Back in permanent AF

[Bigredhear]

Hi,I have been in sinus rhythm for 3 years after an ablation at Barts and been feeling fit and healthy.

3 weeks ago I woke up and knew straight away I had gone back in to AF, this has now been confirmed after a couple of ECG's at the hospital.

I feel very symptomatic at the moment with lots of palpitations and light headiness

I have seen a cardiologist who wants to see the results of an echo cardiogram before deciding what to do next

Should I push for another ablation of try and control this with meds?

Has anyone experienced something similar?

Thanks

[BobD Volunteer]

You have had one and presumably remember it was no big deal so why not try again . I had three over four yeasr before my AF was finally stopped in 2008.

[Bigredhear in reply to BobD]

Hi,

Good to hear that you are no longer in AF

You're right, it did seem pretty straight forward last time and I think I will push for it again, I suppose it all depends on how strong the heart is as well and the chances of it being a success?

What made you keep persisting with the ablations?

[BobD Volunteer in reply to Bigredhear]

I trusted my EP

[SamAdmin]

Good morning

Thanks you for your post on the Atrial Fibrillation support forum.

Hopefully some other members will be able to advise you about another ablation, we do know that some people have to go on to have another ablation, it is personal choice whether to change to another medication and would be best to speak to a consultant about this.

We have lots of information on our website about AF if you would like to follow the link below;

heartrhythmalliance.org/afa...

Or if your require any other information/advice please contact us below;

heartrhythmalliance.org/afa...

Kind regards

SamAdmin

[Bigredhear in reply to SamAdmin]

thank you,

I will have a read

[Buffafly]

Just to be very picky, it’s not permanent AF, it’s persistent (over 7 days). Hopefully a cardioversion will put you back in sinus before you think about another ablation.

[Bigredhear in reply to Buffafly]

The cardiologist has mentioned another Cardioversion but it only kept me in sinus for about 14 mths last time, the ablation seems like it could be more of a long term solution but i suppose it's all a bit of a gamble anyway

thanks

[Buffafly in reply to Bigredhear]

14 months is very good, but of course not a treatment. Best not to be in AF too long.

[Buzby62 in reply to Bigredhear]

For persistent AF a CV is usually to see if NSR can be achieved before deciding on an ablation. I’m assuming that 14 months was before your ablation and that was used as a good indiction you could achieve and hold NSR and hence making you a good candidate for a successful ablation. I believe an echocardiogram will always be the first step before making a plan, especially if you haven’t had one for a few years, I had a new one prior to proceeding with an ablation and I’d had one the year before.

Hopefully your echo will be good and that could lead to another CV and/or ablation. Hope you don’t have to wait too long.

Best wishes

[Bigredhear in reply to Buzby62]

I had an echo on Monday and am now awaiting the results.

Yes last time I had the CV first then the ablation.

The only reason I am doubting the process again is that when I went to A&E a few weeks back after realizing i was back in AF, A doctor who saw me said that multiple procedures shouldn't be the answer (she was not a cardiologist) and it just made me question things.

Ultimately I want to be back in NSR as my heart will suffer if its in AF for too long

[Buzby62 in reply to Bigredhear]

I had Cryoablation and was told prior to it that a second RF ablation can be required to touch up. Hopefully it won’t! Multiple procedures are quite common from what I read here. Good luck with the results

[Bigredhear in reply to Buzby62]

Thank you

[Desanthony in reply to Bigredhear]

If you read through the stories on here you will find that a lot of people have had multiple procedures. It seems many people need 2 ablations and some need more. As you say an ablation is a longer term answer and a CV points the way to whether or not an ablation will work so I would certainly go for it. Talk this through with your EP. I would take no notice of any other Doctors if they are neither cardiologists nor EPs. I was hospitalised a few times at the start of my AF journey after calling out paramedics and the Doctor on duty in A&E always said that my heart rate was OK and it was nothing to worry about, quite normal infact - this was when the dreaded bisoprolol had made it drop very low, frequently to 43 when resting and at one time 36 and I could do absolutely nothing. Yes it may have been no problem to him, my heart was still beating, I was still alive and in the right place to be observed and treated should anything go wrong but I was a fit and active person who couldn't even walk downstairs - let alone up at this time. Only listen to your specialists they know your condition inside out and upside down.

Good Luck

[Buffafly in reply to Desanthony]

I have found that many cardiologists don’t favour ablations - they prefer pacemakers or pace and ablate.

[Desanthony in reply to Buffafly]

That's why I was glad to find that my cardiologist referred me to the EP in her team for an ablation - which I unfortunately missed out on because of Covid lockdowns.

[Ppiman in reply to Buffafly]

My specialist (a cardio / EP) discussed pace and ablate as one option to an ablation. It seemed rather extreme.

Steve

[Cavalierrubie]

l feel for you. It’s awful when it rears its ugly head again and deflating. I think a second ablation is getting to be the norm. with most. Having to go back on drugs again is not something to look forward to. The ablation was successful before so l would be looking at a repeat. It’s your decision and l am sure with the help of your Cardiologist you will make the correct choice. Hope this hiccup will soon pass and you will be feeling fit and well as you did before.

[Bigredhear in reply to Cavalierrubie]

Yes going back into AF is really deflating and it just seems to be dominating my thoughts all the time I'm generally a very positive person and I should probably look at the previous positive outcomes from my treatments.

Thanks for the reply!

[Cavalierrubie in reply to Bigredhear]

I hope you will soon be feeling more positive. I anbsolutely hate this damn condition. You will be ok.

[Fullofheart]

14 months free from AF after a cardioversion is amazing (I only managed 2 days) and 3 years after an ablation (was it just one?) Is pretty impressive too. Many people require a second as a touch up. I had 3 in one year but have now been 1 year in sinus rhythm. I have had AF for 20 years. Most of that time it was untreated and about a decade in persistent AF. Not recommending that but saying that to reassure you that being in persistent AF for a short time (as long as you/they keep an eye on your heart rate) need not raise panic....which you could do without right now. Its a big adjustment you're in the midst of, again.But I would say with success rates like yours an EP would be keen to try again with an ablation. And a straightforward cardioversion may well bring quite lasting results too.

You might not feel it cos you're experiencing the very understandable disappointment of being back in AF but you're in a good place I think in terms of treatment options. I hope that's confirmed by your cardiologist. 🤞🏻

[marinoperna in reply to Fullofheart]

Hi Fullofheart,

I've had persistent afib since a few months after taking my covid vax at the beginning of the epidemic that was required for my prostate surgery so it's been a while but not 10 years and that is why i'm writing. My chest isn't pounding like some in fact i really don't know i have AF and do not take any meds. What prompted the change of heart that you waited so long to decide to have an ablation? I'm 74 and thought i was in good health till this happened. Now i worry that if it wait too long it may never get fixed until i read your post. Even more so thinking i should leave well enough alone especially after reading of those requiring multiple ablations and still not "cured" along with those that have been made worse by the "cure" that i should just keep living as i have been! Your comments greatly appreciated

Marino Perna

[Fullofheart in reply to marinoperna]

Hello, there was no change of heart. I was told I was not a candidate for ablation when first diagnosed in my late 20s. I was discharged without follow up and without medication and hadn't seen another cardiologist for that whole time until 3 or so years ago when my heart was being more erratic than usual and I couldn't get heart rate down.Possibly covid was a trigger, possibly menopause, possibly just duration of untreated AF.

I then had lots of tests and, despite being so long in AF and having mild heart failure/ dilated atrium, the EP and cardiologist took a punt and offered me an ablation. First two were unsuccessful and the last one was a longshot but 5 months after the ablation (and having been in persistent AF for the whole recovery period) I suddenly went into normal sinus rhythm. Been that way since. No longer on any heart meds and no longer in heart failure.

I'm told I almost certainly will go back in to AF at some point but the respite is great and if I get offered another ablation, I'll take it.

[marinoperna in reply to Fullofheart]

thank you.

Could you tell that you were in AF? Mine is literally unnoticeable now so unsure as to whether to try to get back into sinus rhythm where i could feel better and maybe have more or just stay like I am! Just don't want a worse outcome as i have read than where i am and none of my doctors will offer a guarantee!

[Fullofheart in reply to marinoperna]

Yes, I knew. My main symptoms were light-headedness and tiredness, dizziness at times, breathless at times, chest pain or discomfort. Symptoms generally worse when HR over 110 for prolonged times and considerably worse when over 140.I think if you are not experiencing symptoms then you have to decide what's best for you as (generally speaking) the treatments are geared towards quality of life ratger than prolonging life.

As I was young being diagnosed and not treated properly I've had more years of impact on the heart, hence heart failure. This is not an outcome that follows for everyone.

If I was in your shoes I'd think about those 3 years of feeling fit and healthy and whether that was an improvement on pre ablation living; and therefore whether that feels worth another procedure.

Only you know how much of a difference it has made to you.

[Bigredhear in reply to Fullofheart]

Hi Fullofheart,Yes I only had 1 ablation and I guess that would be my first choice as its possibly a long term fix, I have been In persisten AF now for over 4 weeks and if its anything like it was on my initial diagnosis 5 years ago I will not go back into sinus without help.

I'm feeling less symptomatic than I was after the first few weeks but am very aware of palpitations and just not having as much energy although I am playing golf once a week and walking every day.

I've heard the term EP quite a lot since posting this time, what is the difference between an EP and cardiologist? I'm pretty sure the cardiologist I saw 2 weeks ago is not an EP

Thanks for your reply and everyone else that has given me feedback.

It's great to have access to so much knowledge and understanding

[Fullofheart in reply to Bigredhear]

An EP is an electrophysiologist who is the person who would perform the ablation. So a specialist in electrophysiology and in ablation procedures. They would make the decision as to whether you are a candidate for a second ablation.

[Nightmare2]

Take advice only from your Cardiologist, push for nothing, let them tell you the treatment you require, i hear a lot though that your treatment is not a permanent for life fox. Good Luck and listen to the experts, listen to others stories, as listening does no harm.

[Ppiman in reply to Nightmare2]

Good advice.

Steve

[Ppiman]

A lot will depend upon other factors, I should think. You say in your other posts that you also have HF, but haven't given your age - two factors that likely will affect the treatment options available, meaning these can perhaps only be determined by the specialist who knows your health history and individual situation.

I have a 90-year-old friend who has had permanent AF for very many years. He was never offered nor would ever have had an ablation, he tells me, and has coped remarkably well. He isn't a worrier, luckily (which is certainly not my case, sadly). Another friend has had five or six ablations, now, at 76, his AF has returned alongside AFl and he has been told he cannot have any further procedures. He copes well, though (again, he's not a worrier - lucky chap).

Steve

[Nightmare2 in reply to Ppiman]

Yes, i know there is no definitive answer but the times i hear of ablations either not working or only for a short time, i am pretty certain that if i am offered one i will deciine if things with my AF remain as they are. I have just turned 77 now. So try and look on things with the view of i am no spring chicken anyway, and only got diagnosed last year, dont particularly want to be wearing the wooden overcoat just yet, b ut i try and remain realistic in approaches to a lot of stuff these days. Take care and stay well.

[Ppiman in reply to Nightmare2]

Reading here, and from what I have been told, the success rate is pretty good overall. In my own case, I was told 75-80% for a first ablation for both my AF and atrial ectopic beats, with that rising to 95% if a second ablation proved necessary.

My AF has increased a lot this year, with lots of ectopic beats being daily now; luckily, my AF heart rate has moderated from 150-180bpm to 85-125bpm or so, making the episodes less uncomfortable. It is making me have second thoughts about my coming ablation.

Steve

[Buffafly in reply to Ppiman]

‘Interest’ in HF? But ‘feeling fit and healthy’ in post.

[Ppiman in reply to Buffafly]

The posts were in the BHF forum.

Steve

[Bigredhear in reply to Buffafly]

When I was diagnosed with HF in 2019 I was definitely not feeling fit and healthy but after spending most of the last 4 years in sinus rhythm I have felt really good, I'm 55 and very active, walking, swimming and golf.The AF has a significant impact on my fitness and mental health so I will definitely have another ablation if offered.

Thanks

[Bigredhear in reply to Ppiman]

I was diagnosed with HF after being hospitalised at the Whittington london in 2019, I was told the the strain of persisten AF had probably caused other issues with my heart.I was 50 then and have had 3-4 years of feeling pretty good after the CV and then ablation.

I had an MRI last October and the report said 'no sign of HF' amongst other things, I found this confusing as I was led to believe that HF is incurable but who knows?

I don't want to live with persisten AF as I feel it every day and from past experience it will have a negative impact on my heart which will lead to other issues

[Ppiman in reply to Bigredhear]

If the MRI showed no signs of heart failure and a normal EF, then you’re in the clear. I’m surprised your new doctor needs another echo given how recently the other, far superior (“gold standard”) scan will have been.

HF is a confusing term, and puts fear into all our hearts, I should think - mine, anyway. I think if there’s no ischaemia or myopathy, it might just mean a reduced EF caused by a reversible condition. Long term tachycardia (which I had from atrial flutter in 2019) can cause this, so far as I know, and my ablation certainly reversed that.

Steve

[Jetcat]

hi big red. I would go for ablation if it’s offered. That’s only my opinion though.!! Iv had 3 and would still agree a fourth ablation if it’s ever offered again. See what your cardiologist suggests 👍

[Bigredhear in reply to Jetcat]

Hi,Yes I think I will go down that route if offered as my experience was positive last time.

Thanks

[Jetcat in reply to Bigredhear]

👍👍

[FSsimmer]

Try not to get despondent. Have you been told you have 'permanent' Afib ?. That is when they are unable to get you back in NSR and give up trying!!...( it can be treated by the way! ). Being back in Afib is a bummer, but they will probably try a cardioversion or another ablation, as its been shown that you are able to revert to sinus rhythm...Hope all goes great for you. Take care

[Bigredhear in reply to FSsimmer]

I have been told that my AF is permanent (persistent) and probably won't reverse without a procedure.It's interesting to read that a lot of people do seem to manage on a regime of meds and live with it.

The difference for me being in NSR is quite noticeable so I am likely to opt for a procedure

Thanks for the kind words

[FSsimmer in reply to Bigredhear]

Thanks for the clarification. its Persisitent like mine was, not permanent ( the two are different )..So, they can try the procedures, so go for it and all the best !!