To Ablate or Not to Ablate : Hi everyone! I... - AF Association

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To Ablate or Not to Ablate

SpritzerAce
SpritzerAce

Hi everyone! I know this is a common dilemma facing AF patients like us. And now that I am facing it myself I really need to hear from you guys to help me decide as I am due for one (cryoablation) in March and I need to decide and book the slot pretty soon.

Just to recap, I have Paroxysmal AF detected in 2016. Was hospitalised overnight to revert to NSR using IV. On medication and was OK. Was off Dronedarone after one year and nothing happened until about September 2018 when I had my second AF. Hospitalised again for a day for observation and converted using IV. Was since put on Flecinade but did not suit me so switched to Sotalol until today. Am on 1 and a half Sotalol twice a day and half of Exforge daily. I am generally OK with occasional ectopics and flutter. Since I have been off dairy my AF is far and between, latest one being last week which reverted less than 24 hours. I also had SVT episode once only in 2009. Generally I am well. I am 51 years old. EP said I have a good chance of success, whatever that means. My concern is quite naturally when I am not in AF I think I don’t need it. But when I get it I want to do it pronto 😁. I have discussed with EP on pros and cons and risks. But am still undecided. There is always a what if at the back of my mind. Also I am under the impression that it is not as rosy as what it seems. Recovery will take months etc. Risk of making it worse than what it already is etc. Appreciate your thoughts and advise. BTW I haven’t met anyone personally who have had a success story on it. So that adds to my doubt I guess. Thanks for reading my rant. 😃 cheers !

23 Replies
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The way you are feeling now is the way we all felt as our ablations drew near. I truly thought after my first one I would be cured, after all that was what I had been led to believe by my EP. I knew nothing about people having lots of ablations and heard through an acquaintance the story of a woman, who was a nurse, having one and feeling wonderfully normal afterwards.

I also chatted to another acquaintance who'd been admitted to a top hospital for an ablation with a renowned specialist, who everyone would know the name of. He chatted to the people in the ward and then decided it wasn't for him, discharged himself and went home.

I could look at your question in so many different ways for and against, but that could take ages.

So with hindsight this is what I would advise and wish someone had told me. Before having any ablations, really change your diet to one that's mainly plant based and artificial additives free. Literally only eat natural foods, do not drink alcohol, smoke or put any food that's not pure into your body. Cut out all sugar and lose weight if necessary. Do not live a sedentary lifestyle, get out as much as you can and enjoy the beauty and peace of the countryside and nature. Stop racing through life, pause and smell the roses - if you understand that.

Remember once your heart has been tampered with, you can not go back to having that scar free heart. Scarring can make the heart become more stiff in it's working.

My first two ablations made my AF attacks worse and it took months to recover a little from them.

My third really helped and I felt better immediately, but I still have AF, now my attacks last for months until I have a cardioversion. After having lots of those, I'm now wondering whether it would be better to stay in constant AF as to be honest once it calms I only notice it when I walk up hills and I do tire quickly too.

Not much help really am I, but have given you more to think about and consider.

Will support you whatever you decide.

Jean

Jalia
Jalia in reply to jeanjeannie50

Absolutely agree Jean !

Thank you so much Jean. I appreciate it very much. Good to hear about it from people who have had first hand experience.

It’s a difficult one and one I can entirely relate to as I was the same re when I didn’t have AF I felt great and thought I didn’t need it and when I was in AF I wanted it NOW to be rid!

Sounds like you are in ambivalence - stuck between 2 opposing forces of equal validity and until something swings the balance toward one side or the other - there you will stay. So what swung the balance for me?

Episodes got more frequent and more symptomatic until QOL declined, I could not do many of the things I used to do. It affected my work, my home life, my relationship and my pleasure. AF becomes progressive.

So what are the options:-

In hindsight - I could have done a more about lifestyle choices - lost more weight - trouble was the AF + the drugs & I was then taking made that ridiculous as I became exercise intolerant and I felt miserable as I wasn’t doing the things I used to so I ate more instead of less. The drugs also made losing weight very difficult.

Drugs - a long time to be on drugs and I was frightened of the affects. Eventually they stopped working anyway and AF broke through. Sotolol is rarely used for lone AF in the UK and it was a drug I refused anyway.

Ablation - At the time (2013) I thought ablation was the proverbial best thing since sliced bread. I had an RF ablation as cryo wasn’t an option for me as I have a conjoined pulmonary vein so I was 7 hours in the cath lab under sedation, back on the ward and eating my dinner 20 mins after coming out. Went home the next day and I’ve never felt so good for years!

1st faulty thinking - this ablation lark was a doddle! In hindsight I was on a high from the sedation + feeling so good as I had been on oxygen. When I first woke up I though I was dead - because for the first time ever - I couldn’t feel or hear my heartbeat!

3 days later I spring cleaned the house, 10 days later back at work, then flew to Spain for a few weeks.

6 weeks later I was back in AF - 8 weeks later I was in acute coronary care for 3 days with AF, very high HR & very low BP every time I lifted my head off the pillow.

2nd Faulty thinking - you may feel great after ablation but you need time to heal, I had undone all the hard work of the EP because I thought I was OK.

2nd Ablation 12 weeks later. More sense this time - rested and rested and rested and kept feeling worse. No AF - but felt weak and just tired all the time. No explanation as to why. A few months later I developed symptoms of an autoimmune disease - a quite rare one - which was far more devastating than AF. It seems, although not proved, that the drugs given for AF + sedation exacerbate this condition.

3rd Faulty thinking - ablation may stop AF but nothing is without risk and one needs to always balance the risks:benefits. There are known risks and unknown risks but unfortunately the unknown risks you cannot put in the balance equation so even with hindsight - would I have gone through the 2nd ablation again - YES - without hesitation as the thought of living with a chance of no AF was just too appealing.

And I had absolutely no AF, just a few minor ectopics when I got stressed or did too much for 3 years - when the AF returned - but it wasn’t as symptomatic, it was only the occasional episode rather than 2-3 a week.

4th Faulty thinking - 1 ablation will ‘cure’ AF - it may but those people don’t hang around AF forums or will tell you that it is a ‘cure’ when it is a treatment which may not be everlasting.

So it comes back to - what are you more afraid of? Progressive AF with all the baggage that will bring?

OR - Minor, mostly rare (mine was a very rare case) risks or side effects or of needing to take time out (and I really do mean take the time for you and only you) for your recovery?

You do not need stress of any kind when you are recovering so plan well prior to ablation. Be prepared to set aside 3-4 weeks of doing nothing but pleasing yourself. Read the recovery sheet - it was dictated by patients who have had ablations not doctors. Rest plenty, take daily walks in green nature, eat well - pre-prepare good organic meals. If you are going to invest in having an expensive treatment - spend at least half of as much time, effort and money on your recovery.

Only you can decide. Ablation is not a cure all salve, it takes time to recover but done well - and I only wish someone had told me this 7 years ago - it can be a very successful outcome but nothing is guaranteed in life - there are risks but if you only focus on the what if’s also consider the flip side of what if’s - what if you don’t?

Hope that helps and let us know how you get on.

Best wishes - CD.

SpritzerAce
SpritzerAce in reply to CDreamer

Hi CD. Thanks for the taking the time to share your experience. Really what keeps me awake at night about this is the usual thought of what if it will make my condition worse than it is but on the other hand the thought of living an AF free life and not having to put in too much of toxic medication in your body sounds like a dream life to me right now. But nothing is guaranteed, I know. I appreciate all the opinions here and I know at some points soon I need to decide. Thanks again.

Hi SpritzerAce

My neighbour (fit firefighter who’d had PAF for about 12 years) had an ablation about 6 years ago and hasn’t had any dramas since. I’m coming up 12 months since my last ablation and life is good - back at work, traveling and enjoying life - something I wasn’t able to do for 12 months prior to that. Medications weren’t able to control my arrhythmias but thankfully the ablation has got things under control (minor bumps and a few ectopics from time to time but nothing major).

My EP said that in younger people like us, ablations have a much better chance of working. That said, there’s no guarantees 😃

SpritzerAce
SpritzerAce in reply to Kaz747

Hi there! Happy to hear that you have. Apa putu e outcome from the ablation. Am hoping mine will be too should I opt to have it. You only had one ablation?

Kaz747
Kaz747 in reply to SpritzerAce

I’ve had 4 - 2 for SVT (when I had this second one they discovered I had Multifocal Atrial Tachycardia). Then about 9 months later I was admitted to hospital with atrial flutter and given a cardioversion. Then a couple of months later I was readmitted with atrial flutter which morphed into AF. I had an ablation for Flutter and AF. It fixed the Flutter but not the AF so I had ablation number 4 six months later and have been good since. So I’ve had a few different arrhythmias,

Ultimately, this is a decision only you can make. You will probably receive for’s and against’s in equal numbers and because we are all different and generally respond to treatments differently too, by the time you have read all the replies, I fear you will be no further forward.

All I can do is offer my thinking but there is no right or wrong answer to this dilemma.

You are relatively young to be diagnosed with AF and with Paroxysmal AF, you are more likely to respond well to an ablation. You have already experienced a range of different medications with varying success so with a fair wind, you could be looking at 30 years or more with a condition which generally (but not always) progresses. This suggests that you will be faced with two alternatives. Either taking potent drugs for the rest of your life or having an ablation which is likely to control your symptoms even though you may have to have more than one and/or you might still need lower doses of medication.

You talk about the failures and those who may have experienced problems and whilst this should be considered, please bear in mind how many thousands of ablations are performed annually around the world. In truth, the number of folk on this forum who categorically say that they wished they had not had their ablation is negligible. As is the number of people who say they found the experience dreadful and would never do it again. Forums generally provide a platform for those who have experienced problems. The vast majority of folk who have who come here after diagnosis, tend to disappear and get on with their lives after treatment. It is true that occasionally, a few may return years later because AF had returned but it is a fact that an ablation is not cure AF.

For me, having been diagnosed with persistent AF in 2014, I decided to pursue the ablation route back in 2016 and although I may need a third later this year, I have no regrets. Hope this helps a bit in your decision making process.......

Ought to add that if appropriate, lifestyle changes are crucial, regardless of which route you decide to take. If you know you have problems in that area, then they should be addressed first as they definitely can reduce the burden of AF.

SpritzerAce
SpritzerAce in reply to FlapJack

Thanks for sharing your views. Appreciate it very much. So in the span of 6 years you have had 3 ablations? Why is that may I know ?

FlapJack
FlapJack in reply to SpritzerAce

The first in 2016 was a cryoablation and the EP had a problem treating with one of my pulmonary veins (which is not unusual) hence the second RF ablation in 2018. At my review, 18 months later, I had had 6 episodes of AF and the EP recommended a third but I was also diagnosed with an overactive thyroid which may have a connection. This is currently under treatment so by the time I get to the top of the waiting list, around July/August, hopefully I will know if the ablation is necessary 🤞

I can't really add to what others have said, but I'm almost 3 years AF free and would jump at the chance for another ablation if I needed one.

Oh, and AF is a progressive condition so you may be only having an attack every once in a while but the likelyhood is that they will get more frequent and possibly permanent

SpritzerAce
SpritzerAce in reply to Mikee69

Thanks for the reply. Yes these are the factors that would make me keen on doing it while it is till paroxysmal. Wil seriously consider it.

BobD
BobDVolunteer

All I can say is that since my third ablation for AF in 2008 I have been AF free BUT I still had other arrhythmias such as atrial tachycardia from time to time and had a fourth ablation for A Tach last August since when my recovery has been much slower than I would have wished.

You really need to make a choice and not look back and as you have said when in AF you want ablation NOW .

SpritzerAce
SpritzerAce in reply to BobD

Hi Bob! Thanks for the reply. Yes I guess I don’t want to be looking back ten years down the road and regret not doing it earlier. I think by now I am quite set on doing it. Thanks again for sharing your experience.

Hi, if I were you I'd have the ablation because you are young and otherwise healthy heart wise. So there is a positive reply for you! My ablation failed after two years but I'm doubtful about having another ablation for various reasons special to me, one of which is a leaky mitral valve which is a cause of AF and isn't going to go away! Your odds of success as defined by no more AF or reduced episodes seem good so I think you should act according to your circumstances.

Best wishes 💜

SpritzerAce
SpritzerAce in reply to Buffafly

Thanks for the reply. Yes I am hoping for the best outcome too.

Hi, I’m almost a month post op from cryoblation. I can’t help you decide whether to have it or not, but AF is only likely get worst and if your EP thinks you are a good candidate then I’d take that.

All I will say is I massively underestimated the recovery. It’s not terrible but you will need proper physical and mental rest for at least the first 2 weeks maybe longer.

I’ve actually kept a daily diary since my ablation and will be posting soon to give an idea of my journey.

Don’t be put of but expect to be tired, sore, in AF (yes the recovery causes what the operation set out to fix), low mood, high mood, anxious and many other feelings during the early recovery stages.

Keep us posted!

Thanks for sharing your experience. Yes I am going for cryoablation as well. I try to be mentally prepared for the “aftermath” of the procedure but ha ha I guess I can only prepare so much. Not sure what my reaction would be come the time. 😀 Here’s wishing you a speedy recovery. Do share more on your experience and recovery journey when you are ready.

BobD
BobDVolunteer in reply to thumpthump

Which is exactly why we produced our Recovering from Ablation fact sheet. Nobody understands how long it takes.

Well firstly don't worry about taking the 'right' decision as you will never know that because you won't know what would have happened had you chosen the alternative! Therefore the decision becomes personal as to what your gut feel is taking into account all your individual circumstances including some very worthwhile opinions here.

I totally agree with jeanjeannie's comments and have done just that and more including taking Flecainide for 6 years experiencing increasingly good QOL albeit still with occasional concerns. I take the view that 'the surgeon's knife' is the last resort and in the meantime any postponement should mean an improved ablation procedure in the future as medicine advances. Good luck whatever you choose.

Hi there. I Am in a similar position. I am seeing my EP in a couple of week as the episodes have def more frequent and I am in AF once a week for 2/3 days. Are you taking any magnesium supplements? My EP said there are no proven benefits and I haven’t started as yet. As I am 71, I need to consider drugs vs ablation I think. What was wrong with the flecinade?

Hi there ! No not taking any magnesium as my EP like yours told me the same thing. Flecinade induces atrial flutter for me. I have more or less made up my mind. I am going in for the ablation end of the month. I am hoping that it will improve my quality of life as in less episodes as I understand that you can’t get rid off AF totally. I hope your EP will be able to help you reach a decision after your consultation in a few weeks time. All the best.

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