I had 2 cryio ablations in 2019 and largely successful for 2 years. AF returned so back on Flecainide but NSR would not return without cardioversion. Flecainide upped and all well until radio frequency ablation was offered after a years wait.
Decided to go for it in August 24….was told successful and quite extensive but a possible 4th ablation could be performed soon to be sure.
One week later back in A&E with high HR chest pain, blood pressure rocketed. Another Cardioversion and all well until I started weaning off flecainide. January 25 and Back in A&E with chest pain breathlessness and high HR. Kept overnight and IV magnesium brought down HR. However tried to explain that I was fine resting but as soon as I got up AF kicked off again…..no Cardioversion this time as resting ECG in rythmn. So large dose of flecainide and added bisoprolol and home. I don’t tolerate betablockers so couldn’t function. Chest pain was unbearable so I reduced flecainide as it was making no difference.
My new norm is chest pain breathlessness and jaw pain on climbing stairs.
NSR has gone from 60 pre ablation to 90s and on exertion AF kicks in and heart SLOWS for 5 mins.
now awaiting cardiologist referral as I can’t go on like this. Verapamil mentioned by EP a few months ago so who knows.
Anyone find different cardiologists have divided opinions on Ablation success and also medications. Hard to decipher best plan of action
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Not really sure these days since ablations are limited to two by latest NICE guidelines but my AF was improved by my second and terminated by my third back in 2008. Chest pain is very unusual with AF so does need to be investigated.
EP that performed my 3rd ablation told me the previous 2 areas ablated were still intact but AF had moved to other side. His ablation was intensive and he thought successful but a possibility of 4th could be undertaken in a month if required. I thought it strange but never delved much into it but since read up on atrial tachycardia after ablation and now wonder if that’s my problem and he foresaw it.
After admission to A&E a week later, conflicting opinions surfaced. My original EP happened to be on the cardiac ward and he said forget about 4th ablation, if AF moved to other side it was much harder to treat…he had someone go for 9 ablations and that I should stick with flecainide, until it no longer worked, then accept my AF and go with verapamil then if all else fails it could be AV node ablation …although he admitted that at 65 i was bit young for it. General consensus from my hospital stay was, accept AF and go with the ‘rate’ approach rather than ‘rhythm’
My sister suffers from AF and we have gone down different roads..she accepted her AF and takes Atenolol betablocker. Never been hospitalised but does have breathlessness. I always wanted to eliminate mine and enjoy a reasonable level of fitness. I’m no athlete but I walk at least half hour every day.
I have always dreaded the idea of permanent AF as betablockers caused so much breathlessness when i was first diagnosed. I truly believe they are causing the chest pain too but no choice as HR too high to drop them. Verapamil seems a different type of betablocker so maybe it will be better.
Then there’s also that 4th ablation lingering in back of my mind 🤔 could it be that i have atrial tachycardia and it could be resolved.
Sorry for long post, just joined so I think I’ve got everything up to date now.
You might want to look into a surgical ablation such as mini maze, which often have success when catheter ablation do not. But if you do have another catheter ablation, see if you can find someone that the gangli plexi as well as the pulmonary veins. Some promising studies on this.
Thanks for the link and the new ( to me) info re CN Ablations.
However, I must be misunderstanding something, as the video mentions it as a treatment for refractory vasovagal syncope (elsewhere particularly in younger patients). For paroxysmal AF patients like me, and for persistent and permanent AF patients, without syncope symptoms, wouldn't the Wolf procedure still be a better choice?
Besides, the video mentions that to reach the "ganglionated plexi" the procedure still still uses a catheter ablation to ablate inside the heart.
Wolf can ablate the "ganglionated plexi" relevant to paroxysmal , persistent, and permanent AF from the outside of the heart, and this has greater appeal and relevance for me. And remember Wolf is a cardiac surgeon so his approach is not available to an EP, as you know.
Bob, I can just give you a lay interpretation and opinion -- beyond that you will have to do the heavy lifting lol
To me, it raises the question why has the wolf mini maze been arguably, more successful than catheter ablation for a fib. Could it simply be that Wolff simply ablates the GP? Because if so, maybe one does not need a surgical intervention anymore to do that and can get similar results with a combination PVI and Cardio neural ablation where the GP is ablated from the inside.
If this is so, and that's a big if, then it's really a matter of do you prefer going from the inside which is arguably less invasive than going from the outside, like with a WMM. Ep vs surgeon. Hopefully I will not have to make that decision since my ablation is holding up pretty well, but if I did, I would definitely want the GP ablated on the next go-around one way or the other.
Strangely, but I find the Wolf procedure much less invasive than catheter ablations. I refer you to Saulger's positive feedback in his Posts. And there are a lot of troubling reports about the known and unknown consequences of the micro emboli produced by catheters, and this is a big concern of mine.
Wolf believes all AF has the involvement of the vagal nerve and ablating "nerves" is best done from the outside of the heart. Saying that, he does have the assistance of an EP who does catheter ablations if such is a better option for a particular patient.
I'm sure you are already aware of these details, so I'm just hoping if my thinking is completely misguided, someone might share such knowledge.
There can be an argument either way. I ended up choosing catheter ablation for number reasons, including the fact that it did not involve general anesthesia which I do not tolerate well, but that does not mean it might not be the best approach for many. As to results, like Saul I am afib free and happy with my choice.
I see what you mean about the focus in the video about.refractory vasovagal syncope. I probably did not post the best video but I believe he has several others that I will try to hunt down or maybe you can find that is more focused on PAF.
Yes, I had already downloaded a few articles a few days ago when I first read your mention of a cardioneural ablation, but haven't had time to read them yet. That's where I noticed the relevance to younger patients. I will pursue this as you suggest.
Wolf still isolates the PVI veins, but from the outside of the heart, which is my preference. He states in his videos that the nerves (incl. ganglionated plexi) are on the outside of the heart, not the inside. So a catheter ablation will be burning through the cardiac tissue from the inside to reach the nerves on the outside of the heart? Still doesn't make sense to me, so I need to pursue these details further.
The outer layers of the heart, particularly the epicardium, are where the autonomic nerves (sympathetic and parasympathetic fibers) are located. These nerves are responsible for modulating the heart's rate and force of contraction. The vagus nerve (parasympathetic) and sympathetic nerves both influence heart activity. These nerves help the body respond to changes like stress or relaxation by speeding up or slowing down the heart rate.
Thank you, Gosh I thought I knew quite a bit about AF and different strategies but I’ve never heard of ganglionated plexi. Will certainly look into it all. Last time I saw my EP he mentioned there being a lot of new treatments but nothing specific so might be worth bringing it up.
My feeling is there is something different going on here than just AF and its associated symptoms. Chest pain and jaw pain on climbing stairs should be investigated properly, and such pains are not always cardiac in origin.
Yes, Verapamil, also Diltiazem, are alternatives to beta blockers for slowing the heart rate, and yes, different cardiologists can have differing views or emphases.
I can't tolerate BBs either, but Diltiazem and Flec together have worked well after my recent ablation.
My GP is chasing up cardiology referral and thinks a 24 hr monitor required. I should have mentioned that I don’t have chest/jaw pain when I first get up in morning. It only seems to happen a couple of hours after meds taken.i also suffer from TMJ problems. Wonder if stress part of it.
One more question… since reducing some of my flecainide theres a small rise in HR. Although it’s for rythmn, I’ve heard it can reduce HR too?
I don't know, sorry, it's not really changed my HR at all. It is supposed to have a small anti-vagal effect, which would slightly increase HR in theory.
It’s all a balancing act at times. I have high blood pressure too so keeping an eye on introduction of bisoprolol and reduction in blood pressure. Interesting to hear of other peoples journeys with AF and so many medication options. Flecainide has always worked reasonably well for me but in low/medium doses. I guess my AF has changed over the years and my last ablation procedure has possibly changed pathways. I have this picture in my head of all these faulty signals frantically finding some other way of getting through again.
Have you gotten another opinion from a different Electrophysiologist? Definitely what I would do at this point if possible. You can generally only get so many ablations!
Yes, spoke to original EP by chance after I was admitted to hospital after 3rd ablation…he said 3rd should be my last as afib now on other side and harder to treat. He differed from new EP who wanted to do a 4th.
Cardiology doctors …not all but in general we’re not in favour of ablations at all.
I will be brief, well I'll try. Factors: QOL, EP proficiency, insurance/money.
Meds no longer worked for me, and I'd moved to what was termed persistent AF, though not 24/24. The meds reduced the episodes to 6-8hrs @150 bpm instead of non-stop at 150-220 bpm, but episodes were daily.
My last ablation was my 7th. I had excellent EPs in Europe trained by the originator of ablations. The 4th worked for 2 years. All were RF and primarily PV (pulmonary vein) ablations with some gangliated plexi. They preferred doing less and more ablations than over scarring.
5th, RF ablation with more lines and right side for flutter
6th, RF ablation with cardioneuroablation CNA, retrograde aortic approach with COX lines, I left the hospital in Afib the next morning.
7th ablation was PFA (pulsed field), with 1 PV needing a retouch. The rest was more COX lines, and what was the major difference? The ethanol ablation of the Vein of Marshall and ablation points to the ligament of Marshall. I was in a clinical trial for the FDA approval of PF ablations. He was relieved to see that there was not abusive scarring done in the past, thank goodness with that many ablations. My understanding is the PF isn't crucial but if one is to have more ablations then it produces less collateral damage! The techniques of the operator is everything in my opinion.
Clearly I would not encourage anyone to take the path I did, but I must say that now 18 months later and no Afib, I am thrilled and grateful.
That you find whatever works for you is my only hope. We are a courageous lot!
So glad to hear you have remained AF free. And what a lot of procedures you have endured. I agree regarding scarring and the less the better with a skilled EP.
I sometimes wonder if I make too much of my AF. It’s so common nowadays and a lot of people are fed some pills and get on with life. (Ignorance can be bliss) but if meds cause terrible side effects then life can change dramatically.
We are indeed a courageous lot. I get funny looks when I tell people I have actually opted for burning tissue round heart rather than popping pills.
PS, because it is common, does not make it more bearable! Less, even, when you hear someone with mild AF and rare episodes, you can understand why they don't seek out more solutions. All that said, even mild is disturbing, to each their own!
Yes that’s true. AF must be one of the most complicated ailments ever. So many variations on areas affected, procedures and medication combinations. Not to mention triggers.
Roll on the day when someone invents a pocket size portable Cardioversion machine so we cd dispense with all the other stuff. Just zap these faulty signals.
Our choices are very personal... as they should be. The heart is a muscle, burns applied in great hands are no more than that... If meds work and they don't bother you, take the meds. They worked for me for a time, but increased in dose and eventually were not sufficient. I worked full time (still part time), self-employed, I was unable to work well (though I did) at those heart rates, hence my need for resolution. Lifestyle changes, did yoga, meditation, HR variability training, no sugar, gluten alcohol, dairy... tried them all.
I am grateful for all those changes but they were insufficient as well. Which is why I say circumstances, types of AF, all make it necessary to find the "solution" which works best for each of us. Many have had success with meds or lifestyle changes alone, hence I'd never jump to an ablation prior to trying. Nonetheless if one is going to consider an ablation, then do it sooner than later! I waited four years before my 1st ablation, that would be my only concern, but even in that delay, I learned other lessons, hence no regrets!
I wish I had a good answer but I feel your frustration having gone done the ablation path 6 soon to be my 7th time with only a modicum of success. I am less sure now than I’ve ever been about the benefits of any of these treatments. I have been battling arrhythmias for 14 years and had my first ablation 14 years ago. My most recent ablation was done by one of the top EPs in the world and it still did not work. And since I have structural damage there are few drugs I can take. The most effective has been amiodarone but it can only be used short term. My last option would be a Cox-Maze procedure but that requires surgery. I don’t want to discourage you but it’s important to approach every treatment option with eyes wide opened. There is no panacea. Maybe someday they will have a miracle cure but that day is certainly not now.
Thanks for your input. I too wish for a miracle cure but my original EP told me there is a lot of new stuff coming through but none of it any better than what we are working with now.
I hope your 7th procedure is successful. Please keep us posted. Good luck
have you consider a mini maze or hybrid minimaze procedure. The minimaze is performed by a cardiothoracic surgeon and the hybrid by surgeon and EP combined either in 1 procedure or 2 about 1 month apart.
It’s not the easiest to obtain on the nhs but is possible. Have a look At MummyLuv posts, mine and several others who have gone down this route.
Just checked out some mummyluv posts. I have always been camp (ablations) or anything that would ‘cure’ my AF. However as my posts above have stated I have become an ablation sceptic after hospital admissions and cardiologists doubt in the procedures.
It’s possible after 6months post ablation I have developed tachycardia (my own diagnosis…yet to see doctor) heart rate 60 preablation and now mostly in NSR of 90-100. Blips of AF when i exert myself.
I wish I had known more about maze procedures. I thought these were only carried out if you were having some kind of open heart surgery.
My EP who I have always respected, never mentioned the possibility I could be a candidate.
Oh I wish I had known 4years ago before we gave up private health insurance.
Very much in a quandary now but hopefully I see cardiologist in next few weeks, then I expect another wait for Arrythmia clinic and EP referral.
I had my hybrid minimaze on the nhs in Sheffield, I did pay for the initial consultation as my EP wouldn’t refer me. Many EPs don’t mention minimaze as they are unable to perform it. The majority of folks I know who have chosen mini maze in the England have also been NHS.
Its expensive privately in England and even more for if you go to Texas, but another alternative is Japan which I understand is very reasonable, take a look at saulger post he did a very comprehensive account of his journey to Japan.
Hope that all is well. I am now almost 28 months AFib-free and looking forward to the three year anniversary. As I always repeat myself, the total cost in Tokyo was that of a second-hand car. A great investment !
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