My first post, but I've been following your wonderful advice with interest since I joined the PAF club in April 2018.
I had an outpatient follow-up with my cardiologist yesterday and he's referred me to an EP for ablation. This threw me a bit because I haven't had any episodes since April, and since I got my head round the condition it has been pretty much 'out of sight out of mind' (apart from the pesky bisoprolol side-effects - but that's another story!)
So my question is, is ablation warranted with a history like mine? I know you can't give me medical advice, but I'm really interested in your experience-based views. Also, if I were to go ahead, any idea of the waiting times in Devon, UK?
Thank you and Viva la NSR!
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Corazona
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I think to ablate or not is a very individual decision, no two of us have exactly the same circumstances or medical history . We can only read, learn and try to do what is best.
Thanks doodle68. I just read the thread - lots of good advice, including yours
Hello Corazona and welcome to the forum and thanks to Doodle for saving us the need to repeat all the good stuff which Slattery’s post generated. I think there is not a lot we can add, but having read your intro, you are clearly someone with a zest for life which is probably encouraged by having two youngsters! I have to admit that I am pro ablation, provided sufficient research is carried out to be sure that it’s the right thing to do as we are all different. Two things I would suggest for you to consider. First, see the EP and hear what he has to say about treating your condition. Ask him to be frank about the likely outcome and he should also be happy to discuss his/her track record. Establish in your own mind if you have confidence in both his or her’s ability and their desire to do what is right for you. Go on the waiting list, but use the time wisely to make sure you are comfortable with what has been suggested. If you change your mind, then it’s easy to withdraw from the list, but it you decide to go for it, then no time has been wasted and the general view is, the quicker it’s done, the better.
The other thing is to make sure you tell the EP about any issues you have with your current medication as there are alternatives and they are the experts so make sure you don’t miss the opportunity.
Good luck with your deliberations and please keep us informed of your progress.....
I’ve had 2 ablations and still have AF but it did give me 3 years free of AF and I am now much less symptomatic.
As others have said - a very personal decision and I am pretty sure I know what the 2 EPs at Exeter may say - if you are young - under 45, otherwise and fit with no other underlying conditions you can first look at lifestyle options as they have shown to be as effective as ablation in many or you can look at control - either a lifetime of drug control or ablation. Both carry risks but drugs are for life and ablation is a one off or a limited series of treatments and can help or eliminate AF, especially if you are in the early stages of developing AF - ie you have only had a few episodes.
That not to say if you are older they won’t offer you an ablation - it’s just that the chances of success tends to lower with age and the length of time you have AF - which is why your GP referred you.
If you haven’t already do go to the AFA and read about the treatments,
As to waiting lists - last time I enquired - 18 weeks minimum for NHS waiting list to see an EP at the RD&E and then dependant upon evaluation and list availability as to how long after that for ablation. I think referrals to Bristol have now closed but there may be a possibility for a referral to London if you are prepared to travel and you would probably get seen in a few weeks.
If you have private insurance - the Nuffield in Exeter also conduct ablations but the waiting list to see either of the EPs at Exeter Heart there earlier in the year was 4-6 weeks but it is changing all of the time. What many people do is pay for a private consultation and then ask to be put on NHS list. You won’t get the ablation any quicker but you will see the consultant to have the conversation. Cost circa £150 + cost of tests circa - £300+.
What I can say is that both the EPs at RD&E are excellent and there are also 2 Arrythmia nurses who hold a weekly clinic so do think about talking to them - you can ring them - they may not get back to you for a while but they will normally get back to you.
Bear in mind that Jan & Feb there was a moritorium on all elective procedures and it is worth bearing in mind that the same thing may very well happen again in 2019.
I act as a lead patient for the patient-clinic liaison so please do feel free to PM me.
Thank you so much CDreamer 👍 My cardiologist at RD&E (Dr Taylor) referred me because of recent onset and relatively young age (56). I also told him how I feel about taking meds and what my side-effects are - another reason for him recommending ablation. He asked me to persevere with bisoprolol and discuss alternatives with EP.
Thanks also for your knowledge of services in Exeter and beyond. The waiting times seem long - I may well go the private route for EP consultation and take it from there. I knew about the cancellection of all elective surgery in RD&E last winter because my 95 yo mum was a patient there at the time. The flu epidemic saw wards closed to booked patients to make way for flu patients - fluey mum spent 2 wks being treated on an orthopaedic ward! Goodness knows what next winter will bring.
What is your cardiologist's reason for referring you to an EP? Is it with a view to preventing future AF episodes or is it that you have some other asymptomatic arrhythmia that could lead to something more serious? Are you sure that you don't have AF but not aware of it at the time? Also, are your bisoprolol side-effects actually side-effects or symptoms of your condition? As mentioned above, only you can make the decision on what's best for you in discussion with your cardiologist and EP. You need to ask them questions to be able to make an informed decision. It is also important that you are comfortable with them and have complete trust in them.
In some respects, you may consider yourself lucky in being considered for an ablation as it is clear that many members of the forum experience debilitating symptoms but either have not been offered or are still awaiting an ablation. I don't detect any anxiety in your message, just surprise, but I can say from experience that the procedure itself is very easy (from the patient's perspective). I admit that I had a GA, but I believe that those who were only sedated tend to agree.
Hi IanMK 👋 and thanks for your reply. I don’t know for sure if I have asymptomatic AF, I just know about the dramatic, scary episodes in April preceded by years of manageable palpitations. Cardiologist referred me because I fit the current treatment protocol I guess - he said I was a good candidate (recent onset, age) and he knows I don’t really want to live on meds if I can avoid it. My mum has AF, now also heart failure and she can’t tolerate beta-blockers so it’s untreated, although she does have a pacemaker for HF. One of my brothers also has PAF. At the moment he prefers not to have treatment, but he has modified his sporting activity - he used to do a lot of endurance sport, not any more. I haven’t really identified any triggers and cardiologist said that from my history it sounds like I might have been born with some overactive, excitable heart cells - I quite like to think of them like that!
In terms of anxiety, I did experience that quite acutely for a while, but then I realised days were turning to weeks and I was watching time pass by, a bit like being a bystander in my own life. But I wasn’t ill. When I twigged that the bigger problem was in my head not my heart I made myself snap out of it. Reading threads on here helped me get things in perspective and when I’d absorbed enough I just stopped thinking about it altogether. So the conversation with my cardiologist yesterday was a bit of a surprise, yes - I thought I was doing so well that we’d be talking about tapering down the bisoprolol with a view to discontinuing altogether! Lol 😂
Hi Corazona, welcome to the club you wish you didn't need to join.
My story started only in May last year, with my first known AF event. After several hours of feeling more and more distressed, I eventually called the Ambulance around midnight from my bed. The paramedics did a portable ECG on me and recorded frighteningly high heart rate 280+ and recognised AF straight away. I reverted naturally while lying on a trolley in E&E about two hours later.
After reading on here about AF I bought myself a Kardia, so that I could catch and record any future events. I saw my GP and got a referral to the local cardiac unit. They were useless, and totally uninterested in my AF, but at least established that my heart is otherwise sound. Nothing happened until late July while we were away from home, and I simply recorded the event and waited 'till we returned the following week when I went to see my GP to ask for referral to an EP, which I got. In November I saw the EP and after hearing my story and seeing the Kardia recordings, he put me on his 12 month waiting list for an ablation.
I have had one further attack since, in March this year, while on the Bisoprolol and Apixaban, and I have now decided that I will go through with the ablation. Just to get off the Bisoprolol would be a positive! The waiting list has slipped, at least a month, so it may around Christmas or even next year.
I too was surprised to be offered this treatment so quickly (not counting the waiting list). I'm male, aged 68 now and will be 69 when it comes around. I'm otherwise fit and active, though less so since the drug regime.
This may or may not help you, only you can make the decision. My motivation comes from having had a third event, and the thought that things will only get worse without treatment. Good luck, whatever you decide!
Hello momism 👋 Thanks for telling me your story. Luke you and others have suggested, I’m goi go to get on the waiting list and think about it at leisure.
If you are not happy with this cardiologist advice go for a second opinion!
I saw 3 cardiologist and 5 EP before I had my ablation in April
I am 55 and after each episode I thought i was identifying new triggers and I didnt want to do the ablation !
But when it became more frequent I had no choice other than to ablate !!they kept me on bisoprolol after the ablation as I have postural tachy cardia as well !!
Thanks falah12345. That’s good advice. From all the threads I’ve read it seems many GPs and cardiologists are not overly interested/competent in AF; among EPs there’s a spectrum from good to best; and AF patients need to have confidence in the professionals they’re going to entrust with their care.
I forgot to mention one important thing that encouraged me to do the ablation is the fact that one of the EP i saw he had AF him self he is in his 30s and he told me ablation is the only treatment forA F, when I went to him i wasnt having any episode for few wks he said it will come bk and I remeber I got angry when he said that but obviously he was right!!
Not much I can add to prior posts, but here was my decision process about 6 months ago. A friend of mine has gone down a very similar path recently, and reached same conclusion.
My first event, flutter with HR at 150 late last year, disappeared within a few hours with medication.
Had a few more events over following weeks, also resolved with meds. I decided to try PIP approach rather than rush into an ablation....but over a month or so the events were becoming more frequent and lasting longer. When they lasted 8 hours or so, it was starting to meaningfully interfere with my normal activities.
The other fact that weighed in my decision, is that apparently the probabilities of an ablation being successful are much better when done early, and reduce over time as one has more events.
So, I reached a point where I wanted a better and more reliable quality of life day-to-day, and I wanted the "odds" on my side by doing the ablation sooner than later.
While no surgery is without risk, the complication rate for ablations is very, very low....and some of the patients have significant other health issues - so presumably for relatively healthy patients the risks are even lower.
Thus, I decided to proceed with the ablations (two of them, one Flutter one Fib), and in retrospect am very happy with that decision. So far, so good, about 5 months post procedure. Hopefully it will last longer term, but no guarantees...but looking back it was the right decision for me.
And as mentioned above, another friend of mine has reached a similar decision and having ablations in next couple weeks. He had similar experience where events increased in frequency, lasted longer, etc.
All that said, yet another friend of mine who is an MD (neurologist, not EP) has pretty frequent AFib but at lower HR levels around 100 to 110. He has just used Meds for a few years now, and is considering an ablation but holding off for the time being. Part of his thinking is that ablation procedures and outcomes will probably continue to improve over time, so waiting may benefit him.
Like a lot of personal decisions, think this is one where if it doesn't bother you too much you endure it and carry on...but if it reaches a point where it starts to alter your desired lifestyle and constantly be on one's mind, it prompts one to try a different path...typically an ablation.
The only other thought is that if your EP suggests an ablation, but you would be on a waiting list for months, might make sense to get on the list and cancel later if decide not needed.
Thanks Barabas. I’m glad your procedures went well for you. The thing that is affecting my QoL most is the bisoprolol. I’ve only had a pair of bad episodes on the same day in April, and now after months of nothing I’m feeling a bit blasé about it - I know, famous last words!! 😂 Just as you say, I’m going to get on the waiting list and take it from there.
I would......particularly because of the waiting time in U.K. I stopped my Sotalol 2 days ago. Almost needed ER again due to damaged colon from diverticulitis. If my SVT returns, I'd have another ablation. Rx that slows heart, slows digestive tract too.
Could you get referred to Derriford (Plymouth)? I had an ablation there about 18 months ago and the wait time then was 6 months. It was successful and I have been AF free to date. Excellent care throughout. Good luck, whatever you decide.
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