Puzzling over upcoming AF ablation - Atrial Fibrillati...

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Puzzling over upcoming AF ablation

Qtmcfluff profile image
24 Replies

This is my first post in here. I am booked in for my first ablation in 2 weeks. I have been in perfect sinus rhythm for 6 months. My AF began when i was 17 (i am 42 now). I was in AF for 5 years initially without realising before it got picked up during a tonsilectomy and eventually restored to sinus by dc cardioversion. Since then i have had 5 more occurrences of AF, all of which needed to be shocked back into rhythm. Inbetween bouts i have gone through periods of sinus rhythm lasting 7 and 10 years. With the op date looming i am being haunted by the question of whether the risks of ablation are worth it for my situation. The afib begets afib argument hasn't seemed to apply to me so far (and from what i understand is more relevant to those who get their first bout when older).

Doctors all seem quite confident that operating is the right decision. Its not easy to submit to a procedure however with the potential to ruin my life when i feel fine currently and could go some time before another bout of Af. I would welcome Anyone who has been in a similar predicament to chip in with their experiences and advice. Thanks.

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24 Replies
Dodie117 profile image
Dodie117

I can totally understand why you are dubious. I am no expert but the more expert people on here say treatment for AF by ablation or meds is about improving quality of life. I would agree with that. Where are you based? Could you get a second opinion from an electrophysiologist. I’m sure you will get lots of replies. I have had an ablation which has kept me free of AF for 4 years ( so am pro ablation) but I was having 5/6 hr episodes 4 or 5 times a week. In your situation I would be hesitant, like you - unless there are other factors you have not mentioned.

Qtmcfluff profile image
Qtmcfluff in reply toDodie117

I will be getting it done at the Bristol heart institute in the uk. I have no co-morbidities and no meds have ever helped to restore SR. I do hate going into AF and I would love to walk out after the procedure feeling fine having increased my odds of never going into AF again. Im just not sure this procedure is yet as safe and predictable as i would like. So if i waited5 or 10 years, the gamble i would be taking is that the procedure would improve more than my condition worsens. What an impossible thing to try to judge!

secondtry profile image
secondtry

Reading between thee lines, it seems you are in favour of postponing with good QOL and consequently you haven't given us the actual reason the medics think you need the ablation.

From the information you have provided, I would say ablation is not a pressing matter and better to wait until procedures improve. In the meantime, don't be complacent and focus on improving lifestyle, diet and supplements - all discussed here in full.

Qtmcfluff profile image
Qtmcfluff

Doctors attitude is that i am a good candidate for ablation, likely to have a successful outcome, so why wait until my condition worsens with age. I get that and respect the fact that they do this day in day out. I am therefore inclined overall to take their advice, but i do so knowing that there is a persuasive argument against doing it too. I know there is no right answer, but its nice to be able to have a forum where i can express my thoughts to those that understand.

Dodie117 profile image
Dodie117

It’s a dilemma for sure. Have you thought about getting a 2nd opinion from another EP either through NHS or privately.

jeanjeannie50 profile image
jeanjeannie50

The way you are feeling right now is typical of how most of us felt as our ablation date drew closer.

I've had three ablations and not been cured and can look at their success, or not, in both ways. After my first ablation my AF attacks became worse and I would get periods of AF lasting hours or days, but the banging in my chest my heart used to do as I climbed hills disappeared.

After my second my AF continued, but now the spells would last for months and I felt quite disabled by it and was unable to walk more than a few hundred yards. At this stage I was told I wasn't suitable for any more procedures and would have to 'live with it'. During a spell in hospital with a fast AF heart rate I was told by a cardiologist that the ablations had probably made my heart a bit stiff in functioning. So let's not forget that ablations do damage our heart.

Out of the blue two years ago I had a telephone call asking if I'd like to have another ablation the following week. I said, yes, but of course then started my usual wondering (like you) should I have it or not. My daughter was dead against me having another and I wondered if she was having a premonition. I went ahead with it and whereas my previous two were carried out under sedation this one involved a general anaesthetic. Immediately afterwards I felt wonderful, bright and perky and my EP visited and said to stop all tablets apart from my Warfarin. When my daughter came to visit me in hospital that evening she was delighted at how well I was. Next day I was due to leave, but went back into the most debilitating AF and was kept in. I went back on my pills and finally left the hospital next day. I now take 2 x 100mg Flecainide and 2 x 12.5 of Metoprolol and to be honest feel that these pills have done more for me than ablations have.

I agree with what secondtry has said and if I were you I think it would be a better idea to eat healthily, reduce sugar intake and wait until ablation procedures improve, or better still they discover why we get AF.

Dr Sanjay Gupta, a cardiologist at York Hospital in the UK, has made some excellent videos relating to AF and put them on YouTube and he believes that taking a supplement of magnesium helps a lot of his patients. I would thoroughly recommend taking a look at them.

Why not see if you can postpone your ablation until you are sure that's what you want.

Best wishes

Jean

jeanjeannie50 profile image
jeanjeannie50

Of course your EP would advise you to have an ablation, it's his job and what would he do without his high wage.

As a matter of interest take a look at this: healthunlocked.com/afassoci...

BobD profile image
BobDVolunteer in reply tojeanjeannie50

That's a bit cynical Jean!

BobD profile image
BobDVolunteer

I am a great advocate of ablation having had three before my AF was sorted out. I also feel that doctors would not have been prepared to operate when I was diagnosed with prostate cancer 8 years ago had I still had AF. I had to fight a bit to get them to do it as they argued I could be treated in other ways. This we now know to be untrue as it had already started to spread and that treatment would not have killed all of it. As a result I genuinely believe that my ablation saved my life.

Are results likely to improve over the next few years? This is the 64,000 question and frankly nobody knows. Yes EPs are doing more and results in UK have improved over the last ten years but will a sea change occur? I think not. In Uk pressure on NHS is likely to make it more difficult to get PVI ablation I fear.

Will your AF burden increase. Very likely over time.

Is it a dangerous procedure (not operation) ? Sounds scary but would a devout coward like myself have three if it were? Most of the risks explained are to protect the medics from legal action rather than real everyday risks. We never know what everyday things we do could suddenly try to kill or maim us and life is all about risk management after all.

Those points made, I quote an old proverb. "When the pupil is ready the teacher will come." The only right answer is what it right for you . Just never look back and say I wish if you postpone it and things take a turn for the worse.

I understand your feelings.

I agree with what secondtry and jeanjeannie50 have said. Concentrate on lifestyle changes if appropriate . Having an ablation is a big deal. You are having multiple burns made in your heart tissue.

You can always reconsider at a later date when advancements may have been made in the treatments available.

Personally I have had 3 ablations and 17+ dc cardioversions. ( I won't bore you with details). I have been largely AF free for nearly 12 months and I am attributing this to the supplement Magnesium Taurate. I may be wrong and it may be coincidental but time will tell !

Hope you are able to be comfortable with your decision.

Best wishes

Sandra

vhync profile image
vhync in reply to

How much Magnesium Taurate do you take? I have been taking it for just over a week at 146mg. But added to the 156mg of Magnesium Malate for 8 weeks, and Magnesium Chloride footbaths for 10 weeks. Think that I've seen some benefit, but wonder if I should be taking more.

in reply tovhync

I take just 2 x 125mg tabs of mag taurate each day. I noticed an improvement within days.

CDreamer profile image
CDreamer

Some really good answers above, all valid and helpful so nothing much to add except to say I agree with them all! I hope it has helped you to make up your mind. Your body, your life and your decision. Remember that you can opt out at any stage but with the NHS as it is you may not be able to opt back in again if you decide to go for it at a later date.

It could be approaching the event nerves but if you have some deep seated worries you need to talk them through with your specialist.

I had 2 ablations, I had complications with both and my AF returned after nearly 3 years but I am still very glad I had them done as I was very symptomatic and had many episodes which came in clutches - then nothing for a while. The episodes I get now are not as symptomatic and I cope with them much better.

At your age the consideration of being on a lifetime of meds is also a consideration as all have side effects. You didn’t mention meds only DC conversion - which is a really good indicator of long term ablation success - which I would guess is why the recommendation from your doctors.

Best wishes CD

Qtmcfluff profile image
Qtmcfluff

Thanks for all your comments. I have spoken to 3 different EPs whilst in and out of hospital over the last 2 years. 2 very pro ablation and 1 more cautious whilst admitting i was still a good candidate. The bhi doctors seem very confident and positive about ablation, which is hopefully a sign that they are getting good results there and have minimal complications. I react badly to NOACs and so am on warfarin, which isnt great either but a little more tolerable. If i delay things i face the prospect of starting this process all over again in the future, including the trip to a and e, all the blood tests, trying to explain to work colleagues what the hell AF is etc.

Ultimately it comes down to whether one buys into the strategy of ablate early to avoid a more complicated AF battle down the road when atrial remodelling etc is in play. Im not completely convinced that applies to my AF as stated already. But im not sufficiently knowledgeable about things to go against doctor advice. I guess ill have to just go for it and maybe i will 'probably sail through' as one doc said.

jondeanp profile image
jondeanp

I recently went through a similar dilemma, but ended up having a flutter ablation.

I was initially diagnosed with AF in December 2013 and was treated once with DC cardioversion, once with flecainide in A&E and once my heart reverted naturally after approx 8 months.

When my heart went out of rhythm after last cardioversion it was then diagnosed as flutter. On all occasions of AF/ flutter the condition has been persistent. The longest period of NSR during this period was 2 years

My periods in AF/ flutter did not really cause me any concerns apart from limiting my exercise regime. Quality of life was good

The EP recommended having a flutter and AF ablation done at the same time but i elected to have just the flutter ablation done due to the higher success rate. My engineer head told me to try and eliminate one potential issue before attempting the riskier procedure. What i really wanted was just to be able to walk in and just get cardioverted each time i went out of rhythm

Once i was on the waiting list i debated over and over again whether it was the right thing for me.

So far (its only been 2 months) all is well with no issues seen.

If i have to make the decision now for the AF ablation then i would still struggle to decide. Higher risk of complications, longer recovery period and potentially further ablations down the line all need to be weighed up against current qualtity of life.

UScore profile image
UScore

Yeah, to echo CD's point above, you don't know what is going to happen to the NHS. When I deliberated ablation I also wondered if techniques would improve (or new ones be invented) in 5 or 10 years. But what if the NHS stops dishing them out?

I initially postponed my ablation, but then after 6 months I decided to take what's on offer rather than gamble on the mystery box.

I would say my ablation, which was also at Bristol Heart Institute, was about 100 times easier than I feared. If I need a second I'd not hesitate. I had septoplasty a couple of years ago and that was much worse.

Qtmcfluff profile image
Qtmcfluff

Thanks for your reply jon. Last year after cardioversion i went for my follow up appointment and doc suggested ablation. I said i would consider it but probably wouldnt go through with it. That night i went back into AF and saw the same doc in hospital the next day! I worry something similar will happen again if i cancel this op. I think i know why i went into afib twice last year in terms of triggers but who knows what new triggers and life events are round the corner. I am already well into my supplements thanks to examine.com and so can't really improve things there.

Qtmcfluff profile image
Qtmcfluff

Thanks uscore. Who did your ablation at bhi?

UScore profile image
UScore in reply toQtmcfluff

Dr Palash Barman. I'd had a different EP in previous appointments, but he was the guy on the day. It went well.

KMRobbo profile image
KMRobbo

Hi Qtmcfluff

What you are considering is really risk versus reward:- is it worth the risk to become less likely to get AFIB in future? Your problem is that you do not consider yourself to be in such a bad situation, so for you the current reward on offer is less than someone in permanent AFIB whose life is really badly affected, but the risk is the same? i.e. less reward for the risk.

I think however that the decision is really more complex in that you have to really judge whether you want to risk deteriorating further and potentially getting more AFIB which could cause some re- modelling /damage to your heart which may be avoided should you have an ablation now.

Also you are quite young - as you get older will there be more risk to having the ablation?

Other than Warfarin - are you taking any other meds? if so do they not cause you issues? if you are not are you likely to need them in future?

I am assuming you are having a pulmonary vein isolation?

I am not a doctor so I cannot advise medically, and I certainly cannot make a decision for you.

However what you are considering now is what I was considering between July & November 2017.

I was diagnosed A FIB September 2015 aged 55. I may have had it previously but was unaware as was marvelously asymptomatic - I have been running at 220 to 243 bpm (highest recorded) and could not actually feel anything odd - I only knew because my Garmin GPS /HR monitor told me so. In fact I only discovered I had AF at all was because of the Garmin. (Please note I am not an endurance athlete - I run 4 or 6 miles once or twice a week , plus 25 or 45 miles on the bike, to keep the weight off and keep fit. )

I could not tolerate beta blockers (eg bisoprolol) so ended up on 120Mg Verapamil daily. It was only slightly intrusive to my life mostly reducing my exercise tolerance a bit which I was not happy about, and with a bit of experimentation with GP and Cardiologist approval I ended up only taking only 60Mg per day. Hardly any problem at all. Furthermore I somehow discovered during my 3rd AF episode, that if I went running during the AFIB that after 7 to 10 minutes of 180 + my hearts natural rhythm during running (whatever that is) took over and my HR would drop to 150bpm (my normal 4 -6 mile HR) . when I stopped running it reduced to my normal 70-BPM NSR Magic!

Unfortunately 22 months later (I think the 11th AF episode) the magic stopped working. Despite running and extra verapamil the A Fib would not stop so I spent 8 days between 130 and 190 bpm resting HR , still largely asymptomatic (no pain or breathlessness) but after 8 days I was exhausted. I was eventually cardioverted on the Coronary care unit of my local hospital by Flecainide infusion, and ended up taking 50 mg flecainide twice daily and 200mg diltiazem ongoing . Those drugs (probably mostly the diltiazem) have had a much bigger impact on my life in terms of giving me brain fog and massively reduced exercise intolerance (max Hr 137 which is painful to attain anyway). However I am sure life is still not so terrible compared to others with this condition.

However in November I saw an EP and he said I was a candidate for an ablation and described the risks - i assume you have had the risk list from your consultant.

After much pondering I decided that I had got worse over the 2 years and two months I have had AFib, so it was only going one way. After the 8 days AFib stretch, my echo cardiogram report had said "trivial mitral valve regurgitation" and "Mild left ventricle hypertrophy" - none of which is a disaster or unusual for a 57 year old BUT I do not think I had either in 2015 at my previous echo. Consequently I decided things were heading south so it was better to have the ablation now rather than later, and get a chance at getting drug free. I had the PVI ablation 29th January . No problem. Week off work - went back for 2 days , 3rd day (9 days after ablation) my heart went haywire - bad extremely noticable arrhythmia and very breathless - completely different to previous episodes. After 24 hours I went to A&E ( as advised my my EP) and ended up spending 2 days in hospital being diagnosed with Atrial flutter, which is in my right atria and nothing to do with the previous ablation. The flutter was not present when the first ablation was done. (I am sure I have never previously had flutter owing to the massive difference in symptoms). I was very lucky with appointments and after 2.5 weeks in bed (I was not much use for anything else) with HR 140 ish, I had a further ablation for the flutter on the 26th Feb which has removed that.

Where did that flutter come from??

Not the PVI ablation so I think it developed either as a result of the AFib i have suffered over the last 2 years OR as a result of the drugs I have had to take to combat that Afib. No-one has been able to tell me why it suddenly started.

Currently I am 5 weeks past the second ablation and am due to come off all drugs in another 3 weeks. I have had no arrhythmias since the last ablation but suspect I will only know the success of the initial ablation when I stop the drugs. I am told the flutter will be fixed as that is a 95% success rate as compared to the 70% success rate I was advised for the PVI.

At this point I think I made the right decision. Even if i need a 3rd ablation to "mop up" anything that may remain after the PVI I will still think it was the right decision.

The ablations themselves were non-events, relatively minor pain especially on the Cryo PVI., I had no groin issues nor serious chest pain. I am still tired after the second ablation but I think that was more likely the 2.5 weeks with 140 BPM that wore me down (and the lack of exercise for the rest of my body). I have improved over the last 3 weeks. The first ablation did not tire me one jot.

I do not think that the EP/Cardiologists are worried, from their point of view, whether you do or do not have the ablation . From what I understand from this forum there is a big demand for their services (in the UK anyway) , so they will have other work! So you can only assume you have had an honest assessment from your consultant.

With hindsight I would do something different:- by initially finding a way to manage the AFIB via exercise I effectively hid the frequency from the doctors. (I was just trying to keep away from hospitals and drugs!). But if I had reported the issues I may have been offered an ablation earlier which may have enabled me to miss out some of the more recent problems.

But then again I may have refused any ablation offer because I was not really being affected at all by the AFIB at that time..….back to your dilemma!

Clearly you have a different history - much longer with AF - and you probably have different issues and worries.

Whatever you decide will be the right decision.

Best of luck with that decision

Many regards

Qtmcfluff profile image
Qtmcfluff

Thats all useful info Robbo thanks. I too was puzzled when i went on a rowing machine aged 22 and the heart minitor read over 200. I only understood why a year later when diagnosed. I lost a good chunk of my teens and twenties living with af without realising, struggling with exercise and feeling tired but not knowing why i wasnt the same person i was when i was younger. There is a chance that i can be AF free after ablation so i have to go for it really, but its not an easy decision.

azriverrat profile image
azriverrat

Have you checked for some of the main triggers of afib such as sleep apnea or thyroid changes. Also low magnesium and potassium can also be trigger, such as in the heat all day and not replaceing them etc. Probably not but do you sometimes binge drink. These things are some of the most common triggers or causes.

Does afib just happen any time the few times it has. Or do you remember any common things at the time. High stress times, over exertion any other thing those few times may have in common?

edit: Also people like runners or cyclists that are more hardcore into cardio workouts are also on the list. aka anything like major sustained activity. Into any type of sports hardcore?

sue13hils profile image
sue13hils

I had my second ablation last August. Before I had it I could not walk very far was of work felt very ill now 7 months on I feel great I walk up hills. Healthy diet. My first ablation lasted 9 years. I hope this helps you

Qtmcfluff profile image
Qtmcfluff

Thats good news sue. Azriverrat i have seemed to into AF during periods of emotional stress in combination with other factors (sudden extreme exeecise being one). I dont go into AF easily which is why i haven't many episodes. However its also not easy to control the triggers that get me there. I have assumed AF was behind me numerous times in the past, only to be humbled once again.

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