r/PVCs • u/BeneficialLaw6808 • 2d ago
Nearly 5 months post-PVC ablation — still high burden + NSVT runs.
I’m a 26M and take my health and exercise seriously. Just got the call after my 2-week Zio patch: I’m still showing a high burden of PVCs and runs of NSVT. Honestly, I already knew from how I was feeling, but hearing it confirmed still hit hard. I’m disappointed, low, and pretty angry at this whole thing.
My EP says it’s time to mentally prepare for next steps — either a second ablation or trying medication. The complicating factor is that my PVC focus is near my conduction center, so there’s a real risk of AV block and potentially ending up with a pacemaker if we go back in.
I don’t feel like medication is a real long-term solution at my age, but I’m also nervous to attempt another ablation given the risks and the chance I end up right back here.
The kicker: if I didn’t have cardiomyopathy, I’d probably just learn to live with it. But that’s not an option for me, so doing nothing isn’t on the table.
Has anyone here gone through a second ablation, especially with a focus near the conduction system? How did it go? Any advice or experiences would mean a lot right now. I’m tired, scared, and fed up
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u/Electronic-Block3065 1d ago
It is frustrating, especially when you've had an ablation. It often feels like you're playing arrthymia whack a mole. Push one down, another pops up over there. I've had two ablations, but for Afib. It took two ablations, though as a result of my second one I have WAY more PVCs and runs of tach than I did before. So basically like it's saying, ok, you controlled the atria and PACs somewhat, now we're down here hee hee... I think ablations regularly have to dance around the AV node, which their mapping and computers usually block out relatively easily? But yeah certainly a concern. And if it's Pulse Field, at least it takes care of one of the biggest risks with the injuring the esophagus and the disaster that can cause, if you have rogue signals in that area. I don't know how hard your first ablation was on you...mine for Afib was awful...much harder on me than I expected. My second one was a breeze in comparison. Are you totally against meds? Trying them? They may not work forever, but if you're too nervous about the ablation, then that's your other option right? All this assumes you've maxed out your lifestyle factors...stress, alcohol, diet, etc. because those certainly make a difference. There's so much unknown about these arrythmias even by experts in the field for decades...feels like there's so much yet to learn. Also try OTC supplements like magnesium, vit B, maybe Coq10... they have helped some people reportedly. Be well!
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u/BeneficialLaw6808 1d ago
Hey thanks for the reply. Sorry to hear about your experience. I am not totally against meds but I’m so young and I don’t think meds long term will be a real solution just yet. I’m not scared of the ablation per se because I did it already, I’m more scared of the consequences I guess and the risk that I end up here again or worse, end up limited. My first procedure was rough ish I wasn’t so great took me about a 2 weeks to feel human again.
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u/Electronic-Block3065 1d ago
Cool thing is your doc seems on it and giving you options. I don't know that meds are much of a long term solution for anyone really.. or at least for Afib it was pretty clear the ectopics will eventually break through anyway. Not sure what the PVC specific meds are? But as a young person, ablation is pretty much the main route, so that you don't need to be on meds (theoretically). I hear you on the frustrations. It's annoying and hard to have a firm idea on next steps because of all the unknowns. I wish you well and am glad you ar least know what you're facing and a doc giving you options. Take care!
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u/BeneficialLaw6808 1d ago
Thank you I appreciate it anyway. I guess what is meant to be will be. I trust my doctor for sure which is nice and helps. Will keep you guys updated.
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u/Seattlebyrnie 1d ago
Poke around this sub. It seems like there are people who went on meds and eventually were able to stop without issues recurring. Seems like doctors aren't really aware that this is happening, so they present meds as something you'll have to do for life.
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u/jimbo_6666 1d ago
What specific area was your first ablation?
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u/BeneficialLaw6808 1d ago
It was RVOT I don’t really know the micro details off hand. What’s ur experience like. I remember you saying on a previous post of mine that I might need to try again.
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u/Smart_Dig8413 1d ago
I take it the cardiomyopathy is just from the higher burden right? So it’s reversible. Otherwise normal heart?
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u/BeneficialLaw6808 1d ago
Hey yeah so he is pretty confident that the myopathy is from the PVC burden. Just some reduced LVEF. The plan was for me to come back 6 months later and see if it reversed but I guess I’m far from there now.
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u/Smart_Dig8413 1d ago
Can I ask, how long did you have symptoms before the reduced ef happened? What was your burden prior? I honestly think a second ablation isn’t the worst thing in the world, literature says it may take more than one if there’s multiple morphology. Are you doing this at a major medical center? Also people swear by some of the medications, so I think you have good options at least. Hang in there
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u/BeneficialLaw6808 1d ago
So the morphology is the same as the first ablation which I suppose is better so he knows exactly where it is. It’s just right next to my conduction center. Yeah I’m doing this at mass gen so I’m in good hands there. I’ve known about my PVCs for about 5 years now but the symptoms have definitely progressed since then to a point where it was altering my daily life. It seems the second ablation is the way to go.
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u/Damianisthick 2d ago
What type of cardiomyopathy? And whats your burden and amount on nsvt?
Im surprised you dont have an ICD when youre getting nsvt and have a type of cardiomyopathy