I am so disappointed with the outcome of my abalation. 9 months after my abalation I am getting AF episodes again.
As I am writing this and I am having an AF episode . I have just taken 100mg of Flecanide.
I had a short episode this morning however most of my episodes are when I go to bed.
I am back on the meds after coming off them. This is condition is really getting me down and interrupting my sleep.
Murphy so sorry to hear you so down. I don’t think you are alone in this as one ablation is probably not enough for you, but very disappointing that it has only been 9 months. Perhaps if you decide to do a top up it will be more of a success next time. At least you have made a start, so don’t give up, you will get there in the end.
Thanks for the kind words Cavalier-rubie.
I will make another appointment with my cardiologist to see what they recommend. It seems this AF is such a difficult condition to treat
It certainly is a difficult condition. We just have to aim at the best quality of life that is possible. It is a battle and difficult at times, but could be a worse prognosis. Pleased to hear you are more positive and hope you will get some good advice from your Cardiologist in going forwards. You will be ok. This is the first step to improving your health.
Unfortunately this condition has ended my career as AF was seen to be high risk.
While it is not terminal, since having the condition it has been a real struggle to live a normal life worrying about having the next episode.
I would like to travel overseas but worry about having an episode.
It would be great if the Abalation could provide a better success rate. I hear of people of having three or more on this forum and still have not resolved their AF.
If I was to have another Abalation is it recommended to use the same Electrophysiologist that did my first one or should I try a different Electo?
I am in Australia so I pay high health insurance to cover procedure costs.
I don’t know what to advise here Murphy. Has your EP a good reputation and experienced? How many ablations has he done? If you are not happy then go elsewhere. I am having AF worse at the moment and waiting for referral to EP with possible ablation. The aim for me is to get this monster under control because as it progresses it can make life a misery, It gives me anxiety that l never had before. I would go with whatever your cardiac suggests. They know what they are dealing with, your personal history and what is best for you, Keep us updated and best of luck.
I feel your pain in terms of the anxiety with AF.
My EP who did my abalation seems experienced and he advised he does approximately 5 per week. I was thinking if I go to another EP will they have all the images from the mapping of my heart and history?
But then again he was the quickest EP I could get to see where others had waiting periods of up to 6 months.
In Australia under private health you can get into see an EP of your choice but it is hard to determine with any certainty how good an EP is in terms of their success rate.
You’re allowed to feel disappointed Murphy. We pin such hope on the few treatment options we have for AF and yet we know there is no real cure and that those rogue cells, like a herd of clever goats, can find a way out of the pen for reasons beyond our control. I hope you’ll be offered a second chance with a touch up ablation. Are you back in touch with the cardio team?
Thanks Rainfern
I will try and speak with my cardiologist today. I had eight months with no Af following my abalation but it seems I am back to having an episode each month.
Not too sure whether undergoing another abalation will be successful in getting rid of AF.
It really disrupted your life.
It's what I call the tyranny of AF. Everyone here will understand.
How much of the 9 months was on meds / when did you come off them, and what effect did that have?
Sometimes a combination of ablation plus meds (typically Flecainide) is needed and can be effective. I had a good 15 years after my first ablation+top-up pair, but eventually I just went back on 200 mg/day of Flecainide for most of the 15 years (before a huge open-heart surgery brought my AF back.)
If your episodes are mainly at night, it could be that your AF is the sub-type called vagally-mediated - for this, a slow heart rate tends to trigger, as in sleep the rate naturally falls. If you're on Flecainide, and if you're only taking 1 a day then take it before you go to bed. If split doses a.m./p.m. then just keep it up. My AF always has vagal patterns too and I find a *small* snack just before bed tends to settle my heart, too. This sort of AF can be made worse by beta-blockers.
And yes, another ablation is a possible.
I hope you can find the right recipe to get it under control and to allow you to sleep properly.
Thanks Cliff
Most episodes were when I went to bed. I was a little anxious last night as I had a very short episode that morning.
I came off the meds at the 6 month period. But 2 months coming off the meds I had an episode. I am taking 180mg Diltrizam slow release in the morning and half 50mg tablet of Flec. before I go to bed. However I still had an episode again 4 weeks later.
I was hoping to be med free but even before the abalation I would have an episode once a month. It seems the AF is back.
All figures.
After my first+top-up ablations, I found Diltiazem was aggravating my vagal AF and giving me a lot of ectopics (same as a beta blocker would, as Diltiazem also slows heart rate). I almost went for a third ablation back then, until I found by accident that this was happening.
I'm currently, after my post-surgery actual third ablation, on 60 mg slow release Dilt once and 100 mg Flec twice a day. Half of a 50 mg Flec is really nothing.
If my experience is anything to go by, reducing the Diltiazem and upping the Flec may help. Obviously your cardiologist/EP would need to approve that, as on decent mgs of Flec you need a good-looking ECG and echo.
Good luck. Hope and Determination are the keywords.
I feel your pain and disappointment I also had afib return after 6 months. I was really down about it as I had done all the right things eating right no alcohol then boom back it came.
It was my 3rd ablation so my electrophysiologist said no more.
I think it's common knowledge that there is no cure going down the ablation route but each one does improve things .
You will feel better so I'd go for another one or even two.
Thank you. I was looking at seeing whether a Pulse Field Abalation may be worth considering. Lower risk and early days but the results seem promising.
I noticed there has been some updates on this Forum speaking very highly of Pulse Field Abalation.
I am reasonably fit and healthy but the AF episodes just drain my energy levels.
I should have drinked and smoked then I would have something to blame for this condition — 😂
Ha Ha yes you might as well have done everything you shouldn't.
Pulse field is not available in New Zealand but I'd go for it if it were you.
Try rate control drugs while your waiting I found diltiazam 120mg a night controlled afib quite well and magnesium glycinate of course.
Good luck ill be keeping an eye on your progress
Thank you. Having 3 abalations yourself shows me how determined you were in trying to beat this condition.
There is only a couple EPs in Sydney that offer Pulse Field. When I asked my EP 9 months ago about Pulse Field he indicated it is still very early stages and he would want to see more results before moving towards this method but did admit early results seem very promising.
I had a Pulsed Field Ablation 10 days ago. My first and only hopefully! I could have had Cryablation 8 months ago, but I decided to hold off as I knew PFA was coming. I am in Far North Qld. PFA is safer as the 2000 volts of DC current are on a wavelength that only affects heart tissue. So there is no possible damage to nerves and other structures that is possible with RF or cryo.
As it is a fairly new technology, they don't have the long-term stats, and I feel like PFA targets the pulmonary veins better than Cryo. If you google "does pulsed field ablation scar better than cryoablation," it presents this: - Pulsed-field ablation (PFA) can create more consistent scar formation than cryoablation, which can be important for treating difficult arrhythmias.
The EP told me the great thing about PFA is it is easier to do for the team, 1 to 1.5 hours compared to perhaps 4 hours with Cryo. I think it is also a better procedure for an EP without as much experience.
I was back to work after 6 days; very fast recovery.
I am to continue taking 50mg of Flec and 50mg of Dilt twice daily for 4 weeks along with the blood thinner for a total of 8 weeks post-op.
What part of OZ are you in?
Thanks OzRob.
My recovery from RF abalation was pretty quick. It is mainly the wound in the groin that I had to keep an eye on.
I am located in Sydney. There are a couple of EPs doing Pulse Field. My EP advised me when I had my first abalation indicated it was too early to say how successful Pulse Field would be and recommended RF.
The worst experience for me with RF was the general anaesthetic. I was out for 3 hours and sick afterwards and of course the AF has returned. Was good for 7 months but now looking at another Abalation and considering going to another EP who does the Pulse Field.
Good luck with your recovery and hopefully the Pulse Field has put your condition to bed😴
Hi, thanks for sharing. When your Afib returned, was it paroxysmal or persistent?
Thanks for the advice. It seems a lot of trial and error. I have tried beta blockers and lower dose of Diltiazem 40mg fast release with no success and now back on 180mg slow release.
I will talk with my cardiologist and perhaps make an appointment with my electrophysiologist to see what they recommend.
You should discuss having another ablation with your EP. It’s not unusual to need two or more to fix things. Everything depends on the state of *your* heart- there isn’t a generic probability of success. If the left atrium is enlarged, for example, that makes things potentially more difficult. As for whether you should find a new doctor for the procedure, choose one who has conducted the procedure many times. Number of ablations performed over a given period correlates with success.
Thanks. The EP that did my first RF abalation indicated a 70% success rate. Yes my left atrium is slightly enlarged. He does a lot of abalations generally 2 each day approximately 6 a week. However there was no real waiting time when I decided to have it done compared to another EP who had a 6 month waiting period. Not sure whether that indicates that he is good.
I am thinking going to an EP that does Pulse Field as the evidence indicates it is safer and may obtain higher success rates but early days.
I sympathise because same happened to me. Since my ablation a year ago I have had 3 ‘proper’ AF episodes, all at night or early hours. I have been doing everything right but AF is a sneaky devil that cares not for our efforts.
Currently, in order to avoid triggering it, I am sleeping on my right side, rather than my back. I know that sounds mad, but it’s a way I can feel some control, even if I logically know that AF is in control!
I take 100mg flec as PiP and am on Apixaban anticoagulant.
I am unsure whether to try another ablation as I have a feeling that it won’t fix it.
Sorry to hear you are in the same boat as myself. I am considering another Abalation if it gives me freedom but I suppose people that have had great results probably are not on this site.
I am now taking 50mg of Flec. to see if it will control the beast. When I have had a flare up I am taking 100mg as a PiP and generally within 3 -4 hours back into Sinus Rhythm.
Have you been tested for sleep apnea?
No. However most times I get it before I fall asleep. My wife tells me I talk a lot in my sleep 😂
Are you aware of the minimaze procedure invented by Dr Wolf at Houston Methodist DeBakey Heart Centre? It's good to be aware of alternative treatments, although I do realise this option is not available (for various reasons) to all. But I have read on the Forum of Australians who have successfully travelled to Tokyo to undergo a similar procedure by Dr Wolf's colleague, Dr Ohtsuka.
Good luck
Thanks. I had heard about it but do not know much about it. I wonder why it is not widely published as an alternative.
It's a procedure not performed by EPs, so EPs are not interested in promoting it as an option. It is performed by a cardiac surgeon and ablates nerves on the outside of the heart with access via small wounds on each side of the chest. A small but increasing number of UK patients are undergoing a similar procedure here in UK, both privately and within the NHS.
I recommend looking at the Posts and Replies of saulger who travelled from Greece to Tokyo for the procedure with Dr Ohtsuka. See here ...
Hi Murphy sorry to hear this. My father is considering whether he should continue with the ablation as he is worried about recurrence as well.
Which type of ablation did you have - RF, Cryo or Pulsed field Ablation? Did you have paroxysmal AF or persistent AF before you had the ablation.
I noticed that you said most episodes are when you go to bed. Do you have sleep apnea by any chance and had treatment for it? If not, then I would suggest you look into sleep study.
I haven't slept well in years so do appreciate the way you feel. If I get AF at night, I, too, find it hard going and struggle to sleep. I have been able to do this, though, with a quarter of a pill called zolpidem. I have used this for years now and it has never shown any tendency to either being addictive or to cause next day drowsiness. It might help you? It is, of course, only on prescription and should be used only as and when truly needed.
Steve
Thanks Ppiman that is useful. I find when I try to sleep with AF I just toss and turn . I feel my heart missing beats and racing. I do try deep breathing however this AF just makes me so uncomfortable.
I know what you mean with the tossing and turning. I had AF throughout the whole of last night (although not too fast, averaging 100bpm or less. I decided to take a 5mg diazepam tablet on going to bed, and then I had to add in a quarter of a 10mg zolpidem tablet (I use a pill cutter) at around 3am, which helped me sleep passably well. If I hadn't, I would have had a dreadful day today, and I have two students coming for their English tuition. That's the problem with poor sleep, and I just cannot nap the next day no matter how I try.
If you keep sleep aid tablets for only when really needed, your doctor might be willing to prescribe them. They are reluctant these days to help anyone with sleep issues for fear of "addiction" but for use during AF, I think they work well.
Steve
Hi Murphy, Don't know if this will help, but my Primary Care Physician sent me for a sleep study when she saw my a-fib history. The results showed moderate sleep apnea, which can contribute to a-fib attacks. I now use a CPAP machine at night. The first week or two, I wanted to throw the thing away, but have now found a good fitting mask, and use it every night. I had an ablation 8 months ago, before the sleep study. I did a bit of research, and one article I read indicated that CPAP therapy did increase the success rate of ablations. I'm so sorry you are experiencing this. I feel that my ablation gave me my freedom back ( I was passing out from some of my a-fib attacks ) and wasn't allowed to drive until I received the ablation. I know you must feel heart-broken to have this rear its ugly head again! My best to you, and I hope you find what will work for you!
Thank you for your kind words. I don’t suffer from sleep apnea. I am looking at having a second abalation as I feel living with AF is like living on a knife edge.
I hope you continue to be AF free. I dream of that day🤞
Be sure that what you are experiencing is really the return of AFib. I had 2 episodes at 4 years after ablation but they were diagnosed as SVT, not AFib. I am having an ablation for the SVT in December.
I assume it is AF as my heart is missing beats and generally does not go over 120bpm. I believe SVT is a racing hear rate.
I was told that 3 ablations were needed for the best outcome. I’ve had my first end February and so far ok 👍🏻🤞🏻
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