AF Association
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Ablation woes

Time and time again I read about peoples negative ablation results. This is somewhat depressing.

It makes one wonder if there is such a thing as a truly successful ablation for all types of atrial fibrillation, especially permanent afib.

...and with due respect to the claim that people that may have had successful procedures do not write about it...I disagree..I feel certain that if one has a truly successful ablation, that person would share their joy and delight with as many people as possible in order to spread hope and encouragement to folks thinking of having the procedure.

Haverhill 88

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I still stand by my previous statements on this subject.

Those who have successful ablations don’t even seek out our forum in the first place.

The NICE organisation would also not allow EPs in the NHS to continue such a large number of ablations if there was no benefit. There are large cath labs set solely with this purpose in mind

There have also been a number of successful reports from members of the forum posted, some quite recently.

The main reason members are here is because they have had problems. Some, like me, hang around even when things are better just to help others.

Pete

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Just a minute Pottypete....What about the many many people who on this site post that they have an ablations scheduled...surely they would follow it up and share with everyone the good news if the ablation was a success.

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Statistically we are still in the minority.

Try some positive thinking.

I have had 7 ablations and after the last one my QOL has been enhanced significantly.

I am the exception in that I have had so many.

Each additional ablation added to the previous work it was not a case of failure.

I still say ablation is a good option and those who have had a successful outcome either don’t come to our forum in the first place or they don’t hang around for long after.

I hang around to try to help others.

Pete

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I’ve been seeing people say the one that had successful ablation or some how got his afib ‘cured’ tend to move on with his life and doesn’t bother to post in the forum. Sorry but I really don’t agree with it, at all. If I’m ‘cured’, I’ll definitely come back and spread the word and help other people. Sharing joy makes one even happier. It is that simple. I don’t think if a person has been posting regularly suddenly stopped after he’s ‘cured’. The only reason I can think about is he’s either dead after the treatment or became too weak to even log into the forum. Sorry this is a bit negative, but that’s my logic.

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I know a lady who had a successful ablation and she declined an invitation to meet up with others saying she wants to put it behind her now.

I think people have busy lives and just don't have time to pop in and say they are fine. People like Japaholic do come back from time to time and give us all a boost.

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I hope this is the case. I hope there is a cure though everybody says no. I hope I don't have to deal with it anymore for the rest of my life.

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Well, one thing is certain and that is that knowledge and expertise will only get better and whatever we think now will be out of date in a few years' time. I know you find AF difficult and it's certainly a complex condition, but treatment has taken giant steps forward of late and I hope some of the posts in this thread have encouraged an optimistic view rather than a pessimistic one.

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You are obviously a very kind and generous person and I respect you for being that way.

I am sorry but life for many has far too many other pressures for the majority to be philanthropic in this way.

Pete

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Where are you reading all these woes?

I think this forum is quite heavily pro-ablation, usually. A high percentage of people here, particularly the more frequent posters, have had them.

There are obviously going to be a wide range of opinions and experiences, so there is no one-consensus about everything, but in general if you ask "should I have an ablation" you get a lot of positive responses.

Even a lot of the people who have had ablations that haven't stayed successful will comment that the x years they had without AF were worth the ablation, or that they'd no hesitate to have a second (or third or fourth) one.

It's not a guarantee of "cure" particularly for, as you note, permanent AF, but having been through the experience myself I would recommend it. Even if it doesn't succeed the procedure itself is much easier than you might think. The potential reward definitely outweighs the effort.

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It is important to recognise that ANY and ALL treatment for AF is only ever about improving quality of life but that ablation ( and early) stands the best chance of that. I agree with Pete that the forum is heavily weighted towards people who still need help or support for their feeling about AF.

You should also realise that there are at least a million diagnosed cases of AF in UK alone and that this UK based but worldwide forum has only about 10,000 members. Also that whilst there may be far more ablations performed in US than UK results in UK may be better as we have fewer EPs performing more ablations each. I stress that this is only an impression I get as I have no statistics to back it up.

I do also agree that if a person dallies until their AF has become persistent let alone permanent then ablation has far less chance of success.

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This is what my EP just said to me re early ablation. This was my third visit to him in 1 1/2 years, first visit he said no I was not a candidate for ablation. Now he is saying it my a fib progresses, I should consider ablation.

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Even if 100 people reply and say that their ablations have been a 100% cure, I feel that would not influence my decision not to seek ablation at the moment.

The variables involved in defining successful are so numerous as to make the outcome of ablation personal both to the patient and the EP who performs it.

Defining what is success with a condition as capricious, multi-faceted and poorly understood as some aspects of atrial fibrillation are, would produce many answers to many different people.

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I have to agree with you there - I was lucky 10 years ago and met a cardio who said - you can have an ablation but I would doubt if you would be better off than on Flecenaide and will probably end up on that any way - I was also lucky that the 2X50mg works for me and I have had few episodes - on the other hand if this hadn't worked I would probably have gone down the ablation route if nothing else worked - I think it all depends how badly you are affected.

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Yes, your last words are the key to how any of us cope. As far as I am concerned, anything which allows me to live ‘fairly normally’ is a success. Of course, ‘fairly normally’ is open to interpretation too.

For me, a successful ablation would be something which gave me back an acceptable quality of life even if it meant taking Flecainide as well.

I long ago accepted that my AF will never go away and I notice that my clued-in GP always refers to drug therapy and ablation therapy, never treatment.

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Hi Haverhill 88 - I have created many posts similar to this one of yours and had lots of interesting responses. I've had three ablations, but still have AF. I must say though that I'm so much better now than I've ever been and to be honest I think that's because of the Flecainide medication I take. Also I'm not as fearful of AF as I used to be, that's thanks to this amazing forum.

I have to say though that before I had any of my ablations, if I walked up a steep hill my heart would absolutely bang in my chest. I had no idea that other peoples hearts didn't do that. My first ablation stopped it from happening, but my AF attacks lengthened and I spent quite a few weeks in hospital.

My second ablation did nothing at all and my symptoms worsened and my EP said there was nothing more they could do for me.

Then suddenly out of the blue a few years later I was offered a third ablation. I think I was a good candidate to try out a new piece of equipment they had created. I felt well immediately afterwards, but because of more attacks where I took Flecainide as a 'pill in the pocket', which worked for a while, I then ended up taking Flecainide constantly and I think this medication has helped greatly.

Are ablations successful - I really don't know!! Perhaps for some people they are. I've been told again by my EP that there is nothing more they can do for me.

Jean

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Hello Jean

As you know I am a bit of an exception as I have had 7 ablations. I and my EP took a don’t give up attitude. For me it was because my symptoms were so bad when in AF.

I have now only had one 5 hour episode since April 2017 and that was 2 weeks ago. This is notwithstanding the fact that I was in Atrial Tachycardia >120bpm from May to August 2017 when I had another ablation for the AT.

Whilst I still get Ectopics, still take Flecainide daily and used it as a PIP 2 weeks ago, my QOL (regarding my heart) is better than it has been for probably more than 10 years.

Sadly I have a hernia for which I need an operation and due to a complex catalogue of administrative errors by the NHS since it developed in December, I have just been put right at the back of the queue. My QOL associated with this is not so good.

Pete

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I don't agree that the forum is full of negative ablation results. We do get euphoric posts - even though it's surely tempting providence to be saying 'Hey, I'm AF free' - and a number of people no longer contribute as they have moved on. Some look in once in a while, usually on anniversaries.

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Personally I do come here less since my ablation. I suppose there is less need for information since I currently no longer suffer from AF.

I had persistent but largely unsymptomatic AF and A flutter for about 18 months. In sept ‘16 I had an ablation at Harefield Hospital. I’ve been completely AF free ever since and I’m back living a completely normal life. I’m back running and take no medication.

Will it continue? Who knows. There are no guarantees in life. I’m making the most of it while I can!

Personally, i can’t recommend it highly enough.

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Great post. I've had ablation 5 weeks ago and all good so far, I would recommend it. I'm running, cycling etc and hope this will continue af free for the future.

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That’s great news! Long may it continue.

one thing I would caution against is doing too much too soon. I read a lot about recovery before my ablation and decided on a cautious approach. I did no exercise other than walking for 3 months after the procedure and then resumed running very very slowly. I friend of mine went back to cycling almost immediately after his ablation and his results have been far from perfect.

Of course this might all be a coincidence but I certainly think a cautious approach to returning to exercise can’t hurt.

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I have had varying degrees of AF over the last 10 years but it has got worse in the last 4 but was only offered ablation last year in March and jumped at the chance, a year later and 3 months of abysmal quality of life I have got my letter for pre-op assessment, so I am looking forward to getting this op done and will let the forum know of my progress good or bad.

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I had af for ten years before I felt it was really beginning to affect my everyday life. I was taking 300m of flecanaide and 240 of verapamil a day. Although I had no side effects af did break through every so often. I wanted to stop or cut down all the pills. I ended up having 3 pillows at night to keep me more upright in bed, was careful what I ate in the evenings, breathing exercises etc. I had an ablation last October which I was terrified of but it was no problem and i would have another if needed in the future. It has been wonderful to be able to sleep well with one pillow and just feel so much more.relaxed. I am very slowly reducing my pills. No af. The only thing I do get is eptopics. So far so good(fingers crossed!). They say the earlier you have the ablation done the more likely it is to be successful. I think I have held back from writing on the site earlier as I feel I might tempt fate having had it done 6 months ago.

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I was diagnosed with PAF in 2014. Consultant did not recommend an ablation, he preferred the medication route. Saw an EP in 1017, he said i was a prime candidate for an Ablation. I took his advice and here i am 12 months later AF free but for one episode just three days after the procedure. Needless to say I am pro ablation.

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Can I ask how old you are as I feel 5 years after diagnosis and just retired I have missed the boat. I have Paf fairly well managed on flecainide and bisoprolol but had a spell at Christmas through having a chest infection and latterly taking prescribed medication for my stomach. Regards Chris

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I have had 2 ablations. Im very happy with the results. The first one was fine, but I was left breathless, the 2nd one sorted it out. :) I would not hesitate to have another.

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I waited four years worrying about having an ablation until my PAF was lasting 24 hrs on 24 hrs off and getting worse. I wish I had not waited all that time. I had my ablation 6 weeks ago which was very easy after all my worries - and after a few bouts of racing heart i have had only one one hour episode in three weeks and my EP is confident that is just the heart settling down. Early days but I would be up for a second if it were needed.

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I am happy to shout out as many times as people want "I have had a truly successful ablation and I want to share my joy and delight with as many people as possible in order to spread hope and encouragement to folks thinking of having the procedure."

Mine was simply life changing.

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G'day Mike 11...Pleased indeed that you have had a truly successful ablation and for your sharing the positive news with everyone on this site...questions please ..what type of afib did you have and how long since you had the procedure have you been in sinus rhythm.

.

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Afib was random, appearing as a result of my heart attack and bypass surgery. It was never continuous but definitely getting progressive worse so I had the cryoablation four years ago and apart from two AF attacks caused by flu viruses which decided to ignore my flu vaccination, have been in sinus rhythm ever since. I do get the odd etopics, but that is often down to my lifestyle, such as recently throwing myself at >50mph down a 7km luge course in Switzerland. Probably not recommended by my EP but I did give my heart six months to recover after the procedure.

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Thanks very much for your thoughtful and encouraging response.

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I had persistent afib and had an ablation on 11/30/17. As of the 1st of March, I have been completely off any medications and have been mostly in sinus rhythm since then. I was on Amiodarone until then. My main triggers seem to be alcohol and work stress. I can't control the work stress, but since my procedure i have cut my alcohol intake to minimal amounts, maybe two drinks a week as of late. Prior to the procedure, I had a drink every night and multiple on the weekends.

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You must be a young person with a strong heart, especially since you are even off an anti-coagulant. I, old, had a second ablation for perimitral atrial flutter at the same time as you. Rather than coming off Amiodarone, it was increased so that I cumulatively was taking it for nine months. I asked for a change and started Flecainide today. So, it's the end of March and I am still going in and out of arrhythmia compared to your mostly sinus rhythm. good for you. I hope your good health continuous.

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I had my first ablation 6months ago and I am AF free for now it has improved my life dramatically dont regret having it done and if I eventually have to have another one I will as the difference it has made to my life is amazing ,just weaning myself off bisoprolol gone from 10mg now down to 1.25 and then off them forever hopefully,not been easy but done it gradually with the help and advice from my cardiologist at Barts,hope this helps ,regards Brenda

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Hi Haverhill. I second all the responses on a positive note. I have had af for 15 years. Had my 3rd ablation aug of 2017. I am still on flecanaide and bisoprolol, but have been free of afib for the first time in 15 years, except for the odd ectopic. I hope it lasts, however even so it has been worth it to have these last 9 months without the horror of afib. I hope my EP will start to take me off meds when I see him in June. I have my life back , WOW, is it great.

I will live my life at its fullest while I can.

I have had brain surgery 15 years ago when I was 60 yrs old, so I appreciate being alive and have all my marbles and mobility.

I bounce back to life and appreciate the doctors and staff in Canada that have helped me so much.

They are my hero’s. Not the so called celebrities ( sports, movie stars, etc. )

This forum has also been a hero for me. Thank you all!

Marney.

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Congratulations to your positive medical view for the treatment of arrhythmia in Canada. As a fellow Canadian, I have had the opposite experience from you regarding arrhythmia: my GP waited for a full year for me to get into persistent before he referred me; the useless cardiologist appointment took almost two months; the wait to the EP took another three months ( would have been five months but I complained to the manger of the department about my persistent condition); the actual ablation timeline would be another three to six months and beyond, and a possible permenant arrhythmia. Facing more damage to my heart in persistent condition, I opt for Bordeaux who took me in one month's time (at my expense, of course) and a second ablation four month's later, also in Bordeaux. Due to the severity and type of arrhythmia I had, I am now facing a probable third ablation.

I do agree with you that brain surgeons and electrophysiologists are heroes regardless of what country they practise.

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I think it has been said already. Most people don't even know this website exists. So even if thousands of people a year have successful ablations, they are not going to post it online. The few people who find their way to this website are probably people who have experienced bad health for a while, and through persistent searching online, we're able to find this forum. Most people who have Afib are also older. And let's face it. Older people are not as tech savvy.

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I ‘m old and tech savvy. 😜

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😂. Me too, Im old and tech savvy enough

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I’m 75 and I could still out-tech and out-program youngsters of the modern age!

Also, I had never been in bad health in my life until AF came along.

PS I’m ONLY 74 - so maybe you’re right - and I’m doddering.

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Sorry. Didn't mean to offend. Just meant to say that older people don't usually spend as much time online as the younger generation. But there are thousands of people around the world who have ablations each year. And there are only a couple hundred who regularly check this forum.

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Hi All - I had my second ablation at The Heath hospital in Cardiff about 3 weeks ago. Over the past few years this site has been a massive comfort to me after 20 years plus of problems with this rotten AF. I have been back to work for 2 weeks and at the moment if I could bottle and keep the way I am feeling at present I would. Fingers crossed it has worked 🤞🙏🏻this time!!! I spent many years trying different drug combinations and wish I was offered the ablation route years ago. I will keep you all updated. Anyway enough about me I wish you all a Happy Easter 🐣 Cheers Rich

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Before my first ablation I was on the site all the time and got great encouragement. After 2 abalations I am living a great 70 year old life. I found the experience worth everything you go through. I agree that once you feel better you don’t come to the site. I am sorry about that. I found it an amazing experience and grateful I was able to get 2 abalations.

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At end of the day, we can speculate as to why people post or not, but without hard data, we really have no proof as to whether patients with a successful ablation choose to abandon this site or not. . It’s all speculation. The only way to know for sure is to identify everyone who has posted to this over the past few years and conduct a formal survey. My ablation worked out ok for me on the second try but I still hang around, read the posts regularly and post myself periodically. Let’s deal with the facts based upon real data as follows:

Studies have shown that first time ablations are successful about 65 percent of the time. Also the word “successful” is a misnomer as ablations are not a cure and AFIB often comes back within several years if not sooner. Many EPs considers an ablation to be a “clinical success” if it provides an AFIB free period for just a year or two and that does not even factor in potential long term side effects from ablations in their assessment of clinical success. Of course there are some AFIB patients that are lucky enough to go many years without a repeat ablation.

For those individuals with concurrent heart conditions (that are still eligible for an ablation), who are overweight, have high blood pressure etc, the clinical success rate of an ablation goes down to 50 percent or less.

Having a second ablation like myself increases the odds of “clinical success” by 15 percent to 80 percent or higher assuming the first ablation failed (ie AFIB never went away). Beyond a second ablation, the odds of success are individualized as some with significant scar tissue may be limited in the number of ablations they can have while others can endure many ablations with eventual positive results.

I’ve also learned that the farther away you are from your “successful” ablation, the more likely AFIB will return. I’ve been told by two EPs that the odds of AFIB returning increase 20 percent (cumulatively) per year after year 1. This means that for many (but not all ) AFIB can return within 5 years. It’s unclear whether staying on a minimum dose of meds along with a positive ablation result lengthens those time frames.

Let’s be honest, there can be real side effects followibg an ablation. While the procedure itself is relatively safe and has a fairly rapid recovery, the lingering side effects for many such as frequent and intense ectopic beats (which I’ve experienced periodically), chronic coughing and other issues reflected on the site are worth noting. Obviously, maintaining a good weight and healthy lifestyle (which I do) are critical in minimizing all of this

Finally and perhaps most important, while ablations can have great benefits, once you have had AFIB and even if you are now AFIB free post ablation, your stroke risk (albeit reduced) is still higher than the population at large. As such, I’ve chosen to continue to take Pradaxa (anticoagulant) even though my Chadvasc is zero to further reduce my risk based upon my dialog with my EP and some great advise and perspective from this site.

Bottom line:

Ablations can be helpful but is somewhat of a crude technique when you think about it considering you have to damage the heart by burning or freezing portions of the heart to create scar tissue to fix the AFIB problem. Hopefully, over time the procedures will become more refined with improved and lengthier success.

Ablations often have side effects that should seriously be considered especially if you are elderly or have other health issues.

Ablations are not a cure even if deemed temporarily successful. However, in my case, it was worth it as I am now AFIB free and have a reasonably active lifestyle, but I also recognize that Mr. AFIB could rear his ugly head at any time. I choose not to worry about that and enjoy each day AFIB free.

Still, given all the negative implications, noted above, on balance, I think it was worth it for me It’s an individual decision for everyone

Sorry for the long reply

—————

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I agree with a lot if what you say but I still firmly believe that those who have had a “successful” ablation would not be seeking out our forum.

All over the world there are Cath labs and EPs whose sole purpose is to carry out ablations. These would not exist if ablation was not deemed to be the best option for many.

Pete

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Thanks for replying. Amazing how much time one has when waiting for a connecting flight in an airport. I agree that someone who hasn’t been on this site before and has had a successful ablation wouldn’t likely seek out this site or post. My point is that there are likely some individuals who had a positive ablation (and posted to this site previously) that might still be viewing the daily posts but choosing not to initiate a new post or reply to another’s post seeking guidance or comfort. I’ve gotten used to the daily emails and others might still be reading them too ( but not posting). At the same time, there are those that may have been active on the site pre ablation and have chosen now to disengage as you’ve noted. Hard to know the breakdown.

In any event, it’s all probably a moot point as I tend to look at the clinical data. Even if the results are temporary or partial for some and long lasting for others, ablations (despite its warts) still merits the the wide availability of the procedure. I expect that it will continue to improve over time.

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Very helpful info for those of us " on the fence post"

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Haverhill88, mine was truly successful (so far). Had increasingly frequent PAF. Struggled to prevent it occurring with Flecainide. Had an ablation a year later than I should have and it worked. Strangely I had lots of PAF after the op, but it settled down. Had it once a month for first 4 months. Had ablation in March 2016. Then after the healing process had two PAFs two day running in Feb 2017. Then a few in August 2017. None since. I take no medication. Only Flecainide if PAF happens. I was getting PAF every few days in the year before the op, until I worked out that low dose Flecainide worked better than high dose. In the two months before the op I was able to reduce PAF to once or twice a month by taking 25mg Flecainide twice a day. On 100mg twice a day it happened every few days!

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If one knew, say, the week after having an ablation, whether it was successful or not, then I'm sure many more people would be on here telling us. However, since some people wait 6, 9 or occasionally even 12 months before being sure that their ablation has been successful, I suspect that most of them have long since moved on by the time they're sure!

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It has only been 5 months this since my ablation but I feel it has been successful. My biggest problem is my fear/anxiety that afib/flutter will return. Yes I have had ectopics and once an irregular pulse rate but thank goodness for this site— I followed suggestions to relax slow deep breaths which helped and in a few hours my heart rate return to NRS. I believe most of us are looking for suggestions and advice on this site and that is probably why you don’t see postings about successful ablations.

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I’m inspired to write of my success with ablation.

For 4 years I suffered PAF.

I tried the drug route first.

The PAF progressed. Had an ablation August 2016. Stopped medication (except anticoagulants) since.

Life transformed. Since the procedure no AF nil, nada.

Wish I’d had the ablation at the beginning

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I have had 2 abalations. The last one has lasted now for 2 years. I am 71 years old and it gave me back my life. The best thing I have ever done for my Afib is an abalations!!!

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Also, I forgot to add....my first cardiologist who I went to for years told me I had to just live with my Afib and continue for life on pills. He wasn’t the one though that couldn’t walk from the sofa to the bathroom without feeling I had run a marathon. I told him I was changing doctors. He laughed and said good luck with that. Even if you feel good for a day or two it will fail. This was coming from a doctor who had given me 7 failed cardio conversions.

Yes, it took 2 abalations because I was in permanent Afib but that gave me over 2 years now of LIVING LIFE.....if it all ends tomorrow it’s ok because I had those years of a quality of life.

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