What made you decide to ablate or not? - AF Association

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What made you decide to ablate or not?

Garryarry profile image

To ablate or not ablate? 2 consultants with opposing opinions. What do I do? How did you decide either way?

50 Replies

What were the rationales offered?

Garryarry profile image
Garryarry in reply to Singwell

Opinion 1 = risk of operation is more than risk from AF and ecgs not convincing enough to approve ablation

Opinion 2= I have all the criteria under current medical recommendation for ablation and am already on the waiting list anyway BUT it's up to me to decide whether to or not.

Singwell profile image
Singwell in reply to Garryarry

Hmm. Can you gather ECG info from a device such as Kardiamobile or smart watch? Or is cardiologist 1 sceptical about anything less than 12 leads? How often do you get episodes and how much do they interfere with QOL?

Garryarry profile image
Garryarry in reply to Singwell

Yes and in fact there's the rub. Episodes are short but pretty much daily. QoL affected? I'd like to say not really but then is that due to the medication? In other words the Flecainide is working to a degree but I'm led to believe it's not forever, so will need an ablation at some point. Do I go for it now or wait a few years?

Singwell profile image
Singwell in reply to Garryarry

I'd do a search within the forum on Flecainide. I'm on it but am pretty sure others have been on it quite long term. That said I imagine nothing works forever...

Garryarry profile image
Garryarry in reply to Singwell

I did that in the early days but ended up with an implant, so they have plenty of evidence. QoL is good at the minute. It's been worse though and I can only think it's the medication that's working.

I suffered a very frightening episode of heart failure , fortunately a one - off , which made my decision for me. I was told that this was due to my AF history. I was somewhat hesitant in the year or two prior as so little was known about the procedure .

Garryarry profile image
Garryarry in reply to Jalia

I didn't realise heart failure could occur like that as a one off! That's a bit worrying.

Jalia profile image
Jalia in reply to Garryarry

It was a case of fluid building up in my lungs...pulmonary oedema. Once that was removed and put on diuretics I had no further problems in that way.

What does he mean "your ecgs are not convincing enough"? Your symptoms are not bad enough?

Garryarry profile image
Garryarry in reply to Physalis

I think he meant he wasn't convinced it was bad enough to warrant a procedure Vs tablets. I'd agree the meds have made things a bit better but still quite symptomatic.

CDreamer profile image
CDreamer in reply to Garryarry

That’s a subjective rather than objective view as many EP’s will suggest ablation sooner rather than later so my question would be - how bad needs it be in order to warrant ablation? In other words opinion which is often biased or based on a need to delay for reasons other than what’s best for you at this time.

Likewise there are consultants who will happily ablate anyone regardless so choosing an EP who regularly performs ablations and has the experience of the chances of success in your particular case is what is required. I would carefully research the consultants’ training and experience.

May I suggest you join the AFA Patient Day as I believe whether or not to ablate is a question? Knowledge is potential power.

In my own case - I also had contradictory advice but found out the against party had never really trained in Electrophysiology and only observed ablations and had a bad experience as a cardiologist. When I met someone who had trained at Bart’s and performed many ablations I got a completely different story. I decided to ablate, 1st ablation I didn’t rest enough afterwards so things declined soon after and I had a 2nd 3 months following the 1st which gave me 3 years AF free.

Ablation is considered neither better or worse than other treatments such as drugs or pacemaker it’s more a discussion of what’s best for you. I didn’t want to take drugs for the rest of my life, that was my priority.

8 years later I have no noticeable arrythmias and take no heart drugs but that was because pacemaker was my solution.

It’s not an easy decision to make as both drugs and ablations have risks so it’s about weighing up the advantages and the disadvantages of both and working out which one you lean toward.

Garryarry profile image
Garryarry in reply to CDreamer

Pacemaker was also mentioned but maybe in another 20 yrs. I'm signed up for patients day btw. That's interesting what you've said as well, it's pretty much my scenario.

CDreamer profile image
CDreamer in reply to Garryarry

Age is a consideration re Pacemaker because of having to have batteries changed. I was 67 and after all else eventually failed.

Like Jalia I too had a fright - mine was a BP low and slow heart rate following extra PIP to stop an episode. I past out twice according to my husband and have never been so frightened. It so happened I was seeing an EP two days after and I decided there was nothing to lose. Five months after I'm still of the same mind Have to say I never got the impression it was a dangerous procedure - there are risks with anything of this nature.

Garryarry profile image
Garryarry in reply to Singwell

Nothing without risk I agree. I guess the other thing is the fact I'm on the waiting list and if I decide against it, I'll be at the back of the queue again in a few years time. Maybe better to go for it now.

Physalis profile image
Physalis in reply to Garryarry

Yes, go for it.

Singwell profile image
Singwell in reply to Garryarry

The way waiting lists are going in the NHS due to the pandemic I'd be tending towards saying yes to the ablation

BobD profile image
BobDVolunteer

Fact. All treatment is mainly for quality of life. Opinion, early intervention by ablation stands the best chance of a good outcome.

My guess is No 1 was an ordinary cardiologist and no2 an electrophysiologist. Each have their opinions.

Only you can decide but make sure you have addressed all the life style issues such as weight, diet (less meat more plant), no alcholol or stimulants and less stress. These have been found to greatly reduce AF burden.

I was first diagnosed with paroxysmal AF in A & E in January 2010. I was kept in hospital for 5 or 6 days during which times options were discussed including the dark arts of ablation. I declined the offer on no other basis than intuitively I felt it wasn't for me. I spent months researching and settled for the diet/lifestyle option that BobD refers to. That whipped the AF. Sure thing, 2 or 3 times a year I get 'the wobblies' enough to detect on a tracker but nothing more sinister. My last two major events were April 2015 and February 2018 - I did nothing but ride it out both times.

But TBF, I was diagnosed inside 9 hours of onset of feeling unwell and medication treatment started when admitted. My initial symptoms were feeling like I was going down with flu. Then a big fall in BP, i.e. a drop from 136/80 ish down to 76/50 ish. For my money the speed of the original diagnosis was just sooooo vital in stopping the weird heart electrics getting a grip.

John

Garryarry profile image
Garryarry in reply to carneuny

Is that lone afib then? No other underlying condition like hypertension?

carneuny profile image
carneuny in reply to Garryarry

Not lone, no. I had been on meds for high BP for 3 years before I was diagnosed with paroxysmal AF. To be honest the definition of high BP seems to vary year on year. Back in 2010(age 65) my GP thought around 136/80 was high. Nowadays, my BP is around 130/70 (age 77). I had to call 111 a few weeks ago and they went through all the BP stuff (142/90) and I remarked that was high their reaction was no. Had my annual GP review the other day and my reading was similar, again I remarked that was high, comment was no, that's fine.It's all a movable feast and I am becoming singularly unimpressed by the medical profession.

John

Singwell profile image
Singwell in reply to carneuny

Interesting re BP isn't it? My cardiologist very early on said aim for 120/80 and lower as a benchmark. Of course we zoom up and down during the day but if we hang out in the 140s and 90s I agree with you - too high.

carneuny profile image
carneuny in reply to Singwell

Hiya Singwell,

Yep, after my AF diagnosis my GP, back in the day, also advised to aim for 120/80 as a BP target. So that is my objective and wouldn't be too hard for a younger person but, now at 77, it just isn't possible given my more sedentry lifestyle. Yes, as you correctly say BP bobs around all day every day and I'm reasonably happy at my present average of around 130/70 ish. That said I was search for something on my portable hard drive the other day and accidently stumbled on my BP readings 3 years before AF mugged me. My average readings were 141/80 with HR 79 with 5 readings at a minimum of 125/74 and a HR of 69 and 37 readings over 141/80 with 62 HR readings of over 70, my worst readings were 156/85 and HR 89 ( and there were shedloads over 150/80).

As I said earlier - the day AF mugged me my BP was 136/80 ish which in a few hours dropped to 76/50 ish. On this basis my GP had me admitted to A & E where my HR peaked at 156 bpm and AF diagnosed.

So, its for these reasons I pay a fair bit of attention to BP and HR - my view they are the best warning indicators of trouble ahead.

John

Singwell profile image
Singwell in reply to carneuny

Males good sense to me John. I check mine twice a day as a matter of course.

Garryarry profile image
Garryarry in reply to carneuny

That sounds very similar to my experience. My hypertension was diagnosed first and then mild Lvh. I mentioned the skipped heart beats and they initially said, yeah it's just benign ectopics. It took me two years, a Kardia device and finally an implant to convince them 'something" was going on. Even though I was getting pre-syncope at the same time as my ectopics, I felt as though I needed to pass out and smash my face in before they would actually listen. Thankfully that didn't happen. They've been looking after me since though 😃

I’d go for the ablation if I was you. I was diagnosed lone Af about 6 years ago. Got an episode about once a month lasted about 12 hours sometimes. Hr only upto 80 or 90 though. Then last year I was given flecanide as a pip and it done the job perfectly. But I met my ep in jan 2021. He suggested ablation. And I had the procedure last week. Yes it hurt a bit. And the recovery takes time but touch wood. Mines been a complete success. So good luck.

Garryarry profile image
Garryarry in reply to Lenlec

Before Flecainide mine could go from 37 as a low to 180+ but just a few seconds of galloping thankfully. Enough to scare the hell out of me though. One time it was just like a vibration in my chest. Never experienced anything like it. Yet that one was probably the least scary, just felt weird.

What is relevant: the episodes have to be stopped, the dose of Flecainide might be increased to 200mgs (if 300mgs required probably too much), allow time for lifestyle changes to take effect, your personal decision based on quality of life is the decider.

I had an ablation on August, pretty much fitting under Option Two.

It was QoL for me, Afib was inhibiting daily life and it was worth the risk of the procedure to go back to a more normal life.

I decided because the symptoms were getting increasingly worse and affecting my quality of life. I understood that if I went into permanent AF there was more difficulty with ablation working . I procrastinated for probably 18 months. I had a cryo-ablation two weeks ago. I wish I’d of done it much earlier.

Garryarry profile image
Garryarry in reply to kalgs

I'm guessing mine wouldn't be for at least 12-18 months. That's a guess though. Already on 200mg of Flecainide and I still have symptoms.

Signing up and listening to treatment options may help you make a more informed decision

heartrhythmalliance.org/fil...

It's always worrying when doctors can't agree but it will be for a good reason. Have they said? Each person's heart will have its own range of particular issues as well as the arrhythmia, and I'm guessing this is why there is disagreement.

I have a friend who is 88 with long-standing persistent Afib who has had no treatment except warfarin; he is lucky as he has never suffered from tachycardia, and he's amazing for his age. My son has a friend who is similar, at 74, but he has had five ablations, and been told that he can have no more; he's still free of afib and, again, he's well.

From what I've been told and read, persistent tachycardia resulting from an arrythmia needs resolving since this can sometimes cause heart failure and even valve weakness. As I understand it, an early ablation is considered as the best way forward for most people.

There are other things that can be done, however. Since many people with an arrythmia will have a contributory cause, dealing with this might cure the arrythmia. Some common causes are high BMI, lack of exercise, high blood pressure, diabetes, thyroid issues, heavy drinking, excessive exercise and sleep apnoea.

Steve

PS I've just read your later post. What are the risks from the ablation that the doctor feels outweigh its benefit?

Purely QoL for me. Meds didn’t work. I was getting more episodes and very symptomatic. After 2 yrs I decided I couldn’t wait anymore and went for it. Good decision for me and (so far) it has worked. Everyone is of course different but that was my thought process.

I had an ablation because 1 My anti arrhythmic became dangerous for me 2 My EP said I was heading for Permanent AF 3 He said if I were his mother he would advise it. It stopped AF for about 2 years but episodes now are much less symptomatic despite not taking anti arrhythmic and comorbities make it less advisable to have another ablation. If I were your mother I’d advise it 😂

Garryarry profile image
Garryarry in reply to Buffafly

👍 Love that. 😂

My first "known" episode of afib...went to E.R. was admitted, put on monitor. It was a week before my rate became normal enough to discharge. I was scheduled for ablation and advised pace maker might be implanted (it wasn't) . 4 years since ablation, one episode of afib with pneumonia.

I haven’t had an ablation because so far my symptoms are occasional and not too hard to deal with. If things changed I would change the decision as it should only be based on quality of life

It depends on what dose of Flecainide you are on. If you are still getting episodes on a max dosage you should go for the ablation. If you’re on a lighter dose folks have often found that upping it a little makes a big difference. You may need an ablation eventually but perhaps you can buy several years and techniques will improve or at least we will be mostly past Covid (I hope).

Garryarry profile image
Garryarry in reply to Bonn414

200mg. I've been told that's the max they'll go to.

wilsond profile image
wilsond in reply to Garryarry

I was on 300 a day for AFib for months and then reduced to 100 a m 150p.m(250) keeps me steady ,plus 1.25 Bisoprolol for rate and to cut my flutter from kicking in.

Garryarry profile image
Garryarry in reply to wilsond

Yes and the thing is with medication that at the moment I'm not too bad but I almost forget, that's probably the Flecainide!

I thought an ablation would be an immediate cure, soon found out it wasn't! Had a second one, still no better. Third, which my daughter told me not to have (I thought she was having a premonition and I'd have a really bad result) really helped and I felt better immediately.

Now in constant AF, but heart rate is low and flits between 60-90's, never over. I can lead a normal life again, apart from walking right after eating a big meal. To be honest I try to avoid eating a lot.

I wish that before having my first ablation I'd changed my diet. Mine is now more plant based and I don't eat anything containing artificial additives.

Jean

Hi. I was diagnosed 5 years ago and have had varying episodes regarding how symptomatic I've been. I had an ablation in April and I'm getting AF breaking through again. Do I wish I'd had it earlier? Yes, I do. I wanted to be free of meds as I'm on Amiodarone and want to come off that asap.

Garryarry profile image
Garryarry in reply to Ducky2003

I've heard thats a horrible med as well.

Ducky2003 profile image
Ducky2003 in reply to Garryarry

I've been on and off it for the past 4 years but I'd rather be off it.

carneuny profile image
carneuny in reply to Garryarry

From memory ( almost 12 years ago now), when admitted to A&E I was given an IV drip of Amiodrone and the lovely, drop dead gorgeous young woman Dr. said " ..... don't worry, this will make you feel as if you are dying ...you're not, just feels that way ...." then giggled!And there was me thinking I was a corpse in 'Silent Witness'.🙂🙂

I was scared before I had my ablation in August but I decided it was the right thing as my episodes were messing up my life. You'll have to decide yourself if you need one but in my case I couldn't plan anything and I was always twitchy, waiting for the next bout. Best wishes

I had PAF for over 5 years, episodes about once a month or two. Treatment was PIP (metoprolol 50 mg and flecainide 300 mg) only when episodes hit (btw, I'm in US). The meds worked everytime to bring me back to SR within about 2-3 hours. Early on, the docs recommended ablation, but I resisted. I also resisted anticoagulant meds (call me stupid but stroke risk, I was told, was 4.5% without epixaban and 1.0% with). Early this year episodes increased to once a week--and I'd finally had enough. Qol was in the tank. I went for ablation and now doing well. And by the way, after ablation i was on apixaban for 90 days (it wasn't too bad on me. Sore joints and feet).

One interesting thing about my ablation procedure--I was originally scheduled for PVI (only), but when I was on the table in the lab, doc said he was going to put in a "flutter line" as well because about 20% of his ablation patients were back in for another ablation because of atrial flutter soon after the primary PVI procedure. The flutter line was in the right atrium (a line of scarring along the atrium wall). Not sure if I would have developed "flutter" after ablation, but he attributes his higher ablation success rate (verus other docs) to the flutter line. His success rate is about 85% for first time ablation.

Anyway, I understand your hestitation, as I was sceptical of the ablation for many years--but it progressed, got worse as it normally does, and the PIP meds were awful. It took me about 6 weeks after the ablation to fully recover--to feel as if I could go hard physically. I feel great today with no AF and no more medication hangovers. If I had to do it over again, given my experience, I'd do the ablation sooner. All the best to you.

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