Do you wish you had never done an ablation?

I left my original post below but Ken helped me change it to what I am really asking.. : Has an ablation left you worse off than before the ablation? I can see that there could be little or no improvement from a bad ablation, but has anyone had a negative experience, side effects, more afib, etc?

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original post..

I am still waiting to re-try the initial ablation (first stopped due to phantom blood clot). I have been talking to others in some groups and many many seem to live with it. I have asked that question already here but my other question is.. how many have done an ablation and wish they had just stayed in afib because they came out "worse?" I am not talking about the 3-6 month blanking period post ablation- I'm saying long term. I know that isn't the purpose of this forum and anyone is welcome to PM me if they wish.. I am just curious.



Edited 1 time(s). Last edit at 12/11/2021 02:57PM by bettylou4488.

I absolutely do not wish I'd never had an ablation, I've had six, and I came out waaay worse from the first three. I only wish I'd never done the first three because I chose the wrong EP to do them, I didn't understand the criteria I should have been applying to select him, and I allowed him too many do-overs. Had I gone to the EP who did the 6th, I believe I would have been a one-and-done from the start. If I'd gone to him after my first ablation, I think I would be a two-and-done.

Ablations are all about experience. If you're going to use some local guy at a mid-sized center who does maybe 50 ablations per year, then I would recommend you stick with drugs and avoid ablation.



Edited 1 time(s). Last edit at 12/10/2021 08:49PM by Carey.

Yes.

Thanks Carey- yes I know you are very pro ablation and I do have a very experienced guy. I interviewed 3 EPs and with the help of two cardiologists and one of the EPs made my decision who to go to. (I was using one EP as a third opinion and she does pulsed also but I am not a candidate... she told me to stick with the guy where I have cohesive care.). In any event- I get what you are saying. But I also think that very experienced EPs can have not so great turn outs. I have heard those examples. Just trying to sort it all out.

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Carey
I absolutely do not wish I'd never had an ablation, I've had six, and I came out waaay worse from the first three. I only wish I'd never done the first three because I chose the wrong EP to do them, I didn't understand the criteria I should have been applying to select him, and I allowed him too many do-overs. Had I gone to the EP who did the 6th, I believe I would have been a one-and-done from the start. If I'd gone to him after my first ablation, I think I would be a two-and-done.

Ablations are all about experience. If you're going to use some local guy at a mid-sized center who does maybe 50 ablations per year, then I would recommend you stick with drugs and avoid ablation.

I've had four. I don't regret a single one, even knowing it would not work for me as expected.
I'd go for a fifth if I was sure it would be efficient, but I'm a very difficult case, something that wasn't obvious at all before my first ablation procedure.
My single regret is I didn't know before go that the right EP is rarely the guy next door. Had I known, I'd likely have had just two procedures instead of 4.

Thanks. My greatest concern is more that I will have long lasting issues FROM it... even if it doesn't go as expected- I am OK with that. ie not 100% that it will work out of the shoot (in fact my estimation is well below the regular). I have had appointments with 3 EPs so I do understand what you are saying about getting the right one.

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Pompon
I've had four. I don't regret a single one, even knowing it would not work for me as expected.
I'd go for a fifth if I was sure it would be efficient, but I'm a very difficult case, something that wasn't obvious at all before my first ablation procedure.
My single regret is I didn't know before go that the right EP is rarely the guy next door. Had I known, I'd likely have had just two procedures instead of 4.

Ablation success is mostly dependent on the EP. However, the question may be: Has an ablation left you worse off than before the ablation? I can see that there could be little or no improvement from a bad ablation, but has anyone had a negative experience, side effects, more afib, etc?

I have had one and after four years no recurring sustained AFib or flutter so I would say so far, I am very glad I had it. Also, my EP actually had an ablation himself in med school and changed his focus to EP cardiology. That gave me confidence since he experienced it himself.

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Ken
Ablation success is mostly dependent on the EP. However, the question may be: Has an ablation left you worse off than before the ablation? I can see that there could be little or no improvement from a bad ablation, but has anyone had a negative experience, side effects, more afib, etc?

The answer is yes and you can find numerous examples here on this forum. They range from complications of the procedure that last only days such as pericardial effusions to atrial flutter that required a repeat procedure to control. I'm an example of the latter multiple times.

As for the title of this thread, I've met many people who wish they'd not had an ablation in the short term while dealing with the negative consequences, but in all those instances the problems were eventually resolved or at least greatly reduced in severity. I've never met anyone who regretted it long term.

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bettylou4488
Thanks Carey- yes I know you are very pro ablation

No, I am not "pro ablation." That doesn't even make sense. That's like saying someone is pro bypass surgery. I am pro normal sinus rhythm by whatever means works best for you.

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Ken
Ablation success is mostly dependent on the EP. However, the question may be: Has an ablation left you worse off than before the ablation? I can see that there could be little or no improvement from a bad ablation, but has anyone had a negative experience, side effects, more afib, etc?

Tough question.

* Repeated ablations have lowered my afib burden from 2.9% to 0.65%. Episodes are more frequent (AVG 6/month instead of 2/month), but shorter (AVG 65min; instead of 18h20min). Since afib is potentially dangerous; statistically, I'm better now.

* To try preventing afib, I took meds that proved useless and had bad side effects. Since my last procedure, I'm meds free. Rhythm meds being potentially dangerous; objectively, I'm better now.

* Before ablation, I had no ectopics. Just afib with very bad symptoms. Now, my symptoms while in afib are bearable. Between afib episodes, I may have lots of ectopics. They are harmless; so, medically, I'm better now.

* I've shown some ECG tracings here: my ectopics are a mix of PACs and PVCs, in various shapes, mostly in bi or trigeminal pattern. They are really awful. So, has my quality of life improved now? Subjectively, not very much.

No ! My first 2012 here in Charlotte gave me 9 great yrs. Then atypical flutter arrived. I let same guy have a crack 3/29. Didnt work. To Austin 8/6 nsr since. Two days ago at noon i was Kardia nsr HR 68 BP 117/72. But! Back to Austin soon for a Watchman. Ive in all 3 had zero adverse events. Some peracarditis a few days after 1&2
Like Carey wish id a gone to Natale for no 2. Hindsight is…..

my bad Carey..there was no malice intended

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Carey

Thanks Carey- yes I know you are very pro ablation

No, I am not "pro ablation." That doesn't even make sense. That's like saying someone is pro bypass surgery. I am pro normal sinus rhythm by whatever means works best for you.

Edited 1 time(s). Last edit at 12/11/2021 02:55PM by bettylou4488.

Yes thank you- that is more what I am asking. I think I will cut and paste and edit my original post

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Ken
Ablation success is mostly dependent on the EP. However, the question may be: Has an ablation left you worse off than before the ablation? I can see that there could be little or no improvement from a bad ablation, but has anyone had a negative experience, side effects, more afib, etc?

There is no one who regretted it long term who you have met? just checking I read that right... Because my circle is smaller than yours and I do know those people..

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Carey

Ablation success is mostly dependent on the EP. However, the question may be: Has an ablation left you worse off than before the ablation? I can see that there could be little or no improvement from a bad ablation, but has anyone had a negative experience, side effects, more afib, etc?

The answer is yes and you can find numerous examples here on this forum. They range from complications of the procedure that last only days such as pericardial effusions to atrial flutter that required a repeat procedure to control. I'm an example of the latter multiple times.

As for the title of this thread, I've met many people who wish they'd not had an ablation in the short term while dealing with the negative consequences, but in all those instances the problems were eventually resolved or at least greatly reduced in severity. I've never met anyone who regretted it long term.

Edited 1 time(s). Last edit at 12/11/2021 02:59PM by bettylou4488.

My single ablation gave me my life back after floundering around and steadily getting worse for 2 and a half years trying different meds. But you can't depend on the ablation to stop it forever, without being proactive about your health.

If for some reason I start having issues again, I will try to be first in line for another one. Chances are, eventually I may need one, but hope that Dr. Natale has not retired by then! For now, I am following all of the guidelines presented in Dr. John D Day's book "the Afib Cure", and Dr. Denis Goodman's book Magnificent Magnesium, and so far, so good.

Remember that the longer you stay in Afib, the greater the chance your heart will begin to remodel and want to stay in Afib, and I understand persistent AF is harder to treat. .

My ablation is the best thing that's happened to me since the birth of my last child 35 years ago!

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bettylou4488
There is no one who regretted it long term who you have met? just checking I read that right... Because my circle is smaller than yours and I do know those people..

Yes, you read it right. I guess we need to define "long term." Sure, I know people who came away from ablations worse off than they went in, and I count myself among them. Multiple times, in fact. It took 7 years for me to find relief. If I had given up at any point during those 7 years (and I came close), I'd still be worse off today.

Anyone who came out of an ablation worse off than before and has given up and is just going to live with it is making a second huge mistake. The first huge mistake was most likely the EP they chose. They didn't understand how important the experience of the EP and the volume of the center are. Or, like me, they we misled by impressive academic credentials. But I virtually guarantee if they went to a top EP, whatever is wrong with them can be corrected. I've known some really lost cause cases, but every one of them now have their lives back. In fact, if anyone you know in that boat would like to talk by phone, both Shannon and I would be perfectly happy to do so. We do that all the time. Just shoot me a PM. I'm confident we can steer them in the direction of not being worse off forever.

Susan has been having a hard time of it, i do know of someone else that had an ablation in Texas and had to have a pacemaker. I understand that there are more that have had success than failures but the point is there have been failures. I think each time a person has some medical proceedure there can be some problems that can occur. I had to have a pacemaker because when my heartrate went back into NSR from an episode of AF I would almost black out. Now I am having some valve problems which I understand is due to where some of the pacers wires are placed.

i realize that I probably had not much of a choice, but perhaps if i had an ablation at the time that might have solved my problem, it was very early in my AF career. That was about 20 years ago, I did not have a computer then to do some checking, a person thinks they have a good doctor but I have learned to check every one. i live in Michigan as does BettyLou, i will say if I was to get an ablation and cant get to Texas i would go to Ohio, U of M in Michigan is a teaching hospital and you will not know who is really doing the operation, I don't know if that is where Betty would go but i thought she did say that.



Edited 1 time(s). Last edit at 12/11/2021 07:33PM by Elizabeth.

Unquestionably NO. Two ablations got me four years of good, clean normal sinus rhythm. Yes, sometime this fall things went awry and I'm awaiting scheduling for a third and implantation of a Watchman. I'm just another anecdote in the long list of humans who have suffered the malady. With luck and the skill of a great EP the third will be a permanent home run.

Thanks. I did speak specifically with my EP about who would be doing the procedure.. I do have a 'review' set up at Cleveland. I hear what you are saying which is why I discussed it with my doctor...

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Elizabeth
Susan has been having a hard time of it, i do know of someone else that had an ablation in Texas and had to have a pacemaker. I understand that there are more that have had success than failures but the point is there have been failures. I think each time a person has some medical proceedure there can be some problems that can occur. I had to have a pacemaker because when my heartrate went back into NSR from an episode of AF I would almost black out. Now I am having some valve problems which I understand is due to where some of the pacers wires are placed.

i realize that I probably had not much of a choice, but perhaps if i had an ablation at the time that might have solved my problem, it was very early in my AF career. That was about 20 years ago, I did not have a computer then to do some checking, a person thinks they have a good doctor but I have learned to check every one. i live in Michigan as does BettyLou, i will say if I was to get an ablation and cant get to Texas i would go to Ohio, U of M in Michigan is a teaching hospital and you will not know who is really doing the operation, I don't know if that is where Betty would go but i thought she did say that.

Several things i learned here in 2012 prior to my first ablation: 1) ask the ep who puts the catheters in? 2) what is his accident record 3) and that after the ablation its like playing golf with a 6 stroke handicap. Youve been given an advantage 4) that the risks associated with ablation are less than having your appendix out. All were exactly right. Grasping for 100% safety assurance is impossible. Being in afib or flutter carries risk. Meds have some risk. Its like chess. You have to make a move all moves could turn out great but a 1-2% chance they dont. You find a top notch guy is objective one then you let go and trust

I've had 5. No regrets.
1st lasted close to 10 years.
2nd was a complete failure.
The last 3 were spent pinning down the cause as I am a complicated case.
Each of the last 3 left me in far better shape than the previous.



Edited 1 time(s). Last edit at 12/18/2021 01:43PM by rocketritch.

Rocketritch
I've had 5. No regrets.

Sorry but if I was to get my first ablation and saw your post, that would scare the heck out of me.

I have had 2 Ablations. 2014 and 2016. LAA was isolated in 2016. I have been in NSR since 2016. No regrets. I accidentally stumbled on this Forum in 2013 and it was a Godsend. Dr. Natale did both ablation’s in Austin.
Shannon was such a mentor for me and my wife plus many others on this Forum.

Hello BettyLou... You've probably seen this past post, but in case not, this link briefly describes my AF/ablation history.
[www.afibbers.org]

This coming March, I'll be celebrating my 86th birthday and I'm pleased to report that my heart is still peaceful after the last Natale touch-up ablation in 2015. I have absolutely no regrets about having the ablations but I do emphasize the importance of choosing a well-known and highly highly-experienced EP, as discussed and recommended here in many, many posts.

Best to you,
Jackie

Hi BettyLou

After many years of highly symptomatic paroxysmal AF and 18 months of persistent AF, I had ablation in Bordeaux almost 19 years ago when the procedure was still in its early days. AF recurred after 3 days so they did an immediate touch up.

The EP was Professor Haïssaguerre, the European equivalent of Dr Natale - I paid extra to have him do it himself, and it was well worth it. At that time very few EPs would attempt ablation for someone with long term persistent AF.

Since then nsr for almost 19 years. Gave me my life back. Best decision I ever made, no regrets.

Gill

Hill- almost 19 years! Wow! Congratulations on your success.

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Elizabeth
Rocketritch
I've had 5. No regrets.

Sorry but if I was to get my first ablation and saw your post, that would scare the heck out of me.

I edited it

So bit of background, I developed AF after exercising at age 40, did a lot of reading on forums, and signed up to a trial by prof Sabine Ernst in London to get ablation, I’d had one episode but was determined not to let it progress, and as I was young didn’t want a lifetime of drugs….. there are days now where I do wish I hadn’t had it as since two years post ablation I have daily constant pvcs, these are more debilitating I find than my AF

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Juggsy75
there are days now where I do wish I hadn’t had it as since two years post ablation I have daily constant pvcs, these are more debilitating I find than my AF

The trouble is, there's no way to know if the ablation caused the PVCs. Since an ablation doesn't get anywhere near the ventricles, it's unlikely that it did.

How many do you have each day? If you're experiencing more than 20K per day, they will treat that.

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Carey

there are days now where I do wish I hadn’t had it as since two years post ablation I have daily constant pvcs, these are more debilitating I find than my AF

The trouble is, there's no way to know if the ablation caused the PVCs. Since an ablation doesn't get anywhere near the ventricles, it's unlikely that it did.

How many do you have each day? If you're experiencing more than 20K per day, they will treat that.

My last burden was 2.8% but I get runs of them where they take my breath away, also had a real scare where they said I had NSVT but after the cardiac mri they said all was fine but because I’d pressed button on holter it needed investigation, when I told them I’d not pressed it as I didn’t even know there was a button to press they just dismissed it as artifact….. worst two weeks of my life as original dr who rang was asking if any family had died suddenly and other questions that were worrying

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rocketritch

Rocketritch said
I've had 5. No regrets.

Elizabeth said:
Sorry but if I was to get my first ablation and saw your post, that would scare the heck out of me.

ROcketritch said:
I edited it[/quote

i don't understand your reply. i was quoting Rocketritch about his having 5 ablations, i have never had any. My quote was the one where I said if I saw that he (Rocketritch) had to have 5 ablations, and I was to have a first one that would scare me thinking that I might need 4 more to be out of AF.

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Carey

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Juggsy75
there are days now where I do wish I hadn’t had it as since two years post ablation I have daily constant pvcs, these are more debilitating I find than my AF

The trouble is, there's no way to know if the ablation caused the PVCs. Since an ablation doesn't get anywhere near the ventricles, it's unlikely that it did.

I agree with both arguments.

1) Like Juggsy75, I've now numerous ectopics I never had before ablation. I had afib. Nothing esle. Now, I've still afib (shorter duration and with quieter symptoms), AND I've ectopics. They're armless, but awful. Comparatively, my afib is now more easily bearable than those PVCs in bigeminal pattern.

2) I understand that ablation can't be the cause of PVCs, since catheters don't get in the ventricles. But, as I've written here a couple times, ablation is just like a fence preventing the beast entering the atria. The beast is still alive and can try making troubles somewhere else, using the vagus nerve to travel. This nerve is long. So, the beast can try making harm from the throat down to the guts and disturb anything on its way.

Interesting discussion. I was diagnosed with LAF in late 2016 after having very sporadic episodes (once every two or three years) probably since my late 20s that I didn't understand was afib (they'd last 2-4 hours and convert on their own - I wrote them off as stress). Once finally diagnosed, episodes became more frequent (once or twice a month, always converted on their own). I am 55, fit and not overweight with really no known triggers other than possibly alcohol.

I had an ablation in July 2017 and was afib free until Christmas Eve last week - had a four hour episode that converted on it's own. So, am heading back in to discuss with the EP who did original procedure (Adam Fein with Virginia Heart in Fairfax, VA). I read of Dr. Natale back in 2016. How difficult is it to (1) get in to see him and (2) engage him to do the ablation? If I choose to do another, I am thinking of going there.

I do not regret the decision at all - despite my obvious frustration of having an episode after almost 4 1/2 years, I got 4 1/2 years of nsr. So I'm very prepared to give it another shot if that is what makes most sense.

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kantler
I read of Dr. Natale back in 2016. How difficult is it to (1) get in to see him and (2) engage him to do the ablation? If I choose to do another, I am thinking of going there.

I'm not an ablatee, but have been here since 2004. I've suggested a number of friends in real life go to Natale, with success. I don't know what the current waiting list is, but suggest you call and find out. I know others here have done video consults with him, so that is an option for an initial consult. [tcainstitute.com]

Great post Carey. So reassuring to hear complete stories like this. I got the pericardial effusion recently & had pericardiocentesis right away & have been experiencing more fatigue than I did on initial ablation. I also have had the stabbing chest tightness recur a few times since returning home & not being on the colchicine anymore, but the St. David's nurses are handling it by helping me. And, I will be returning for checkup & further exploration in a few months, so it is good to see these stories. I like the one where the woman spoke of the heart remodeling if we let afib continue too long & then persistent AF would be harder to treat. Sometimes I have wondered if I jumped in too soon with ablation, mainly bec of hearing so many of you & your stories that were soooo bad, unlike me. I just did not handle meds well, already have thyroid problems & fear of stroke/dementia, so I jumped in for ablation within 1-1/2 yr of my diagnosis. But reading these posts helps me to know I have been on the right path. I was doing a search engine for the words "pericardial and/or effusion" & that is how I ran across this old post.

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Carey

There is no one who regretted it long term who you have met? just checking I read that right... Because my circle is smaller than yours and I do know those people..

Yes, you read it right. I guess we need to define "long term." Sure, I know people who came away from ablations worse off than they went in, and I count myself among them. Multiple times, in fact. It took 7 years for me to find relief. If I had given up at any point during those 7 years (and I came close), I'd still be worse off today.

Anyone who came out of an ablation worse off than before and has given up and is just going to live with it is making a second huge mistake. The first huge mistake was most likely the EP they chose. They didn't understand how important the experience of the EP and the volume of the center are. Or, like me, they we misled by impressive academic credentials. But I virtually guarantee if they went to a top EP, whatever is wrong with them can be corrected. I've known some really lost cause cases, but every one of them now have their lives back. In fact, if anyone you know in that boat would like to talk by phone, both Shannon and I would be perfectly happy to do so. We do that all the time. Just shoot me a PM. I'm confident we can steer them in the direction of not being worse off forever.