I have PAF. At the moment nobody has suggested an ablation, but I just wondered at what point this is considered? Is it if/when the PAF becomes permanent, or just when the Afib becomes intolerably annoying? Also, if you do get permanent Afib is this something you are constrantly aware of, or is it eventually screened out by the brain?
Criteria for an ablation: I have PAF... - Atrial Fibrillati...
Criteria for an ablation
Many EPs believe that early intervention by ablation stands the best chance of a successful outcome long term. In other words before the heart gets too used to being in AF. Permanent AF may not be as symptomatic as the body does get used to one thing but is far more difficult to ablate. It is the switch between NSR and AF and back which most people find distressing.
One reason for trying cardioversion is to see if patients do actually feel better in NSR in which case ablation may be a good way forward but for those who are asymptomatic and in permanent AF the the risks may outweigh any benefits.
One must not underestimate the benefit of life style changes. Weight loss, aiming for a BMI of less than 25. reduced stress. No alcohol. a reduction in meat based and processed foods etc have all been shown to be very helpful in reducing the AF burden and no treatment will help unless each patient takes responsibility for themselves. Good hydration at all times is also vital.
My own view is that if you are offered ablation (an expensive procedure here in UK) then one should take it BUT remember that it is only part of ongoing treatment and may need to be repeated. It is also NOT a way out of anticoagulation as for most people with a suitable Cadsvasc score there is no long term research to show that it removes stroke risk.
Thanks for this very informative reply.
Having dealt with AF for 11+ years now and had 2 ablutions and with hindsight - first do everything you can to meet the lifestyle criteria as a FIRST line treatment using the 4 Pillars principle - good nutrition - it’s not about diet per se but ensuring you absorb all the nutrients your body needs and you need help and support of a good nutritionist and tests to personalise for you. Good sleep - BIG correlation between sleep and AF. Manage stress - again BIG correlation between stress & AF. Exercise - don’t underestimate the value of DAILY exercise but don’t overdo things either. There is a big correlation with endurance atheletes and AF.
Only thing I disagree with Bob about is the alcohol - the occasional social drink - if it doesn’t trigger AF for you - is ok.
Once you have achieved all that and still have AF - then start thinking about drugs or ablation. Whatever happens the lifestyle changes will help you cope anyway.
I take no drugs, the side effects are just too dangerous for me.
Best wishes CD
IF is a big word CD. I often have a small glass of wine but I am very aware of what it can do to me and if I think that today is one of those days then I don't touch it. The problem is that once you say something is OK in moderation there will always be those who take your advice who really should not.
When I was diagnosed I was told “a lot of people find that giving up alcohol helps their afib.” I said that I would find it undesirable to stop completely , but would cut down. My personal target is 10 units per week, which I have yet to a achieve (currently it’s more like 18 units). Basically, I would be ok as long as I could have a couple of drinks on social occasions- othewise I would feel a bit of a social pariah. That said many of my friends are not supposed to drink much for different, non-afib medical reasons. We are mostly in our late fifties/early sixties age group but have known each other since boozy university days and tend to take a gung-ho “you only live once” attitude. That doesn’t mean I don’t take this stuff seriously however. At the moment alcohol doesn’t seem to be a PAF trigger, so this tends to make me a bit complacent.
I am very aware that Afib isn’t static and the situation could be different in a year or so.
And therein lies the problem I have witnessed for several friends in my social circle who continue to drink daily when they have AF and want ablations - at least 3 to my knowledge.
Changing life long patterns and habits is really, really hard and you need the support of your group for you all to change. It took me some time to get used to be the only non-drinker and frankly I didn’t much like how they behaved when they had been drinking and I hadn’t so I changed my friends, but I do find that socialising=drink is SO established in our culture that sometimes to feel ‘part of’ it is easier to say yes. What I do is either drink very, very slowly, water it down with sparkling water, drink plenty of water with the alcohol anyway and stop drinking at least 3 hours before bed so it doesn’t affect your sleep. Every glass of wine takes an hour for your body to metabolise so stick to the no more than a glass an hour rule and it really helps.
Not suggesting you change your friends by the way!
I so agree with you. I had to give up all alcohol as I was determined not to have this affect my afib. It was hard socially at first but friends just accept it and I could care less now. Each person has to make their own decision and be comfortable with it. I am completely comfortable socializing with a non alcoholic drink. Took a while but haven’t thought about it till I read the post.
Can we really be so prescriptive? I do think it is an individual decision. As you know there was a time I couldn’t even take a sip of alcohol without AF starting but can now enjoy a glass or two without consequence. But obviously I’m not advocating binge drinking or taking more than an occasional glass of beer or wine.
If you are a regular drinker, with regular episodes I guess the only way to find out is to abstain for a while and see if it affects the AF.
I’ve also changed my mind about coffee, not tea, coke or energy drinks - but a good cup of organic coffee, freshly made seems to really help me generally.
Interesting CD. I am noticing that drinking seems to be as important to some people as over exercise is to others . Maybe because I grew up in a family where dinner= a glass of wine even when as young as 12 that It really has little or no importance to me. Add in always being the driver if we go out and I will not get behind the wheel within 12 hours of even a small glass of wine and I find it really isn't worth the effort most of the time. Having shares in a vineyard means we always have wine here so should I wish to I can. At home!.
Luscombe's Sicilian lemonade works for me.
Thanks for your reply - also b informormative.
In my case, I raised the possibility of ablation with my cardiologist, having read about it on this forum. I discovered that he was - and still is - not in favour of ablation for AF. Had I not asked about it, he would certainly not have raised the topic.
I saw an EP and had long discussions with him re ablation. One comment he made was that permanent AF isn’t as bad as PAF as we get used to it. (I didn’t feel comforted by that!!). EP advised me against ablation at the moment and I decided to stick with Flecainide whilst it gives me the quality of life I want.
From those who have posted here ablation sounds quite an ordeal with a roughly 50% chance of success on the first ablation and , perhaps, worse symptoms immediately afterwards. I agree with your choice to opt for the medication.
The problem each of us faces is that no one size solution suits all. It really is a personal decision, advised by the best EP we can get to.
There is an old saying "When the pupil is ready the teacher will come. " When your QOL is so bad thanks to AF you cant wait for that ablation! Do remember that few successful candidates stay here as they no longer need us so this forum will be heavily weighted to the problems. I'd have another tomorrow if I needed it.
How long do you wait between ablations before you decide to have the next one?Did you ever get ectopic or an irregular heart beat post ablation?After 2 months heart rate is irregular and have ectopics now but rarely A Fib.I am only taking atenolol 12.5 mgm and want to wean off this is well.I have insomnia and get anxiety even at this low dose.See my EP/cardiologist end of Oct.
I still occasionally have ectopics and short runs of tachycardia. I waited a year between each of my three ablations. In my view anything less is foolish as it can take at least six months for things to settle down after one and many people are still improving up to nine.
At my very first meeting with an EP (at St Thomas’) I was told it was my choice- Meds route or ablation. I opted for ablation. This was done in November 2013. I had lots of arrhythmias etc for about 5 months but gradually all settled down. To date I am AF free so grateful for every day of normal life.
My EP was of the opinion that ablation was at its most successful when carried out at an early stage.
The interesting question here is whether the Afib settled down because of the ablation or whether it would have settled anyway. Were the doctors convinced it was the ablation?
Absolutely. I was having approx 5 episodes a week, lasting 5 or 6 hours. Very fast and very symptomatic. I was on bisoprolol whilst on the waiting list and felt very tired and breathless. I was not keen on meds for rest of my life so am delighted with result.
I know it’s a horrible dilemma and a difficult decision for everyone so good luck on your journey whatever you decide.
Hi I found your comments encouraging, as I am booked for an ablation in Oct. I have concerns and wonder if I'm doing the right choice or not. I am 70, progressive AF for 15 years, haven't had a drink of alcohol in 40 years, (some will say that is my problem). I walk 5 miles a day and try to stay healthy, diet etc. I am on Bisoprolol which I would love to get away from.
My last episode, 2 in a week, was in May. The episodes are getting much worse, lasting longer, and the last one they gave me the shock cardio version twice which didn't work. That is when I surrendered and agreed to an ablation. I hope it works.
Very similar to me except that I had PAF for nearly 25 years which was gradually getting more frequent and of longer duration. Cryoablation worked for me and now AF free for over three years. A new lease of life for me.
Peter
Hi Sam the criteria for an ablation as I understand it are the suitability of the patient (eg age,the length of time they have had AF and their general state of body/health) and that the use of medication has failed to control the symptoms of AF to give a good quality of life (QOL).
I have turned down the offer of an ablation to treat P-AF because I feel at this time medication and lifestyle change are providing me with a good QOL and I do not yet wish to go down the path of no return which might lead to a long list of procedures or leave me with a worse QOL than I am currently experiencing
I also feel I was offered an ablation by a nurse (to be performed by a EP/cardiologist I have never met ) not because it was the most suitable course of action for me but to push up the number of ablations in my nearest large hospital which has just started to perform them . Reading the small print in an article about the ablations, it stated if the first one fails they don't do second ones, they have to be performed in another hospital over 100 miles away.
Ablations clearly suit some people very well but I would not wish to rush into having one and I would want it to be performed by an experienced EP with a trained supporting team.
I had an ablation before trying medication. It was offered at my first appointment with a cardiologist a few months after a diagnosis of tachycardia. He was a locum and happened to be an EP. The first time I heard AF mentioned was immediately after the ablation during which it had become clear that my initial tests had not revealed the full picture.
Hi Samazeuilh, please don’t assess the success of ablation by the stories here as many successful people don’t hang around on the forum. I’m one of the lucky ones who had a (so far) successful first ablation a year and a half ago. I had infrequent but extremely symptomatic AF episodes resulting in trips to A&E with heart rate well over 200. After doing some research I asked my lovely GP for referral to an EP for consideration of an ablation relatively quickly after diagnosis when beta blockers had really bad side effects. My EP, Professor Gill at St Thomas’s in London, quoted 80% success rate for me, I think as it was quite early in my AF journey. I have my life back (with the help of lifestyle changes too) but would have another ablation without hesitation if needed. I know some others are not as lucky as me, you have to take into account how much the AF is impacting on your life in making a decision. But it is certainly possible to be considered for ablation at an early stage, and my understanding is that the success rates are better then too. Still it’s not something to be undertaken lightly. Best of luck with whatever you decide.
Val
Thanks for your reply. Is it possible to opt to be treated at St Thomas’ as my local hospital is not considered to be very good? A friend of mine who knows a retired cardiologist in the US was told that it was of key importance to have the ablation carried out by someone (or a team) who had done the procedure hundreds of times with a high success rate- which seems to have been the case with you.
You have the right to ask to be referred to a specialist of your choosing but normally need the agreement of your GP who will then write the referral letter. Do your homework and look at the stats and ask pertinent questions.
You will find a list of AF specialists on the AFA website.
Look up Professor Schilling at Barts and London Bridge, he publishes his results on line, so you can see exactly what your chances are.
Presumably you mean NHS treatment. If you’re in England the short answer is ‘Yes’ :
Good to know. My local hospital has been on special measures until recently and is not confidence-inspiring. Thanks for the info.
A slightly longer answer is yes, but if your GP isn’t up to speed enough to know where best to send you, do your own research. My local hospital in Kent was in special measures, had a cardiology department but no EP so I wasn’t keen on being seen there. My GP, after doing a bit of his own research, found that St Thomas’s had links with the William Harvey Hospital in Ashford so referred me there. I had all the usual investigations in Ashford, the results sent up to Professor Gill at St Thomas’s - I then saw Prof Gill himself in London (a lovely man) and he put me on the list. I don’t know where you are but if in Kent it might be worth checking this out for yourself.
I had PAF since Sept 2015. My AF was fast (165 resting) but I was asymptomatic. I initially was lightly rate controlled with 120mg verapamil daily such was reduced to 60 mg. I also found that running in AF put me back to NSR after 7 to 10 minutes. So I did this for approximately 11 occasions in 20 months. Unfortunately after this time the running trick stopped working and I spent the best part of 8 days in high rate A Fib ( up to 190bpm). The AF had progressed and developed for the worse. I was cardioverted eventually by flecainide infusion in the CCU of my local hospital. I was put on a much more intrusive drugs regime of rhythm control flecainide 2 x 50mg daily and rate control of 200mg diltiazem. The side effect were progressively worse brain fog, poor memory, tiredness and exercise intolerance. It was horrible. At this point I started investigating an ablation which I had ( successfully so far) on the 29th January 2018. Unfortunately 9 days post PVI cryo ablation i developed atrial flutter which was very symptomatic, breathless with any movement and hr at 137 to 140 . I had to have a second ablation which I had in be right atria on the 26th February.
In hindsight I wish I had investigated an ablation much earlier as if I had had one i may have missed out a pretty horrible 9 months of my life. My understanding now is that " AF begets AF" so by having af makes you more likely to have it again. By dealing with the 11 episodes myself, which meant I did not discuss with doctors , so ablation did not get discussed. So what seemed like a good idea at the time actually caused me problems longer term.
All that said if I had been offered an ablation in 2016 I would probably have refused it! Again hindsight shows I would have been wrong.
My EP advised 65 to 70% success rate with the PVI cryo ablation.
Ps I blame the diltiazem for most of the horrible side effects rather than the flecainide, but I had to have the rate control to stop flecainide promoting a fast heart rate which I was obviously prone to anyway. ( I do not wish to put you off flecainide if you are offered it). I am pretty sure of this as when I came off the drugs flecainide was first 3 weeks before the diltiazem, but the side effects did not improve at all until I stopped the diltiazem..
Hi,
I take 2x100 Flaicanide and 2x25 Metropolole. I have these symptomes too “ brain fog, poor memory, tiredness and exercise intolerance”. I am very concerned with brain fog and poor memory. Do you guys know if these symptoms all revert back when you stop the meds after the ablation? I’m waiting about a year for an ablation in Canada.
In my case the brain fog and tiredness and a lot if the execise intolerance went after stopping the drugs. However I was very surprised that it was 4 weeks after i stopped the diltiazem that I got rid if the brain fog and memory issues. I was surprised it took so long as diltiazem is only in your body 36 hours or so after you stop taking it, but whatever it does to cause the side effects is not instantly reversed. I was quite upset first week when I stopped takiing and I did not feel better. I thought it was not the drugs after all and something else was wrong. However after 4 weeks I realised my memory was sharper and I could remember several things to do in a sequence and I largely stopped the irritating trait of setting out to do a task and forgetting what it was before I did it!. I was less tired and had more energy.
I have PAF but at present episodes are of very short duration. My EP said to monitor it and when it becomes more frequent, an ablation would be his preferred route. I was surprised at how lifestyle can affect how I feel. I've had 2 very stressful weeks at work and it made a significant difference to the frequency of my episodes.
Hi Samazeuilh. I have been Afib for about 4 years now . I did have good success with a few cardio versions however the last two did not work . I was on Amiodarone for a few months that didn't work so they took me off of it . They suggest an ablation and told me right out it didn't have a good success rate which was about 70% successful. So I had one ablation It didnt do any good . I could have more if I choose but I did not want to go through it again so I said no more . Saying all this I never felt too bad with A-fib and my heart rate always been between 60 and around 70 . Some time I get tired but I deal with it . I guess I am on Eliquis till I die . I dont like being on the blood thinner and some say ITs not blood thinner ,well what ever it is , anti quagulant (SP) but I have no choice. So this is my history . They seemed to suggest this as a last resort .After reading the forums here I learned some people have had several of these and I question if all this scaring of the heart is in itself any good for the heart . Any way I wish you well with this .I am in the US.
As I understand it that seems to be a problem. Scar burden increases with the number of ablations and kind of ablation strategy. I remember reading about scar burden of up to
40% of the total LA surface area.
Up to the point where the atria becomes dysfunctional. This is called " stiff atria syndrome". It can lead to right ventricle failure. Ablation involves substantial damage to the endothelium.
Here one conclusion for an extensive substrate modification procedure :
"Active LA function is preserved but significantly impaired and associated with ablation-related LA scar burden after multiple extensive persAF ablations" (Active Atrial Function and Atrial Scar Burden After Multiple Catheter Ablations of Persistent Atrial Fibrillation.
Nührich JM1, Geisler AC1, Steven D2, .........).
Hi Samazeuillh, I've had 2 ablations here in the States, done by 2 different EPs. The first one, in 2013, was successful in that the episodes stopped with the ablation. They started up again in 2017 after some stressful encounters with people who had been important to me. It's like my heart got shocked and away we went....
My second ablation was in Dec. 2017 and I'm still having episodes almost 9 months later.
Here's where I find myself with it all. I really wasn't afraid of the procedure at all either time. I was much more afraid of continuing feeling miserable and the impact of it all not just on my quality of life, but on my ability to keep a roof over my head. Those financial concerns may be different here in the States compared to the UK (?). It was a no-brainer for me, even though, at the time, I had no idea how much it would cost (they wouldn't tell me) and if my insurance would cover it. Turned out to be crazy expensive and insurance wouldn't cover it (over $100,000). It still amazes me that I remained AF-free the entire year and a half that I battled to get the insurer to pay. I did win in the end.
The second time, I worked with a highly-regarded EP at a high-volume practice. siliconvalleycardiology.com/ My guy basically just does ablations and has done thousands of them. It was a faster, gentler experience, I woke up feeling great, and 9 months later I'm still having episodes.
I've also worked with an acupuncturist/doc of integrative med for 2 years. He supported my getting the ablation, though he tends to be concerned about the practice in general for the impact on the body overall. He sees it as a band-aid and wants to help me heal the heart overall. I appreciate this, but really just want to make the episodes stop at this point.
If the financial factors I face now were different, at this point I'd probably have another one.
Though I'm still having episodes, I must add that I am in a drastically better place than I was 5 years ago with it all. I've made big lifestyle changes. There are significant ways I have felt better with each ablation. I don't at all feel that my health worsened as a result of having an ablation; it did actually improve.
For me, the worst of it all is the flipping back and forth between feeling really good and then being hit by an episode. There are financial consequences connected to the time that gets wasted when I feel like crap. If I knew it would be paid for and I had more of a safety net, I'd probably sign up for a third ablation, regardless of what my acup thinks.
What helped me was finding a highly recommended EP within a practice with skillful and kind people. I trusted him to do his thing. I probably wouldn't go somewhere where they haven't done many of them.
I think it's a matter of getting quite clear with oneself about the tradeoffs and, literally, discerning which is more painful - the status quo of the health situation or the fear of having an ablation.
Ablations aren't guaranteed to stop AF; I sure know this. But then there will always be ambiguity around this condition. The ablation might not work - but then again, it just might.
Hope that helps!
A factor which I place importance on when considering the 'Ablation or not' decision is the physicality of my body to overcome the invasive procedure i.e. any weaknesses/co morbidities, top lifestyle decisions for 6 months at least before, supplements, exercise.
Firstly take stock of the symptoms you have and how serious they are?
Secondly -- as others have said -- take a serious look at lifestyle and develop a healthy lifestyle (both what you eat and how much exercise you take)
Lastly ask (yourself) what are the benefits and what are the downsides of any action (ablation or medication etc.) Them make a decision. Remember sometimes doing nothing is the hardest but best thing to do.
In my case I have a healthy lifestyle and I eat well (for example I have NEVER drunk alcohol, tea, coffee; never smoked etc.etc.). And I have AF, which now seems to be permanent. For me switching in and out of AF was really tough. Whenever AF kicked in (which it did for 2-4 days at at time) I would get really down. When it was in NSR I was spending my life on a tightrope trying everything to avoid the next bout. I have no symptoms (see my other posts to find out more). And I do nothing except maintain my lifestyle and I see simply it as part of getting old (I'm 60).
I had several months of PAF b4 getting my diagnosis in Aand E. Then another several months b4 cardiology accepted it. But as soon as i saw the lovely Andrew Grace at Papworth after several more months, I was advised that ablation was the best treatment. That took another 10 months. But by then I had decided to take proper control, changed my diet to anti inflammatory meaning no grains no dairy, and several weeks AIP with advice and support from a nutritionist, plenty of fish and plant protein and loads of veg and salad. Second ablation shortly, 8months after first one. Initially scary procedure, but in practice quite ok. Just recently started flecainide as PIP. Is working fine. 4 pillars approach very interesting and I think it's the way to go. But don't rule out ablation, episodes are just too exhausting and debilitating. Oh yes, mindfulness practice also very helpful in slowing the heart down and reducing stress levels. As is exercise like walking. I've reduced biso down to 2.5, plus taking rivaroxaban 20mg. Also taking b vits, mag glycinate, omega 3, co q10, vit d.
Whatever else, do as much of your own research as you can, and get to see the clinicians you want ('ll got Dr Grace using choose and book) who you can trust not to be driven by big pharma.
I am female and 74, and PAF was the last of a series of inflammatory conditions which developed over around 10 to 15 years. No one in medicine made that connection and only the nutritionist took it seriously.
After being diag with PAF I researched and researched (knowledge is power) and actively sort the possibility of an ablation. I did not want medication. I read about the percentages etc, found this site and read experiences. My events occurred ever 5-7 days, lasting 24-36 hours approx. Made me lightheaded and very tired, but still able to function, so not as affected as some on this forum. Armed with an EP's name that I had researched I asked GP for a referral, and fortunately was offered a procedure at my first clinic appointment. This 3 months after diag. Had to wait 6 months for ablation as my INR would not come down. First ablation failed after 3 weeks and was able to be seen quickly and offered a second after a 5 months wait to see if my returned PAF, now more aggressive, had improved. It hadn't and 2 years on AF free, thank goodness.
Interesting replies to this, which I'm very grateful for, as I am now on the list for an ablation too. I have only had 4 episodes in the last 10 years, but it is clear that it is not going to go away and more importantly can only seemingly be put back into NSR by cardioversion. The last 3 episodes have been brought on by a short, sharp sprint (twice for a train, once after my son fell over). Flecinide as a PiP or via IV doesn't WORK (the latter especially disagreed with me, sending my heart onto all. Kinds of different rhythms).
I discussed an ablation with Prof O'Neill at St Thomas after my 2nd episode about 4 years ago, but the view was to wait and see how it progressed. After my last episode last week (again running for a train on the way into work), the cardiologist I saw immediately referred me for an ablation after speaking to Prof O'Neill.
In many ways I am glad it happened as my home hospital were pretty dismissive, saying that it wasn't so much of an issue now but would be later and to try and combat it via lifestyle changes alone.
I'm 44, reasonably fit but overweight and drink too much. Alcohol isn't a trigger but does raise my (already high) blood pressure and heart rate slightly, at least noticeably. So I know there is work to do there and am committed to cutting right down. Especially now I've been put on apixiban. I'd love to get away from Bisoprolol too as it does make me breathless.
I am apprehensive of course (mostly as I'm terrified of not being able to remain still enough... Reassurance here please if possible!), but mostly looking forward to the recovery phase and hopefully being able to exercise properly again and run for the odd train without panicking!
(apologies for the hijack...)
Found responses to your question very interesting. I was diagnosed with AF and a leaky valve while on holiday in Cyprus after retiring last year. Started on apixaban and bisoprolol but couldn't cope with the latter so stopped this after few weeks. NHS tests showed I had permanent AF. Had dc cardioversion in Feb this year and felt great but NSR only lasted a week! EP recommended no more cardioversions. Also not to have an ablation as only 50% chance of success. My main problem is tiredness. I am male and 67 years young. Only options appear to be more medications and/or lifestyle choices. Am fairly active with gardening etc but am increasing my daily walking and physical activity. Eating healthy food incl locally grown fruit and veg. Am 5ft 8ins and now 80kg. Lost a few kg and hope to lose some more! Like a glass of wine with supper but am cutting back here too. Despite all this an still experiencing tiredness from my permanent AF. Any comments or recommendations?
Hi Bigsweet, sounds like you are doing all the right things, exercising, losing weight and cutting down on alcohol. Well done for that. Listen to your body and rest as much as you need to. I would be tempted to go and get another opinion from doctor/cardiologist/ep regarding the ablation as it may be the best solution for you. At 50/50 it has as much chance of working than it doesn't have. Maybe all the lifestyle changes you have made will have increased the ablation working and the odds will be better?
Have you been told that there is any underlying heart disease, ie is the tiredness definitely the result of the Afib?
Thanjs for your comments Sam. I am not sure on this but know both my AF and leaky aortic valve are causing my heart to beat and pump inefficiently which results in tiredness and fatigue. The dc cardioversion was tried first as the AF is a big cause of this. However I will ask on 14 Sept if there is any other heart disease that could be causing this tiredness.
You might find the following useful from Medscape. medscape.com/viewarticle/89...
Happy reading, enjoy the numbers and good luck.
Thanks Bennie Have started reading this article which is very informative! This is broadening my understanding of AF causes and treatment strategies and will be helpful in my conversations on next visit to BHI on 14 Sept.