Here we go, I was expecting this when I saw my EP last night. Having breakthrough episodes of afib lasting over 30 hours whilst in Sotalol.
My EP is not concerned about the frequency (paroxysmal afib) but the fact that they are lasting 30 hours plus he isn't happy with
So, I was placed on his NHS waiting list last November for an ablation and he thinks I will be called within the next 6 months.
He thinks this is the best way forward for me with an 80% success rate at first attempt.
He explained the risks and I'm bricking myself, stroke @ 1% and bleeding around the heart 1 - 2% although he says the latter is extremely rare but could lead to death!
Not sure I want this, help and advice please?
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Karendeena
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I have had 7 ablations as I was a very difficult case.
Still here to tell the tale and have not had AF for 18 months now. My last ablation was in 2017 and I gradually had fewer and fewer AF episodes after that.
Statistically there is great success with ablation and this is attested by how many cardiac centres around the country and the world offer this procedure.
It is worth mentioning that this forum is mainly populated by those who have experienced issues. The vast majority of successful patients never seek out this motley bunch of AFers.
Finally keep positive as that’s the best way to achieve a successful outcome.
Thanks Pete, really appreciated 🙂I am not in a good place at the moment in a lot of ways so trying to stay positive about it.Everything around me seems to be going wrong. Trying to look after my 95 year old mum who has turned against me and an elder brother who runs away at the slightest problem (He had a stroke in January from undiagnosed afib). It's just too much for me to take in to be honest.
Just thinking I can't do this so your reply has made me feel a bit more positive. 👍
They have to mention the risk involved. I was told the same things before my ablations and yes it does add extra worry to the situation unfortunately.!!! These people know what they doing and we in great hands. You’ll be ok. try not to dwell on it and remember the risks are very low👍
Thanks Ron. How is your afib now? I was told they would sedate me but not put me under anaesthetic. Fortunately, I am in one of the best heart hospitals in the UK, Glenfield.
The fact that you’re going to a centre of excellence also reduces those risks a lot. I had my ablation under sedation. I was so worried before it, but really it wasn’t bad at all. Sadly I’m one of the people that it didn’t work out for, but if I had been advised another then I would definitely have gone for it.
There are very useful patient information leaflets on preparing for and recovering from an ablation, on the AF association web site. Do take it easy afterwards. The only thing that I wasn’t expecting was fluid retention over the first few days. I shouldn’t have hopped on the scales!
I do still get the odd episode every now and again but it’s always in the early hours and self terminates. I’m happy with my situation to be honest. I’m still working full time, I go on holidays at every given chance mainly Spain or Portugal short flights 😜. I was offered a fourth ablation around 4years ago but things settled down so I thought I’d leave things while it’s good.👍
Remember Your in great hands with our experts, I’m so thankful for all the help and expertise Iv received. You’ll be fine K. 👍x
Hi cookie, I’m on 10mg bisoprolol daily, also recently Iv started statins as my last blood work said my bad cholesterol was a little higher than they liked. And a propafonone PIP but I haven’t used the PIP in last 4 years because I usually sit it out until I go back into NSR which is usually no longer that 3 hours, always early hours too.
In my early AF days I was told if you talk to a carpet salesman (aka an EP) he will sell you a carpet.
If funds allow, I would pay privately around £250 for a cardiologist appointment for a second opinion and a review of different drug options.
Stress is I think widely accepted as one of the biggest contributors to AF triggering, whether before or after an ablation, so I suspect you will need to take some brave decisions to reduce this as you will be no help to family if you are incapacitated. I would also look at improving many other lifestyle choices discussed here frequently.
Whether to have an ablation or not is very subjective and based on so many individual circumstances and feelings it has to rest with you. I turned down an ablation 10 years ago but I know what will change my mind - that will be when my Quality of Life is such that the decision is made for me.
Hope something there helps and best wishes either way.
I thought that was what I said Pete.I know that very well and from personal experience.Rejected referral wrongly made to cardiology added more than 4 months to my fight to be seen. It was "secondtry" that advised a cardiologist.Kathy
Thanks but I pay privately now and he is top Professor in his field. I don't believe that cardiologists have the same level of experience or specialism. The only thing I am concerned about is that if you leave it until it becomes persistent it is more difficult to treat. The fact that my episodes last over 30 hours with a fast heart rate means I could be more susceptible to a stroke even whilst on anticoagulants. I don't know which way to go but very grateful for your feedback. How are you managing your afib? I am 66 and don't want to leave it until I am much older when complications are more likely
That's great that you have found a medic that you have faith in. I certainly am not recommending you go anywhere else. I guess I was just lucky with my cardiologist and unlucky with my EP.
I am 70 and my AF was diagnosed at 60 with 2 episodes a week; since then I have taken 200mgs Flecainide and adopted a multitude of improved lifestyle changes and still working on the latter. During that period to date I have only had two episodes under one hour but it has been hard work getting there and as you try new things the risk of AF being triggered remains as does anxiety levels, which remain my biggest challenge partially met with more spiritual focus - with me that means prayer and engaging with Nature as often as possible. Best wishes.
Hi again, wow, you really have it under control. I wish my episodes were that short!What lifestyle changes did you make?
I have cut out all coffee and alcohol (since I was diagnosed 3 years ago,) I am not overweight so I think the stress is the main trigger for me.
I can't take Flecainide, I was prescribed that by the cardiologist who diagnosed me and it gave me pro-arrythmias 😢
If I could do what you have done I wouldn't be contemplating an ablation. It's just the length of the episodes with the fast heart rate are so debilitating. Normally every 4 months but they have occurred after 2 months now 😢
I don't want to spend the rest of my life worrying when the next one will get me, oh and I would love a glass of wine!
I would say the 3 biggest factors which often combine to trigger an AF episode are in their widest context stress, digestive issues and breathing properly.
I miss somethings including a glass of wine but keep reminding myself AF free is better.
Hi I spent a long time deciding re ablation.It wasn't the risks that bothered me but the procedure as it would be under sedation not GA.And I was told only 50% chance of success But my QOL deteriorated and I would try anything to improve.
Just starting feeling the benefits 6 months in NSR.
all the research points to more use of ablation if your heart is suitable. The meds have risks too. And there is only so much lifestyle changes can do for a progressive condition like AF It really isn’t as scary as it sounds - and have you read the list of risks from any op? A cataract op for example. I hate to think of the effects on heart muscle of a prolonged episode of AF too. But ger some help with those pesky relatives of yours and be prepared to rest afterwards. Good luck!
Hi I have had Paroxysmal AF for about 10 years and was offered ablation at the start. I didn't fancy it at all and at the time the episodes were about every 9 months to a year. Over the years, the episodes became more frequent but I was still reluctant until I had a change in cardiologist who explained everything to me. I felt so much better about the prospect but still felt it wasn't yet necessary and he agreed. About 2 years ago, my episodes ramped up to once a week or so so I asked to go on the waiting list and was told I could remove myself at any time if I wanted. I had a long telephone chat with a registrar who then organised for the arrhythmia nurse to ring me, she then sent me a booklet with the all the information I needed. She told me to read it, make a note of any questions and then she made an appointment to ring me back in a couple of months. I read the booklet which made good sense but frightened the life out of me when I came to the possible complications etc. I wrote a long list of questions and on the second call from the nurse, she answered everything. I felt reassured but come the date of the ablation (in August this year) I was anxious again. On the day, my cardiologist and anaesthetist were so calm and reassuring and no mention was made of the risks. The procedure took about 2 hrs under GA and my cardiologist was very pleased with the result and said it had been successful. The next day I felt fine and did too much and that night had an episode. I rang the nurse and was told to restart my Diltiazem (told to stop it after the ablation until the follow-up OPA) but not to take my PIP Flecainide unless absolutely necessary. Told not to worry as it takes at least 3 months for the scar tissue to form which would stop the AF and thinking about it, the episode was due and I had so many triggers - over tired, dehydrated, stress and doing too much. I then took it more easy but feel back to normal (although get tired more easily) 4 weeks later. I am very hopeful and am glad I had the ablation because AF is a progressive condition which will only get worse if left too long and the success rate is greater before you get into persistent AF. Obviously, it's your choice but I'm glad I went for it.
Hi, I was offered cardioversions before ablations, seemed less scary and all worked (3) for over 12mths.Now had 3 ablations and still a grumpy old sod.
When you say "not sure I want this".... what is it that "you don't want"? The afib? Well that is out of your hands. The procedure? Well none of us WANT to get medical procedures, but what I think we ALL want is to have a heart that beats steadily, and your best bet for this is with an ablation. You are getting the benefit of decades of experience doing this procedure, and it is SO much more effective now than it was. And if you were to decide to wait, well then it just gets worse and your chances of staying in NSR decrease, even with an ablation. Sorry if I sound harsh, but these are the facts. And it is VERY safe now BTW.
Thanks for your reply it is factual and I get it, I'm just a very anxious person 😔My EP said "It's not going to go away" and I get that too. I suppose I just think that when I am in NSR I am ok and then of course the beast gets me again, often for no apparent reason! Like you say treatments have improved and I know I have the best chance while it's in its infancy.
What makes it worse for me is that my dad had afib, took warfarin, fell, banged his head and died age 60 at the very hospital where I am having the ablation
I understand your feelings. When NSR I think it's gone but comes back. Your ep told you it's not going to just going away. I am looking at ablation #4 but I am complicated with atypical flutter, afib AT
Tough decision for sure. I’m still quite new to the world of AFib ( diagnosed this March) but like you I get very high HR and prolonged episodes and have to be cardioverted ) I also have moderate CHD) .
I’ve just started Flecainide and will see how that goes. My cardiologist and I are going to decide in October whether I need to go down the EP route and possible ablation.
From what I have read so far the success rate is much higher the soon you go the ablation route - the longer you leave it and the more AFib episodes the lower the success route. It’s a progressive disease so to ‘hope’ it will get better on its own is probably a bit futile.
I’m trying all the usual life style changes currently to see if I can reduce/ stop it myself . For me the risk of stroke feels too high with the type of AFib I get ( HR over 165 for hours and hours ) and combined with CHD and a family history ( father and brother both dying of HA early 50’s - I’m now 62) my choice will be ablation if I can’t get it under control. For me the ‘fear’ factor of my family history would make this an easier choice
Hi there, I agree, my father had afib and heart disease. My mum has a slow afib that she doesn't feel at all! My brother had a stroke in January which took his left field vision ( from undiagnosed afib, he was told he had SVT years ago). He has just found out today that he has actually had 4 strokes (TIAs x 3 and then the one that took his sight).My EP doesn't like the length of time my episodes last hence the recommendation of the ablation, even though he says they are quite infrequent at the moment.
The stroke risk scares me but he says that it's unlikely I will have a stroke being on apixaban. Are you on an anticoagulant?
yes I am on an anticoagulant - I’m on Edoxaban. My cardiologist was like with your family history you don’t really have a choice!
Wow 4 strokes your poor brother - amazing that he never was aware of them.
My mum had a stroke as well , a massive life changing one that left her paralysed down her left side and brought on dementia rapidly - she was 70 and died at 72 bless her. She had originally been diagnosed years before with AFib but then they decided she was no longer in AFib and took her off the anticoagulants. Family history is like a massive threat hanging over our heads. It’s hard to get away from it and even though I’ve kept myself fit and healthy all my life , been at optimum weight and meditate etc it was so upsetting to discover in January that my ‘bad genes’ have given me CHD despite my lifestyle effort.
I think quality of life is what I’m after and not waiting for the next big AFib attack to strike and wreak havoc with my life / holiday/ plans. I’m also not prepared to stop doing things that potentially are perceived as no longer ‘safe’ for me ( I sail and my family is unhappy about me continuing to sail for long periods off shore) . So if the new med doesn’t stop my AFIb with high RVR I will def personally go for an ablation so that ideally I can continue to do what I love doing.
I guess one way of looking at it is if you had a bleed from the heart I’m guessing we wouldn’t really know about it …
Wow, you are an inspiration! I hope Flecainide works for you, it gave me pro-arrythmias so it was a no go for me from the start 😔I have been a horse rider most of my life (just for fun, no competiveness) but was told I shouldn't even go there now I am on an anticoagulant 😢, perhaps I should weigh up the risks against the benefits. Like you I enjoy my holidays etc and don't want to be waiting for the dreaded episode at 30,000 feet in the air.
Thankyou. I had sailed our boat to Majorca with my husband from alicante in July when I had my last AFib attack and ended up in intensive care July 4 th - was horrid experience had to be cardioverted since HR was up at 165 and would t budge . I kept almost backing out . Int he end had to pay for a skipper to sail out boat back to alicante .
I’ve actually only had 3 full on attacks each time with HR over 165 first two in December then last one in July. Strangely though I went on Flecainide 2 weeks ago and am now finding I’m going in and out of AFib almost every day ( according to my Kardia) but at a low HR of around 60-65 and I feel fine. Not sure what to make of it ? But interested in your comment re what Flecainide did to you. How did you know? And what is a pro-arrhythmia?
I messaged my cardiologist the first day it happenned and he said as long as my HR didn’t go above 100 at rest with AFib not to worry, as long as I felt okay. I’m currently away in Spain again sailing ( which he is aware of) and have got a holter monitor booked for 7 days the day after I get back. Not sure now whether to re contact him or not?
I also have CHD which I believe is why the RVR is a no go for me x
Hi again, it appears your attacks are similar to mine! My EP told me to sit it out unless I feel very unwell, faint, lightheaded, breathless or chest pains. I have done this every time since the first two episodes put me in resus. My heart rate used to go about 172bpm for around 2 days which totally wiped me out. Now it starts very rapid but slows below 100bpm after several hours and I find I can carry on pretty much ok apart from my legs feeling heavy. I think being hooked up to machines in resus makes me panic. In fact the cardiologist who diagnosed me said it 'was a bloody nucience' when I asked him what afib was (at that time it was new to me), he also demanded the nurses take off all the monitors saying he wasn't cconcerned about it!!I have episodes around every 3 to 4 months but cannot understand the triggers, it comes from nowhere.
Flecainide, I had more 'erratic' episodes whilst taking this and more frequent. I knew this didn't seem right so I paid to see an Epiphysiologist privately and he told me it wouldn't have been his first choice of medication for me and promptly changed me to Sotalol. Pro-arrythmias are often a different type of heart arrythmia and can be instigated by Flecainide in some people. Whilst I was taking it I had episodes almost every week.
No not seen an EP yet - I have agreed with my cardiologist that after my 7 day monitor we will together decide if that is the right next step for me ( he has someone he can refer) tbc the results . I’m also due to have an angiogram to check just how blocked my LAD actually is ( from a heart scan they thought 50-60% ). So it’s unclear whether my AFib is due to my CHD or not. So hard to know there are so many variables.
Is it ( pro arrhythmia) a different type of arrhythmia that is picked up on a Kardia monitor? Would it be classified as something else? I am getting lots of ‘unclassified’ readings on my Kardia this last couple of weeks since starting Flecainide.
I’ve no idea what triggers mine either - I’ve completely cut out alcohol since my last ‘big’ AFib attack 2+ months ago to see if that makes a difference
Hiya, I haven't got a kardia so I couldn't really comment but some on here may have a better understanding. I only know ( from what I have been told) is that the drug can cause pro arrythmias which is a different type of arrythmia as far as I know although I am not an expert. I believe this happened to me because once I stopped it and switched to Sotalol the erratic episodes stopped and the frequency reduced.I too have up alcohol and coffee 3 years but made diddly squat difference if I'm honest
okay understood - I may do a separate post then asking for comments . Thanks and hope you find a solution or answer for your AFib - or a way of controlling it
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