At the beginning of January I had an AV node ablation. I did a lot of research before making the decision to have the procedure, during which I read some very negative thoughts as to why you shouldn't have it done. I just wanted to share with you my experience, with a very positive view. I've had AFib for 30 odd years. In the beginning I just one or two episodes a year. Flecainide was the treatment I was given, and it worked really well for many years. The AFib became progressively more troublesome and eventually I was in permanent AFib. Over the last 18 months I’ve had two ablations (16 days after the first I was back in Afib and the second lasted only hours). I’ve had 5 cardio versions which put my heart into rhythm for between 12 days to an hour. My options were to live with it on meds including Amiodarone, or have an AV node ablation, which, after a lot of consideration, research and questions I went for. I'd already had a pacemaker put in last year, so the procedure was simple. I had no pain during or after the procedure and I was home the same day. Recovery was very quick, and I have absolutely no worries about being pacemaker dependent. It is such a relief to no longer feel the AFib and the it has defiantly changed my life. The biggest thing I’ve had to cope with since the procedure is trying to turn around the effects of the stress, worry, depression and inactivity the past 18 months has caused. I am now on a heart rehab program and diet, with good support, in an effort to undo all those months when I was not even able to walk from chair to kitchen. Admittedly having an AV node ablation is a big consideration and maybe not for everyone, but for me it has given me the chance to rebuild my life. I hope this message may be of some help.
Positive thoughts about having an AV ... - Atrial Fibrillati...
Positive thoughts about having an AV node ablation.
Thank you very much for your post it is very interesting.
In your case having the pacemaker already installed must have been very helpful as that part of the procedure you had already come to terms with.
It has been suggested that I have a pacemaker and AV ablation but as I have multiple skin allergies I. have resisted it. I am also very scared of having to rely on something mechanical, to which I I might be allergic, to keep me alive. I know that they can install the pacemaker first and carry out the AV ablation later but it is still daunting for me.
Having said all that your post will be very reassuring to those for whom there is no alternative.
Pete
Hi. Yes pacemaker already in place was good but the pacemaker is always done (or should be done) a few weeks before the AV node ablation. I asked if it was ever rejected and they said they had never know it happen to any of their patients. Occasionally it has to be taken out because of infection but again that is unusual. If you were to consider the procedure and had the pacemaker done a good few months before the Av node I guess you would know if you were allergic to any part of it. It can always be taken out. I also asked if they had had any patients where the pacemaker had failed, they said only one and she hadn't gone back for her checkups so her battery failed. She didn't die, your heart still beats, just very slow, 30 bpm. I suppose it depends on how much the AFib impacts on your life. Certainly making the decision for me was harder than going through the procedure, this time last year I couldn't have agreed to having it, but things changed and I had to come to terms with the fact that my heart preferred being in AFib. I apparently have 10 years left on my battery. 
I am on the waiting list for this but still very nervous and undecided as to whether I will actually go through with it. I have orthostatic hypotension which means I can't stand up for more than a few minutes without feeling nauseous and dizzy so have to sit down again.This makes everything very difficult.Don't know if pace and ablate will cure this.I also have fast PAF and pacemaker won't help this so don't know if this is the best solution in my case.Glad that it has worked well for you.
I haven't heard of Orthostatic hypotension, it sound horrid. I can tell you what I know about pace and ablate....... I wouldn't want to have them done together. I think it's important to let the pacemaker settle in for a few weeks, then there is no danger of the wires getting dislodged and causing you problems. A pacemaker under other circumstances would only kick in if a heart beat dropped below a certain bpm, that would be whatever they have set it at. A pacemaker alone doesn't help a fast heart beat but the AV node ablation probably would, depending on your condition. My understating of it is that after the AV node has been cut the pacemaker takes over and regulates both fast and slow (I think I'm right) because the chamber that's in AFib has been isolated. My heart rate averaged 120-140 bpm before the op. The top left chamber is still flapping around in AFib but I can't feel it and my pulse is regular. The pacemaker keeps me beating at a nice steady pace. First it was set at 80 and now it's been reduced to 60bpm. The pacing clinic sorts all that out. Obviously you must get advice from your consultant and ask as many questions you need to until you are satisfied. I set my phone to record as I'm going into the consultants room. I put it in the top of my open handbag or a pocket (discreetly) then I can listen back to the conversation, that way I don't forget anything. It is a big decision, I hope you are getting some support. If you are in the UK the British Heart foundation are a great help if you have numerous questions.
Thank you so much for your reply.I saw an EP privately and he mentioned pace and ablate right at the end of the consultation with just a brief description of what would happen.He said that he was willing to put me on his NHS list and I could think about while waiting.I thought that I would see him again in his clinic before the procedure but have since learned that the next time I would see him is on the day it will be done.So no opportunity for all the questions I have which is not what I expected.Not happy about this as it is not a decision to make lightly as it is so final.
Hi. I would also feel very unsure about making such a big decision without more consultations and tests. I don’t want to sway you in any way, so these are just my thoughts from the knowledge I’ve gleaned along the way. AV node ablation is known as the last resort and yes, it is final, but can also be life changing depending on your condition. My consultant also said he wouldn’t be seeing me until the day of the procedure, and I was a bit shocked about that like you, (that was after my second failed ablation) but I did see his registrar who explained it all to me, but I still wasn’t convinced. I made the decision a month later because my quality of life was so poor. I was told the procedure can’t fail as the top chamber is isolated, that’s where the pacemaker comes in, but please do get advice on that. My information may have been wrong. As procedures go I was told it carries less risks than even a normal ablation as it’s not so invasive, so although the end result is irreversible the procedure is quite simple. The AV node is very easy to cut and can, during other procedures be damaged meaning they inadvertently do an Av node ablation. Very rarely it has to be done a second time, so if the AFib came back that would be the reason. I had a few ectopic beats from the lower chamber recently, which freaked me out, but they ‘tweaked’ the crystal in my pacemaker and it’s been find since. After sooooo many questions about the pacemaker I am confident that it won’t fail me. What medications have they tried you on? That’s what they first did with me. There was a chance they might have worked, they didn’t unfortunately. Also have you had or been offered ablations to freeze the nerves that cause the electrical activity. I’m guessing you have as those are the two normal and first routes to take (I think anyway). What causes the orthostatic hypotension, is that a condition linked to heart problems? You have a lot of questions to ask so you really need some support. Where do you live, and what are your hospital cardiac units like? I wonder if you should see your GP and ask for a referral to see a cardiologist. Most consultants/doctors can be found via Google or the hospital they work at. That will show their qualifications etc. It helps to know they are specialists in arrhythmias and, as I think you can choose which hospital you go to you can then choose the cardiologist of your choice, (but that may not be the same everywhere). There is usually a team of cardiology nurses in the hospital who are very knowledgeable, so once you’re under a cardiologist you can ring them and ask all the questions. You may be able to do that now as you have already seen the EP. Also, the British Heart Foundation helpline will help and advise you. They have endless patients. Hope that helps a bit. Take care.
Thank you for your reply.One of my problems is intolerance/ sensitivity to most drugs.I am currently struggling with not being able to take an anticoagulant having tried Warfarin,Apixaban and Riveroxaban and had allergic reaction to all of them.Have also been prescribed Ramipril and Amlodipine and had bad side effects so drugs have not been helpful.EP said ablation would be more risky and probably need to be repeated at some stage.I certainly won't be having pace and ablate without researching a lot more.Thank you for your advice.I am in the UK and my nearest hospital is the BHI in Bristol so I could phone the arrhythmia nurses for advice.Hope you continue to improve.
HI. I do hope you get some help and advice soon. It's a very lonely journey without the right support. Good luck and take care.
Great idea about the phone! I usually go on my own to appointmentd,and although I try and take notes,it can be hard to recall exactly what was said! TRIPLE7
When an appointment is so important and you are already stressed it's hard to remember it all. My mind goes blank. If your a bloke though, top of your handbag would be a bit iffy.....!!! a top pocket would work best as the recording will pick up rustles from movement too. I realised when I listened to my recordings, that I talked too much (nervous talk) Next time, apart from questions I let the consultant do the talking..
Given your circumstances my own view is that you definitely did the right thing. I'm not sure why pace and ablate is so frowned upon in general. OK, so it's far from ideal, but it is surely a far better option than feeling knackered for the rest of your life. At least your ventricles - which let's face it do 80% of the pumping - are now beating regularly therefore enabling you to return to something resembling a normal life without feeling like a washing machine on a wash cycle with only a pair of trainers in it! Well done you and all the very best for the future.
Out of interest, where did you get your unsuccessful ablations done and who by?
Thank you for your positive post. I'm sure that this will help many who are feeling uncertain about the procedure.
Can I ask your age? I have also had AF for very many years but have not had to go down this route. I have had 3 ablations which have helped to a degree and 17+ dc cardioversions which in the main do last a good while. I am 73 ....first episode at 48.
Sandra
HI. I’m 68. But felt more like 98 last year. That’s an awful lot of cardio-versions for you to go through. I wasn’t offered another after the last one only lasted 10mins. Where do you live? Perhaps it depends on the consultants and hospitals as to how many they will do…. and the circumstances too I guess. My AFib started in my 30’s. It stayed pretty much the same until 3-4 years ago when the episodes became more frequent and for longer periods of time. 12 months ago, things changed drastically and absolutely nothing helped, meds or procedures. I went from episodes of AFib 4 times a year to persistent then permanent in about 6 weeks. It sounds as though you respond well to the cardio-versions. Hope that continues. 😊
Had my pace and Ablate at 79!
Yes I must admit that I have had a few periods when my quality of life dropped very low. I respond well to cardioversions which is probably why my EP gives the go ahead. They have all been ' emergency' .......meaning that they were normally performed within 24 hrs as opposed to going on a waiting list.
I live in West Sussex and consider myself very lucky to get excellent treatment from my local hospital and EP. At present I am almost 12 months post my last cardioversion which is really surprising . I have put this down to taking magnesium . My EP is prepared to perform ablation no 4 should it be necessary . I am feeling very optimistic and positive that this will not be needed.
Best wishes
Sandra
What a lovely positive message and outcome for you. Great to hear you are now back to living a healthy lifestyle. Enjoy. X
Great to hear the diference it has made for you! You must be very pleased,thank you for sharing your story.Best wishez
Thanks.I too am considering an AV node ablation so it was good to hear something positive.Ive read it doesnt cure your AF you just dont feel it ? Can you feel it ? How ling did you have to wait for the ablation ? Thanks
Hi Jeanette. My AV node was done 5 years ago. I don't regret it and quite honestly never even think about it any more. My heart beats are regular which is a lovely feeling after so many exhausting years of AF.No it doesn't actually cure the AF but the relief from permanent AF is huge. I think I'm right in saying that the chamber is still in AF, but you can't feel it. If my left shoulder is pressed against my pillow, I can sometimes feel the chamber flapping, but it's nothing to worry about.
It's important to be on blood thinners because there is still a slight chance of blood clots. Same as when you're in AF.
So to answer your questions :-
No it doesn't cure it.
No I can't feel it (nor do I worry about it)
I didn't have to wait long for the appointment. I think only a couple of weeks. The waiting lists may be longer now but hopefully not for something like this. (My procedure was done at the Heart and lung hospital in Liverpool)
I really hope you get sorted soon.
Good luck and message if I can help at all.
Xx
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