I have permanent AF without obvous symptoms... - AF Association

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I have permanent AF without obvous symptoms - should I take up an offer to have catheter ablation?

small_boat_sailor
small_boat_sailor

My first post here. As my profile says, I have had permanent AF for a long time but it is without obvious symptoms. I dont seem to have the kind of problems that many of those with AF suffer from - I have no trouble climbing stairs or with other activities of normal living. I have been running most of my life but I would say that my running ability has declined, particularly in the past 2 years or so, I wonder if this is just the effect of aging, the effect of my AF or a combination of the two.

A catheter ablation had been considered for me but it was thought that this alone was unlikely to stop my kind of AF so just a few days ago, after a very long wait, I was admitted to hospital for a surgical hybrid ablation, with a likelyhood that this would need to be followed by a catheter ablation a few months later. I was lying on a trolly in the anti-room to the operating theater and had been given the first part of the anaesthetic procedure when the surgeon asked me about how my health had been recently and I told him that I am still pretty fit for my age although I am now really struggling to run up hills. He said that in that case he was unsure whether the risks of the procedure he was about to perform justified the possible benefit. We had a conversation during which he said that catheter ablation techniques had improved since the time that surgical ablation was first sugested for me (i.e. over the past three years) and that a catheter ablation, or possibly two catheter ablations separated by a period of a few months, might have close to the same chance of curing my AF with much lower risk of stroke or other complications than would the surgical procedure. The decision was for me to make but he was clearly pointing me towards that route. He then said that since I was already about to go into the operating theater he could, there and then, give me a cardioversion which would probably stop my AF temporarily, perhaps for a few days, so give me an idea of what life would be like without AF. I could then decide whether I wanted to have the catheter ablation or just forget about any treatment other than the regular medication that I have had since my AF was diagnosed. So I had the cardioversion and am now out of hospital and (temporarily) in sinus rythm. I feel great but I was not so bad before, its really hard for me to assess just how much benefit I have from being in sinus rythm. One point is that as soon as I came into sinus rythm my resting pulse dropped from around 70+ bpm to around 60bpm - that's with no change to medication or anything else. Its actually dropped even further since then, probably because I have been put on stronger rate control tablets. As an engineer I cant help thinking that it must be jolly good if a pump can be modified to do the same job as it used to do but running at a lower speed, but I am not sure how that argument would stand up to medical scrutiny.

I am in a bit of a quandry at the moment because before leaving the hospital I met the consultant who specialises in catheter ablations and he is going to phone in a few days to ask if I want to go ahead with that procedure. I dont know how to answer. I suspect that the benefit I would get from curing my AF would be relatively small, hard for me to quantify it, but I suspect that it would be less than most other people with AF would have from their AF being cured. But since the risks of the procedure are low, even a small benefit could be worth having. On the other hand I have the thought that if I have the procedure I might be denying it to someone else whose need is greater. I spoke to my brother, who happens to be a retired surgeon, but not a cardiac specialist, he told me not to think like that because its not a patient's job to decide who should be offered a procedure. Would be grateful for any thoughts.

64 Replies
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You are no doubt going to get a lot of replies on here.

I have had perm. Afib for in excess of 10-12 years. Never been offered an ablation because i guess I am otherwise fit and have only very minor 'comorbidities'.Come to that never had a cardiovervion either....turned it down when they offered it once and they never asked again!I can walk well and quite fast over short laps and also up stairs. i am pretty energetic at 80 plus .As Bob would/will say on here. It is all about your quality of life.....in my opinion.If it is pretty good now do not mess!

Two important things that might enable us to help you decide on the route to take are your age and what medication you are taking?

Jean

Jean, I am 69 years. The medication I was taking up to the time of my recent hospital visit was as follows:

Edoxaban 60mg tablet one each day, morning

Atorvastatin 40mg tablet one each day, morning

Bisoprolol 1.25mg tablet one each day, morning

Levothyroxine one 50 microgram and one 25 microgram tablets each day, morning

On leaving hospital I was told to stop taking Bisoprolol and instead to take Verapamil 40mg, two tablets each day and Flecanide 50mg, also two tablets each day.

I would add that it is probably unusual for a patient to have a conversation about treatment a few seconds before anaesthesia, but the surgeon did applogise profusely that we had not had the discussion earlier. I gather that there were admin problems, probably to do with the great stress that the hospitals are working under at the present time. I would also add that ever since my diagnosis this surgeon and the associated medics have shown me nothing but kindness and have done all they can to help me. Three years went by between diagnosis and my getting to the operating theatre but this was due to some special reasons that I probably don't need to go into here.

My first two ablations made my AF worse, but I was very symptomatic right from the start. An attack would leave me drained for days. When I saw the title of your post my first thought was 'You lucky thing'. I'm also amazed that you have been offered an ablation so easily. After my third, which did help, although I still have AF, I was told some people are just not helped by them and I would not be offered any more. My AF is now constant like yours and to be honest I feel so much better this way rather than having random and debilitating attacks.

To my mind having an ablation is a gamble, some people find they help and for others it doesn't. Is it worth the risk for you? Also the procedure damages your heart as it causes internal scarring. I was once told that this can make the heart a little stiff in its working!

Do you know if the tablets you're taking for your heart are making you feel any better or worse and what effect do they have on your heart? Do they actually slow your rate or correct the rhythm? I guess you know that the medication you're taking can make you feel a little lifeless?

Jean

What is your heart rate when you are in AF?

Physalis - My resting heart rate when in AFaveraged about 75bpm, varying from about 70 to 80bpm. This was while taking bisopropol which I understand reduces heart rate so had I not been taking bisopropol my resting heart rate with AF would likely have been higher.

As I said before, when my heart went into sinus rythem as a result of cardioversion two days ago my resting heart rate dropped from 75+ to 60, to me this seems quite a significant and sudden change.

My AF was diagnosed in December 2016 - this was just by chance when I was in hospital with a skull fracture and had a range of tests during that hospital stay. The tests included an MRI scan that showed that at one time in my past I have had a minor stroke, but I was not aware of that. I have had a few variations in my prescription over the years since being diagnosed with AF. For a few months I was prescribed amiodarone and this adversely affected my thyroid wich is the reason that I am now taking Levothyroxine. I was also prescribed Ramipril at one stage.

Amiodarone damaged my thyroid too and I take the same dose of Levothyroxine as you. We had a local get together a few years ago for forum members and out of 20 of us I think it was 3 or 4 people that had had their thyroid damaged by Amiodarone. I hope you reported it on the Yellow Card website?

Jean

Jean - sorry to hear that Amiodarone damaged your thyroid gland, as apparently it has mine. When this was discovered from a blood test it was thought that the damage would not be permanent and that it might more or less recover within six months or so. However, it is now 20 months since I was taken off Amiodarone and presumably my Thyroid is still not recovered since it has not been possible to reduce my dose of Levothyroxine during the period since I stopped taking Amiodarone. I have regular blood tests to check my thyroid activity and based on these my Levothyroxine dose has been adjusted several times - it started at 25micrograms per day and is currently 75micrograms per day.

No, I did not report the effect of Amiodarone on the Yellow Card website since I was not aware of that website. I have now had a quick look at the Yellow Card website and I see that we are not the only ones who have been adversely affected by amiodarone, but I would need to study a lot more to understand how the adverse effects compare with possible benefits, so I will comment no further on that.

That's interesting. There was quite a discussion here a few weeks ago because I thought that AF always meant a fast heart rate. Mine went from about 60 in sinus rhythm to 140 when in AF so I couldn't understand why some people thought they were in AF with a normal, under 100 heart rate.

The answer was that I had AF with fast ventricular response, in other words the lower chambers of my heart were pumping at the same rate as my upper ones even up to 200. You must have AF with controlled ventricular response where your ventricles are going at a normal rate even though you have atrial fibrillation at a faster rate.

I found that bisoprolol only took my heart rate down by 10 to 50 in sinus rhythm and 130 in AF.

It seems that several people here are quite happy to be in permanent AF when their pulse is within normal limits.

To me you seem to be taking quite a cocktail of drugs. If you had an ablation and it was successful you could stop taking them all. I think that I would do it just for that.

BobD
BobDVolunteer

Up until very recently any treatment for AF was only considered to be about quality of life until a long term study of ablatees apparently showed slightly better long term outcomes.

As a great fan of ablation (have had four for different things) it might surprise you to see that I have doubts about the wisdom of such a procedure in your case. Your quality of life has been excellent despite the AF and as you say you have had none of the problems usually associated with the condition. Nothing is without risk of course, even doing nothing but do think long and hard about your choice and do not be pressured into making that choice. Sadly my last ablation actually exacerbated the problem it was supposed to mend and I now look like having to decide on maybe yet another at some point soon so I don't envy you.

As you weren’t on a high dose of medication for AF before the CV and even now aren’t taking a high dose, and your QOL seemed pretty good, my thought would be ‘If it ain’t broke...’ I’m wondering why you never had a CV before as it is usual to try that before more extreme measures, answer I’m assuming covered by ‘special reasons’. I don’t know what the effects of a ‘failed ablation for permanent AF’ are. If the result is PAF or lots of ectopics or a different arrhythmia then you are definitely better off as you are! Maybe a question for the EP who is contacting you.

Best wishes whatever you decide 💜

Buffafly - I avoided commenting further on those 'special reasons' I mentioned, mainly because it is quite a long story and I felt that my initial post here was already quite long. But, since it has been mentioned I will give brief details. Within a year of my being diagnosed with AF my consultant heard, or read, about a new way to carry out a surgical ablation that had not yet been used in the UK. The consultant thought that this technique was promising and was initially recruiting a very small number of suitable candidates for first use of this technique in the UK. He considered at that time that I was a suitable candidate and I agreed to be one of the 'guinee pigs'. However, there followed a series of difficulties, I think at least some of them beaurocratic difficulties, in introducing this new technique into this country as a result of which my operation was postponed three times and in the end I was admitted to hospital this weekend expecting to have the procedure done by the new technique but, unknown to me, the surgeon had by then decided to abandon attempts to introduce this new technique to the uk. So if my procedure had gone ahead this past weekend it would have been a more conventional surgical ablation. Please note that I am not medically qualified so the above is just my layman's understanding of what has happened, I may have misunderstood some details and there may be factors that I am not aware of and probably would not be able to understand.

Also in response to Buffafly, I did have two cardioversions prior to the third one I had last Monday, both these stopped my AF for only a short time, less than a fortnight, so I did not think they were worth mentioning in my long initial post. Each time my AF stopped my pulse rate fell significantly and I did feel good but I find it hard to quantify the improvement - I am aware that it is very easy to convince yourself that some treatment you have had has been beneficial - hence the beneficial effect often reported by patients who have had placebo treatments.

Yes, possible adverse effect from the catheter ablation proposed for me is something I would really like to know more about. All I have been told so far is that the techniques used have improved significantly, even over just the past three years, and the risks are now considerably lower than for a surgical ablation. I wonder if there is any relevant reading suitable for a layman?

Going by experience of others it looks as though you should possibly expect to have more than one ablation, another question to ask.

I think the risks have always been considerably lower than for a surgical ablation. Do they do them nowadays?

They probably meant that over the last few years the techniques have improved significantly and are improving all the time.

Physalis - Surgical ablation procedures are certainly used nowadays - I came within a matter of seconds of being given one on Monday morning. Right now I half wish that it had gone ahead since things would have at least moved forward. My consultant said that a surgical ablation would have only a 10% chance of success if it were the only procedure used but if a surgical ablation were, if necessary, followed by a catheter ablation a few months later, the overal chance of success would be 80%. The point is that the surgical procedure is from the outside of the heart wall, the catheter procedure from the inside so the two together scar the thickness of the wall. He said it is like turning a steak so as to be sure it is cooked right through!

Of course the above percentages can only be approximate, a lot presumably depends on the individual case. As for catheter ablation, when I first discussed this with the consultant close to 3 years ago he had at that stage ruled out catheter ablation for me since he did not think it had a worthwhile chance of success with my particular kind of AF. However, on Monday he told me that the techniques for catheter ablation had improved since our first meeting to the extent that he would now say that with possibly two catheter procedures, spaced apart, the chance of success would still be less than 80% but would be 'getting up towards that level'. I appreciate that all this is his best guess, the knowlege is developing and different patients react in different and unpredictable ways.

Has anyone here had a surgical ablation? I assumed that when people talked about ablation they meant catheter ablation.

Buffafly
Buffafly in reply to Physalis

John Miosh is one, and a couple of years ago a member had an experimental new procedure which didn’t go well. Maybe that was the type that was cancelled?

Well, the new procedure that I was expecting to have when I was admitted to hospital a little over a week ago is not going to be used again within the foreseeable future so no point talking about it.

Sorry, but we are all interested in new developments and so far haven’t heard of many. The new procedure caused quite a stir at the time as ‘our Afer’ volunteered as a guinea pig. And I haven’t heard it mentioned since.

I have just done a search for 'ourAfer' on this website and that search did not come up with a member.

Somewhere in this long string of messages I have already said that this procedure was a variation on a more established surgical ablation procedure which accesses the outside of the heart by minimally invasive surgery then thermally ablates tissue. Having at one time worked for a period of eight years in medical research (as a mechanical engineer, I have no qualification in biology or medicine) I am aware that new techniques are sometimes confidential so I do not wish to go into detail, and in any case I would not have much more detail to offer since I have simply trusted my doctors rather than asking a lot of questions.

I didn’t give his name 😂 You can’t find him because he left - he had a very anxious disposition and after the ablation didn’t work as expected (he had other arrhythmias afterwards) he fell apart emotionally. It was all very upsetting as we couldn’t help and don’t know how his story continued, which is maybe why I am in the ‘If it ain’t broke...’ camp.

I am sorry to hear of an ex-member of this group who had such a bad experience. Possibly I have just escaped from such an experience, I have no idea.

I am also in the 'if it ain't broke...' camp and for most of my life I have kept well clear of medics, other than the ones I was collaborating with in my medical research (research on artificial hip and knee joints and writing software for processing X ray images). However, there came a point about 4 years ago when I fractured my skull so I had little choice about whether or not to see a doctor. During the subsequent hospital stay, tests showed that I had AF, which I had not previously been aware of. I was put on medication and about a year later I had a meeting with a consultant who proposed a surgical ablation, probably to be followed by a catheter ablation a few months later. I trusted his judgement.

A few more months later my consultant sugested the modified surgical ablation which I mentioned in my posts here, and I agreed to be one of the first patients to have that operation in the UK. The operation was postponed several times, but I was eventually admitted to hospital just over a week ago. At the time of admission I was assuming that I would be having the new procedure but I learnt on the evening before surgery that it was actually to be the procedure first proposed to me, not the new modified version. I did ask the reason for the change of plan but did not get an answer at that point. I was still keen for the operation to go ahead, after all I had been waiting about three years for the operation, becoming keener to see something happen every time it was postphoned then subsequently re-scheduled. However, I did feel very strongly that I would like a simple explanation of why the plan for my surgery had changed.

So, lying comfotably on a trolley in the ante-room to the theatre, I asked the surgeon why the plan had changed. He told me that results from the new procedure had not been as good as hoped. That was all that I needed to know and answered my question, but I suspect the surgeon may have thought that my asking that question meant that I was not sure about having my operation. So he halted the administration of anesthetic (a catheter was in my wrist at that point but I was concious and I dont know what, if anything, had been administered at that point) and started talking about an alternative course of treatment using only catheter ablation rather than surgical ablation. At none of my three face to face meetings and one telephone conversation with this surgeon had such a course of treatment even been mentioned as a possible alternative to surgical ablation. The surgeon then went over the risks that I might be facing if the operation I was about to have went ahead. I am not sure why he felt it necessary to go through all that again at this stage since he had told me about risks on several previous occasions and I had done my own risk/benefit analysis as best I could and decided to accept the risks. I do have dark thoughts that possibly he wanted me to stop the operation simply because he knew that if the operation went ahead he would be operating with very questionable consent (as my brother, a surgeon himself, has explained to me) I can imagine that it might be easier for him if he could induce me to call the operation off rather than having to call it off himself. Maybe I am being very unfair in pointing out that possiblity - I suppose I do have a tendency to assume the worst when guessing what peoples motives might be. Then I was handed a change of consent form, filled in except for my signature. Even as I signed the form I was basically happy for the operation to go ahead but it seemed that the experts were pointing me towards a different route so, in a hopelessly confused state of mind, I signed the form and the operation was abandonned.

My main thought in the days following my discharge was a consuming anger at how things seem to have worked out. This anger has quite seriously affected my sleep. I know that this is irrational. We dont always seem to be able to control our own thinking, at least I sometimes cannot do so.

Before I was discharged from my brief hospital stay, I was introduced to a consultant who specialises in catheter ablations and he said that he would phone me before the end of the week to ask if I now want a catheter ablation or alternatively have no further treatment other than ongoing medication. He did not phone me back and I am half thinking that my best option might be not to chase him or make further contact with the hospital but simply to let the whole thing be forgotten. Time will pass, my anger at how things worked out will slowly ease, my AF will continue but I assume that it will remain asymptomatic and probably I will continue to enjoy a level of fitness that might not be as good as it could be without AF, but it would probably still be an above average fitness for my age, for at least some time to come.

Very difficult for you. I think I would want a fuller and honest explanation of why he ‘chickened out’ of doing the procedure. If it’s that he didn’t think the standard procedure would work for you now so it would be a waste of an expensive and risky operation then you haven’t lost anything. After that you could make a decision on the catheter ablation without agonising over ‘might have beens’.

Best wishes 🦋

Buffefly - I think you have a good understanding of my situation and I agree with what you say, having come to similar conclusions myself. Someone from the hospital called me yesterday to check I was available for a phone call from a nurse this coming Friday. The person calling me was underthe impression that the operation had successfully gone ahead and the phone call was to arrange a follow up with a nurse. I will wait till Friday when I can tell the nurse what happened and hopefully the nurse will sugest a way forward.

My brother (a surgeon) told me that there were irregularities of procedure during my hospital stay and that I have grounds for a formal complaint against the hospital. I dont feel that I want to make such a complaint, at least not at this stage.

Hi

There is really nothing to worry about with this procedure. Over the last fifteen years I have had it done three times and the procedure has changed massively over that time for the better.

I find it no worse than a visit to the dentist albeit much longer, with better quality of life an instant benefit.

I love running too and I am sure you will find a huge improvement especially those hills.

Good luck on whatever you decide.

Tom

I have permanent AF too, and still run, but can't do the hard/fast stuff either. I've never been offered ablation, but would jump at it, because of the long term risks from AF. (And to be able to run properly!)

whiteface
whiteface in reply to Jaws66

I'm not sure there are any long term risks for AF. It only seems to be a problem when other "con-morbidities" are present. This means if you have other (heart or circulatory system) problems AF will make them worse but if not then you're fine.

Check out my post on this topic "If you are fit and healthy -- how dangerous is AF? Maybe not as much as we've been led to believe..."

Hello, I have been in permanent AF for approx two years. Had my first ablation which lasted for a few days then AF returned. Last Friday had my second ablation which so far has me in sinus rhythm.

Also an Engineer, although retired, I did ask where the electrical disturbances are from which cause AF and why do they occur. Any engineer wants to know the cause, and not just to treat the symptom. There is no answer at present.

The only effect I felt whilst in AF was a little shortness of breath when climbing up an incline, but still allowed me to play golf three times per week. The beta blocker I am on, Bisoprolol, does make me a little shattered at the 18th hole.

My heart rate has returned to its previous level, 50/65 beats per min from 80/100 beats per min when in AF. As the heart is a muscle and basically performs a pumping operation, I much prefer it doing its job at a lower beat per min.

Unless you have underlying issues, I would go with an ablation every time

My opinion of course but your Cardiologist is the person to have the discussion with, albeit your decision ultimately

Best wishes

Dave

As the old saying goes "if it aint broke don't fix it", but take an anticoagulant of some sort as Afib can - and does (I know from bitter experience!) cause clots. Good luck

Ablation is to improve quality of life and yours seems pretty good at the moment. But also prolonged AF can cause changes to the heart making it less efficient which isn't so good. I suppose it depends how often you are in AF. Not crystal clear I am afraid.

I believe the terminology you want to use in terms of the state of AF is persistent, not permanent. Do you know how many months you have been in persistent AF? Since your surgeon mentioned possibly two, you have been persistent for quite a few months.

You do not mention why you were booked for a surgical hybrid ablation, but I do know that it is an invasive procedure, and, in my limited knowledge, not one done just for persistent AF. Personally, your surgeon is a hero not to go ahead and gave you a cardioversion instead.

Next, you talk about new technique that you were going to participate in , but which was abandoned by your operator, without giving the type of procedure. To my knowledge, the latest which shows promise for pulmonary vein ablation is Pulsed Field Ablation. However, this procedure is not perfected for those in persistent AF. Perhaps you could give the name of the procedure you were going to trial for.

Let us examine the heart if you have an ablation or not. Those that prefer not to have an ablation will say that the heart gets scarred and stiffens with ablation. Those that do have an ablation will say that once one is persistent, the heart gets remodelled more and more until the heart can no longer get back to sinus rhythm remaining in a state of permanent arrhythmia .

Now for some requested research. In terms of what happens to the heart when one is persistent:

afsymposium.com/library/201...

Do note how many rotars are formed relative to the time spent in persistent AF.

In terms of rate versus rhythm as treatment, the ATTEST trial is significant:

a-fib.com/2020-af-symposium...

In terms of the latest direction of treatment- EAST- AFNET 4:

medscape.com/viewarticle/93...

Personally, I have had three ablations with the first one at the six month persistent stage. I am now 16 months in sinus after the third. I did not have any complications after any of the three, and I always felt better.

cuore - Thank you for the links to literature - I have only just logged on here but will look soon.

Re terminology I have just checked on the NHS website and I believe that 'permanent' is the correct term for my AF since it means that I have AF all the time. 'Persistent' means episodes that last longer than 7 days (or less when its treated) but if your AF is permanent you dont have episodes - its just with you 24/7, possibly for decades. I know from my medical record and from my own heart rate monitor that my AF has been permanent from the time of diagnosis in December 2016 to the present, other than during short periods (less than 2 weeks) following cardioversions. I suspect that I have had permanent AF from well before diagnosis but no way to know for sure.

Anyway, I collapsed in the middle of last night. Felt slightly nauseus, got out of bed, went to the bathroom, suddenly dropped to the floor, maybe not totally unconscious but my body just went limp and I could do nothing to stop the fall. I was vaguely aware that I was falling and I heard the bump as I hit the floor. On the way down my chin hit something causing bleeding, but not serious. I lay on the floor for maybe half an hour, feeling quite badly nauseus at first but gradually recovering. Then I took a reading with my heart rate monitor which displayed a symbol showing that my AF had returned - so the effect of the Cardioversion I had on Monday lasted only a couple of days. The blood pressure was 112/86 the heart rate was 104 - this is a high resting heart rate for me even with AF present. Without AF my resting heart rate had been about 60, varying by only one or two bpm either way.

I arranged a GP appointment this morning. My GP seemed quite concerned about the collapse. She said that my collapse could be due to my recent change of medication or it could be due to the heart stopping briefly between being in sinus rythm and going back into AF. She revised my prescription to remove the Flecanide and Verapamill and reinstate the Bisopropol that I had been on until recently. She also got a nurse to take an ECG and this confirmed that my AF had definitely returned and she said that my heart rate was quite variable, so any one reading might not mean much. She said to wait until the hospital consultant calls me but to contact her again if he does not call.

As for the name of the alternative ablation treatment that i had been offered and had been awaiting for quite a long time but which in the end my consultant decided to abandon. I doubt that procedure has a name, perhaps it was too new to get an accepted name. I hesitate to say too much since it may be a matter still under discussion between my consultant and medical authorities. Probably my consultant would not mind this being in the public domain, but I dont know that for sure. I would say that it was a modification of a more established surgical ablation procedure - i.e. accessing the outside of the heart by minimaly invasive surgery then forming scar tissue where needed to block the transmission of the signals that cause AF.

Good for you for researching the types of AF. May I suggest you consult more than one site. Classification of AF has varied throughout the years. Formerly, there were two: chronic and acute. Also, permanent and persistent became blurred. The year 2014 solidified the classification into 4 types. The following site, updated August 10, 2020, gives succinct, comprehensive definitions:

ncbi.nlm.nih.gov/books/NBK5...

Specifically,

"1. Paroxysmal AF is when the episodes terminate spontaneously or with treatment within 7 days. But they may recur with an unpredictable frequency

2. Persistent AF is when the AF is continuous and lasts for more than 7 days, and fails to terminate spontaneously.

3. Long-standing AF is when the continuous AF lasts more than 12 months

4. Permanent is when AF is accepted and no further treatments are attempted to restore or maintain normal sinus rhythm"

This same site defines permanent as:

"Permanent AF: It is the type where a decision has been made to abort all therapies because the rhythm is unresponsive."

Thus, you were able to return to sinus rhythm via electrical cardioversion, granted the period was short. You are discussing catheter ablation to return to sinus rhythm. The former two reasons would eliminate "permanent" in my view. You have not accepted yet to remain in arrhythmia. Without acceptance plus unresponsive sinus rhythm, permanence is not applied.

That leaves persistent or long-standing persistent. You were diagnosed in Dec. 2016 , almost four years ago, with your arrhythmia being constant - no episodes. Rule out persistent which has an expiry date of one year, what's left is long-standing AF.

Nevertheless, arrhythmia definitions are fluid. The following study (July 2, 2020) makes the case that paroxysmal should be re-evaluated:

jamanetwork.com/journals/ja...

"In this study, patients with AF episodes limited to less than 24 continuous hours before ablation had a significantly lower arrhythmia recurrence following ablation. These results suggest that the current definition of paroxysmal AF should be reevaluated."

Whatever your choice, I sincerely hope things go well for you.

Cuore - you clearly have a lot more knowledge of this subject than I have.

Re definitions - when writing my last post to you I was taking my information from this NHS webpage: nhs.uk/conditions/atrial-fi... - (The four bullet points under the heading 'What causes attrial fibrilation?') You are referring to a different webpage which gives different definitions. All I can say is that I find it odd that there are different terminologies in use in a field where a high level of rigor would be expected. I am happy to accept your definitions but I cannot change the title of this 'thread' of messages.

I have read the three references that you gave me and found them helpful, thank you very much. Previously, I had actually avoided reading any detailed information about AF on the grounds that 'a little knowledge can be a dangerous thing'. I was thinking that even quite extensive reading on my part would not make me an expert in this field and attempting to draw conclusions from a limited understanding could be dangerous, so better simply to rely on what my consultant tells me.

The main message that comes from reading your links is that early treatment for AF gives the best chance of success, I think regardless of the kind of treatment being considered. And if it is a choice between ablation early on, or trying a fairly long period with anit-arythmic drugs in the hope that this alone will work followed by an ablation if still required, the former may well be the best option. But others reading this should follow the links themselves and draw their own conclusions.

All this makes me wonder why there is no widespread screening of the population for AF. Regardless of what treatment might or might not be available, surely it is best to know if you have AF at an early stage, then take matters from there, even if you decide to do nothing. My local GP surgery, which is a small practice in a rural village, (just an average terraced house converted) has an ECG machine and it took only a few minutes to get my trace. Failing that, my home blood pressure monitor displays a symbol to show if I have AF. These kind of gadgets are really quite inexpensive. Could there be some scheme by which people can go to a local library, council office or whatever and occasionally check themselves with such a simple device, then if they have indication of AF they could choose if they want to go to a doctor for a proper ecg.

From your first link:

'The results of driver ablation alone (without lines) progressively deteriorate, with AF termination achieved in 75% of cases with less than six months of AF; to 47% in 7-12 months of AF; and 13% in long-lasting AF.'

From that, the chance of success for me after years of persistent AF is pretty small - much less than the percentages indicated to me by my consultant (He said 80% chance of success for the procedure that he was about to give me on Monday, if followed by a second procedure a few months later). I can only assume that he is considering more extensive lesions than are considered in that paper. I am now trying to read a bit more about ablation target sites and how the lesions are created.

I am slightly regretting now that I did not insist on the surgical ablation procedure set up for me on Monday going ahead since I may now have to wait a very long time for any alternative procedure. But no point thinking like that. I am pretty sure I will now choose to have a catheter ablation if it is still on offer to me. Both my GP and my brother who is a retired surgeon, but not a cardiac specialist, recently seemed to be sugesting to me that I should take that option.

Thank you for sending me the link; there is a lot of easy -to -read useful information. However, for me, that site does not make a clear enough distinction for nomenclature. I do not find "continuous atrial fibrillation for a year or longer" sufficiently different from " atrial fibrillation is present all the time." My intention was to support your hope of getting back to sinus rhythm and staying there whereas permanent is an acceptance with no hope of returning to sinus rhythm.

It is true that I have done a copious amount of research, but it comes natural to a PhD. I had to because the Canadian health system I was under had placed me on a path to permanent AF. It was a matter of survival. Sifting through the material is quite tricky and time-consuming. But, it paid off for me big time because I am now in sinus rhythm due to three ablations in Bordeaux.

May I suggest that in your above quote the percentages are based on "without lines" which to me would mean more extensive ablation (with lines) than the percentages indicate.

I preferred to focus on the paragraph above that states :

"First of all, we have compared different subsets of persistent AF based on continuous AF duration. The number of targeted regions increases with the duration of continuous AF: from three to four in the first six months of AF, four to five in months six to 12 of AF, and six to seven in long-lasting AF. "

The above was the paragraph that alerted me that once I became persistent "time was of the essence." As it was I had to have extensive ablation due to my time persistent which I take to be your case also.

In your favor, since the 2014 article above, there has been developed better mapping procedures and better catheters. Hopefully, you can take advantage of the progressive technology.

Again, wishing you the best.

I am also in Permanent AF and was told that there was no point in doing ablutions etc and that the only procedure they would consider now is to have a pace maker fitted but, due to me currently having treatment for a form of Leukaemia, they were not prepared to do it. My question to you is why you would want any procedures? Since it has become ‘permanent’ I am no longer aware of the AF. Is that not the same for you? The only meds I take are Apixaban and Atenalol (beta blocker). I check how my heart rate is doing on my Fitbit and although it definitely does react throughout the day (and night) it stays below 100 so is ok as far as the docs are concerned.

Take care

Netty

NooNoo14 (Netty) - You ask why I would want any procedures.

Well, if my AF had never been diagnosed I would have lived in blissfull ignorance of it and would probably be in a better state than I am now since my thyroid would not have been damaged by taking Amiodarone. It has to be said though, that in that scenario I would have been living at risk of an AF induced stroke, not having the benefit of anticoagulant drugs to at least reduce that risk.

However, just by chance, I was diagnosed with AF while in hospital for a reason not related to my heart and as a result of this diagnosis I have since then had numerous hospital and gp visits for tests and consultations over the past few years. And I have had the prospect of a possible (but not certain) cure dangled in front of me for several years but nothing has actually happened. I have to say that after all this I do now want my AF to be cured. Indeed, having just been discharged from hospital with nothing achieved, I feel at the moment that I want that quite badly and I feel willing to take some risk if there is a possiblity that it might still happen. This is not logical since I am aware that if I refused all treatment from now on, other than taking an anticoagulant and possibly a rate control drug, I would probably continue to enjoy a good 'quality of life' for a reasonable time into the future.

Whatever you decide, I hope it goes well for you.

Take care

Netty

Palpman
Palpman in reply to NooNoo14

No no Noo Noo. As far as I know a pacemaker cannot reduce the number of pulses. If you are in AF and you have a pulse of 140 then there is no device that can arrest or absorb half of those to get you in Normal Sinus Rhythm. Please correct me if I'm wrong.

NooNoo14
NooNoo14 in reply to Palpman

A pacemaker takes control of your heart and therefore stops your heart rate rising above a set level. I understand this can sometimes take a couple of adjustments to the pacemaker. I am sure others on here may have more knowledge than me but suspect pacemakers may only be offered if you are in permanent AF???

Netty

Palpman
Palpman in reply to NooNoo14

A pacemaker should more appropriately be called a pulsemaker as it can inject extra pulses but cannot absorb extra ones to reduce HB rate.

This is my electronic engineering mind that is trying to fathom how it can possibly decrease pulses.

bantam12
bantam12 in reply to NooNoo14

I wasn't aware a pacemaker could control fast rates, if that's the case why am I taking meds to control my fast rate when my pacemaker could be controlling both slow and fast, confused am I 🤔

NooNoo14
NooNoo14 in reply to bantam12

We obviously need someone with more technical knowledge to put us right. I will Google it tomorrow.

NooNoo14
NooNoo14 in reply to bantam12

Just copied and pasted from the Internet:

“A pacemaker "listens" to your heart and keeps track of your heartbeat. If it senses that your heart is beating too slowly or too quickly, it sends electrical impulses that prompt your heart to beat at a normal pace.”

Take care

Netty

bantam12
bantam12 in reply to NooNoo14

It depends which type of pacemaker is implanted, there is a Demand PM which controls slow heart rates ( this is the type I have) and there is a Rate Responsive PM which can speed up or slow down heart rate depending on activity.

baba
baba in reply to bantam12

British heart Foundation has a downloadable PDF that explains the different types of peacemakers

Palpman
Palpman in reply to bantam12

Yes. The rate response PM injects more or less pulses as needed when in stress. It cannot absorb extra Sinus Node or AV Node pulses at all as in AFib.

Buffafly
Buffafly in reply to Palpman

I think it depends on the pacemaker. Also ‘pace and ablate’ where the AV node is ablated cuts the link between atria and ventricles so the pacemaker controls ventricle rate.

Lets see if there is anything new that I may add to all the response above.... Oh Hell no! Besides the if it aint broke, avoid any and all invasive procedures that can and will scar the heart when it is not necessary. Save it for when you have no alternative or your QOL sucks.

I have been in permanent AF since 1996, and under the same EP from Oxford who is extremely familiar with the progress of ablation technology and the relative success rates or otherwise, and in particular for conditions such as mine. He has always informed me of the progress of technology and techniques over the years, but has always been reluctant to recommend ablation for my type of AF as he does not consider the odds for success to be sufficient to take the risk of possible complications and failure. My symptoms are similar to yours, which have been mild and enabled me to live a fairly normal life without restriction. Until last year my rate was controlled with fairly high dose digoxin and a daily aspirin. In 2019 I suffered a myocardial infarction (mild) and an angiogram revealed severe legions to the left main and left anterior descending, and I had a double CABG. I now take several more medications, and digoxin has been changed for 2.5 mg od Bisoprolol. I am also on Rivaroxaban for anti coagulation, Losartan for blood pressure, together with aspirin and 80mg atorvastatin. My recovery has been fairly good, and a recent nuclear stress test, which I completed without any problems, determined that my prognosis was now fairly good. Clearly, I do all that I can with a holistic approach to my co-morbities, with daily exercise and a healthy and mainly plant based diet. It is true that my energy levels are not quite what they were, and I do sometimes run out of gas on occasions on uphill climbs or during more strenuous exercise. The cause of that change has been difficult to identify, and it maybe just a consequence of long term AF, and the more recent coronary problems. The heart is pumping well, the resting rate is circa 65-80bpm, and even though I am aware that the atria are slightly enlarged, which is typical for long term AF sufferers, I am advised that my future prospects are pretty good. I am always conscious of the experience and skill set of my Cardiologist, and it is most unlikely that ablation would be recommended as a procedure without there being extremely good odds for success; it is not a case of 'if it aint broke don't fix it' because it is broke, but the condition is being managed, and my quality of life is pretty good and I have lived with this for many years. I am also fortunate in a way that the left atria appendage, a significant source of blood clots for AF sufferers, was occulted successfully with an atri-clip during CAGB and which further reduces my risk profile. Not sure that this helps you, but it is my story, and I have a good knowledge and understanding of many aspects of this disease. I trust my EP implicitly, and I am extremely fortunate that he is respected significantly by his peers, and is a leading authority in this field. Sometimes if success cannot be guaranteed it maybe better to sit on your hands and play for time, especially if your quality of life is reasonable to good with a chronic disease. At 59yrs I am grateful for the chance to enjoy the next stage of my life, and the risk/gain equation should always predominate with such life decisions as you are facing. You are in permanent AF not persistent! Good luck in whatever you decide.

DoodyToot - clearly a well thought out post, thank you. Good that you are happy with your situation and prognosis.

I suspect I am still not over the mental agony, for want of a better description, that I had last Sunday and Monday and that may still be affecting my thoughts and judgement. Soon after arrival at hospital on Sunday I was told by a doctor I had not met before that the procedure planned for me was not the one that I was expecting. But I was happy to sign the consent form, I wanted things to move forward. I had long ago been told about the risks of surgery and wisely or not, I had fully accepted those risks well before going into hospital. I then had a totally sleepless night in a ward wondering what was behind the change of plan and imagining all sorts of possible reasons. I actually felt much better when at long, long last the lights came on at about 6:30am, I washed and was soon taken to the operating theater for the first procedure of the day. But then, part way through the process of anesthesia, the surgeon is saying to me that he is not certain that the risks of the procedure he is about to perform on me justify the likely results. Then comes the sugestion of an alternative procedure that would have lower risk but less chance of success. Well, I had already thought about and accepted the risk levels presented to me and if i am going to have a procedure at all I naturally want the highest possible chance of success. I had an agonising few seconds trying to think what to say, but looking back on it and knowing my rather diffident nature, there was no way that lying there on that trolley I was going to tell the surgeon "to hell with the risk, after three years waiting for an operation lets just get it done!" Although the surgeon was leaving the final decision to me, as it has to be, it seemed that he was pointing me towards abandoning the procedure. So I signed a change of consent form and now feel that I am right back to square one.

I am not blaming anyone for what happened to me earlier this week and it may well be that I am over-reacting to it all. I still trust the consultant to do his best to make the right choices for me. It would almost certainly have helped to have had a consultation before going into hospital and before the change of plan for my surgery. I have actually had several meetings with the consultant over the past few years, taking up an awful lot of his valuable time, but the most critical consultation only happened seconds before I was to be anaethetised. Again, I am not trying to blame anyone - I believe that the reason an earlier consultation did not happen was down to covid.

I’m not sure this comment belongs here but there is a lot of discussion about ablation and I was given the option of a cardioversion or an ablation after three months of persistent AF. I chose cardioversion because it sounded like ablation was a more serious procedure. So far at almost a year the cardioversion has worked but I was told not to count on it working forever . Can someone describe what an ablation is like .

Also , does anyone get strong tingling In feet that radiates . It’s new for me & bothersome. I am wondering whether it’s coming from the flecainide.

Eloise2020 - Do you mean 'what is an ablation?' i.e. the details of the procedure, or do you mean 'what is an ablation like from a patients view point?' i.e. what does it feel like for the patient. Either way, I hope you get an answer here from someone who has had the procedure, or from an expert who knows all about it, but if not maybe try starting a new thread asking your question directly in the title. Just a sugestion, I am new to this forum system.

Regarding your second paragraph - perhaps this is something you need to ask a doctor about.? But you might get a useful response here from someone who has had flecanide with comparable result.

Thanks for your reply. What is an ablation like from a patient’s point of view. I must admit that the type of ablation I was offered was the “old” type - not a catheter ablation.

My big toes are tingling and feel like they are made from cardboard.

I take Flecainide but cannot blame it on Flecainide. It could be the onset of heart failure or even diabetes as due to Covid-19 I have had all my tests put on hold.

Some people are too quick to blame tablets for symptoms that are totally due to something else.

Sorry but that is not correct, please don’t post frightening ‘information’ - this is ‘fake news’ on speed, I hardly know where to start 😬

But, point by point, AV node ablation is not that rare (don’t know the stats), is a well established procedure since 1990 and quite a few members have had the procedure as it is the only answer to intractable AF.

It does NOT kill the heart in any sense.

The electrical pulses from the atria are prevented from passing through to the ventricles.

The AV node is NOT removed from the heart.

If (very unusually) the pacemaker fails the ventricles continue to beat slowly, the pacemaker is to drive the heart at a suitable pace.

If the rate of the AF cannot be controlled by tolerable medication and NSR for reasonable periods cannot be restored this is a good option, in fact the only one at present.

Palpman
Palpman in reply to Buffafly

When I say "kill" in inverted commas then it is not literally so. If the signals to the ventricles are cut off then the heart will die

Rare!!! How long is a piece of string? Having AV Node ablation since 1990 does not make it common. It is a procedure only used in extreme cases.

The AV Node is REMOVED by caurterization. The procedure reduces the node into tiny bits much like when some growths like warts are removed by heat or ice. The bits of the AV Node left are discharged from the body by blood via urine. The AV Node will no longer exist.

If the pacemaker fails the you say that the ventricles will continue to beat slowly. Now please tell me where these beats will come from.

I'm sure you are confused with Total Heart Block where no pulses from the Sinus Node gets through the AV Node to the ventricles. In this case the heart has an emergency system whereby the AV Node will produce it's own pulses at a slow rate.

If the AV Node is removed by ablation then these emergency pulses will not exist at all. So no plan B.

Buffafly
Buffafly in reply to Palpman

Exactly! The emergency system for THB is the same one that works when your AV node is ablated. I don’t know where you got your ‘information’ from but I got mine from the AFA.

Palpman
Palpman in reply to Buffafly

AFA. Amature Football Association is all I find on Google.

Buffafly
Buffafly in reply to Palpman

Look at the name of this forum....

I've had permanent AF for just over two years and had paroxysmal AF (off and on) for the 10 years before that. Never had medication never had an ablation. I have spoken at length with my cardiologist who recommended this course of action.

So I agree with 10gingercats that you should be directed by your existing quality of life. I cycle every day and can happily still do 100 miles in a day. Last week I went rock climbing in the lake district -- so AF doesn't affect me in any meaningful way. So I'm fit, healthy and happy AND have permanent AF.

I think you'll find that abltations are at best a temporary fix and that the problem comes back. Read a book called "The haywire heart" and it explains why, but in a nutshell -- as we all get older the top part of your heart wears out and individual cells start to become a pacemaker of their own. An ablation aims to identify the worn out cells and kill them. They may not identify them correctly the first time so you may need several attempts -- already sounds not great to me. But as you continue to age another bit goes wrong, and then they have to kill that bit too. Some people have it 4 or 5 times.

If you are fit and healthy then why do it? But if during AF your heart is racing at 200bpm it's probably worth it.

Check out my post on this topic "If you are fit and healthy -- how dangerous is AF? Maybe not as much as we've been led to believe..."

Hope this helps. (I'm 62 by the way and my resting pulse was 55 when in sinus rhythm it is 55 with AF.)

Whiteface - thank you for your helpful post - I have downloaded the book you sugest a few minutes ago but obviously have not yet read it. I would say that until very recently it was my intention to avoid reading any cardiology books or academic papers and not to look at website forums such as this one, my thinking being that limited knowledge can be more dangerous than no knowledge, so best to leave the course of action to the good judgement of doctors. However, I now realise that being completely passive is not actually possible - there will come a time when your doctor will say, "We have told you about the options available, now, what do you actually want us to do?"

I did contact my brother, who is a surgeon but not cardiology, yesterday afternoon. My brother said that I have grounds for a formal complaint since from what I told him there were irregularities of procedure during my brief stay in hospital and these irregularities make my consent form and subsequent change of consent form legally invalid. However, I have no intention of making such a complaint since I am sure that none of the hospital staff wished me harm. I suspect that the problem was the covid situation causing a breakdown of communications. I do feel that I am due a review of the options available to me, this review including having the procedure for which I was admitted to hospital but which never happened, since if this procedure has no merit why was I admitted to hospital to have it? (that procedure is not one of the two options now being offered to me).

I find it interesting that your resting pulse (which in any case seems remarkably low) is the same when you are in AF as when you are in sinus rythm. My resting pulse in sinus rythm is 60, with little variation between consequtive readings. In AF it is around 75 and somewhat variable. Nowhere near 200 though, sometimes 100. All my pulse readings in recent years were while I was on rate control medication. I wonder if your 55bpm in sinus rythm is without medication whereas the 55bpm in AF is with rate control medication?

Last week I just felt so angry that an operation that I had eagerly awaited for three years had not actually happened and that I was possibly going to be placed at the start of another three year waiting list. When they handed me that change of consent form to stop the operation going ahead, why had I signed it instead of tearing it up and throwing it on the floor? (not that it would have been easy to do that with a catheter in my wrist). At the moment of signing that form I still wanted that operation to go ahead but I felt that they were pointing me towards some other route and that they must know best. My anger was such that it inhibited my sleeping, I had a 48 hour period last week with no sleep at all, normally I sleep well. I would never have imagined that a situation like this could affect me so much.

I have calmed down a bit now. I can certainly see the merit of the do nothing option, as you have taken. However its difficult to come round to that way of thinking after having spent three years waiting for an operation, believing that having that operation is necessary for my future health.

I also have persistent AFIB (one year)and only discovered it with the use of a heart strap while biking. The only impact AFIB had was a significant reduction (50%) in the intensity of my exercise. Even with drugs my pulse would get to 130 bpm very quickly (65 years old) making cycling less enjoyable for me.

My cardiologist mentioned ablation to me, and I was wary after reading the posts that made the logical "why mess with something you could easily live with it" argument. I had resigned myself to being a casual walker for the rest of my life. I decided, however, to keep my ablation option open. As a first step my cardiologist put me on Amiodarone for two months and electro-converted me to sinus rhythm. While on Amiodarone, I was amazed at how my exercise performance improved, and how much I missed the feeling of a good cardio workout both mentally as well as physically. I decided to have the ablation.

It has only been a week since my procedure so my input might not have much value, but I wanted to share my thought process.

Note: I also had a secondary reason for the ablation. Although I could easily live with my AFIB syndrome, I wasn't sure it would always be that way. I was concerned that it could get worse at age 70 and above...possibly making ablation out-of-reach or not as effective. i never got,however, a solid medical opinion on that possibility.

Whiteface - I read right through the book you sugested to me. I would say that this is a good book but its principle message is directed to quite serious athletes for whom intensive exercise has caused a significant increase in heart size and output compared to the great majority of the population. The message is that for such a person there is quite strong evidence that, relative to the population as a whole, they will be at increased risk of developing AF and other heart problems. The book does also point out that there is evidence that a moderate amount of strenuous exercise reduces the statistical risk of heart problems.

I started going running in my 20s and have kept doing it ever since, although in the last two or three years my running performance has declined to the point that many fit people would walk from A to B almost as quick as I can running! My best guess is that over the years I have on average been out for a run twice a week, but that has been variable. I have had periods when I have been busy at work and done no running, also periods of going for a run almost every day. At the peak of my running ability I would run half marathons 2 or 3 times a year and would expect a time between 1hour 40minutes and 1 hour 45minutes. That put me half way down a typical half marathon results list. The point I am making is that I think the amount of running I have done should, on a statistical basis, be beneficial to my long term term health, not harmful.

Unfortunately, it seems that you can do all the things the medics consider to be good for you: - no smoking or alchohol - moderate and healthy eating - a fair amount of strenuous exercise but not an extreme amount, but all this does not gaurantee a long and healthy life - it only increases your chances a bit!

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