ablation or not to have ablation

Hi

I have posted similar before but am getting more concerned about ablation after reading all the post op reports from everyone and I could get called up anytime now.

I am on the waiting list for ablation ( after going into AF for 6 months which required a cardioversion and then regular paroxysmal AF one episode requiring flecanide drip to stop) and currently on flecanide rivaroxiban and omeprazole. I appear very well controlled with only occasional slight sob at rest and some speeding of heart rate ( only 80-90 instead of usual 60-70). I havent had AF for at least 4 months and go to gym regularly and lead an active life.

I am concerned that ablation will leave me worse than I feel right now! I am also aware that AF gets worse and the flecanide will stop working so well ( especially as I dont have many side effects - just slight sweating at night occasionally- unless its the dreaded menopause starting at 43 year old!!)

Wondered what everyone thought? Do I get it over and done with when I get called or do I wait until I get more symptoms before I agree to go in?

64 Replies

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  • You must know my view by now. Go for it and stop being a wuss. I have still to meet anybody who says they wished they hadn't had an ablation. AF almost always gets worse so best get rid of it while it is still thinking about that.

    Bob

  • Bob, sorry to put it like this, but you have no right to call someone a wuss just because something was successful for you.

  • Sorry my sense of humour is in overload today.

  • Not to labour a point: it isn't funny to have genuine fears and anxieties mocked in a support group. Bad enough that the medical profession don't take us seriously at times.

  • You are labouring it!

  • I am in the medical profession ha ha!! That's why I am such a rubbish patient!!

    Medical professionals never an opinion just advice of pro and cons and reasoning.

    We also have a sense of humour!!!

    Wonder if they would appreciate a vagazal jewels to make the groin more interesting during the procedure??

  • Maybe that is why you have concerns? May help to think through exactly what concerns you and then discuss with your specialists?

    Also natural to think the way you are right now - when I was actually in AF I would have done anything (well almost) to eliminate it from my life. When I was between episodes or the Flec controlled it I thought why am I bothering?

    Yes things did go wrong for me, I was left far worse after the 1st ablation so had a 2nd after 3 months - that didn't exactly go to plan either and I had a hard time recovering - turned out that was because I had Myasthenia so jolly glad I had the ablations as I now cannot take any AF drugs - but have not had so much as a ectopic since ablation No2.

    You have decide for yourself but if we did a survey asking those who have had ablations how would you advise yourself with hindsight - would you have or not have an ablation if offered?

    I can only speak for myself and the answer is YES.

  • My view is definitely go for it now. It does get worse and if it gets worse the chances of success get significantly lower. I was in severe persistent AF and when my EP said ablation is the only realistic option (and he put that in writing) and he stopped flecanide. I asked him to tell me honestly what the chances of success were likely to be and he said first time 0% (zero %) and that the only question was how long [hours, days or weeks]. Actually lasted less than 72 hours in NSR but those hours were bliss even though 24 of them were in hospital. Waiting for my second ablation now.

  • Go for it! your symptoms will almost certainly get worse, so in my opinion having it done may hopefully alleviate some of these horrid symptoms, it shouldn't make them any worse.

    Keep well.

    Wendi

  • I am keeping an open mind. I am fairly sure that if I saw an EP in the early days following my diagnosis, I would have been listed for an ablation. As things have turned out, like you, I have not had an episode for many months and I do not suffer from any major side effects from the drugs (that I know of).

    In the circumstances I don't want an ablation at the moment but my cardiologist has agreed to refer me to an EP should I change my mind.

    I have mixed feelings when reading of people's personal experiences of the ablation procedure. It certainly appears to be a case of "No pain, no gain". When I read the early reports, I think to myself "that sounds painful", then that person reports six months later that they are free of AF and off all drugs.

    I know that not everyone has a completely succesful outcome so I guess it is a case of weighing up how much you are suffering against the possible/probable benefits.

    My big worry is that AF will come back in a more aggressive way in the future when I am older and less able to cope with an ablation. Nevertheless I will take my chances, for now anyway.

  • It's not necessarily a case of "No pain, no gain" Craggy, although speaking personally, there was pain. It was the stab in the finger for the INR test. The rest was not painful at all.

  • I was expressing my perception from what I have read and your first hand experience will now also influence that. In fact it is quite re-assuring to hear. Thank you.

  • Seriously, the INR test was the worst bit! I found the standard of nursing very high and the cannula in the arm was expertly and painlessly inserted.

  • Oh dear that reminds me of the terrible pain I had when a student nurse tried many times unsuccessfully to insert a cannula. Staff nurse thought I was a good guinea pig but eventually took mercy on me. I'd forgotten all about that. Thanks for reminding me. NOT

  • Ouch. And ouch again and again.

  • Same for me Bob but from a new medic in AE....I seem to recall it was August so I could have been one of her Guinea pigs. Was left with purple hand.

  • EXACTLY what happened to Me Yatsura! Couple of years ago in A&E. Young junior doctor left me with a heamatoma the size of a tennis ball on my hand. Painful for weeks!

  • Hi Craggy. If the chances of a successful ablation for you were the same in two or three years time as they are today - then your argument would be perfectly valid.

    The reality I'm afraid is that they won't be. And it is likely that you may be suffering more symptoms and drug side effects than you do today.

    Regrets? You could well have a few.....

  • You may well be right and knowing my luck you probably will be.

    On the other hand we might see great medical advances which will dramatically improve outcomes.

    Whatever happens, this post has certainly got me thinking about it again!

  • Craggy. You also have to consider the effect that the various drugs have on your body both short term and long term. Even if someone has no or minimal side effects now they may experience worse ones in the future. With many of the drugs, as has been stated many times on this forum, they affect people differently just as the AF itself affects people so differently. In the early weeks after I was diagnosed with AF my GP said on two occasions that one key advantage about having an ablation was not being dependent (apart from anticoagulation) was not being dependent on drugs. One thing, amongst many, that I have learnt in the last year is that the human body is actually very sophisticated and so many aspects / features are interdependent and inter related and one thing going wrong can have a number of, and sometimes significant, knock on effects. It was only 13 months ago that I had a minor eye operation and both the pre-op assessment nurse and the anaesthetist quite separately commented that at 60 it was unusual not to be taking any medications / nor to have had any significant health issues. However they tempted fate and now I am making up for lost time the hard way!!!!!

  • Go for it of course! Whatever you might read in the posts of those that have had ablations regarding groin bleeds, pains in the chest etc, these are nothing, nothing compared to AF with a life sentence!

    Go for the early release - as soon as possible..... Like everyone who has the ablation, including the tiny minority who experienced complications during the procedure, you will not regret it.

  • I understand your point of view Anticoagulate but there are some in the minority who have complications so severe they definitely would regret it- it's important not to leave that out when people are deciding what to do

  • Two in a hundred!

  • 2 in a hundred would be too many for the most severe complications, which I don't want to list here as people are trying to make difficult decisions and they will ultimately do that based on their individual case which will have been discussed with their EP and cardiologist!

  • The most serious complication is a stroke though you couldn't be in a better place if you are extremely unlucky enough to have one during the ablation. Besides, that's something we are all at risk of anyway and the chances are we'd be nowhere near a hospital. Most of the other complications, even the serious ones, can be dealt with effectively by the hospital.

    Of course we should understand that certain life-threatening risks exist but we shouldn't overstate them. I could be involved in a fatal car crash tomorrow but I'm not going to stop driving. The risks are very small. The rewards on the other hand, for most people post-ablation, are immense....

  • I'm afraid this isn't accurate Anti-coagulate! There are more severe complications than stroke but as each person's risks, and each EPs competencies , vary I think those deciding on ablation need to look up all complications and ask their EP about their past complication figures. I think it inadvisable for those who fortunately have had trouble free ablations to assume they are all trouble free and encourage others who should really make up their own mind based on the information and figures about complications- in tandem with their doctors who have their medical details available.

  • You speak as though 'trouble-free' ablations occur in the minority Rosy. Ok, I accept that it may be necessary to have more than one procedure - I don't see that as an ablation failure; more the ablation process - but the large majority of those who have completed this process are AF free, often for many years. Perhaps even for life. And so many of those folk are no longer on this forum!

    It is 'troubled' ablations that are a minority and 'life threatening troubles' are a tiny minority.

    Folk will discuss the risks with their EPs and of course they must make up their own minds about proceeding. It doesn't happen without their written consent after all. But to wrongly scare them away from even considering this life-altering option is a true disservice to those who are thinking about it.

  • Anti coagulate- that's why I am not listing the complications- I would hate to scare anyone away from something that may well benefit them! Equally, to dismiss serious complications because they occur to just a few people, is not good practice! I have been seeking a balance so people look into this properly and decide, with proper information available, whether their symptoms and condition justify the risks.

  • I think we are probably quite close to agreement Rosy. I'm neither dismissing serious complications nor overstating them.

    They are very rare - that's all.

  • I am in the 'postpone it' group, which is the minority I know.

    My reason for postponement goes like this, firstly I am a wuss (to use one of Bob's technical terms), then the EP said only 70% chance of success with a second likely, thirdly procedure improvements are constant, next I am using my delay as a driver to get something positive out of AF by introducing lifestyle/diet changes that wouldn't otherwise have happened and lastly my cardiologist, having initially said ablation and seeing my improvements now agrees with me.

    That said the bottom line is very individual on too many factors to list but an overriding one is trust your instinct, you will know when to go for an ablation as your quality of life will push you there.

    Lastly don't worry about taking the wrong decision, you will never know as the alternative could have been worse. Hope something in there helps, good luck!

  • I could better follow your reasoning here if the "only 70% chance of success" were the other way round, i.e only 30% chance of success. I know statistics are devious and not to be trusted but if two out of three (if not nearly three out of four) ablations are a success, the odds seem pretty good.

  • Ummm...when I go into Theatre I like it to be 90%+ but that's just me.

  • Nothing is ever certain! I sometimes find myself in the less than 1% bracket (eg blood group AB negative which is about 0.6% I think) and it's somewhat unsettling!

    I think too that the success of an ablation should not be whether it frees you from AF. If it improves your situation, even if you need a further ablation, it is a big step forward.

  • My EP gave me 90% in writing, for the 1st & 98% success for 2nd. Individual circumstances and EP experience and compentcy apply, as Rosyg says.

  • Have the Ablation, I had mine end of March, am on no drugs whatsoever now and finished an Ironman triathlon with no problems 10 days ago!

  • Is this true Pommylump? I would love to know more if so. Having been diagnosed with AF in August, I have just given up my charity place in next year's London Marathon on the advice of my Cardiologist. I was gutted but think it is the right choice for now. I have just put out my first post on here asking about exercise and flecainide!!

  • Hi Yanbart, yep Ironman Lake Tahoe, I didn't go very fast though :) I no longer fuel myself on caffeine and push my heart rate as high as I used to. This is the first time I have just cruised around to the finish line. I was constantly checking rhythm was all good. Being in the USA and having no travel insurance for AF I took it pretty easy.

  • Well, anyone that can 'cruise' around an Ironman has my utmost respect straight away. Amazing. It is/was my dream to one day build up my fitness to complete the Wales Ironman. I'm afraid I might have left it too late now though...we shall have to see! Thanks for getting back to me. Yan

  • Being quite serious here for a change, it really is a personal choice. When I was first offered ablation in 2005 I turned it down as like so many people the sound of it scared me witless. The point there was that AF Association had not been formed and there was no resource such as this forum to help educate. Six months later and my AF had become more aggressive and I changed my mind and asked for the procedure. Had I accepted the inevitable and had the procedure a year earlier maybe I wouldn't have needed three. Nobody knows but in the end it doesn't matter as I have been fine now for years.

    People talk here of pain. Well we all have different pain thresholds I know but I never experienced real pain due to my ablation. Yes some discomfort but the worst bit on my third was a muscle spasm in my back which persisted all the time I had to lay flat and only shifted when I was allowed up to walk about and stretch. Yes some soreness in the groin for a few days and a little ache in the chest but nothing like the pain of a major operation. O K some unlucky people do have serious pain but consider this. About five thousand people have ablations in UK alone each year. The number may well be much higher now as my figures are quite old. This forum has less than four thousand members world wide and not all of those have ablations. You all do the maths and you will note that these unfortunates are really in the minority. Add in the likely hood that those with successful procedures don't often come back here and the picture looks much rosier.

    Yes it is right to be cautious but make your mind up based on good statistics. I have had several people PM me asking if I thought it OK for them to post about their own complications and difficulties and I never ask them not to as balance is important but always suggest that they do point out how rare these complications are. I still maintain I am more frightened of root canal dentistry than ablation.

    Bob

  • I had my first ablation 18 months ago, the effect was 12 months of totally normal life, the AF started to raise its ugly head around the 12 month mark and has very quickly deteriorated. I see my EP. On the 9th. Another ablation? I jolly well hope so, the first was a breeze, I was straining at the leash within hours, but even if I'm not this time, I know it will get better. I'm just very grateful to be living at a time when something can be done.

  • Howesgilly,

    if you decided not to have an ablation, you run the risk of the Af getting worse,

    I assume your in fairly good health at present?

    this may not always be the case as we get older we are more prone to illness, you may find that you may not be offered an abalation due to this...then what ? years of more medication, misery, being at the mercy of Af

    personally I'd take the risk (and did so in 2013) it was liberating and gave me back me life, I'd do it again and no I didnt enjoy it , but all it took was a few hours and the past two years have been great

    ps. in 2014 I was diagnosed with prostate cancer,I was able to have surgery to have this removed, this may not have happened if I hadnt have an abalation....

  • My AF sounds exactly like yours. I would have months free of it followed by a nasty run of episodes. I lost confidence and could not make plans because I never knew how well I would be.

    You are being offered a £15,000 procedure. They must be confident of an improvement to even consider you. Delay may be an option but do not discount this opportunity.

    Very best wishes.

  • Dear Howesgilly. I understand completely how you feel. My AF was paroxysmal and when everything was OK, I'd think to myself 'Why upset the apple-cart, things aren't too bad'. Then when I was in AF I was so miserable. I also had a long episode of about 4 months when I really thought I'd beaten it, but it came back. Mine was largely exercise induced and was gradually getting worse, although like you, my heart rate was always reasonably low even during episodes.

    I had my ablation in May of last year and I'm so pleased I did. I was anxious beforehand as I'm sure everyone is, but there wasn't anything to worry about and other than a couple of episodes a week or so after it (which they warned me about), I've been AF-free since. I hadn't actually realised how much it was impacting on my life until it wasn't there anymore. Like you, I'm very active (I'm a runner). So, I would say to you to get it done and don't wait for your symptoms to get worse. Also, I understand that the earlier they treat AF, the better the chances of success. Good luck.

  • Dear Howesgilly,

    I am in a very similar situation to yourself, my ablation will be anytime now, just waiting for a phone call. It is very hard decision to make, in the last few months I have started to regain my fitness (I had a previous unrelated health problem) and my symptoms have receded somewhat, and at this moment in time I feel great. So I also question the need to have an ablation or not. It has been on my mind constantly for the last few weeks.

    if you are going to the Annual Patient's Day, maybe you can raise the question in a general way with one of the EP's there, just a thought.

    Best Wishes

    Barry

  • I wish I had had your choice. In New Zealand you have to fail three different rhythm control drugs before they will even look at giving you an ablation. One didn't work, the next two put me in hospital in the last one almost killed me. 16 months on I'm still symptom-free. A F didn't control my life but it did stop me doing some of the more adventurous things that I really enjoy.

  • I had a cryo ablation in Feb 2014 and have never looked back. Every blue moon (maybe every 4 weeks) I get a spell of AF for which I take Flecainide as pill in pocket and it clears up usually within 2 hours. But compared to what it was like before with AF sometimes twice a day it's like night and day. I have ectopics which I had to get used to but that's a dream compared to regular AF. My experience is all good.

  • I am having the same debate with myself as you saw my GP this morning and he said MARIE stop being. A WUSS ( yes Bob he said it to) and get on with it hahaha

  • I don't have AF but my sister and 2 friends do. My sister's AF is intermittent and she's on dabagitran(?) and, one of my friends has a tablet she only takes when she has an episode and the third friend is on 2 or 3 tablets and refusing an ablation! She as read up and reseached about it and has decided, when they told her there was a 1 in 1000 chance of complications with the oesophagus sticking to the heart following the op, that she wouldn't take that risk. Whilst its her own choice, she will not be persuaded that she should have it done. I worked with someone who had two and in the end has a pacemaker so I know that it can sometimes not help everyone and a pacemaker is the end result, but my friend doesn't seem to be worried about the complications and problems that could occurr if she doesn't have it done.

    I worry for her :(

  • I don't think you are correct about the pacemaker 'as an end result' as many people live very well with persistent AF and have no problems.

    Pacemakers are fitted for numerous reasons and rarely purely for AF that I know of. My husband has AF and was fitted with a pacemaker. but that was because he has bradycardia - his heart paused for too long between beats. He doesn't take any drugs for AF and just lives with the occasional episode which is quite rare and he is not very symptomatic so it doesn't worry him.

    Any treatment is certainly a personal choice. I was very symptomatic with AF and the ablation was the best thing I ever did, only regret was not doing it sooner. All treatments carry risk and for me the drug option is far, far riskier than the procedure, long term.

    By the way a pacemaker was inserted with a local anaesthetic as a day case and took about 50 mins.

  • thanks, my friend has been told that she may end up with a pacemaker if she is still anti the ablation but she won't listen to anyone who's had it and its been successful :(

  • Hi I have now had 2 ablations, the second and last in April last year and I am 77. I have nothing but positive things to say and wouldn't hesitate if I were in your shoes and it was recommended. I had a short episode of pain in my chest but apart from that I rested for the first week and then slowly got on with my busy life. I only take Riveroxaban now and half a Sotalol very very rarely as a pill in the pocket. Today the sun is shining, life is good and I shall go for a brisk walk.

  • howesgilly - every worry you mention must be what goes through all our minds - certainly does in mine - when considering the best way forward with AF. It has to be a personal decision for each of us, I think based on quality of life, symptoms and our trust in the EP team treating us.

    But, you are only 43, if I read your post correctly - I'm 71 but if I were your age, ablation would be a much more preferable option (perhaps) to drugs.

    Best wishes - whatever decision you make will ultimately be the correct one.

  • This is the second similar post recently, the replies so helpful and reassuring to those

    of us who are waiting for Ablation. Mine 5 weeks away and as the time approaches

    the questions, doubts and apprehension increase. Being an active 67 year old I am

    scared it could 'rob' me of my mobility and stamina. But it HAS to be done, otherwise

    time will inexorably march on as it does and then where will it leave us?

    In Wussland probably. (sorry my sense of humour must be similar to BobD!)

  • Omg I woke up to 34 replies!!!!! Thanks everyone for your input.

    Yes Bob I am a wuss( and not offended in the least I found it funny). A dear friend does tell me to 'man up' regularly!!!

    It's a case of nerves ( as a nurse I am a rubbish patient ) and not wanting to rock a currently steady boat.

    However I am probably going to go for it as the comments have reminded me how awful I feel when In af and the intermittent sob and change in rate is probably af being controlled by flecanide I expect so I am probably not as stable as I would like to think.

    Thanks everyone. I am sure I will post this again when the letter comes through th door ha ha sorry Bob

  • I opted for ablation nov2013 and after quite a lot of erratic beats (may have been AF) it all settled down. This took about 5 months but since then all clear and no meds although stayed on warfarin. I had doubts and fears and did consider doing a runner as I waited to be admitted on the morning of ablation!

    Sadly there are risks but risks also if you are on lots of meds so no easy answer. Some people have reported success with altered diet and lifestyle and magnesium supplements so if you are really a wuss with lots of self control this might be worth looking at.

    Wishing you good luck in your decision making.

  • Further to my earlier response, I would just add that it is important to make a firm decision eitherway. if I did decide to have an ablation (after carefully considering all the pro's and con's) then I would go for it.

    I can't see much point in making a considered judgement decision and then having second thoughts, when the main underlying factors have not changed. It must be very unsettling to be stuck in 'no-man's land'.

  • I wish I had been offered it before my symptoms became worse. I had PAF for 13 years and then went into persistent AF which I had for about a year. They had to do lots on me because the AF was well entrenched by the time I was offered the ablation. Would have been a much easier job if done earlier. If I was offered this at your age I wouldn't think twice, there is no getting away from it, it is a progressive condition of which I was in denial for many years. At the end of the day it is your decision and you will get a lot of guidance from here. Good luck.

    Brenda

  • In the CONFIRM trial, patients treated with PVI plus FIRM mapping with ablation of sources of AF were compared to patients treated with PVI alone.

    The authors found that localized rotors or focal impulses were present in 97% of patients undergoing AF ablation. At a median of 273 days, 82.4% of patients receiving FIRM guided ablation in addition to PVI were free of AF compared with 44.9% receiving PVI alone.

    See the following for more information on FIRM guided ablation.

  • Interesting Thanks Dave for the post - would you know if FIRM mapping system is now used in UK or is it still on trial? This was 2012 film.

  • The closest hospital is:

    Erasmus Medical Center

    Ingang Thoraxcentrum, 3e Etage, Kamer BD 370, 's-Gravendijkwal 230

    Rotterdam, The Netherlands 3015

    Phone: 010-703 53 49

  • My ablation 2 months ago has been life changing. I still have the odd strange beat but gone are the days of 2 * 10 hour episodes per day, day in day out.

    I feel so much better than before and would have another tomorrow if I needed it.

  • Just as a footnote to this.

    Have spent the weekend either in af or bigemini ( every other heart beat is am ectopic), some sob. Had to take a pill in pocket for the first time in months.

    Think it's answered my original fears and question now!!!

  • Hi, I was very wary but had a successful ablation in 2009 and got my life back. My only regret is I waited 9 months to be referred because I was frightened of difficulties and possible complications. Good luck with yours.

  • Key thing is the words that a number of EPs and Bob have said. AF begets AF.

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