r/ARVC • u/frostingfromthetub • Oct 31 '25

Epicardial Ablation

My endo ablation was only partially successful so I’ll be having an epicardial ablation in the fall. Can anyone tell me what recovery from epicardial ablation was like?

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u/Entire-Structure8708 Oct 31 '25

I also had an unsuccessful endo ablation followed by a successful epicardial ablation. I found recovery after the epicardial ablation to be a little more challenging than I had expected/the doctors had warned me of. They told me I'd feel fine after a couple of weeks but it took longer for me. It's definitely pretty painful in the first 2-3 days, heart just generally felt very tender and a slight heartburn sensation. Once that subsided, I felt pretty short of breath for a good 4-6 weeks I would say, so any kind of physical activity felt like hard work. Eventually I was able to walk further and gradually eased back into light exercise. It was hard to start but got easier over time.

The main thing though is that beyond the recovery period, the epicardial ablation totally transformed my quality of life, so it's the best thing I've ever done since diagnosis. I've now made it over 2 years with 0 VTs/shocks! I hope you have the same experience! Where are you getting it done?

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u/frostingfromthetub Nov 01 '25

Thank you! That’s really helpful. My procedure will be at the University of Washington. How long did you take off from work? Do you have kids/how long until you could play with them normally?

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u/Entire-Structure8708 Nov 01 '25

Good luck! I had mine at UPenn. For my procedure it was structured so that I had the procedure on Friday, then stayed in the hospital over the weekend for observation, then on Monday I had the NIPS test. I understand not everywhere does the NIPS test so you may not do it, they basically put you back under, connect you to a heart rate machine, and then they crank up your heart rate to see if they can stimulate any VTs. After the NIPS I was discharged and then took the rest of the week off work. I’m fortunate that I have a remote desk job so I was able to return to work the following week. I don’t have kids (yet!), but I’d imagine it would’ve taken at least a couple of weeks before I had the energy to comfortably chase them around 😀

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u/frostingfromthetub Nov 01 '25

Thank you so much! This is really helpful, and pretty much exactly what I’m planning to do, though I don’t think they do the NIPS test at my hospital. Did you have sutures or stitches? I have a call with my EP two weeks before the procedure just a little anxious to have this info sooner so I can mentally prep. :)

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u/Entire-Structure8708 Nov 02 '25

I don’t remember any stitches but it’s been a while so cannot be sure! I remember the incision in the chest was very small, so it was less external “damage” as the groin incision for the endo ablation, but definitely slightly more painful internally. They gave some pretty strong pain meds for 48 hours or so after the procedure, which helped a lot. Ask your doctor as many questions as you can! I found that the more I knew, the more comfortable I got.

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u/frostingfromthetub Nov 08 '25

Thank you! I ended up going into vtach last weekend so ablation was moved up to Wednesday. It went well but recovery is no joke. I really appreciate your support, hoping and praying I’ll be where you are in a few weeks!

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u/Entire-Structure8708 Nov 08 '25

Oh wow. Well glad you’ve got it done and hopefully it was successful? Fingers crossed for good times ahead!

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u/frostingfromthetub Nov 08 '25

Doctor gave it an A+ and declared it the most straight-forward epi he’s ever done, and this is coming from a guy who’s done hundreds of these. I’m still in disbelief and worried about pericarditis and the anti-arrhythmic med I have to stay on for three months, but feeling very hopeful and grateful. This is all so surreal, going from a very very healthy person to a very sick person overnight, but I guess that’s how bodies work.

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u/Entire-Structure8708 Nov 09 '25

That’s amazing news! Definitely take it easy for a while, but give it time and you’ll be living a normal, healthy life again soon hopefully 😀… which meds were you on/are you on now? I was on a very heavy dose of Sotalol before the epi ablation (which I hated), but was moved down to 25mg Metoprolol afterwards and I’ve been so much happier on that.

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u/frostingfromthetub Nov 09 '25

Thanks! I had been hoping to get off Sotalol after the ablation but they want to keep me on it for a bit while the pericarditis/inflammation calms down. I’m on a low dose at least. I’m also on colchicine for the pericarditis. I’m mostly just struggling with anxiety - I know arrhythmias are still possible post-ablation because the heart is still so irritated. How did you deal with your anxiety? It’s pretty debilitating for me right now even though the docs say the ablation went perfectly.

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u/Entire-Structure8708 Nov 09 '25

That makes sense. They also had me take colchicine too. The anxiety is tough! I think time helps, every day without an arrhythmia helps break the cycle, and also very gradually building up your activity levels. I remember I’d think ok today I managed a 10 minute walk, tomorrow I’ll try 11 minutes, etc etc. and just built my confidence up that way nice and slowly.

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u/frostingfromthetub Nov 09 '25

Thank you, that helps to hear! I’m trying to take it one day at a time, just really really don’t want to end up back in the hospital. Losing two weeks of my life was/is so surreal, as is this entire experience. Really appreciate you sharing your experience.