I have an appointment for my ablation at the end of February and although I'm a little anxious I have no problem at all with the procedure. However, a little bit of doubt has started to creep in. I've posted on here many a time and I don't want to bore people too much, so I will try to keep it short....
I was prescribed Amiodarone when first diagnosed with AF. I stuck to this for 18 months and changed to Flecainide, everything was good. Not long after my AF episodes became weekly, all be it not very symptomatic. The episodes could last for anything up to 3 days, but usually would be about a week apart. I started to lose weight and the episodes increased and not long after I was diagnosed with and Overactive Thyroid. My AF became more frequent and started to last longer. I couldn't take part in any of my hobbies, as they were quite active and to be honest I was quite down in the dumps.
I then saw my EP and in November we decided ablation was the route to go down. I did ask my EP if my thyroid condition could have worsened my AF, but he said even it did the Flecainide should control it, which it didn't appear to be doing .
Now! My thyroid appears to have recovered from the Amiodarone and I am back to the weight and fitness I was prior to the issues. I have had no AF for over two months and if I'm honest keep pushing the limits to see if I can trigger an episode, but as yet no episode. I have also cut back on my Flecainide from 100mg twice daily to cutting a tablet in half and taking approx 50mg twice a day. I've done this now for 3 weeks and still no AF. As I state at the beginning I have no issue with the Ablation procedure, but I'm aware once they start burning, I may only get several years AF free before another is required (Assuming it only takes one procedure). The niggle at the back of my mind is should I stick with the medication, as I have no side effects and no issue with taking it and hope I get a few more years before the AF progresses or do I go in for the ablation knowing this is not a permanent fix and I may be limited to the amount of time I can have the procedure.
Thanks for taking the time to read,
Jason
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Jason1971
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I have thought like this many times in the past and each time I think I will wait the A.F. comes back with a vengeance so I would say go for it. Is there a chance though that the amiodrone affecting the thyroid may have been worsening the A.F.? If so you may not have ever had such frequent episodes if it hadn't been for the amiodrone. Do you know why you were put on this to start with? It is a very potent drug to use if the A.F. wasn't too bad. Sorry I've not been much help but I agree it is a very difficult decision to make when your symptoms are not causing a problem. Good luck.x
Hi dedeottie, the amiodarone was definitely the cause of my Thyroid issues and knowing full well about the side effects that's why I requested I be taken off it. I have no idea why I was placed on it in the first place. I had over six months of episodes lasting at least 36 hours, but now my thyroid is under control the episodes have stopped, for now.
If things aren't broken at the moment and medication is effective I personally wouldn't bother trying to fix it via an ablation. I have had 2 ablations since July 2014 and although the frequency of my episodes have decreased, I still have episodes which are symptomatic (had one last night and off work today as it's still battering away at 140bpm).
The first ablation was for AF in my left atrium. 2 weeks after the op I went into AT which was continuous for 2 months until I had a 2nd ablation this time in my right atrium. The one thing which is working for me now is flecainide which helps my symptoms and I usually revert after about 12-14 hours providing I take a double hit (200mg). I have been offered a third ablation but at the moment I can live with the symptoms when I have an episode as I know the drugs will be effective and it's only for a predictable length of time. I suppose what I'm saying is, I'm in control and can live a relatively normal life. If this changes drastically then I will have no hesitation to get back on the table but I'm in no rush and I don't think you should be either if what you are currently doing works!
Thanks for the reply Andy. When my thyroid started to be controlled I noticed the Flec was becoming more effective. At first I noticed like you a 2 x 100MG hit would put me back in NSR in several hours. As time moved on my episodes became less frequent and when I had one the Flec would bring me out in about 2 hours. I haven't had an episode for a while. Prior to the thyroid issues I had a good understanding of my AF and knew what could bring on an episode.
I have had one ablation but my last ECG showed it was back albeit only very short episode and I was unaware of it. At first my ep just assumed he would do another but after discussion I decided to wait as I feel good and he agreed that maybe best to wait as no symtoms and short episode. I have felt nothing over the last few months and my alivecor monitor has not picked up anything.
I meet again in April and will monitor as I go. So I would say assk to see EP again and see whats he says about delaying it for another few months.
I am not on any drugs except warfarin.
I too surprised you were put on amiodrone. My ep says it is is something he would not prescribe and certainly a last resort.
Thanks lallym. I think my EP may be on this forum, as my wife called to say the hospital called about an hour ago and I have a missed call on my mobile. I'll discuss it with him.
Hi, Jason. Things are sounding pretty good for you. I would be inclined not to say that you don't want an ablation, but perhaps discuss with your EP and ask to postpone. In other words don't go off the waiting list 'cos if things suddenly turn pear shaped, you will be at the bottom of the ladder. I have to say that my EP's waiting list was a year long when I saw him in November. Your EP may not be as clogged up. I'm currently on the list - not because I need an ablation, but because I can always postpone when I get to the top. I do still get AF - was struck down slightly for a few hours a couple of days ago, irritatingly, after a clear spell of almost three months - but it isn't really a problem for the time being. I'm really pleased to be as I am and off flecainide. But who knows what's ahead?
I think that is a very good suggestion. The longest I have gone without an episode was 6 months whilst on the amiodarone. I think a discussion needs to be had with my EP and see if we can delay things slightly.
Jason, I was at a similar stage last year between July and September my life pretty much returned to normal whereby I did all my fitness work and also being the summer months was back on the alcohol sociall and I had no episodes, happy days croaked it.
I had even came off my 2 x 50mg pd Flecainide and agreed I could go PTP, which I think I only needed once.
However come mid October whilst on holiday, bang it was back.
On returning from holiday by day it was getting worse and the PTP was not working, early Movember EP put me on Dronedarone, that gave a week free of AF, and then was pretty much an episodes every day (mainly throughout the night).
Early December was put back on Flecainide & Bisoprolol again had a week free of AF only for it to get more aggressive, Xmas a particularly bad time.
Agreed to on research programm for ablation as meds were clearly not working for me, I always used to ask the question to my EP how do we know episodes would not actually stop anyway without meds, one point I have always pondered.
My ablation is now the 17th February which I feel is my only option, to at least get some QOL back, start with being able to do some exercise would be a start, ends last week for the first time since having AF I ha d to cry off from golf as in AF For 29hrs.
Good luck with your ablation.
PS
Was diagnosed PAF March14, and I have beenleft staggered how quickly mine has progressed, massive impact across all aspects of my like including family and friends.
I recall when first seeing my cardiologist in April14, show pretty much dismissed AF not impacting on my life, wow some statement that was.
OK, grammar or lack of isn't a problem. Although everyone should know a) to not split an infinitive and b) that a preposition is not be used to end a sentence with.
Actually, can I mention that there is one atrium and two atria, as in medium and media and stadium and stadiums. Or stadia.
Thanks Mick. I wouldn't have any hesitation whatsoever if my AF had been symptomatic. I did think it was progressing at an alarming rate in the summer, but things have settled down.
Hi Jason - I'm wondering why you are on Amiodarone, as others have said it's usually a last resort medication? Were you in a situation where your heart wouldn't stop racing? It's difficult for anyone on here to advise you: 1. Because we don't know your history. 2. Every case of AF is mostly unique to each individual, so what suits one may not suit another. 3. We are not medically qualified to do so.
Having said that, we can speak from our own experience. Having had two unsuccessful ablations and now being told that because of the extensive scarring in my heart I can't be considered for another was a bitter blow for me. However, as a result of the ablations I can now walk up hills without my heart banging away in my chest ( I didn't realise other peoples hearts didn't do that). Hills are nowhere near the problem they used to be for me. I would huff and puff and keep stopping for a rest. Now I'm like a mountain goat and when not in AF can almost race up.
Like you, I was hesitant about my first ablation but then told myself that the medical experts knew best. I have to say that with each of my ablations my tachycardia worsened. My pulse can now race for months, instead of hours and will usually only go back into sinus rhythm after cardioversions. This is just my experience, others on here may tell you an entirely different story, as I said we are all affected so differently. My attacks generally come every 6-8 weeks. Is there a pattern to yours?
I would like to say perhaps postpone your ablation, but we all know 'sods law'. Perhaps ask your EP's secretary when you could next be down for an ablation if you postponed the one in February.
Thanks Jean. I had read your experiences before and it's experiences like yours that leave me in a little bit of doubt. The amiodarone I believe was just a case of the Cardiologist at the time not really listening to my history. I would hasten to add that the 2nd cardiologist I saw was excellent and I was thankful for his advice. I'm very fortunate that my AF doesn't at the moment bring me to a standstill and other than rigorous exercise I'm not really limited. However, my quality of life does involve rigorous exercise and based on that, that's why my EP suggested we go for the ablation. Things have slightly changes, hence my original post.
When I first started reading posts on this website , there was a very positive feeling about ablation . Those who had had one had mostly good things to say although some people still had to stay on medication to get the benefit. This seemed to fit in with the predicted success rate of 60_85 % given for someone in p.a.f. with no other heart health issues. So, when my A.F. increased to 70% of the time, I decided to go ahead with ablation before it progressed to being persistent or permanent. I don't regret my decision because if I don't try I may regret it later. I am now only 2 weeks away from having the procedure and fingers crossed things will be better.However, as other people have noticed, over the last few months , there have been a lot of obviously honest comments from people who have had unsuccessful ablation even after 2 or 3 attempts. Some people have even said their A.F. has even been worse than before. This would be my idea of disaster!
Despite the above I remain sure I am doing the right thing for me but I so understand those who decide to give it a miss. Just be a bit clever and make sure you don't leave it till the odds are against you.xx
I think your quandry is shared by many, The problem as I understand it is not so much should I have an ablation, but when should I have an ablation
And the challenge is not just am I symptomatic enough, but also what damage to happening to my heart?
I think we all know and expect that the longer you have AF the less successful certainly an initial ablation is likely to be (although better with paroxsymal than persistent I understand)
So the symptom approach seems like a good idea in part, I mean how long do you hold on, with one graph going down and one going up? Is there a point at which the decision makes more sense?
But in the meantime, is the left atria enlarging?, is your ejection fracion getting worse? These are the behind the scenes non symptom challenges we need answers to.
I'm sorry if I pose more questions than answers, but this does seem to be one of the hardest decisions for any of us to make.
From my personal experience and from posts on here, there have been more negative than positive posts regarding ablation, which leaves a very open field which way a personal decision should fall on.
My EP Is very much on the side of ablation, particularly if prescribed meds are or haven't worked as is my case, albeit, bar last weekend I have had a good couple of weeks since coming off flecainide, now only Bisoprolol and controlled diet, note not a weigh loss one, I was very fit for my age and was of good weight.
I feel therefore I have no choice, being only 55 I have to get some QOL back, this AF has pretty much consumed my life the last two months, so there has to be some relief somewhere, one hopes anyway.
Hi Mick. Your AF sounds very similar to mine in frequency but your episodes last an awful lot longer. I had an EP study and ablation in Oct 2014. Unfortunately it has not worked for me but to appease any doubt you have, I definitely do not regret it. The EP study showed I have SVTs and on further investigation, my atrial flutter is actually atypical. (Quite rare). This all does not mean much to me but it has given my EP a clearer understanding of my prognosis and what treatment should entail for me. I feel reassured by the fact that we know exactly what is going on now and what is driving my AF. my EP said he would not rush to do another ablation as there is no golden answer for me but he also won't rule it out in the future. I would certainly go for it again. Hope that is helpful in some way as it must be disheartening reading unsuccessful stories..but MANY are successful and i do not regret mine at all. I have had monthly appts with my EP since and been more thoroughly monitored and that would not have happened if I hadn't had the ablation. Best wishes
Have found it incredibly difficult to get my head round it, the right or the wrong decision for this Ablation.
There are still a lot of posts whereby Ablations have not worked first time round, second for some, which must be awful, when we cling onto to so much hope.
I have done more than enough research on success stats which are quite high on the positive side, also discussed at length with my EP, his responds positively, but then again those same questions have probably been thrown at him thousands of times, hence he probably goes off script.
However the decision is made, roll on the 17th February get it done and dusted and all things x,dd it goes well.
Good points Ian. My last scan was a year ago and afterwards the nurse asked me why I was there. A few months on from then I was having regular episodes, so I have no idea what stress has been caused. I guess looking at the figures (Something you will be more than acquainted with) best case scenario is first time fix and a possible 5 years without medication. That would put me at 48, but I guess there are only so many repeat procedures I can have before they don't become an option after all there is only so much they can burn. My worry is that would still leave me fairly young-ish and barring a cure for AF leaves me in a little limbo.
Still I'll go with the expert and I do know currently I am in a better position than some poor folk.
Thanks for the good wishes both. Jason it is a good idea to put it in the hands of the professionals. They don't want to do the procedure if in their opinion the risks outweigh the benefits. I asked my. E.P. what he would do in my position and without hesitating he said he would go for it so that was that for me.x
I think you will know when it's a sensible option like Dedeottie has found for herself. It must be that symptoms make you feel the risk is worthwhile.
The other point that hasn't been mentioned is that new techniques and treatments are being worked on all the time- e g use of MRI scans to determine existing fibrosis of the heart- which is a good predictor of success or otherwise with ablation so if it's not vital straight away why not wait to see what evolves- you can also find out the state of your heart muscle and function and if there's no impairment so far, again perhaps OK to wait?
I hope you continue to have fewer episodes- in my case having sufficient potassium in my diet has helped
Flecainide made my AF worse 10 years ago, and also when we tried it again last year. I know it works for a lot of people or most even, but not all. We had to try various other drugs to get one for me.
Just FYI there was a research document came from Australia stating ablation can be more effective if carried out early in a patients AF diagnosis, especially PAF. I will try and find it and post. Your EP should be aware of it.
I had an ablation 6 years ago, it lasted for 5 years and because of my age (66) it wasn't recommended that I have another I am now taking Bisoprolol 3.75 once daily. All ok at present. I would discuss this with your Cardio and EP, maybe best left until you really need it if you need it. Good luck with whatever the decision and keep well.
Pat
Hi Jason, my money is follow your hunch and postpone an ablation but avoid complacency by working on lifestyle changes.
Of course, there is a lot of your individual detail that could change this viewpoint and also your medics advice. I am wary of EP's advice, particularly if you are on low dose Flec (i'm jealous as still on 200mg Flec) and QOL is reasonable. I agree with Rosemary the procedures are getting better all the time.
if you pass this by , some time in the future you may not be in as good health as you are now and maybe not be in a position then to have a abalation, plus youll be older too, 6 months after I had my abalation I was diagnosed with prostate cancer, fortunatley I was fit enough and had it sucessfully removed..didnt see that coming !
" The niggle at the back of my mind is should I stick with the medication, as I have no side effects and no issue with taking it and hope I get a few more years before the AF progresses or do I go in for the ablation knowing this is not a permanent fix and I may be limited to the amount of time I can have the procedure. "
Listen to your heart, Jason (no pun intended). Ablations don't always work. My insurance cost to me was $1800 US, and lost wages, ....
Thank you all so much for your experiences, advice and thoughts. I have spoken with my EP'S secretary who has passed on my thoughts and concerns, so I await his call. As far as I'm concerned it's his shout and if he thinks ablation is the most appropriate route, then so be it.
The 6 months running up to Christmas were the worst so far in my AF journey and the weekly episodes only made me think my AF was progressing and if it wasn't addressed, then the odds of any successful procedure would be slim. I had an underlying thyroid issue, but I couldn't get a definitive answer from the Cardiologist, Endocrinologist or Electrophysiologist whether or not that was causing my AF to worsen. I may just be having a lucky break at the moment and maybe I should heed orchardworker's advice and" Avoid complacency by working on lifestyle changes". Time will tell.
Thanks for that, Jason. It's been an interesting discussion, relevant to lots of us. I'm sure it's wise to follow your EP's lead. No doubt you will keep us in touch and we look forward to hearing progress as and when.
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