Ablation or not for Persistent AF? - Atrial Fibrillati...

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Ablation or not for Persistent AF?

Stucoo profile image
21 Replies

Hi,

I know this has been asked many times, but from my perspective it is a difficult decision. I am in persistent AF, had two failed cardioversions, BUT am generally asymptomatic and only 48.

I saw an EP today said he said it he would do the ablation if I wanted it, however there is only a 50% chance of success and that I may need more than one. He also said that as I was asymptomatic, I can be left in AF and monitored as my QoL is good. When I asked about the future he said the previous studies were outdated and that we are in a new era now with monitoring and medication.

There is also a 1-2% risk associated with the ablation as well (which is small)

So, my QoL is good, but I have persistent AF (when I was cardioverted I never noticed the difference). I don't like being in AF or taking the medications, but I can live with it.

The abalation may provide a fix to the AF, but then again it may not. And I may have to remain medicated as well.

Decisions, decisions...

As anyone got any words of wisdom or can provide a perspective?

Thanks,

Stuart

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21 Replies
Peddling profile image
Peddling

It really is a difficult one. Folk on this site will tell you that af is progressive and the sooner you have an ablation the better. Others maintain that diet, coupled with lifestyle changes can keep you well. I was asymptomatic for a long time and never considered an ablation to be necessary. More recently my health has deteriorated and I am beginning to revise my position. Irritatingly there are no guarantees either way, but I guess your quality of life will ultimately make up your mind for you.

I was asymptomatic for 16 years but once I became symptomatic I deteriorated very quickly. I've recently had two ablations and am glad because so far (2 weeks post second one) everything is fine and I feel so lucky to be in NSR and have had the offer of the procedure. I was quite poorly for a while so I know how QOL is affected in my own situation.

in reply to

Just found this old post and I would like to know was it persistent AF?

Thanks

I was in persistent AF when I had mine done, and my EP sounded espescially certain of a good outcome, and he was right as it worked immediately and 100%.

His words were that they would know straight away whether they had got it or not. Mine was bad and very symptomatic.

As you say Stuart, not an easy decision to make. The view I took was that the evidence suggests the AF gets worse and the longer you leave it, the more difficult it is for an ablation to be effective which is why I had mine last year. Whilst there are no guarantees, the general view expressed in the forum is that the vast majority of members do not regret their decision to have one or more ablations. Generally, forums tend to be a "forum" for "bad" news rather than good, so I think we would soon hear from AF patients if they regretted having their ablation(s). Clearly not a scientific or medical assessement, but (so far) it has worked for me.....best of luck, John

Beancounter profile image
BeancounterVolunteer

Hi Stuart

I'm 62 but in the same position as you and let me talk you through what I see as the alternatives.

It it said AF is often progressive, but I have been in it for probably 8 years with almost no change in symptoms, perhaps a little more breathlessness, but nothing else. Is that due to ageing?

Ablation for persistent gets less effective the longer you are persistent, the rogues pathways become even more "normal" and harder to switch back to the correct ones.

But like you there is a risk with ablation, and for me the risk they have not quanitified with you, and I have asked and the answer is "don't know" is not the risk of serious side effects, as you say 1 - 2 % but the risk of making the AF worse. That for me is why I have not chosen ablation even though like you it's been talked about.

In fact most hospitals now will only do ablation based on quality of life, what will the improvement be, and for me the answer we know is little or none, BUT what will the quality of life be without ablation? Will the AF get worse.

But it's a dillema, the longer we leave it the less chance an ablation will be effective, and of course the long term effect of medications is still only partially known especially with NOACs like rivaroxyban which I take.

I can't offer you a solution, you need to discuss it with your EP for a long time I would suggest and then balance the decisions yourself. I have chosen no ablation, only time will tell if that is the right decision.

Be well

Ian

Stucoo profile image
Stucoo in reply to Beancounter

Thanks for the reply Ian.

I did raise the question of could the ablation make me worse and he did not think so. He did empathise QoL as being a decision factor. AF is different for each individual and that is part of the problem, no one can be sure what will happen.

lyssa252000 profile image
lyssa252000

I am 39, and I am in the same boat. I am going through A-Fib to often and will meet with my EP at the end of next month. As awful as A-Fib feels at least for me. I think I would do it. What could you lose if you did it and it didn't work. You would be in the same place you are now. But if you did it and it worked...Man... Think of the relief you would feel. You could feel normal again. There is a lot of life left to live. To me I think its worth the risk.

cuore profile image
cuore

I would question your EP's comment that "we are in a new era now with monitoring and medication." I would suggest that you go to this site and read the 2017 symposium positions on AF that challenge your EP, specifically the works of Dr. Nassir Marrouche:

a-fib.com/2017-af-symposium...

Plus, I would also question whether he/she is up on the latest techniques on ablation. The standard is that the EP must do a minimum 25 ablations a year to be in any comfort zone as a patient. How many does this EP do? Plus, you are only 48; consider how fibrotic your heart will be twenty years and more down the road living in permanent AF.

Stucoo profile image
Stucoo in reply to cuore

Thanks for the reply. I think the EP was making the point that the approach to AF is different now with the use of anticoagulants etc. I saw him at Papworth hospital and he said they do 100s each year. It's a question of what ifs.

jondeanp profile image
jondeanp

I'm 48 and was in the same position (technically still am) as i am on a waiting list for a flutter ablation. Previously been DC cardioverted for Afib.

I also have similar reservations about the ablation. Although i am aware when in Aflutter/ Afib, i am fairly asymptomatic apart from i cannot do high intensity/ aerobic exercise.

I had been in persistent flutter for approx 6 months until 3 weeks ago when my heart decided to go back into NSR by itself.

I have since been doing some medium intensity exercise and debating whether to go back to the EP and get off the meds (bisoprolol & rivoroxaban) and the waiting list. My only concern is if i revert to arrythmia then i will end up at the back of the waiting list queue again.

Prancer profile image
Prancer

Hi Stuart

Yes I agree an unbelievably difficult decision.

Like you, I have persistent AF. Based presumably on my reporting queasiness and tiredness 2 years ago, which eventually led to the diagnosis, it is described as long-standing. I had always been very active, had a healthy lifestyle (non-smoker, minimal alcohol etc.). I had a cardioversion a year ago which worked for maybe a couple of days – a repeat was not really recommended and it seemed that the only course of action available was an ablation.

… which I have just had, this week!

The tiredness, the inability to walk up slopes/hills, a feeling at times of almost “closing down” were not enough to convince me to have an ablation. Virtually all my hobbies are active ones but a lot of the time I could still do many of them, even if to a lesser extent ( e.g. ,had to give up rock n roll but could still go to the much less aerobic jiving as long as I hid out of sight round corners to avoid too many dances!).

So when you are largely asymptomatic and then you are told the statistics re chances of success, the risks of complications, the almost certain need for more than one ablation etc. etc. it is not clear-cut. And the debatable amount of likely improvement (people seem to report still not being able to walk up stairs etc. which I do not quite understand). Should I be content with my lot and not tinker?

I also discovered, to my horror, that I would have to take the toxic drug, Amiodarone, for a minimum of 6 weeks before and for months afterwards. (Actually going on this drug confused the decision further as after 2-3 months - my procedure having distressingly been delayed by several months - I felt almost normal and eventually was found to be in NSR.)

I had to remind myself that I had already, almost without realizing, cut out maybe 2/3 of my usual activities. And I gathered, largely from this site, that things were likely to get progressively worse. And, sadly, having lost my partner and living alone, I totally depend on getting out and doing activities.

Maybe what finally swayed me was thinking that I may never be offered the chance of having this procedure done again. My EP indicated in our first meeting that if I had presented myself 6 or 12 months later it would not be offered (not because of my old age – I am in my 60s! – but because of the probable time I’d had AF).

Sorry this is so long but here I am, post what turned at the last moment into a cryoablation, staying with a kind relative for a couple of days, with time on my hands. This is only thanks to all the contributions from people on this site about their experiences that I know that I MUST rest up, take it very easy and not be tempted into exercise for some considerable time! (May have to start a separate post on this as was given virtually no information on this when discharged.)

Good luck with your decision.

bluecat6 profile image
bluecat6

I am 55 and post 1 month after ablation done in mid-February after being found in asymptomatic persistent a-fib since September. So far, so good. No transient or noticeable episodes and 1 month review was good. When offered the options of the long term medications or the ablation I was strongly leaning to the ablation and when meeting with the cardiologist I said 'medications sound like management while ablation seems to address the source issue - the rogue electrical impulses - and seems more like a real 'fix'. He did the doctor thing (not strongly confirming or agreeing) and said the logic was reasonable. I get the feeling he was favoring and always favors the ablation, especially for relatively young patients. But he seemed to want to provide both options equally at first.

Rachmeister profile image
Rachmeister

Hi Stuart

I'm 52 and faced the same decision, though I have not had it done yet. I have been in persistent AF since last December. I am broadly asymptomatic and am described by the health professionals as "tolerating" the AF well, but I still am more tired in the evenings than I used to be and I cannot walk up stairs, hills or carry things up an incline without getting a bit breathless and moving slower. My EP at Harefield has confirmed that I am a good candidate for an ablation, with around 60% + chance of success after the first one, rising to 80% + after the second then up to 90% + if I need a third. The risk of death or serious complications is under 1%.

The first consideration for an ablation is my quality of life. It is almost as good as before but not quite and I would prefer it to be like it was as I am very active (horses, farm etc). The second consideration is drugs - if the ablation is successful I should be able to come off the digoxin and verapamil, though the EP at Harefield has told me I would have to be on anticoagulants for the rest of my life. I would like to reduce my drug intake if possible. The third consideration I had was will a successful ablation lengthen my life and the answer to that from the EP was a categorical no. He does over 150 ablations a year and is one of the best so I trust his overall recommendation to have the procedure and that I am likely to need a second or even third to get everything. That is a lot of healing time so I have had to factor that in to the decision to go ahead.

I was due to have the ablation this month and then got hit by the double whammy of a breast cancer diagnosis that has led to almost immediate major breast surgery and I am waiting to see whether or not I need chemo or radio therapy or both. I will definitely need 5 years of drugs to help stop it recurring. My EP has been very supportive and wants me to get the cancer treatment done before the ablation but has recommended that I don't wait "too long" i.e. longer than a year for the ablation as the chances of success reduce. Compared to what I have just had done I expect an ablation will not be anywhere near as bad to be honest! So when I am healed enough and strong enough after dealing with breast cancer I will be having it done.

Incidentally the anaesthetists who look after you through any other surgery are VERY interested in your AF and it really helped that I had all the information to hand about my heart, the results of an echo cardiogram and the drugs when I was having the pre operation discussion. I have had to come off anticoagulants completely for a few weeks or months depending on the next treatment.

Good luck with your decision about an ablation.

Rachel

Hellie54 profile image
Hellie54 in reply to Rachmeister

I'm so sorry to hear about your recent diagnosis. It puts everything into perspective doesn't it. When I was first given a cocktail of drugs for AF I felt quite sorry for myself and a bit depressed. I've since had an ablation and so far so good. I'm hoping to stop all medication soon. (After 30 yrs of AF). The thing is, none of us knows what's round the corner especially in later life and AF really isn't that bad (for most). It's so kind of you to offer advice on this forum, helping others while you are going through something much more challenging. You sound like a very brave lady with a positive outlook which I'm sure will stand you in good stead. Bless you and thank you.

Rachmeister profile image
Rachmeister in reply to Hellie54

Thank you Hellie for your kind words. I have always been an optimist and having a positive outlook works wonders not only on your self but also helps others around you who are worried for you. For what it's worth, I think my new boob "Betty" looks completely awesome. The surgeon is extremely pleased with himself, which is always a good sign!

Stucoo profile image
Stucoo in reply to Rachmeister

Hi Rachel,

Firstly sorry hear about your breast cancer diagnosis, I had read your posts on here previously so was aware of it. Secondly, thank you for your detailed reply - it is has been good to hear from people in a similar situation.

One question, when you asked your EP if a successful ablation would lengthen you life and he said no, did that imply that a unsuccessful one would shorten it? I have been looking into the long term effects of persistent AF so am keen to hear his view.

I don't want an ablation, but I don't like being in AF either. Although I have days when I hardly notice it, it has slowed me down and I have less energy - or is that the drugs? I'm, in AF terms, young at 48 and if I was 20 years older my views may be different, so that's why I'm edging towards having an ablation.

Good luck with your treatment and please keep us updated.

Stuart

Rachmeister profile image
Rachmeister in reply to Stucoo

Hi Stuart,

My EP was of the view that an ablation, whether successful or not, would not shorten my life unless I fell into the less than 1% category where the ablation caused a serious complication such as death or stroke (I always find it very amusing that they consider death a "complication", it must be my sense of humour). So he was really talking about risk, which is not the same as success or failure of the procedure. He explained that a second or third procedure would often be needed to "touch up" the original work if rogue electrical signals were still getting through. The ablation scars could heal over or the part of the atrium wall he had ablated may in fact be thicker than he thought so may need a little more work. These later procedures would be shorter than the first procedure (which he said would take 2 to 3 hours). He also expressed the view that Harefield had a better risk profile than the national average and secondly, that although he hadn't got enough data yet, his belief was that an ablation should lower the risk of stroke in the future, which can only be good news.

For me, the beta blocker I took for 18 months (bisoprolol) really made me have less energy and I found I was very wheezy and coughed a lot and for several weeks when I had a cold, but I couldn't actually be sure about this until I stopped it. It only became clear when I switched to verapamil and suddenly I had lots more energy again and no wheezing, but I am still not like I used to be. There are a lot of professional opinions out there that say that persistent AF will not kill you if it is managed i.e. heart rate kept down and anticoagulants taken to deal with the stroke risk. This is why it is perfectly possible to carry on without an ablation and why quality of life is one of the most important factors in your decision. Both my cardiologist and EP are of this view.

The best advice I have been given is to get yourself into the best shape possible: do lots of moderate exercise; ditch processed food; gently lose any excess weight; listen to your body; eat lots of heart healthy food (google can help you on this); stop alcohol and limit caffeine; take the supplement magnesium taurate (you can get it from amazon and I can really tell the difference now if I don't take it); try juicing green things and hiding the taste with apple; try dry body brushing to improve circulation of lymph; try some basic meditation and sleep as much as you can. Your body will be able to recover from an ablation quicker if you do these things and if you don't have an ablation it will be in the best shape to help your heart carry on into old age. I have been trying to do these things for 3 months and I think that they have a lot to do with my current speedy recovery (my surgery was only on Wednesday this week) and the doctors being amazed with how well I look and how quickly I am healing.

If when you have thought about it you are still unsure, it is also worth paying for a second opinion from another EP.

All the best

Rachel

Fab2ishi profile image
Fab2ishi in reply to Rachmeister

hi there just would like to say staying in persistent AF give you heart failure???

I have been told if I don’t do anything about my persistent AF I will have a heart failure

mbheart profile image
mbheart

I am in a similar situation to you. Do you have any updates, Stuart?

Stucoo profile image
Stucoo in reply to mbheart

Hi, I had my ablation in July last year, but went back in to AF with 12 hours. A couple of months later I had a cardioversion and have been in NSR since. I am still taking Sotalol but will hopefully start to come off that after my next review in April/ So far, so good.

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