Dithering!: Hi again all, I am on the list... - AF Association

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Dithering!

bassets profile image
bassets

Hi again all,

I am on the list for an ablation eventually, but I have elected o see my EP privately soon. I wonder if anyone can give me advice as to what to ask him? I am teetering on the fence, wondering whether to go ahead with this or not as so many others do? Thank you, and thanks for all the time a lot of people give to this forum.

Helen.

60 Replies
BobD profile image
BobDVolunteer

You need to ask yourself why you are dithering Helen. Are you worried about the risks of pocedure itself, one which many people find improves their quality of life enormously, or are you concerned that it is not going to work for you?

Do remember that although there are theoretical risks in everything we do, these seldom happen and in most cases we are told about them merely to prevent us taking legal action against the doctors or hospital concerned. There are risks in everything we do or not do which are far more common .

There have been a couple of people recently in your position who actually went into AF on the day of their procedure which they say reminded them why they were doing it and took away all doubt. For my part I was terrified that it might NOT go ahead so bad were my symptoms.

All that said though only you can decide but never look back and say "I wish! "

bassets profile image
bassets in reply to BobD

Thanks Bob. I suspect I'm nervous, and need reassurance, but I want to be able to ask pertinent questions about the ablation itself. I find it better to speak to people rather than just take things for granted. It's difficult to know if this is the right step to take.

Bawdy profile image
Bawdy in reply to BobD

I had no knowledge of ablation but after being in hospital for a few days waiting for my heart to show "something, anything" , my EP came around and said it was stupid to be languishing in hospital so lets do an ep study I think it was called, I said lets do it, so it was done and even though it wasn't totally successful, for me it's marvellous and I will have no hesitation in having another which he seems to think I may have to have down the track. I was 75 when I had it so two years later I still feel lucky. Now only taking xarelto. Good luck.

bassets profile image
bassets in reply to Bawdy

That's great! I would love to be off my calcium blocker and flec as they make me so weary. Thanks Bawdy.

Stop your dithering and get on with it......how’s that for a good bedside manner😉.

Of course it’s natural to be cautious and apprehensive, most of us were but as has been said many, many times, you rarely, if ever, hear anyone here say that they wished they hadn’t had their ablation.

It might help if I explain what happened in my case. When I joined my local support group, the medical lead was an eminent Cardiologist (not an EP) who always appeared to be cautious about ablations when talking to the group. During an appointment with him about a year after a CV, I was starting to get more frequent episodes which were generally well controlled using Flecainide. He knew that my knowledge about AF had improved so he asked me what I thought I should do. I replied, “to be honest, I don’t know”. He said that if he was me, he would have a Cryoablation. I did, followed by an RF ablation a couple of years later and if necessary, I would certainly have a third......

bassets profile image
bassets in reply to FlapJack

Thanks, Flapjack. It's good to know you'd do it again. My appointment with the EP is a private one as I haven't been able to actually talk to him - just through his team. My episodes are getting more frequent and my GP won't up my meds as my heartbeat is a naturally slow one, like lots of people on here.

I ask myself this too. When I get AF or Flutter it is does not last long and us not debilitating...99% of the time...Controlled by medication that I tolerate well ( after a few adjustments) and if I get an episode of particular strong effect I can take extra which stops it.

I do get some longer episodes but only perhaps once or twice a year.

I don't worry about the long-term use of meds,I'm already on BP med and statin for life.

I have had diagnosis since 2013.

So my dithering is this :

Is an ablation really warranted,might it possibly trigger other arrthymia ( which I've read on here several times)

My quality of life is decent at this time.

On the other hand,if I delay might the chances of success be so reduced that it's not worth doing?

It's also worth thinking that ablation is what EP specialises in. Like Bob once said,if you go to a carpet shop,you getvsoldca carpet !

I also was upset to find out that despite researching for an EP with a sound reputation and experience,( as highly recommend Ed on here many times ) that he is not guaranteed to perform it even though I'm on his personal theatre list.

As far as questions are concerned,I asked for his honest opinion on the difference it might make,what other options I had,rate of success ,would he be doing it himself and whether they use general anaesthetic or sedation.

I hope you find these thoughts useful in making your mind up. Remember you can always stay on EPs clinic and see how things go. Perhaps ask for review in 6 months ?

Best wishes xx

bassets profile image
bassets in reply to wilsond

Thanks Wilsond. Those are my questions exactly. I'll have to keep musing on it...

I too understand exactly why you would be dithering, and Wilsond has expressed it all brilliantly :)

All the unknowns (risks of the actual procedure, risk of making things worse/creating new problems arrhythmia wise, how effective or harmful alternatives to ablation might be, the relative advantages v disadvantages of leaving it) ... everything felt just too uncertain to make the decision to go for the ablation.

I actually found myself booked for a RF ablation without any discussion following a hospital admission & cardioversion, and (though very nervous) I was going to go ahead. Then chest infection meant it was called off, and recognising my own lack of peace over it all, I took the delay as an opportunity to see my EP privately, as I had not been able to discuss the decision with him on the nhs. Best money I could have spent! So I think you’re doing the right thing.

I prepared a whole load of questions based around the unknowns I listed above. (Risks, alternatives, etc)

Also, when I sent him my copies of ECGs, AF readings, echos prior to the appointment, I also sent an email to explain why I had booked &what I was hoping to get out of the appointment. I said that I’d already read up about ablations and stats etc... I didn’t need to use up valuable appointment time on general information, what I needed him to do was take time to understand my own health/arrhythmia/situation and respond about it very personally to me. To help me to understand what is best course of action for me. That made all the difference, I think.

There’s also that classic question to ask a medic ‘If it were your ...(mum/sister etc) what would you recommend they did?’ That never does any harm! My EP must be used to it as he preempted it and told me without me asking 😂

Funnily enough I didn’t actually need most of my prepared questions because immediately when I saw him he said he thought we should hold off on an ablation - my AF hadn’t deteriorated as anticipated in the intervening months, so his advice was to keep on with healthy lifestyle things, keep taking the meds and be ready to leap onto the waiting list when it becomes necessary. (Note it’s a ‘when’ in his very experienced opinion, and I’m sure he’s right.)

He said that medical science improves all the time, and it was not harming my prognosis to wait. (Of course we weren’t expecting a pandemic then - nor the probable increase of waiting times!)

But as a result of feeling he understood ME (my current medical and quality of life situation and future options) and that he was making decisions based on me as an individual, I would not hesitate to go for an ablation when he says I need it. (Well i’d hesitate because I’m a wuss! But I’d definitely do it!)

Hope you have a really good appointment and come to a decision you feel at peace over. Jxx

Thanks Jane. I'll have to consider the questionsI need to ask, and those I want to. I'm a wuss to which is why I asked for advice! Anything that helps me to make my mind up is good.

All I can say is if you are worrying about the procedure , the worry beforehand lifts when u walk thru the hospital door as u r whisked along with such professionalism, u will suddenly feel a calm.....and whoosh before u know it you’re done!Ask him what you feel u r worrying about...is it how long u r under, ? Is it how often he’s done this? Etc....

You’re in the right path goung to see him, only u can make your mind up.

Personally I saw it as just a day out of my life and a chance to get this cloud lifted, I didn’t dig too deep.

Hope you have a good discussion

Sue

bassets profile image
bassets in reply to Morzine

Thanks Sue, that's very helpful. I'll have to make a list ...

I suffered from svt which got progressively worse. It took quite a while before I could convince anyone that I had a problem. When it was finally diagnosed as svt I saw an EP. He recommended an ablation but said the decision was up to me. I was very nervous and was trying to convince myself that I was ok without one. I cancelled an ablation. I asked on here and I think it was Bob who said, you will know when you are ready for an ablation. Over the next 6 months my svt episodes got more frequent and lasted for longer until I went back to the EP and said I was now ready. They sort of welcomed me back with a knowing look of we knew you would eventually. I had an ablation over a year ago now. No svt, no meds and all ok. I think I am lucky in that svt is easier to ablate than AF etc. Good luck in whatever you decide.

bassets profile image
bassets in reply to Fazerboy

Thanks Fazerboy, I think that's why I'm dithering. I keep asking myself do I really need this?

Fazerboy profile image
Fazerboy in reply to bassets

I’d say if in doubt then postpone it. The EP team won’t mind, they will just move you down the list and give your slot to someone else. You will know yourself when your quality of life justifies trying the ablation. Also, I decided that the longer I had svt then the more the rogue signal route was established and the harder it could be to deal with, sort of the sooner the problem was nipped in the bud the better.

bassets profile image
bassets in reply to Fazerboy

I think you're right. I'm a bit scared, that's all!

Fazerboy profile image
Fazerboy in reply to bassets

We all are especially up to the ablation day. Then you have it done and think what was all that about. If you do have it done just rest, rest and more rest for about 4 weeks if you can.

bassets profile image
bassets in reply to Fazerboy

Thanks again. I'll have another muse on all this, but I'm thinking you're right.

Hi Helen, I had two ablations and now waiting for a pacemaker, I really believe it has improved my quality of life

Go for it

Dave

bassets profile image
bassets in reply to Golfer60UK

Thanks Dave, that's cheered me up. I have some musing to do now.

BobD profile image
BobDVolunteer in reply to bassets

Reading all the replies, you should note that all of us who have had ablation recommend it and nobody has said they wished they hadn't. It is only those like yourself who so far have not bitten the bullet who are reticent. There is an old saying "when the pupil is ready the teacher will come" which can be applied here. If you can reduce your AF burden to a level that does not affect your daily life by modification of life style then great . It works for lots of people. Unfortunately AF is generally a progessive condition best treated early so don't leave it too late. Never say never.

bassets profile image
bassets in reply to BobD

Thanks Bob, you're right. I'm just a wuss.

I had mine January 2018, no AFIB since. No drugs since May 15 2018. I hated the drugs side effects, having to take them and the hassle of AFib attacks, and always having to have a plan for holidays , days away just in case i gad an afib attack.

bassets profile image
bassets in reply to KMRobbo

Yes I'm fed up of all that, thanks, KMRobbo.

Hi Helen, my question would be what type of ablation are you having. Is it Radio frequency (heat) or cryo (cold).I'm having cryo ablation in 2 weeks but requested cryo after doing some research.

So my advise would be do your research and ask which ablation type is on offer.

This is part of what I found and helped me to make my decision, good luck and try and relax if you can. 😊

When it comes to disabling damaged tissue, using cold has several other advantages over using heat. Cold temperatures are less likely to affect healthy heart tissue or other nearby structures. Research shows cryoablation to be significantly more effective than medication. Best of all, patients usually experience less pain with cryoablation than with another type of AF treatment, known as radiofrequency ablation, that uses radio waves.

BobD profile image
BobDVolunteer in reply to Visacrem

It is important to understand that cryo ablation has limited use. Because the balloon is a set size it can only affectvely treat pulmonary veins which are of similar sizes. Many people have PVs which are not and some have conjoined veins. This means that coverage can be patchy meaning other areas may well still be firing.

It is often found that rogue signals are coming from other areas of the atrium which the balloon is unable to treat. Whilst cryo ablation is faster and easier to perform and as a result often used as a first attempt one must understand that a follow up RF ablation is often needed to deal with any areas missed. (See Flapjack's post).

bassets profile image
bassets in reply to BobD

Thanks again Bob, that's very useful. Any facts like these will inform my decision. I'll probably feel more comfortable with this when I've talked to the EP on the 21st.

I think it's cryo. I'll check but I think that was mentioned. Thank you for this - it's really helpful.

Thank you all who have taken the time and trouble to reply to me. This is the most support I've ever had since being diagnosed. I suppose everyone goes through this do-I or don't-I phase, but it's really good to have differing opinions before making up my mind to go ahead.

My EP went through the details of the procedure, its percentage cure rate and risks so, if yours doesn't, you might want to ask. In truth, I was so poorly with my atrial flutter that I just wanted to get it over with and it's my nature to put my trust in doctors' training, skill and experience.

He told me that in my case the flutter was occurring in the right atrium, which was easier and safer to ablate, but that this can "mask" some fibrillation, which might not become apparent until during the procedure, and which can then be dealt with at the same time.

He went on to explain that, in atrial fibrillation, the faulty conduction pathways are near to where the pulmonary veins enter the heart, in the left atrium. To reach here, the wall between the two atria, the septum, needs to be pierced. It can be the very variable and unique to each person's anatomy here that presents the doctor with the need for more care than with flutter. This is because the area to be ablated lies close to the pulmonary veins, which must be avoided, and also because the wall of the heart here is of variable thickness but is always thin and can be pressing against the oesophagus, which also needs to be protected from the heat of the catheter.

Steve

bassets profile image
bassets in reply to Ppiman

Thanks Steve, this has given me more food for thought!

Last outpatient appointment I had I walked into the consulting room determined to say that I’d had enough and didn’t want any more intervention. Before I could open my mouth my EP said, “ if I were you I’d have another ablation”.

I don’t think any doctor has ever been quite so honest and straightforward with me before. The only question which then arose was whether to have sedation or general anaesthetic. I chose GA. Four months down the line I can truthfully say I haven’t felt so well in years.

You may ultimately find you need the procedure repeating as sometimes pathways are missed or the pesky afib finds a new route. Many people on this forum have had several ablations. The majority are pleased they did so, I’m one of them.

Thanks spinningjenny, I hope my EP is as forthright as yours was.

I’m booked to have a cardio ablation 6th July, I’m nervous but my AF is getting more frequent, two in the last four days, always at night for some unknown reason, this forum has been truly helpful, hopefully I will be in that percentage who are successful, I wish you well whichever decision you make

bassets profile image
bassets in reply to Lesleyray

Thanks Lesleyray, I hope you have a successful ablation when it comes - please let us know? Good luck to you :)

Lesleyray profile image
Lesleyray in reply to bassets

Thank you and yes I will 👍👍😀

If you've gotten this far, already being on the list and soon to see your EP, that pretty much tells me you've made up your mind to get the ablation; otherwise, you'd be putting up with the inconvenience and worry that a-fib causes. I've had 2 ablations and didn't think twice about having them as I hated having a-fib. As far as questions to ask your EP, you've probably learned more than enough through this forum, as I did. Even so, I'd ask the basic questions of how long in the hospital, activity level immediately returning home, etc. Good luck to you!

bassets profile image
bassets in reply to Snowgirl65

Thanks for this, Snowgirl65. I just need that bit more confidence to push on.

Snowgirl65 profile image
Snowgirl65 in reply to bassets

I understand completely!!

bassets profile image
bassets in reply to Snowgirl65

👍

My suggested questions are directed to your EP and the process.

I would ask your EP the following

1. How many ablations has he/she done? I don’t know what a good number is but my EP had performed 500+ and was 65 years old

2. Is your EP going to be doing the surgery or will he be supervising a newer surgeon? I understand the need to train others but I selfishly wanted an experienced EP.

3. How is experienced is the Surgical

Team? And how long have they been working as a Team? You want a team that is both experienced and accustomed to working with one another.

4. How will the quality of my life improve with an ablation? And how long might the improvement last?

Hi Mjlarson, these are excellent suggestions which I'll certainly take up. I'm afraid I'm a bit foggy-minded on my meds as they make me very weary, and sometimes I couldn't think my way out of a paper bag, so thank you.

Ducky2003 profile image
Ducky2003 in reply to bassets

On the question about the team, its probably impossible to say until the day, who will perform your procedure as emergencies come in and rotas get changed. I was told initially it was my EP who would fo the procedure. A week later, it was changed to another EP and the day before, it was changed to a 3rd. I am fortunate that my hospital has about 5 highly skilled EPs so it wasn't as if I was going to back out. Incidentally, my EP volunteered that if it were his family member he was advising, he would advise them to go ahead.

I'm nearly 7 weeks post ablation so too early to tell if it's worked but I had to give it a try as the AF was taking a turn for the worst.

bassets profile image
bassets in reply to Ducky2003

Long may your recovery continue! Thanks for your thoughts.

If you live in the UK you are lucky to have the option of dithering on the NHS. For many the choice is go private or wait for years. No criticism is implied, I was dithering for a while before COVID did the dithering for me. :-)

You're right there Ivan. We are lucky to have the NHS, thank you.

From my point of you, if you’re episodes are becoming more frequent you may not want to wait too long for an ablation as they say, Afib begets gets Afib, which overtime from what I understand there will be more and more areas that they need to ablate due to the frequent and ongoing afib. I’m no expert at all just going by my personal experience. it is a big decision, best to you.

bassets profile image
bassets in reply to Tux18

Hi, my episodes went from 2 a year to every few days now. Thank you Tux18

I was delighted to get mine as I cannot really even move when in afib. It is no life and I had to be hospitalised for up to 12 days at a time and electrically vardioverted each time.

. I had the first ablation in May 2020 and the second six weeks ago. It was a long recovery last time, about five months to get back to running (actually jog/walk) and 3-4 months to even be able to walk my old distances and pace. But I felt I had no alternative.

The procedure itself, esp the first, was ridiculously easy in my case. I was terrified but it was far easier than I though even under sedation. Numebr two was GA and a bit more awkward but still okay nowhere near as awful as havi g a 'central line put in my neck when I was once in hospital with afib!

Good luck

bassets profile image
bassets in reply to Jajarunner

Thanks jajarunner, that's good to hear.

Hi bassets, when my cardiologist/ EP recommended ablation to me I was nervous and worried and waited 4 months and in that time I nattered, worried, and was frightened at the prospect.!! But in the 4 months leading up to my ablation I was been reminded frequently why I was offered this procedure as my quality of life could have been better. I’m glad and very thankful I went ahead with it and then a further 2, so 3 in all. The risks a minimal. There are risks in having a tooth removed, but the chances are this procedure will improve your quality of life. I’m glad I had mine done even though I am a total wimp I would choose ablation over a tooth removal to be honest.👍👍

bassets profile image
bassets in reply to Jetcat

Thanks Jetcat, that's exactly what I want to happen :)

Only you can decide, but my ablation helped with my afib. It did not cure it but it made the symptoms less. Now after 5 years from the procedure I still take blood thinners but no other meds, the procedure was not anything to worry about, it was a simple, no pain, A nothing experience for me. Had the procedure in morning went home later that day. The worst part of the procedure was waiting and worrying (I was really nervous) Recovery was nothing relaxed a few days, thought about what i had just done and was very glad I did it. My quality of life now is normal.

bassets profile image
bassets in reply to Bob002

Thanks Bob002, that's very reassuring.

Get the book THE AFIB CURE by EP John Day. Might help you make up your mind on what path to take. He goes into lengthy discussion about managing AFIB with/without ablation. It comes in audio book, too. Good Luck!

Thank you Lord, I will!

Hi Bassets, you have been given a lot of good advice here and hopefully it has helped you towards your decision. However, I was going to have an ablation last year and decided against it at the last minute. I hadn't seen my EP for some time, I had just seen the cardio nurse and she was the one that put me forward for it. She didn't go through the procedure saying that the surgeon would do that. 9 months later I had a txt message reminding me of my appointment two days later. An appointment that I had no idea about. I went to it and assumed it was at the cardio clinic as usual to find out it was the pre-assessment appointment (Thursday) ready for surgery on Monday and that I was in the wrong place, I needed to be the other side of the hospital. Eventually got there and said that I had not received any information about this appointment and asked when the surgery date was as at that time I didn't know. When they said the following Monday I said I couldn't go in then as I was booked to go away on the Thursday and it was something that I couldn't cancel. The nurse assured me that once I had had it done, I would be fine to be towing my caravan and be able to do all the physical stuff that I had to do when away.I had the pre-assessment and all was fine and set up for the following week. By the weekend it was really playing on my mind and so I came on here and asked people for their advice about the recovery period and for advice. After a lot of first hand experience, the consensus was that no-way would I be fit to do what I had planned and many explained that they were not fully 'fit' for some months later. So I phoned the hospital and explained that I wouldn't be able to come in that time as it was too short notice to change my other booking.

Some weeks later I was called again, fully planning to get the ablation done this time, I read the letter and it turned out the ablation was going to be done by someone I'd never heard of, and where as I had been lead to believe it was going to be an RF ablation, this was now changed to a cryoablation. I was very concerned that it was all turning out to be not what I had been lead to believe all along, and still no-one explained the procedure to me, and I was mislead about who was doing it, what sort of ablation it was and more importantly, I was totally mislead about the recovery period and possible side effects after the procedure. I now think I made the right decision as I haven't had another bad one for over 2 years.

I don't want to put you off, but I would suggest you ask all these questions and especially about recovery so that you go properly prepared. I was pointed to a couple of excellent pages about what to expect before an ablation and afterwards. Perhaps someone could point you towards them as I don't remember the web page.

All the best for whatever you decide.

bassets profile image
bassets in reply to daysyday1

Thank you for going to the trouble to tell me all this! You were treated really badly, weren't you? I will have a good think about this and will make sure I know what's what when I talk to my EP. Thanks again, and keep well.

I was very nervous and put it off until I was having AF every 2 weeks.It was the best thing I ever did and I have had 2 and a half years of being free from AF.

Thanks Dullcimer, you've made me feel much better :)

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