No ablation recommended: Hi after having a... - AF Association

AF Association

23,541 members28,497 posts

No ablation recommended

Edders profile image

Hi after having a telephone appointment with my cardiologist , we have decided to stay on medication only for the meantime. yes I know I am lucky! The reason I am posting something was his remarks to me that ablation would not extend my life and there was only a 1 to 3 per cent of its success. Surely what’s the point of churning out the procedure if that is the result. What are your views and has anyone been told similar?

47 Replies

I was told quite the opposite - ablation success was quoted at 98% - didn’t quite work out that way but I was still very pleased I did it. I took the view that I would do almost anything to get off the meds, which I really didn’t tolerate and which made me very ill. If you tolerate them well, that may work for you.

Ablation is more suitable for some than others so if that is a generalised opinion then I would seek another opinion from an experienced EP.

If this is the prognosis by an experienced EP based on your individual circumstances then, take the advice.

Before you make a final decision you may find one of the talks at the Virtual Patient Day of great interest to you as to who would gain most from ablation - Assessing Appropriate Treatment options - heartrhythmcongress.org/pro...

Turquoise19 profile image
Turquoise19 in reply to CDreamer

Hi CD dreamer, can I ask how many ablation you've had ? 98% is impressive. I have been told 80% after a 2nd ablation. I have so far had one, that lasted a bit over 2 years. Now wIting for a cardioversion on 15th Oct, then to be put back on the ablation wait list

It all depends on your condition. If ablation is done early on then it is usually a lot more effective. Even so ablation is not a cure but a quality of life enhancer as if you have bad symptoms from your AF it will alleviate them if successful for some time. If like some you cannot use rate control medication then it is worth it. I was on the waiting list for ablation after having had 3 successful cardioversions. I should have had the ablation a year ago last April but Covid put paid to that and again in October last year. So, before my EP would do the ablationhe wanted another scan when he found that my heart had remodelled itself and got too big from the AF and so it was unlikely that another cardioversion or the ablation would work. Al;though my last Ablation the February before the lockdown lasted over 15 months. Therefore it was agreed that I would just stay on apixaban as I am someone who cannot take rate control medication, beta blocker, or calcium channel blockers as they make me more ill than the AF.

The percentages usually quoted are around 70% successful for first ablation and if a second is needed - where they will actually target the parts not ablated the first time will likely be far more successful.

Have you had a successful Cardioversion? If so this will show you whether or not an ablation will work for you and whether ablation is the way forward. Have you consulted with an EP as my cardiologist never mentioned ablation until I asked about seeing one and it was he who suggested ablation because my cardioversions had been successful.

For my part because I am now in permanent AF with low HR I am quite happy getting on with life but still keeping a close watch on heart rate when exercising.

Edders profile image
Edders in reply to Desanthony

Thank you for your reply....my last visit to the cardiology dept...they told me I had been on their waiting list since October 2018 and they wanted to do a ablation or a pacemaker...both of which was a surprise to me as it had never been mentioned at any of the tests I had gone through...after a 24 hr monitor the cardiologist came to his decision...

Desanthony profile image
Desanthony in reply to Edders

You should ask to have copies of correspondence sent to you when you have consultations so that anything that is not said in the consultation but gets sent to your GP or elsewhere you also get to know about - I have been doing that since 2012 when my wife found out that a letter from a consultant had gone to her GP advising a change of medication - again which had not been mentioned to her in her last consultation, had not been acted upon when she went back to say her condition had got worse thankfully she got the change in medication and also had a look through her notes and questioned other things that were on there too.

Edders profile image
Edders in reply to Desanthony

That’s interesting...I feel there are probably things I should know...no one despite various visits and tests at various hospitals told me I was on a waiting list for a pacemaker or ablation....

Desanthony profile image
Desanthony in reply to Edders

Maybe a visit to your GP to go over all the correspondence that has been sent to him from your Cardiologist is what is needed

Edders profile image
Edders in reply to Desanthony

I saw my doctor concerning another matter and she has not received anything from the hospital...it was only 3 weeks ago the phone consultation

Desanthony profile image
Desanthony in reply to Edders

No but she should know that you are on a waiting list for an ablation or pacemaker- whatever they were thinking of doing?

Does he mean just 1 - 3% for you? If he means it for everyone then he really doesn't know what he is talking about. Is he trying to put you off because there are very few ablations carried out where you live?

They say that ablation is not a cure and will not extend your life but after a year with no AFib I really do think that I will live a bit longer than if I hadn't had it done.

BobD profile image
BobDVolunteer

Aha, the old plumber versus electrician thing rears its ugly head.

OK I agree that ablation will not generally extend your life as any and all treatment is for quality of life (QOL) but nothing is ever that simple. I am strongly of the opinion that ablation did extend my life as without it my surgeon would not have been prepared to carry out the life saving cancer operation I had saying it would have been too risky had I still had AF.

As far as results are concerned your cardiologist is way off beam with 3%!

The usual figure given by top electrophysiologists is 70% after one procedure rising to 80-85% after two. There are plenty of people who have relief from AF after their first ablation and never revisit this forum . Many more people find that with ablation and life style changes their AF events are greatly reduced but of course there will always be those for whom it doesn't work.

If you are in permanent AF and all attempts to return normal sinus rhythm (NSR) by chemical or electrical cardioversion have failed then yes the chances of ablation helping are very low but people in that category are fortunately few.

Slidingdoors99 profile image
Slidingdoors99 in reply to BobD

Thank you Bob.

pusillanimous profile image
pusillanimous in reply to BobD

I wish my late sister had had the treatment you did - she would probably be alive today it she had. She was admitted to hospital for a gall stones operation. Like myself and all my sisters she suffered from PAF, but the hospital decided to discharge her (this was in Surrey) because they said they could not get her heart rate down in order to operate and sent her home with a packet of Aspirins. Shortly after, she had a mild stroke, sent home again, but still no gall bladder operation. After several months of suffering she developed jaundice, admitted again where it was decided a biliary tube was blocked, so they inserted a stent and discharged her. She was comfortable for a while, put the pain and nausea etc, returned. Admitted again, further examination showed she had cancer of the biliary tubes- inoperable at that stage. A specialist involved in the charity in this condition that I donated to after her death, said that her type of cancer is mostly caused by one of the stones escaping from the gall bladder. If her AF had been controlled when she was first admitted and she had had her operation, this would never have happened. She was a very fit 78 when she died.

BobD profile image
BobDVolunteer in reply to pusillanimous

So sorry to read that but does prove the point I was making. As my old aunt used to say "you don't know what's hanging till it drops. "

Hi edders.

I’ll be brutally honest and this is obviously only my opinion but I think it comes down to the fact that cardiologists are completely clueless when it comes to af. Atleast the ones I’ve dealt with personally.

I am 35 and was given a very similar answer to yourself in regards to ablation. I was told by my cardiologist that under virtually no circumstances to have an ablation, I’m too young, the chance of success is minimal and likelihood would be that something would go wrong and I would end up with a pacemaker for the rest of my life. He was convinced that I should just take tablets for the rest of my life and maybe it would go away on its own at a later date. Luckily after a few days mulling his response over I decided to do my own research and found out how successful an ablation can be.

To use bobs analogy above. It’s the whole plumber v electrician scenario. I’m an Electrician and would never dream of trying to plumb in a boiler and one would think that plumbers don’t try to mess with electrics ( but they bloody well do, and 99% of the time royally cock it up) rant over 🤣. Anyway the point is the 2 skill sets do not translate well between each other and the 2 mindsets are completely different in this case.

However you would think that cardiologists would do a bit more research into the actual numbers of successful ablations and would stop giving out ridiculous numbers to patients. I understand that they would only ever come into contact with patients who’ve had problems post ablation and have been referred back to them, so that would slightly warp their perspective. However the numbers do not lie if you actually take the time too look.

Edders profile image
Edders in reply to Elli86

Thank you...I am going to monitor it myself. And as he finished the conversation by ...if it gets worse come back to me....considering I have been on his list since October 2018 and never met him, the chances are pretty slim

Desanthony profile image
Desanthony in reply to Edders

So you have never actually sat in a room with your cardiologist? I know I haven't for nearly 2 years now because of Covid, but that'sstaggering! I get 6 monthly appointments with cardiac nurses 6 monthly blood checks with my GP and annual appointments with my cardiologist and/or EP. Obviously since Covid these have all been done by phone but up until March 2020 I did see them in person.

Edders profile image
Edders in reply to Desanthony

Nothing like that at all..I live in Northern Ireland and the NHS waiting lists are desperate,,,I waited over a year for a consultation with a cardiac doctor who I have never seen again...I have gone for tests to 3 different hospitals, receiving correspondence from them all. Since speaking to the cardiologist who I think had the final say I have a letter for a review at another hospital

Desanthony profile image
Desanthony in reply to Edders

Oh Wow! I thought we were bad here in Wales! Things were a bit of a mess before and now Covid hasn't helped has it? I wish you luck.

Elli86 profile image
Elli86 in reply to Edders

Ask to be referred to an electrophysiologist. If they won’t refer you then see one privately and things will move quickly from then out. Or atleast they did for me. Good luck 👍

Hi! Since amiodarone put me back into NSR six months ago, my hospital have not been in touch about any follow up appointments at all.My GP does blood tests, but that’s because I have high inflammatory markers. 🤨

Are you still taking amiodorone or did you just take it for chemical cardioversion? If you are still on it I would check with your GP about blood tests but if he is taking full blood tests for the high inflammatory markers then I imagine any problems would show up in those blood tests.

Hi and thank you. I had to stop taking it after only 6weeks before of serious side effects (thyroid problems etc) Luckily for me, my heart went back after the last dose!

pusillanimous profile image
pusillanimous in reply to Elli86

My son had an ablation when he was 35, he was and still is to a lesser extent, an extreme athlete, canoeing, white water rafting, mountain biking etc. people who make up half of my Cardio's patients. One of his canoeing friends was a cardiologist and he advised him to have the ablation, I live in KZN, South Africa, and he had to go to Cape town for the procedure as there was not an EP in this province. My son is now 51, and has never had an episode since his ablation although he is still sporty, his preference these days is long trail hikes with his young sons and non competitive canoeing.

Elli86 profile image
Elli86 in reply to pusillanimous

Sounds like you’ve got better cardiologists in your area 🤣 good news on your son though 👍 sounds like he had very successful outcome and if mine is anywhere near that I’ll be extremely happy. Good luck to him and hopefully it continues 😀👍 does he have to take any meds now out of interest?

pusillanimous profile image
pusillanimous in reply to Elli86

No, nothing at all, he's not a smoker or drinker, likes the occasional beer, but takes no medication at all - used to have the occasional Vit. B shot when he was more competitive, but all the boys did, but that's all, has regular checks with his cardiologist friend that's all. Yes we have some good cardiologists and surgeons here, don't forget Chris Barnard did the first successful heart transplant in Cape Town !!!!!!!!!!!!!I also have PAF, and my Cardio is great he listens to what I have to say, and does thorough checks on my annual visits.

Hi Edder, The only reason to have an ablation is to hopefully improve the quality of your everyday life by getting rid of the fibrillation, and to prevent your having to live with the side effects of medications. It's never considered to be a 'cure' and neither is it 100% effective for everyone. There are those whose lives are greatly improved by having ablation and others whose symptoms return, so it's not really that you have been 'lucky' not to be considered for one at the moment. It's just that you are being asked to live with the condition with or without medication, but without the surgery. There are many factors which are considered when someone has a discussion about the possibility of an ablation, from age and other health concerns onwards, but one to bear in mind is that it is actually is easier and sometimes cheaper to keep the majority of people on medications, and I'd say an ongoing pandemic and its aftermath might be one of the reasons it's being suggested that you stay on medication. And if you are truly happy with that... marvellous! But if ablation is really something you are keen to have, then I would definitely ask lots of questions about why you aren't being considered as a candidate. Because a current shortage of resources is not an acceptable reason for being deterred from, or refused one.

Edders profile image
Edders in reply to Callendersgal

Thank you and I take your point

Do you mean 1 in 3 ie (33%) perhaps? Everyone has a different condition, symptoms & physiological condition. My understanding is that generally ablation has a 2 in 3 chance of success, but how is success defined? Also the average number of ablations to achieve ‘success’ is 1.54, I’ve read. I had mine 8 weeks ago. Big factor for me was that chances of success are greater the sooner it’s done, ‘allegedly’. Good luck.

Yes I had similar. My symptoms are tolerable and I can’t take medication owing to slow heart rate. He told me there were risks with the procedure of 1-3% which I think is where that figure comes from but the success rate was about 50% on a first ablation. So the ep said I was not bad enough to run the risk at the moment. How much of that is to reduce waiting lists down to Covid I don’t know Jane

I'm always a little worried to find these conversation threads going to what seem, to me, to be something of an extreme, pitting cardiologists against EPs. I live in hope that it really isn't like that out there in the world of medicine.

So far as I know, in the NHS, the two specialities either work alongside each other or are the same person. I have not met many cardiologists, it's true, but I can't imagine one being averse to an ablation simply from lack of training. The idea that cardiologists know very little about cardiac arrhythmias is often said, too, but it seems just so very unlikely and, indeed, would surely be deemed unprofessional. I can, I suppose, imagine a cardiologist trained as an EP feeling more-inclined to carry out the procedure as that is human nature.

I would hope that the advice you've been given is based upon your own heart and its workings, as well as how well controlled and symptomatic you are and what shape the atria and heart in general are in. There will be other aspects, too, BMI, BP, diabetes. other morbidities, risks of anaesthesia, and so on.

My elderly friend is now 88 and has had permanent fibrillation for very many years. He's really well for his age. He has had extensive medical treatment for serious prostate issues, gall bladder and hernia problems over the years, despite his fibrillation.

Steve

belindalore profile image
belindalore in reply to Ppiman

There are bad Drs unfortunately. I have had my share of them. There are Drs who don't share information with each other and sometimes with the patient. I've had that happen to me. Just because someone has the initials M.D after their name doesn't always mean he/she knows what they are doing.

Ppiman profile image
Ppiman in reply to belindalore

Sadly, that is so. Once we move over to robotic doctors, all will be well! 😉

That wasn’t quite what I was saying, though, but I do take your point. I have a habit of trusting people and doctors more than most but always arrive prepared to question them.

Steve

belindalore profile image
belindalore in reply to Ppiman

That's another point. Asking these Drs questions. #1) Most insurances here don't allow you enough time with the Drs which #2) Doesn't give the patient time to ask any questions and #3) Some of these Drs don't like you asking questions. They think you should just do as they say. That in my opinion is not being a Dr. It is being a robot. And the ones controlling the robot are the insurance companies and big pharma. I'm in the USA and this is what medicine has been becoming here for awhile now. I used to trust Drs. Never thought they would do harm to a patient. Never had a Dr holler at me for asking simple question about a test like the 1st cardio Dr I had did. He honestly scared me. I could tell you some horror stories about things that happened to people I know. There are too many Drs allowed to practice and shouldn't be.

You seem to have good Drs. Hang on to them. I'm not saying all Drs are bad. But I do believe as I said, too many who are bad are allowed to stay in practice.

Maybe someday when Drs are robots it will be safer. Who knows. Until maybe one of them malfunctions halfway through a surgery on some poor person on the operating table.😳😒

Thanks for your reply. And letting me vent. Wishing you well. Be safe.

Ppiman profile image
Ppiman in reply to belindalore

Pretty darn scary, Belinda!

Steve

Keibval profile image
Keibval in reply to belindalore

At every appointment over the last 4 years I have typed up a list on A4 paper , as the list is always quite long ! ….which I take along so that I don’t miss out any questions that I want to ask my cardiologist I am lucky enough to go to Papworth) .

I highlight the most pressing question…..and I hand the sheet to the consultant when we have discussed them .

I get copies of all the appointments and outcomes as does my GP WITH 3-4 weeks and once or twice I have been able to email problems to the secretary who has been able to pass on concerns and I have again had responses .

I am not a Private patient…….I absolutely trust the consultant 100% and am glad I live in this country where we have free medical care .

I am always seeking more information and wishing I could ‘do’ more and feel better ……having AF clearly affects people differently ….we all have our own side effects , inability to respond to certain drugs and treatments. But as frustrated as I am, ( having always been really active and fit it hits hard !!!) I am so happy to welcome each and every day that comes along .

I am saddened to see and hear so many very strong opinions about these very highly qualified people ……. Clearly some of you out there need to ask better or clearer questions and do like I do ….write them down in order of importance and make sure you do ask them all !

Hi Edders I too am from NI and have been waiting 2 years to see EP on NHS. . I did see him privately around 18 months ago and he told me his success rate was 60 % I have been told by a few nursing friends he is considered the best in NI I am wondering if that is who you were referred to also ? I at the time thought the same as you what’s the point but am really struggling on ? Medication at the minute but can’t get to see a GP so am wondering if we are being fobbed off a bit in N I just a thought !

Edders profile image
Edders in reply to oliviab9

I am with Dr McCann at Royal Belfast but also attend Ulster Hospital and have had procedures at Lagan Valley Hospital..I am on Apixaban and a statin

oliviab9 profile image
oliviab9 in reply to Edders

Yes it is the same Dr I am on flecanide and nebivilol at the minute but am struggling with fatigue don’t know if it’s the meds or something unrelated to AF

Hi Edders I’ve been told an ablation won’t be successful with me as I have a distended left atrium which compromises the success of the procedure. I’m now being fitted with a 7 day tape and had an echo last week with a view to check if I’m a candidate for a pacemaker. That said since recently upping my Bisoprolol to 10mg daily my episodes of speedy heart rate have decreased however I’m not holding my breath on this as appreciate I may slip back anytime. Will see what they say once all my results are in. I certainly don’t want to go down the ablation road if there’s a high percentage it won’t work as seems pointless. If pacemaker’s not an option then apparently digoxin coupled with the Bisoprolol may be prescribed.

After 2 heart attacks starting 25 years ago and surviving an out-of-hospital cardiac arrest 15 years ago, I suffered periods of parox AF which eventually became persistent AF 7 years ago. However, apart from breathlessness when walking up hills (not unusual for a man of my age 81), the AF is asymptomatic and I am unaware of it. The only reason I know I have it is that my ICD records it and the pacing clinic tells me that it is going on 100% of the time. I asked my cardiologist/EP about having an ablation and he said that my present QOL was good with drug treatment, that the probability of a successful ablation was low because my AF had gone on for a long period of time, and that my QOL might deteriorate as a result of side effects of the procedure. Researching the internet and this site has convinced me that he is probably right. I am on Simvastatin, Losartan, Bisoprolol and Apixaban.

Thank you so much for your post Edders. I have been confused and concerned about this for a long time.

Thank you...

I’d get a new Dr and a 2nd opinion.

Is your AF permanent, or does it come and go with episodes of normal rhythm in between (paroxysmal AF or PAF)?

How long have you had the AF?

The 80% or so success rate that is often quoted here for a first ablation applies to ablation for PAF.

If the ablation is being performed for permanent AF the success rates are lower.

As someone suggested above, it's a good idea to ask the cardiologist why the success rate would be expected to be low in your case.

I had an ablation and apparently it wasn't successful. I will see my cardiologist next week to discuss meds. I do not want to go through another one. It beats up the heart pretty badly. I did not take enough time for suitable rest after my procedure and that was on me. But, for the money I'd probably stick to the meds for now.

I had my ablation 8 weeks ago and when first diagnosed in Dec 2020 the cardiologist did offer it as an option. At the time I said no I'll try the meds. However resting hr is low and I didn't do well on the meds so opted for the ablation. Maybe I was just lucky in that my cardio works at both my local hospital and the heart specialist hospital in my area so he recommended it first off. It's not a cure but I'm hoping it will improve my quality of life. So from my point of view the cardios and eps are not opposing each other rather working in harmony. Only thing is like you Edders, my follow ups are by phone and not in person which is very disappointing, as how can they tell if the op has actually worked.

As others have said, maybe the 1- 3 % is the risk of the operation due to complication etc.

You may also like...