Does anyone know the normal procedure following an AV Node ablation?
I had this procedure done on 6 October and I have an appointment next Friday at the Pacemaker Clinic for my PM to be re-programed to 70 bpm and then 4 weeks later reduced again to 60 bpm. What I want to know is when and how I can reduce my medication - currently 160mg x 2 daily of Sotolol. I asked before my discharge what would happen with regards to my medication but no one seemed to know and I was told to just keep taking it as usual. I have also phoned and asked the Cardiology/Arrhythmia Nurses but they didn't know the answer and said they would get back to me but haven't. Being able to come off the Sotolol was one of the main reasons I had the procedure but I just seem to be left in the dark and whilst I have got the pacemaker clinic soon I doubt they will deal with my medication because they are technicians and not medics (no disrespect intended). It may be I need to wait a certain time for everything to calm down, or wait until the PM has been at 60 bpm for a couple of weeks - I just wish someone would tell me. Also I would have thought I would have a follow up appointment - OK that might also be after the PM is reduced to 60 bpm, but I'd just like to know! Can anyone enlighten me, please?
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Tricia239
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"Being able to come off the Sotolol was one of the main reasons I had the procedure but I just seem to be left in the dark
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I would think you should be able to, but no one here is qualified to tell you that. Did your ep tell you prior to pace and ablate that you would be able to come off Solotol? In any event, I would insist on speaking to the ep directly to clarify things.
Yes, I was told I ought to be drug free, as long as I don’t feel the AF going on in the upper chambers, if I do then I would be put back on the meds. I think I will wait and see what happens at the Pacemaker Clinic and if I’m still not given any info I will start to rattle cages - or do what I usually do (reluctantly) and pay for a private consultation. It’s bad though that no one seems to know or at least arrange a follow up appointment.
sadly, I have found that if I really want to talk things out without time restrictions, the only way is a private appointment. I will be interested in the outcome. Good luck. X
I had a pacemaker fitted in June 2020 and also take Sotalol. No mention was made of coming off of medication. In fact my dose was increased to 120mg twice a day from 80mg as I was in fast AF when had pacemaker fitted. I am now in persistent AF and my dose has been increased to 160mg twice a day and have just been started on Digoxin as well to see if that helps.
Thanks for your reply, I suspect that although you have had a pacemaker fitted you haven't had an AV node ablation. It may be that your medics have that up their sleeve for the future if the drugs aren't helping.
Sorry I didn't read it properly. You are right if the Digoxin doesn't work they have suggested an AV node ablation but not sure I want to go down that route at the moment.
I totally understand; it took me a very long while to make the decision but my AF attacks were becoming really scary and I would go into tachycardia and felt absolutely dreadful and just didn't know what to do with myself. It meant I was afraid to go away from my home area: I cancelled a planned holiday in the Cotswolds and even visiting friends in other parts of the country really worried me. At least now I don't have that worry and have now booked a holiday for next April in Italy! (fingers crossed) The actual procedure was a breeze and although I did have sedation it didn't seem to do much and I was fully conscious all the time and, apart from being aware of things happening in the groin area, I honestly didn't feel a thing. My recovery so far has been great and I felt I could carry on as normal but I did force myself to take things a bit easy (not something that comes naturally). I did quite a bit of research before making my decision and it seemed that nearly everyone who had had it done was pleased and said they felt as if they had got their life back and their energy. But you have got to feel that the time is right for you, so good luck. Tricia x
Thanks Tricia. I think I am concerned about having the AV node ablation as I have an Abbott pacemaker which has a potential issue with functionality although they say the risk is very low and I do have remote monitoring.
I confess I don't know the difference between pacemakers and the only reassurance I can give you is that if the pacemaker were to fail that wouldn't be curtains for you - apparently the heart would still continue to beat but slowly, I think about 40 bpm, which would mean that you could still function and be able to make a phone call etc., but you wouldn't be able to manage anything very strenuous. I think that was one of the first questions I asked. I do know that sometimes following the AV node ablation they have to add another lead, or even change the pacemaker and so that is something they are obviously prepared for. It's all very clever stuff but also for the likes of us (the patient) scary. Tricia x
I had my pacemaker fitted sept 2022 and the av node ablated dec 2022. I stopped taking all of my medication ( think it was Diltiazem at the time, tried so many), apart from apixaban. Went back to the pm clinic 6weeks later to have it reprogrammed to 60. That didnt make me feel too well and i was getting out of puff, even though my natural resting hr had always been 60bpm. Phoned pm clinic and they asked me back in and reset to 70bpm resting and all has been well since.I asked my ep when he came go talk to me at the bedside just before i went into the theatre about medication and he told me then that i should come off of the Diltiazem and see how things went.
I have to say that ive been very lucky and had a really positive experience and have not looked backed. I dont actually know that I have af now, although i know i have, i just cant feel it.
I do, like you, see my ep privately ( not needed him since av node) and have proceedures on nhs. I dont have medical insurance for my heart anymore since retirement, so self fund.
Yes, that's what I was lead to believe would happen. Just can't believe no one has said anything or that no one appears to know the normal practise. So pleased for you that yours has been so successful and hope that mine will be too. Private Medical insurance is just prohibitive once you reach a certain age, so annoying when you've paid in for donkeys years and then when you really need it............... Thanks for your reply, very encouraging. Tricia x
As I understand it (and I'm not a medic), Your heart will still be in AF after the pace and ablate. So you will still need to be on anti-coagulents but probably not the Sotalol once everything has settled down.
Yes, I'm not worried about the anticoagulant, I expect to remain on that, it's the Sotolol I want to stop - I'm sure I'd feel much better without it, plus I know from the results of my blood tests it is beginning to cause problems.
Hello Tricia, I had a pacemaker and node ablation in 2021 after series of problems with AF. Fainting was the worst experience, since the procedure no problems, 70bpm to 120bpm settings and I am off Bisoprolol. All I take is a blood thinner Apixaban.
Did have one problem when my wrist started to swell, then my whole left arm with veins showing dark blue. Apparantly the vein with the pacemaker lead had some kind of blockage and natures way was to wait till my blood found another route, which it did.
My Cardiologist told me to keep my arm raised to help the process. I did say that walking up the High Street in Weston Super Mare with my arm raised would probably cause people to move to the opposite side.
Hi, thanks for your reply, I'm pleased all is well for you now - that must have been weird keeping your arm raised! Did you have it done at BRI? That's where I had my first ablation under Dr Ed Duncan - I thought he was very good. Sorry I've taken so long to get back to you - I've been zonked by some lurgy that is doing the rounds - just hope I'm OK tomorrow to get to Exeter to have my PM re-set. Take care and enjoy the sea breezes today!
Hi Tricia, I had an AV node ablation in Feb this year I was told by my surgeon to stop taking my beta blocker (Bisoprolol) and Diltiazem immediately and didn't have any problems at all. Im surprised the Arrythmia nurses didn't know about it. I was told to stay on apixaban as ablate and pace doesn't stop AF, it just runs in the background.
hope you get some answers that help or at least find out where you can get information
Like you, I’m amazed that no one has been able to give me an answer - or in fact instruct me. I should have gone with what I feel sure I was told when I had a private consultation with my EP. I’ve just been frightened of doing the wrong thing and causing a problem that perhaps couldn’t be put right. I think I will try and call my EP asap. I tried to email him today but the 2 addresses I tried just boomeranged back. The problem with phoning is that I’ve lost my voice today but hopefully it will be better tomorrow. Thanks for your reply. Tricia x
Maybe it’s worth trying the hospital again. You may have been unlucky with whom you spoke to. I have a devices clinic which I can ring or even the cardiology department. They should be able to put you in touch with someone who can give you answers. Good luck and don’t give up! xx
Thanks, I will try again and certainly won’t give up. Since posting though I have gone down with a horrible lurgy and yesterday I didn’t have a voice at all. It’s a bit better today but I feel worse in myself. Fingers crossed I will be feeling better tomorrow. Xx
I see you posted this a month ago, so hopefully things are much clearer by now.
The same happened to me after AV node ablation stopped Digoxin, but not the Beta Blocker, which was the bad one. I went to see my GP because after ablation I was short of breath, she rang the EP and told me to stop that one also. I’m feeling better now but, as you say, I have to see the technician to set the pm to 70 and then to 60 in the following 4 weeks. Like you, I have to be chasing around the answers…everyone seems to be terribly busy, so patients have to ‘play’ health professionals!!! And I’m in Australia…the lucky country…that it was.
Hi, pleased to hear you are feeling better now. I got more sense from one of the senior nurses and she and I agreed to wean me off the beta blocker as opposed to just stopping it as the Registrar, when asked by the nurse, suggested. I took my final half pill, which was actually a quarter of my original dose, on Sunday evening. I’m still very breathless but perhaps it’s a matter of time, also I guess I need to build up my fitness level, which hasn’t been helped by some horrible lurgy, very nasty cough etc, and not getting out to walk thanks to totally yuck weather! PM due to be set to 60 on Friday and I will mention the breathlessness then but don’t hold out much hope for a resolution then. I will give it a while, try to walk the dog more frequently and try to lose some weight - they don’t seem concerned about my weight but I am; ideally I would like to lose 2 stone but it’s hard because I don’t eat that much, never snack and don’t have a sweet tooth! The joys of getting older - equally though, the privilege of getting older, so mustn’t moan too much. Nice of you to get in touch, keep well and keep improving!
just wondering if your breathlessness on exertion has stopped now. I had av node ablation 30th January and had pm turned down gradually from 90 bpm to finally 60 bpm with rate response on 3 weeks ago and I have got more out of breath on exertion they told me 6 weeks to adjust but I am getting worse and wonder if I need faster pace than 60. I just wonder what your experience has been.
Hi, things are about the same. I have been checked for fluid retention, I’ve had an echocardiogram and a chest x-ray. Apparently all are OK and the Cardiology Nurse has spoken to the consultant who says there is nothing they can do apart from put me on amiodarone. I do not want to go back onto search hefty drugs, besides, which I don’t really see the point. It was pointed out to me that the procedure is only successful for 7 out of 10 people and that I am obviously one of those it doesn’t work for! That said I was told by a consultant, I saw privately prior to the procedure, who told me that NHS consultants can sometimes be somewhat cavalier about setting the Pacemaker, but that he and his team take a lot of care to get it right. I have also read that sometimes and additional lead is required and even on occasions a completely different model of Pacemaker is needed. I am a bit miffed that I have not had a proper face-to-face follow-up with the consultant and that none of these options haven’t even been discussed. I have therefore made an appointment to see the private consultant and that appointment is on Tuesday. Maybe there is nothing that can be done, but I do feel there ought to have been some discussion and I feel as if I have been fobbed off and that no one Really cares. So, hopefully I will have some positive news on Tuesday. I am sorry to hear you are suffering too and will let you know how things go.
We exchanged messages a few days ago and I said I would let you know how my (private) Consultation went. The Consultant I saw was very knowledgeable about pacemakers and as well as his medical qualifications he also has a degree in engineering and apparently he used to design pacemakers and so he knows them inside out. He was quite surprised when he looked at mine and saw how it had been set. There is a 'button' in the program which asks if you want the pacemaker to speed up during exertion/exercise and mine was switched off! There were other tweaks he made which I didn't really understand, but that was obviously one of the main problems. He explained to me that breathless can become a habit, that's not quite the right way to explain it, but I now need to unlearn being breathless and also work on building up my fitness level. I am quite horrified that such a basic error/oversight was made with my settings and even when I questioned, via the Cardiology Nurse why I was so breathless I was told that she had spoken to the Consultant (NHS) and he said there was nothing more they could do for me and they wanted to put me on Amiodarone. There's no way I want to go on that, besides the main reason for having the AV node ablation is to be free of such toxic drugs. So, I don't know whereabouts in the country you live; I am in the South West - so if that is geographically possible for you I'm happy to give you more information.
I have been out walking today and I can't say it's a miracle but I certainly didn't feel that the breathlessness was out of control, which is how I had been feeling. I think I just need to work now on building up my fitness but at least now I feel that is possible, where as before the pacemaker tweaks I just felt like giving up.
I hope this helps you and will be interested to hear how you get on. Perhaps armed with my info you can tell your NHS team and see what they say and if they are prepared, or know enough to make adjustments to your pacemaker. Best wishes, Tricia
Thank you for your information I am sure my pacemaker was set at rate response but they did say it may require tweaking but to allow 6 weeks for pm to adjust to my lifestyle however 3 weeks down the line I feel like I am being beaten up and more breathless than before I have unfortunately just had a cold and chest infection which has not helped my plan would now be to contact pm clinic when my chest infection gone and see what they suggest. When I first had pm inserted 2015 I had to go down the private route to see my present cardiologist and he said I was overpaced and over medicated and turned it all down and I never looked back from that. He decided the ablation would help last November due to high heart rates and ablation would sort this and get me off the digoxine and nebivolol unfortunately he is now head of department and does not do private anymore and ablation was done by one of his team end if January if I cannot get any solution in a timely appointment I will.go private again to see ep who did my procedure. I am glad you are feeling a bit more relaxed about the condition please keep in touch with your updates and I will do the same.
I am now over the chest infection and still feeling out of breath on exertion but not every time I speed up my walking. I am trying to relax more and not expect the breathlessness to take over but sometimes my chest tightens and I feel like I have just run a long way even though I have not. I am thinking of contacting the team this next week to see if they can tweak my pacemaker. I’m wondering if you have seen more of an improvement since you had the rate response turned on and tweaks made ? Have you got a dual lead pacemaker I have read somewhere that sometimes a third lead is sometimes added to allow upper and lower chambers to beat in sync.
Hi Brendon, Sorry to hear you're still breathless despite having recovered from the chest infection. I can't remember whether I mentioned to you that the (private) Consultant told me that breathlessness can become, for want of a better word, a habit and you sort of have to try to unlearn it, which I find difficult to understand, but I think just to keep reassuring yourself that it is all ok now and those sort of positive messages to yourself helps - as will, hopefully, positive experiences, i.e. realising that you have done something and weren't breathless, but you would have been previously. I'm pleased to say I am a lot better and have been for several walks now, including up steep inclines. OK, I'm not speedy, but it really is improving. I too had read about sometimes needing an additional lead, and even sometimes needing a different type of pacemaker altogether. That wasn't mentioned to me though.
I have a friend staying with me at the moment and we are flying off to Italy on Tuesday and 'doing' the Amalfi coast; I still feel a bit anxious about it but an awful lot more confident than I did a couple of weeks ago.
I think the mantra has to be slowly - no matter how far you have to walk, one foot in front of the other and you will get there. Well, that's what I keep telling myself!
Take care and let me know how things go. Best wishes, Tricia
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