So after much thought, and today's appointment with a cardiologist at a dedicated atrial fibrillation clinic, I have decided to consult with an EP and subsequently schedule an ablation. They have convinced me that I am better off doing it now before my heart remodels in any way, as my episodes are few and far between at the moment, though severely symptomatic and intense in nature.
I'm terrified of course. I know at my age it is likely to be a successful procedure, but the small chance that it will make my condition worse is quite troubling to me. Of course, if I do nothing the idea that it will become worse over time anyway is there. Medication alone will not prevent the remodeling. It feels there is really no good alternative so I must try. Anyway, this is what I was convinced of today in the discussion with the doctor. I previously had decided to wait and see, as it could be 20 years before my AF worsens enough to be more frequent. The shear terror of the episodes (extreme AF with RVR) has made me feel I need to act.
I plan to ask the EP how many ablations he has performed. I am told they do cryoablation at this facility, anyone have any feedback on that? Or any other questions I should ask the EP to feel more comfortable in his hands? Thank you in advance for any advice you can give me.
Disclaimer (once again) I know about Dr. Wolf, I do not need any further information about it. It is unfortunately not a feasible option for me at this time.
Edit, adding some ECGs below to illustrate the various different things I am dealing with.
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ChasMartin
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I had an ablation done 10 weeks ago, and I feel great. I'm a similar age to you (51). In terms of the procedure, it was no problem, just a few pre op nerves.
Recovery period, I just took a week off work. I haven't had any feelings of being lethargic, tired, felt fairly normal. Wound site in groin was a bit swollen and tender for about a week.
I've only slipped into AF once, and that was a month ago, after taking a Nurofen (Ibuprofen) for sciatica pain. Converted back to normal rhythm about 90 minutes later.
Like you I was advised to get it done before my heart remodelled.
I'm still on the daily Flecanide and Diltiazem, this gets reviewed 12th December, in about 3 weeks.
So from my point of view, I wouldn't change a thing, I think I made the right decision.
I’m not medically trained so I’m only expressing my understanding of the views expressed by others who are. Provided someone with AF has done everything possible to improve their lifestyle and does not have other health issues which could cause AF such as thyroid problems or sleep apnea, the sooner an ablation is carried out after diagnosis, the better the outcome.
As with most procedures, there are risks associated with ablations and here in the UK, ablations on the NHS tend not to be offered that quickly. As I understand, the health system in the US is very different and perhaps patients need to be more cautious as to whether an ablation is being offered for the benefit of the patient rather than something else. I have little knowledge of AF with RVR, so really cannot comment.
Again, as far as I know, MiniMaze type ablations tend to be carried out on patients who have more persistent AF and I’m not sure that there much difference in their success rates compared with a conventional ablation for patients with paroxysmal AF.
In the UK, Cryoablation is often tried first because it is a quicker procedure, often carried out under sedation rather than a GA so has slightly less risk than an RF procedure. However, it’s not unusual to need a follow up RF ablation because the expanding balloon used in Cryoablation might miss parts of the pulmonary veins if there are any irregularities in the their shape or tissue.
Ask for statistics which can show their personal success rates rather than those of the clinic but I think members who are more experienced with the US health system are better placed to help you. Hope this helps, good luck….
You said: " my episodes are few and far between at the moment, though severely symptomatic and intense in nature". May I ask you to describe it in more detail...? I am kinda researching AF, like all of us here are, so very interested in details...
We have people here, with very frequent bouts of AF and with permanent AF too. If your bouts are far apart and there is an expectation that you would have another 20 years before things worsen, why rush? Can you imagine, what new procedures or cures for AF may surface in this period of time!? Only in today's post, someone has reported about the new mapping procedure for ablations.
I am 70, was researching AF for about 15 years, so pretty well oriented in this field. If you read about cardiac arrhythmia in the Internet, you will see that when in A-Flutter, the demand put on the heart is up to 300 bpm. When in AF, this demand is from 300 to 600 bpm. Is it strange, that the heart can not achieve it!? It gets mad, the signals are generated from different points, it is trying to fulfill the task, but with no result. If the demand for such high BPM is gone, the heart reverts to normal operation (NSR). What I want to say is, your heart is maybe completely sound, but sometimes exposed to insane demands from the control system, hence AF bouts. Why would you burn such heart from inside!? It is irreversible, you can not repair it, but can get into such situation (like some of the members here did), to be told that they can not burn it any more, because it is too damaged by previous ablations.
Of course, it is only my opinion. Up to you to decide...
I was just throwing numbers out with the 20 year thing. None of us has any way of knowing how long it may be before we progress. It could be next week that I start getting episodes multiple times a week. It could be a year, it could be 5 years.
The problem with my episodes is that my heart reaches sudden dangerous speeds, 200-300bpm. (Ventricular rate) They are extremely painful, and I have experienced fainting.
I’ve tried many things the last few years to try to stave off the episodes (diet, vagal, supplements, exercises, so many things), but they still come at this intensity. And those rates are not much effected by beta blockers!
Even so I do still have all the hangups that maybe I should wait for a better treatment to be developed, among other things you mentioned. I go round and round with it in my head. I feel the danger of my extreme rhythms converting to something like vfib and/or ending up in cardiac arrest is something to factor in. It’s a difficult choice.
Chas I think you are making the right decision with those sorts of HR and believe it is very much a benefit:risk assessment which only you and your EP can make with considerations to your particular circumstances.
In AF, people usually report HR of about 160-200. Some have reported 220,...250, what really is high. At such high HR, the heart is practically not pumping the blood, hence the pain and the fainting. Not easy decission to make, I understand you, but also not easy task to give the advise...
It is a scary thought - I am getting a cryoablation in December. I’m in my late sixties, though just diagnosed this year. Although on Dronedarone, I had monthly episodes lasting days.
I had a cardiology appointment arranged (NHS), also had a letter to say that I had been referred to the EP. So the cardiology one was cancelled.
I was offered an ablation with a 6-9 month waiting list, so decided to go on the list at least. I worried that it was taking a sledgehammer to crack a nut! Had some shorter, but more symptomatic episodes, change in medication etc.
Then 5 weeks ago, the PIP (Flecainide and Bisoprolol) failed to get me back in rhythm. Stuck in persistent, though the rate is lower, and very glad that I went on the list. Yes, I can carry on with most things - but hills and stairs are awful. Not out of breath, but no energy in my legs. I live in a very hilly city, and my exercise is walking.
So, I’m crossing fingers and taking the plunge now. I would say striking while the iron’s hot, but it’s a cryoablation 😂
I’ve tried so many things I couldn’t begin to list them. But here goes. I know about Carr, which Jean mentioned, tried that (vitamin D, low calcium, cranberry). I have done strict low FODMAP, still do though not as strict as I did at first since I found the specific things that trigger my digestive issues. I eat small meals. I take magnesium. I haven’t drank any alcohol in 2 years. I’ve done what I can to try to fix my gut bacteria. I’ve had endoscopy and colonoscopy to check for gut problems and hiatal hernia. All clear.
I’m at normal weight and healthy. I have no heart disease, all clear echos.
I’ve seen you mention that ablation made your condition worse, do you have a post where you shared more of your story? I would be interested to hear it.
I have tried so many things, and I got my hopes up many times in my lulls that maybe I found the solution, but then an episode shows up to knock me on my butt to show me who’s boss. I don’t know what else I can try.
Forgot to mention my father died in his 50s of congestive heart failure though he was not diagnosed prior with arrhythmia, he complained of his heart for years without ever seeing a Dr. My grandfather had a stroke in his 70s and had diabetes, I am unsure if he had any arrhythmia that might have caused the stroke.
So the cards are stacked against me there too I think.
Sounds like your doing well. How long have you been eating healthily for? Sounds like you also have family history though so let’s hope that skips you by.
Yes it’s made my symptoms worse. I wish I’d never bothered. I’m having big issues last few days which I may do a post about if it doesn’t clear up over next few days. Going to phone my arrhythmia nurse tomorrow and maybe doctors as well. I’m not sure if I did a post about my issues. I’ve written loads of messages about it if you look through my history but I’m not sure if I did a post about it. I was in a pretty dark place for a long time and I didn’t come on here at all really once things started to go wrong. I’m still not in a great place now to be honest and this new thing I’m experiencing now is a little worrying.
I may be biased because I’m one of the unlucky ones but seriously do not mess about with your heart unless you absolutely have too. Exhaust all other avenues first and put every last drop of energy into it. It’s just not worth it if things don’t go to plan believe me.
Hi - it is a difficult decision and a thought process I remember going through in 2013. I came to the same conclusion ie: how would I feel after I had ablation? How would I feel if I didn’t ? I decided I was far more likely to feel bad if I hadn’t taken the opportunity, even if it made things worse.
After the ablation, after a few weeks of feeling better than I had felt for years, AF came back but I can blame only myself for overdoing things - because I felt so good. I had a second ablation 12 weeks later and that left me AF free for more than 3 years which was wonderful. When AF did return it was much less symptomatic until age and other conditions meant that QOL once more declined. I was in my mid 60’s before ablation and struggled with the meds which meant my AF was uncontrolled and causing syncope and was becoming intolerable with 3-4 episodes a week which could last anything up to to 72 hours so not much respite. Had I known about ablation five years prior, I would have taken it.
What I am attempting to say, rather clumsily, is there are no guarantees but in retrospect I do not regret for one moment the decisions I made. The procedure itself I found interesting rather than scary once in the cath lab, as I was awake for some of the time but the pre-procedure time I managed to somatise up all sorts of symptoms to stop me being able to take the procedure I was so scared! Luckily all the swab tests returned clear so no getting out of it!
If your EP thinks you are a good candidate you really have very little to lose and a huge amount to gain so I wish you long lasting NSR.
Thank you. I’ve been trying so many things for years, and each time I might think I found something because I feel really good for awhile, an episode shows up to crush that notion. It seems I’ve exhausted my options at this point, hence the decision to consult with the EP on ablation. I too do not tolerate medications well, and honestly I’d rather not be on them if I can manage. The blockers specifically effect my QOL so much with fatigue and such, and seemingly do nothing to lower the rates my heart reaches during an episode.
At this point after all I’ve tried, I keep thinking, imagine if it works!
PS - re cryoablation - please know that some people have unusual atrial physiology so cannot have cryo balloon, I of course head to be one of those! RF catheters are often used to ‘touch up’ areas the balloon is not able to reach. Talk to your EP about this.
I've had 3 ablations all RF but am still in constant AF. My rate does not go too high now, perhaps up to 100pm. How I wish someone had told me about lifestyle changes before I had any scarring done to the inside of my heart. Would I have listened - probably not or would have done it half-heartedly. Artificial sweeteners were a sure trigger, but I found this out too late really. Even now my generally healthy diet has big lapses with doughnuts and biscuits. I'm always sorry after I've eaten them and think why did I do that. I guess a lot of us do the same thing.
A man called Steve Carr has completely cured his AF by diet and a good vitamin intake. Let me know if you want the link to his story of how he did it.
Hi ChasI ,too,had a similar dilemma. I felt that ablation seemed a dramatic response to my paroxysmal AF and AFlutter,as I was usually able to self revert to nsr.I read up on ablation and basically put a bat up my own nightdress worrying!
I was very symptomatic ,taken into hospital with mad rates and passing out when I had episodes but still fancied my chances of holding out on ablation.
I was not on anticoagulants at this time ( wrongly classed as Chadvac 1)
You.dont mention if you are?
It was only when I had aTIA that I was swiftly put on!
I was given flecanide and bisoprolol to use as a PIP,this worked quite well for sometime during covid pandemic. But it didnt hold progression back in the end,despite my best efforts.
I was offered cyroablation again and accepted ,with a wait and see attitude from me. I knew there was a big backlog so would have time to still consider if I was doing the right thing.
Like many people ,suddenly it all got out of hand and I had 2 x5/6 weeks of constant AF Afl. That certainly made my mind up!
I had done my research and had been on nhs list under a certain EP but on the day it wasnt him. ( I think its different in the US)
Equally competent and I have been in nsr ever since Day 1 June st 2022,apart from a small blip.
No problems at all and I feel better than fir years.
My CHAD score is actually 0. They won't give me PIP as my episodes are too short. They explained to me that because my episodes are less than 2 hours, the pills would not even have time to work before it resolves. They have only put me on rate control (which actually does no rate controlling as far as I can tell other than a 10 point drop in my resting and exercise heart rate, no change to episodes).
I should probably add that the cardiologist I spoke to yesterday offered to put me on flecainide, but I declined until speaking to the EP. I would like to further explore with him whether it is possible that I am experiencing the very rare occurrence of "spontaneous" 1:1 conduction that can occur without flecainide, considering how fast my rates are. I read so many things saying that this sort of rate is not usually atrial fibrillation, but more atrial flutter with 1:1. I don't want to try flecainide as I worry that if that is the case, I would have a very bad reaction to flecainide considering it itself rarely causes 1:1 conduction (in absence of a beta blocker as they say, but still). The paroxysmal nature of my episodes has made it impossible to get any official recordings at the heights of them, the highest I have been recorded at on 12 lead ECG is 176.
This would also effect where they would focus ablation for me, so I need to discuss this with the EP, as to whether when they do their testing prior to ablating, that they would see whether this is the case or not. I need many reassurances! I have a list of questions I am adding to.
What I'm essentially saying is I feel I have two conditions. AF and whatever exactly this ultra fast beast is, as I have experienced very clear lower rate AF on a few occasions as well.
Ultra beast sounds like Atrial Flutter,good news if so,as ablation has very high success rates (95-99%) resistant to drugs but zapped easily.Wishing you the best ,keep in touch please on here x
Yes please do not take flecanide without a betablocker,my first hospital admission did that,and I was blue lighted to another,better,hospital within a week with new presentation of AFlutter.Cheers guys lol!
This does sound quite similar to the way that mine has progressed quite suddenly. The PIP took two days to work the first time, and hasn’t worked at all with this episode. 5 weeks and counting - so I have assumed that will be me until the ablation. On daily Flecainide and Bisoprolol to keep the rate down, but can only take the smallest dose of beta-blocker or my resting rate drops too much.
Did you actually revert after those 6 week episodes, or did it need a cardioversion? It might give me hope if it’s possible to come out of it - though I’ve not long to wait for the ablation.
Thanks! I’m so glad that I’m lined up for one soon. I had been told to attend A&E for a DCCV if the PIP didn’t work in 6 hours, but it turned out if meant if the rate was still high. An extra Flecainide brought the rate down - so it never happened.
I’m still a bit terrified, but the idea of finding stairs and hills too much forever is spurring me on! Otherwise I could get into a vicious circle with inactivity.
Yes indeed,we can dwindle away if not careful!I whittered away to anyone who had the stamina...shall I/ shant I?..including on here,so totally understand your thoughts.
The only 12 lead I have close to the height of the episode (but only at 176bpm), taken 30 minutes after the Apple watch recording I just posted, by EMTs.
On another note they just called to make the consult appointment, and tried to schedule me with the EP that has been there only 2 months and graduated last year. I demanded one of the more experienced docs.
Update! Now let me add even more fun! My last episode was a month ago. Tonight I ate a little more for dinner than I normally do, (I just wanted to have some of the homemade pumpkin pie my spouse made) and shortly after dinner I started getting a bit of heart jumps and bumps.
I ended up seeing a new arrhythmia recorded on my Kardia, I’ll post it in a few here. During it I had the same symptoms as when I have the ultra fast rhythm, sense of doom, feeling as though I will faint any moment, burning pain sort of feeling in chest etc. Kardia clinician review deemed them short runs of ventricular tachycardia and strongly suggested forwarding to my doctor and heading to ER if it is sustained at all. It hasn’t been, as usual it resolved fairly quickly, less than 40 minutes of the short runs here and there. I forwarded it cardiologist but who knows when I hear back with the holiday.
I never have seen this many of these wide beats like that in a row, normally I might see one here or there. I even had asked the doc about them yesterday and he explained to me those single wider beats were aberrancy.
I find these traces fascinating as they're what I had recently (vtach) as I already explained. Now with medication, my V-tach's gone. If it returns, I think an ablation will be the next step, so I'm interested in how it goes for you. Do you know which ventricle it is? Could it be the left v Outflow tract?
No idea, was the first time I caught a recording of it, or so I thought. I did look back and find a few shorter runs of VT (8 beats or so) on Apple watch strips from last year. I will update on here as time goes on. My stress echocardiogram is on the 15th, my EP consult is on the 30th!
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