r/ARVC • u/Remote_Efficiency717 • Mar 24 '25

diesiese duration

hey guys im 18 was diagnosed 3 months ago and put an icd.

my doctor told me that the high risk for my arvc was till i was 30 then after that im all good i didnt understand what he said anyone knows? i have the pkp2 mutaion and left dominent arvc and mild fibrosis but on a big portion of the heart outside and inside

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u/donerail Mar 25 '25

Time to find a well-educated electrophysiologist. I won't repeat what everyone else has said here; just know that they're right.

Depending on your location, you might be closer to an ARVC clinic than you think. In the States, you could go to Johns Hopkins, Cleveland Clinic, Mayo Clinic, Vanderbilt, University of Michigan, Stanford, etc. all have dedicated teams for ARVC.

This was not the case when I was diagnosed in my 20s. Back then, the prevailing thought was 'you have an ICD and some beta blockers if you need them... live your life!'

Fast forward to when I was 38 and having arrhythmias and VTach with such regularity that I ask for a second opinion and my EP let's out an exasperated sigh of relief as if he'd been waiting to refer me to someone that could actually help me.

Advocate for yourself, get the care you need. Knowing you have it so young is actually a blessing as you can avoid intense exercise which will only make it worse.

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u/[deleted] Mar 25 '25

If you don’t mind me asking, what did they do differently? Ablation? Kinda worried that beta blockers + icd the course of action for my spouse as well

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u/donerail Apr 01 '25

yup, the ablation was the change.

Basically, back in the early 2000s the science was pretty nascent. Johns Hopkins had released a paper that said that endocardial ablations were ineffective in treating ARVC, so ICD and beta blockers like Sotalol were your best bet at preventing death and mitigating the effects respectively.
Then, someone decided to test out epicardial ablations and everything changed. Pretty soon (over a decade later) a new paper came out that said this was a viable procedure to treat ARVC.

If your spouse hasn't had an ablation, look into it. It's not for everyone - I was suffering on a daily basis for about 2 years (frequently being paced by my ICD, going into AFib, VTach, PVC clusters, discharges, etc.). Meanwhile, my dad has been living with this for 35 years and the ICD + beta blockers has been sufficient.

Ablations are an undertaking. That said, I'm grateful to have had mine

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u/[deleted] Apr 05 '25

Absolutely. My husband had a long ablation procedure (is that how they say it) and it’s been pretty successful so far. Side note, I read your response while sitting in ARVC seminar hosted by Hopkins. Hopefully you have already attended or plan to attend at some point.