Report of today's consultation with my EP Cardiologist - I can have one more ablation

Dear all,

I had my follow up appointment with my EP Cardiologist this morning as a follow up to my last (5th) ablation September 8th.

My visit did not start well as I could not get into the car park and had to park about ½ mile away on a 2 hour parking bay. When I got to the outpatients department I found they were running about an hour late so I soon walked back to my car and moved it into the hospital car park. Not a good start to a heart consultation.

My EP confirmed that, in his professional opinion, had the ablation in September been successful I should have been AF free by now. As I have had 6 episodes with 2 cardoversions in this time and they have occurred at approximately 2 - 3 week intervals the conclusion is that it was not a success.

Contrary to statements made on this forum before my EP consultant stated categorically that, with modern technology, if AF does not stop within 3 months of an ablation then he would not consider it to have been successful.

The options for me are now as follows:

One more ablation (number 6) with only a 25 - 30% chance of success.

A pacemaker and AV node ablation.

Put up with my Paroxysmal Atrial Fibrillation - with an ever increased frequency.

I have opted for one more ablation as I am highly symptomatic in AF and the fact that there is an outside chance this might work for me. Unfortunately, I am not too confident given that non of the previous 5 ablations have been a success.

I am very reluctant to have an AV node ablation and pacemaker as I know that the Atrium will still fibrillate even thought the heart rate will be controlled. I am also concerned that with my immune system being so sensitive there could be a chance of an allergic reaction. I am concerned that as there is no way back from this procedure and that, should I get a reaction, this would result in a living hell. The doctor did, however, say that he was unaware of anyone having a allergic reaction to a pacemaker. I will have to think long and hard about this option.

Interestingly he said that should I eventually decide to have the pacemaker then they would install the pacemaker first and not do the AV node ablation until about 6 weeks had passed and the effectiveness evaluated.

He also advised me that the conduction within my heart was not as he would like and that I may well need a pacemaker anyway to control my normal heart rate in the not too distant future. This was a bit of a shock. He has taken me off Bisoprolol as this drug slows the heart and my heart is not fast enough anyway. I have been taking Bisoprolol for about 20 years combined with Flecainide.

Apparently the 25 years of AF I have suffered has resulted in heavy scarring of my heart. I thought this note on my previous discharge letter was referring to the scarring caused by the numerous ablations but apparently this is not so and it is scarring from having so much AF over the years.

I am now running out of options which worries me as I am so symptomatic when I go into AF and during these episodes life becomes extremely hard.

I asked about the two 'new' procedures:

1. Low-Level Transcutaneous Electrical Vagus Nerve Stimulation. This is still in the evaluation stage and it is very early days and is not an available solution.

2. Removal of the nerve endings in the heart. This is the procedure pioneered by Dr Sabine Ernst. My EP told me that this is not a common procedure yet and that this procedure is also still in the evaluation phase.

Well there you have it.

My knowledge has increased but sadly all the many hours in the Cath Lab has not yet given me the peace of mind I have wanted for so long.

Pete

41 Replies

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  • Hi Pete. I am sorry to hear of your dilema and I really feel for you. Although limited I suppose you do still have some choices but not easy ones. Sometimes it is easier to have no choice and to have to do whatever is advised. I have had 1 unsuccessful ablation and one that had to be aborted as the needle used to pierce the septum , pierced the aorta instead and panic stations ensued. My E.P. will not attempt it again so I settled into a life on high dose of flecanide and was fairly happily resigned to this when a stress test showed that the flecanide was widening the QS complex. I had to go on a reduced dose but this is keeping the AF at bay which it wasnt pre ablation. Does this mean that the original proceedure was partially successful? If so, it only became successful over a year later. I guess you have had enough ablations to have well and truly tested out that theory though!

    Anyway I wish you all the best with your decision making and will be interested to know what you decide and why.

    Jane

  • Although I have been on Flecainide for about 20 years the EP said that if I presented today with my heart condition he would not prescribe Flecainide as it can make matters worse for patients with my current condition. However, as I have been on it for so long and seems to be providing some control this is all we have.

    Pete

  • Did he say what he would prescribe instead of Flecainide

  • No for me there is no alternative. Amiodarone would be an option but it makes me feel rotten and has other side effects that would make it unsuitable for me as an option.

    Pete

  • I did read somewhere that Sabine Ernest is doing a different type of ablation I think someone on here had it done I don't know if it could help you maybe you could email her and ask

  • Thanks for the idea I appreciate your interest

    I spoke to my consultant today about Sabine Ernst.

    He said her technique is still work in progress. I also believe the work she is doing favours those who have not had AF as long as I have.

    A shame as I am running out of options sadly.

    Pete

  • I'm very sad for you Pete, can't think of anything truthfully positive to say but I hope someone with a pacemaker can, and I'm sure we'll all be hoping for an unexpectedly good outcome next time.....

  • Thank you for that post, Pete - I'm sorry there is not more positivity for you from your EP. Opting for another ablation may have a good outcome - even if it only reduces the symptoms - but there is a chance of corralling the signals once and for all and I think you are right to go for it. All fingers on this forum will be crossed for you, I'm sure.

    Regarding an allergic reaction to a pacemaker, can any trial implants be done to assess your immune system's response to them? Hopefully others with pacemakers will be able to give advice and encouragement in this area.

    I send you best wishes and a big cyber hug.

  • What a dilemma for you. It's a difficult choice but you are favouring another ablation which I hope gives you some relief. We are all hoping one of the new trials bears fruit, something has to give soon with the research and effort clever people are endeavoring to bring to fruition. Keep your chin up.

  • I saw no option than to say I would have another ablation.

    I thought, say yes, and then if I chicken out I can say no in good time as there is likely to be a 3 -4 month wait for the procedure anyway.

    In addition his words were that doing nothing was not really an option and it is too soon for me to accept a pacemaker.

  • Thanks for your support Finvola it is much appreciated.

    The EP said that they would firstly implant the pacemaker. They would then leave it in situ for about 6 weeks and check how it is working. Then they would ablate the AV node. So for that reason I suppose I would be able to evaluate how I am managing with it in place and if there was a reaction before the big AV node ablation.

    I must admit that even though I have had numerous cardioversions and 5 very long ablation procedures I am very scared of having a pacemaker and the thought of a foreign body in my body does not fill me with joy. I know that it is routine these days but this is one thing that I have been dreading and up until today thought I might get away without a pacemaker.

    Pete

  • Those who have never had an ablation must not see this as negative as for 80% plus patients first time ablation solves the problem once and for all. I am one of the 20% and probably it is an even smaller percentage of patients for whom it has not been successful.

  • I am up to 4 or will be. The 20% is for ablation 2. By four it is much much smaller number and where you are at even less.

    So yes we are unique.

  • Oh Pete, what can I say! I'm sorry to hear that your EP believes that your last ablation didn't solve your AF.

    Yes, I'd go for another ablation if I were you. I may well have to go for a fourth as my third hasn't worked either. I must say though that since having the third I do feel a lot better. Did your 5th make you feel any better at all?

    I wonder how AF can cause scarring in the heart? Surely skin has to be broken to cause this and I don't think AF tears anything in the heart, does it!

    What a minefield it all is. I hope and pray that another ablation will cure you.

    Best wishes

    Jean

  • Thanks for your support Jean

    I have agreed to the further ablation. Yes my 5th did make me feel better on the good days in between each episode but the symptoms are bad when I am in AF.

    Never heard of the scarring myself before so that was also a bit if a shock.

    Yes it is a minefield especially for us armchair experts.

    Pete

  • Goodness, Pete, you sound to be between a rock and a hard place after that consultation. How to make a decision on how to proceed with the options you've been given doesn't seem to present a lot of choice for the better, I really feel for you.

    I hope you aren't facing this alone but have family and friends to support you and talk through things with you. Right now I just want to add my voice to all those who have already posted, to wish you all the best for whatever you decide to do. Kate

  • Hello

    Yes my wife is very supportive. We have been married for 46 years in April and she is not only my love and rock but also my best friend. She suffers from very bad Arthritis so we lean on each other.

    Will go for the ablation for now and then see what happens next.

    Pete

  • I'm sorry to hear this- quite worrying for you as options reduce. Have you thought about asking for a referral to Sabine Ernst for one of the new treatments. I was very impressed with her low complications figures when I met her

    I hope you get sorted out,

  • Hi Pete - So sorry, not good or easy choices. Let us know which way you go.

    All I can offer is that my husband had a pacemaker for SSS a few years ago and it has helped his quality of life enormously, and had absolutely no reaction, having said that, I can relate to your fear of foreign body implant and believe that we sometimes have intuitive insights which aren't based on reason or fact but can be a source of invaluable information to us. I know I had a similar reaction to several drugs and experience proved I had good cause to be!

    How do you think your immune system wouod react to a foreign body? Is there anyway of checking this through research literature?

    Any invasive procedure has that possibility of aggravating the immune system and causing a reaction, including ablation. It could be just coincidence but symptoms of my autoimmune condition started immediately after ablation No2 - it could have been exacerbated by Flecainide & Bisoprolol also.

    We are so complex and everything is linked to everything else that getting a wholistic overview of what is your best option or your least worst option may take some processing so give yourself time to do that and come to terms with the information you have now.

    I cannot take any heart rate or rhythm drugs because of autoimmune condition so I am thankful for everyday without AF as I used to also be very symptomatic, but am much less so since 2nd ablation. I don't have any good options, should the AF become progressive - I would need IVIG just to have the sedation or GA for a further ablation, which my EP has suggested may be possible if episodes become frequent and symptomatic again.

    Bummer isn't it?

    Sometimes there just are no easy answers and accepting that can be hard.

    Best wishes CD

  • CD

    My worry with the invasive nature of a pacemaker is my experience 3 years ago when I had a severe skin reaction to the ECG and Cardioversion pads that lasted nearly 6 months. I had Urticaria all over my body that was so bad that the only respite I had was to have a cold shower or sit in ice cold water. For two nights in a row I could not sit or lay down in bed and spent the whole night wide awake standing up as the soles of my feet were the only area which did not have a rash.

    My EP says that the pacemakers are made of titanium and he has never heard of an allergic reaction but unfortunately that reassurance doesn't right now give me enough comfort to accept the pacemaker option.

    Thanks for your help.

    Pete

  • Hi Pete, i am thinking about you and hoping that the next ablation will be the one that works for you. My best wishes Kath.

  • Hi Pete,

    I had an ICD fitted in August. My ICD sits just under the skin and has wires that lead to the heart.It does a different job to a Pacemaker but the box looks roughly the same size and presumably made of the similar material.

    I have had no issues with rejection however I did have 3 bouts of AF within 4 months that had fixed with Cardioversion. Doc says the AF attacks are unrelated to the ICD.

  • Thanks for the information.

    Forgive my ignorance. What exactly is an ICD.

    Pete

  • It's a Implantable Cardioverter Defibrillator.

    It can be programmed to react to certain life threatening heart arrhythmias. It's job is to monitor the heart and pace the arrhythmia out and if that fails shock the heart (I am assured that by the time it shocks me I will be unconscious anyway!)

  • Sounds very clever and very scary.

    Thanks for the information.

    I know that pacemakers are routine my skin is hypersensitive so that is one of the reasons I am scared of having one fitted together with the finality of having a mechanical device controlling my heart.

    On the other hand I am 70 next birthday so I guess if push comes to shove and it becomes a matter of quality of life then I may have to go for it.

    I still have plenty of thinking time so for the time being Carpe Diem must be my catch phrase.

    Pete

  • I think you have made the right choice. Who knows, the procedures that are not on general offer now may well be if the 5th ablation doesn't work.

  • I think it will take another 4 months before I get my next (6th) ablation. Then I will have 4 months before my follow up consultation. Then if that ablation is unsuccessful and I opted for the pacemaker option then it would be another 4 months.

    So all in all I have about a year to think about it.

    The main problem with pesky AF is it plays on my mind and so I need to try and keep occupied with other things to try and take my mind off of this. Having endured it for nigh on 26 years nothing changes does it.

    Pete

  • I know some swear by a wolf mini maze or some version of that. it is done by a surgeon and not an EP or sometimes both. Burns and or cuts from outside and inside.

  • Done with open heart surgery. Mentioned when I had my cardioversion on Christmas Eve but not mentioned by my EP.

    Another option that does not fill me with joy.

    I may well ultimately opt for the status quo seeing I have been like this since 1991. Haven't got used to it but it is what it is.

    Pete

  • Hi Pete I can't add any personal experience with what you are going through..I just wanted to wish you well with it all.

  • Thanks Steve

    I appreciate your support

    Pete

  • As RosyG suggested, it would be worth trying to get a referral to Sabine Ernst. You have nothing to lose and in your shoes a second opinion woukd make sense.

    I would add that i had my ablation in November 2013 and took 5 months for AF to stop. I am still AF free

  • Thanks lallym I appreciate your input.

    I did ask my consultant about Sabine Ernst but he said that her work is still in the early stages and to a degree dismissed it as an option. I must admit I did not ask directly if he could refer me. Having said that if I am still in trouble after the next planned ablation I could perhaps ask again as time will have passed again.

    Interesting about your 5 months for your AF and to stop and now you are AF free. I know Bob says 6 months.

    However, my consultant was adamant that with the technology they now use I should have stopped by now. I have had AF every 2 - 3 week since the ablation in September.

    All a 'b' nightmare really I am so weary with it after nearly 26 years of PAF.

    Pete

  • I am really sorry you feel so bad. Could you afford a private consultation with her. Or as someone else said try emailing her. I know nothing about her but if she has a new approach you have nothing to lose by talking to her. And getting a second opoinion is always a good idea if you are being given bad news and limited options.

    Good luck 🍀

  • I have some time to try communications. I have my Consultant's secretary's email address so maybe will send a letter to him in the first place.

    The hospital I attend is also one of the centres of excellence for Heart conditions in the UK NHS and therefore I have so far taken the view that I am getting the best care.

    The thing is that technology moves on. When I first had AF ablations were not even an option.

    Trouble is I am not getting any younger and I sometimes feel this is becoming an obstacle.

    Between bouts of AF I am as fit a a fiddle and despite being over the official retirement age I work freelance most days of the week and do not want to become a person sitting in a chair doing next to nothing just because AF has got the better of me.

    Thanks again for everyone's support and input I appreciate it greatly.

    Pete

  • Dear Pete - I'm unable to offer anything as helpful as our lovely friends here, but just want to add my good wishes. I'm also very sensitive to anything and everything - so maybe we were meant for one of those parallel universes. Really good to know you have great support at home.

    Very best wishes.

    Pat.

  • My third ablation last year also included ethanol infusion in the vein of marshal to target aka kill some nerves. Afib seems finally gone. Do not know if it is a similiar concept even if done differently. As said for afib seems to have worked.

    BUT. still need a forth ablation scheduled for the 19th to hopefully get rid of the last flutter (s).

    I know I can take too much out on my wife. At some point you become your own support group.

    Tell random friends you have afib or flutter it is like i saw a pill on TV for that. I hate drug companies advertisements now.

    Hope all goes well. But as aid unfortunately after some point we become outliers.

  • " I am very reluctant to have an AV node ablation and pacemaker as I know that the Atrium will still fibrillate even thought the heart rate will be controlled. "

    Sort of why on to ablation 4 myself. A previous EP suggested ablation and pacing. But even he I think thought as bad and continuous as my afib was at the time my hearts upper chambers would still blow aprt for simple terminology. aka heart failure among other nice stuff.

    Though abate and pace may have made me feel better while it happened.

    Thus vein of marshall ethanol infusion plus regular rf ablation on number 3 that has seemed to work for the afib. Now number 4 for remaining flutter.

  • Yes all very confusing.

    The fact that I understand that the atrium will still fibrillate is also a reason why I am reluctant to take this course of action.

    I need to think a lot before I accept this option.

    Not the best situation to be in.

    Thanks for your comments azriverrat

    Pete

  • Can't offer any real words of wisdom other than to say try to stay positive as at least you have options, even if not ideal.

    Whichever you go with I hope you have a good outcome.

    Best wishes

  • There are a great number of pacemakers implanted around the world and I have never heard of anyone having an allergic reaction apart from many years ago when some were made of stainless steel. For the last 40 years they have all been made of titanium and if anyone had an allergic reaction to this it would be headline news. So of all your problems this is the least you have to worry about.

    It sounds like you need one anyway, for sinus node disease (which often goes along with AF), and it might even prevent the AF from starting – especially if your attacks usually start at night – as it would prevent the long pauses between beats which can be a trigger for AF.

    You don't have to proceed with the AV-node ablation: I have found about 1-in-5 of people with AF feel so much better with just the pacemaker, or this combined wit some heart slowing meds, that they don't need the ablation.

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