in these same notes I have the Cardiologist who performed the official interpretation recommending surgery, and my cardiologist stating no indication for surgery at this time. Just makes it difficult to trust their opinions.
It is not uncommon for two experts to look at the same imagery and come to different conclusions. This is why it is a good idea to get another opinion. You have a diagnosis of severe AS, regurgitation and an aortic aneurysm, with the cardiologist who interpreted the echo recommending surgery. Given that your own cardiologist disagrees, it would call for at least one other consult in my view. From what you've shared, it sounds like your HMO is difficult, and so that may be easier said than done.
In my experience, I also had experts disagree on the same echo. My first echo had me at moderate AS, with some enlargement of my left ventricle, known as left ventricular hypertrophy. My own cardiologist said that surgery would likely be many years away, probably between 5 and 20 years away. I sought a second opinion and booked a consultation a few weeks later with the head of cardio thoracic surgery at Cedar Sinai. He had a very different opinion. Based on my enlarged ventricle, he recommended surgery right away and said that he had an opening next week. That was a shocker.
So, I sought out a third opinion and went to Scripps in San Diego. Even though it had only been about 6 weeks since my first echo, the cardiologist at Scripps wanted their own imagery done, so I got my second one. His view was somewhat in the middle of the other two consults. He said I would probably need surgery in 1-2 years, but not yet. He explained that my LVH was just mild and not severe enough to be troubling. Like my first cardiologist, he recommended echos every 6 months to monitor. So, basically, he was in between the other two consults, in terms of estimating when I would need surgery. I believe he was spot on, as I did become severe and get surgery about 18 months after that consult.
Not only did the experts disagree on how urgently I needed surgery, but the echos had some variance from echo to echo. The two echos, which were obtained 6 weeks apart had some significant differences, including one which said left atrial dilation. My previous echo and following ones did not have this finding. But, it was also off on many other metrics. For example, the findings of mean pressure gradient went like this, for my first 3 echos: 23mmHg; 40mmHg; 33mmHg. It was only with the following 2 echos was I able to see that the 2nd echo appeared to be an outlier. Ideally, it is good to have more than one or two echos over a period of time, to observe trends. There can be outliers and people sometimes make measurement errors, but the more data points, the more mistakes will stand out as outliers.
Here is what I don't understand.
You had an echo at age 12, which you pasted above, which found you had BAV and severe AS.
Then you had another one at age 30? Is that right? The standard of care is to have echos every 6 months when a patient has severe stenosis and I would think annually at a minimum. They waited 18 years? That is complete negligence.
After your echo at age 30, you were diagnosed again with severe AS, and they waited 2 years for another echo? Are there no other echos besides these two? At this point, having been diagnosed at such a young age, they should have a lifetime of imagery to see if there is a trend. But, it is what it is. Sounds like your HMO has issues with scheduling.
How did you get an appointment in weeks? Took me months to get the consult with the surgeon
Yes, I got my surgery appointment in weeks. It was in the middle of COVID also. They had an opening in 2 weeks, but I chose to get it 3 weeks out to get my things in order- I didn't want to feel rushed. Cedar Sinai and Scripps also would have been able to see me within weeks. Same with surgical consults- they few I have had I was able to schedule quickly.
HMOs can be difficult. I've had a lot of experience dealing with HMOs, as I was with Kaiser until I was 24 and now my elderly mother has Kaiser and I am here caregiver. I have found that they really try to avoid specialty consults. They seem understaffed and it can take a long time. Lots of nightmare stories with them. But, I have found that if you are persistent, they will eventually see you. I had to really push to get my mom seen by a neurologist for her memory issues, but eventually they caved.
months to get a second opinion from OHSU. Even getting an echo at this point is 4-6 months in my area.
Perhaps there is a shortage of specialists in your area. I would encourage you to push for another opinion and perhaps if you made enough noise they will see you sooner- tell them it's urgent. If echos are booking that far out, I would suggest you get your next one booked now, if your HMO will allow you to do so. You may or may not need surgery now, but you should get another echo in 4 to 6 months.
One thing that is interesting about your situation. You had severe stenosis at age 12. At age 30 you had severe stenosis and again at age 32. But, your numbers suggest that you are right on the border of severe, both by mean PG and peak jet velocity. Your cardiologist indicated that your imagery has not changed from the one you had 2 years ago at age 30. By contrast, my stenosis went from moderate to severe in 20 months. On the surface, it sounds like your stenosis might be progressing very slowly. If that is the case, maybe surgery will be a ways off for you. But, I think that you need more points of data and more consults to really know where you are at. Yes, experts can have completely different opinions. This is where you want to be your own advocate and seek other expert opinions. I would try to get at least one consult with a surgeon and at least one more cardiology consult. And, I would definitely not wait another 2 years for the next echo- 4-6 months would probably be ideal.
