When do you decide to have an ablation? - Atrial Fibrillati...

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When do you decide to have an ablation?

Lilypocket profile image
36 Replies

Hello

I understand that living with Afib is all about QoL which should help one decide if and when to have an ablation. However Drs' advice is often conflicting. My cardiologist is a great believer in medication for controlling PAF and assures me that many live very well in permanent Afib. I have seen an EP to get another opinion. Obviously he is pro ablation but was a bit "wait and see". For the moment I live well with my condition and the episodes resolve themselves (I'm under medication) without having to go to hospital. I could go on like that but it will inevitably get worse according to experienced members of this site. Is it is better to have an ablation before it becomes too difficult to live with or do you wait and risk it becoming difficult to treat? Opinions differ and it seems to be a fine line between living with it on a daily basis and hoping it will not get worse too quickly or nipping it in the bud before it becomes a real problem. I can live with it now very well but how does one make a decision based how things might be in the future? Sorry if this is a bit long winded but it is not always very clear how people reach a decision to "go for it".

P.s while I'm here can anyone advise me about the benefits of co-enzyme Q10 and any contra-indications for Afib?

Thanks to anyone still reading this!

Take care in these difficult times XX

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Lilypocket profile image
Lilypocket
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36 Replies
Paulbounce profile image
Paulbounce

Hello Lilly.

Defo and rock and a hard place decision.

You wrote

"However Drs' advice is often conflicting. My cardiologist is a great believer in medication for controlling PAF and assures me that many live very well in permanent Afib. I have seen an EP to get another opinion. Obviously he is pro ablation but was a bit "wait and see". For the moment I live well with my condition and the episodes resolve themselves (I'm under medication) without having to go to hospital"

What to say ???

I have found different cardio's say one thing - EP's another and GP's something else. Leave it to late and it may not work - get in to early and another treatment or a better way of doing ablation is on the way.

I'm not a medic so it needs to be your personal decision. However if your EP has said to 'wait and see', for me personally, I would do just that. Please note though that is just my opinion - we are all different.

I'm holding fire just now - maybe it's the right decision maybe it's the wrong one. I guess time will tell - hindsite is a wonderful thing !

Good luck whichever course you decide to take.

Paul

Lilypocket profile image
Lilypocket in reply to Paulbounce

Thanks for replying Paul.

What's your situation - how frequent are your episodes and are they symptomatic?

X Charlotte ( Lily is the dog in the photo - where does bounce come from?)

Paulbounce profile image
Paulbounce in reply to Lilypocket

Hi Charlotte.

Since a successful CV towards the start of last year I've had two episodes but flec (extra dose as a PIP) sent them packing. If afib returns now I know right away.

As for Bounce ! It was a name used for trading Bitcoin - you don't use your real identy as it might attract hackers - hence Paulbounce was born.

Have a lovely day.

Paul

Lilypocket profile image
Lilypocket in reply to Paulbounce

I am now enlightened Mr Bounce 😂

I can't have a PIP as my Flec is 200 mg slow release. The advantage is it is one pill in the morning but the disadvantage is when I go into Afib I can't do anything until my next dose apart from ( under dr's instructions) take some extra beta blocker.

I'm glad yours is under control - that's fantastic only two episodes since last year. I get one a month then sometimes nothing for 3 months. It is worse in Autumn Winter. I take vitamin D. There are no triggers but occasionally I suspect eating to be one. I eat light and am a vegetarian but I have had a few after supper. I keep a " captain's log" ( nope I'm not a Trekkie👽) to compare.

Have a good day!

Charlotte

Paulbounce profile image
Paulbounce in reply to Lilypocket

Hi Charlotte.

Ouch ! I had to have the slow release once when I was traveling - I had run out and they were all I get. The UK ones are the 'instant hit' type and work much better - for me anyway. I would certainly ask your doc about getting them instead !

Hey - there's nothing wrong with being a Trekkie. I love the old Star Treks. Takes me back a bit.

Live long and prosper ;-)

Paul

Lilypocket profile image
Lilypocket in reply to Paulbounce

🤘

Lilypocket profile image
Lilypocket

Thank you for replying. I'm not familiar with the acronym CTI - could you enlighten me 🤔

Buffafly profile image
Buffafly in reply to Lilypocket

I’m puzzled as well! PVI = Pulmonary vein isolation, often by Cryoablation. RF ablation is done with a heat probe and more areas are ablated.

In response to your query, it goes like this

GP ‘This is something you can live with’

Cardiologist ‘You could have one of those newfangled ablations but I don’t recommend it’

EP ‘I can fix you! (Though I might have to have more than one go and - very quickly - somethingmightgowrong)

The latest thinking seems to be that if you are youngish, have recent onset AF and no physical heart problems then you should have an ablation ASAP before it gets set in. If you have had it for some time and are coping reasonably well it’s a bit of a toss up. If your symptoms are intolerable and/or the meds don’t help/suit then an ablation is definitely your best hope.

I agree, go with your EPs advice 💜

Lilypocket profile image
Lilypocket in reply to Buffafly

Thanks Buffafly!

I have had PAf since 2011. Once or twice a year which was stopped in hospital with meds. Started seeing a cardiologist in 2012 and was put on aspirin. In 2015 started Sotalol. Not too many episodes but each episode lasted 12 to 14 hours. Changed to Flec and Bisoprolol in june 2019. Episodes more frequent but of shorter duration . So I suppose meds help but don't stop episodes. The local heart hospital only does RF and cryobalation is not an option. They say it is more effective especially if they discover it is coming from other areas apart from pulmonary veins.

The thing is it seems some people acquire other rhythm problems after an ablation - bad ectopics or flutter. I suppose I'm frightened of the unknown and as things are bearable at the moment I try not to think about it. But I should " suit up" and when all this Covid situation resolved I may go for it!

X

BobD profile image
BobDVolunteer

It has often been said that when the pupil is ready the teacher will come. My own view is that early intervention stands the best chance of a successful outcome and why would you want to take some very nasty drugs for the rest of your life.(anticoagulation excepted of course. OK it may not last forever but I had ten or more years arrhythmia free after my series of ablations and would not change that for the world.

Lilypocket profile image
Lilypocket in reply to BobD

Thanks Bob good advice! So apart from anti- coagulant the other meds will draw their pension hopefully. Yes I think 10 years free sounds good indeed. Are you back in Afib or another type of HR disorder? Most of the time I feel great and think " I can live like this" but during an episode I think " err no I can't" . My last episode I just burst into tears (only lasted 5 or 10 minutes before pulling my self together). They say it is a common condition but I know absolutely no one with it except on this forum. Hey ho.

Take care.

BobD profile image
BobDVolunteer in reply to Lilypocket

Not had AF since 2009 but developed atrial tachyardia about three years ago. Had ablation for that last year but set of something different which we are still trying to understand.

Lilypocket profile image
Lilypocket in reply to BobD

I'm sorry to hear that. Is it related to the ablation do you think? Also does it come and go or is it something you have to live with?

I have a friend in London who suffered from Ventricular tachycardia and had at least 5 ablations until it was knocked on the head. But it was a frightening time.

Take care

BobD profile image
BobDVolunteer in reply to Lilypocket

It is related to my irritated and irritating heart for sure. Post the ablation in August 19 I had quiet a bad time and now it vacillates between fast regular rhythms or slow irregular ones with pre syncope etc so may end up with a pace maker . Covid has not helped due to all the problems with appointments and I have been waiting for a monitor for some time now. One just has to make the most of it and enjoy the good moments. Having survived prostate cancersince 2011 its small beer.

Lilypocket profile image
Lilypocket in reply to BobD

Thanks for explaining Bob. That does sound complicated. Yes a pacemaker is often cited on this forum. I understand its use for pre syncope but not how it helps Afib - how many types of pacemaker are there?

My brother had his prostate removed for cancer at the beginning of 2019. He is now with a very nice lady ( nurse) 25 years younger than himself. One can believe silver linings do exist .

Keep up the great work - you are a mine of information.

Take care

BobD profile image
BobDVolunteer in reply to Lilypocket

Pm can help AF but rare, mostly only when AV node is ablated and the person becomes pacemaker dependent.

Cookie24 profile image
Cookie24 in reply to Lilypocket

I had the same thoughts. When it first started and was every three months, I thought I think I can this with this and that was what ep said. Within a year, the episodes became more frequent and longer. I had cryoablation for afib and 14 months later radio for atypical flutter. Glad I had the ablations.

Lilypocket profile image
Lilypocket in reply to Cookie24

Thanks for replying. Yours advanced faster than mine. Mine has taken 9 years to get this level. Are you meds free now and finally have you had any episodes since?

Take care

Cookie24 profile image
Cookie24 in reply to Lilypocket

Yes, one episode after a very stressful time. I resumed propafenone and went back into nsr before a scheduled cardioversion. Plan to wean off profafenone.

Lilypocket profile image
Lilypocket in reply to Cookie24

That's great! It seems that flutter is frequent after an ablation for Afib. But it must be a little worrying when it happens. If I understand correctly you have stopped medication then except for a once- off situation?

Take care and long may you stay in NSR! 🤞😊

Cookie24 profile image
Cookie24 in reply to Lilypocket

Weaning off 425 mg to 325 mg and then none. EP is working with me on that. He just wants me off the propafenone.

Lilypocket profile image
Lilypocket

Thanks again for your answer. That sounds odd. From what I've read here some people get flutter after an on the whole successful ablation for Afib. and go on to have an ablation for the flutter. I didn't think one ruled out the other (even if yours would be the other way round). But of course you may have other pathologies that might have ruled out another ablation

Does the Flec work for you now after the CTI or do you still have episodes of Afib? Or is it ectopics?

X

Buffafly profile image
Buffafly in reply to Lilypocket

I had PAF, then flutter caused by Propafenone, then diltiazem added to counteract flutter effect, then bradycardia and pauses from diltiazem, finally ablation for both in one procedure.

Mortjulien profile image
Mortjulien in reply to Buffafly

Did the ablation take care of your issues? How long ago was your ablation? Are you still on meds?

Buffafly profile image
Buffafly in reply to Mortjulien

The ablation in Dec 2016 fixed the AF and AFl for two years then the AF came back getting increasingly frequent and longer episodes. Before the ablation it was suggested I might need a pacemaker but my average HR is higher since the ablation so not needed yet. I only take Diltiazem at the moment and am waiting for a cardiology consultation to see if I could take an anti arrhythmic, for various reasons another ablation isn’t recommended.

KMRobbo profile image
KMRobbo

I had a PVI CRYO ablation for afib. Jan 2018. The PVI was chosen as the EP believed that the source of the problem was from the pulmonary vein entrance. I am not medically trained but I believe Cryo ablation was a chosen as it is the quickest / easiest method for PVI . However I understand that its use/ success depends on you having 4 similar sized, round pulmonary veins with a not too variable wall thickness. The cryballon is inflated with cold gas in the vein entrance and this freezes the tissue it touches which produces a scar and this stops the undesired electrical signals entering the heart and causing the interruption to sinus rhythm. Some people have heart anatomy that does not allow this method to be used for PVIs. So in those cases RF ablation is used instead to burn the tissue to form s scar. If the source of the rogue signals are not from the Pulmonary Vein the cryo method cannot be used then RF can be used to ablate those areas.

9 days after my Cryo ablation I developed reentrant Atrial flutter on the right atria.

My EP believed that was promoted by the flecainide I was still taking for the AFIB. ( was early days for stopping the flec). This was probsbly always gojbg to happen. It was nothing to do with the ablation. I had a second ablation for the flutter 3 weeks later. That was an RF ablation also succesful. I stopped all drugs May 15 2018 and not taken any since.

My afib developed for the worse rather quickly. I was diagnosed early Oct 2015 and had 12 attacks by July 2017. Afib begets AFIB. I was then put on flecainide/ diltiazem , the latter caused me problems. Apart from Afib my heart was otherwise healthy and i had no other co morbitities and was 57 years old.

All was worth it in order to come off the drugs and lose the stress of organising holidays and events around the possibility of going into afib.

I do get ectopics, sometimes they can run for days. But I can have several weeks or months without any. I just ignore them They are a minor irritation, and nothing compared to the Afib hassle

I would have another ablation tomorrow to keep out of afib and iff drugs. In hindsight I should have had one after my 3rd afib attack. It would have saved so much time and hassle.

I have no significsmt adverse effects at all from either ablation.

Additionally, I am sure my EP would not have suggested am ablation if he thought I was better off controlling it by drugs.

Best wishes

Lilypocket profile image
Lilypocket in reply to KMRobbo

Hello

Thank you for your detailed and very positive reply! I suppose there are many like you but we don't get very many positive feedbacks on here as the ex- Afibbers don't come on the forum any more. The two things ( they seem silly) that are putting me off is the TOE and having the procedure under local anesthetic 😱. However I think RF is done under a general? Anyway for the moment with Covid it isn't an option.

Here in France we may be prolonging the lockdown until the middle of February. It has been voted in and is just waiting for the Senate to approve. Oh well

Take care and thanks again for giving me your success story. Your EP sounds great! Who is he/ she?

Charlotte

KMRobbo profile image
KMRobbo in reply to Lilypocket

I did not have a TOE. My EP put me on pradaxa dabigatran 25 days prior to the first ablation, and kept me on to 3 months after.

I was ca2ds2vasc zero score.

My EP was Dr Rhys Beynon and I had the ablation at Royal Stoke.

Lilypocket profile image
Lilypocket in reply to KMRobbo

I'm 1 for being a woman lol

Did you have a general or local?

KMRobbo profile image
KMRobbo in reply to Lilypocket

Sorry Local in the groin in both ablations plus mild sedation via arm.

NOT GENERAL was awake and clear head all the way through. I watched some of the first ablation as I could see a lot of the screen.

Was quite interesting.

I dont recall having a choice on the pain relief but I would have chosen sedation.

secondtry profile image
secondtry

Many here favour an early ablation but I am with your cardiologist provided he can stop your AF completely with increased medication without side effects. Ablation techniques are improving all the time with experience and new ideas, so if medication buys you 5 years a subsequent ablation is almost sure to be more successful.

Lilypocket profile image
Lilypocket in reply to secondtry

Thank you for your reply. It makes sense as techniques will surely improve with better results but each time I have an episode I always wonder if it'll be the one that becomes persistent and leave me thinking that I should've done something earlier. Rock and hard place as Paulbounce said.

Take care

secondtry profile image
secondtry in reply to Lilypocket

Yes for sure it is a tricky decision. Often here views are very much orientated around the 'magic bullet' and a 'right' and 'wrong' way to do it. My own view is that success is based on a variety of small steps and also that no-one can ever say whether you were right or wrong (as we don't know what the alternative outcome would have been) so don't beat your self up and just go with gut feel.

Lilypocket profile image
Lilypocket in reply to secondtry

Yes I agree. Anyway can't do anything until Covid calms down.

In France we are heading for a prolongation of lockdown until mid- February. Difficult times

Take care x

secondtry profile image
secondtry in reply to Lilypocket

Bordeaux is the place with a worldwide reputation to have an ablation; we even had our last french holiday near there just in case. It is a standing joke in our family that when ever we go on holiday I fall ill e.g. had my gall bladder out whilst on holiday in Portugal.

Lilypocket profile image
Lilypocket

More drs are great but it is complicated when they close ranks in certain situations.

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