Ablation date available...arggh: I knew this... - AF Association

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Ablation date available...arggh

Hambo444
Hambo444

I knew this time would come but I thought I would have had another 5-7 months before having to face an ablation..but I now have a date.

I still question whether it's the way to go. I feel you don't really get the time with doctors to talk through all options etc so they really look at your individual case.

I had an episode of af when I was 25 that was reverted with flecanide. No medication until got persistent af last year (20 years later). Cardioversion got SR back and been ok since (4-5 months) but on medication. Changed lifestyle (No alcohol, less stress, reduced strenuous exercise).

Feel tried, headaches, and get little sleep which can perhaps be blamed on medication but apart from that function ok.

I do wonder could I go off medication and last another 20 years like I did before the next run of persistent af. I mean they didn't bother with long term medication after my first episode at 25.

If yes then why do I need an ablation? If i have an ablation what are the chances I can come of the medication? If i cant then whats the point?

I understand the medication may be preventing it from going into af again..and it's prob more likely af will get worse..so that's where the ablation comes in (but maybe not without triggers, e.g. alcohol).

When I hear other stories of getting at runs lasting 12 hours or multiple times a week or month...I think now there is a candidate for an ablation. Perhaps not me.

No Crystal ball so its so hard to know what to do. Arghhh!

29 Replies
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BobD
BobDVolunteer

When the pupil is ready the teacher will come. (Ancient chinese proverb) Only you can decide but how bad would it be if you turned it down and AF hit wih a vengance.

Hambo444
Hambo444 in reply to BobD

Yes I think I know the answer..i just have to get me head around it..I such a wimp!!!!

BobD
BobDVolunteer in reply to Hambo444

I know all about it. After three ablations for AF and over ten years free I am now waiting for ablation for atrial tachycardia. I only tend to have an episode every couple of years but the last one nearly killed me so not difficult choice.

If you have not had any AF since starting regular medication then why not wait?

Did you have much of an AF burden in the 20 years before developing persistent AF? Are you very symptomatic during episodes?

Do you have a family history of AF? How much heavy exercise are you doing now? Is your echocardiogram normal.

What medication are you taking, rhythm control or rate control?

These questions are all relevant to your decision. That said, your EP presumably had good reason to recommend ablation. Since you obviously have doubts, why not talk to the arrhythmia nurse, ask for another appt with EP or get a second opinion?

Bear in mind if you turn down the date for ablation you risk going to the back of the queue.

Hambo444
Hambo444 in reply to oyster

10mg bisoprolol at start and have worked down to 2.5. Tried flecainide but terrible so stopped that. Apixiban 5mg x per day needed for procedure.

No real burden..just get little af runs up to 10 seconds every now and again.

For me I would like to get off medicine. For them the advice is it is likely to get worse (as has done cause I went into persistent) and at my age the early intervention the better.

Just walk now..cut down any strenuous exercise as felt like it could have been a trigger. No family history.

Had an echo when in af and function was reduced slightly..had another in SR and it was fine again.

oyster
oyster in reply to Hambo444

So you have not had a proper trial of medication to prevent episodes of AF. There are several alternatives which you might tolerate better.

I should have asked about left atrial size on the echo, which can be a factor in the decision.

In your position I would want to discuss this further with a specialist.

Hi Hambo

What date is your ablation and what medication are you taking? Having the inside of your heart burnt in order for scar tissue to form is not to be taken lightly. How long were you in persistent AF for?

Jean

Very soon! Persistent for 2 months.

HiddenThis reply has been deleted
Hambo444
Hambo444 in reply to Hidden

Yes

RexH
RexH in reply to jeanjeannie50

Totally agree, it took 6 month's after ablation before I could do anything. No out would scares plenty inside.

When you were in persistent AF did it make you feel dreadful? My sister had a few shortish AF attacks in her 40's. She refused to accept that anything was wrong and they just disappeared. She's now in her late 50's and AF free. I've had three ablations and numerous cardioversions and still get AF, but not as debilitating as it used to be.

Jean

I very much disliked being in persistent af. Felt awful. Having to take 10mg of bisoprolol just to keep hr under 100. Couldn't do much ..as an activity would spike my hr....and felt way more tired than now in SR.

That seems strange that your sisters went away. All being saying it's got worse and likely to get worse. But I feel the same as before persistent af arrived (except a bit more tired)....and I wonder if I remove drugs would I be back to where I was..or maybe better as no alcohol. But I really do not want to go back into af..but u just don't know.

But then again..I dont really exercise any more..don't drink..stopped working..feel tired...have I just got use to feeling a bit crap...maybe it's better the other side....????.

It's hard cause u just don't know..pluses and minuses for both sides of the coin

That's true there are pluses and minuses, it's certainly not easy to decide what to do. Have you ever worn a holter monitor for a week to see if your heart is doing anything now that you're not aware of? My first two ablations made my AF worse, the third helped a lot - well it was either that or my eating a lot more healthily. I no longer eat cakes or biscuits and try to have as little sugar as possible or anything with artificial additives. All my meals are made with fresh ingredients from scratch. Oh yes, I try not to wear tight clothing too. I've had no AF since I had a cardioversion in January, so have been totally free from it for two months.

Jean

Had 24 hour ones..only thing last time was it was slow so reduced bisoprolol.

I am thinking my main motivation would be to get off the medicine.

One of the most difficult questions asked on the forum and impossible to answer for reasons I’m sure you understand and appreciate. My decision to have an ablation (2) was based on a number of different factors. Even though older than you, I did not want to take AF medication for the rest of my life with the possible, if not probable likelihood that dosages were likely to increase over time. Then I looked at the numbers which I have to say were largely based on assumptions. Goodness knows how many EP’s there are practicing in this forums catchment area and by the same logic, its equally impossible to assess how many thousands of ablations are performed annually here in the U.K. let alone the States, Australasia and Europe. How often, if ever, do we hear from members saying they regret proceeding with their ablation and wished that they had left well alone. Also bear in mind, forums are generally populated by folks who have experienced problems or difficulties, whereas most of the successful patients get on with the rest of their lives. This may be an oversimplification for some, but it worked for me and even if my AF returned, I would have absolutely no regrets.....wish you well in making your decision.......

Hambo444
Hambo444 in reply to FlapJack

Are you off all af medication now? How long did that take after the ablation?

FlapJack
FlapJack in reply to Hambo444

Just over 6 months post last RF ablation and no AF until one short episode a month ago. Currently taking Diltiazem and Apixaban (which I would never stop). Review with EP next Monday and the plan was to stop Diltiazem then but recent episode may change that....☹️

I think the most important and serious aspect of having persistent Afib is the FACT that Afib remodels the heart. Do you know what that means? It means that it reshapes the critical structures in the heart, so they no longer function like when you were 25. Secondly, there is a measurement in the heart called Ejection Fraction. Look it up. The longer you stay in Afib, that measurement decreases. You should have an ablation as soon as you can. You should have had it ten years ago but through unnecessary caution or whatever, it's time to try it. Remember that a failed ablation is better than no ablation. I have had three ablations and my Ejection Fraction is getting lower... I think ablations have become very routine and have had zero side effects from them.

I am 6 weeks post ablation. It was the best decision I have ever made. Yes I was very scared, but so glad I had it done. I hope to be off all medications in 4 months. If you don’t get your Afib looked after, you can cause serious heart damage. Good luck!

It worked for me Abilation I was struggling so much I now take no medication love my fitness and living a far better life then before the procedure I

Hi Hambo

I had first AF mid 30s related to a post natal thyroid problem. Settled spontaneously and nothing til my 50s. Sometimes triggered by alcohol. I'd get 1-2 episodes a year. Very fast and couldn't be active/upright. Quite often started in the night so I think vagal AF. Anyway, I went to see a cardiologist after a couple of years I had an ECHIO and they talked about a pill in the pocket but I decided against. Carried on a couple more years of the same one or two a year. Then Jan last year started to get one or two a month. I could always come up with a trigger- white wine, dehydrated, busy day, etc But do you really want to be always having to monitor what you do everyday day? Stay calm, drink loads of water, no alcohol, reduce caffeine worry that every ectopic would flip me into AF. I did all of that and started Mg. Also went back to see cardiologist who started me on Flecainide (after a CT cardiac angio to check no coronary artery disease). He said the guidance is meds for a year then consider ablation. But in his opinion, as I have says in other posts, an ablation was a 'no brainer'. He also said looking at the recording I had that my heart 'wanted to be in SR', it kept trying to revert. So he put me WL at same time as starting meds. I was in fact offered ablation pretty soon afterwards and hadn't actually started Flec (delay in CT and comms with GP). So we delayed it. I've had no AF since Sept on the Flecainide and feel great but I'm still going for the ablation. They were happy to arrange a time that worked for me. Like you I wasn't quite ready and had been put off by some posts here. But then others posted how much it helped etc. It's been said here often we are all different. I do have concerns that I might be worse afterwards but I don't believe AF just goes. I hoped mine would but last year showed me it doesn't.

This probably doesn't really help with the choice you have to make. Except that it is worth ringing to see if you can be delayed a month or two so you can get your head around it. I'm a nurse and I do outpatient clinics and I know appt bookings can be flexible. Worth asking.

I'm booked in for March 28th btw.

😀 Amanda

Hi hambo, well like you on medication I’ve been fine.....there’s no yardstick to measure it......lots of what if’s, .by some people’s stories I got off light with the meds working after a few bad horrid bouts the first month last May 18, .......but I was offered here in France anablation as an alternative to meds and I took it......had ablation this Jan and see the cardio Friday amd think he will take me off meds........for me it’s been about getting off these meds, and the word “hope.”......the afib attacks are horrid I’ve tried to not forget how bad they made me feel and not wanting that again made ablation a quick “ yes please”response...... I’m working on the assumption it won’t come back and the ablation has given me that mindset, ........and now I know what it’s like, if it comes bavk, I’d hav e another one because, all the fretting beforehand I not know was the worse bit......the week before worrying about it disappears the moment you get into hospital and they take over.......trust me I was fretting big time...and I’d have another without a second thought......

It’s your decision though and I understand your fretting.....think we all did ....

Difficult one this ! As I would have another ablation tomorrow ! To stop my episodes. Only your cardiologist, I guess , can say what’s best ask for you ask for another app and just be direct with him or her ?

Relax its not that bad.

I've had 2 Ablations a year for the past 5 years 2 pacemakers since 2011, 3 Cardioversions......ask the Theatre staff to play music you like, it'll soon be over.

With modern day technology these procedures are getting so much better.

I'm on Apaxiban 5mg x2 Bisoprolol 5mg Entresto 97/103 x2 plus numerous other medication.....I've had AF for just on 15 years.

Unfortunately I've now got COPD {non-smoker}

so now looks like Heart, double lung transplant.

Chin up be confident we're all on your side.

Only you can make this decision.

I can only give you my own experience.

I was put on the waiting list for ablation after my first two AF attacks, eight months apart. I had a further attack many months later. One day whilst attending a funeral (afterwards, at the wake) I had a telephone call on my mobile saying come in tomorrow for pre-op for ablation the next day, with a new EP who is reducing your EP's long list. I thought about this for about 30 minutes and then rang back to say "no, thanks". I could not bring myself to put this into the hands of someone I had never met, and anyway, I felt I deal well with the occurrences and no longer fear them. I've given up dangerous pastimes (sailing solo without safety boat cover) and due to other constraints I rarely do any hill walking any more, and always in company at low levels. I can survive without an ablation, for now. I have had three further episodes, all associated with rich food, alcohol and celebrations (birthday, Christmas, New Year). I've now restricted my drinking to a single glass of wine, or beer, occasionally and with food.

As a result of refusing the unexpected offer, I was put to the back of the 18 month queue, and only for a further consultation, not for an ablation. I assume that if I agree then to an ablation, it will be a further 18 months wait (currently).

Obviously, the conditions and waiting lists will vary by region. I'm in Lancashire, and on the list at Blackpool Victoria.

I wish you well, whatever you decide.

Hi Hambo444, I understand your post so completely! The constant questioning and going over wether its best to leave well alone and live with it as you have done or take the next step and try to rid yourself of the awful thing once and for all.

When I’m not in AFib or any of the other lovely arrhythmias that my poor heart can descend into my brain minimises it all. It’s self preservation, in order for me to get on with my life my brain tells me that it’s gone away and if I just behave myself it might not come back. So I have spent 30 years dealing with the disappointment and stress this complete lie brings into my life.

The facts are this, I have AFib and SVT and more recently AFlutter. I have had arrhythmia problems since I was 17 but like you I have had long periods of just living my life and not feeling like they dominated it. But they have hounded me because no matter how many changes I made and no matter how well I behaved they still lurked there just waiting to spark off. This is the way my heart is wired up and no matter what I do I can’t change that physiology. Yes I can certainly look after myself both physically and mentally to try and protect myself but ultimately I can’t rewrite the fault. I have reluctantly relied on medication and it gave me some good years, it became my cure for a while, until I convinced myself that I was cured so stopped taking it and within 1 week was in a&e completely crushed again. I have never had total mental freedom from this hideous threat since the first time I felt my heart beat at 240bpm when I was 17. I have pretended to be free of it but I never have.

I have resisted, first medication and then suggestion of ablation like a true warrior, I have robbed myself of years of peace by trying to bargain with this b*****d

On the 1st March I decided to have an ablation after a 45 minute consultation with a person I’ve never met before. I’m exhausted from running from the beast, I’m taking control and facing this thing head on, I’m sick of being afraid, I’m sick of having this negative thread running through my life. I’m not searching for a cure I’m just willing to let someone look and see if they can do more than I have been able to do in the last 30 years.

I’m sorry this is such a long reply but what struck me about your post is how just like me you are bargaining with your body, hoping you can out smart this thing, behave better towards yourself or just find that as quick as it arrives it might leave. I don’t think it will. You have already jumped from one episode to persistent, I think that you are right to wonder if it will ultimately get worse. Statistically the odds are not in your favour. The question you really need to ask yourself is can I live a good life in the worst case scenario if permanent AFIb? I know what my answer would be.

I wish you all the very best with whatever you decide

I was in persistent AF and on 10 mg Bisoprolol which made me feel very tired and unable to walk for more than 15 mins.

After my succesful ablation last May I could immediately feel the difference and now have weened myself off Bisoprolol and conduct a normal life

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