement, no pulmonary hypertension, no "thickening of the aortic valve." Even the "mild enlargement of the ascending aorta" seems to fall within acceptable bounds.

I hope I'm not being overly optimistic about my "reprieve," but I feel like I'm no more at risk than I believed to be the case, since my first surgery 40 years ago, until the bicuspid valve was detected 3 1/2 years ago. Instead of "worrying" that surgery may be in my future in the next 4-5 years, I expect that I may never need surgery - or at least not before my late 60's or 70's...

My assumption has been that if the valve were narrowed at all, I was on a track for further progression of stenosis...

Any comments or similar situations to share?

Sorry for the length of this post...

Karen

 

[ALCapshaw2]

Very Interesting Report Karen!

Do you have copies of ALL of your Echocardiograms?

If not, I recommend that you get copies.

FWIW, I have created a Spreadsheet to track ALL of my Echocardiogram measurements. This makes it very easy to see Changes and Progression of Disease, "even if" the numbers are still in the "normal" range.

Given your history, I would recommend Annual Echocardiograms, 'just to be safe', assuming your Cardiologist concurs. The important consideration at this point being to "keep an eye out for changes".

As Reagan quoted the Russian phrase, "Trust but Verify"!

In the mean time, ENJOY !

'AL Capshaw'

 

[Susan BAV]

Nice to read this!

Nice to read this!

I sure hope it's all as good as the tests are showing it to be. That is excellent news for you! How frequently will they want to continue monitoring you?

When I had my valve replaced, one of the things the surgeons asked me for was the old surgical report from my COA repair from 20-some years previously. I didn't have it and didn't figure I could get it but I think I might contact the old hospital and try to get a copy for my records. Can you do the same, if you don't already have a copy? Perhaps, if your bicuspid is noted and measured within your old records, that would top off and completely verify what you've been told.

 

[Karen]

Yes, the cardiologist says we'll continue to do echocardiograms every year - if there are significant changes (size of the heart OR the valve etc.) we will do them every 6 months. Also we will do "periodic" MRI's to monitor the ascending aorta.

I do have reports on all the heart tests that have been done in the past 3 1/2 years. I really doubt that there would be much benefit from from having the surgical report from my other surgery. My present cardio knows well the cardio that diagnosed my coarctation 40 years ago and says the first one wouldn't have missed also diagnosing the bicuspid valve. But I'm sure he didn't, because he definitely did not tell my mother or me anything about a situation that needed to be further monitored. And when I saw my surgeon 5 years post-op, he told me I could forget I ever had surgery... I believe the medical community was still figuring all of this out 40 years ago. I only had an EKG and a chest X-ray before the surgery.

Thanks for your comments...

 

[Arlyss]

Measuring the Aorta

Measuring the Aorta

There is a trend in medicine to describe the aorta's enlargement in words and use an average size based on the general population as a frame of reference for what is "normal".

The diseased aorta does not lend itself well to this. Aortic surgeons define the aorta precisely, in terms of carefully measured size. Evaluation of the aorta should take into consideration the age, gender, and body size of the individual.

Following is a presentation to physicians done by Dr. Eric Isselbacher regarding measurement of the aorta

http://www.conferencearchives.com/aats2006/sessions/player.html?sid=060402-AVW1500.PGAC.10

"Mild enlargement of the ascending aorta", which Karen referenced above, does not provide enough information. It can in fact be dangerous, because calling something "mild" indicates that there is little to be concerned about.

The aorta should be measured in each of its segments and the dimensions given precisely in cm or mm.

Those measurements should be interpreted in the context of that individual's body, symptoms or lack of, and family history.

I encourage everyone who might read this to insist on knowing the actual dimensions of their aorta and how that relates to them as an individual. The evaluator needs to carefully review all that is known about aortic disease.

The abnormal aorta is not something to consider "mild" or "moderate". It is weakened, thinning tissue that may be subject to tearing or rupture - size is one important consideration, but there is more to think about, including blood pressure control.

Best wishes,
Arlyss

 

[Karen]

Arlyss, thanks, as always, for your input...

Actually, we do have the exact measurements of the aorta. Last year's MRI measured the ascending aorta as 3.6 cm. All other measurements were 1.6 cm to 2.2 cm. So "we" are watching that, for sure. The cardio that has taken over my care, was the one who ordered the cardiac MR last year, to give us a baseline on the size of the aorta, and he is very proactive in monitoring that part of it.

I only described it as "mildly enlarged" in the context that, given the more clear information about my bicuspid valve, there is certainly nothing at this point that would be considered "actionable." But you are right, those exact numbers are important to know.

This has been a very interesting week for me. I have assumed that EVERY member in the forums who has been told they have a narrowed valve, has had a calcified valve. I share this info because it has made a huge difference in how I view the progression of my own situation, and would think that everyone should understand more explicitly the nature of any valve stenosis. Is it the anatomy of the valve OR calcification? 'Seems a significant distinction to make.

Karen

 

[Arlyss]

It is so good to see that Karen does have the actual measurements of her aortic segments!

By definition, an aneurysm is an enlargement of a blood vessel to a diameter that is 50% or more greater than normal. If normal was 2.5 cm, then at 3.75 cm the bulging would be called an aneurysm in that person.

How can anyone know what is normal for an individual, if the ascending aorta has already started to bulge? The descending aorta is just slightly smaller and its size can be used as a reasonable indicator.

It is so true, as Karen has pointed out with her experience, that it is very important to have the valve assessed carefully and accurately.

It is well worth it to seek out opinions and care that is expert and will carefully monitor those with aortic disease! It is encouraging to see what a difference it has made for Karen.

Karen, I am so glad you have sought out expertise to help you and hope you have many wonderful days ahead! It is so important to know where you stand with both your valve(s) and aorta. It is something that we have worked very hard to do with my husband, and despite the strands that just "came out of no where", it remains our goal to do all that is known to stay ahead of BAVD in his body.

Best wishes,
Arlyss