Experience of ablation for persistent AF?

[Rainfern]

I’m on the (long) waiting list for a first ablation, with quite a low level persistent AF since last November. I’d be grateful to hear from anyone else with persistent AF who has had an ablation, and if there was any measure of success. I know the statistics don’t bode well, but they wouldn’t be offering it if there wasn’t some hope! So while I wait they’re trying a holding operation - amiodorone with a second cardioversion coming up in 2 weeks time.

[KiwiBlake]

Hi Rainfern. At my worse, I was getting AF every 3 or 4 weeks during a period of emotional stress for a terminally ill family member during which I was on Diltiazem and Flecainide. That then settled down to approx every 6 months once the family member passed away. I had a cryo ablation last September. No regrets, I appear to be settling down to having AF only every 6 months or so. I am considering that a sucess as my quality of life has improved dramatically. I am however on the waiting list for a touch up RF. Any reduction in AF burden I consider a good thing.

All the best. Blake

[Rainfern in reply to KiwiBlake]

Thank you Kiwi, I’m glad your treatment was a success. I think the persistent AF that I have is distinct from paroxysmal AF. At the moment, I don’t get episodes of very rapid heartbeat and only mild palpitations by comparison with many people here. My resting heart rate goes between 72 and 85. However, the heart is constantly in AF despite my heart being sound in other ways as shown on echocardiogram. The symptoms I have include breathlessness on hills and discomfort in my chest at night. When relaxed, I can feel my heart beating funny most of the time! So what I’m wondering is whether an ablation will simply reduce the AF so that it becomes paroxysmal in some way, or if there’s a chance of a complete cure.

[Gumbie_Cat]

You maybe know from my previous posts that mine didn’t work out. I was persistent from October, then had the ablation in December - and it only lasted two days.

However, if I had my time again then I would definitely have tried the ablation. As I was part of a study, I had more imaging beforehand and a longer ablation while an EP study was carried out. All under sedation, and I found out they had done some radio frequency as well as the cryoablation of the pulmonary veins.

I suspect there was quite a bit going on there, and although I felt that things had progressed so rapidly, it’s likely that fibrosis had built up over time. (Unless it was partly the Covid in October, I will never know.) The study is looking into whether there are different types of AF that could be detected, even prior to ablation - looking at more types perhaps than simply the ‘three Ps’.

Anyway, it means that I won’t undergo repeated procedures to no avail. If I had different news then I would be lining up for another.

We are all so very different in the mechanisms of A Fib, so that’s why I’ve not ended up anti ablation, even if it didn’t work for me.

I would say that things are more settled for me now, and I don’t get as light-headed etc. I can plod uphill and up lots of stairs - just rather slowly while my heart catches up with demand!

[Rainfern]

yes I’ve read your previous posts and I’m impressed by how you face up to adversity at the same time as supporting others! A lesson to all of us I think. It must’ve been very disappointing at the time to find the ablation procedure is not for you, and this forum has taught me generally to keep philosophical and not expect miracles!

I can see how it might be possible in the future to accept and accommodate ongoing AF. I’m already accustomed to my husband doing most of the work on our allotment these days! But it makes me feel a bit lazy! My older sister also has AF with very few symptoms and she has no intention of undergoing any procedures. As you say, we’re all different. It will be interesting if the study you were involved in identifies more forms of AF.

[Gumbie_Cat in reply to Rainfern]

Thanks so much! To be honest there were a lot of tears at first, and I still get somewhat grumpy at times. But there are people in the forums with far more going on with their hearts and general health. My husband does most of the work, full stop 😳

[Rainfern in reply to Gumbie_Cat]

😂

[Hidden]

Hello Rainfern, treating persistent AF can be more challenging but there are good many on the forum who have done well and don’t forget, the majority who have a successfully ablation tend to disappear and get on with their lives. I was diagnosed with lone persistent AF in June 2014. Later in September, I had a CV which lasted for almost a year. As it started to falter, I was prescribed a maintenance dose of Flecainide for just over six months whilst waiting for a Cryoablation. I was able to stop the Flec but after a year, episodes started to occur due to the fact that there had been a problem treating one of the pulmonary veins it came as no surprise to be put on the list for an RF ablation to tie up the loose ends. All was good for around 7 months when AF started to break through. When first diagnosed I had a mildly overactive thyroid but it was felt that it wasn’t likely to be cause but now it was more overactive. I had Radio Active Iodine treatment which got it back in range and the episodes stopped and I was taken off the waiting list for a third ablation. So since September 2014, with one CV, two ablations and occasional use of Flec, initially as a maintenance drug, then as PiP, I have been lucky enough to have remained in NSR. No Flec has been necessary for around 4 years. We are all different, and therefore react to treatment differently and it is recognised that persistent AF can be more difficult to control than PAF. If you have health insurance or are very wealthy, there are other options to consider but for thousands, the ablation route has helped them lots. Good luck.

[Rainfern]

Thank you Flapjack, that’s really good news to hear. Long may you continue in NSR!

[MummyLuv]

hi Rainfern, I see on your profile you are symptomatic so they will try and treat rather than just control your afib. You mentioned success rates, you might like to watch these short training videos that discuss persistent afib treatment paths and success rates for each. Where in the UK are you? As flapjack says mini maze and hybrid whilst more successful for persistent are more difficult to access on the NHS, but not impossible if you are in England your EP/GP can refer you.

[MummyLuv in reply to MummyLuv]

healthunlocked.com/afassoci...

[Rainfern in reply to MummyLuv]

Thank you MummyLuv, I shall watch the videos later, for some reason feeling a bit faint today. Yes, the Afib is symptomatic and my EP definitely wants to put it right. It has been interesting to hear about the mini maze procedure that you and one or two others have had - thank you so much for sticking around to give hope for us persistent types! We’ll see what happens with the CV in a fortnight (first one worked 7 days) and ablation within a year. But meanwhile those amazing medical advances are providing a bit of light at the end of the tunnel. I’m SW England, but anywhere in UK is closer than Japan 😀

[2learn]

Hi, so far i've had 3 ablations and 3 cardioversions. The cardiversions all lasted for over 12mths. Only my current ablation has gone so long and when that flipped out it flipped back in when I had a covid jab.

[Rainfern]

It’s good you’ve had a few AF-free years following treatment. Bad luck with the jab. My AF started shortly after a booster jab last Autumn. Of course far more people get AF and other heart conditions with covid, but like my EP said with a vaccination programme that huge there was bound to be some shrapnel.

[JOY2THEWORLD49]

Hi

Before ablation if you have rapid persistent AF with over 100 H/R on REST (20mins quiet no moving or talking) and/or BP hyper

has specials offered you CCB Calcium Channel Blocker AM and BB Beta Blocker PM?

One blocks Calcium and one blocks Adrenaline which is over produced during stress and anxiety.

With a balance of these 120mg Diltiazem CCB AM and 2.5mg BB PM (my H/R Night is always avg 47) I have a Controlled AF.

123/69BP. 62-29 H/R

I am much improved from 120 plus H/R at Rest Day and BP has settled.

I now do not get over sweating, fatigue and exhausted in exertion.

Firstline is meds. Ablation scars your heart.

cheri JOY. 74. (NZ)

[Rainfern]

Thank you Joy. I understand about ablation scarring the heart - I have carried scars from hole in the heart op since I was 15, fifty five years! No ill effects, but always a higher risk infection could lodge there. They don’t think recent diagnosis of AF has anything to do with it. So I’ve focused on healthy foods which I love, cut out sugar and alcohol, kept a good bedtime routine and walked instead of taking car everywhere. I’ve done this for years and I hope it helps reduce risk. We never know though how things will turn out. It’s useful to look at alternatives on offer to us, so thanks for your suggestions. My resting HR stays below 100, flitting between 72 and 95. Sleep it currently goes as low as 52.

[Keano99]

hi, I had persistent AF for several months too and had a cryoblation, fortunately I’ve been in sinus rhythm since, for a year. I’ve worked at lifestyle and diet. I do have ectopic beats, but they are diminishing. I do have cardiac type symptoms, not whilst I exercise, but the day after, I still haven’t got to the bottom of that but I think I may have slight improvement recently………

[Rainfern in reply to Keano99]

So pleased to hear that your cryoblation was a success. Sometimes I think the heart has a memory of its own and slips into old patterns! Hence the ectopics and cardiac symptoms long after everything has healed. This was certainly the case after my heart operation as a teenager. Despite GPs and medics telling me I was fine, I continued to experience palpitations and odd heart beats from time to time for many years which were generally put down to stress.

[Afibflipper]

Hello Rainfern - sorry you’re still suffering the AF curse but, I’m hoping to give you a lot of hope here! I’ve been quiet on here recently as not wishing to boast but I have my life back!!!! My second CV last year I was on Flecainide & NSR lasted 4months. Nov last year 3rd ablation you may recall my story - became so I’ll for 4-5months post op but all of a sudden I’m positively saying I’m free for now and enjoying life so don’t lose hope even though it is so hard to think & believe normality exists - it can happen x

[Rainfern in reply to Afibflipper]

It’s so good to hear from you Flipper! I’ve been wondering how you’re getting on and it’s so good to hear that you’re back in NSR and so much better! Thank you for a big dose of hope. I shall take it with me to my next CV in 2 weeks!

[Afibflipper in reply to Rainfern]

I’ll be your little Jimmy Cricket on your shoulder willing you on to better things x

[Rainfern in reply to Afibflipper]

😀Aww thank you!

[SusieQ2023]

I have persistent a fib. Heart rate, controlled; blood pressure, perfect; arteries, clear. No diabetes or other risk factors. However, I chose to have four ablations. I hated the "Bird-in-My- Chest feeling! The longest period of time I went without AF was 1.5 years. That was 6.5 years ago. Since then, I have been cardioverted 18 times and have been on every antiarrhythmic drug available. In March, I was cardioverted twice, and after the second, I went on flecainide. AF returned with a vengeance. I went from doing an hour a day on a cross-trainer to not being able to walk from room to room. I was referred to a large US metropolitan hospital for tests and learned that I had a nearly completely occluded pulmonary vein that had been damaged by the ablations. Furthermore, I had pulmonary hypertension from the stenosis. Because this is ostensibly so rare, I finally had to have it repaired by a pediatric cardio surgeon. (Pulmonary vein stenosis occurs only in babies with congenital heart problems and in people who have had ablations.) My daughter is a cardiac nurse and warned me not to have the ablations. She said they never work for long. My EP told me the same thing, but, in my vanity, I didn't listen. My advice? Skip the ablation. I would never wish the fear and suffering I have suffered the last three months on anyone. The good news came yesterday. My EP went to a conference on pulmonary vein stenosis and pulmonary hypertension over the weekend and learned that the PH was situational, not the chronic, fatal type. So, today, on my 48th anniversary, I am grateful to be alive and ready to get back on my cross-trainer in six weeks. Good luck to you!

[Rainfern in reply to SusieQ2023]

Wow what a horrendous time you’ve had with ablations Susie. So unlucky. Your story certainly makes me realise that I need to do further research and background reading before going for this procedure. I think it’s highly unlikely they would offer me more than two ablations - the second for any corrective work needed. I think in the UK there is less drive within cardiac departments to provide repeat treatments. Like you I hate the bird in the chest feeling and particularly this hot weather it keeps me awake at night. I also don’t have the same stamina for long walks and stairs in particular. So I’m hoping the cardioversion will at least bring some temporary relief. But we have to be real about these things and it’s very useful to hear different stories. So thank you for sharing yours. Enjoy getting your life back and keep going on that cross trainer!

[SusieQ2023 in reply to Rainfern]

I am in the USA. No, here they will do them as many times as you are willing. Best of luck with the cardioversion. It always makes me feel better. I am going to have cardioversion July 17th to see if it was this pulmonary vein throwing me out of rhythm. I have to wait until I have been back on Xarelto for more than four weeks. Anyway, just a warning for those who have had pulmonary vein ablation: if you have symptoms of dyspnea, weakness, cough, sudden chest pains, etc., make sure that you have a contrast CT scan of your chest. It is the only really sure way to diagnose pulmonary vein stenosis. I suspect that many, many people have it and are still unaware because as long as they are in sinus rhythm, their hearts are able to compensate. Even if you ARE 6.5 years out from ablation like I was, get it checked. It's a killer.

[Rainfern in reply to SusieQ2023]

Thank goodness you had it diagnosed and it’s not the very serious sort.

Happy anniversary by the way!