ablation or Flecainide conflicted

[Deepbreath27]

I am lucky to live 5 minutes away from Harefield Hospital, I have had paroxysmal AF for nearly 2 years. Initially taking Flecanide as a pill in the pocket, however episodes became closer together and my cardiologist referred me to an expert EP At Harefield. He put me on the waiting list for an Ablation and recommended I start daily Flecanide. Since taking the medication from the middle of December I have had no AF . My ablation date is in May. My cardiologist had a telephone review and said he would rather I was treated more conservatively and remain on the medication. I am turning 65 , female with no other medical issues. I now have to start Edoxapan for the ablation, which means I shouldn’t ride my horse. Am not sure what to do.

[Hidden]

Did your cardiologist explain why on the face of it he was contradicting your EP? Was he leaving the decision up to you?

[Deepbreath27 in reply to Hidden]

He referred me as he was from a local hospital which is in the same NHS trust as Harefield, however he didn’t discharge me, so I suppose I am under them both

[BobD Volunteer]

A man found himself on a river bank in Africa . The river was full of hungry crocodiles and approaching was huge lion. On one side of him was a cardiologist and on the other an electrophysiologist. The cardiologist said to him "Don't worry I have a powerful drug which will scare away the crocs. The EP said to him " I have a gun and can kill the lion. "

After a short pause the cardiologist leant across and whispered " Occasionally he misses!"

That explains the dynamics between the two .

[Deepbreath27 in reply to BobD]

Ha ha, thank you for that. I had read that ablation as soon as possible was the way to go, but he did mess with my head

[Buffafly in reply to Deepbreath27]

That’s it exactly 🤣 And sometimes the crocs stop being scared……

[Buzby62]

I think maybe you should be on anticoagulant anyway as a 65 year old female.

Have a read of the information sheets here and check your score.

heartrhythmalliance.org/afa...

Look at Anticoagulation and AF, and Treatment Options in alphabetical order and anything else of interest.

Best wishes

[Deepbreath27 in reply to Buzby62]

Yes 65 in June, so almost there

[mjames1]

Tough call at your age. If you were younger, I'd say go conservative with daily Flecainide.

But given that you may not want to stay on Flecainide for life, do you really want to have an ablation well into your seventies when your general health may not be what it is today ?

I had an ablation in my 70's and wish I did it earlier. Recovery was quite difficult.

Or, you can split the difference and try the daily Flecainide for a year or two and then have an ablation, as you still will be relatively young and technology may have improved a little.

Another option is a surgical ablation at some point, like mini maze. Many think it's more of a "one and done" than catheter ablation plus they clamp or otherwise occlude your LAA which means no thinners.

Jim

[Deepbreath27 in reply to mjames1]

I agree, but given the way the NHS is going and the fact I am under a specialist heart hospital, I am going for ablation. I am a physiotherapist and all about being cautious of procedures but also not one for taking meds

[Singwell in reply to Deepbreath27]

I had an ablation at 66 and no problems. There's always the Conservative approach afterwards if the ablation doesn't do the job. Most people find their burden of AF lessens after the ablation- and therefore less need for higher doseage of toxic drugs.

[bean_counter27]

You've got time while waiting for ablation to ask your cardiologist his reasoning i.e. why medication when ablation could be a long term fix? However, 1st time success is far from assured and enduring benefit also not assured.

I'm 62 and have had paroxysmal AF for 5 years, reasonably well controlled by daily medication. (3 months since last episode).

My annual appointment with cardiologist is coming up. I'll be asking his thoughts about ablation, especially pulsed field ablation, which is supposedly lower risk.

I know I should probably have ablation sooner rather than later but my AF is low burden so struggling to convince myself to take one step backwards in the hope of going 2 steps forward.

Good luck with your decision

[Lilypocket in reply to bean_counter27]

I found that my cardiologist only considered conservative treatment but while the meds lessened the burden the episodes progressed slowly but surely until I had an episode every 2 days. I only found out about ablations on this forum! Armed with this info I asked him about having an ablation he finally recommended a good EP and the rest is history.However Flecainide never stopped my Afib as in your case - if it had for me I would have thought long and hard about having an ablation.

But time isn't on our side and Afib progresses. I was 66 when I had my ablation.

By the way I carried on riding while on anti- coagulants (but NOT jumping ).

Take care

[bean_counter27 in reply to Lilypocket]

What were your episodes like?I pretty much know I'm having an episode but usually have to use smart device to confirm. Other than that it doesn't really have much impact. At worst it's unsettling but doesn't cause breathlessness etc

Likewise, my medications don't have any significant side effects. I suspect my metoprolol might make my poor sleeping worse but that's about it.

After 5 years I've just had updated echo and exercise stress echo and I believe everything is OK. At this stage I don't believe my AF has progressed but I'll discuss with my cardiologist at my annual checkup later this month.

What was your ablation experience like?

[Lilypocket in reply to bean_counter27]

Very good ! Just had a bumpy recovery but I think the EP went in all guns firing ! Did the PVs and then box ablation plus Flutter ( didn't have Flutter but he felt as it sometimes developes after an ablation he would prevent it). But each persons experience is different but I am glad I did it!

[Lilypocket in reply to bean_counter27]

Like you I was pretty symptomless but it played on me mentally like the proverbial sword of Damocles hanging over my head. Reduced my activities as worried about provoking it and had trouble getting up hills because of the meds. So my QoL is so much improved now. But if you are fine like you are why change something that is working for you. You can take your time and wait for more updated procedures.

[bean_counter27 in reply to Lilypocket]

I can understand why you went for ablation. Every couple of days is not good and I'd do the same.I'll discuss with my cardiologist and see what his thoughts are.... not so much for doing it now, but under what circumstances I should seriously consider etc. Thanks for your advice

[Singwell in reply to Lilypocket]

Are you doing well now Lily?

[Lilypocket in reply to Singwell]

Yes thank you 🤞 I have had one episode of 1hr since October 2022 (much better than 6 hours every two days 😊). Just hope the respite continues. How are you doing?

[Singwell in reply to Lilypocket]

Thank you. Currently not as well as I have been. Things MIGHT be kicking off again, or it might be due to my TSH level having almost doubled. Technically within range but enlightened GP has sanctioned gentle titration as I was definitely feeling all the delicious hypo symptoms - cold most od the day, difficult to get going in the morning, anxiety (well, AF doesn't help us there does it!) and generally low mood and energy. Fingers well crossed but in any case I've booked a private appointment with EP for reality check.

[Auriculaire in reply to Singwell]

I have very odd fluctuations of my TSH for no apparent reason. I have very slowly titrated my levothyrox up so am waiting for my next prescription renewal appointment to get more blood tests. It is very annoying.

[Singwell in reply to Auriculaire]

Yes, it's a bit weird although in my case I only got to a decent TSH last December after a year of going super slowly upwards. I'm around 52 kilos and coming up to 68 so in theory I will need something between 82 and 92mcg. Until this week i had been taking 75mcg. But the last few weeks I haven't been feeling good, and didn't know why. Then my heart started a bit of shenanigans again. Hoping that a slight increase of 5mcg will make the difference. Looks like my body is happier with a TSH below 1.

[Auriculaire in reply to Singwell]

I take 87.5 mcg 4 times a week and 100mcg on the other days. I went up very slowly increasing my dose every 2/3months. I'm not sure it has had any effect on my afib - that is progressing anyway !

[Singwell in reply to Auriculaire]

It could be it's not linked. I might experiment with 75mcg 4-5 times a week and then 100 twice a week. It's tricky isn't it? I remember taking 100mcg by mistake earlier this year and I ft really good for a few days. I'll run this past the thyroid forum in due course.

[secondtry]

Mmmm..I vote for daily Flecainide, presumably you have been prescribed 100gms.

My reasoning is with no other comorbidities you could be on it for a decade with no problems, whilst the success rate for ablations improves. One member here has been on it for 30 yrs. The ablation procedure and associated checks did not sound good to me, nor the quoted 70% success rate and another most likely will be required.

My experience: 60yo diagnosed, no other comorbidities, put on Flec only 100gms, still 2 episodes a week, cardiologist & EP offered an ablation, I countered with a suggestion I postpone & try 200gms Flec (a medium dose), they agreed. The AF stopped helped subsequently no doubt by many lifestyle changes. 11 yrs later still on the same Flec with only 3 v short episodes in that time , have annual cardiologist check-ups, no side effects or other issues known. I still have anxiety/high cortisol from those early days not helped by interrupted sleep but I am working that.

All that said, I would be guided by the old fashioned 'gut feel'.

[Deepbreath27 in reply to secondtry]

Yes its 50 mg twice a day, since 20 th December with only 30 mins AF in January since. A great improvement, so hard to know, but for most people the anti arrhythmia drugs stop working

[Tapanac in reply to Deepbreath27]

You say for most people the drugs stopped working. Remember people only post if problems. If all goes well we don’t always hear from them

[bean_counter27 in reply to Tapanac]

Unfortunately, there are numerous reports on medical and research sites that AF is almost always a progressive disease. No doubt there are some exceptions but I'm under no illusions, my medication-controlled paroxysmal AF will get worse at some stage. I expect that sooner or later I will have an ablation (or 2 or more) until it's back under control. Even then there's no guarantees AF won't return again.

Sorry to sound negative but that's my understanding and I'd be very happy to be wrong

[Ppiman]

I would say that there's no essential difference between an EP and a cardiologist and the advice of either in helping you should, all else being equal, be sound. An EP is trained in the use of a cardiac catheter, but both treat arrhythmias on a daily basis and both should know the best treatment for you.

That their advice might differ, to me, shows only the difficulties inherent in diagnosing and treating our hearts. So far as I can find out, an ablation hasn't yet been shown to alter long-term outcome better than drug treatment. I did wonder, too, whether an anti-arrhythmic such as flecainide was truly "conservative treatment" (compared to, say, a rate control drug such as a beta-blocker).

Steve

[Deepbreath27 in reply to Ppiman]

I have never been offered anything other than Flecanide, I wonder if it’s because my usual resting heart rate is in the mid to low 50s

[Ppiman in reply to Deepbreath27]

I would say you've put your finger on it.

My own pulse tends to be on the low side, also. l am now taking bisoprolol 1.25mg each morning, too, and then get a pulse of 48 or so. I was told once by an arrhythmia nurse that when high doses of beta-blocker are half for the AF, they sometimes fit a pacemaker to allow the treatment while keeping the rate up. I must say I didn't welcome the thought!

Steve

[bean_counter27 in reply to Deepbreath27]

How high does your HR go when you're in AF? Although unusual, it's possible for your HR could stay remain acceptable when in AF - therefore avoiding the need for rate control.

[Deepbreath27 in reply to bean_counter27]

Highest 177. Usually a bit less but very symptomatic feeling like a squirrel in my chest

[bean_counter27 in reply to Deepbreath27]

Far from ideal, but I've had a thought after re-reading your post. You were started on Flecainide as PIP, where it is more likely to be given alone. Your history indicated its effectiveness on a standalone basis for returning you to normal sinus rhythm. So moving to taking Flecainide daily combined with impending ablation didn't indicate a need to add another medication (betablocker). Your mild bradycardia might also have been a consideration but the only way of knowing is to ask your EP.

[Deepbreath27 in reply to bean_counter27]

Yes that makes sense, it always converted me in a couple of hours. My episodes were 12 hours without Flecanide. However my episodes quickly became so frequent

[Princelover]

I had an ablation last year after increasing episodes of AF at 62. Just to balance the posts a bit I have not had an episode since! So it can work 🙂 I have daily Edoxaban but even after a fall in the woods and a badly cut hand I was fine; just a bit messy!!! Had a CT scan but no issues arose. I’d say it’s a very personal decision but you don’t have to give up doing the things you like.

[Vonnegut]

We are all different but I have been taking Flecainide - 100mg twice daily - for some time now and it is well over a year since my last episode of AF which was ended after a couple of hours with an extra pill and must have occurred around the time I was infected with covid ( no other symptoms but a positive test!). I’m an 80 year old woman and from what I have read here about the operations, I feel I’d rather continue this way as so many people are not sorted after one of the ops on their hearts and I’m not going to live forever! I’ve already outlived both my parents. It’s your decision and hope whatever you go for works out well.

[Tapanac]

well with Af you should really be taking anticoagulants anyway

Unless you keep falling off your horse personally I can’t see why you should stop. Having said that I’m not sure if galloping snd jerking on a horse is good for your af anyway. Perhaps best to ask your EP

All the best

Pat

[Bridgette_]

I'm in a different age category but also had PAF (diagnosed in December 2021), did PIP for best part of a year and then my episodes started increasing so went on flecainide daily. I remember being adamant that I didn't want to have an ablation due to the risks involved. This worked for a few months but then the flecainide became ineffective at preventing episodes. I was having them nearly everyday! Ended up deciding to have an ablation (I have no other comorbidity factors). During the 5 month wait for the procedure, I kept experimenting with the flecainide but it wasn't making enough of a positive difference so I went ahead with the procedure. How long these drugs continue working is different for everyone, but for me I experienced the decline in flecainide's efficacy in a relatively short period of time (I thought it would take years to stop working).

[Buffafly in reply to Bridgette_]

Bob D says Flecainide doesn’t lose efficacy, the AF worsens - but of course the result is the same.

[Deepbreath27 in reply to Buffafly]

Ah that is interesting.

[ozziebob]

I have only my pAF concerns/research to guide me going forward, as I take no daily medications, and thankfully have had no surgical procedures yet.

But , like you, I do think about the possible future treatments I might be "forced by circumstances" to consider.

You wrote "I am a physiotherapist and all about being cautious of procedures but also not one for taking meds", and these expressed concerns, similar to mine, have led me to investigate the options, particularly the Wolf type Mini-maze procedure, which mjames1 has already highlighted above thus ...

"Another option is a surgical ablation at some point, like mini maze. Many think it's more of a "one and done" than catheter ablation plus they clamp or otherwise occlude your LAA which means no thinners".

This would be my favoured procedure, but realise currently it might not be a viable option for either of us. But in the future, perhaps.

You can research this particular Dr Wolf mini-maze here ...

wolfminimaze.com

... where you will find an extensive library of videos explaining the procedure. Or alternatively, Dr Wolf's monthly AF videos on the Houston Methodist DeBakey YouTube channel.

And this procedure, or similar variations, is now being chosen by increasing (but still small) numbers of Forum members, both in the NHS and privately. Quite a few Forum members also now have experience of a similar procedure undertaken in Tokyo by Dr Ohtsuka, a colleague of Dr Wolf, and have returned with very favourable reports.

In this regard, I would recommend you read saulger 's previous Posts.

Good luck with your decision.

[Deepbreath27 in reply to ozziebob]

I have heard of the wolf mini maze, it is exhausting going through all the permutations. Wish I had a crystal ball!

[Beta44]

I had an ablation at 69 and ceased Flecainide at that time. 8 years later still more or less free of AF and Flecainide I know what I would do. The drugs will not control AF for ever and I think it would be better to have ablation whilst you are still relatively young and the heart not badly affected by the AF.

Peter

[Deepbreath27 in reply to Beta44]

Thank you that is reassuring