I had a cryoblation PVI just under five weeks ago at Basildon Hospital and all had been good, unti last night when I tried to get to sleep.
I have been told I have a mixture of AF, Atrial Tachycardia and Aflutter during my episodes. Leading up to the procedure, I had to point this out to the Arrythmia nurse during my pre op and again on the day, to the EP who was doing the PVI, which he told me, was for Afib. It wasn’t my usual EP who did the PVI on the day ( but a very experienced, highly regarded one nonetheless, so I was in good hands) but it was clear he was unaware I had all three arrythmias when I told him. When I asked him if the PVI for Afib, could ablate all three of my arrythmias , I was told the procedure ‘usually’ did.
I was told my PVI was very successful. It was apparently an uncomplicated procedure all four veins were accessed and it took only 45 minutes. I didn’t go into AF, a flutter or tachycardia but all areas were clearly seen apparently. He was very pleased with it.
Last night, after a bout of ectopics, I went into AF, for about 20 mins. HR of 140s and 150s with ocassional low 75s. Did ECGs on both applewatch and Kardia, both recorded AF. Then, I flipped into atrial tachycardia or flutter ( I don’t know ) and remained there for nearly four hours, before I reverted back into NSR. My sustained HR was at a rate of 130/132 of sinus rhythm. Applewatch reported no Afib, high heart rate. I didn’t Take anything extra last night, as to be honest, I’m not sure if I am supposed to. I could have taken another Bisoprolol but I chose not to in the end. I also have fleconaide, but I haven’t taken that for over two years ( after taking a large dose only once as a PIP).
I’m upset that I wasn’t given a specific ablation for at least my Aflutter and Afib combined.
I am not sure if anyone will be able to convince me this has worked or has been successful. I’ve read the fact sheet and I’ve also read the studies. I worry that I haven’t had all three ablated during that procedure.
Many of you will know, that my story is that I have had AF etc for nearly 20 years. I was just over 40 when they started, they were seldom. Even last year I was only getting one episode a year, but it still affected my life. I was offered an ablation and took the chance, but now I regret that decision.
Feeling very sad. Sorry for long post.
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Teresa156
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Your post really doesn't give us much hope of assuring you that it will be OK does it? If you have read the recovery fact sheet you will know all we will say so I won't say anything other than positive thought is very important. Sorry you feel this way.
I know that you had Atach too…..is it a bad sign that I had it go on last night for four hours though? Is it classed as a palpitation?
Does PVI cover all three arrythmias?
Sorry, you are right. I have read the fact sheet many times and it has been a comfort, though I suppose last night, I just kept thinking ‘it’s back’ and ‘it hasn’t worked’.
Do give it time. What's the worse that could happen? You may need a repeat ablation in coming months. You've had AF for a long time .
When I had my first ablation 15 years ago, I was about 16 years post my first episode . At my pre op meeting with an EP I was informed that due to the time scale the chances of me needing just one ablation were very slim. I had my 5th ablation nearly 4 weeks ago. Like you, my episodes were, in the main, spaced well apart.
As always, you’ve been very helpful and it is as I suspected, it hasn’t ablated the Atach or the flutter, not from the PVIs.
When I told him I had all three Arrhythmias he was very surprised, hastily trying to look at the notes he had, albeit very briefly. I do wonder if he just said it can sometimes stop those to make me feel better. I thought I could have them all ablated during one procedure, my previous EP said they could be and I’m sure I’ve seen posts where people do have all three ablated together, if they co-exist, but perhaps I’m wrong.
Hi Teresa, you don’t say what type of ablation, Cryo or RF? I suspect it was Cryo which of course only affects the pulmonary veins and therefore wouldn’t treat flutter or A tach. It is natural to suffer from ‘buyers remorse’ after a big procedure when results don’t seem to be perfect but unlike my hysterectomy for example it will have done no harm and in time may turn out to lessen your symptoms ‘bigly’ ☺️
Thanks, Yes , it was a cryoblation for PVI. Under sedation. I felt a lot of the freezes, before I think they upped the sedative. Uncomplicated apparently so that’s a positive. Though AF did break through last night. I hope that was a one off.
I think the problem I have, is that I had to keep reminding people, Arrythmia nurses and the EP on the day, that I had all three arrhythmias ( as this apparently wasn’t clear to any of them) the EP on the day, told me the PVI ‘should’ ablate all three. Clearly, it doesn’t. I don’t know why he told me it would.
Another fear ( I know, too many fears) is that it’s made it worse. Now I’ve had yesterday’s episode, that’s two so far this year, when usually I’d have one. I could usually stop them too, with a valsalva manouvre, which I’m scared to do, now I’m on warfarin.
Just feeling very sad Buffafly. Feel a bit misguided by them, or possibly given the incorrect procedure. I know they could ablate at least two at the same time with an ablation procedure, so I don’t know why they didn’t. It was almost as if as I was down for an Afib PVI, that was what I was having, no question. I’d even asked them at the pre op if all three would be ablated and after they checked with the EP, as they were unaware, they were told yes.
P.S I’m sorry your hysterectomy caused problems 😳 x
Another fear ( I know, too many fears) is that it’s made it worse.
Again too early to draw any conclusions, but if someone has both atrial fibrillation and atrial flutter and only one is ablated, it's not uncommon for the other arrhythmia to get worse. On the other hand, there are cases where ablating one can help the other and if this is the case, you may just be experiencing blanking hiccups. Time and patience will tell.
But should your flutter sctuslly get worse, a right sided flutter ablation is a smaller procedure with easier recovery than a PVI, with a success rate over 90%.
The AF was quite ‘fleeting’ last night in comparison to what I usually have had in the past. My HR is up at the moment which I know is normal after an ablation, but even with this slightly higher HR, my Afib was running at 150s when in the past, I’ve seen it in 180s, so that was different abd I would have expected it to be higher due to my higher HR. So fingers crossed.
At least it went back to NSR without any extra meds, which is a positive.
Ooops, bad to read replies before post, I see you said Cryo 😂 I’m thinking poor communication because it should have been pointed out to you before signing up that it was Cryo and the limitations of the procedure. I know some hospitals have a ‘Cryo first, RF touch up later’ policy though I had an extensive RF ablation for AF, Flutter and anything else odd that might be taking off - but I was a special case. Any way, very upsetting for you.
Yes, I did ask a lot about whether it would be RF or Cryo and was categorically told the first is always cryoblation. I assumed then, that they had all my arrythmias covered for the cryoblation, but now know that they were all unaware that I had them, apart from my original EP who mentioned it in a letter to me that they have on file.
Just because your EP does a Cryo afib ablation, does not mean that they cannot use RF during the same procedure for atrial flutter.
In fact, at least in the United States, this is standard procedure.
I also was in contact with a UK ep and one in France. Both used either Cryo or PFA for afib, but would also use RF during the same procedure if indicated for a flutter.
I don’t think it was an option that they have at this hospital, especially as I was sedated only, though I know they had anaesthetists on hand too if I needed a general as I was visited by one beforehand.
It’s standard always apparently for cryo only first. It’s got a good reputation as it’s the Essex Cardiothoracic centre.
I’m definitely going to ask about it tomorrow and why Afib only appears to be on my records. I did my best by keep reminding them all and mentioning it, but I don’t think I should have had to.
Actually, ablating the flutter line usually involves less sedation than a PVI. I think either the ep wasn't versed in RF -- unlikely -- or there was a miscommunication beforehand as to your diagnosis and treatment approach. From what you posted, does not seem that a flutter ablation was done, but always a good idea to ask. But again, cannot turn back the clock and maybe the PVI will end up being all you need and going back for a flutter ablation in the future, if needed, is a very workable plan.
Hi Teresa, I had my PVI ablation on the 26th of March this year. Whilst my EP was ablating my AF he noticed I had flutter too, so he did both at the same time. I see him tonight for a follow up. Will let you know what he says as my heart rate is generally faster than pre Ablation
Hi Teresa, apparently 'yes' I went into AF and flutter during the ablation but my EP was aware I 'may have' flutter from a previous ECG. I thought they put you into AF when doing an Ablation.I have just had my follow up tonight and I have mixed feelings. My EP said he was pleased and listened to my heart and took my pulse. My pulse seemed to be going a bit fast but I had just rushed my tea and had also driven back from Lincolnshire. I was also a bit anxious. He told me not to worry about my heart rate as they had to ablate a fair bit of tissue and it often settles down after a while.
He won't let me stop my Sotalol at the moment as he says he likes 'belt and braces'. Not sure if I will be allowed to come off it in the future.
He also told me that he will follow me for 12 months and he wants a holter monitor for 24 hours to see how my heart is behaving. His words were "You tell me you feel ok but I want the facts". He said no hurry it is part of their normal protocol to do this at 6 months. I have to see him again in November which is another 4 months and then again 4 months after that to make the 12 months.
Thanks for coming back. It certainly sounds like they are keeping an eye on you. Having a heart rate that’s a bit higher after an ablation, I have heard is normal. The fact sheet also mentions it too…mine is about 15 beats a min higher all day ever since…it used to regularly go to about 58 and dip to 55 now and then…now it’s mainly 70-80 at rest, occasionally dropping to 68/69 but rarely.
I too thought they put you in AF during the ablation, but he told me it wasn’t a problem as he could still see all the areas, apparently. I was disappointed that I didn’t, but he said it wasn’t an issue at all, but I can’t help thinking that if I had have done, he would have seen it change into the organised tachycardia/flutter, or whatever it is.
It sounds like you are doing very well and at least you are being looked after very well too.
I hope this all works out well for you and your heart continues to recover nicely 😊
I have read your journey on here & I applaud you on your determination to succeed with this beast and I hope you will. After my procedure, my EP was so convinced this would fix everything telling me how pleased he was and how pleased he thought I’d be with it. I suppose it gave me a bit of hope at the time.
I’m an anxious person, which doesn’t help I know.
But yes, what’s the worst that can happen? You are right.
In cases like yours, they generally do not ablate for atach, however a right-sided aflutter ablation is usually done at the same time as the left sided PVI.
If you don't have detailed notes from the procedure, I would definitely get in touch with the EP's office and find out exactly what they did. Was it a PVI alone or did they ablate the flutter line (right side) as well.
That said it's still early on in the healing process, so too early to draw any conclusions.
You say, you can tell the difference between Atach, flutter and afib and maybe you can, but in general, it can be quite difficult even with an EKG.
I've also had sustained heart rates around 130/132 and it was diagnosed as atrial flutter with 2:1 conduction. So if you don't have a Kardia type device, you might want to get one and document the episodes as well as share them with an EP moving forward. This is especially important because you mentioned taking Flecainide in the past. While daily flecainide can help prevent atrial flutter., it should never be taken during a flutter episode because it could make things worse according to my ep.
FWIW I had some atach episodes after my afib cryoablation for months and I can report that over a year later the ablation was a success. The one episode I did have I terminated within a couple hours with PIP Flecainide.
Even during blanking. Ideally, you do not want to stay in atrial fibrillation any longer than necessary.
You have made me think about whether the sustained 130s HR was indeed flutter rather than ATach. I have seen this same result on my applewatch ECGs since when I first got my watch in 2020, before I took fleconaide, which was a over a year later, however I’m not sure it is flutter.
I took 300 mg then as a pip ( recommended by cardiologist). I only took it once. I took it after a beta blocker as well. It made me feel very ‘wired’ & I had some minor chest pains the following day, which eased, but it put me off it.
An EP then diagnosed Aflutter from various apple and Kardia ECGs I left with her early last year in 2023. I can’t actually identify Aflutter on any of my ECGs that are similar to what I’ve seen on line, as I can’t see any actual ‘saw tooth’ pattern, but I’ll take her word for it, of course.
I know you’re not a cardiologist, but I’ve just attached a screen shot of what the sustained episode looked like on my watch last night. I have very similar from all my episodes as I often just get ‘high heart rate’ mixed in with AF. most times after. I think there’s a p wave too in the screenshot? Does it look like Aflutter? Unfortunately I didn’t do an ECG of any of the sustained 130s on my Kardia last night, only the AF, I did all the sustained on my watch, as it was easier as I lay in bed. I tend to do Kardia downstairs…
The notes I have from the PVI aren’t very detailed. He just says uncomplicated PVI, all four pulmonary veins ablated and mentions the catheter lines he used.
I’m going to ring the arrhythmia nurses tomorrow and try and get more details. I’ll tread carefully, but I do want more answers. I will ask if the flutter was ablated, though I suspect it wasn’t ( hopefully I’m wrong) 🤞
it’s comforting to read your last paragraph about your episodes and I’m so glad it worked. I’ve read your posts and updates a lot and know that you too have been through a lot.
So it does sound that they only did an afib PVI (left side) and did not ablate the flutter line (right side). We can't turn back the clock, so let's hope that the PVI will help the flutter. If not, a typical right sided flutter ablation would be an option to explore in the future. As I mentioned before, it's a smaller procedure than an afib ablation with a very high success rate of over 90%.
As to the ekg you posted. While I'm pretty good at identifying afib, as opposed to flutter and ectopics -- differentiating between flutter, SVT and Atach is not so easy. In fact, many top ep's struggle to tell one from the other, especially on a single lead ekg such as the Apple Watch. Better would be a six lead from the Kardia6L and still better would be the 12 lead at your doctors, however not always easy to capture them if they are intermittent. A 7-14 day ekg patch is another diagnostic tool which can show the transition both into and out of the arrythmia, which also can give clues as to what it is.
Back to the Flecainide. As I mentioned previously, I was told to NEVER take flecainide during an aflutter episode because it could potentially turn into a more dangerous arrhythmia. For this reason, important to be able to distinguish between afib and aflutter before taking Flecainide as PIP. Kardia has always been my guide here. Of course, confirm with your doctors and get them on board.
Meanwhile, give it some time and hopefully things will start to sort out.
I remember asking a cardiologist, when he first prescribed me the flec, if he could double check the ECG I had taken at A&E a few weeks before, as I thought I had ‘something else going on’ apart from AF.
I had 9 hours of a 12 lead ECG taken that dreadful night as they were just monitoring me for hours as my BP was too low. He had never seen my ECG before I asked and he casually glanced at it on his screen. He must have taken three seconds, if that. “AF” he said. I asked him to double check, smiling at the same time, that although I knew he was a cardiologist, I did think I had something else as I had periods of just high heart rate recorded. He wouldn’t look again. “It’s AF” he said. I didn’t believe him. He still prescribed me the fleconaide.
There have been many times that I’ve stopped my Afib episodes with a vagal manouvre. The last one I stopped within 6 minutes in January. This is an additional reason why I think it’s not always Afib. My EP knows I do this this too.
If they ever suggest to me to take Flecainide, as I can see that could be a possibility in the future, I will remember what you have said, as I will refuse.
Thankyou for all your time and effort today. I appreciate it.
There have been many times that I’ve stopped my Afib episodes with a vagal manouvre. The last one I stopped within 6 minutes in January. This is an additional reason why I think it’s not always Afib. My EP knows I do this this too.If they ever suggest to me to take Flecainide, as I can see that could be a possibility in the future, I will remember what you have said, as I will refuse.Thankyou for all your time and effort today. I appreciate it.
Thanks for the kind words, always glad to help as best I can.
Yes, Vagal maneuvers tend not to work for afib and better for other arrhythmia's, but not that alone is not conclusively diagnostic.
As to the Flecainde, first and foremost, do not substitute any of my advice -- or anyone else's here -- for your doctors. They are medically trained and know your complete history.
That said, I'll try and clarify what I've been told by several ep's regarding Flecainide and arrhythmia's.
1. Flecainide can be very effective at preventing afib, aflutter and some other arrythmia's. In this regard, it's taken on a daily basis to help prevent them from occurring. I have therefore taken daily Flecainide even though I have a history of both afib and aflutter.
2. PIP Flecainide is different. That's because you're already in an arrhythmia. Here, I've been told to take PIP Flecainide only if in afib and to never take it if in aflutter. That's where knowing how to differentiate the two becomes important. I found the Kardia very helpful here, but I also know the difference from having shown similar ekg's to my ep's in the past.
I understand and can see how it makes a difference. I think a fleconaide Pip is going to be tricky for me, if I’m flipping in and out of Afib to flutter, like I was last night initially. A couple of additional times I flipped into AF I think, for a few seconds only. I will try and get a Kardia of this 130s sustained rhythm next time and ask them if they can identify it for me.
Good afternoon, you are very early in recovery, be easy on yourself and stay hydrated, after my first af ablation, it took one year for my heart to really settle, then had three years medicine free. Please stay calm and all the best.
I had my procedure at the same hospital 8 years ago and the medic came sat on my best and told me what a success it had been...........it wasn't and I was offered another, which I refused and now wear a pacemaker.
Thankyou. I’m sorry things didn’t work out for you
Hopefully my experience will end up being a positive one and this is just a hurdle I need to get over. The hospital’s Cardiothoracic centre has an excellent reputation.
Yes it does and its the top in its field in this area, trouble is its a nightmare getting there lol. Good luck for your future care, hope it all works well for you x
Hi Teresa, I am on a walk at the moment but would love to answer you questions later in the day. In fact I am originally from near you at Westcliff and worked in and now retired in Singapore. Here for 25 years. I have all manner of arrythmia and palps for over 40 years and 2 ablations with (originally ) same type of results you explain. You say 5 weeks ago..... My goodness, my last ablation took nearly 3 months to get rid of resulting flutter so maybe you are unnessesarily anxious prematurely. Can talk later but on a long walk now. Maybe interact later.
I read your post with interest..we are local to Basildon too..could I ask who did your proceedure just for reference in case we need intervention. Hope you're soon feeling better and reassured as it sounds like you've been through it x
I would like to say that the person who did my procedure, I have every confidence that they were one of the top, most highly regarded consultants in their expertise and I felt in extremely good hands and I would do again.
I think my problem is purely a communication issue in that my arrhythmias don’t appear to be on their formal records.
At my first appointment with the EP, he said I had both Afib and Aflutter, which I had never heard of.
Ablation #1 was PVI only. I do not know why the Aflutter was not addressed. The Afib went away (the irregular irregularities) after the PVI.
Six months later, Aflutter kicked in. Drugs-CV-drugs-CV., on and on. The drugs made no difference. Six CV’s in five months until they FINALLY scheduled me for ablation #2. Miserable time
Now they tell me I don’t showAflutter, but am experiencing another episode of Atrial Tachycardia, which showed up three months after ablation #2. Out of nowhere it seemed to me. I didn’t know AT was a separate thing from AF snd AFl. Now, two months later, I’m on another AT episode. Mine don’t come and go during the day. Once they start, they don’t stop.
Does this merry-go-round never stop?
I, too, am feeling disheartened.
My reading of the literature tells me the treatment of choice for AT is ablation.
Right now my HR is a steady 120, give or take 5, day and night. I notified my EP “team” and talked with the EP nurse today, who seemed just this side of clueless. I’m not a real person to her.
I suggested congenially that I believe I should be scheduled for an ECG (to confirm my Watch readings) and a CV as soon as possible, and also scheduled for electrophysiologic mapping to find out if my variety of AT is ablatable, and if so, get me scheduled for an ablation asap. I’ve made known, always congenially, that I’m not interested in drugs. I’m interested in getting to the physical source and correcting it—at least trying to. Drugs treat symptoms without curing and make me feel crummy.
I’ve not heard back. But it’s only been a day.
I’m going to continue to proactively seek a viable solution to this unexpected occurrence of AT.
First of all, I’m so sorry to read the journey this has taken you to. I can see this was definitely not in your plan as well was it?
I wonder if you should put a post up about this as I’m sure you would get suggestions - it sounds like they need to ablate the AT now? I’m no expert….but I think they can do that. Keep pushing. You should not be stuck at 120.
The other night when it was constantly ‘stuck’ on 130 for nearly 4 hours, I did start to ‘panic’ inwardly that it wasn’t ever going to stop and what was I going to do, on a Sunday morning. It was worse than the AF.
I feel your pain. So sorry to read of all your DCs and drugs. It must seem never ending.
I was going to update my post somehow today, as I have had an update from the arrythmia nurses, but I feel that if I do that, I’ll just start spiralling more into despair and I don’t want to put people off in the future, who opt for an ablation as I know this is a negative post. But I’ll write here what they told me yesterday.
My Afib apparent,y initiates what they call a ‘flutter and organised tachycardia’ this is what the EP saw on my past ECGs. If I didn’t go into AF, I didn’t get the flutter/tachcardia. When I used to get theses episodes, I’d be flipping in and out of each for a few minutes at a time. I tried to explain to her that I was never in Atach for four hours solid. I don’t think she really listened. She just told me it was normal and that my heart was still healing. Telling me it was good I reverted.
In all honesty, I’m trying to be positive, in that the AF only appeared for about 20 mins, at the start flipping into it a couple of times, I noticed, but only for a few seconds in that four hours, .but it’s hard to be positive, when I have this nagging fear of being stuck again for hours on 130 again.
She told me I would probably need to stay on the Bisoprolol which wasn’t in my plan, but she couldn’t make me. Staying on that was never my intention. I am 58 and my chads Vasc score indicates I don’t need ACs until 65. She said I could come off after 3 months, but I am a bit scared if this should happen again.
She suggested I go on fleconaide, I refused. That wasn’t in my plan. She suggested I increased my Bisoprolol, I refused, definitely not in my plan ( I can’t tolerate 2.5) . I did however say I’d take another 1.25 if I had an episode., when she suggested it.
She touched on my anxiety 😟 of course I’m anxious.
I’m having a review at 3 months….but for now, it’s carry on.
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