For those not familiar with my journey so far. AFib diagnosis four years ago. Thought to be due to an inherited heart condition HCM.
Two ablations at BARTs in London, the last one was in May.
AFib returned last week. Damn it.
Saw my consultant today in Taunton and am now on the waiting list for a dual chamber ICD pacemaker. Also pace and ablate.
I have been reading so much in the last four years and thought that I understood quite a lot, but was totally shocked today when told that even pace and ablate wouldn’t cure my AFib.
I don’t have ‘episodes’ when I’m in Afib(always fast AFib) I can only get back to sinus rhythm with a cardioversion.
I need the ICD part incase of more serious arrhythmias in the future.
Thought Pace and ablate was the final answer?
I just don’t understand.
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Slidingdoors99
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That's correct, pace and ablate will not get you out of afib. But what it will do is keep your heart rate controlled, allowing you to get off of some heart rate meds, which often can improve your quality of life.
Have they discussed surgical ablations with you as an alternative to pace and ablate? Sometimes these can help if catheter ablations cannot.
If Barts doesn't do surgical ablations like mini maze or hybrid, you might then aim for a consultation at another facility with a doctor that does.
One such doctor is Steven Hunter, Consultant Cardiothoracic Surgeon at Northern General Hospital, Sheffield. 
Definitely worth looking into surgical ablation as James mentioned to see if you would qualify. The cardiothoracic surgeon mentioned performs it thorascopically.
Definitely look into mini maze before going down the pace and ablate as losing your natural pace maker is irreversible so worth exploring all options before seconding on this. The royal Brompton is your narrate hospital I am aware of doing hybrid/mini maze
I had an Echocardiogram a few weeks back performed privately by an EP from Barts and he told me that a gentleman called Sayeed Assu (I may have misheard/mispelt the last name) was doing a trial and performing hybrid surgical ablations at Barts.
He said that the method of entry was from the front ( not open heart though) so not the same as the ‘minimaze’ performed by Mr Hunter, which is a bilateral approach (from each side).
There is a website, bartsaf which you may find useful for general AF issues and investigations.
Like you, my local EP refused to treat me, so I am on the list to see Mr Hunter in Sheffield to see if I am suitable for his ‘Mini maze’. The proper name is Video Assisted bilateral thoracoscopic epicardial ablation by the way!
Hi, the atria will continue to fibrillate but because they are no longer connected to your ventricles your heart beat will always be regular thanks to the pacemaker. So unless you are one of the unfortunate people who can feel the atria fibrillating you shouldn’t be aware you’re in AF and your heart will no longer be damaged further. Best wishes and please let us know how you get on, we’ll have to have another Coffee #1 meeting!
Considering your history and the possibility of other more dangerous arrhythmias I doubt whether a mini maze would be offered and tbh you would be much safer getting on with the P&A asap, but that is just my personal opinion of course.
Those would be from the ventricles so you won’t feel them after the P&A. I did feel both at once one time - irregular thumps from the ventricles and a whirring sensation higher up - now that was weird 😱
I’m so sorry to read this and also aware we still haven’t had that other coffee! I don’t know where the days go……..
At least you got some answers from cardio in Taunton today, just wish it had been better news for you. We must try to meet up again before Christmas. Meanwhile, take care of yourself. Big hugs 🤗
You may still feel AF after P&A but because your HR and subsequently BP, will be constant instead of fluctuating, your pulse will be steady and many people find that their QOL is improved as a result.
It’s a hard one when options become so limited, comisserations.
Sadly there is no cure for AF. I've had it on and off for about thirty years, but mine reacted well to medication (Flecainide). Now my AF is permanent, but asymptomatic. I take only an anticoagulant because of it.Yours sounds much worse than mine. Others will be able to give better advice.
The atria can pretty much do their own thing and all stays well so long as the ventricles are under control of the PM. Cut off the signals from the atria via the AV node and you can make the ventricles pump at the rate you wish and as regularly as clockwork.
I gather not. Those symptoms come from the ventricles which will be under full control of the PM. I’ve read that we can’t actually feel the atrium at all, in fact, only the pressure waves caused by the valves closing and even then in the circulation nearer the surface where sensory nerves lie.
No - good old evolution has sorted that out, even. If the PM battery runs out, then the heart has a default beat that is too low for doing anything but keeps you alive, or so I have been told and read! I think it is in the 30s and fixed.
The ventricles can also fibrillate; and the usual name for that is a heart attack! Hence those public defibrillator machines here and there. That's somewhat different from what we have.
I often wonder how useful those would be because there are only a few minutes available to get those paddles in use (I believe).
Do you feel that your specialist has given deep enough thought to your issues? I do often wonder how much time they have for each of us. I am thinking of paying privately before my ablation comes up to be sure this is the best way to go.
So sorry to hear that your ablations didn’t help you in the long term. I don’t know much about pace and ablate but quite a few people here have had that procedure and are living a good life. I’m sure they’ll be happy to share their experiences. I hope you find the solution that helps.
I'm as you are....absolutely sick of AF, it completely controls your whole life, its always on your mind even when you're in NSR. I've also had 5 ablations, and awaiting the 6th, I'm not sure it'll work but I'm in the hands of my cardiologist at the Bristol Heart Institute, and can only take their advice.
I did wonder about Pace and Ablate too but they want to try another ablation.
Anyway I wish you all the best for a good outcome.
Thank you for your post. Don’t you mind as well that most people just don’t seem to ‘get it?’
There’s nothing to see and you can describe the feelings but then someone will say ‘Oh yes, my friend has AFib and she didn’t even realise until she went for a general check up!’😱
These forums are filled with those with more typical cardiac issues - many caused by atherosclerosis and other cardiac diseases. Some are temporary caused by viral infections or temporary disease. It gives a false sense of what is normal, or should be done for each individual. My advice is to talk it through with your doctor - although with the complexity of cardiac diseases, I often wonder if all doctors are across it all. It’s why we have different cardiac specialists such as vascular surgeons I and electrophysiologists. It’s complex.
My brother and I have a genetic conduction disorder. We’re not suitable for ablations although they did do one on my brother. He also has a pacemaker/defib. His arrhythmias have ramped up and his device is kicking him a lot. He has arrested twice. If your condition is progressive like ours, it may not be able to be stopped - only slowed.
Im sorry to hear that. However it explains the progression of your condition and the differences in your treatment. Most here don’t have a genetic disorder. I’d imagine that ablation for you would be on a case by case basis. Your doctors advice will be the best advice as they understand the hypertrophy concerns.
Yes, you’re right. I have surgery for a CRT-D implant on 26th February and I don’t mind admitting that I am more than a little scared and incredibly anxious! 😱
Hang in there. I’d be a little anxious too. I understand it’s a straightforward procedure and many people report how much better they feel with one. I’m looking forward to getting mine to be honest.
PS I was refused any ablations locally because of my HCM but Barts in London did give me two- that was kind of them - but it was always on the understanding that two was the most -and if unsuccessful then it would be a dual implant and then an AV node ablation… 🧐
I’m not suitable for ablation as I have an issue with my sodium channels. My EP explained that with a sodium channelopathy, the heart may be relying on alternative pathways of conduction. As you know, ablation is a procedure that scars parts of the heart to block pathways. Ablating even a small area may further reduce the pathways available.
I have progressive cardiac conduction disorder. My electrical issues are more widespread than isolated abnormal conduction circuits that most people have.
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