oo0My_Valve0oo
Well-known member
@Teapotimus In March '23 you said the cardiologist mentioned that you proved the whole team wrong. Was he referring to the future they had anticipated vs. what unfolded or something else?
Backwards trend in Echo Measurements
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Teapotimus
Well-known member
I believe he was just referencing the future they had anticipated. To expand on this, he told me during that appointment the whole ACHD team at OHSU believed I would need valve replacement within 6 months of my initial appointment. The initial appointment was in 2021, a couple of years prior.
I believe this was a fair assessment as I was near the 'very severe' or 'critical' threshold for AS. In addition I had a 48% regurgitant fraction, and some amount of LVH along with mild dilatation of the LV.
Today I have moderate AS by gradients and mild by AVA, no LVH or dilatation and just saw my regurgitant fraction drop by 14%. So AR is still in the severe range but that improvement is exciting.
Teapotimus
Well-known member
Had my appointment with my Cardiologist and it was interesting.
The recommendation was to switch to annual imaging as she has gone back over all of my imaging and I'm firmly in the mild/moderate camp for stenosis and down from severe to moderate/severe on the regurgitation side. I intend to continue everything I've been doing but I've come a long way from my first appointment, it's pretty surreal.
3 years ago a surgeon was telling me I needed surgery within 6 months and apparently the whole team where I got a second opinion thought that too. Today I'm being told to reduce my imaging frequency.
The recommendation was to switch to annual imaging as she has gone back over all of my imaging and I'm firmly in the mild/moderate camp for stenosis and down from severe to moderate/severe on the regurgitation side. I intend to continue everything I've been doing but I've come a long way from my first appointment, it's pretty surreal.
3 years ago a surgeon was telling me I needed surgery within 6 months and apparently the whole team where I got a second opinion thought that too. Today I'm being told to reduce my imaging frequency.
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That's great news!
I would absolutely keep doing everything that you're doing. It is a mystery why things appear to be improving, but I would not change a thing that you are doing.
carolinemc
Well-known member
Got to love research and those doctors get educated on the updated information that not only helps them, it helps us the patients. And the frequency after surgery is normal, I have the Echo done once a year.
Teapotimus
Well-known member
I haven't had surgery.
I was told I needed it imminently years ago, but my AS and potentially now my AR is improving without surgery. I found the suggestion to go to annual imaging interesting, as I've been biannual for years.
It's an odd dichotomy where the professionals won't directly acknowledge what's going on with my results, but now two Cardiologists at two institutions have told me I can go from biannual visits to just annual. At first I was resistant, but with multiple results putting me in the mild/moderate range for AS, it makes sense at this point.
carolinemc
Well-known member
You are so lucky that two are on the same page. Annual imaging helps to catch anything that changes within a year. It caught my mitral valve calcification three years ago. And my cardio trips are two a year. So it is easier when they just monitor the heart and stuff. Life is easier then. Have a great weekend.
I am just getting caught up on your story and progress. This is amazing news. I hope this trend continues for you.
I have had a number of echoes over the years that has been erroneous. I am currently dealing with discrepancies in findings. I have met with a cardiac surgeon, but the last echo results weren't as bad as the previous. I have asked for a senior technician for my next echo. Echos and accuracy are also operator dependent. Glad you were able to get a cardiac MRI as another test to ascertain your diagnosis. I am hoping to get this as well.
I have had a number of echoes over the years that has been erroneous. I am currently dealing with discrepancies in findings. I have met with a cardiac surgeon, but the last echo results weren't as bad as the previous. I have asked for a senior technician for my next echo. Echos and accuracy are also operator dependent. Glad you were able to get a cardiac MRI as another test to ascertain your diagnosis. I am hoping to get this as well.
Teapotimus
Well-known member
I agree, they are very operator dependent, I discussed this in some detail with my new Cardiologist.
When I look back at all of my results I definitely see the lack of accuracy and precision in dimensional measurements. But, my gradient readings and subsequently AVA measurement (continuity equation) have been moving in a linear fashion with no outliers. Perhaps the gradient readings are less susceptible simply due to the nature of echocardiograms and the doppler effect, not sure.
I only have two MRI results, but it appears that my regurgitant fraction is now heading down the same trend. Time will tell, but I continue to feel excellent, especially with the burden of surgery and valve choice far from my mind.
AZ Don
Well-known member
I was recently told that my ascending aorta was dilated, by over a centimeter from what it was initially. The problem is that my ascending aorta is a dacron graft that was put in 11 years ago. The cardiologist insisted that I needed a CT "to see what was going on there". Of course there was nothing going on, the echo was wrong, as they too often are. When the Cardiologist insisted on seeing me early for the next echo because he was still concerned with what the last echo showed I decided to switch providers, as much to get a new echo technician as a new Cardiologist. Very happy with the new team and as expected my first echo with them showed no new issues.
Years ago I had some concerning numbers on the echo (ejection fraction < 45), that were confirmed in other tests. The Cardio told me that he could see on the echo that my heart was functioning better than the numbers implied. I wasn't sure about this so I got a second opinion who told me the same thing. In the following years the numbers got better. Ejection fraction is now over 60. I took away from this that there is more to the echo than the numbers. A good Cardiologist will review your echo themselves, not just read the report. I know that my new one did this, not so sure about my last one.
Years ago I had some concerning numbers on the echo (ejection fraction < 45), that were confirmed in other tests. The Cardio told me that he could see on the echo that my heart was functioning better than the numbers implied. I wasn't sure about this so I got a second opinion who told me the same thing. In the following years the numbers got better. Ejection fraction is now over 60. I took away from this that there is more to the echo than the numbers. A good Cardiologist will review your echo themselves, not just read the report. I know that my new one did this, not so sure about my last one.
ashadds
Well-known member
one of my echos put my lv dimension at 6.2 cms but subsequent echos were all normal < 5.8 cms
slipkid
Well-known member
I've had that as well. Mentioned it in detail already. Was a complete joke. Results made ZERO sense to the only person who bothered to read the radiologist report (IE: ME - who is not even a medical professional). Radiologist simply copied/pasted some other patient's (or a template) into my report. Neither my cardiologist nor my primary physician even noticed. In fact my cardiologist didn't even realize any of the mistakes even AFTER I told him about it. I had to SHOW HIM basically line by line what was wrong. Eventually he contacted the radiologist which led to me getting an apology "explanation" from the radiologist which actually DID NOT EVEN ACKNOWLEDGE 1/2 of the mistakes in his mess of a "report"!!!! Yet this crap went in to my medical records anyway.....
pellicle
Professional Dingbat, Guru and Merkintologist
I'm unsurprised:
1 it took how long before one guy outs this?
2 people only look for specific things and ignore the others
https://www.npr.org/sections/health...ists-can-miss-a-gorilla-hiding-in-plain-sight
About three years ago, Drew started visiting the dark, cavelike "reading rooms" where radiologists do their work. For hours he would stand watching them, in awe that they could so easily see in the images before them things that to Drew were simply invisible.
"These tiny little nodules that I can't even see when people point to them — they're just in a different world when it comes to finding this very, very hard-to-find thing," Drew says.
But radiologists still sometimes fail to see important things, and Drew wanted to understand more. Because of his line of work, he was naturally familiar with one of the most famous studies in the field of attention research, the Invisible Gorilla study.
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It is absolutely critical to get the gorilla-ectomy done before he does irreversible damage.
pellicle
Professional Dingbat, Guru and Merkintologist
the invisible ones are the worst ...
Teapotimus
Well-known member
Fantastic news, my recent TTE results have come in and my gradients have fallen again.
I'm now at 21/37 mean-peak. Rapidly approaching mild at this point.
We have also decided to go to yearly monitoring at this point instead of twice yearly.
I'm incredibly happy with this result and something dawned on me the other day that reinforces these results. I was reading a post about being able to hear ones own heartbeat before having the valve replaced. Well, I was in the same boat but I just realized that I can't hear my heart anymore. At some point it dissappeared, which I'm attributing to my gradients being less than half what they were 4 years ago.
At some point when time allows I'll try to put this entire story in logical order with the relevant test numbers and such.
I'm now at 21/37 mean-peak. Rapidly approaching mild at this point.
We have also decided to go to yearly monitoring at this point instead of twice yearly.
I'm incredibly happy with this result and something dawned on me the other day that reinforces these results. I was reading a post about being able to hear ones own heartbeat before having the valve replaced. Well, I was in the same boat but I just realized that I can't hear my heart anymore. At some point it dissappeared, which I'm attributing to my gradients being less than half what they were 4 years ago.
At some point when time allows I'll try to put this entire story in logical order with the relevant test numbers and such.
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Amazing news, once again. I hope that you donate your body to science so that they can someday understand why things appear to be reversing.
But, as long as they are heading in the right direction, it's all good news.SWarnow61
New member
I've had a similar experience in reversal. I'm in my early '80s with a tri cuspid valve. A couple of years ago my former cardiologist was alarmed, I was in the brink of severe AS and AR. He was recommending a near future Bentall procedure which I simply won't do at my age--I'm not going to die young either way. I'd been taking CoQ10 and fish oil for many years but added in K2-MK7, 600 mcg per day, and sublingual disodium EDTA. An echo three months later was markedly improved, shortly after that I added in modified citrus pectin after an online consult with Dr. Joel Kahn. My numbers have continued to improve since. For instance 11/22 AOV MEAN/PEAK PG 28,2/45.9, 8/24 14.8/28. I can probably post some charts in about a week with more data, most parameters are considerably better. But my new cardiologist insists that I haven't reversed my conditions, only that they "may" be stabilized. And despite the steady improvements over the last two years he cautioned me about drawing conclusions, citing differences in sonographers and facilities (yes, I've been to three different ones in last two years).
Teapotimus
Well-known member
This has been my experience almost exactly. I started at 44/78 mean-peak and am now at 21/37. I posted a chart earlier in this thread with everything but the most recent numbers. I have 4+ years of data now and it's a clear linear decrease from one echo to the next.
Like you I started taking CoQ10, fish oil and 500mcg of Mk-7. I also take a vitamin E tocotrienols supplement and drink a large quantity of Hawthorn tea everyday.
I also was told that I can't do anything to reverse my condition, but perhaps make other aspects of my heart function better. I've also been to multiple sonographers at this point and have been told about the discrepancies that can arise.
I find it funny that what we're experiencing is impossible but in my case I'm reducing imaging frequency because there's no longer indication for biannual appointments.
