To ablate or not to ablate ...... - Atrial Fibrillati...

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To ablate or not to ablate ......

gingo2012 profile image
40 Replies

Hi all ,

New to this forum. I have paroxysmal AF for last 8 yrs & it's getting more frequent.

Went to see my EP at Spire Leicester and he has suggested ablation.

Any advice - I am petrified .

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gingo2012 profile image
gingo2012
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40 Replies
rosyG profile image
rosyG

Hi

Lots of people who have had ablation will advise- I would just say you may want to base your decision on how badly you are affected by your AF....

dmac4646 profile image
dmac4646 in reply to rosyG

This is the key issue if you are badly affected by AD and have tried all the lifestyle changes, reasonable drug alternatives and still get floored by AF the ablation choice seems a lot clearer - its then all about who does the procedure , how many they do etc etc .

dmac4646 profile image
dmac4646 in reply to dmac4646

AF ..not AD !

UScore profile image
UScore

How old are you? What medication do you currently take? A lot of people go for ablation when PAF starts interfering too much with their daily lives.

I'm 41, have quite infrequent PAF, and take no medication daily. I take Flecainide when AF visits. My AF burden is quite low.

I am having an ablation next Tuesday. I hope that early intervention will stop the condition before it progresses.

li17 profile image
li17 in reply to UScore

How often are your episodes?

UScore profile image
UScore in reply to li17

Me? last one was 2 months ago. Time before that, was about 2 months too.

li17 profile image
li17 in reply to UScore

How many episodes have you had? I’m just want to see how soon people would head for ablation. Thanks.

UScore profile image
UScore in reply to li17

7.

gingo2012 profile image
gingo2012 in reply to UScore

I have had AF for last 8 years.

Initially I got episodes every month and they resolved of their own accord. Lately I get AF episodes every week for 2 days. Apart from irregular heartbeat I don’t have any other symptoms. Since episodes are more frequent I decided the time has come for ablation .My EP suggested ablation a year ago but I wanted time to research & make sure I am not rushing into it .

I’m going to bite the bullet & go for it this time.

UScore profile image
UScore in reply to gingo2012

At first I thought I would wait until episodes got more frequent. Why take a risk now, I thought? Wait until it becomes worth doing.

I changed my mind for 2 reasons:

1) I hated having it hanging over me, this inevitably of ablation. I just wanted to get on with it, hopefully get it out of the way.

2) there appears to be some evidence to show that the earlier the intervention, the better the chance of success.

cuore profile image
cuore in reply to UScore

What a wonderful story, UScore. You and your medical team are doing everything right, in my opinion. You weren't slammed immediately with 25 mg metropolol (a beta blocker) like I was by my GP when I was diagnosed with atrial flutter, not AF. (Metropolol made my condition worse.) You were prescribed a pill in the pocket technique.

My GP allowed my condition to progress to persistent AF before he referred me to a cardiologist, not even an EP, which added more months of waiting causing the persistent condition to progress even further. Lest the system promote me to permanent AF, I went to Bordeaux, France where the first ablation for AF was very long as I had four rotor areas beyond the pulmonary veins, and the second ablation for perimitral atrial flutter was only one hour, but I am just short of the three month blanking period and have had lots or recurrences. Plus I have had to take amiodarone post ablations to hopefully get my system back to NRS. You are getting an ablation after only SEVEN episodes -- remarkable.

If only GP's and cardiologists could take lessons from your case, an incredible number of arrhythmia patients would be in a far better and healthier place.

Good luck on your ablation, I am so happy for you.

UScore profile image
UScore in reply to cuore

Yeah, there's been a mixture of good luck, great Doctors, and my own research along the way. I was lucky that one of my first episodes was caught on ECG when I went to A&E; I self-cardioverted about 10 minutes after it so just in time.

I fortunately found this website/forum quite early on, which was a massive help because I went to the GP armed with a bit of knowledge. The GP wasn't that knowledgeable about AF, but they gave me a referral to cardiology - which I used to get a private appointment with an EP - who then took me on as an NHS patient.

I was surprised they offered the ablation - all I was after was the PiP Flecainide. I agreed to go on the waiting list and used that time to research and decide whether it was what I wanted to do.

I don't know if a younger age has helped me, in a weird way, being 39 when I first went to the hospital - maybe it was taken more seriously than for someone of more advanced years?

I've found it odd how serious and pro-active all the various Drs, cardiologists, and nurses have been, compared to some of the stories I've read on this forum. I've never felt fobbed off, or received the wrong treatment; for example they've all known about vagal AF and said that betablockers alone would be the wrong thing for me.

I definitely recommend the Bristol Heart Institute to anyone considering developing a heart condition.

I hope your situation settles down by the end of the blanking period. I've read some of your previous posts and you deserve some good fortune.

gingo2012 profile image
gingo2012 in reply to UScore

Hi there , how did your ablation go ?

UScore profile image
UScore in reply to gingo2012

it got postponed - til tomorrow! I'm currently stuffing my face with food and drink before my food/drink curfew!

gingo2012 profile image
gingo2012 in reply to UScore

Good luck 😎

wishing it goes well. 🏆

gingo2012 profile image
gingo2012 in reply to UScore

Please let us know how you get on.

BTW where are you having it done?

I've got my date at Leicester in 2 weeks time 🙏

CDreamer profile image
CDreamer

Hi Gingo and welcome - I have had 2 ablations - if you have been offered one I would take it as there is a very long waiting list in many places.

It actually sounds far worse than it is as far as the experience is concerned and I was more fascinated than scared - the cath lab is more like the set of Star Trek! Both were performed under sedation but I was asleep for much of the time. Go to the AFA website and learn as much as you can about it and ask any specific questions here. It is an overnight stay usually and you have to take it easy for a while but the relief from the AF is well worth it.

If you can pinpoint what scares you and look at what that is about you for you it will help.

You will find many, many threads about ablation experiences on this forum and 90% are very, very positive.

pottypete1 profile image
pottypete1

If your PAF is affecting your quality of life I suggest you accept the offer of the ablation.

I can understand your concern it is only natural.

However as a veteran of 7 ablations I can tell you that the thought of it is far worse than the actual procedure.

I am a very difficult case but I am by no means the rule I am the exception. Most ablation procedures are successful first time and those patients don’t hang around forums like ours for long.

Pete

cuore profile image
cuore in reply to pottypete1

Hi Pottypete 1, you have always given very helpful, positive advice. May I add that a one time ablation procedure being successful generally occurs for paroxysmal patients whereby only the pulmonary veins are ablated. (of course, you know this). As most ablations are for paroxysmal, then this first ablation has a high rate of success. Once the condition is persistent, two or more ablations are generally required.

As you have had seven and have graciously written about them, we have been encouraged by your case. Perhaps there are more persistent AF patients in this forum rather than paroxysmal which may be the reason why these patients don't "hang around."

pottypete1 profile image
pottypete1 in reply to cuore

Hello cuore

Thanks for the reply.

I am sure you are right and of course many who have a first time success do not necessarily seek out support from our forum.

For me my EP found there had been some reconnections hence the multiple ablations. In addition they did lines of radio frequency burning at the back and on the roof of my left atrium.

The last ablation was for the Atrial Tachycardia that had developed following the 6th ablation for AF.

I had AF since 1991 and I have now been free of any major rhythm problems since August and AF free since April 2017. So it seems it was worth the persistence. A wonderful EP.

Unfortunately just before Christmas I was diagnosed with a hernia. It took until yesterday to see a Consultant at a specialist Hernia Centre where he told me that as I have these heart and allergy conditions I will have tobbe referred to the main hospital where I had all the work done on my heart for the repair surgery to be done.

This means a longer wait for surgery and so I have swapped one QOL health issue for another.

Such is life and getting old.

Thanks for your kind words.

Pete

People who have not had an ablation tend to feel it is more scary than do people who have had the procedure - and go for back again for more.

perkman profile image
perkman

My afib went 6 months between episodes then it started happening every 2-3 weeks then almost every week when I opted for ablation in July. After 2.5 months post ablation my afib stopped and I have been afib free for 4 months.

I would do it again if needed. You have a greater chance of success with your type of afib.

The procedure itself for me was event free. The worst part was waiting for the catheter entry points to heal so I could start walking. Well worth it!!

cuore profile image
cuore in reply to perkman

What wonderful advice, Perkman, and you caught the AF before it went into persistent as it was being fast-tracked when you were getting it almost every week. You don't state how long the episodes were, but one article I read presented that when the episodes were as frequent as yours, then the patient will go into persistent within one year. Bravo for you and may you continue in sinus rhythm.

perkman profile image
perkman in reply to cuore

The episodes usually lasted around17 hours. I never went longer than that.

Thank You

Best Wishes

cuore profile image
cuore in reply to perkman

I recall the article saying that the duration had to be longer than yours -- 2 or 3 days of continuous AF, I think. I don't have the article handy or I would quote it. Very good that the duration of your episodes were much shorter.

val757 profile image
val757

Hi gingo2012

I had ablation under general anaesthetic just over a year ago. Although my AF episodes before the ablation were infrequent they were very symptomatic, completely flooring me, and I’ve been taken to hospital twice by ambulance with heart rate well over 200. Medication either didn’t help or caused side effects and I was offered ablation. I was very nervous, and the risks that the doctors have to inform you about when getting consent didn’t help, but I agreed as it seemed the only option to get my life back on track.

Since the ablation a year ago I’ve been completely free of AF although I did have some ectopics in the early weeks. I’ve made changes to my lifestyle as well, which I’m sure have helped, but the ablation has given me my life back. It was much easier than I expected, with the exception of suffering nausea for a couple of days after the procedure as a result of the general anaesthetic (something that always happens with me). I would do it again without hesitation if needed.

Harrybin profile image
Harrybin

hi gingo

i am 80 and like you have had paroxysmal af for 8 years.

just recently it has become permanent.

after finding this forum i followed some of the advice and now without

any other treatment except my usual medication i.e. bisoprolol amplodipne and blood thinner apixaban 2.5x2 if find the AF is almost non existent.

The advice I followed was this......plenty of water, Magnesiun Citrate (Natures own) and a tablespoon of Exra virgin Olive oil Morning and evening.

Also f you feel it coming on,relax,breath deeply and also prayer helps.

Its worth a try before you do anything else...this has worked for me hope you find it useful and it works for you.....God bless....Mike

Mike11 profile image
Mike11

Just go for it - it will improve your life in 99.9% of cases even if it's not completely successful and a follow up op is required.

Beta44 profile image
Beta44

I was in exactly the same situation. Paroxysmal AF getting worse and affecting my life to a greater extent. I had a cryoablation 2.5 years ago. Now no medications and a new life without any AF. I was scared stiff but the procedure was not nearly as bad as I had imagined.

Peter

jondeanp profile image
jondeanp

I’ve just last week had an ablation for Atrial Flutter (although AF has been also diagnosed previously)

I too had a difficult time over the decision to ablate or not

I’ve just turned 49, my AFlutter was persistent but presented very few symptoms to affect my quality of life

I was on the ablation waiting list in Coventry for over 12 months and during that time had 3 chats with the EP and arrhythmia nurses about my decision. I thought why put myself through an invasive procedure when I don’t feel that bad. I actually wasn’t overly worried about the operation but more so the outcome. I didn’t want to come out feeling worse than when I went in

As it got closer I resigned myself to listening to the professionals and also to a certain extent inputs on this forum and went ahead with the ablation. Main considerations were the confidence in and success rate of the flutter ablation and the ability to get away from the stroke risk and off the meds

I know there are subtle differences between the flutter and fibrillation ablation but my experience was very positive. I felt fine immediately afterwards and I am having to force myself to take things easy for a short period post operation.

At least get yourself on the waiting list while you weigh up your decision

Lofty77 profile image
Lofty77

What are you terrified about ,I have had two second one a year ago touch wood ,no AF.i don't think you have any thing to worry about after they put that needle in your arm you don't know anything until you on the recovery ward.Think of it this way it could be worse like having your leg off.You go for it best wishes.

bushy2016 profile image
bushy2016

Hi Gingo..Ive had 3 ablations in 12 months...Im a difficult case, I wouldnt worry about the procedure, having a dental filling is more painfull to me

JJHRT profile image
JJHRT

Absolutely ablate. The longer you wait the less chance of success. The procedure is a breeze.

Sam72- profile image
Sam72-

Hi there , I am only going by my own experience here and can not speak on everyone else. I had my 1st PAF attack in November 2016 . I got a fast one and felt it , I was told by my cardiologist at the time and a dr in ANE to get my ablation as soon as possible. I seen the ep in the January and ablation was done August 2017 . It is my understanding the outcome for a successful ablation procedure is to get it before it becomes permanent. I was petrified like you but if like me you are going to have it done at Glenfeild then believe me when I tell you they will do everything to stop it . I went in knowing I had only had PAF once and always thought I had more to it than that episode, while looking for the AF they found 2 more problems, SVT and PV tac . They froze and burned on the same day and although it was uncomfortable when I woke up it was worth it because I might not have ever known about the other 2 things. AF will only become worse over time so I would say do it . It’s not a guaranteed cure but can change your quality of life and who noes it may rid you of your AF for good 👍🏼

Be brave and I hope you find some good feedback on here to help you make your decision.

Best wishes

Sam 💖

cuore profile image
cuore in reply to Sam72-

Sam, your advice is spot on. Also, you were so fortunate to get a cardiologist and a doctor to both advise you to get an ablation as soon as possible which occurred nine months later and seven months from seeing an EP.

My first attack was on February 3, 2016, kept by my GP for a full year who let the condition get to persistent before referring me to a cardiologist . The cardiologist I was sent to wasn't any better (March, 2017) as he was keeping me dangling if I hadn't pushed for an EP. The EP appointment, June 2017, would have been August 19, 2017 without my complaining to the manager of the cardiology department about my worsening condition. From the EP appointment, the ablation would have taken from three to six months and beyond guaranteeing me to get to long-standing persistent.

I got fed up with the British Columbia Canadian system, went to Bordeaux, France, at my own expense, for two ablations, the first on July 3rd, one month after seeing the Canadian EP. If my condition had been attended to early like yours, the damage to my heart would certainly not have been so severe. Keep up your good advice.

Sam72- profile image
Sam72- in reply to cuore

O so sorry to hear about you being messed about , I no only to well about that . Through other problems with drs to . My first cardiologist was very good but had a terrible bedside manner and I really didn’t like her attitude, however she sent me to my EP strait away . She then left and my second cardiologist wanted to see me in af more like every week before he wanted to go through with the EP 😳 I said no I want to see the EP . He then said he would be very surprised if they offered me an ablation that soon , but when I seen the EP they offered me it soon as possible as they said the total opposite to my cardiologist . They said we need to do it sooner rather then later as it’s only going to get worse and can remodel the atrium so it’s harder to rid of . I was petrified about it but glad I done it , I still get fluttering but up to now nothing like what I had before, it’s 5 months post procedure now going into 6 months and if I need to go in and have as they call it a top up ! I will do it again. And thank you 😊

cuore profile image
cuore in reply to Sam72-

I have come to the conclusion that GP's should not be allowed to handle arrhythmia patients, and cardiologists be banned from handling arrhythmia patients if they don't immediately refer to an EP. Your " my second cardiologist wanted to see me in af more like every week before he wanted to go through with the EP " I would deem most unconscionable as he was promoting your AF episodes, a similar situation to mine where the cardiologist was comfortable in letting my persistent AF get worse.

Sam72- profile image
Sam72- in reply to cuore

My doctor the other day asked me ? WHAT IS A EP 😮🤦🏼‍♀️😩😭 I just sat there like !!! OMG !! And people take a GPS word as gospel?? I tell you now , most read out of a book like google your symptoms. It’s disgusting 👎🏼

Spoiler profile image
Spoiler

I totally understand the difficult decision, I backed out twice on ablation, thinking I could do more to control it. I told my EP that I was terrified to have one. First off, mine is difficult, meaning I require a cardio version (persistent)when I go into it. It is very debilitating for me. I finally resolved to have one after getting a second opinion at the number # heart center in the US. Cleveland Clinic. I knew if I had complications and the best possible success rate, they would be able to handle it better than anyone. Well, I did have complications, cardiac tamponade (bleeding) and they were only able to ablate the two left pulmonary veins and 1/3 of the right one, so a little over halfway and the surgery was stopped. I ended up in ICU, but they handled it all great and I felt secure because of the high volume center I chose and the ratings they have. It was a gamble, but I chose a place with the best odds for me. I have had a rocky road with all the efforts to control it, I have had 11 cardioversions and a cardiac arrest to Tikosyn. All in all I should have done ablation sooner, they found extensive scarring in the atrium, so I do not know if I am even a candidate for another ablation to finish. My goal was to be off drugs, that is not happening at this point. I will never know how long it took to cause the scarring, but I have been told that is a negative for me. I would research the best high volume center, feel confident and not wait too long unless you have conflicting health issues other than afib. So many people have really high success rates, especially if you have no other abnormalities of the heart. Best of the best to you, so many on here understand the burden of deciding.

gingo2012 profile image
gingo2012

Thank you so much from the bottom of my fibrillating heart lol.

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