I have been meaning for a while to write this post in the hope that it will help those going through the dilemma of whether to take the decision to go through, what is termed, as a final option. The run-up before taking that decision is daunting.
I have had three ablations and exhausted all the different drug combinations to no avail. Each ablation came with a brief respite, and each drug that bought its unpleasant side effects, finally had no effect. I was left feeling ghastly and at 68 wondering if this was indeed my fate. Prof. Schilling gave me the option for a pacemaker with an AV node ablation. He talked it through with me very carefully indeed. Finally at the end of January of this year, I went in and had a two lead pacemaker inserted, but not connected. Again very clear instructions as to what I could and could not do to allow the leads to embed and the wound to heal, a week later the stitches came out. Four weeks later I went in for the AV node to be ablated. I was nervous, but everything was bought into perspective with the 'what if' I was suddenly told, 'sorry you are not suited to this, we cannot continue' - I would be devastated at the quality of life that would be in front of me. The AV node was ablated, the pacemaker connected, paced at 80 and I was allowed to go home. To say that I immediately felt wonderful would be untrue, indeed I felt pretty dreadful, compounded by going down with that rotten chesty 'flu which lasted three weeks - I tell you if all those procedures could survive that hacking cough, it had to be a good omen! Four weeks later I was back to see Prof Schilling to get the all clear, blood tests and the once over. Also the pacemaker rate was dropped to 70. Whether it was that or finally getting over the bug, a couple of days later I felt very well, with no hint of AF, a week later I took courage and flew back to finish my winter in the West Indies, which is where I am writing this from.
So in conclusion, what I would like to say is if your EP has talked to you about having this procedure, do take courage. Quality of life is oh so important, we will all shuffle off this mortal coil at some stage, take it with both hands, it has absolutely changed my life. No, I will possibly never run a half marathon - but I can't say that at any stage of my life did I intend to!
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Annaelizabeth
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Bob, without your positive posts and outlook, I don't think I would have reached here. It makes me realise just how powerful the written word is when people on this forum contribute. No false dawns or hope, just good solid advice and help, all strangely calming, taking away that feeling of being on your own. Thank you.
Yes I think it is a real pity that this ablate-and-pace option is regarded as only a drastic "last chance" procedure. There are a great many people who had this done since 1990 whose symptoms have been completely relieved and have been fine ever since.
Patients with AF quite often have other things wrong with their heart and if they have reduced left ventricular function there is a concern that a pacemaker can make things worse by reducing the eficiency of the heart's contraction, but the new biventricular or CRT pacemakers can largely avoid this problem.
The AV-node ablation technique is relatively simple and quick with a greater than 95% permanent success rate (first go) and almost no complications.
I think it should be considered as the FIRST choice for people with longstanding permanent AF and symptoms due to difficulty in controlling it or side-effects from the necessary medication. This also applies to some of those who have the "brady-tachy syndrome" of AF + sinus node disease, who would benefit from a pacemaker anyway.
If I had persistant AF and a very enlarged left atrium I would personally go straight for ablate-and-pace rather than complex AF ablation with the prospect of multiple procedures, significant complication rates (each time) and no guarantee of long-term success.
I do count myself fortunate that I fell into the slot that this procedure can be done, particularly as I know the AF follows on from a mitral valve replacement which was done over 20 years ago, and is still functioning beautifully.
Thank you to all the replies and good wishes, if these can help someone take the decision to go ahead without fear for the future, much will be achieved.
Purely on a financial note, pacemakers are not inexpensive, however neither are ablations and lifelong drugs. Would, therefore, the NHS be better off encouraging more to have the option of pacemaker and AV node ablation?
An attempt at ablation with a catheter was unsuccessful because I have an enlarged right atrium and it was impossible for the EP to guide the catheter through the OS from the right atrium and thence into the left atrium to effect the ablation. What I have been unable to ascertain is whether ablation of the AV node would have to be carried out via the same route, i.e. by passing a catheter through the right groin and up into the right atrium, and then via the OS into the left atrium, in order to reach the AV node. Does anyone know?
No – for almost all cases, AV node ablation is done from within the right atrium so there is no need to cross over to the left side. This is one of the reasons why the success rate is so high. The other reason is that it is completely obvious if the AV-node is blocked and if it stays so for 10-20 minutes it is unlikely to recover.
Not having to cross to the left side also makes it much safer with practically zero risk of bleeding into the pericardium.
Plus, the benefit is immediate so you don't have to wait for 3 months to know if it has worked, or go on taking antiarrhythmic drugs. And it is permanent so you don't have to worry about the symptome recurring a few years later.
Of course the downside is that you do have to go on taking anticoagulants and you do have to change the pacemaker every 8-10 years when the battery runs down.
Hiiiii that's my next thing last time I had my cadioversion the ep said if I went into af again he said they are Goin to pace and ablate me I've got a icd fitted they are Goin to take that out and fit one with pacemaker on it
Totally agree, I have had three very good years with my pacemaker, it changed my life for the better. By the way Professor Schilling is the leader in the field in this country, simply the best.
I am so happy for you. I was told I was going to have an ablate and pace, I was soooo excited but only to be told it was not any longer an option. So I guess this is as good sit gets. I am very limited in what I can do because of breathlessness. oh I Lie-I can take amiordrone- No, no and no to that! I am going for a second opinion in May. Wish me luck. I am glad you feel good continue to embrace each wonderful day.
Thank you so much for your positive post I had my pacemaker fitted recently and am booked in next Monday for my av node ablation. Feeling very emotional did you find this?
Unexpectedly, yes I did. Apparently it is a very common feeling. My advice is to relax, just go with it. I found that once it was over and I started to pick up, it disappeared - I think it is a very normal reaction to an abnormal situation! I hope everything goes well on Monday.
Hi Annaelizabeth and thank you so much for your story. I have had 5 ablations and still have regular bouts of AF which need hospital attention as my heart goes so fast. I have been offered pace and ablate, but am terrified of it and so struggle on with this dibilitating condition, never knowing when it will strike again. My cardio has told me that if I have it done, I may still feel the atria fibrillating and if I currently have breathlessness problems, then that my continue, so it seemed pointless to have the p/ablate. I have PAF and in between attacks feel quite well. So I still find it a difficult decision and I guess it all has to be weighed up according to our personal situation. Quality of life though is so important, and I think many of us just get used to putting up with this horrible condition. Thankyou again and very best wishes to you.
I hope you can talk to your EP rather than your cardio about it in more depth. We are all different, but if your situation is a possibility, please don't reject it through fear.
Thanks for the post Annaelizabeth it is reassuring as this has been suggested to me as my final option. I am swerving it at the moment but is good to hear positive feedback. Enjoy the West Indies, could do with a bit of sun here 😎
At 60 and having had 5 Cardioversions from June onwards 2017 , yes that’s right one each month. Then 2 Ablations one last November and January just gone, loads of different tablets.
Recently admitted to Hospital because of the AF. Awaitingto see my specialist, the Pace Maker and AV Node Ablationis definitely on the cards.
Had an episode in Hospital this morning, my HR went up to 161.
I found your blog most interesting, as I have had 5 cardioversions, going in tomorrow for another. Along with 2 ablations over the last 6 yrs. The AF is a real nuisance. My AF is such that makes me tired not really noticing it skipping or gaining a half beat, although my shortness of breath has really gotten worse in the last year and a half. My EP is thinking about having me do a stress test, for whats worth, as I already told him that wont work since I have a lame foot. So he raddled on about a radioactive test, so my first thought was all I need to be doing is glowing in the dark HA!
My EP claims he`s tried all the AF meds available and consistently has me on Amiodarone. So I was in 3 weeks ago for a checkup only to find out I was in AF again. EP increased my dosage to 400 mg. per day along with putting me on Eliquis.
Enough said I started rambling, I actually started this conversation to tell you I have found your blog very interesting. I wish you well with your new pacemaker and many many years of quality of life doing the things you want
Thank you soooo much for posting this. My husband had the same and we are back in Dpsin and recovering well like you. Good luck to you my friend or should I say amigo 👍
Automatic mode-switching is needed in pacemakers when you have paroxysmal (on and off) AF and AV block (either naturally or after AV node ablation). It means that when you are not in AF the pacemaker synchronises the ventricular beat with the natural atrial beat, but when the atrium goes into fibrillation (or flutter or tachycardia) the pacemaker does not try to synchronise the ventricular beats to it, but paces the ventrical at a normal rate.
But if you do not have heart block the AV node tries to syncronise the ventricles to the fibrillating atrium, causing the typical irregular rhythm of AF
As you say "the supra ventricular tachy arrhythmia would carry on unabated in the atria just not transmit the rate to the ventricle" – this is why you may still need anticoagulation even if you can't feel the AF.
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