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Undecided on 3rd ablation

ETFCfan profile image
60 Replies

I saw my EP two weeks ago after being referred back. I am in permanent AF again after two cardioversions and two ablations in 2016. The second one lasted about 18 months when I had two events of palpitations then in January this year I went back into permanent AF. I’ve been told I’m suitable for a third ablation but it’s up to me. I’m feeling pretty awful so tired and breathless up stairs etc but there are two things holding me back, my dose of bisoprolol has been increased to 10mg and although I tolerated 1.5 mg I am wondering if it could be this not the AF making me feel so bad. Also my recovery time was so long which I attributed to my lack of fitness and Amiodarone that I took for three months after ablation. Do you know is it absolutely necessary to have Amiodarone after an ablation?

My last two ablations were five and six hour long under general anaesthetic so it’s not something to take lightly but my gut feeling is I wouldn’t be offered this expensive procedure if my EP didn’t think it would help.

Any advice welcome please to try and help me sort out my indecisiveness.

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ETFCfan
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60 Replies
pottypete1 profile image
pottypete1

I think you are right that your EP would not offer you another ablation unless he/she felt it was worth all the effort.

There is enough demand on our NHS without procedures being carried out unnecessarily.

I don’t think it is necessarily essential tobe prescribed Ameodarone after an ablation. I have had 7 ablations and have never been prescribed Ameodarone after any of them.

The rhythm medication of choice at my hospital (a centre of cardiology excellent) is Flecainide.

Pete

ETFCfan profile image
ETFCfan in reply to pottypete1

Thank you Pete, I will ask about Flecanide for after. Seven is a huge amount, hope you don’t have any more.

Buffafly profile image
Buffafly in reply to pottypete1

Pete, I'm not sure I agree with that. My understanding is that surgeons have a budget and carry out procedures at their discretion until the cash runs out, though they may have to fight for a bigger share if they want to carry out procedures that are less likely to succeed or are out of the usual parameters. I discovered this when I had a scoliosis correction at age 65. My surgeon was very keen on doing operations for spinal deformity/degeneration but the CCG was being difficult about awarding him the funds! If you watch as much medical TV as I do you'll see that doctors sometimes push the boundaries to develop their skill and knowledge. Also ideas about appropriate treatment change. It used to be common to perform operations intended to cure back pain but my spinal surgeon told me he no longer performed those very often as he had found the success rate was low and sometimes the operation made things worse, so he preferred spinal deformity correction because it always improved life for the patient. He's a well known surgeon so it's not because he's not good!

pottypete1 profile image
pottypete1 in reply to Buffafly

Very good analysis.

Maybe I just think the best of people but probably you are more right than I am.

It is hard for me to be critical as I have more recently been treated so well.

However supporting your argument it has not always been the case for me. Six years ago I felt totally abandoned.

It us do easy to look at things with rose tinted glasses when you have been treated well, but I am acutely aware of how things differ from hospital to hospital, county to county and country to country.

Pete

Gowers profile image
Gowers in reply to pottypete1

Wow! 7 ablations that is a lot. I am still not well after my 1st one + cardioversion (day after) 7 weeks ago but, waiting for another cardioversion & possibility of 2nd one next year if needed. Did you have ga or sedation?

pottypete1 profile image
pottypete1 in reply to Gowers

Yes it is a bit daunting isn't it.

Trouble is that for the majority 1st works that is why there are not 800,000 members of this forum.

What is often the case is that they need to revisit the heart after the first ablation and as long as they have the state of the art equipment then they should be able to make an improvement of your QOL. There is not a cure as such and sadly it can return. I am very much better now after suffering from AF for nearly 30 years.

Regarding GA or sedation the first 3 were sedation the last 4 GA. I much prefer GA particularly as I spent nearly 7 hours on the table last time.

Pete

Go with your gut. I’m facing a similar situation except I am having occasional episodes after my second ablation. My EP has said I should go for a third and agrees that I should us the waiting time to assess the situation. If I was in persistent, I would have no doubts, but that is a personal view and we are all different......good luck

ETFCfan profile image
ETFCfan in reply to

Thank you FlapJack, think I’m erring towards having one. I’m not frightened about the procedure just the long time it took me to recover last time.

Gowers profile image
Gowers in reply to ETFCfan

I am finding the recovery difficult - I think the medications work on different parts of the heart & I feel like they are almost competing with another. Now taking 3 tablets - Flecanaide Diltiazam & last friday Digoxin added on. My cardiologist said Flec is the one they use the most along with Bisoporol but, I felt unwell on Bisoporol (heavy sensation in chest area & lot ectopics) so they put me on 1.25 x 2 a day but still felt the same. Don't think I could cope with your dosage. This af & medication problems is not easy to cope with. Will be interesting to hear about your decision/recovery. My ablation/cardioversion day after was 7 weeks ago

Jose1 profile image
Jose1

I have had 2 ablutions, the first was in 2016 and the second one this past March. The first one lasted about 4 months before I had an afib episode. I have had 2 very short episodes this time (5-10 seconds each) and some pvcs here and there. If I was told I needed a third one and I was in relatively good health I would do it. You and all those who suffer from AFIB are in my prayers

ETFCfan profile image
ETFCfan in reply to Jose1

Thank you Jose for your kind words, your words about being in good health actually have reminded me that I’m not getting any younger and perhaps I should take the opportunity now while it’s offered. Good luck to you.

Buffafly profile image
Buffafly

I think I would get a second opinion. As I understand it, the chances of an ablation being successful are very much lower if you are in permanent AF. I wonder why you have not had a cardioversion this time - 10 months seems a long time to be in AF with no intervention? Then there is the question of the Amiodarone.....In your shoes I would be thinking about pace and ablate because saying you are suitable for an ablation is not the same as saying a successful ablation! Naturally an EP is going to think his favoured method of 'fixing AF' is the best but I sometimes wonder if it is in the same league as 'getting Brexit done', ie just an ongoing process. I wouldn't want to do nothing but I'd want to be absolutely certain that the third ablation would be successful and final. Sorry if that seems negative but I thought the suggestion of a third option might be helpful 💜

Also see my reply to Pete 🙁

ETFCfan profile image
ETFCfan in reply to Buffafly

Thanks for your reply, my cardioversions only lasted a few days and a few weeks, he didn’t think it worth a try. My EP was unhappy that my GP hadn’t referred me back to him when I went with palpitations last year.I only have annual cardiology checks at the local hospital and it was they who referred me back to him when I saw them in September. I will ask about pace and ablate when I go back to see the EP. I do get the feeling that he sees it as an ongoing process and at the moment I’m fit enough to keep going.

CDreamer profile image
CDreamer in reply to ETFCfan

After drug therapy + 2 ablations - 2nd lasted 3 years - I opted for pace and ablate rather than 3rd ablation. No denying - there were problems both administrative and with competence on the insertion of the type of Pacemaker I had but since the Pacemaker was revised in June I have been so much better that I haven’t gone through with the AV ablation yet, being held as fallback position! I went for P&A because I can’t take any of the drugs and sedation or GA is a big problem for me and my doctors so PM can be inserted under a local with intravenous Paracetamol.

If appropriate, it’s worth consideration.

ETFCfan profile image
ETFCfan in reply to CDreamer

Thank you that’s another option to think about.

higgy52 profile image
higgy52

i was in permanent A F, had 3 cardiovertions, 2 Ablations and still in A F and still on Amiodarone, But had to come off Amiodarone as it damaged my Thyroid,

Was put on 20 mil of Sotalol and had a 3rd Ablation 9 months ago and it worked still in NSR.

So i would go for the 3rd,

Good luck, let us know how you get on if you go for it

ETFCfan profile image
ETFCfan in reply to higgy52

Thanks so much for that, so pleased to hear such a positive story. I hope that you carry on in NSR. I’m nit seeing my EP until Feb as he wants me to see how I get on with a higher dose drug and have time to think. I will post again though. Thanks agin.

Cristatus profile image
Cristatus

Hi I have had 4 cardio versions, none lasted more than a few hours. I have had 2 ablations the second about 4 years ago. I still take 3 doses of flecanide a day and if I ever forget one the AF returns within a few hours, this is very infrequent of course as I rarely forget but it is clear that AF remains a risk without the medication but the ablations have clearly done enough to allow the drugs to control what remains. I also take Bisoprolol. I have never had the medication you mention. I use a Withings watch with an ECG function and as soon as I feel unwell I take an ECG this provides a lot of comfort in understanding what is going on both in and out of AF. My surgeon at Papworth has said he may recommend me having a 3rd ablation at some point if the drugs stop being completely effective or he feels the mapping techniques they use to identify the target areas improve sufficiently - I will have no hesitation taking his advice. Between my first and second ablation I did have a second opinion from a surgeon who uses the cryo procedure as an alternative and he said he thought that ablation was more appropriate for me. If I were you I would have the 3rd ablation. In terms of the recovery. I was also surprised how long it took to recover from my ablation but my surgeon said you need to think about an ablation as major heart surgery just without the added very serious open chest surgery so the recovery is longer than most people expect.

Cristatus profile image
Cristatus in reply to Cristatus

Meant to include my Bisoprolol dose is 5mg and Flecanide is 50mg 3 times a day. I do think losing some weight and improving my fitness has helped me as well.

ETFCfan profile image
ETFCfan in reply to Cristatus

Thank you so much, sorry it took you so long to recover too but it’s reassuring to know it wasn’t just me being feeble! My EP did say that techniques had improved since my last ablation.

Gowers profile image
Gowers in reply to Cristatus

Interesting reading your post - what dose Flec you on & how do you space them out please? I had awful nauseau on 100x2 a day so they halved my dose & told I can take 3 if needed, My cardiologist also said ablation was major surgery - I questioned it as I thought it was more of a "procedure" As it can be done under sedation.

Cristatus profile image
Cristatus in reply to Gowers

I take one when I get up about 07.00 one at 12.00-13.00 and one at 21.00-22.00. My cardiologist explained flecanide only last about 12 - 13 hours in your system so he always recommends 3 over 2 tablets to get a good overlap in effectiveness. My dose is quite low and means if I ever feel an AF episode I can just take the next tablet early and that usually brings it in control within an hour or so. It is now a rare event for me to have an episode of A,

Gowers profile image
Gowers in reply to Cristatus

Thank you - is that 100mg dose you are on? My af nurse & cardiologist went through medication with me last week but, so much being discussed don't think I took itcall in! It's the sort of timing I have been doing but, good to have your info

Cristatus profile image
Cristatus in reply to Gowers

No I take a 50mg tablet 3 times a day. Which my cardiologist says is a low dose.

Gowers profile image
Gowers in reply to Cristatus

I am now on 50mg twice a day or three times a day if needed. It's better than being on a higher dose as you can space out & take the third extra if needed

Buffafly profile image
Buffafly in reply to Cristatus

Wow, the first EP I have heard of giving a realistic assessment of recovery from ablation 😮 !

cuore profile image
cuore

I have had three ablations, and am now in sinus rhythm, 6 months after my third.

I was placed on Amiodarone both after the first and second ablation. After the second ablation , I did ask for another drug since I was having too many side effects with Amiodarone so I was put on Flecanide.

When I went into persistent AF after my second ablation, my EP said, " Let me know when you are ready for the third," "you are too young ( at 76) for pace and ablate, " and "we know that drugs will hardly fix the problem."

For six months now I have felt great being in sinus rhythm. Also, I paid for all three ablations, and glad to have done so.

ETFCfan profile image
ETFCfan in reply to cuore

That’s interesting as I’m nearly 70 so maybe to young for pace and ablate. I will try and mention Flecanide. Hope you stay in sinus, thanks for answering.

Melbuckton profile image
Melbuckton in reply to cuore

Are you able to give a ballpark figure for the ablations? I have just been diagnosed with af and am considering a cardioversion privately. If several of these fail I'll be on to ablations.

Hence my interest.

Mel

ETFCfan profile image
ETFCfan in reply to Melbuckton

No sorry, I’m lucky enough to live fairly near to and been referred to St Barts Heart Centre in London so free for me on the NHS. Someone else may be able to help though.

Melbuckton profile image
Melbuckton in reply to ETFCfan

I live near Bart's. Thought was huge waiting list#

ETFCfan profile image
ETFCfan in reply to Melbuckton

I’ve been told four months as I need a GA

Gowers profile image
Gowers in reply to Melbuckton

Prices vary but I think ablation is approx (uk) £8-9,000 If you have a cardiologist in mind you could look up his info on line & see if he does private consultations or, call your nearest private hospital for a price.

My cardiologist wouldn't do ablation in private hospital as in my area they don't have the backup as in NHS.

Melbuckton profile image
Melbuckton in reply to Gowers

Thanks. I'll have to see what the NHS waiting lists are. It's a lot of money for an operation that doesn't seem to be very successful!

Mel

Gowers profile image
Gowers in reply to Melbuckton

Waiting list (birmingham) in Sept was approx 2-3 months. Yes, it is a lot of ££'s but could be cheaper if in different area

Melbuckton profile image
Melbuckton in reply to Gowers

I live on edge of London!

However have no wife or family and am 73 so will pay until I'm told it's all been unsuccessful!

cuore profile image
cuore in reply to Melbuckton

All three ablations were performed in Bordeaux, France. The cost of the third ablation was 16,575.16 Euros which, I believe, is similar to one in the United Kingdom. The first and the second ablation were around the same price. For me, they were worth every penny to be back in sinus rhythm.

Spiritji profile image
Spiritji

I am also in permanent afib.... I take Diltiazen prescribed for rate not rhythm and pradaxa. I was told there is no point to have an ablation as the success rate is so low.

I can walk without being out of breathe and can swim laps...... it sometimes sounds to

me it is the drugs people are on that is more the problem than the a-fib.

I also take Hawthorne.....I am 68 and most of the time I don’t remember I have it.....I don’t have episodes as always have it apparently.

Maybe follow your intuition and see what other drugs are possible.....

Good luck

ETFCfan profile image
ETFCfan in reply to Spiritji

Thank you, must admit for me it’s the fact that I can’t now swim or take stairs easily that’s leaning me towards another ablation but I did discuss just accepting the condition with the EP.

Melbuckton profile image
Melbuckton in reply to ETFCfan

I'm interested in your comment about stairs. Are you saying that if weren't in af you could climb a flight?

And that perhaps initially when first in af you could?

Mel

ETFCfan profile image
ETFCfan in reply to Melbuckton

Yes I was a reasonably fit 65 year old when I first went into AFIB. Didn’t even think about climbing stairs and I swam regularly. Gradually while on holiday noticed I could swim less and less and was diagnosed when I got home. After my second ablation was able to climb stairs again until I went into AFIB again.

Melbuckton profile image
Melbuckton in reply to ETFCfan

Oh. My flat is up two flights of stairs.

Can you get up them slowly?

ETFCfan profile image
ETFCfan in reply to Melbuckton

Yes with a few stops and deep breaths but a struggle.

Johnboy64 profile image
Johnboy64

Some really interesting comments there. I’ve had one cardioversion and two ablations. The last one only lasted about 6 weeks unfortunately. I’m only on Apixaban; haven’t been offered or asked for anything else so will investigate that further. I do wonder if I’d had been taking something whether that would have helped on the day my heart went wild after the op. Waiting to see EP and hoping he’ll agree to another ablation. The difference a successful ablation makes to how one feels is amazing.

ETFCfan profile image
ETFCfan in reply to Johnboy64

You’re right about the difference, the day I woke up after my second one failed I just knew and felt so disappointed. I was told that the Amiodarone helps keep it in rhythm after an ablation and took it for three months. Good luck with your appointment.

Johnboy64 profile image
Johnboy64 in reply to ETFCfan

Thanks for info re Amiodarone. Hope all goes well

I've had 2 Ablations the 2nd one lasted only 10 days, as a result my heart rate soared to 150+ with the same symptoms you describe. My consultant has stabilised heart rate with Bisoprol10mg and Digoxin but still in AF I have the option of a 3rd Ablation but I'm being advised my heart is now scarred as a result of the laser activity, you may wish to query this?

ETFCfan profile image
ETFCfan in reply to

Thank you that is something to bear in mind. I understand there would be scarring due to the ablations but hoping that it’s not too bad for another one. Will add this to my list of questions.

Hi, the 10mg of Bisoprolol is a pretty hefty dose, and I could barely function when I was on that level and a complete zombie on 12.5mg/day.

However, AF is progressive so if I was in your situation I would be grabbing that ablation asap.

As for Amiodorone, I took it for 6 or 7 months following my first cardioversion, it damaged my thyroid as well as some other nasty side effects. I did not take it after my ablation 2.5 years ago.

I know that I prefer to be drug free, and for now my ablation has ensured that has happened

ETFCfan profile image
ETFCfan in reply to

Thank you so much, you’ve confirmed my thoughts about Amiodarone. I do feel drugged up to my eyes and it would be great to be on less drugs.

Hi as you are on your 3rd ablation I would ask if there is any chance of being considered for the AcQ Map trial which I think is targeted at the more complex persistent cases.

Andy

ETFCfan profile image
ETFCfan in reply to

Thanks Andy, I’ve heard of it and am under Barts which I don’t know if they use it but I will ask. Anything that improves the chances is worth a shot.

ridgetile profile image
ridgetile

Been in persistent AF since February 2018. Had 2 cardio versions. One lasted 3 days, the other 5 days. Had first Cryo Ablation with sedation 26 September 2019, didn’t put me in NSR at all. Tbf, consultant said would probably need a follow up CV for that to happen. That booked for 16 December so everything crossed for a NSR Xmas and New Year. Only on Rivaroxaban, binned the Bisopropol, made me so lethargic. I keep myself in shape so recovery has been quite ok. Back to small runs and swims. Lots of dog walking. Can play golf again. If the CV doesn’t work would have no hesitation another ablation. Interestingly the consultant said I would be prime for a hybrid ablation. That would be more onerous but much better success rate. Good luck to all sufferers with their decisions.

ETFCfan profile image
ETFCfan in reply to ridgetile

Thanks so much for replying. I hope things work out for you.

Alessa69 profile image
Alessa69

It’s really horrible feeling so rubbish and out of breath on exertion.....I hope that you get the answers that you need. I was only diagnosed last year after planned ablation for SVT showed up AF issues, I felt fantastic for 4 months after Cardioversion, and was just so relieved to finally get correct diagnosis..

Just an idea, are you able to swim or exercise in water at all ? Its a lifesaver for me , helps so much to boost my circulation & improve fitness levels.

ETFCfan profile image
ETFCfan in reply to Alessa69

Thanks Alessa, I did swim regularly before I was first diagnosed n 2015. Suddenly couldn’t do what I’d done before. At the moment just to get to the pool would stretch me to my limits but if I do have the ablation I would like to return to swimming . Agree it’s such a good exercise.

If you can, give this a try:

------------------------------

After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer (this is why all doctors agree that afib gets worse as you get older). If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt?? I also found that strenuous exercise does no good – perhaps you make yourself dehydrated??

I'm pretty sure that Afib is caused by a gland(s) - like the Pancreas - or an organ that, in our old age, is not working well anymore and excess sugar or dehydration is causing them to send mixed signals to the heart - for example telling the heart to beat fast and slow at the same time - which causes it to skip beats, etc. I can't prove that (and neither can my doctors), but I have a very strong suspicion that that is the root cause of our Afib problems. I am working on this with a Nutritionist and hope to get some definitive proof in a few months.

Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer

PS – there is a study backing up this data you can view at:

https//cardiab.biomedcentral.com/a...

And Oh - if you find that your sugar threshold is lower than 50 grams a day - and it's nearly impossible to eat less than that each day, which will keep you in permanent Afib. If this is the case, try going to a Nutrition Response Tester. I am doing this and she has increased my sugar threshold from 48 grams a day to about 75, which is high enough to stay under - and keep afib from happening (unless I indulge in a sweet something). Hope this helps.

ETFCfan profile image
ETFCfan

Thanks very much, I do try to keep sugar to a bare minimum as I am pre diabetic. An interesting theory though as I know I feel so bad if even a little dehydrated.

MissDheartbeat profile image
MissDheartbeat

Wow! So much info, I was interested as I had 1st ablation in July. I'm only 42 and have been diagnosed since I was 39 originally with paroxysmal Afib but before ablation, since last year, I'm now in persistent AF. My ablation didn't work, as monitor in September showed.

To boot I have LOW BP (90/60) and high heart rate (approx 140) despite being on 7.5mg of bisoprodol and just recently meds changed to Amiodarone to help with HR. (was on 167mg Degoxin from January-October / and flecanide before THAT!)

Consultant has booked me in for cardioversion BUT on the day I go, if I'm in sinus rhythm then cardioversion won't need to be done, and also planning to do 2nd ablation in new year. I'm happy with my treatment and EP consultant is well renowned at NHS hospital. I've been told I'm too young to suffer from it and they don't want a life on drugs, IF they can make it calm down... Fingers crossed. Hope yours works out too, I'm hoping I won't need a 3rd ablation!

ETFCfan profile image
ETFCfan in reply to MissDheartbeat

Thank you for your good wishes. I do hope they can help you as you say you are very young. Good luck and thanks for replying.

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