Next Scan June

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pearjas

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Aug 30, 2015
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Missouri
I went to the cardiologist on Friday. My old cardiologist retired and I was wanting to make a switch anyway, so it worked out. I had seen this doctor in 2019 so I was not "brand new" to him and he has experience with Ehlers Danlos Syndrome. It was just to re-establish myself as a patient this time around, basically. We are going to do a cardiac MRI in June-ish to monitor aortic root. In 2022, it was 4.3cm. 2023 is
the only year I've not had an echo, mainly due to insurance issues.

I did have some questions for him. He said caffeine was fine as long as it didn't have any obvious effects like increased BP, etc. He said light to moderate weight lifting was fine as well as long as I wasn't
straining. He also said activities that increase BP in the short term, anything from weight lifting to sex (lol) are not to be worried about given my BP is normally on the lower end and well controlled anyway.

In fact, I've been having issues with BP being too low. POTS was something I did discuss with him as well, and something he had already diagnosed me with in 2019. Everything I feel went well and I'm
hopeful this June's scan comes out either the same or maybe even smaller. Every now and then the following year shows up a tad bit smaller, but I know how it is...we're talking millimeters.

I began in 2015 at 3.9 and now at 4.3. I'd like to stop growing anytime now. :) lol
 
Hi

In fact, I've been having issues with BP being too low. POTS was something I did discuss with him as well, and something he had already diagnosed me with in 2019.
I believe I have something like POTS now (after COVID)


I began in 2015 at 3.9 and now at 4.3. I'd like to stop growing anytime now. :) lol
I guess all you can do is start thinking more about "what valve" because it will perhaps speed up soon

¯\_(ツ)_/¯

Best Wishes
 
I sure hope it doesn't speed up!! lol
well we don't really have many data points, but its not usually "linear" in progression once its starts progressing. Just as an abstract example:
non linear example.png

These are just numbers representing the idea than any sort of projection ... your "flat spot" may for instance last years. This is why as you progress past a certain point monitoring goes up in frequency (to catch changes which may occur).

https://pubmed.ncbi.nlm.nih.gov/22942293/
Population: Over a 14 year span we performed three repeated echocardiographic examinations (1994, 2001 and 2008) of a random sample of initially 3273 participants. Data from the only hospital serving this population were included.
Results: There were 164 subjects with AS. Prevalence consistently increased with age, average values being 0.2% in the 50-59 year cohort, 1.3% in the 60-69 year cohort, 3.9% in the 70-79 year cohort and 9.8% in the 80-89 year cohort. The incidence rate in the study was 4.9‰/year. The mean annual increase in mean transvalvular pressure gradient was 3.2 mm Hg. The increase was lower in mild AS than in more severe disease, disclosing a non-linear development of the gradient, but with large individual variations. Mortality was not significantly increased in the asymptomatic AS-group (HR = 1.28), nor in those who received aortic valve replacement (n = 34, HR = 0.93), compared with the general population.
Conclusion: This is the first study to document the incidence and prognosis of AS in a general population with surgery as a treatment option. It reveals an accelerated progression of the aortic mean gradient as the disease advances. The prognosis of AS seems to be comparable with the normal population in the asymptomatic stage and after successful surgery, indicating that the follow-up and timing of surgery has been adequate for this patient group.


From 2021 and well worth the read for why you may want to choose sooner than wait for 27 scans to all unanimously say "severe" (and discount all the ones saying you're borderline)

https://www.sciencedirect.com/science/article/pii/S1936878X21000851
Using multiple transthoracic echocardiograms performed per patient, we were able to detect, for the first time, a component of nonlinear acceleration in both BAV and TAV 2 to 4 years before patients reached severe or very severe AS

this next one is ten years old when apparently this wasn't widely known:

https://www.jacc.org/doi/10.1016/S0735-1097(12)62013-0
The rate of progression of aortic stenosis is not linear in patients requiring AVR


HTH

PS: to the Admin, I'd reckon that this emoticon deserves thought for inclusion, although I suspect its a "thorny question"
🫂

I'd be tending to use it more than just "like" or :mad:
 
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