Appointment at St Barts

I had my appointment at St Barts today (the last one was about 6 months ago) and have been advised that I should have an ablation. I was reminded by the doctor that AF is a progressive condition and will almost certainly get worse over time-although it isn’t possible to predict how quickly this will occur. It was also pointed out that every time I have a bout of PAF-on average once a month- there is a risk of stroke; PAF is not less dangerous than AF. Apparently my left atrium is enlarged slightly and this will get worse without the ablation. When I asked how long I would have to wait for the procedure the reply was “eight weeks”. I said that I would prefer a bit more time so it was agreed that if this appointment wasn’t suitable I could postpone it. I was immediately offered a general anaesthetic when I said I was anxious about the procedure itself. Risk of stroke is about 1 in 200 and I must start an anticoagulant at least a month before the ablation (preciously I had been told 3-4 months). None of this information was particularly new, but I was hoping they might say that it would be ok to postpone for a year or so.

I still think the risk is rather high and I don’t relish the period after the ablation as I will almost certainly have further symptoms and be convinced the procedure has failed. I also have to decide whether to have the general anaesthetic or sedation. All in all, not a very good day.

[sirey]

I know it is a difficult decision to make and only you can decide. However Barts is an extremely good hospital. I attended Barts for my A.F and almost three years ago had a cryoablation. It was the best decision I have ever made. I know there is always a possibility of a reoccurrence but if that happened I would have it done again. Good luck in the future.

[Hidden in reply to sirey]

Did you have the procedure done under a general anaesthetic? If you didn’t, was the procedure uncomfortable?

[Hidden]

It’s all down to interpretation because I would have thought that you had a very good day. Expert advice telling what we say on this forum about the progressive nature of this condition and an opportunity to have a procedure in weeks rather than months at one of the UK’s leading hospitals which specialises in heart treatment. Of course it’s a decision which needs careful consideration but I am fairly confident that there are a good few on this forum that would love to be in your shoes now.

I know the reality of having it done can be daunting, but how many posts have you read where someone has said they wished they had never had their ablation - very few if any and 1000’s are carried out a year. Good luck with making your decision....

[Hidden in reply to Hidden]

Well, I have decided that I must have the ablation even though I dread the prospect. I was told that the earliest time would be 8 weeks, but I could rebook if that time wasn’t suitable. Anything up to 6

months would be acceptable. I think one of the main concerns is that it won’t work on the first attempt and I’ll have to do the whole thing again.

[Hidden in reply to Hidden]

Good decision......suggest you read these factsheets....

heartrhythmalliance.org/res...

heartrhythmalliance.org/res...

[Hidden in reply to Hidden]

Thanks

[KMRobbo]

KMRobb

I had PAF which was becoming more frequent and less controllable, and was on flecainide and diltiazem. Had several unwelcome side effects from the dltiazem. ( was on this as I do not get on with beta blockers). I also had mild LVH (enlarged ventricle). I had an afib pvi cryo ablation jan 29th 2018. Not had Afib since. I Unfortunately developed reentrant Atrial flutter 8 days later very possibly promoted by the flecainide i was still taking . I had an rf ablation in the right atria for that Feb 26th 2018. The flutter stopped in procedure and gas not returned. I came off all drugs May 15th 2018 which is brilliant. Sometimes get spells of ectopics lasting seconds to hours , but I ignore those . EP not concerned. They were more frequent earlier in the year but cannot remember the last one, probably at least 6 weeks ago. Sometimes (very rarely) get unusually HIGH HR when running, EP cannot explain, however I stop running and it stops. I start running 45 mins later and it does not return!

I am happy with the ablation. If AF returns tomorrow morning I will happily have another ablation tomorrow afternoon to keep off the drugs.

Apart from the afib I had no other health issues and had been pretty fit before AFIB. I was 57.5 when I had the procedures.

[Hidden in reply to KMRobbo]

Thanks for this information. If you don’t mind my asking, how long did you have PAF before the ablation? Was it getting worse month by month or was the progression slower than this?

[KMRobbo in reply to Hidden]

I was diagnosed September 2015. I was completely asymptomatic at 165 resting (and up to 243 running) and only was diagnised afib owing to my Garmin running watch with hr chest strap . I do not get on with beta blockers so after briefly trying bisoprolol and Atenolol I was put on 120mg verapamil which had almost no side effects. I also discovered that if I went running when I went into afib 7 or 8 minutes later I went back to normal rate. I would just take an extra verapamil and run. This was great for approx 12 attacks over 20 months . But the attacks were more frequent and the 10th and 11th took a lot longer than 8 mins to resolve. The 12th time it did not work and I was between 130 and 195 resting HR for 8 days until eventually cardioverted by flecainide infusion in the CCU of my local hospital. Then i was put on Flecainide to keep me in NSR and diltiazem to keep the hr low. The medics did not want me on a PIP as it had been so difficult to cardiovert me. Easier to keep me in NSR than to get me back to it from afib.

That was when I decided to have an ablation. Looking back I should have made a fuss about each afib episode and had an ablation much sooner. I would have avoided a fairly shit 10 months of my life with the diltiazem side effects.

[Hidden in reply to KMRobbo]

That is interesting. I was told that I would still need to take an anticoagulant after the ablation. I suppose I might have misunderstood this and the doctor mean “temporarily”. However, I thought that there was a move to taking anticoagulant permanently even after ablation recently.

[KMRobbo in reply to Hidden]

I think different EPs may favour different strategies. I started taking PRADAXA (dabigatran) 25 days prior to my ablation and only stopped taking it after May 15. If I remember correctly I was for to take it until my 3 month EP post ablation appointment, but developing flutter screwed that up. I was never going to be permanent. My cha2ds2 vasc2 score is zero and was only 57 and male . I believe this to be in line with the NICE guidelines. ( I never discussed this in detail with my EP) . Risk of stroke versus risk of bleeding . Cha2ds2vasc2 versus Has-bled.

google.com/url?sa=t&source=...

[Jalia]

I would have thought that you had quite a good day ! Only you can ultimately mske the decision but you are having monthly episodes which is pretty frequent.

You are lucky to get an appt so soon and able to postpone ! My first ablstion was in a top London hospital and offered in 6 weeks.....took me by surprise !

I waited 12 months for an appt for ablation no 4 ( not London ), and asked to postpone for a few months as I was having far fewer episodes. It was a case of 'take it or leave it ' so I left it !! So far, so good, no AF for 12 months !

[Hidden in reply to Jalia]

Thanks for your reply. I have already waited 6 months since the first appointment, and the original referral was last year. I could have gone to Basildon which would

have been much quicker, but I opted for Barts. So far I have been very happy with the quality of the consultations I have had.

[wilsond in reply to Hidden]

I was put on ablation list here at Coventry.... 12-18 months wait. In the meantime my AF has improved in terms of frequency and effect. My EP and I discussed whether it was still appropriate for me several months ago,and I have just done a 7 day ho!ter for him to finally decide.

All in all it has been a bit of a weird time",shall I? Shan't I?!!!! " too much time to think about something is definitely not good for me..and I suspect you too!

I wish I was going to Barts,you will be in good hands. Best wishes for a speedy date and outcome.

One thing, why are you not anticoagulated already? Also the figures for stroke risk has worried me.. I in 200? I get AF still,several times,a week some weeks ,short-lived low level and not violent....oooh err! X

[Hidden in reply to wilsond]

The information on this seems contradictory. On the one hand I have been told that if the heart rate is below 100bpm this is not dangerous and there is no need to get medical attention. On the other hand, I have been told that every time I have a bout of PAF there is some risk.

[BobD Volunteer]

I find it strange that you thought it unhelpful as to me that would have been a very good and positive meeting so it does show how differently we all view this mongrel condition. There is no doubt that early intervention has the best chance of helping with AF and your EP is quite right in what you were told.

There are risks in everything we do.. OR DON'T DO and we all have different levels of acceptance and expectation so I hope that with quiet contemplation you will find the balance you need. As I often say, "when the pupil is ready the teacher will come". Just don't leave it too late.

[Hidden in reply to BobD]

You are right that the correct way to evaluate the risk is to consider the risk of the procedure against the risk of *not* having the procedure. I have taken a decision to have the ablation, but my disposition will be to postpone it. If something is 6 months away I tend not to worry too much, but once it looms up it becomes more worrying. It’s not just the ablation itself I worry about, but what I imagine will be a stressful period afterwards. Do you know what percentage of people require a second or third ablation fairly shortly (say a year) after the first,

because it has been unsuccessful?

[BobD Volunteer in reply to Hidden]

Because there is no 100% cure for AF and all treatment is only for quailty of life, ablation, just as with all other treatments, must be considered as ongoing. Some people are lucky enough to stop symptoms after one ablation whilst others may need more. General consensus is that 70% success is about right on first attempt rising to 80-85% after two or three.

Do remember that the forum is not a good place to judge success as most people who have greatly improved QOL are away enjoying life rather than sitting pounding a computer key board.

[sirey]

I had the procedure done under sedation. If you do begin to feel a little uncomfortable they will sedate a little more. Don’t worry they watch you all the time. I came home the same day and it was a great feeling to wake up at home the next morning and think I’VE DONE IT. Once again though it is your choice and we can only give our experiences.

[Hidden in reply to sirey]

I was surprised when they offered to do it under a general anaesthetic almost immediately when I said that I would find the procedure anxiety provoking. I thought they were reluctant to do this. Also, I thought you had to be able to communicate with the team during the procedure. I have to decide on this. The EP recommended the general anaesthetic.

[jennydog in reply to Hidden]

I had a GA for my ablation. The EP said that the Anaesthetist could look after me whilst he concentrated on the ablation. That would certainly be a more expensive option for them!!

[Buffafly]

If you postpone you have got 'a year or two' to fret. Also I think if you have arranged to see one of the best EPs then don't take his advice it was a bit pointless?

[Hidden in reply to Buffafly]

I will take the advice- the EP said that 6 months was ok. There are some practical reasons why I would prefer to delay it.