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Atrial Fibrillation Support

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Medscape posts the new consensus about treating AF

OldJane profile image
60 Replies

“previously, catheter ablation has been used mainly for patients with paroxysmal AF who have already tried or who were intolerant to antiarrhythmic medical treatments, but now, the consensus statement is recommending catheter ablation even in patients who have not tried other treatments. This is based on several randomized clinical trials that have shown superior efficacy and similar safety with catheter ablation when implemented as first-line therapy in patients with symptomatic paroxysmal AF.”

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OldJane profile image
OldJane
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60 Replies
BobD profile image
BobDVolunteer

I think many of us have had that opinion for a very long time OldJane. Sadly the logistics make it almost impossibe to implement especially in UK with the numbers involved. Training EPs takes time and frankly I would be reluctant to be treated by an inexperienced EP. MInd you some young chaps who I met near the start of my journey are now leading teams thoughout the UK. I just hope those teams are replacing the old chaps who taught them and have now retired.

OldJane profile image
OldJane in reply to BobD

Agreed but although many know the research it seems many don’t and GPs are slow to catch up. It is good to be armed!

Buzby62 profile image
Buzby62 in reply to BobD

I was under an experienced EP but on the day the procedure was completed by a fellow under his supervision as it says in my discharge letter, I had a suspicion this was happening during the prep but was not told before. If anyone is concerned about that then you will need to make it clear before your procedure.

Karendeena profile image
Karendeena in reply to Buzby62

A registrar working with my EP inserted my catheters and also did the bedside bit before and after the ablation. I had conscious sedation and my very experienced EP Professor Ng came into the lab and did the actual ablation.

Registrars have to learn but I wouldn't want anyone inexperienced doing the actual ablation

etheral profile image
etheral

How bout revisiting your ban on Tikosyn for afib which is available in the US and has kept me Afib free for 5 years? etheral

mav7 profile image
mav7 in reply to etheral

etheral May I ask if you had paroxsymal or persistent/permanent afib ? And were previous cardioversions or ablations successful for a period of time. Thanks !

I have been offered Tikosyn for persistent afib.

etheral profile image
etheral in reply to mav7

My afib started suddenly. It was consistent for 4 days at which point I was very SO B because combined with old damage from an anterior MI my EF (cardiac output) decreased to the point fluid backed up into my lungs and I went into Pulmonary edema. I was cardioverted in the ER and remained in NSR for a week with the CHF abating. One week later I went back into Afib and was admitted for monitoring while Tikosyn was introduced. After 2 days

I converted to NSR and have had no side effects from the Tikosyn. IF it's available to you I would highly suggest a try before getting any surgical procedures. You do have to be hospitalized because it can occasionally cause dangerous arrythmias while being introduced. Best of luck, etheral

mav7 profile image
mav7 in reply to etheral

Thanks for the informative reply.

Congrats on your success ! Quite a recovery.

mjames1 profile image
mjames1

My opinion has been that afib is mostly over treated or under treated.

Over treated when too much is made of a few episodes. An under treated when a problem obviously exists, but some sort of rhythm control is not instigated.

One would think that our doctors would help us navigate these waters, but unfortunately, it so often falls to us.

These new guidelines make some sense however they are so broad that over treatment can be a problem.

Unfortunately, doctors too often go by guidelines and not enough by common sense.

Jim

bean_counter27 profile image
bean_counter27 in reply to mjames1

"These new guidelines make some sense...."

These are not new guidelines. I feel like I'm being pedantic but it was important enough for them to actually state - "This consensus statement represents clinical advice rather than guidelines"

I presume it means it falls short of a change to guidelines i.e. holds less weight in EP's decision-making.

bean_counter27 profile image
bean_counter27

"we're all different"

Yes, as a general statement, ablation might be the better option as a first line of treatment for symptomatic paroxysmal AF. However, does that still apply to someone who has a low AF burden and could easily be managed with medication? I suspect not - and that's the problem with statements like this that are seemingly not accompanied with more detailed advice.

OldJane profile image
OldJane in reply to bean_counter27

My EP would say yes it does. Stamp on the AF early - best outcomes from ablation

BobD profile image
BobDVolunteer in reply to OldJane

In fairness it is generally accepted that obesity can be a block on such matters and that treating that first stands a better chance of success so this is not a one size fits all situation.

OldJane profile image
OldJane in reply to BobD

Yes no point treating a body that is suffering other major challenges. Luckily I didn’t have other underlying medical stuff (well, Haemochromatosis which was ruled out as a pathological trigger) but lots of orthopaedic ones, and good BMI etc

Karendeena profile image
Karendeena in reply to OldJane

My EP would agree!

frazeej profile image
frazeej in reply to OldJane

So says an EP!

bean_counter27 profile image
bean_counter27 in reply to OldJane

Okay but my question for your EP would be how will an ablation improve my quality of life?

I basically lead a normal life with AF and medications.

My last episode was 4 1/2 months ago and when I have an episode it only lasts for hours and has little impact on whatever I was doing or planning to do. I am 63 and not on anticoagulants and my recent echo and stress test results were normal.

OldJane profile image
OldJane in reply to bean_counter27

He would say AF is progressive and almost always so. And this may lead to other heart defects and serious conditions. The more the heart experiences AF the more likely it is to be remodelled and the more of a habit AF becomes. The more affected the heart, the more likely other functions are affected - oxygen supply to all of you especially lungs and brain, I would like to fend off a deterioration in my heart for as long as I can. But agree any intrusive intervention has risks…

bean_counter27 profile image
bean_counter27 in reply to OldJane

The "elephant in the room" is that I am already being treated successfully with medications i.e. too late for the first line of treatment to be ablation.

In addition, the risk of failure and/or poor quality of life on medication has been removed - at least for the time being.

So the question for your EP would be should I stay on medication unless/until my circumstances change or should I abandon what is currently working for the hope of an even better outcome? Noting there's no guarantee of success and there's a small but real risk of complications.

Another option is to wait for pulse field ablation procedure to become readily available.... which is my current plan.

The following is an extract from a paper in the Japanese Journal of Cardiology (July 2022). Presumably not everyone agrees but I'm certainly not alone in my thinking.....

Catheter ablation of atrial fibrillation: Current status and near future

"..........AF is not an acutely fatal disease. Thus, the main principle of catheter ablation for AF is to improve the patient's QOL by eliminating symptoms relating to AF.

OldJane profile image
OldJane in reply to bean_counter27

I guess up to you, agree the new procedures look more promising, however you are relatively young so time will tell. I won’t have a second abaltion unless my episodes are more frequent than my current one a year!

bean_counter27 profile image
bean_counter27 in reply to OldJane

What was your ablation experience like?

OldJane profile image
OldJane in reply to bean_counter27

Textbook

Prawnsalad profile image
Prawnsalad in reply to OldJane

Are you in Uk. I can’t even get an appointment for months. My AFIB is recent and paroxsomal and I want to go on pill in pocket instead of, blanket meds for all approach

OldJane profile image
OldJane in reply to Prawnsalad

Where are you in UK? I am in Brighton where there is a team which prioritises AF

Prawnsalad profile image
Prawnsalad in reply to Prawnsalad

I am in Southampton

Lilypocket profile image
Lilypocket

It is difficult to get an ablation or even know about them. When I started my PAfib journey in 2012 I was seen by a cardiologist whose belief was it could only be treated with medication. Of course many people live with Afib on medication very well but it was only through this site that I found out about ablations as an option. So basically I lived with Afib for 10 years with worsening episodes before I had an ablation in 2022. I wish I had done it earlier but a mixture of ignorance and then my own dithering delayed it. My cardioligist was supportive once I decided to go for it and recommended à good EP but would never have done if I hadn't bought up the option in an appointment after visiting this site. So it seems it is still up to us to do the research and make suggestions which should be the dr's job really.

OldJane profile image
OldJane in reply to Lilypocket

I think thank knowledge and advice has changed a lot in the last few years. A doctor friend said medical issues which have few treatments tend to be seen as chronic and mostly just monitored. Ablations, scans, other bits of the armoury have progressed so much that newer clinicians have a different attitude and possibilities. I was lucky - GP sent me away with beta blockers but I insisted on seeing an EP and had a swift ablation

Lilypocket profile image
Lilypocket in reply to OldJane

But the initiative came from you or you would still be bobbing along on meds 🙂My cardiologist was very good but stayed inside his medical box so to speak. But all along he had the name of an excellent EP but never once suggested I see him until I suggested it after acquiring knowledge through posts on this site.

Buzby62 profile image
Buzby62 in reply to OldJane

Cardiology were happy for me to carry on with a beta blocker and anticoagulant, after 2.5 years I asked the question in one of my reviews about seeing an EP just to have the discussion. Three months after seeing him I had a cryoablation and now off all the meds. I also made my mind up from all the reading here and on the AFA website that I wanted to try and stop the progression of my condition but fully appreciated someone else might want to continue with meds as bean_counter27 says.

Singwell profile image
Singwell

Thanks for sharing. In other countries such as Sweden ablation is offered much earlier as a treatment. We need to do the same.

Buzby62 profile image
Buzby62 in reply to Singwell

Hi Singwell, I think it is happening, I spoke to someone just yesterday that has just been diagnosed with PAF and straight on the waiting list for Cryoablation. I think the main thing is that your GP refers you to electrophysiology rather than just cardiology. Take note Newbies!!

CDreamer profile image
CDreamer

You can have all the recommendations and guidelines but access to EPs in the UK - especially in Wales, can for many be a long wait at best.

I have come to the conclusion that it’s not just lack of knowledge from GPs but a deliberate policy to meet certain criteria to ‘ slow down the traffic’ so to speak. Some criteria maybe clinically led but I do wonder how much is politically led, both at local and national level.

I agree that we are often ‘left in the dark’ regarding treatment options and I had NO idea there was ablation option until I came across AFA and attended a Patient Day and came into this forum - - diagnosed in 2008, it was 2013 when I found AFA. I learned more in one afternoon in Birmingham than the previous 5 years, even though I had an excellent GP who eventually got so frustrated with local cardiology suggested I see an EP in London - there were none at that time in Devon so it was either Bristol - no spaces as waiting list full - or London.

Thankfully times are better now but still huge room for improvement. It’s no good saying to anyone ‘treat early with ablation’ if you can’t get one or even a referral and then have to wait months sometimes years to even get an appointment on the NHS.

Call me cynical. 🤨

Singwell profile image
Singwell in reply to CDreamer

Same experience here. And there are no EPs at my local cardiology unit (I'm in Wales) and it is EXTREMELY difficult to get referrals across the border approved. I'm fortunate to be close to the border and that Hereford has a visiting EP from QEH Birmingham. For me, the magic words were- I cannot work, attend or deliver events ,conferences etc that got me on the list.

Karendeena profile image
Karendeena in reply to CDreamer

I waited 16 months for my ablation at Glenfield, Leicester. I never had a problem seeing an EP but then again I pay for that privilege

Ppiman profile image
Ppiman

I wonder if it shouldn’t still depend on the frequency and symptom level of AF for each person?

Steve

OldJane profile image
OldJane in reply to Ppiman

My EP said just a few episodes meant get it stopped.

Ppiman profile image
Ppiman in reply to OldJane

That’s interesting. It seems a risk to me if you only get AF mildly and irregular, especially as it’s likely, as I’ve read (I don’t know the statistics on this), to return eventually and need subsequent ablations.

Steve

OldJane profile image
OldJane in reply to Ppiman

BTW I don’t think this plain sailing. Ablations carry risks. An acquaintance had a very bad outcome I don’t know her other vulnerabilities

Ppiman profile image
Ppiman in reply to OldJane

I have heard on here, similar. When you read online a description of ablation, and even more so of things like the "mini maze", they are all very complex and delicate procedures indeed. My son's colleague has had six in total, and now can have no more despite his AF returning. He's 76 and coping well, even still teaching occasionally part time.

Steve

OldJane profile image
OldJane

depends on your understanding of your condition. If every fierce episode encourages the future episodes you want it quieted. I had two 12 hour monsters, nothing for 4/5 years then four weekends in a row. Immediately offered an ablation, all episodes stopped in the 8 week wait…

Rainfern profile image
Rainfern

The new advice on treatment for AF is backed up by statistics on the risk of dementia (multi-infarct) and strokes in those with AF. That’s according to my EP at a public talk he gave on latest developments in treatment of arrhythmias. It was at this talk I learned that my newly diagnosed persistent AF could be treated by ablation and the sooner the better. My GP had never heard this “soon as possible” approach, particularly for mild persistent, but was happy to accept that thinking was changing and supported my decision. Unfortunately post pandemic I was a bit caught up in the longer waiting lists, but I had a great working relationship with my EP who I think enjoyed my unusual enthusiasm! Even if I only get a year AFib free my decision was worth it. In the end it will always be the choice of the individual.

Ppiman profile image
Ppiman in reply to Rainfern

I'll have another look at the research on this as that is interesting, and worrying. My elderly friend, now 90, is as bright as a button and has had permanent AF for many years now. These chronic conditions which always occur alongside so many other comorbidities must be very hard to track and research. Much of the data is also not a product of primary research but of secondary meta-analyses of published studies. This is a marvellous tool but, I have read, can be problematic.

Steve

Rainfern profile image
Rainfern in reply to Ppiman

Yes I agree. These are not straightforward statistics at all, and are easily nudged to fit the thinking of one or two influential cardiologists, or a leading cardio department, or ideas floating around a prestigious conference. I would be interested to know, for instance, just who are the biggest influencers on NICE decisions and how these come about. It’s all very much “one size fits all” so thank goodness for forums like this!

I guess when Ai rules the world our treatments will be so individualised and our risks measured to within a fraction of our lives, that we might be less dependent on faith or wing and a prayer. Not sure what’s more scary though!

Ppiman profile image
Ppiman in reply to Rainfern

It’s a thought I’ve had a few times. AI and healthcare will be the way soon enough I think as it saves expensively trained medics!

Brave (or is it grave?) new world.

Steve

mav7 profile image
mav7 in reply to Rainfern

Rainfern Hi Rain, may I ask as someone who also has persistent afib.

- Was your ablation successful or are you still waiting ?

- Does "mild persistent" mean not always, less symptoms, or ...

Rainfern profile image
Rainfern in reply to mav7

Hi Mav,

by “mild” persistent Afib I mean that I didn’t suffer the kind of horrendous episodes that some people on this forum suffer. I did however experience a raised heart rate, breathlessness on walking and stairs and a couple of episodes at night where my heart rate got uncomfortably high and I had the paramedics out to check me over. I was very aware of the arrhythmia which I found quite difficult to live with. By persistent Afib I mean that there were no gaps in the arrhythmia and this was my diagnosis following a holter ecg.

Medication was kept to a minimum - anticoagulant, a short spell of amiodarone before my second CV and Digoxin to reduce breathlessness while on waiting list for ablation. I also had a mild beta blocker (propranolol) as pill in pocket which I only took once or twice .

As far as I’m concerned my ablation last October has been completely successful. I monitor for AF with my iwatch and touch wood I remain in NSR. To be honest I feel like a new person. Please feel free to message with any further questions.

Prawnsalad profile image
Prawnsalad in reply to Rainfern

Hi. A few questions from your post

I want to go on pill in pocket - was this easy to assess and achieve NSR..?

? What was the process to start it?

what sort of abalation did you have?

Which smart watc h do you use?

I saw a cardiologist privately initially; to speed up diagnoses ( taken from Kardia mobile and accepted by him but not GP) put on blanket treatment of meds, now changed as didn’t agree with me and I am now waiting to hear about PinP whilst waiting to see/hear from EP Alternatively I could pay 20K for an abalation ! I’d be seen a lot sooner then! Diagnosed with Paroxysmal AFib and keen to nip in bud if possible

Rainfern profile image
Rainfern in reply to Prawnsalad

Hi Prawnsalad, the pill in pocket I had was a beta blocker which does not stop the AF. It brings the heart rate down. Propranolol was good for me as I have normal blood pressure and other beta blockers tend to bring blood pressure down. Also I knew propranolol because I took it in my 20s for panic attacks!

I can’t tell you about other medications used in this way. The amiodarone was given as it sometimes acts as an anti-arrhythmic and improves chances of a successful CV, but in my case I was only in NSR for a few days afterwards. Amiodorone is not given as a pill pocket - it’s serious business that needs close monitoring.

With persistent AF you are never in NSR, unlike you with the paroxysmal form. So the Digoxin was prescribed simply to strengthen my heart beat and reduce breathlessness while waiting for ablation. They took me off it the day of my ablation.

Like you I went private for the initial consultation with an EP and was lucky I had the same EP for my ablation on NHS. Wonderful chap! I came quite close to paying huge sums of money for an ablation (equity release at the ready!) but fortunately - I think partly through my persistence - was offered the procedure on NHS. I’m now very glad I waited as I have money available should I need it for a different procedure such as wolf mini maze if the AF ever returns.

I have an iWatch to monitor my heart. It was recommended by my EP. It now gets used as a kitchen timer and not much else.

Very good luck on your route forward and hope that you get offered an ablation soon. Keep doing meditation, relaxation and deep breathing while you wait!

Rainfern profile image
Rainfern in reply to Prawnsalad

PS it was a cryoablation. The chance of success I believe is in the hands of the EP more than the type of ablation.

Prawnsalad profile image
Prawnsalad in reply to Rainfern

Thank you for your reply. All the best

Buzby62 profile image
Buzby62 in reply to Prawnsalad

There is a PiP information sheet in the patient resources on the following link

heartrhythmalliance.org/afa...

I prefer to use this link rather than a direct link as all the resources are there for you and others to browse.

Best wishes

mav7 profile image
mav7 in reply to Rainfern

Thank you for the informative reply !

May you have continued success.

Vonnegut profile image
Vonnegut

You must have good practitioners and sadly, I’ve heard here that not all are which might explain how many people on here mention having had several!

OldJane profile image
OldJane in reply to Vonnegut

Repeats aren’t necessarily a sign of poor practitioners! I think - as in other branches of medicine - they tend to do the minimal at first and hope that is enough. But of course sometimes it is not. Scanning etc has improved so much that I wonder if there will be fewer repeats? Also, once a treatment is more routine, more get done. When ablation was not well studied or done, it was rarely considered.

Clinical concerns change. I have a genetic iron loading disorder (Haemochromatosis), a very common disorder, perhaps as many as 1 in a 100 or us carry the vulnerability to it, so many on this site may have it and not know! But they only found the genes 30 years ago, and only more recently realised quite how much pathology can be caused by it, or how useful various new scans and tests can be in monitoring damage particularly to the liver. It has gone from being under the radar for GPs and specialists to a much higher profile and assertive treatments and monitoring. It may relieve the NHS from the pathology along the line but it also greatly increases the need for specialists and clinical care.

OldJane profile image
OldJane

happy folk are rarer visitors to sites such as this.

frazeej profile image
frazeej

Surgeons always recommend surgery, EP’s always recommend ablation, and Cardiologists always recommend medicine. Fact of life!

Rainfern profile image
Rainfern in reply to frazeej

😂

Vonnegut profile image
Vonnegut in reply to frazeej

The EP I saw prescribed medication- Flecainide - and it works very well for me at preventing episodes.

OldJane profile image
OldJane in reply to Vonnegut

I have it as a PIP

Vonnegut profile image
Vonnegut in reply to OldJane

I did at first and as the episodes increased iit was suggested I took it daily and I haven’t had an episode for 15 months now and that one must have occurred at the time so was infected with covid with no other symptoms but a positive test! That last one was ended in a few hours with an extra pill.

We had our covid booster jabs yesterday and I now have a swollen painful upper arm where the needle went in! Nastier than when I officially had covid!!

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