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How you end up with multiple ablations and still have afib

Posted by Carey 
How you end up with multiple ablations and still have afib
September 29, 2017 10:16PM
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.

Quote
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.
Re: How you end up with multiple ablations and still have afib
September 30, 2017 01:37AM
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.
Re: How you end up with multiple ablations and still have afib
September 30, 2017 11:00AM
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
Re: How you end up with multiple ablations and still have afib
September 30, 2017 11:51AM
"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 12:10PM by Fibrillator.
Re: How you end up with multiple ablations and still have afib
September 30, 2017 07:26PM
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.
Re: How you end up with multiple ablations and still have afib
September 30, 2017 10:01PM
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.
Re: How you end up with multiple ablations and still have afib
October 04, 2017 12:40PM
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.
Re: How you end up with multiple ablations and still have afib
October 04, 2017 08:09PM
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 02:50AM by Shannon.
Re: How you end up with multiple ablations and still have afib
October 05, 2017 03:28PM
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
Re: How you end up with multiple ablations and still have afib
October 06, 2017 08:23AM
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 oil 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
Re: How you end up with multiple ablations and still have afib
October 06, 2017 09:30PM
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.
Re: How you end up with multiple ablations and still have afib
October 30, 2017 06:30PM
Great comments. Spot on.
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