Okay most of time but not hard times. Ablation?

Thank you all so much for this afib forum, hearing other peoples afib stories and tips is a huge help. I’m looking for some opinions on oblation for myself… Here’s the short version of my story (which I see now is still quite long):

I’m a 42 year male, 6’7, 215 lbs. I’ve noticed increasing irregular beats over the course of a decade. Things came to a head a year and a half ago when exercise triggered atrial flutter (diagnosed at hospital). I then had a holter that showed I was spending 35% of my time in afib (mostly slow afib while sleeping) and went on flecainide/diltiazem. I struggled through a period of insomnia and depression and had multiple emergency room visits. I couldn’t exercise as anything over 70 bpm would trigger loads of ectopics. It was a terrible time.

I’ve since made the lifestyle etc. changes recommended here and elsewhere and have improved a lot (better diet, supplements, more exercise, taking on less, better sleep habits, zero alcohol, mindful breathing exercises). I’ve been off meds for four months now. The most recent 72 hour holter showed only 2% PAC burden, no flutter, no afib (admittedly I was on my best behavior). I can now once again exercise at 150 bpm without too many ectopics, on good days.

So most of the time I feel like I have an okay handle on my heart rhythm issues now. The rare times I do go into flutter/afib, I’m able to get out on my own. And the PACs don’t bother me as much as they once did. I know my triggers and am willing to modify my life to deal with these rather than going through a procedure. I read ‘The Afib Cure’ (author admits it’s more remission than cure…) and am totally on board with the idea that even if one gets ablation, afib is just going to come back unless you deal with the triggers (assuming they can be found). And I know the risks of surgery are low, but they are serious risks nonetheless. And the longer I wait for the procedure, the better it could be what with various upcoming advancements.

But a week ago I got strep throat with a high fever. My heart rhythm became poor (though not nearly as bad as that phase 1.5 years ago) and I’m only now gradually getting back to how I was. Getting sick seems to be the main thing that is out of my hands. My wife is a kindergarten teacher and my son is in kindergarten and they both have extraordinary immune systems but I get hammered maybe seven times a year. Each time it takes me a couple weeks to recover my heart rhythm. It sucks to have my heart act up exactly when I need it most. One other time I seem to have issues is on family vacations where I’m out of routine and on the go non stop and don’t sleep as well. Basically, when I’m out of my daily routine and life gets challenging, that’s when my heart becomes my Achilles heel. But I do get back on track usually within a week or two.

I’ve had echo and cardiac MRI and my heart appears structurally normal. They don’t see any evidence for inflammation from mrna vaccines, though I still wonder about that given the acute episode 1.5 years ago. I do have a family history of afib, and being so tall is a risk factor, or so I’ve read. My cardiologist says it’s really how I feel that determines whether I get the ablation and doesn’t seem to think it will affect my lifespan one way or the other. My electrophysiologist says I’m a bit on the early side for getting ablation.

One odd thing I’ll add is that despite being in sinus rhythm most of the time, my heart beats can still feel kind of uncertain. I’ve often wondered if not all regular heartbeats are equal, like there is a bit of electrical disturbance but not enough to trigger a PAC. Could ablation address this? Has anyone noticed that even regular sinus rhythm feels better after ablation?

What I’m mainly wondering though is whether there is anyone else out there in or has been in a similar situation, and what other people might think about ablation in such circumstances. I’ve been on the wait list for ablation (delayed appointment because of improvements I’ve seen on my own) and I’ve been asked to either go forward with the surgery or I’ll be taken off the wait list. And I’m in Canada where, if I’m not on the wait list, it will take another year to get the procedure done. So now is decision time for me to either go ahead with ablation or continue to manage it naturally. For some reason this is a very difficult decision for me to make… I guess it’s because the majority of the time I am just fine, it’s only when life throws a wrench that I struggle. Ideally life would stop throwing wrenches, but I guess that’s not an option.I would greatly appreciate any thoughts/input/opinions…

Hi, and welcome! We are pleased to offer a refuge or a place to vent here. Our hosts are very patient and knowledgeable and will chime in on pretty much every conversation, so you'll see at least one of them pipe up.

I hope you won't mind a correction; it is 'A...blation', not O...blation.

If an ablation ceases all ectopic activity, it us truly wonderful. My first ablation seemed solid, but then it went sideways within about six days. My electrophysiologist (EP for short) talked to me personally a few months later and agreed to try another round of ablation. Thankfully, this one has been perfect, no hiccups in the past 10 weeks. Last time, the Holter assessment showed many PACs, but no AF. Then the AF returned, and even became flutter over the New Year six months ago. Latest Holter shows no ectopic activity at all. So, yes, if you are even moderately symptomatic, with palpitations and unease, then you will find it most refreshing and relieving when and if your ablation is successful and you are free of ectopic beats after about two weeks (during which many people experience some unsettling fibrillation. This is normal, and your release pamphlet should warn you not to panic if you have short runs of AF in the first two to three weeks after an ablation).

I can't make a decision for you about ablation, but I couldn't wait. As soon as I knew I had AF, and then after two years it became more frequent, I began to read much more in depth and learned about RF ablation. I understood immediately that this mechanical fix was many times more preferrable than taking antiarrhythmic drugs and metoprolol for the next six to ten years until I permanently fibrillated. IT MUST BE ACCEPTED THAT ATRIAL FIBRILLATION WILL PROGRESS IN ALMOST EVERY PATIENT. SOME SLOWLY, SOME EVERY OTHER MONTH. The EP community will urge the mechanical intervention before paroxysmal AF, which I believe is your case, persists. When it becomes persistent, it resists treatment. AF begets AF. So, stop the AF!!

You can imagine my disappointment when my first ablation failed. It was so obvious, and my EP, bless his heart, even accepted the evidence downloaded from my Galaxy smart watch. That was when he phoned and agreed that I had recurrent AF. But, I also knew that a first ablation is going to fail to stop AF about 30% of the time. I was unlucky. I also knew that subsequent ablations have a consistent 80% success rate, and I just knew that Dr. Novak would not repeat his wiff. We were both right.

Be positive. This procedure restores 'living' to a great many, myself included. As I said, I couldn't wait. I no longer look grey, as my friends and dear wife said to me. I didn't look good, I sounded down, I couldn't even laugh during a sitcom for fear of breaking into AF...which I did many times. No, I'm swinging a mattock at root balls in my garden, dragging heavy hoses and winding them back up on their reels, riding a bike, climbing the steep 160 steps out at the Goose Spit where I live...and they ARE steep...and I feel so much better. If your EP is a firecracker, and a perfectionist (a nurse told me that about Novak), you can count on one or two ablations and you should be good for many years to come.

Stay on that list!!

Gloaming, thank you so much for taking the time to write such a detailed reply!

I am definitely leaning towards 'A'blation :-)

The weird thing is that if I had been offered it 1.5 years ago when I was really struggling, I would not have batted an eye, I would have done it right there on the spot. I was desperate. But the Canadian health care system is so slow, it took 6 months to see an EP. By then I was doing dramatically better. And it got me thinking that if I have the capacity to improve somewhat on my own, I probably have the capacity to improve a lot more--that I should be putting effort into figuring out what makes me better (for me I think my psychological state plays a huge role) and addressing that rather than a surgical fix.

I honestly believe that if I were on a tropical island, exercising and eating great every day, hours of mindful breathing practice, no work or life stress, I could make a miraculous improvement in the quality of my heart rhythm. Even if I could guarantee simply not getting sick, not getting strep throat nor covid etc. again, and could decide to be happy with less and thereby work a bit less and relax more, I would probably not do the ablation. But that is not the way it is I guess... life is going to get tough, and I need my heart to beat well through the tough times.

I've been in situations two other times in my life where surgery was an option. The first was herniated discs. But they became asymptomatic and now I am quite glad I didn't get operated on. The other was a torn labrum from hip impingement. I did get that operated on after 5 years of pain, and I am very glad I got it operated on. Odd how some parts of our bodies can become asymptomatic, but not others...

I see my cardiologist next Tuesday to follow up on my latest holter. He is going to see a mere 2% PAC burden, no afib/flutter despite no drugs, and say keep going just as I am, hold off on the ablation. I probably would delay the ablation a bit. But in this Canadian health system, if I go off the waiting list, it could be another year before I can get the procedure done...

The procedure being offered is RF, given the EP wants to address both the flutter and the afib in a single session. There's a lot of info out there about afib, but not as much about flutter. Interesting though that flutter often occurs after afib ablation. So I wonder if that won't happen given flutter is being addressed at the same time...

I think the decision is so hard for me because my life is totally acceptable the way it is right now. I have a 6 year old son that depends on my and I'm doing good enough now to be a good father. Sure it would be great to be doing better, but why risk what I already have while he is still so young? Then again, I want to be around and active in his 20's too. And maybe getting the surgery behind me would be a huge load off as I could stop thinking about it. I would have faced my fear. It's both and investment and a gamble I suppose...

Thank you for listening. Any thoughts or input at all is greatly appreciated.

Thanks for your response to my post. On this forum, we strongly advise people to get in line and to do so early. BTW, I'm on Vancouver Island and know intimately how the vaunted Canadian health care waiting-in-line system works. You'll see and orthopedic surgeon in about a year, and it will be at least six months later before you get the letter about your surgery. Thankfully, a wait to see Dr. Novak is only four+ months, and to get his nod another four+.

As I said earlier, AF tends to beget AF, and the AF becomes more intractable over time. You WANT the ablation, and you want it ASAP so that your current state doesn't preclude you from being ablated. As you would understand, there are EPs and there are EPs. None of them will do more than they are confident in doing, and that is why some people are not well served by them. You need a good, busy, and highly skilled EP who does 10-15 procedures each week. Who has been doing this for at least 8-15 years. These hotshots will do what it takes, still no more than they know they can do safely, but you'll have a better chance of being fixed by them.

I don't understand why someone would counsel you to put off ablation. That makes no sense to me at all.

I hope you get other opinions, and not just mine. Others should offer their guidance shortly.

I think my cardiologist is saying that there hasn't been a sham control study, and that there aren't enough long term studies yet, maybe...

Even my EP says I'm on the early end and people are usually further along before getting the procedure. Ultimately they both leave it up to me. I wish the EP would say one way or another what his recommendation is. I guess they don't want it on their conscience if something goes wrong... it is a complex decision and nobody knows what it feels like except the patient. It's just odd that our medical system always says don't google things, don't do your own research, but then ultimately leaves things up to us.

My EP is Dr. Umjeet Jolly at the Saint Mary's Rhythm Clinic in Kitchener, Ontario. The clinic is only a couple years old, though I think he might have been doing ablations a few years before the clinic opened, as there is a gap after his residency. It sounds like the clinic has state of the art technology, they don't use fluroscopy anymore. I think it is a high volume clinic. Here's a video of him talking about the program: [www.youtube.com]

I too have heard that around 10 years experience is ideal. But it does seem like he and his team are full in on this program. I could look elsewhere for a clinic with a longer track record, but I'd be back at square one and it could take a year or more and I would have to travel out of town regularly through the process (not a big deal given what's at stake).

I hear the expression afib begets afib a lot. But then there's also rhythm begets rhythm which I think was said by John D. Day in 'The Afib Cure'. If one could do whatever it takes to stay in good rhythm, then perhaps it becomes easier to stay in good rhythm. Pain is a great teacher, perhaps ectopic beats can teach too...

It really helps me to write all this out and have someone on the other end whose been through it giving it thought and providing such thorough responses. I greatly appreciate it! Thank you!

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SamIAm
I too have heard that around 10 years experience is ideal. But it does seem like he and his team are full in on this program. I could look elsewhere for a clinic with a longer track record, but I'd be back at square one and it could take a year or more and I would have to travel out of town regularly through the process (not a big deal given what's at stake).

That EP lab does look state-of-the-art, and though that is very important, the most important thing is the experience of the person performing the ablation. Can you ask him how many he has done, what type i.e. does he just do PVI (around pulmonary veins), does he have experience ablating the more difficult areas of the heart. What is his success rate (no arrhythmias for a year without medication)? These are very reasonable questions and someone contemplating an ablation needs to know the answers. As far as experience, you want someone who has done thousands, not hundreds as this is not a cook-book procedure and experience is extremely important.

The Canadian medical system (at least where I am) does not make it easy to shop around. You have to be referred to a cardiologist by a family doctor or ER visit, and then the cardiologist refers you to the EP in his network. It would take maybe 1-2 years to look elsewhere, and would encounter resistance doing so. And the EP isn't someone you can easily see, but rather there is a pre-surgery consult with them and if you say yes to surgery you go for surgery. So in the short consult, I tried to ask as many questions as possible, but didn't get a huge amount out of it. They are so maxed out doing routine procedures that they don't have much time to spend with individual patients. The clinic has been open 2.5 years and does three procedures a day (not sure if that's split between the two electrophysiologists and whether that is every day of the week...). He does both cryo and rf. But I don't think EPs here in Canada really search for the more difficult areas to ablate in the heart as much, but rather focus on PVI. Though they would go in the other atrium for doing something about the flutter. I don't remember the exact success rate, but it was something like 80% for a-fib which seems to be a fairly standard number, and much higher for flutter, like 90%.



Edited 1 time(s). Last edit at 06/14/2023 03:24PM by SamIAm.

Can you afford about $25,000 USD? Natale does accept self-pay patients and their cash price is about the same as what the insurance companies negotiate.

Dr. Natale sounds awesome.

If it were just a one time thing, I could manage that, but I get the sense that there are follow-up appointments, possibility of things not going according to plan, complications, and even the possibility for needing multiple ablations. Once going outside the Canadian medical system, costs could snowball. I imagine there would be a lot of extras too, the plane flights for myself and someone to accompany me, and having to stay there for some period.

So I do want to stay within the Canadian system. If anyone knows of any top EPs in Canada, I would be interested to know. The bigger question for me though is whether I want to proceed. It's just something I have to decide... But I do appreciate all the input from everyone. I eagerly refresh this page quite often today! Thank you!



Edited 1 time(s). Last edit at 06/14/2023 06:27PM by SamIAm.

There are no in-person follow ups. After the ablation you are assigned a nurse practitioner who will be your contact for the next few weeks. It may vary from one NP to another, but mine asked only for a weekly Kardia reading. If I had questions, I usually emailed and got a reply within 24 hours.

I went by myself so no extra plane fare. You just have to know how to pack light so your carry on weighs no more than 10 lbs (because that's your lifting limit) on the way back. They ask that you stay in Austin 2 days after the procedure so typically you'd be in Austin for 3-4 days. Total travel cost for me was about $1000, and I stayed in a fairly expensive hotel and had a few nice meals.

But you're right that a second touch-up procedure could be needed. Natale himself will tell you that's possible with any index ablation.

Probably not the way I'll go, but out of curiosity, what's the wait time for Natale? For the consult and then the procedure? I assume you can send them holter results from a different cardiologist...
You're braver than me, I think I'd really want someone I trust with me...

Yeah, I understand, just telling you what your options are.

Yes, you can send them results from a different cardiologist. They take patients from all over the world so this is something they've done thousands of times.

Wait time figure 2-3 months. The consult will be conducted remotely or on the day prior to your procedure. By the time Natale (or any EP) has seen your medical records, there isn't really a lot more they need to know. The consult is for you, not them.

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Carey
I went by myself so no extra plane fare. You just have to know how to pack light so your carry on weighs no more than 10 lbs (because that's your lifting limit) on the way back.

Even that isn't set in stone. I went there alone and when Dr. Natale was visiting in my room and stressing not to lift anything over 10 lbs, I pointed to my rolling carry-on and told him it was more than 10 lbs and he said it was fine to push or pull it, just not to lift it. So, I asked the Uber driver to lift it into the car and out onto the side-walk at the airport. People on the plane were happy to lift it in and out of the overhead for me.

Wait time for Natale depends on your condition. If you are stable and doing well, it can be 3 or 4 months. If your situation is more urgent, you will be fast-tracked and there is always the cancellation list if your travel is flexible. But, I did have to go back for a Watchman and touchup ablation (he had told me beforehand that it was likely given my medical history), so one trip is not guaranteed. The great part though is NSR.

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Daisy
People on the plane were happy to lift it in and out of the overhead for me.

*raises hand*

When I got on my flight back home after my Watchman procedure, wherein Natale himself had stressed to me how they use large catheters for the procedure and to be extremely cautious about the lifting restriction, a rather short, elderly woman was having difficulty putting her carry-on into the bin. So naturally I offered to help and hoisted her 30+ lb bag into the bin for her. As I lifted it, it occurred to me about halfway up that I shouldn't be doing that. I survived without harm, but it's really easy to forget

Does Dr. Natale look for those harder to reach parts of the heart to ablate? Or is it just PVI mainly?

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SamIAm
Does Dr. Natale look for those harder to reach parts of the heart to ablate? Or is it just PVI mainly?

Oh definitely. My ablation report reads like someone following clues on a treasure map! He maps and then follows the clues and in the end will try to provoke any further arrhythmias. He doesn’t end until he finds all areas “electically silent.” The PVI part wasn’t enough in my case and he wrote, “Despite isolation of the pulmonary veins the patient remained in atrial fibrillation.” Also Aflutter would turn into Afib and vice-versa until he got it all.

Carey and Daisy, thank you for all the info. Your recommendation of Dr Natale was pivotol for me, as it getting me looing into top electrophysiologists and what is the latest and greatest in the field. I am totally sold on the idea of pulsed field ablation. It makes so much sense to me to avoid the colateral dammage of regular thermal ablations (I wonder if PFA is what you both got seeing as Natale is a leader in the area).

I met with my cardiologist this morning, and given the improvement I've made over the last 1.5 years and the fact I'm not on drugs, he has suggested no procedure for now. I'm going to take his advice and hold off, but also because I want to wait for PFA. Knowing it's just around the corner makes it hard for me to choose an older method when I'm managing fine on a daily basis now.

And it really helps to know that if things get really bad again, I can just shell out the money and see Natale or some other top electrophysiologist, rather than having to go through the whole waiting list again (I'm now off the wait list for ablation).

I understand that afib is a degenerating thing and I'll almost certainly be getting a procedure at some point, so I'll be back here again. And surely I'll be visiting this forum to discuss afib management with you all from time to time.

Thank you!

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SamIAm
Does Dr. Natale look for those harder to reach parts of the heart to ablate? Or is it just PVI mainly?

I had an index ablation with Dr Natale on June 14, 2023 and 47 minutes of RF energy lesions were delivered.

As far as what was ablated on me, this is from my Electrophysiology Study Report

1) Successful isolation of all the pulmonary veins with confirmation of entrance block
2) Successful isolation of the posterior wall of the left atrium utilizing roof and infero-posterior lines
3) Successful ablation of electrograms along the left atrial septum, floor of the left atrium, left atrial lateral wall and anterior roof of the left atrium
4) Successful isolation of the superior vena cava
5) Successful ablation and distal isolation of the coronary sinus

I'm guessing 4 and 5 on my list wouldnt be a part of a "standard" ablation by a less experienced EP, but I don't know for sure. But these are areas you can use in your questioning/interviewing of EPs.