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What to do? Advice needed please.

Hi to all.

Wonder if anyone could offer their advice as to what they would do in my position please?

I'm a 54 year old guy diagnosed with paroxysmal AF 4 years ago.

Had Versions twice and since referred to EP for annual visits which is due next month hence this post.

I take Fleccanide 3 X 100 mg daily, bisoprolol and enalapril also.

Blood pressure is ok with this and I seem to have no side effects to the drugs at the moment.

I exercise daily and this never sets my AF off in fact if I have AF my heart nearly always returns to SR when exercising.

My AF is only ever noticeable at night if I've eaten late or had alcohol but generally I have no symptoms.

My EP has said I can go on the list for Ablation at any time but most of the posts I've read seem to show that ablation doesn't work or last?

Really don't know what to do as my day to day life is almost normal although I appreciate the drugs may be helping of course.

Does anyone think that the ablation is good for me or had similar symptoms?

I'm concerned about the effect on my everyday life the ablation would have and very apprehensive about it.

Thanks for reading and the forum is great.

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Hi Mackemaf,

At 44 I decided that I'd rather try alternative options than go down the ablation route and so far I seem to be on top of my AF (still taking 50mg Flecainide am & pm and Tildiem Retard) and, together with the AF nurse I've reduced my Flecainide to this level. I've agreed with the AF nurse that I can email her and that if all is still going well in a few months' time, we'll look at reducing my drugs further. On the other hand, if the AF picks up again I can restart the wait for an ablation.

As you say, there are people in both camps on the forum and each argument has its pros and cons. The big advantages of ablation to me seem to be that with paroxysmal AF, it has pretty good success rates, particularly in younger people (but usually after 2 ablations) so for people whose quality of life is greatly limited by AF it can make a huge difference. Also, it eventually removes the need for the beta blockers and Flecainide, although it seems that you would probably need to be on anticoagulants over the longer term.

However, the procedure causes scarring to the heart and for me, that was the much bigger concern. I'm the sort of person who prefers to sort out the root of the problem, rather than just fix the symptoms and I've been using Amatsu (a form of Japanese osteopathy), specifically the cranial aspects of the treatment to try and reduce the likelihood of the wrong electrical signals taking over the heart in the first place. (I've also completely changed how I position my shoulder rest on my violin recently so that I don't tense up while playing as AF episodes often followed a rehearsal - what a difference!) This is only my experience and other people (including my husband!) may be sceptical, but it's helped me to feel in control and life is pretty much back to normal. Providing I can continue to reduce the levels of my drugs and I don't get a load more AF episodes, I'm happy to continue on this basis.

When I first met my EP, he told me that he would view success via the medication route as getting down to 2 AF episodes per year. At that time I was getting episodes every few days. Increasing the Flecainide didn't seem to make much difference so I started on the ablation waiting list then started the Amatsu, at which point I saw a big difference and decided to hold off on the ablation for the reasons above and because my quality of life wasn't being affected very much.

At the end of the day it's your choice, in conjunction with your medical team. Look at the advantages and disadvantages of both options. For my EP, quality of life was the big factor as to whether he would suggest an ablation and that's what I keep returning to when assessing what I should do next.

Hope that helps.

Caroline

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I think that you have the AF types mixed up. For paroxysmal AF the success rate first time is between 70% and 80% but some EPs are now quoting 90% though their definition and parameters are not usually quoted. However for persistent AF the first time success rate is only 30% and therefore it takes two or more attempts. This is why many EPs believe it is important to try and do the procedure earlier rather than later (and that can be a few years) so that it is rectified whilst still in paroxysmal AF.

Another thing to bear in mind that some of the people like BobD here had theirs done years ago. Since then the techniques, mapping equipment, knowledge, etc have improved considerably. Cryoablation has also appeared on the scene.

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Hi Peter, it was paroxysmal AF I was thinking of. Even ablation for paroxysmal AF has an expectation that 2 may well be needed - the EP explained to me that the 70 - 80% success rate included a combination of people fixed after one ablation, fixed after 2 or even just fixed to the point where the drugs could keep it at bay where they couldn't before.

Caroline

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Hi Peter

Thanks for your comments which is helpful as the Ablation surgery is as you say becoming more successful all the time.

My EP is sitting on the fence to be honest and not pushing me either way thats why im struggling to make a decision in some ways.

If it was a 90% success rate i would go for it i think.

Thanks once again,

Andrew.

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If you are in paroxysmal AF then the rate is 80% to 90%. See AFA website and also 2015 Patients Day Presentations.

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Hi Caroline

Thanks very much for your response and the information especially regarding Amatsu which is something ive never heard of but i will do some research on as it sounds interesting.

As you say its all about quality of life and i will bring this to bear when i meet my EP next month.

Glad things are almost back to normal for you and hope this continues.

Thanks for your advice once again.

Best regards,

Andrew

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I think it really depends on whether or not you are happy to be taking drugs for the next thirty odd years.

Ablation for those with PAF is usually quite good at improving quality of life (QOL) even if it takes more than one procedure. I had three and although I still do get some arrhythmia it is not the dreaded AF and now coming up seven years since my last ablation and apart from warfarin which I intend to stay on till death I take no drugs for arrhythmia.

One point that I always make to people about this forum is that it is heavily weighted to the failure side of things. Those with successful ablations drift away very quickly as they have no need of our support. As an example a case in question re-appeared recently when his AF returned. I can think of very many who no longer post here after their ablations so presumably have no need.

Yes many people fear the procedure out of ignorance (the only thing to fear is fear itself) and in a mistaken belief that there is a high risk involved. Of course anything we do in life has a risk, even doing nothing, the secret being to balance risk against benefit. We have more than one member here who's QOL has been ruined by drugs which were meant to improve it , flecainide being one in question. You see it is all about balance.

I really do not know what you mean about the affect it would have on your daily life? Of course you would need to take it easy for a few weeks in order to get the best chance of success but most people find that easy enough and once fully recovered (about three months) you should be in a better place than now.

I can't make your mind up and would not wish to influence you but suggest that you read up all the fact sheets on AF Association website so that when you DO make that decision it is from a position of knowledge and balance.

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Hi Bob

Thanks for your response which is appreciated.

I don't want to be on any more drugs than really necessary but my EP has indicated many times the risks from warfrin which I'm not on and would like to avoid if I can.

Is this always along term requirement after ablation do you know?

The point you make about the fact that many of the successful ablation safe never mentioned on here as these guys no longer post.

Because of this I had formed perhaps an opinion that nearly all the ablations were unsuccessful.

I'm going to do more research on the ablation success rates I think and go from there.

Thanks again Bob,

Andrew

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Look at the AFA 2015 Patient's Day Presentations.

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My decision to go with ablation was based on my EP's response to my questions. His lack of concern for the procedure (like treating a common cold) risk, played a major part. The fact that they had tried every drug and the only option was Amiodarone sealed the deal. The EP was up front with everything he told me. Ablation risk factor 1%. Amiodarone toxicity, high. The chances of needing a second ablation, highly likely. He was right on every count.

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Hi mackemaf. Your AF sounds not unlike what mine was, although I'm older. I was keen to go down the ablation route but as things seemed OK on flecainide I left a three year gap between No 1 and No 2. I regret doing this as although it seemed perfect at first, AF crept back.

Flecainide can do more than just control AF and I now regret taking so much (I took 150mgs x 2 in a day latterly) for so long. I was able to give it up after the second ablation.

I feel I've moved forwards such a long way - two years ago I was far from happy. My heart is less perfect than I would like - it used to be on the slow side and is less so now - but is OK.

As Bob says, quite a few people who achieve success with ablations tend to drop out of sight on the forum.

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Hi Rellin

Thanks for answering.

Are you all ok now and free from AF following your second ablation please?

What medication if any is required post ablation please?

Thanks

Andrew

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Yes, I'm OK, thanks Andrew, and very pleased with the way I am, but not entirely free of odd things going on. The heart had a real wobble a couple of weeks ago - but it was ablated for the third time only 3 months ago and I'm hoping it will settle.

I'm not taking anything post ablation this time (I take losartan and atenolol long term for BP control, plus rivaroxaban) but sometimes an antiarrhythmic is suggested for 3 months or so, just to keep the heart steady. I took flecainide post ablation before. Depends on the patient and the EP. I have a friend who had an ablation recently and she's on amiodarone for 6 months - but her situation is a bit complicated.

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A difficult decision .

Many people are in too much of a hurry to seek ablation. It IS a big deal to have scores/hundreds of scars made to your heart tissue. On the other hand are you happy to spend years on a powerful drug.

We are increasingly told that lifestyle changes should be the first consideration viz reducing stress, eliminating or cutting back alcohol,exercise and maintaining a healthy weight . A plant based diet is being advocated and has proved very efficient in this respect. You may wish to read Dr Michael Gregers excellent book 'How Not to Die' . It's very motivating.

Best wishes

Sandra

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Hi Sandra

Thanks for the recommendation of the book which I will follow up with.

I'm very nervous about the operation to be honest as I've been fortunate enough never to have had an operation previously.

The fact that I seem OK in general makes me very apprehensive of having the ablation and finding somehow I'm worse though I know this is unlikely.

Best regards

Andrew

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Hello Makemaf

I to developed PAF at 54yrs old 2014.

I had an Ablation in Feb 2015, and recieved the all clear in November 15, and completely med free.

I detested Flecainide as it never really agreed with, the only med that really helped was Bisoprolol just before my ablation and after.

A stated by Bob, many who are successful with the Ablation tend to disappear, and you never like to tempt fate by posting the success, only for it to return as some point.

I am so glad I went the ablation route, my EP was always confident of a good result for me, so I went with his advise really, and forever grateful.

Good luck in whichever way you decide to go.

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Hi Mick

Thanks for your positive response and good to hear your ablation was a success.

I would love to think I could achieve the same result.

My EP has been confident also but never really said yes you should do it which is perhaps what I need!

Many thanks,

Andrew

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I had paroxysmal AF for years before braving an ablation. Flecainide worked to start with but the attacks gradually became more frequent. In the end I felt that I had no alternative but ablation. I was cryoablated last Summer and I have been AF free and drug free (apart from anti coagulation) ever since. The procedure was straightforward and I turned out to be in the 80/90% who are successful first time. I wish that I had it done years ago, but as others have said techniques have improved a lot so perhaps waiting was better for me. Modern thinking is to halt AF before it progresses to get even better outcomes.

Peter

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Thanks Peter sounds very similar to me.

Glad your outcome was successful and all is good with you.

Regards

Andrew

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I am just 1 week and 1 day post my first ablation. I asked for one straight away, wanting to avoid taking the more serious drugs (part from bisoporol and warfarin) which, being relatively young age of 53, I could be on for many years.

I know that ablations whilst in paroxysmal AF have a very good success rate, but won't last forever and I will probably need another (or more) as life goes on. I am hoping this will last 10 years if I am lucky.

The ablation itself was absolutely fine, but I am now going through a settling down period which is frustrating.

If you are fine with the drugs, I am not sure there is any reason to go for an ablation at this stage. However, it seems likely the drugs will gradually loose their effectiveness and you will then have a choice between increasing the dosage, trying another, or going for an ablation. It's worthwhile having the ablation whilst you are still paroxysmal, as the chances of success are much greater.

So, IMHO, it is a case of when you have one rather than if.

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AF begets AF so sooner rather than later

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Get the ablation ASAP!

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