Navigating Life with Bicuspid Aortic Valve: My Journey, Concerns, and Hope

Hello everyone,

I want to share a bit of my story, hoping not to bore you or go on too long.
My name is Sergio, I'm 44 years old, turning 45 next month, and I live in Madrid, Spain (EU). Professionally, I'm a filmmaker.


I was diagnosed with BAV by chance during a routine driver's license renewal exam when I was 30 years old. Without dwelling too much on the shock I experienced, I've been undergoing annual check-ups since then. Initially, the dimensions were about 3.6 cm for the ascending aorta and 4 cm for the aortic root (Valsalva sinus), starting from 2014 the echo follow up. In the following years, I was in complete denial and had a destructive lifestyle with alcohol, drugs, and smoking, but I continued to take my chronic medication (Congescor 1.25mg and Atorvastatin 10mg). I'm not sure if these medications are used in the United States or what their names are there. Over time, since 2019, in addition to the annual echocardiograms, they started doing CT to get more accurate measurements. Thankfully, the tubular aorta is normal, as is the mitral valve, and there are no signs (up to 2022) of aortic stenosis. The dilation has been progressive but more or less controlled, I believe. Reading about it, there are people who had to undergo surgery much earlier. The last CT scan was in 2022 (I will leave the detailed report at the bottom of the post).

I'm more frightened by the aortic root at 46mm than the ascending aorta at 42mm (although the scan states that there have been no changes since the last visit).

Here, I'd like to ask for your opinion: do they take into account a one or two mm margin of error, calculating things that we, or at least I, being not a doctor, do not know? For example, during the last CT scan, I was almost in total panic, and they recorded a heart rate of 122 bpm during the scan. Could this influence the measurement of the aortic root by a few mm?

Another doubt I have is how is it possible that in 2019 the CT scan indicated that the Valsalva sinuses were 45mm, then in 2020 42mm, and finally in 2022 46mm with "no changes retrospectively about last scan" written in the report? This confuses me a lot.

The aortic root has never been mentioned to me; it seems that the focus is all on the ascending aorta.

When I asked the cardiologist when and if they think about operating on me in the future, he simply said that for now, monitoring is necessary and that you never know. He gave me an example of a car driving on a road at night and how it might not encounter any obstacles by driving cautiously, but then a car might come up behind unexpectedly – a somewhat convoluted example that I don't remember well but that I understood at the time.

My hope is that I can live my whole life without surgery. I'm scared to death, especially because in the last year and a half, I've been doing sports that I've never done before.

I swim four times a week. I swim for an hour straight with only two short breaks for catching my breath.

I don't feel tired anymore; I'm in shape. I weighed 87kg and I'm 1.80m tall, and now I weigh 68.3kg and I'm fit.

It makes me angry; just now that I've completely changed my life, I'm afraid of losing everything, of not being able to do sports like now, of not being the same if I have to undergo surgery.

I've always been rebellious and reckless. I've been sober for five years thanks to AA; I eat well, I haven't smoked for two years (I vape with low nicotine levels). As I mentioned above, I was in a state of absolute denial; I didn't want to inform myself well about everything, I just took the medication thinking it was a congenital defect and that it wasn't serious.

On the other hand, I hope and dream that the time for surgery never comes, also because it has never been mentioned, but it has been mentioned that the dilation of a BAV can be stable or it can progress rapidly from one year to the next, hence the importance of keeping it monitored.

I'll leave you with the latest data from the 2022 CT scan. My next appointment is on July 8th (I always take a 1mg lorazepam pill before the exam, but even so, it's not enough to calm me down).

Any experience and advice are welcome. I hope you can understand my report despite the language difference, i translate everything witch chat gpt


Heart Rate: 120 bpm
Total IV Contrast: 100 cc
Study Quality: Good
Previous Study: 15/7/2020

CORONARY ARTERIES
Dominance: Right
Coronary Anatomy: Normal

Study not focused on coronary artery assessment. Coronary arteries not assessable due to cardiac motion artifacts.

Cardiac Findings: NoneExtracardiac Thoracic Findings: Nodular thyroid

Bicuspid Aortic Valve with fusion between right and left coronary sinuses

AORTA

The following measurements and characteristics of the thoracic aorta are observed:

Valvular plane: 24 mm

Sinuses of Valsalva: 46 mm (retrospectively, unchanged)

Sinotubular junction: 36 mm

Ascending aorta: 42 mm (previous 41 mm)

Pre TSA exit: 33 mm

Post TSA exit: 24 mm

Descending aorta: 22 mm

TSA: no alterations

The following measurements are observed in the abdominal aorta:

Suprarenal abdominal aorta: 20 mm

Infrarenal abdominal aorta: 15 mm

Mild infrarenal aortic atheromatosis.
Other intra-abdominal findings: none

Serghios said:

I'm more frightened by the aortic root at 46mm than the ascending aorta at 42mm (although the scan states that there have been no changes since the last visit).

Click to expand...

its ok ... at that level its within tolerance for ongoing monitoring and measurement rather than urgent surgery.

I'm sure it'll be fixed by your team when they do your OHS.

Best Wishes

Serghios said:

It makes me angry; just now that I've completely changed my life, I'm afraid of losing everything, of not being able to do sports like now, of not being the same if I have to undergo surgery.

I've always been rebellious and reckless. I've been sober for five years thanks to AA;

Click to expand...

I remember those thoughts well. I had just graduated from college when I had the surgery and thought that my life would be forever changed. Actually, the artificial valve has had NO meaningful effect on my life at all.

I am also a 33-year sober member of AA. I still live by "live one day at a time".......as well as many of the other guides of the AA program.

Welcome to the forum Sergios.

Serghios said:

Here, I'd like to ask for your opinion: do they take into account a one or two mm margin of error, calculating things that we, or at least I, being not a doctor, do not know?

Click to expand...

I believe that your CT scan is very good at estimating aortic diameter. At 46mm, you are not yet at the point where surgery is generally considered. In the US the threshold is 55mm. I believe your EU guidelines are about the same. They do repair the aorta at a lower threshold if they are going in for OHS for valve replacement, but they indicate you have no sign yet of aortic stenosis, so it sounds like a lower threshold is off the table for you currently.

It took 14 years for your aortic root to go from 40mm to 46mm. At that rate, you could be a long way off from needing surgery. Per your question, there is a little bit of margin of error in any given measurement. However, with 14 years of annual measurements, they should have a very good idea of your rate of growth and it is unlikely that they are going to be off significantly. The more annual measurements you accumulate, the more this will be the case.

By the time you need surgery, you will probably have 20 to 40 years of annual measurements of your aortic diameter in your history, and I doubt that there will be any guesswork going on as to where you are and that it is time for surgery. I don't think the question about measurement error is likely to create any doubt for timing. However, you may find some difference of opinion as to when it is time, based on the level of aggressiveness of the surgeon. Some have been advocating for the threshold to be moved to 50mm. At the same time, we have seen a recent account of a member whose surgeon wanted to still watch and wait, even though he was at 57mm.

1. Point of reference. Took me about 15 years to go from 4.7 to 4.9/5.0 and it was my stenotic BAV that triggered the surgery.
2. I also experienced variation due to testing. Sometimes smaller than the previous test. I believe that the tech performing the test is the most significant variable.
3. Per my cardiologists, you can not assume a consistent rate of deterioration. It just does not work that way for some people. Thus the need for annual testing to monitor.
4. If you spend some time on here, you will see that most folks here get through surgery and resume their normal lifestyle without much trouble.

HTH

Serghios said:

Here, I'd like to ask for your opinion: do they take into account a one or two mm margin of error, calculating things that we, or at least I, being not a doctor, do not know?

Click to expand...

Kind of. They should be accounting for the 1-2 mm variability when interpreting the results obtained.

Btw, your 2014 number could easily be an underestimate. The echo tests are not as precise as CT, the result depends on the angle of the test wand positioning. In which case your rate of progress would be even slower than you think.

In the CT handout I got there was also a mention of 2 mm as being a natural test results variability.

Serghios said:

Another doubt I have is how is it possible that in 2019 the CT scan indicated that the Valsalva sinuses were 45mm, then in 2020 42mm, and finally in 2022 46mm with "no changes retrospectively about last scan" written in the report? This confuses me a lot.

Click to expand...

The way I'd look at these numbers, they are perfectly consistent with "no change" interpretation if you assume the 2 mm testing precision. The average of the 3 measurements is 44.3 mm, and all results are less than 2 mm away from this value.

The "reduction" between 2019 and 2020 is very likely due to the measurement precision. The current concept is that aneurysms don't shrink on their own.

So I think your doctors are doing the right thing in including the known measurement precision in the interpretation of the data.

The precautions for patients with aneurysms usually include controlling factors that may result in the high blood pressure. This may be medications if your pressure is already high. Otherwise it's avoiding lifting heavy objects, getting too tired when exercising, controlling stress. There should not really be direct symptoms to manage.