Difficult choices: another ablation or stay on drug

Hello all
I am having a difficult time trying to decide on which path to take. My last ablation (#4 done in Feb 2020) finally gave out a month ago, a total bummer. I was asked to take propafenone which is actually working but with bothersome side effects. I have tried so many other meds in the past and none was suitable so the only other drug left is amiodarone which I would prefer to avoid for now. I took it for many years before so I know what it's like.
My EP is highly skilled in a major hospital in San Francisco and has suggested either lowering the dose or try for another ablation. He had said a few weeks ago that there wasn't any other places left to ablate but seems to have changed his mind. He has left it entirely up to me to decide. He is also very fond of the AV node/pacemaker option as well - ugh!
Would appreciate some thoughts about my conundrum.
Mary

Hello Mary
So your last ablation lasted 4 years which is a blessing to be in NSR for the 4 years. I can only speak to going back on amiodarone as I have been on it in the past and found it to be the most awful med Ive been on. The side effects were truly terrible, I believed the med was worse than the AFib. I have a pacemaker and at the last check up it was pacing 82% of the time so for me to go to 100% of the time would not be a big deal. Without my pacemaker there is a good chance I would not be here enjoying my life.
I go for my first ablation this spring so I am not qualified to speak about your 4 ablations.

I hope you find resolution and peace
Cal

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NoTrigger
My EP is highly skilled in a major hospital in San Francisco and has suggested either lowering the dose or try for another ablation. He had said a few weeks ago that there wasn't any other places left to ablate but seems to have changed his mind. He has left it entirely up to me to decide. He is also very fond of the AV node/pacemaker option as well - ugh!
Would appreciate some thoughts about my conundrum.
Mary

Hi Mary, have you read Carey’s pinned post above? Food for thought. [www.afibbers.org]

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NoTrigger
He is also very fond of the AV node/pacemaker option as well - ugh!

Sounds like he may not be too optimistic about how ablation number five will work out? Rather than pace and ablate,
have you looked into a surgical ablation like the Wolf Mini Maze (WMM)? Many have found that it worked after catheter ablations have failed. Another benefit is that the clip the LAA which would allow you to get off of thinners.

Jim

EPs are supposed to be able to map out the heart's electrical system and to look for re-entrant foci, which is what I'm sure we're dealing with here. When ablations time-expire, it means another re-entrant has been established (and proving, despite the denial of a few, that AF is progressive in nature). IF you have an EP wiling to tackle your heart, and indicates that he/she will attempt to locate the foci (or else why bother with an ablation at all), this may buy you another four years, perhaps more. Having had two myself, I would happily go back to my EP when/if my turn comes. It beats drugs, in my view.

I also have experience with Amiodarone. I would rather not, but in my case it got me back into NSR and I didn't need it more than about eight weeks before my Holter test. Which...showed lots of PACs, so Amiodarone was not to blame for my first ablation failing.

Believe me, all of us here are firmly behind you and stand with our hands on your shoulders. We've had multiple ablations, and we share the dismay when our brains tell us that we're back to Square One. I can't make your decision for you, but drugs would always place second, even if I would be grateful for them when an ablation either was simply the wrong thing next or because it fails.

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NoTrigger
My EP is highly skilled in a major hospital in San Francisco and has suggested either lowering the dose or try for another ablation. He had said a few weeks ago that there wasn't any other places left to ablate but seems to have changed his mind. He has left it entirely up to me to decide. He is also very fond of the AV node/pacemaker option as well - ugh!

Your EP may be highly skilled and they may be at a major hospital, but you are beyond their abilities. Saying something like there aren't any more places to ablate, and the fact that they're even talking about an AV node ablation tells me their confidence is very low. Don't let someone who expects failure to do an ablation on you.

Please read the post Daisy linked to. You absolutely should not let that EP do another procedure on you. You can still use them for medical management, but my advice to you would be to book a consultation with Dr. Natale. You're exactly the type of patient he specializes in.

Thanks Jim - I did have both procedures done when I had open heart valve surgery to fix/replace multiple valves 7 years ago. The maze didnt help and of course I have to be on blood thinners due to the mechanical valves.

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NoTrigger
Thanks Jim - I did have both procedures done when I had open heart valve surgery to fix/replace multiple valves 7 years ago. The maze didnt help and of course I have to be on blood thinners due to the mechanical valves.

In that case, couldn't hurt to have another consult with someone like Natale and see if they are more more confident about a 5th, but I'd really question them carefully regarding expectations.

If not, while often called the "last resort", for many Pace and Ablate may be the best resort -- as compared to meds that sometimes make us feel worse than the afib itself. Good luck with whatever you decide.

Jim

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NoTrigger
He had said a few weeks ago that there wasn't any other places left to ablate but seems to have changed his mind.

Ask him if ablated (isolated) the LAA—chances are he didn’t as that is a very tricky area to work with, but also sometimes the source of really stubborn arrhythmias. Natale isolated mine as it was such a source for me, and that was the move that got me back into NSR.

I ended up with an av node ablation. I no longer have >190-250 tachycardia, but this ablation is not a cure all solution. It just keeps one out of the ER with tachycardia and endless ECV (I had 54).

It comes with its own challenges including the risk for ventricular pacing cardiomyopathy. One has to get frequent echos to check and if one is on that path, replace their pacemaker with a 3 lead (2 in ventricles and 1 atrial chambers).

It’s a last resort solution. I don’t think you are there yet. You should see Dr Natale or have a zoom appointment with him and weigh your options before settling for a drastic av node nuke.

Daisy - my LAA was taken care of during the open heart surgery. Less tricky then I would imagine. I am getting a better understanding of my situation and why my EP, skilled as he is, was somewhat reluctant to do another ablation. Since I have had 3 (not counting the Maze) they know exactly what is going on. Unfortunately, each time they induce flutter, it jumps around and doesnt stay long enough to map and ablate. My cardiologist described it as "whack-a-mole"
He did say it was worth a try but the only way to know if there is anything to burn is to go in. For now though I seem to be having an easier time with the side effects and am also reducing the dose to make it even more tolerable. As with anything else, there are no guarantees, even with the famed Dr Natale....Hopefully I can hold off for 6 more years on a low dose and reassess at that point.
Thanks Susan for sharing your experience with the pacemaker. I do agree that I don't need to go there yet. Even with the flutter happening often my heart rate was quite manageable. Propafenone is working great and once I adjust I hope things will calm down.
Thank you all for weighing in.

Mary

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NoTrigger
Daisy - my LAA was taken care of during the open heart surgery. Less tricky then I would imagine. I am getting a better understanding of my situation and why my EP, skilled as he is, was somewhat reluctant to do another ablation. Since I have had 3 (not counting the Maze) they know exactly what is going on. Unfortunately, each time they induce flutter, it jumps around and doesnt stay long enough to map and ablate. My cardiologist described it as "whack-a-mole"
He did say it was worth a try but the only way to know if there is anything to burn is to go in. For now though I seem to be having an easier time with the side effects and am also reducing the dose to make it even more tolerable. As with anything else, there are no guarantees, even with the famed Dr Natale....Hopefully I can hold off for 6 more years on a low dose and reassess at that point.
Thanks Susan for sharing your experience with the pacemaker. I do agree that I don't need to go there yet. Even with the flutter happening often my heart rate was quite manageable. Propafenone is working great and once I adjust I hope things will calm down.
Thank you all for weighing in.
Mary

Thanks for the clarifications. Yes, my ablation report reads like a whack a mole story with flutter turning into Afib and back to flutter on a chase through the heart. Eventually Natale “got it.” Here is something interesting, at least as how I understand it—the clot problem with the LAA can be taken care of through one of the means of occlusion, but the tissue that generates arrhythmias may still be there as it is not inside the LAA but is the tissue around the mouth of the LAA. So EPs will sometimes find that it is necessary to isolate “the LAA” even through there is a Watchman or AtriClip in place.

But, for now, glad that you are doing well with Propafenone.

Daisy - I had no idea there were so many options in dealing with the LAA surgically. I am pretty sure the surgeon removed it completely during the surgery but unclear if the tissue problem still exists. I read through the notes of the ablation and found no references to LAA isolation. Will have to bring it up with the EP next time.