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20794198 tn?1534529493

Arrhythmogenic cardiomyopathy ARVD/C

Really concerned about this condition and was hoping someone with some knowledge could give their input.

I've had almost 100 resting ECG's, 3 x ECHO CARDIOGRAMS and 2 x treadmill stress tests all in 6 years. These tests were only requested because one day I felt skipping in my chest when I exercised. All of the tests were supposedly normal, each and every time. The only anomalies were PVC's and PAC's. I woudn't say they have become progressive, but every now and again I do feel them in or after exertion. Looking online for the past 2 years I have familiarized myself with ARVD/C and how it isn't easily detected!

Based on these tests and the great amount I have had, should I be spending all my life worrying about this condition anymore? Their isn't any family history of it, and one set of tests were performed in the St George's inherited cardiac conditions unit in London with Dr papadakis, probably one of the most reputable inherited specialists in the world!
3 Responses
Avatar universal
Arrhythmogenic right ventricular dysplasia/cardiomyopathy (ARVD/C) is a rare familial disorder that may cause ventricular tachycardia and sudden cardiac death in young, apparently healthy individuals. The clinical hallmark of the disease is ventricular arrhythmias, arising predominantly from the right ventricle. It is often difficult to diagnose ARVD/C, as there is no single test that can either establish or exclude ARVD/C. The diagnosis of ARVD/C is based on meeting a set of specific criteria, including global/regional dysfunction/structural abnormalities, tissue characteristics, repolarization and depolarization/conduction abnormalities, arrhythmias, and family history/genetics.

If you suspect ARVD/C, you should share your concerns with your cardiologist. A reasonable initial approach might include a thorough family history as well as a 12-lead ECG, transthoracic echocardiography, ambulatory ECG monitoring, and cardiac MRI. You can discuss with your doctor if you may benefit from ambulatory ECG monitoring and/or cardiac MRI.
Avatar universal
Criteria for diagnosing ARVD/C was initially proposed in 1994, then updated in 2010: This chart compares the old and new: https://www.hopkinsmedicine.org/heart_vascular_institute/clinical_services/centers_excellence/arvd/_pdf/arvd_checklist_comparison.pdf. You can use the column on the right, and check to see how many major and minor criteria you meet.

Definite = 2 major OR 1 major + 2 minor
Borderline = 1 major + 1 minor OR 3 minor
Possible = 1 major OR 2 minor

Based on your post where you stated your family history and tests thus far were unremarkable, aside from the PVCs and PACs, I suspect you barely meet any major or minor criteria. That said, you still might benefit from the ambulatory ECG monitoring and/or cardiac MRI, which can rule out other pathologies even if you do not have ARVD/C.
1 Comments
Thanks for the reply.

Yeah I've been told i don't meet hardly any criteria for it. There was a footballer in 2012 called mosorini. He obviously had prior testing routinely being premier footballer, and italian. He then died after he initial screening was deemed fine and they found if they had performed an MRI they would have been able to see scar tissue that was found at autopsy. That's what worries me. What makes me any different except my ethnicity. Arvc is more common in italy.
Avatar universal
Is there some reason in particular you think you may have ARVD/C? Most patients (and even doctors!) have never even heard of this zebra diagnosis. You could still consider getting the cardiac MRI to rule out other etiologies, such as myocarditis, which is not well seen on echocardiography. I am not familiar with how the health system works in the UK. To alleviate your concerns, I guess you could pay for it out of pocket, but that would probably be a waste of money in my opinion.

In those with healthy hearts, occasional PVCs and PACs are harmless and usually resolve on their own without treatment. Some can be managed through lifestyle changes, such as limiting caffeine, tobacco,  alcohol, and stress. Those who experience arrhythmias on a regular basis may benefit from medications such as beta blockers and/or calcium blockers, and in most severe cases, interventions such as catheter ablation.
1 Comments
Thanks again for the reply! There isn't any reason EXCEPT the fact I tend to feel the majority of PVC or PAC during exercise or adrenaline surges. The only other criterion that adds to my fear is when I feel a short run of PVC or PAC (never been caught so I cannot be sure on the arrhythmia).

I think the fact that 2 premier league footballers have gone on to have cardiac arrests after screening is what really throws me! One was morosini in 2012 and the other was davide astori last year. I think both were Italians and I know its prevalent more there!

I understand things were different 7 years ago with morosini and the current screening knowledge etc, but it's been said that had these guys have had a cardiac MRI then it's extremely likely the damage would of been seen. That's been tested in living disease carrying individuals with the same disease pattern as these guys. Both didnt get that because of the non criteria filling screenings they had.

I could go private yeah, considered it! But the heart disease needs to be read by a specialist in this disease so that I wouldn't be misdiagnosed. The heart has fat tissue in some areas which is normal.
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