How you end up with multiple ablations and still have afib

I was asked the question below in another thread, but I felt that if I answered there it would be out of place and few would see it. I think this is a story anyone considering an ablation, and especially anyone considering another ablation, needs to hear.

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Anti-Fib
Carey: I would be interested in the 6 Ablation story, if you haven't posted before on it. It has been a frequent topic here, of trying to get Ablations done successfully, and avoid the scenario of multiple unsuccessful ones. I am thinking that major unresolved underlying issues contribute to this. Also specifically, if you have had any reduction in Atrial contractibility as a result of all of these Ablations.

I experienced my first afib episode in 2002. I was an EMT at the time and knew what it was, so I wasn't happy about it but I wasn't afraid of it either. Those episodes continued for the next 6 years occurring once or twice per year and lasting about 6 hours, so I just ignored them. They weren't worth doing anything about, IMO.

But then in 2008 they started to become more frequent and longer lasting. The trend toward persistent afib was pretty obvious so in 2010 I got an event monitor from my PCP and got a formal diagnosis. I had no interest in a life of persistent afib and beta blockers, so I asked for a referral to an EP. He referred me to an EP at the Univ. of Connecticut Health Center, which is affiliated with their medical school and has a good reputation. The EP came with good training, good credentials and a good reputation.

In September 2010 I underwent my first ablation. Five days later I found myself in atrial flutter and had to be cardioverted out of it after it persisted for 2 days. I was then put on flecainide and metoprolol to prevent it. Two months later he stopped the drugs and bam! Back in flutter again.

In January 2011 I underwent my second ablation for the flutter. That kept me in NSR for the following 9 months, but then back came the afib and flutter again, and along with it back came the drugs. (Did I mention that I find beta blockers pretty much as awful as afib?)

So for the next 3 years we played with drugs with varying degrees of success until in early 2014 I agreed to try one more ablation. He was "confident" of success. Well, he shouldn't have been. Within two months afib and flutter were back again. Ablation #3 was a total failure.

At that point I knew I needed to step up my game. I did lots and lots of homework. FIRM was the big deal at the time and looked very promising, so I sought out someone using the Topera mapping system and doing FIRM ablations. I found him at Yale University, and in Dec 2014 underwent ablation #4 with him.

Now, here's the first very important part of this story. The EP at Yale found that I was completely reconnected. More than that, he said he couldn't find any evidence whatsoever that I'd undergone a previous ablation. There was no isolation at all around my pulmonary veins. How the hell is that possible after three ablations, you might ask. If so, you're asking exactly the right question, and I'll address it below. Long story short, he did a complete repeat of the PVI, plus a flutter line on the right, and ablated some rotors (which we now know is probably a useless thing to do).

Initially this procedure seemed successful, or until Feb 2015, that is. Coincidentally, at my first follow-up appointment with him I went into flutter again and this time at a rate of 250 bpm. Nothing would slow it down, not even 200 mg of metoprolol, so once again I was cardioverted out of it.

Over the following months the flutter episodes became increasingly frequent. And trust me, when your heart is cranking along at 230-250 for hours at a time, you can only tolerate that for only so long. So I ended up becoming a frequent flyer at the local ER. I lost count of how many times I was cardioverted in the spring and summer of 2015 but it's somewhere in the neighborhood of 15-20 times.

So ablation #5 was scheduled to deal with the flutter. The EP couldn't provoke the flutter in the lab, so he had to make an educated guess and do yet another flutter line. Unfortunately, he didn't go to the left side, and the result was the flutter was back 3 weeks later. I just failed my 5th ablation.

And then I happened across some articles here about potassium. I didn't expect much but I bought some low-sodium V8 juice and one morning when an episode began I guzzled down an entire can. Lo and behold, the episode terminated on its own an hour later. That was a first. It had never terminated on its own before, so I tried the V8 again the next time and sure enough, it worked again! So began two years of learning to control my flutter with potassium. I'll spare you the details but I eventually had the flutter completely under control. I was on no antiarrhythmic drugs, no beta blockers, and I had the episodes controlled well enough that I didn't even need an anticoagulant.

Until January 2017, that is, when afib returned yet again. And every time the afib kicked in, it would trigger that 250 bpm flutter. Although potassium helps with afib, I couldn't control it with potassium like I could flutter. Between January and August of this year I was on sotalol and Tikosyn to control it. I can't tolerate the side effects of sotalol, and Tikosyn wasn't much better. Both of them gave me profound bradycardia and capped my heart rate severely.

What to do? I investigated a Maze procedure, but guess what its big limitation is? Yes, flutter. Flutter is a common side effect of the procedure and that was already my number one problem, so it didn't look like a viable solution. What else is there? Well, there's an AV node ablation, but that's the nuclear option and there are no options available after you go down that road (and there's not even a guarantee it will eliminate your symptoms).

At this point I'd heard plenty about this Dr. Natale guy in Austin. People raved about him. I didn't doubt he was good, but I'm reluctant to follow fan clubs and it seemed like he was gaining sort of a cult status, which turns me off. However, thanks to a few people on another forum, and most importantly Shannon from this site, I was convinced that he really could help me. So I booked an appointment with him and a little over a month ago I underwent ablation #6 with him in Austin.

It was 2 hours and 20 minutes, which was my shortest ablation ever. He closed a small reconnection around my PVs, and isolated my left atrial appendage (LAA), which stopped the 250 bpm flutter. Plus he ablated another flutter circuit on the right.

That was August 23. Since then, I have not experienced so much as a single PAC. Absolutely nothing but NSR. He had me on Multaq for two months during the blanking period, but I stopped it early over a week ago and there's still nothing but steady NSR. I know I'm only a month post-procedure so I can't call this success yet, but folks, I've done 5 ablations before this and never, ever have I experienced this total lack of ectopy. There are always PACs and brief runs of afib and/or flutter following an ablation -- but not this time. This ablation is very, very different. I can feel it. I hate to jinx myself by saying this, but I think he hit a home run, and he did it by ablating non-PV sources of afib because he has the training and experience to do so, unlike most EPs.

If you read nothing else, read this. Here are the important points to take away from this:

• My first EP did 3 ablations and yet the second EP found no evidence he had done anything. That is unfortunately common. I think he was a competent, well trained clinical EP, but he was not a good ablationist. He knew only how to do standard PVI procedures and he was too afraid of causing adverse side effects to use sufficient power and burn time to make durable ablation lesions. This is unfortunately common among EPs who do a dozen or so procedures per year. They simply do not have the training and experience to do durable ablations. So if you're a simple case and a PVI will cure you then great! Your local EP can probably fix you right up. But if you're not a simple case then you need to not let your local guy do more than two ablations. The need for a third ablation is a sign you're a complex case and beyond your EP's abilities. Do not let him do ablation #3. You need someone more experienced.

• Although my second EP was more competent and did a (mostly) effective PVI, if I had let him do ablation #6 it would have ended in failure again. It would have failed because he doesn't have the training and experience to isolate the LAA, and that's where my 250 bpm flutter-from-hell was coming from. So allowing local guy #2 to try again would have ended in failure, and I would be concluding that an AV node ablation was my only remaining option.

• Why use the local guy at all? Why not find someone like Natale from the get-go and just use them? Excellent question and my answer to that is I sure wish I'd done that. I think I would most likely be on my first, or second ablation at most, if I had done that in 2010. The cost of travel? Oh please. I've spent 10s of thousands of dollars on ablations, meds, cardioversions, and everything else these last 7 years. A trip to anywhere in the world would be cheap in comparison.

So to anyone reading this considering an ablation, and especially anyone considering a repeat ablation -- stop. I'm sure your EP is perfectly competent and you feel secure with them, but how many ablations have they done? Dozens? Hundreds? If that's the answer, that's not enough. The answer needs to be thousands. Ablations are a delicate balance of art and science and there simply is no substitute for extensive experience. Don't do what I did. Get yourself to a highly experienced EP who lives, eats and breathes ablations.

Thanks for the above info. Excellent and I learned a lot just reading it. And I'm so happy for you! Let's hope this last ablation works for you.

Carey - Thanks for taking the time to share your ablation history. So pleased that you were able to make the Natale connection and are enjoying the predictable success and I am very empathetic for your long ordeal. Life should be much brighter and more peaceful for you now.

Be well,
Jackie

"The need for a third ablation is a sign you're a complex case and beyond your EP's abilities. Do not let him do ablation #3. You need someone more experienced."

Exactly! Unfortunately my local EP also affiliated with medical school and "top" program did not advise me I had a unique heart, persistent left super vena cava until after my 2nd. It appears they discovered during the 2nd ablation (WOW!). Furthermore if asked he is sure there is nothing Natale can do he can't. Knowing what I know now that brings about severe laughter and tears all at once if I think too hard about it. I still made the mistake of giving him a 3rd attempt.


"Why use the local guy at all? Why not find someone like Natale from the get-go and just use them? Excellent question and my answer to that is I sure wish I'd done that. I think I would most likely be on my first, or second ablation at most, if I had done that in 2010. The cost of travel? Oh please. I've spent 10s of thousands of dollars on ablations, meds, cardioversions, and everything else these last 7 years. A trip to anywhere in the world would be cheap in comparison."

Again, AMEN! I am only 1 week out from my Natale visit. I consider my first three before him a waste of three years of my life, money and morale. I won't draw any conclusions yet but all signs are looking good and at a minimum if I need another I will be done.

I too was skeptical, who finds a doctor on the net? And just who is this Shannon guy and countless other thoughts went through my brain, but one week out I have not had hope like this in 3 years. I only wish I had done this 3 years ago, if I can get one person to make that decision now, I'd be happy and I now know why Shannon is so passionate. Not many people in the end can say they selflessly changed someones life for the better, he can!

While our cases are different like every Afib case, the story is so very similar. I truly hope someone benefits and does not have to learn the hard way we and too many others have.



Edited 1 time(s). Last edit at 09/30/2017 04:10PM by Fibrillator.

Well said everyone.

As someone who endured an 8.5 hr marathon FIRM ablation that introduced flutter to my afib, I so hope EP’s that believe in this hogwash “science” will see the light and seek out the techniques of Natale and his colleagues of similar talent. I’m believe I’m lucky to be alive after ablation #1. After #2 with Dr. Natale I have my life back. If I should need a touch up at some point in time, it will be in his hands.

A friend of a friend presented with high rate V tach in July. They thought there might be some vfib so put a shocker vest on him. 3 local EP's said he'd need an ICD plus meds. I put him in touch with Shannon, & Shannon with Natale. He got an ablation in very short order - a couple of weeks. He could not believe it when Natale said he'd likely not need an ICD (implantable defibrillator). He called me a month after the ablation to thank me for making the connection. He was feeling wonderful and riding his bike to work. He still could not believe what Natale had told him. Natale referred him to a specific local EP for a follow up. She told him that Natale likely fixed him and he probably would not need an ICD.

I told him to trust Natale. I said, he can do things the other guys can't. He is finally beginning to trust what Natale tells him.

Another friend was in persistent afib. Sent her to Natale in San Fran via Shannon. Natale gave her a three step setup:

1) a prescription for Multaq for several months to see if she'd convert,
2) if that didn't work cardiovert and see how long that would last
3) ablate

She called me a week after she started the Multaq. She'd converted was so excited. An excellent start.

Many thanks for this post Carey - really an invaluable perspective on the decisions we all face.

For me it was hard to grasp the range of expertise among EPs and the level of art still involved in the procedure.

Many thanks Carey for sharing your cogent and insightful AFIB journey summary!

It’s certainly been quite a ride and it’s great to see you already now at the end of the line ... or at the very least just one short hop away from this challenging experience of life sliding fully into your rear view mirror! As you sense already, you could very well be done with this mess once and for all as we speak and it is such a relief to have made it into the hands of a true maestro in addressing the most difficult kind of atrial arrhythmia cases as I have had the profound pleasure to witness over and over now so very many times.

And with so very many manifestations of what seemed previously intractable cases until they met their match at the hands and mind of a true expert in this exciting field who truly knows how to track down and subdue all the various elephants in the room, beyond PVIs, that so relatively few EPs have yet realized are such a key to consistent durable success. Although gratefully more eyes are being opened and more smart EPs are making real progress in following the lead of Dr Natale and a relative few other trail blazers in pointing the way forward.

And many thanks too to the rest of my friends replying here too on this important thread ... Jackie, Cindy, Fibrillator from Chi--town, Andy and Clay from Indiana and of course George ... and so many others of you who help make this little oasis in the online AFIB universe such a special resource.

Be well All!
Shannon



Edited 1 time(s). Last edit at 10/05/2017 06:50AM by Shannon.

Hi Carey,

An interesting report.
A friend of mine recently told me he was going to get an ablation for his afib. I told him I wanted to talk with him before he did do it, so a couple of days later he called me. I tried to explain to him he needed to do a little research before letting the particular EP he had in mind do the ablation. I recommended he see Dr Marcus Wharton at MUSC in Charleston because of his long standing experience (he is right up there with Natalie), and the fact he is close to Asheville. A couple of weeks later my friend told he was going to have his ablation done here in Asheville-"after all he has done about 400 of them", he said. All I said was, Good Luck", and I meant it.

It's not about fan clubs, or cults. If it wasn't for this forum, I never would have heard of Natalie. I did my own checking about Natalie after reading other people's stories about this EP and realized no one was in a category with him-at the time-except a couple of EP's in France(where Natalie studied). When I saw him, he had done over 4000 ablations, sometimes doing 3-4 in a day. My cardiologist, who cardioverted me over 8 times) here in Asheville told me Natalie couldn't do anything more for me than his professor could at the Univ of Alabama(that's another story), but so glad he didn't do my ablation because I know he would have messed up.

Anyway, glad you finally saw the light, and went to the right man, and let go of the fan,cult thoughts. I believe you will be fine from now on, and NOT have to worry about ANY triggers. Have a good life now. I'm sure you will.

Best,
Jim

Good to hear from you Jim!

And I, too, wish your friend 'Gooood Luck' is right!! Especially with being referred to ... and apparently accepting ... an ablationist who has only 400 ablations under his or her belt!

Such 'seat of the pants' risky decisions made like that every day all over the world is why we never have to worry about how all the young EPs everywhere will ever get enough cases to learn from if we send every one too only the most elite EPs such as Dr Natale,

There is never of shortage of woefully misinformed referring Cardio's, though most all are very well intentioned, and there is always a surprising horde of afibber's willing to entrust their one heart's care to the first name that passes through their ear canals as long as someone in a white coat utters the name that is comfortably close by their neighborhood as well. And even without making the slightest effort at vetting the EP they are being referred too!

AFIB ablation is one of the most skill and experience-dependent procedures in all of medicine and yet it is still only the relatively rare lucky one's, like most all of us, who have either stumbled across a well informed forum such as ours along with several others out there who are sharing the message to be discriminating on who one chooses to guide their own expert ablation process.

Carey's story, and that of so many of us here, only underscores just how discriminating one should be to stack the odds high in their favor for real long term success with the least amount of total work being required before they can retire AFIB from their own list of personal descriptors.

And just a minor adjustment about Dr Natale's training, He has long been colleagues with the team from Bordeaux, but to my knowledge never did any of his training there. Dr Natale did much of his core EP training in the US and Canada as well as initially in Italy where he is from.

If your friend is not so lucky with his index ablation done by a relative greenhorn in Asheville, then hopefully you will find him more receptive to your kind and wise advice the next time around!

Take care,
Shannon



Edited 1 time(s). Last edit at 07/29/2022 07:09PM by Shannon.

Sage wisdom, and all of which I wish I had read prior to my 1st (and so far successful) ablation two years ago. Mine was done at Duke University by Dr. Kevin Thomas. At the time he told me he'd done about 600 cases. I didn't know enough to ask if they were all left-atrial complex arrhythmia cases or rather just ablations in total. To be honest, I was just chomping at the bit to get rid of this beast that I was willing to do anything. That being said, I'm cautiously optimistic that what was probably an anatomical-only PVI will continue to be all I ever need with regard to AF. Duke is not a bad center by any measure, and the locality of it was too hard to pass up.

Great comments. Spot on.

Glad to hear all is going so well, Carey. You deserve it.

/LarryG

WOW. I could have had a V8 !

[www.youtube.com]

I was interested reading this topic. Even if one uses the best EP, there is a statistical risk that one cannot be cured, even with their impressive success rate…or at least a long remission from AF. There is someone who falls into the minimum unsuccessful group. The trick is to get the best and hope you are lucky. I know he tried his best and was willing to perform as many more ablations as it took until I was stable with drugs. But how many ablation is too many? One only has a limited amount of cardiac tissue.

It’s a tightrope. I wasn’t lucky and it’s nobody’s fault but karma/bad luck/or a black cloud of having three unsuccessful afib ablations. I learned to make lemonade of life’s hiccups. There is no advantage otherwise.

Eventually the drugs stop working in my case and I’m sure for others flecainide or other drugs eventually stop helping those afibbers as well. I was hospitalized practically most of November—12 admissions, each for days, on drips, boluses and pills until nothing worked and I had ablation #4–an AV ablation.

I finally got some of my strength back. I’m moving abroad and have been working packing from 6-7am to up to 2am daily without tachycardia under the gun because the movers will be here soon. I’m taking a break to type. It’s been a long morning. Tonight two strong guys are coming to lift boxes off closets. Even if my insane working/lifting/packing causes AF, I am ok but dizzy since my AV ablation—but knock on wood I’m not currently a frequent flyer at the hospital with tachycardia.

Life resumes. I’m hopeful for a new start.

Best of luck for those getting ablations. I wish you the best.

Susan, you sure have had a lot of challenges along your journey. Sounds like you've stayed strong through it all. I'm impressed you are able to do the moving. Great to hear you've stayed out of the hospital. I hope it all goes well for you with your move. Take care of yourself along the way.

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Amara
I'm impressed you are able to do the moving. Great to hear you've stayed out of the hospital. I hope it all goes well for you with your move. Take care of yourself along the way.

I hired two strong guys tonight. They conked out after 1 hour 40 minutes so I lended a hand and helped with the closets being emptied. I smiled because they were so young with no afib and I, a decrepit old bat to many ER doctors, was faster. :-). I think this last EP did a good job.

Funny

Damndest thing. I'm watching football this year and seeing these incredible running backs that won't take no for an answer and won't stay down after being hit. Attributes like courage, strength and fortitude come to mind and then I recall Susan hauling around tons of river rocks last year and I think, if only the Chiefs could sign her to help # 10 Pacheco.

[www.youtube.com]

Thank you Carey for sharing your story. You are such a generous person to support us all on this forum. I am in awe of your perseverance through such a tough journey and so grateful you went to Natale for hopefully relief from flutter and afib! We all are pretty amazing as we negotiate the maze of doctors, drugs, cardioversions, etc. I will again put in a good word for Tristan Bahnson at Duke who successfully ablated my husband's afib and flutter more than 15 years ago and now looks like I am doing well after my August 2022 ablation. He has more than 2500 afib ablations under his belt and is the head of ablation training at Duke, if folks are nearby.

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susan.d
I hired two strong guys tonight. They conked out after 1 hour 40 minutes so I lended a hand and helped with the closets being emptied. I smiled because they were so young with no afib and I, a decrepit old bat to many ER doctors, was faster. :-). I think this last EP did a good job.

What an excellent report! Hope your move goes smoothly!!

Thanks George! Good ablation so far. He did a good job. I was extremely reluctant to get a av ablation but it has given me a better life so far. The worker guy is not here yet so I’m hauling wood myself into the house from the garage to jump start the job. But I do have my limits and am sitting down to catch my breath.

Yes Pavan, I did haul 4 tons of river rocks. I wore out the wheels of my gorilla cart. Probably the same to a degree of wear to my heart. I have 4.5 feet of dry creek left to do.

I wish everyone well. Especially Susan who has endured too much and still managed to participate and to maintain her equanimity.

The strength of this forum, and of the apneaboard forum where I also flourish, lies in commiseration. We share, and we work hard at it. It's a labor of love for those who spend their time making sure it runs smoothly. So, Carey and Shannon, thanks so much for all you do toward our various ends and needs.

Thank you Gloaming! Thanks also to Carey and Shannon for your dedication and generosity in helping us get through rough patches.

It can be a very difficult beast to contain.
I’ve had 5 ablations, the last 4 done by Dr. Natale.
In a nutshell, I’d say the first one (done at the world famous Cedars Sinai in LA) was a complete waste of time. It was a cryo index ablation, it accomplished nothing and had a zero percent chance of success.
My first Natale one was very long, a lot of burning.
My second was a fair amount more.
My third was a very short (a few minutes of burn time) touchup.
My fourth was for a Watchman and small touchup.
During the 5 years, I had times of NSR, some fairly long stretches, like a year. I believe afib didn’t ever return after my second Natale ablation, but I’d have some episodes of PACs and/or flutter and high heart rate.
My watchman and touchup was a year ago, been solid NSR since.
Thank you Dr. Natale. In addition to being a wonderful human, I believe he is one of the very few Drs in the world, maybe the only, that could successfully get me in NSR. I am very grateful.

My aunt coincidentally (although probably not coincidence since we are genetically related) also has a tough case, after mine. She was going to go to a no name small volume ablationist. Natale wasn’t covered by her insurance and she didn’t want the hassle.
It took all I had to convince her otherwise.
She ended up having 2 ablations done by Dr. Natale, along with a Watchman and touchup, and she’s been NSR for 2 years now.
She of course is also very grateful to have met Dr Natale and benefitted from his rare skills.



Edited 6 time(s). Last edit at 02/20/2023 10:12PM by Mac.

And we are also very grateful for Shannon, who is another amazing person who has touched so many lives, and helped so many people in profound ways.

Im not quite in Carey s league but similar. PVI in Charlotte 2012. Real good til
2020. Flutter! Failed ablation march 2021 here. Thanks to Shannon guiding me to Austin. Natale LAA etc Aug 2021. Feb 2022 Natale Watchmam. 18 months now of no hospitals had one episode following covid jan 2022 but it was afib 2 hrs. Scotch gave me a 20 min something last sept. Im 69. Im in the Natale Fan Club lol

I’ve had three ablations by Dr Natale.
First ablation for afib was in 2013.
In 2016 I had Takotsubo cardiomyopathy.
I was doing so well in 2020 that TCA said I could stop Eliquis.
A few days later there was a small stroke to my cerebellum affecting my balance.
Dr. Natale immediately put me back on Eliquis 5 mg twice a day.
This was followed by a Watchman Flex and ablation #2 in November, 2020.

Ablation #3 was last month. I thought Dr. Natale had already ablated everything I’ve got but he found more. He said this ablation was different than an afib ablation. I went into the ablation with SVT and Flutter which was incessant. He ablated the left and right atrial septums, the SVC, and my aorta. Dr. Natale said that sometimes fixing Afib resulted in uncovering another underlying aarhythmia. There are places which could still be ablated but he said that it could get risky. Hopefully we won’t go there! Now six weeks out, my heart is purring along in normal sinus rhythm on my Apple Watch! Yeahh!
I appreciate the the education about Afib which comes from this web site as well as those who have contributed with their own journey.
Betty

Carey:

Great story! I'm going to link to it on my blog.

Shannon wrote something similar for my blog a few years ago. He wrote about the importance of seeing an expert EP for ablations. If anyone is interested, they can read it here:

[www.livingwithatrialfibrillation.com]

Travis

Thanks for sharing your ablation history, Carey. -Very good advice.