After four lots of Cardioversion, two lots of Catheter Ablation and multiple meds, which are either ineffective or make me feel 'strange', I have been listed to have a Cardiac Resynchronisation Therapy Pacemaker fitted, followed by AV Ablation. It's more than a bit scary because, once the AV node has been 'zapped', there is no going back and one is totally dependent on the Pacemaker. Is there anybody out there who has had this procedure and can describe the pros and cons of having it done?
Not my wrist, by the way, but still a very fitting image, eh?
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RaySyl
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The ‘totally dependent’ bit is a myth as your heart would continue to beat very slowly even if (very unlikely) there was a problem with the pacemaker. Most reports I have read say lives were transformed for the better 💜
It’s not totally zapped, you will have enough electrical conduction to give you a very slow HR and function enough for you to call for emergency services, in the VERY unlikely event the PM malfunctioned. Also people have been known to heal and recover function and for the procedure to have to be re-done.
Hi - I just wrote long, comprehensive reply - and then lost it but you can look up my posts from 2018/2019 on this subject and my history from my profile posts or just do a search on ‘AV node ablation’ which will also show/give other experiences.
Briefly - I had the RST PM implanted and worked so well for me that I cancelled the AV node ablation.
Take aways:
It improved QOL but doesn’t stop you feeling AF
It keeps ventricles in sync thus reducing risk of developing heart failure.
It keeps pulse regular because ventricles are paced, thus less symptomatic.
For me - most effective treatment with little or no downside after recovery - 6 weeks of no heavy physical work or lifting left arm above elbow height - which was the most difficult bit because I felt so well I wanted to be outside gardening!
I just went for annual PM check - PM is now pacing ventricles 98% of the time, although I still have ‘good atrial conduction’ which is why I have tachycardia & feel some ectopics sometimes. I may rethink the AV node ablation.
I’ve had 2 recorded short AF episodes since implant in 2018, prior every other day and heading toward persistent AF.
I am monitored through iphone app so at first malfunction - mechanical or physiological I would be called in. Provides good peace of mind for me.
Make sure the person implanting the LV lead is competent and experienced - it requires specialised expertise and experience, not a job for cardiologist which is why I ended up needing a revision so make sure the person YOU choose does the procedure. There was a last minute swop of cardiologist and I was too ignorant to query.
No regrets, despite the revision. All done as day procedures under local anaesthesia and IV paracetamol. You could have light sedation if you request but really not required unless you are very anxious or can’t keep very still.
Hello CDreamer, thank you for this detailed response to my question. This and a conversation I had earlier this evening with a guy who had a CRT pacemaker fitted last year (with AV ablation) has reassured me to some extent. I say to some extent because I guess I would be stupid not to retain some/many doubts about what I regard as a 'drastic' solution to my problems. When the time comes I will discuss the matter of whether I need AV node ablation with my cardiologist, although I get the impression from his letter to me that I can't have one without the other. Interesting! One thing, you say that your QOL was improved but it didn't stop you feeling AF. What do you mean by that? Whatever the results of the procedure(s) my QOL can only improve, I hope. As for the competence of the EP I can't comment. All I can say is that he carried out my last Cardiac Ablation, which lasted for 8 months, and is very empathic. I have a good rapport with him which is helpful in this situation. Thanks, once again. I appreciate the time you spent writing the above.
You can’t have the AV node ablation without first having the RST PM implanted and ensure that is working but you can have the RST PM and then if it works for you, decline the AV node ablation. You cannot demand a treatment but you can refuse one.
All the AV node ablation does is isolate, as you would any electrical circuit, the atria from the ventricles so that the rogue electrical signals are not transmitted down to the ventricles which is the larger, lower part of the heart which pumps oxygenated blood to the rest of the body. After AV node ablation the atria can still carry on doing their own thing which may mean staying in AF but your Heart Rate will be controlled by the device and therefore pulse remain regular, rather than prior to the procedure, when your HR and pulse will be erratic, irregular and often fast.
Question your cardiologist about their experience with implanting RST PM and ask for stats. Ask your GP who they would have implant such a device - do your research. In this matter however empathic and however good a rapport you may have, does not mean they have the expertise and experience to perform the implant - which is very different to a normal pacemaker. If your working relationship is good, they will not mind you questioning, politely, their experience, training and expertise. Does your cardiologist practice at a Centre of Excellence? Would they be the person doing the procedures? Research their training and track record. Ask how many RST they have successfully implanted and what was the outcome of patients? Most good EP’s will keep statistics and be quite open about sharing their experience and statistical outcomes of their patients.
It is a big step and it took me about 6 months to come to a decision, hastened by my AF symptoms and QOL worsening. I also had a long wait to get the implant and always remember the advice someone gave me at the time - get on the waiting list, you can always cancel or delay or change your mind when the time to be called comes. In the meantime keep researching.
I had a regular ICD/pacemaker and AV node ablation over two years ago and my life was immediately transformed for the better. For someone who was feeling permanently ill and dreadful with tachycardia and AF it was a no-brainer. I never give a thought to pacemaker problems - they seem so unlikely compared to possible actual heart problems! Very good luck with everything.
Thank you 'placards' for taking the time to reply to my question and for reassuring me that, as and when I get the call from the hospital, I should go for it. I find the idea of being dependent on a Pacemaker rather scary but recognise that if the alternative is to feel like I do at the moment for the 'duration' there really is no alternative . This morning, for example I was knackered after towelling myself down after having a shower. And as I was bending down to put my shoes on ..... my Fitbit told me that my heart rate was running at over 90bpm!
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