A recent post from tridye has prompted me to ask this question. The forum gets lot’s of posts from folk seeking information from patients who have had successful ablations and very often it’s pointed out that these lucky people tend to disappear from the forum and go off and enjoy life therefore responses may be few. This tends to give the overall impression that ablations may not be that successful for the longer term. However, it is an important consideration for anyone contemplating having an ablation, so perhaps we should try a different approach to measure success.
To get a better perspective, my question is:
“Is there anyone here who has had an ablation and really wished they hadn’t because it has had an adverse affect on their quality of life.”
On the basis that forums tend to be used more by people who are experiencing difficulties, it will be interesting to receive your feedback and it would be really helpful if you could explain the reasons why you wished you had not had an ablation.
Because Sunday’s are generally quiet, I might repeat the question mid-week so please only reply once.
John - there was a post a few months ago from a forum member who suffered damage from an ablation. I can't remember the details but I know Jean had read the thread and commented about it. I'm sure if the OP or Jean read this thread they will reply.
I guess ablation is like any medical procedure - there will be risks and sometimes things can go wrong. It's important to make an informed decision when deciding if it's right for you.
In my case, ablation was a waste of time and money, While I did not suffer serious adverse effects, the procedure did nothing to stop the AF.
Hence I opted for the Maze Procedure. As far as I am aware, I have had no recurrent episodes of AF since. I would certainly notice AF while running, if not during my daily activities. My experience is not unique, someone else from this forum went the same route
My AF was termed paroxysmal, increasing in frequency and duration, ever so slightly. Being otherwise healthy and fairly fit, it only bothered me while running. However, the (perceived) increased clotting risk was my major decision to opt for a radical intervention.
Needles to say, I only decided after a thorough research, and discussions with a cardiologist (who did not perform the surgery).
Personally I am delighted with the result. I hope, you too will find a good solution
Absolutely Paul and there will never be a definitive answer but out of 19K members, I anticipate that there will only be a small number who declare that the ablation did more harm than good. If the reasons are qualified, as is the case with CD and Globe-J, then this can only help in making an informed decision which is all to the good.
In Hindsight - I wish I hadn’t had my two ablations OR used any of the heart meds because it exacerbated autoimmune to such a degree I couldn’t do anything for 6 months - and I mean nothing!
Second ablation did stop my AF for nearly 3 years but that’s no help when I ended up in a far worse state then AF ever reduced me to.
There is a conversation, thank goodness, starting now that treatments for women should be looked at very differently & that anyone with known Autoimmune conditions and the precursors, including leaky gut syndrome should seek comprehensive advice from specialists other than cardiologists/EPs.
My first two ablations made my AF worse. I had more attacks and they lasted longer. The third one appeared to help a little, but has not cured the condition.
I just wish someone had persuaded me to try a healthier, additive free diet before I had any of them. I would probably have claimed that I did that already, but in reality I was still eating sweets, cake, biscuits and goodies.
Changing my diet has had the biggest effect on calming my AF. I give thanks to Hidden also, for highlighting how sugar can promote AF - it does.
I had 4 ablations in just over 2 years. First 2 were for SVT 6 months apart, then I was diagnosed with atrial flutter then AF so had another ablation that fixed the flutter but not the AF. No drugs could control it so 7 months later I was back in the cath lab. Now nearly 12 months on, I’m doing well. My last ablation has definitely improved my quality of life. I’m back at work (I was off work for a year) and enjoying my life again. It was an epic journey and hopefully I stay well for a long time. I’d call it a success (eventually anyway).
I've had 2 and they have been a great success, no downsides of any description for me.
FlapJack: I would appreciate it if you would make a finer distinction on this query. I think it would be helpful if we knew if the person was in the category of paroxysmal Afib or permanent Afib. I was in permanent Afib and so I realized that the ablation process may take 3 or 4 tries. Here we have Globe-J stating it was a waste of money. On top of that, Globe-J opted for a ridiculously expensive procedure called the Maze. This is where they stop your heart and put you on a heart-lung machine, then remove or should I say eliminate all connective tissue from the pulmonary veins down to the ventricle(?) The Maze Procedure is 100% effective and its risks are 100x higher than an ablation. So as far as I'm concerned Globe-J's experience does not add to the discussion. Here in the US, actually in St. Louis where the Maze Procedure was first implemented, the Maze Dept. has stated that they will not conduct an ablation via the Maze any longer unless there is an underlying problem like a valve malfunction. So, no more Mazes.
I understand and appreciate the point you are making but I intentionally didn’t want to make the question prescriptive because I think all we can hope for is a general consensus of views. I specifically asked responders to qualify their reasons so that others considering having an ablation, can determine whether or not the reasons expressed are likely effect them and consequently influence their decision to proceed, or not if offered an ablation.
Without wishing to prejudge the outcome, I would imagine the vast majority will confirm that, (by default), they are pleased they decided to have their ablation(s) which is likely to be helpful to others.
Hopefully, it will also prompt patients to make sure that any specific issues raised by those with negative experiences will not adversely effect them by raising it with their EP. This is by no means a precise science, but it may produce a better way for AF patients to evaluate whether or not to pursue ablation therapy because the general consensus of opinion from forum members who have had an ablation(s) is positive......
I absolutely agree that the question should be narrowed rather than all stages of AF lumped together, specifically in PAF or in persistent. Some members may not know the difference and then interpret the results incorrectly. But, it is most informative when a member gives a disease that will influence the outcome as CDreamer did. The stage of AF is not general. So, anyone in PAF wish they hadn't? anyone in in persistent AF ? anyone with an accompanying disease?
Overall, the question is brilliant and is bound to be most helpful for those considering ablation.
Again, the point of the question is us to enable us to confidently say to anyone considering having an ablation that when asked, less than x% of members have said they regret having an ablation because it has had an adverse affect on their quality of life. This can be said in conjunction with other important factors such as improvements to lifestyle changes, risks associated with an ablation and other related issues. At the moment, all we can say with some degree of confidence is that we rarely hear from anyone wishing they had not had an ablation which is a bit vague.
Well...my EP..Proff Osman..told me I would not notice an ' appreciable' difference in my quality of life,that ablation was not ' lifesaving or prolonging'
Hence my hesitation I'm going for it at this stage.
Not anti ablation but trying to best myself.
Also I think there are very interesting developments in treating AFib and flutter en route soon...
Interesting wilsond and can certainly understand your thinking about future developments in treatment. It occurs to me that age could be an issue though because testing, training and re-equipping hospitals is a costly and time consuming and when you get to my age, time is an important factor! 😩
I am pro-ablation. The benefit of an ablation outweigh the risks. I was in permanent Afib when I was first diagnosed when I was 56 and had two ablations 2018, and a third in March 2019. I had lots of consequences from the ablations like endless migraines, nerve pain to die for, painful urination, whatever, and I don't care. I hate Afib. I hate how it makes me feel, which is something like a tuning fork going off in my chest 24/7. Today I am still in NSR but if I revert to Afib in the future, I have only the future to look forward to and I think it is a bright one. Ablation is steadily getting much better and less invasive. Medicine and medical technology will prevail.
Whilst I’m not 100% free of either A-Fib or SVT, I certainly have no regrets, and would happily have another ablation if it were needed. I do think lifestyle changes can make a bigger difference in some, either way you are rolling a dice to a degree. But remembering my life pre ablation was enough to make me forget any risks associated with the procedure.
I really appreciate your asking your question in this way, Flapjack. I've had one ablation, with moderate success, but I think the most important upside was that they let me go off the amiodarone, which was horrific for me. I'm only on Eliquis now (I had a stroke before they discovered the AFib two months later) and I take Metoprolol and Flecainide as PIP.
Before the ablation I had episodes about 4 weeks apart, and that hasn't changed much, but the episodes don't land me in the hospital anymore. But I've also radically altered my diet and made other life-style changes (cut out sugar, no cow dairy, no gluten, no alcohol, no coffee) so I'm not even sure that the ablation made the most significant difference (I think the amiodarone made things worse, not better, so just getting off the amiodarone was a big help).
Since December, I've been working with a doctor (osteopathic) who focuses on autonomic nervous system problems, and am finally starting to see a bit of progress (primarily from my new vagus nerve stimulation device, I think) but also from a series of targeted antibiotic doses (Xifaxin) to address SIBO (Small Intestine Bacterial Overgrowth) that he has found can completely throw off the autonomic nervous system and create all kinds of symptoms, including arrhythmias. This is also related to brain injuries like concussions (or strokes, as in my case). I know my ectopics are MUCH better since beginning his protocol. But he says to think of the healing process as taking a year or more, since neural healing is so slow.
But I've also decided that if the episodes increase in frequency or intensity, I will consider having another ablation.
Thank you for your detailed response. Having been involved in this forum for nearly six years, one of the most frequently asked questions is “should I have an ablation” and it is always a difficult question to answer because there are so many variables. We always mention the risks, even though they are considered low and the benefits that lifestyle changes offer before having an ablation. I talk about how rare it is for us to hear from folk actually saying they wished they hadn’t had an ablation and it was really that which prompted me to ask the direct question. Although there have been some valuable qualifications, the general response so far has been quite positive but it is early days. I think it is generally accepted now that an ablation rarely cures AF but it generally does make a major contribution to helping to control symptoms, so I expect managing patients expectations is an important part of the equation.
Hello, new to HU and this forum—may I insert a quick question? I am considering ablation for increasing PAF episodes, but yours is the first mention of vagus stimulation devices I have seen. Recently purchased the Dolphin Stimulation device. Where is it appropriate to post further questions about vagal stim devices as an alternative to ablation? My cardio docs all “suggest” ablation, but admit it may take 2 or 3 to really help, which is daunting. I apologize for being too far off-topic… appreciate all commenters!
The success rate for PAF is about 60-70% for a first procedure; about 40% for AF for first procedure (if there are no other relevant conditions). However, “success” does not mean that the procedure is necessarily very durable- you may get a return of AF or PAF afterwards. The risk of a serious complication is about 4.5%. Plus you get a lot of radiation. All in all, imo, not a very good deal. But ablation is really all that is available, that’s the problem.
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Thanks for your reply however the question is more about folk having regrets after their ablation because it actually had an adverse affect on their quality of life. I think the success issues are well documented and clearly need to be taken into account before deciding to proceed......
Yes, the fluoroscopy involves a fairly stiff dose of x-ray. It’s mentioned as a risk on some hospital websites but not others. Rarely, some people get radiation burns.
After my first ablation and ending up a week later in hospital for three days with AF, I 100% questioned why the hell did I have the ablation. My meds were changed from Sotalol to Flecianide and I was fine for three months, went cold turkey and was ok for another 10 weeks and then bang, two heavy episodes of prolonged A flutter and was given a second ablation within 10 days. It was explained before the second ablation that it was a different procedure than the first and is quite common to have two done I am hoping I will be OK and having done all the major life style changes 6 years ago, I feel on one hand I am lucky to have such experts do such a complex procedure but on the other I still haven't cured my fear and apprehension of it returning and i'm sure that doesn't help, so maybe that is the area I should be more confident with and hopefully I can to give my recover its best shot.
I have been discharged from the cardiologist 's clinic, to continue on Apixaban and have a pip of 50mg flecainide. If I have further episodes I will be referred back with a view to cryo ablation. A friend said that the procedure is in experimental stage. I haven't been able to verify this. What is the experience and knowledge of this forum?
Your friend is mis-informed. I had a cryoablation in 2016 and they were being carried out many years before that. I suggest that you take a look at the pinned post to the right of this page - “Useful links for Newbies and Oldies”. That will enable easy access to lots of useful information on AF including details on ablations......
hi Cam, I had a cryoblation in May. Although I was very nervous about the procedure, but it was very straightforward. I think it took less than an hour from going down to theatre to waking up in recovery room…
Are you saying your Cardiologist has prescribed 50mg Flecainide to be taken only once in the event of you having an AF episode?
Yes it wasn't very clear. I had a telephone conversation with my gp last week and he said he didn't completely understand the letter! What hope of I got. He said to reduce the bisoprolol from 5mg to 2.5 for 4 weeks then stop but I am nervous as I feel that slight reduction in heart rate and calming effect is good for me. I think I mentioned in a previous post that I felt rushed in the consultation.
Well first I must make it clear that I’m not medically trained so I cannot comment on what appears to have been prescribed. However, generally when Flecainide is prescribed as a PiP (pill in the pocket) the single dose is normally 300 mgs, in some cases slightly less. It is crucial that 300mgs is NOT exceeded within any 24 hour period. I think you should seek clarification via your Cardiologist’s secretary. Taking 50 mgs as a PiP will achieve very little as this is half the normal daily dose when it is prescribed as a maintenance dose.
I had my first ablation in 2011 and was told by my EP before leaving the hospital that I would require another. This was absolutely true and the second one was in April 2012. I was unable to take things easy afterwards as my hubby was admitted for a Heart Transplant
the following week! However, I was AF free for almost five years. On the 1st March 2017 I had my third ablation which seemed to be successful. My meds were reduced afterwards and then further reduced at my instigation and that's when the problems started. I have AF and can also have episodes of Flutter.
My next ablation is on Thursday so my fingers and toes are all crossed.
Yes I would have them again. Ever the optimist I live in hope. Also, since the last ablation the thumping in the chest is not as severe and I find I can at least sleep which makes it more bearable.
The success rate of catheter ablation in the treatment of AF varies depending on the type and duration of AF (ie, paroxysmal vs persistent), structural remodeling of the heart, and the technique and expertise of the cardiac electrophysiologist, but it usually ranges from 60-80% over 1-2 years of follow-up.
At the risk of not answering the question, I would just like to say I do NOT regret having had 2 ablations. I had AF 10 years and it became persistent- i.e. non- stop - for 5 months, so I was warned it was harder to treat. The first ablation only lasted 8 months, but the second has improved my QOL immensely. Episodes are now short - maybe a few minutes, up to half an hour and I can go a month or 2 without any and I can cope with them better.
But I think my expectations should have been better managed. A cure for Persistent AF is difficult if you want no AF ever again and no meds. I prefer to think of it being " held at bay" as I am in sinus rhythm 99% of the time. Compared to my heart banging away like a caged beast day and night , enlarging my heart as it battered away, it is wonderful. But I am still on Flecainide and Bisoprolol and taling Magnesium, and I would prefer not to be.
I wish I had had the ablations earlier, and I wish the first ablation had been more radical. One consultant told me the practice is to do the Pulmonary Veins in the first ablation and then, if that doesn't work, go for the other areas (in the "box" as he called it) with the second. It would be standard procedure for this EP to be more radical with the first ablation if he were working privately, but not in the NHS. All food for thought.
Hi FlapJack, my husband John has had 1 ablation (in March 2019) and is now awaiting his 2nd - he does not regret having it but just wished it had lasted longer than 4 months. He had a cardio version early December 2019 which has put him back into the land of the normal living and he feels great again but we both sometimes think he's living with a time bomb - just waiting for the next episode of AF. We try not to dwell on this but its difficult.
My husband had his first ablation in November 2018 & is now waiting for his second. He doesn’t regret it either. He tends to have 6/7 days in AF followed by 3/4/5 days in SR. It’s frustrating, but it’s a pattern he’s getting used to.
Would it be possible to have an uncomplicated yes/no vote on overall satisfaction with Ablation? I am just diagnosed and been in permanent AF for about 6 weeks and awaiting nhs cardiologist referral. Its a good question and really relevant to the newly diagnosed with ‘straightforward’ AF. However responses so far are making it hard for me to judge in view of other complicating conditions.
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Having been involved with this forum, I know it is impossible to get a simple yes or no answer. Earlier in the year I asked if people would be prepared to have the jab and specifically asked if they would restrict their replies to either a 👍 or 👎
Impossible - once the conspiracy theorist’s got started, admin had to delete the post!!
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