AF Association
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To ablate or not to

I've had paroxysmal AF for some 8 years now. The episodes occur every few months and last up to several hours now but eventually settle with PIP flecainide using progressive 50mg doses up to 200mg so far in 24 hours.

It all started due to my endurance sports (triathlon, long cycles and marathons). I am now 63 and a retired GP

They usually are precipitated by anxiety or exercise and I am a great worrier.

My EP states that ablation is for symptom control/ lifestyle only and there is nothing to indicate it reduces strokes or improves life expectancy. The trials are ongoing but so far have failed to show improved outcomes.

I have much reduced my sport unfortunately for various reasons

He has offered me ablation if I wish. What would you do?

36 Replies
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I also have paroxysmal AF although mine can be weekly and lasts for two days, I've had it about a year and it has got stronger each bout. I to am a worrier which seems to go with it after a while.

I have just had the Cryo ablation under GA and for the first week I have been clear but the second week has brought on some palps but you are still likely to get them for the first three months while it heals, even though it's only my second week after the op I feel less anxious about what's ahead and more confident about beating it, so I would say go for it.

Good luck and chin up.

Ant

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I suspect I'll be the only one saying this but I probably wouldn't (yet), unless you feel there is a great deal to be gained by (maybe) never having AF again. You don't seem anywhere near to progressing to permanent AF and you don't have to take regular medication so I would wait and see what advances in treatment the future brings.

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I went 6 months between episodes, then they started getting closer together, 2-3 weeks.

I went for the ablation and just passed my 2 month blanking period.

I say get it done while you have a better chance of defeating this beast.

The ablation is minimally invasive and very safe although nothing is guaranteed.

Good Luck!

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I strongly agree with Buffafly and the good points he has made. You seem to have your PAF well under control.

Regards

Barry

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For me quality of life is key. For me 26 years of PAF was a living hell.

Also years of AF in whatever form is not good for the heart and in my case has resulted in heavy scarring of my atrium. I also have developed heart block which is poor conductivity between the atrium and the ventrical.

If I were you I would have no hesitation in having an ablation if this has been offered by your EP.

Pete

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Tough call. It seems like you have the AF "under control". Like you I was a high intensity exerciser, triathlons etc. and managed the paroxysmal episodes until 6 years ago when it persisted. Cardioversion and flecainide have kept things pretty much in check since then with only occasional, brief bursts of AF. I too am on a list for ablation and am likely to get the call before Christmas. But like you I'm in a quandary as to whether to have it done or not. If I'm in AF when the call comes I'll be off like a shot, if not, not such an easy decision. It's likely that at some point the condition will permanently break out of the flecainide control envelope and as I'm on maximum dose ablation then becomes inevitable. Being a layman, unlike yourself, I don't regard ablation as a "minor procedure", in my book it's seriously invasive heart surgery and to avoided until necessary! So like Buffafly I'd probably wait.

Steve

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I would agree with what Buffafly has said and hold off for a while

Ive had AF for over 24 years with some largish gaps in between. Ablations have had little effect. Im on a waiting list for no 4

I find that stress and overtiredness are a big trigger but have also had episodes completely out of the blue when everything seemed hunkydory.

I do hope you are able to come to a decision. It's a difficult one.

Best wishes

Sandra

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Hi Goldie, I think - all this is based on my own experience now at 63 with Lone PAF - you need to work with your team to get stabilised first and foremost (i.e. stop the episodes), my Cardio favoured daily Flecainide for this rather than regular PIP doses, which does not encourage the settling process. I started on 50mgs x2 daily but had to increase to 100mgs x2 daily.No more episodes.

But you are not feeling that well and concerned AF may break out again. the good news is you have bought time to identify triggers and reduce them; mine were low Mg & CoQ10, gluten, cold drinks, normal evening meals after 7pm, alcohol, work and social stress and over exercising, poor sleep and sleeping on the left side with not enough pillows (try two and a couple under the mattress longways), overlooked dental work. I consulted a Naturopath and the Alternative Practitioners and was selective in what I chose to follow. Research the Vagus Nerve here and elsewhere.

On the mental health side, you have to accept at the start with the worry and all the tests you are going to be extra anxious and I was bordering depression. It does get better, three years down the road I am fine. Sorry, this post is getting too long so I will shorten it. I increased my Nature exposure, reduced work & social stress, took up a new hobby, practiced Mindfulness and if you are lucky enough to be religious that is also a great comfort. Don't fret over having to ditch a lot of your old lifestyle, ditch the lot and slowly introduce it back (if you are still missing it) as you feel better.

Lastly, I agree with others an ablation is not a walk in the park but at least it's there if needed. Too long I know, but I hope something there helps, good luck!

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Thanks for all your replies so far. Clearly there are a number of options and no consensus.

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I have had AF for two years and have episodes every 2-3 weeks lasting for 24-36 hours. Take 80 mg Sotalol twice daily and extra dose when AF starts. I have chosen not to go down the abalation route at present.

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Sotalol is no longer recommended by NICE for Lone AF management. Certainly not a drug I would take.

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Unfortunately Sotalol seems to suit me best. Have tried Metropolol, Bisopropol and Flecainide.

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If it works it works, I was advised never to take it.

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I seem to be in the minority - if offered - I would go for it as for me, being on toxic drugs long term is a far worse alternative. The drugs, as far as I understand, are also only for QOL as I have Myasthenia - I can't take any of the drugs anyway and actually feel a LOT better on a day to day basis since I stopped them and cope with episodes without treatment.

I have had 2 ablations, the first made things much worse, the second (about 12 weeks later) gave me nearly 3 years free of AF - Yeah! But I was very incapcitated by episodes - POTS & very low BP. AF has returned but I am now much less symptomatic, as long as the AF doesn't trigger the Mg. I can often stop the AF with either vasovagal maneuvers and/or tapping and breathing. I have to say though, it is progressing again and my next step would be Pace and Ablate for QOL - mainly because of the impact on the Mg.

BUT before I went down ablation route I would do something about the anxiety and worrying. CBT for the worry and Mindfulness for the general anxiety. I would also improve Vagal tone by breathing exercises - there is small book called Heal Your Vagal Nerve - available on Kindle. Some very good suggestions.

Anxiety is the bedfellow of AF and worry exacerbates symptoms - in my experience so needs to be treated. Nutrition is also well worth researching for AF - these are the 2 non medical therapies which can help the most. GPs in our area are now training in Functional Medicine - courses mostly run by nutritionists.

I obviously cannot take Magnesium supplements but many on this forum have found these help. I find a weekly bathe in salt water keeps my electrolytes levels up and I find helps lessen episodes. I see a nutritionist regularly and both my EP & Neurologist are very interested in the results and the general improvements I am making. COQ10 or Ubiquinol supplement is a must and advised by both my GP & EP. There is a lot of very interesting studies coming through around nutrition, especially micronutrients.

You don't say how long ago you stopped endurance sports? - I ask because AF is known to be triggered by the enlargement of the atria which happens with endurance exercise and is also known to reduce when you stop - I am sure you know this - so your AF may just stop if the structure hasn't suffered long term changes and returns to normal size.

To ablate or not is a very personal decision. I think there is probably at least one post similar to yours every day. We can all say what we would do, often with hindsight and experience but at the end of the day only you can make the decision as you are the expert on you. Research it but don't over think it!

Very best wishes and let us know what you decide as it really helps others. CD

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Do you feel very restricted by your AF when it occurs? Does it stop you in your tracks? Does it interfere excessively with your enjoyment of life? Is worrying about it getting you down? Does a bold step forward appeal?

Is your AF progressing significantly? Is it damaging your heart's long tern wellbeing?

I'm with CDreamer and would choose ablation rather than long term daily medication. However, I'm answering no to the first lot of questions.

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Lotos of helpful replies so far, but I would add that the answer to your question about ablation should, as your specialist says, depend very much on how AF manifests itself and the effect it has on your lifestyle. For me I went the best part of 20 years living with AF and for many of those I was able to modify my lifestyle to minimise the impact it had on me. In other words I lived with it. In the last couple of years it got worse to the extent that it did seriously impact my life. Holidays became a nightmare, where the slightest change in how I ran my day seemed to trigger an attack, social occasions became a real worry ( and anxiety as CDreamer says is a big factor). The symptoms were always uncomfortable, never unbearable, but the accommodations I was making and the effect this had on me and my loved ones was definitely a big game changer for me. For this reason, I decided on an ablation. So does life become a breeze again after ? Well, of course , it depends on so many things personal only to you. I was given good advice and that was not to expect to be like a 25 year old again, just to feel you had turned the clock back a bit to a time when you could, again live with AF. To date that has worked for me, and if you don't expect miracles it might well work well for you. If it is a fine line decision, all I would say is that like most medical conditions AF rarely gets better, usually worse, with age so bear that in mind. All the best!

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A definate yes from me. I had a tia and so far brilliant .

I can't belive that you heart beating in sinus rhythm as apposed to being irregular doesn't lesson the chances of a stroke

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I think I have been making this sort of statement for some time Goldie so do agree with what he says. All treatment for AF is only ever about improving QOL so if AF impinges on your life and drugs are not controlling it then go ablation.

Remember that AF is almost always progressive but I do wonder, since it has likely been your sports which has caused it whether this will still be the case. We all know that the percentage of AF amongst athletes is far higher than on any other group. ( I read 20% recently) .

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The decision, I think, must come from within - as a cardiologist said to me after his successful PVI ' you will know when it is time to seek intervention'.

If your episodes are triggered by anxiety and/or exercise, what if those are controlled - might the episodes lessen or stop?

When your EP offered intervention, was he advising it or suggesting it as a possibility? MIne offered ablation but advised me to wait - as I'm 73, I interpreted that as a 'don't'.

At 63, you have time to watch and take stock of how things are progressing.

In your position, I would wait and observe but keep the option open.

A big decision, goldie and one which consumed my thoughts too until I opted for continuing with daily Flecainide.

Best wishes with it..

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The fact that you cannot decide is answer in itself. That is that you're QOL is such that you are not begging your EP for an ablation. I think what Buffafly says is spot on.

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I'm only not begging for it as I'm worried about whether it may be my route to eventual nodal ablation and pacing like others I know

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My only reccomendation comes from personal experience. I was diagnosed with PAF 3 years ago at the age of 55 after a spectacular flare up - finished up being blue lighted into resus and admitted for 6 days whilst they sorted me out. Had repeated PAF sessions, fairly short lasting (2 -3 hours) but with significant chest pain. Frequency seemed to be increasing, so after echo, stress test and angiogram consultant suggested cryo ablation, with the probability of reducing my drug loading once it had settled down. As I REALLY disliked beta blockers (they made me feel like I was wading through treacle!), I was switched to ACE inhibitors and calcium channel blockers, which were not as bad for side effects, although I still feel knackered most of the time!

Had my ablation 7 days ago, with no apparent nastys so far (still knackered though....) In my case the decision was relatively easy, the thought of 30+ years on meds was NOT something I wanted to do.

Only you can make your mind up - talk to your cardiologist / EP (and everyone else on here) and listen to their advice, but in the end, it's your own choice

Good luck, hope you feel better soon

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I am in much the same situation have had af for at least 10 years - I was getting outbreaks every few months and treated with PIP Flecanaide, I got fed up with this and started on 100mg per day Flecanaide and have had breaks for up to 2 years with no episodes - the only time I get breakthroughs is with chest infection or other illness and I up the dose and it goes pretty quick. My Cardiologist is pretty conservative and is not pro ablation when I have so little bother with it as he tells me he heard all the electrician and plumber arguments but he tends to see a lot of people requiring 3-4 abaltions and he does not regard it as a minor procedure - he also reckons I may well still end up on Flecanaide....however he has recently referred some patients to Dr Richard Schilling and has had better success but in my case he recommends that for now we continue as is - as someone else said when I am in AF I would have an Ablation that day ... but that's hardly the right rationale. Its a dilemma for me whereas for others it's pretty well a no brainier.

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Thanks everyone. It sounds like I should postpone it indefinitely at present

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If you've not read it, you may find the following book will help you to think through your options in relation to exercise, and hence to what quality of life you are looking for . . .

The Haywire Heart: How Too Much Exercise Can Kill You, and What You Can Do to Protect Your Heart Hardcover – 19 Jan 2017

by Christopher J Case (Author), Dr John Mandrola (Author), Lennard Zinn (Author)

Dr John Mandrola is an American EP and racing cyclist, with personal experience of AF.

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Afib interferered with my life style and I did an ablation at Mayo with dr Packer. 2 years later I am still Afib free. I would advise you to find a very capable dr and get an ablation. Cynthia

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My Arrhythmia was also brought on by endurance triathlon events and the long hours of training. Mine started when I was 51 - some 5 years ago. I initially presented with A Flutter with a HR of 140 just 2 weeks before I was due to fly to Oz to do Ironman Melbourne. I initially underwent an ablation for the flutter which was cured albeit within a few weeks I developed AF. My first Ablation for AF was unsuccessful and also gave me a further SVT arrhythmia. My second Ablation for AF cured the other SVT arrhythmia but did not cure the AF! They started me on Flecanaide which now seems to control my propensity to go into AF. My view is Ablation for AF is a lottery - it's not an exact science. I could have been put on Flec instead of having the Ablations in the first place, but I was tempted by the % success rates quoted! I would only undergo a further Ablation if the Flec started to fail. I have returned to endurance sports and am still competing - I did a 70.3 recently. What is clear is that no 2 cases are the same! Good luck!

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Very impressive. I fear my triathlon days are now over. My last 70.3 was 5 years ago. Now I sit around on the computer far too much

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Every few months for a few hours? Wow. I would think that's totally tolerable without considering ablation that may or may not work and may result in needing multiple procedures. I'm a weekly fibber (around 18 hours) but the episodes are completely tolerable. My heart rate rarely exceeds around 125 and the only thing I can't do while in AF is go to the gym!

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Clearly there are lots of differing opinions!

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Hi Goldie may I wish you good luck with ever route you chose to take. I was PAF with episodes that were difficult to deal with. In May 2016 i went into persistant AF (and still am) I find it much easier to deal with in Persistent than I did when it was PAF. My EP advised against Ablation because it wouldn't greatly improve my QOL. Although I do worry about the long term effect on my heart being in Persitant AF. Good luck.

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I meant to attach this link - it really underlines the importance of who does the ablation and how many procedures they do a year. a-fib.com/david-keane-cathe...

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I had an ablation in Nov 2016 and so happy that I was able to have the procedure. My Afib was not well controlled with medications. I never knew when it would rear its ugly self. So far so good appears to still be a success. I am very grateful to my EP and thankful for the ablation procedure done with the 3-D imaging.

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Although I had an ablation in July and met with the Arrhythmia Nurse at my local hospital this week (I had the ablation elsewhere, at Hammersmith, London), who thinks I'm fine, I don't think I'm fine! I shall wear a 24-hour heart monitor in early December - I don't think 24 hours is enough time to see what my heart gets up to as sometimes a week will go by with nothing and then AF occurs out of the blue at night, (when trying to sleep) or with friends, doing something social! I have cut down on alcohol, caffeine even exercise at the gym (I do walk a lot) and the nurse said, it is not my lifestyle, it is just random. It was random before ablation and is now still random (less severe but still there!). Will this improve by 6 months after ablation? She said I could have another ablation if not, but that is the last thing I want as I found it unpleasant, uncomfortable and very invasive and I still feel the feelings around my heart of when they were doing it!! I think my chronic insomnia (awake all night to 6am and then nodding off for 2/3 hours) does not help but that has not been remarked on!!! Sleeping pills have had adverse side effects (e.g. sleep walking and going in the kitchen and making a mess and not knowing it was me later!). Help!

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I just had an ablation 2 weeks ago. For my circumstances, I thought it was the right thing to do. I havent changed my opinion yet. Today I came across this article which summarises quite well many of my own thoughts on the topic - especially the quality of life limbo and the benefits from drugs. atrialfibrillationblog.com/...

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I too suffered from paroxysmal AF and managed it with Flecainide for a few years until it finally had little effect in controlling the condition. During AF attacks I felt terrible and the symptoms made it difficult to work or exert myself - it affected me very badly.

Then by chance I had a heart attack and I now have 3 stents in my heart. After the procedure I was told I could no longer stay on Flecainide and that the option of going on Amiodorone long term was not advised as it can be quite toxic.

My cardiologist offered the choice of an ablation for the AF or simply learn to "live with it"but to give it a few months before deciding. Strangely, my symptoms after the stents and when in AF were totally different and very mild, and given that the success rate with ablations in NZ is only about 60%, I decided to "live with it". I am now in permanent AF, and the "window" for having an ablation has well passed. Had the success rate for ablation been above 80% I would have taken the chance but as it is not, and many people have to have it done more than once I chose the "safer" option with no regrets.

My theory is - the blockages in my arteries exacerbated the symptoms of AF and now that the blood flow through the heart is normal the AF is not so symptomatic. I don't really think about the AF or notice it too much on a day to day basis, other than the fact I get a bit "Breathless" when exerting. Apparently, many people are in permanent AF and don't know it.

The trick is to ignore the symptoms if you can, as worrying or stress definitely makes it worse. I guess the decision depends on how bad your symptoms are and to what extent they affect your day to day life - Best Wishes - Derek ( 68 year old from New Zealand )

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