I have had paroxysmal atrial fibrillation since May 2023 and have had 2 ablations. 1st was cryosblation, second was atrial flutter and pulmonary veins re-do wirh radio frequency. After first I was AF free for 9 weeks. Usually get AF 1-4 x per weeks lasting 1/2 hour to 12 hours. After second no more flutter but no change with AF.
At F/U told would not consider a further ablation. It would be of no benefit and may set up L atrial flutter. Advised pace and ablate was only option. My choice was say yes or continue with medication and accept my AF burden.
Joined in a post on here a few months ago and then I cardiologist in world-leaded centre who recommended in this order:
1. Change of medication- feel better on it but AF much the same
2. Third ablation: pulmonary vein redo, ablation round superior vena caps and then if needed trigger AF and do work on ‘atrial substrate. Discussed L atrial flutter and this cardiologist saw this if it happened as step in right direction and sorted by L atrial flutter ablation.
3. Pace and ablate: This cardiologist said he could treat me on NHS.
When GP wrote requesting he consider this referral, I received a letter saying that they can do the ablation described above locally, and there was no need for referral.
I am perplexed about what my cardiologist said he wouldn’t do it and now says he can.
Can I ask what people’s experience has been of a third ablation? What was your outcome?
Has anyone had ablation of ‘atrial substrate’ and what was the outcome?
Thank you for sharing your experiences.
OceanPaddler
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OceanPaddler
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Does sound like a change of mind by your cardiologist. If you're going to have another ablation (any ablation in fact) the most important thing is the skill and experience of the EP who is going to do it. If your cardiologist is changing his mind because he now thinks he might be able to give it a go, then I personally would be a little hesitant. In contrast, the other EP in the world-leading centre sounds as if he is very experienced.
Sounds a difficult conversation to have. Perhaps the question to him is why has there been a change in opinion? Then take it from there. But confidence in your EP is key and I would struggle having the necessary confidence in someone who has changed their mind, regardless of reason.
Remember that NHS England allows you to choose where you want to go - search "Your choices in the NHS" and "Choose and Book".
Regarding atrial substrate ablation, all that means is ablating somewhere which is a less usual origin of the crazy beats which kick AF off, or circulate via. The standard places are to isolate the pulmonary veins (PVI) (usually a cryo ablation these days), also the right atrium cavo-tricuspid isthmus (CTI) (from where common right atrial flutter flies), and sometimes the left atrial inferior PV (LIPV) isthmus to the mitral valve (which 'can' stop left atrial flutter). Places which probably count as "substrate" include a "floor line" or a "roof line" at the rear of the left atrium or the rear wall itself of the left atrium. Mapping of errant electrical circuits during ablation can reveal these and other places too.
I had a 2-stage first ablation where they did PVI then the CTI and LIPV as well as a rear wall and floor line, and 20 years later I had a roof line completed and an area near the left atrial appendage. Pretty successful! These less frequent places are definitely needing an experienced EP, in my view.
Thank you so much for sharing your experience. Helpful to hear about your more complex ablation. My cardiologist has suggested another cardiologist in the team ‘has a go’ this next time. Yes, I think I need to be direct with my questions. How many have you done? How many were successful?
I live in Scotland so choose and book not available to me. Moving to England is a potential solution.
I had an ablation plus top-up in 2002, and one in Sept 2024. First+top-up lasted 15 years until my aortic dissection and a 14 hour open heart operation. Second one is settling down nicely.
I'm also in Scotland and successfully requested a specific hospital for my aortic dissection follow-up. Took a while to get the funding agreed, but it did go through.
What options do you have on where to go? Please don't post names here, but feel free to send me a private Chat message. I can possibly help with recommendations.
I also had a more complex first ablation by a very experienced EP. I had PV isolation, top line and box on rear wall as well as an ablation for flutter. I had no AF for two years afterwards, then it gradually came back but I have not opted for a second ablation. I have several comorbities and I am 80 now and would rather have a hip replacement!
The consultant couldn’t decide whether to do an ablation (a special one (?) as first ablation unsuccessful in Harefield hospital as too complicated for local hospital, but after 13 days of deciding they opted for the pacemaker. I have no regrets. Although obviously I have atrial fibrillation and flutter still, I’m not really aware of it any more and no more fainting light headed feelings
It was third time lucky for me. Same EP. 1st cryo, 2nd RF both under conscious sedation, 3rd was RF under GA. Had all three in one year as first 2 were unsuccessful. I'd been in AF for 20 years and it was a longshot! EP has said he'll do a 4th if required. Cardiolost and EP both keep telling me it's a case of when, not if. But 20 months and counting now.
I think each case is different. I'm 49 and they wouldn't do pace and ablate at my age. I was in heart failure and the period of NSR now has reversed that.
Having segued from paroxysmal via persistent to permanent AF occasional syncope faits resulted in a pacemaker. Hooray. I am now on my second (they typically last up to ten years) I have never had or been offered a cardioversion or ablation and feel great sympathy for those reporting multiple ablations (and their failure).
I realise that we are all different and like Tapenac am unaware of anything going on in there and very thankful for pacemakers.
have had AF for over 20 years but refused an ablation as I didn’t wish to damage my heart. Had heard of so many failures in those days and many had to have pace and ablate due to damage.
I was on Flecanide and warfarin plus other tablets until eventually my heart started slowing and making me faint so they offered pace and ablate to avoid medication problems, I opted for pacemaker only with thinners etc and since then I’ve been fine. Would recommend a pacemaker every time it gives you confidence, also as I read one day on here…. Ablations don’t stop AF permanently it finds its way back later.
Thank you for your post. I am glad you found a solution that works for you. Yes if i had a slow heart rate, I would want a pacemaker.
My cardiology team said that only a lucky few get ‘relief’ from just a pacemaker. It is people whose sinoatrial node (the heart’s natural pacemaker in the atrium) is not working optimally (having slow heart rate would be an indicator of sinoatrial node nit working optimally).
My team advised they would put the pacemaker in and see how things are for a month. If ventricular heart rate still irregularly irregular/ very fast, they would do AV node ablation. They explained this is needed because the AF messages for the majority of people will continue to pass through the AV node from the atria to the ventricles.
They said the AV node ablation is needed for most people to disconnect the rhythm in the atria from the rhythm in the ventricles.
The need for AV node ablation is about the heart’s electrical circuits. It is not about damage caused by ablations.
There may be other people like me weighing up pace and ablate or a further ablation. I thought it important to share what my team told me about reason why AV node may be needed.
I had 3 ablations. My third resulted in no a-fib for the first year, one a-fib episode the second year, and last year I had 9 episodes. I'm to see my EP late February to talk about a fourth ablation or other considerations. I hope this helps.
I’ve had 3 ablations, 2007, 20012 & 2022 (1st & 2nd by same consultant EP different one for last)
I am always horrendously ill for months after each one but when I pull around I’m ok but for a few blips.
My last one apparently went over PVs again, back wall & roof (virtually every where I think). I was ill with one thing and another, went into HF and the options were to try to touch up with ablation, pace & ablate or nothing. P&A was not what I or the EP wanted. I went away to think, but then miraculously I went back into NSR, got fit as a fiddle went back to work for a while (which did prove too much). HF has good & bad days, but the way I currently feel after a blip 2-3 months ago - I’m enjoying life to the full again.
I had private health cover so could choose my EP & hospital. You could always browse Bupa consultants, read their portfolios then see if Gp will ref to one of those
In England Forum members have reported that only 2 ablations will now be offered, and your Scotland based Cardiologist seems also to be initially adhering to this rather simplistic guideline. I realise he changed his mind but it might be worth asking if Scotland also has this "only 2 ablations" rule.
Here's the England guidance as implemented by Barts London ...
Yes, while Forum members often report multiple ablations in their history, both successful and unsuccessful, this may well be a thing of the past for new AFers. It seems cost is forcing limits on these procedures.🤔 Or perhaps too much of scarring that then causes inflammation? But the article also mentions an appeals process for unusual circumstances. This new guidance is also unexpected because recent advice, for best results, an ablation is best done earlier rather than later.
Good luck with your questions to your indecisive cardiologist.
hi Ocean, Iv had three pvi ablations for AFIB. the last one in 2018. I was doing well until maybe last 18 months. I am still getting episodes of AFIB every now and again nearly always in the early hours. Duration from 30 minutes to 3 hours.! My new cardiologist I’m now seeing seems a little hesitant for a fourth ablation and thinks I won’t benefit.!!!
Without sounding disrespectful a cardiologist is a cardiologist and not a electrophysiologist so I’m trying to get a referral back to the cardiologist for a referral to a EP to see what he/she thinks. My recent echo a year ago showed slightly enlarged left atrium (expected with AFIB he said) and a structural normal heart and valves.
I’m glad I had all 3 of the ablations because I’m sure I’d be in a worse place without them.? I’m still working full time and living a happy life although struggle a little with my AFIB anxiety.!! I actually get more anxiety with ectopic heart beats than my AFIB. I wish you well my friend.👍
I had 3rd ablation in August 2024, EP quite confident it wd work but offered a 4th within a month if not. Cardioverted week later for bad AF. Other EP who carried out previous cryoballoon ablations (which were still intact) advised against 4tb as AF moved to right side and harder to treat.
I am now in/out of NSR and thinking I have flutter as HR increased and feel as you do….undecided if it’s worth just one more try at ablation or are we setting ourselves up for more disappointments.
All the replies you have received are very informative and glad to have shared them through your post. Please keep us informed if your decision.
Thank you so much for your reply. Interestingly, I am much improved on Diltiazem and Flecainide. I noticed episodes were often after meals so made some dietary changes too. Had AF with viral infection recently. Have have 2 weeks without AF which I haven’t had since after first ablation. Meeting cardiologist in a few weeks to discuss. So still thinking.
cardiologist called me today. Organising monitor and follow up soon. He is letting me keep open mind for now. Sticking with flecainide and bisoprolol with possible change of meds in future and like you, referral to Arrythmia clinic for ablation if that’s my choice.
All sounds positive with your present medication. Me sometimes thinks Why Rock the Boat …..all depends on what those faulty signals have in store for us.
I am posting an update. I had an open and helpful discussion with my electo-physiologist today. Interestingly I have only had one ablation for atrial fibrillation and one for atrial flutter. In the letter when it said ‘PVI’ this was not Pulmonary Vein Isolation but checking that pulmonary veins were isolated. He agreed second ablation should be offered. He is asking his most experienced colleague to complete it. He could see I was much better on new medication and agreed pacemaker and AV node ablation not right at this point.
So asking for the second opinion was really helpful. Thank you all too for sharing thoughts and experiences which helped me feel confident to challenge the pacemaker and AV node ablation at this time. It is something I will consider if it is right in the future.
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