I am on a waiting list for an ablation with a well known EP at Blackpool. My first AF attack came "out of the blue" in May last year, and this was followed by another unexpected event in July the same year. I entered the EP's list in November, as a result. I then had no further AF events until the middle of March this year, at my son's wedding during the reception. I have had no signs of AF since then. I've been active on this forum since before my second attack, and have read all I can and feel well informed.
Yesterday I was at a family funeral and during the wake afterwards my mobile phone rang. It was someone at Blackpool Victoria asking if I would attend tomorrow (that's today now) for a pre-op assessment for an ablation on Tuesday next week with a new EP they have just taken on. He is trying to fill his list with suitable candidates, and there had been a cancellation.
These things always seem to happen to me at the most inopportune times . . .
Anyway, I was in a noisy sad party atmosphere, had had a drink or two and bad food, and I didn't want to think about something else so serious that day. I said no, I would like to have met the new doctor and had a serious chat with him, or with someone else, about whether I should actually still go through with an ablation when it strikes me so rarely. He kindly suggested that he would try to get me an appointment with the original EP who's list I am on, the list has slipped from 12 months to 18 months, so I would come up again in about May next year, or even later.
Today, of course, I'm now wondering whether I have done the right thing. Since the assessment would have been today, I would have had a bad nights sleep and an early start to get there in time, and an ablation next Tuesday.
I don't know if I really want an ablation after all. I weather the attacks quite well and no longer feel frightened of this thing. What do all you good people think?
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Hi momist, I had my ablation at Blackpool four weeks ago. I was on the waiting list for 14 months. I also thought I was OK but fortunately I have an implanted loop recorder which monitors what my heart is up to. Two months before my ablation, I was informed by the hospital that my loop had detected a heart rate 240 during the night and I was completely unaware. I would say that if you have been advised to have an ablation, then go ahead. In these days of NHS cuts, they wouldn't be doing it if you didn't need it. Hope you are already on an anticoagulant so if you get called again at short notice, you will be ready. Good luck. x
Thanks. Yes, I've been on Apixaban (and 1.25mg Bisoprolol) since December last year. I was supposed to increase the Bisoprolol to 2.5mg but found that I had difficulty even climbing the stairs the first time I tried it, so I've stayed on the minimum dose since. I seem well acclimated to it now, and don't mind too much taking the Apixaban twice a day (it might be a good idea at age 69 anyway!). I believe you were under Dr Chalil? I hope to see him for further guidance as a result of this missed opportunity.
Yes, Dr Chalil performed my ablation. He said it was successful and I'm seeing him again in November. No complaints, very happy with the care I received.
Not really worth dwelling on Momist. Just work on the basis that at the time, it was not the right thing for you to do. Who know’s, but next time it might be different because AF generally gets worse, not better...........
Yes Flapjack, I'm aware that it is forecast to get worse. And you are right - it was not 'right' for me at this time, especially with other things happening in my life at the moment. I'm 69 in a week and a half. I just want to get on with my life, and a quiet life at that, but events keep getting in the way.
That's what I thought, before I had my first ablation, but it became worse afterwards. Had a second one and still had attacks and felt dreadful most of the time with lots of hospital admissions. I looked up the details, in my diary, after my third ablation for a friend recently and was amazed at all the attacks I had for 9-10 months after. I still have AF after 3 ablations. Was yours successful?
I only had mine on Tuesday. Went back today on reduced hours. So i will let you know how I get on. Fingers crossed. Having the dye treatment 31st October. I might have blocked arteries x
This is my first posting on this site but your message got my attention. I don't know how old you are and I think it would be helpful if everyone stated their age with regard to treatments for AF. Age seems to be an important factor in determining how successful or not procedures such as Cardioversion and Ablation turn out to be.
I have had three doctors saying that the younger you are the chances of success are significantly increased. The older patient is not likely to achieve lasting success with these procedures, the process having to be repeated and repeated. Both of the above procedures are not without risk. The main one being STROKE and or heart attack. I am 75 going on 76 next April. The hospital Cardiologists seem to be hell bent on performing these procedures without regard for the possible high risk of failure or stroke. This is what they CAN do and not enough attention is paid to wether they SHOULD.
Sorry to sound a skeptical note but I think that your instincts were correct in
Not to mention the damage ablations do to our hearts. I was once told by a cardiologist that ablations had probably made my heart stiff and of course if that's what they do, then how can the heart ever function correctly. I'm 67 and probably had my first ablation around 7-8 years ago and two others followed at around 2 yearly intervals. I just wish I'd been more aware of the healthy diet connection and tried that before having my first ablation.
Jean
All that's lost is the chance to have an ablation when you weren't in any way prepared for it with a new EP - you are still on the list, surely. I'd make sure of your status though in case someone has put down 'Doesn't want an ablation'.
Think I would have been the same as you. Also , me being me..so to speak.., I would want to know a bit about the experience of the new EP
I think you would be wise to still consider the ablation though. I don't get many attacks during the year but when I do they are sustained. I have agreed to 4th ablation due prob early part of 2019.
Thanks for your insight Sandra. Mine usually last 8 - 10 hours or so, and I've only been seen by the medical people during the first one. The other two I've ridden out on my own (with support from my wife). I carry a Kardia, and record what's happening, so I can pass that on to the EP. I'm currently happy to just 'wait and see' how it goes. If it gets more frequent or more serious, then yes, I'm happy to try ablation at that point.
Hi Momist if you had any doubt in your mind I think you did the right thing delaying the ablation.
As your episodes are infrequent so not really troubling you (or contributing to remodelling) there is nothing lost and you now have time to think through what is best for you.
I have done something similar delaying my decision to go on the ablation list until next year but I really think an ablation is not for me.
As you know I am an experienced advocate of ablation and would normally recommend it to anyone who has had their QOL affected by AF.
However in your case I think you did exactly the right thing. Remember the old phrase “decide in haste and you repent at leasure”.
1. You have clearly stated that you are now coping well with your symptoms.
2. Of all situations you were at a wake, not exactly the best place to have to make such a significant decision.
3. You had no chance to investigate the new EP’s credentials.
4. This new man may well be “the bees knees” but you need reassurance of that fact and furthermore I think that in your circumstances you really need to be reassured that an ablation is really what you want.
Take it from me an ablation, whilst being a straightforward procedure in the hands of an experienced EP should not be accepted lightly.
I suggest that you try and get another outpatient’s appointment even if it means going private to speed things up at that stage so that your current situation can be fully assessed. You can still be on the NHS list. This is the real problem with long waiting lists.
Relax you did do the right thing in my opinion. Always remember it is your decision and you must not be railroaded into something without due consideration.
Thank you so much Pete. That is just the help that I was looking for. I'm usually very comfortable with making my own decisions, and often contrary to those of other people, but this time I was left doubting whether I had done the right thing. TBH I have been swinging this way and that about being in line for an ablation for months now, and the longer I go without another session of AF, the more I doubt that I should go ahead with it.
With ablation, the whole business of very long waiting lists, sudden availability because of a cancellation and the possibility of worsening AF burden, is a real headache.
Playing devil’s advocate, can I ask what you would do if an ablation cancellation on your original EP’s list came up in a couple of weeks?
Well . . . Hypothetical situation but I'll try. It is likely to depend on circumstances at the time, but I would still be 'in two minds' about the whole thing. I've not had any AF now for very nearly six months, but then there was a longer break between July and March when it came on unexpectedly.
I should have seen it coming that day, it was bitterly cold (with horizontal snow). The heating had broken down in the church. We were all expected to hang around outside the reception establishment in the cold wind for the photographs. I hadn't been drinking regular supplies of water, but had had champaign, cava and white wine. Then red wine with the meal, again with a shortage of water to go with it. My own neglect, really. I could have insisted on staying warm and staying hydrated, but I was joining in with all the others.
So, in two weeks time, I would likely give the same reply. I'm waiting to see the EP again for a thorough discussion of whether I need to go through with this operation at this time, or try to manage my condition until it affects my lifestyle with more impact. BobD keeps saying, the treatment is only to improve quality of life - there is no cure.
I was just trying to highlight the difficulties we have making decisions when waiting lists are so long.
I waited 5 months for a cardioversion after a failed ablation for paroxysmal AF. This after being advised by the local professor of cardiology that it was unlikely to work in the long term, unless it was done in the next 7 days. In the end I cancelled it.
I have little confidence in our local NHS secondary care services, cardiology in particular.
Don't worry Hidden . I didn't find your message any kind of problem. I too have no confidence in my local cardiology department, who checked me out and eventually gave me a clean bill of health whilst ignoring the fact that I had had a session of AF. They also gave me the ultrasound scan twice, the second one with a consultant, and then sent me for a CAT scan with die, and I never did find out why . . .
However, the heart specialists at Blackpool have a very good reputation and I have confidence in them. I had to ask my GP to give me a referral to an EP there. It isn't too far to drive, and the parking is better than at the local main Lancashire hospital (Royal Preston).
I agree with everybody else. Maybe go back to them and explain why you had turned it down and ask to be kept on the cancellation list but only so long as you are comfortable with someone different carrying out the ablation. Could you find out the name of the new EP and google them to find out a bit more about them?
In your case I don't think it's a problem delaying it. An ablation is to treat symptoms of AF not the AF itself. I delayed as long as possible and only had an ablation when I was heading towards 80% of the time in AF. During that period, ablation techniques improved and I could choose the best EP. My ablation was successful.
I think you've done exactly the right thing. Do investigate both EPs thoroughly - get their stats and choose the most experienced one. Techniques are improving all the time and sometime in the future inexperienced EPs will have similar high success rates to the most experienced, but we're not there yet.
Thanks Mark. I think you've hit the mark there (see what I did?). I suppose that I must expect my AF to become more frequent in the long term, but I intend now to look after myself a bit more and try to avoid the conditions where it is likely to strike me. Everyone looks for triggers, and rarely find them, from my reading daily on this forum. I'll keep hydrated, and avoid getting cold, and eat as regularly as I can. And hope for the best. Meanwhile, I'll try to get to talk to the EP again.
I decided on my ablation as they were occurring every 5-10 days over 3-6 months.
2 attacks? how long did they last?
I would definitely not ablate with that.
I saw 5 specialists before deciding which way to go, they all had different opinions.
But generally there is no damage to the heart or concerns, so I would definitely wait until they are more frequent.
If you drink a lot, slow down now!
(one thing none of my specialists mentioned is how rough a recovery can be. 3 months in I have a new HR or 90, which occasionally flips to 120 for days during which I can't actually operate day to day. I don't know if these tachycardia periods are going to occur more often, but they are debilitating and due to surgery. So there are risks)
Cheers,
Marcus
( are you in a position to go private so you don't have the waiting list? 12 months is excessive)
5 specialists? Wow. So you were 'in the system' for quite a long time then. Yes, all of life presents risks, all you can do is try to minimise exposure and try to manage the risk if you can't. Life is chance. I might never have been born. I might have ended up a different person, with a different set of chances.
My attacks (now three) all last 8 to 10 hours, and so far have all occurred late in the day and I've ended up lying in bed (once on a trolley in the hospital) when they have reverted to NSR naturally in the small hours of the morning. Yes, I am lucky enough to have the resources to go private if I had to, but it would deplete them markedly if I did so, and I share them with my wife.
I agree with a lot of the replies, but it is about QOL I coped for good number of years with AF with slight changes to medication but in the end my AF became so frequent every 2 or 3 days for days at a time that I had an ablation in May and haven't looked back since, AF free now
Oh that's GOOD news. I'm so glad it has worked out for you. There's hope for me yet then. Yes, you are right, I should wait, and hope for good treatment when the time is right.
I was an idiot really, had af that put me in hospital. Then started Dijoxin and Ameoderone, which I took for many years, decided to have ablation because of these tablets, the ectopics were really only occurring 2/3 times a week,while I was taking the tablets, but specialist told me 80% chance of success, anyone would take those odds to get off terrible tablets, now have ectopic beats daily after four months from ablation, and unfortunatly back on these dam tablets again, would I do it again, definitely not!!
Don't blame yourself, we are all groping in the dark with this thing, and I think the medical people are the one-eyed leaders but still in the dark. My wife commented today that AF keeps being mentioned in her Facebook feed, but everyone is just addressing the symptoms and no one seems to know the causes.
I just did the same I was offered an ablation for next week my EP told me that there is a 50/50 chance it would be successful I am 76 years old and am not sure what to do so I have asked for it to be postponed.
Only 50/50? I'd do the same. The treatment is for QoL as everyone keeps saying. I have changed my QoL by giving up some activities, but then at 69 next week I perhaps shouldn't go sailing alone any more anyway.
I think the most important thing here is that you didn't know the EP ie his experience with ablations and whether you felt confident in him. In that respect you were right to delay.
A friend, who asked on my behalf, was told by a retired cardiologist that what was most important is that the ablation is carried out by someone who has done the procedure hundreds of times and has a high success rate (ideally the whole ablation team has worked together hundreds of times). In other words, track record matters. It sounds like it might be better, therefore, to have the procedure carried out by the original well-known EP. That said, there would be nothing wrong with going to see the new cardiologist 1. to establish if his record is as good and 2. simply to get information on whether an ablation is necessary at this stage. Be very direct: “How many abalations have you carried out, and of these how many have been successful”?
It does, of course, raise the ethical question of "how is the new EP supposed to learn his trade?". Someone has to take the risk of being his very first patient, and then someone else his second etc. Everyone can make mistakes, I know of at least one that I made in my professional life that potentially put innocents at risk of life and limb (corrected urgently after a very short time). There was a post on the forum some months ago where a very experienced EP had unfortunately caught a nearby nerve with the catheter during an ablation, which had devastating consequences for that patient.
I did not turn down the offer on the basis that the EP was new, in any sense (he may only be 'new to us'). But I agree, that that should be a consideration. It has to be said that some people would put that as the first, most important thing for them. After all, we're talking here about potential life changes. For me, I'm just not ready to concede that AF is affecting me badly enough to take any risk I'm not ready for.
I agree that that there is a moral dilemma here- how indeed does the new EP become proficient if he isn’t trusted? I don’t pretend to have an answer to that question. However, I think that if I were in your position I would opt for the EP with the best track record.
On the question of whether you should have an ablation at all, I would discuss that with a consultant. There is an argument that it is advantageous to have an ablation early on for at least some types of afib. Of course, I don’t know whether this is applicable to your specific afib. By speaking to the consultant (why not see both if you are able) you could weigh up the pros and cons, perhaps get an idea of the likely trajectory of your afib etc.. You could then decide whether an ablation is desirable now, later or at all, in the light of the information they provide.
I have the impression that Blackpool may have the longest waiting lists in the UK and I waited just over a year for an ablation there in 2015, but it must cope with a huge number of patients from much of the North West of England. It also has a very good reputation and when I made enquiries - having been at Wythenshawe originally - it was clearly regarded by everyone I asked as a centre of excellence. And I found it to be so. We can always pay up for private appointments if we feel we need to and then slot back into our health service.
My a-fib started like yours, just random episodes infrequently that usually lasted less than 24 hours. I started taking Magnesium l-threonate and it really helped and prevented new episodes. It worked for almost four years, but about six months ago I started having more of them, and I wonder if it was because I had to have a biopsy and they used lidocaine with epinephrine.
Who knows? It might have happened anyway. It is often stated that AF begets AF, and once you have it, it gradually comes more often.
I'm now taking daily supplements of Magnesium Citrate (400mg) alongside my Cod Liver Oil, Glucosamine Sulphate and Ginkgo Biloba. I tried increasing the dose of the Magnesium, but that affected my digestion too much. Of course, I am also on Apixaban and Bisoprolol, and a lightweight antibiotic for a skin condition. I don't rattle that I know of, yet.
Wow! As a Yank it is amazing to read about these waiting lists. However, I also find it amazing to read how many of you blithly get multiple ablations. I have had AF episodes since I was 30 years old in 1986. I spent years on Digoxin and Quinidine until my cardiologist announced at an appointment that those were terrible drugs and I should no longer take them. He recommended I up my intake of Vitamin C after a study out of Tehran showed it reduced episodes. I did that and had about the same number of episodes that I had while on the Digoxin and Quinidine. Then, in 1998 on the way to the airport I had an attack and detoured to my doctor's office. He gave me a Verapamil and the attack stopped within an hour, so off I went with a prescription for Verapamil to be taken only when I had an attack. Fast forward to 2005 when I had an attack that wouldn't quit and ended up in the hospital. My cardiologist was off, so his partner treated me. He decided to convert me with Flecainide. It worked quickly, so I was discharged from the hospital with a prescription for 100 mg of Flecainide daily. After only a few days it was apparent I could not take it as my heart rate would not go above 37. So, instead of taking it daily I was instructed to take 2 pills only if I went into A Fib. I was told to only go 3 hours before seeking medical attention if it did not convert. Since then, my episodes have depended on my stress level and diet. I can trigger an attack with a high carb meal or with a meal that creates gas. My BP has been running a bit high, but every time they put me on a BP medication, the AF starts up and I have developed blood clots. My doctor is pleased that I can keep the number of A Fib episodes to one every few months by watching my diet. It has also resulted in weight loss and my BP was down 20 points at my last appointment with no medication, so my doctor is happy. I take 20 Mg of Xarelto daily since I was treated for a DVT in June. I seem to tolerate it well and thankfully it did not trigger my AFib. I will stay on this dose for 2 more months and then the dose will be reduced to 10 Mg. The plan is eventually to transition off of it back to aspirin. I am thankful that my cardiologist favors a conservative approach to treatment. We have 2 friends who have undergone ablation, yet both had a recurrence. It turned out in one case to be caused by an ANSAID and after the ablation she went back on them for her arthritis and keeps having A Fib episodes. I try to take as few drugs as possible as I always end up having to treat the side effects. Oh, and several of my doctors think some of my issues with medications stems from having the MTHFR gene mutation that makes it difficult for my body to clear the drugs from my system. My doctor considers ablation as a last resort and I am nowhere near ready for that as I can keep my episodes few and far between, and get rid of them quickly, by more conservative methods.
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Hi Mollybear
When you say that BP medication has triggered AF and you have then developed blood clots, do you mean clots in your heart?
Is your gene mutation the reason you can’t take an anticoagulant permanently?
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The DVT's were in my leg. Unfortunately, the leg has bad circulation from a lymphangiogram that was done many years before. I was allergic to the dye they used and my lymph system shut down, also shutting off my circulation. My Doppler's show multiple sites of calcified DVT's of varying ages. For some reason every time I go on BP meds I end up with a DVT and additional A Fib incidents.
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I forgot to address your question about the gene mutation and the anti-coagulant. Yes, that is part of it. I was on Warfarin back in 2012 for about 10 months and then had such a severe reaction to it that I nearly lost my life. I then was on Aspirin for 3 years with no problems. Here in the US it is also an issue of cost. The Xarelto is very, very expensive. I am on Medicare, so not eligible to use coupons issued by the manufacturer. The cost of this drug will push me into the donut hole and then I will have to pay much, much more for any prescriptions. I am going to have to change my plan starting in January because my plan does not have great coverage for Xarelto. Here in the US we have a $415 deductible on a Medicare Part D plan that has to be paid before the insurance company picks up their portion and I pay my copay. With my only income being Social Security, the cost of the drug is a consideration. The doctor wanted me on Eliquis, but our drug plan pays even less for that, so he said he would go with whatever was cheaper. And with my history I could not go on Warfarin again.
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Thank you for explaining that. I hope you find a way of resolving this difficult funding problem.
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Perhaps funding is another reason why they don't do so many ablations here. Even with Medicare or other health insurance here, there is still usually a Deductible and a copay. The cost of a medical procedure that requires hospitalization can easily top $100,000 and with many plans you have to pay about 20% out of pocket, once the deductible has been met. A few hour Emergency Room visit here for what they thought was a kidney stone, ended up costing over $6,000. At the time I was on my company insurance and the deductible was $6700 so I had to pay the entire cost out of pocket. I got a shot of morphine and an ultrasound and was sent home. We later found it that it was a reaction to Cipro.
I had my third ablation with Dr Chalil last month. He came round to offer me the results when I was in recovery and I cannot remember a word of it! Have an appointment for next month so hopefully all will be well. He has put me back on Flecanaide and bisoprolol though!
Thanks for posting that. Yes, I recognise the problem with immediate post operative consultations. When I had a camera down the throat thing done, I had been sedated. During the procedure, the operator said to himself "well that's unusual", and after he finished I wanted to ask what that was, but I was too 'out of it'. When I asked two weeks later, all was denied.
So, no need to panic either way I think. I went on for 6 years with similar levels of afib to you before finally getting booked in for an ablation in a months time as its been getting gradually more frequent. Certainly I think you did the right thing not agreeing to an ablation in the middle of a party with an ep you didn't know / trust.
It can be a bit worrying reading on here some peoples ablation experience - but remember the people who are still posting on here are those who are still having problems. There are large numbers of people who have successful ablations, forget about afib and never come on here to post again. There is a heavy forum weighting towards those who (unfortunately) struggle more.
Thanks for your thoughts Steven. Yes, I'm happy I made the right decision that day. It would be much better though, if I could simply get to talk it through with my EP properly, but they are always so busy and pressured there is no chance of that. I can email his secretary, but that doesn't really get me any closer. The young chap that called me to offer the quick fix did say he would ask for an appointment for me for a consultation, but he didn't sound confident that it would ever happen.
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if you had any doubt in your mind I think you did the right thing delaying the ablation.
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