Waiting for AV node ablation panic!!

Hi ,

This is my first post.

Briefly my background is that I am 64 now. In my twenties I was a first category semi pro bike rider.

I started with paroxysmal AF in 1990

AF later became permanent, over the last 30 years I have tried all the drugs available and also had 5 ablutions to try and cure the AF . The last ablation got me back in sinus rhythm for nearly 2 years then it dropped out again into AF.

Normal life in AF I can manage OK but I have nil excercise tolerance and a constant general feeling of no energy.

My EP has offered me the AV node ablation and a breathing response Boston scientific pacemaker.

I had the pacemaker fitted on the 15th Jan this year. On the same day as the initial surgery the atrial lead dropped out and they had to redo the procedure.

I am now waiting for a pacemaker check in 6 weeks to ensure all the leads are secure before they carry out the AV node ablation.

My EP Consultant is confident I will be able to carry out vigorous cycling after the AV node ablation.

 

I am really worried that having already experienced a lead detachment this could happen again after the AV node ablation!! 

What happens then??

I would greatly appreciate any comments and particularly anyone who has managed to compete at a decent level of cycling after the AV node ablation.

My heart otherwise is very healthy.

 

Many thanks ,

Chris


13 Comments

Good luck

by Gemita - 2020-01-27 17:38:13

Hi Chris555,

Quite a history and no one can accuse you of not trying to rid yourself of AF.  What a true monster it is and let us hope a cure can be found one day.

I was offered an AV node ablation for my arrhythmias a couple years ago but decided to try pacemaker with rate control meds first.  I also suffered from bradycardia, pausing and syncope.  I have to say my symptoms are generally less troublesome now and my AF better controlled so I am leaving well alone for moment.

I have not had a regular ablation and quite frankly if things worsened I would prefer to go down AV Node route.  It is final yes, but a simpler procedure, taking I believe maximum of 30 mins and less invasive than regular ablation.  The chaos of my arrhythmias could then remain in the atria, allowing me to get on with my life - that is the theory.  I really don’t feel ready to go down the regular ablation route and have ablation after ablation in the hope that my AF can be tamed.  I really don't have confidence that it can.  There are many ways of controlling AF and AV node ablation is just one option and a good option for the right candidate.

When I was considering AV Node ablation I too was concerned about what would happen if my pacemaker failed ?  I was reassured that most of us would have an escape rhythm of around 35 bpm following AV Node ablation (not much I know but enough to sustain life until help arrived). Additionally I was told pacemakers were incredibly reliable today and failure highly unlikely.

I really wish you well. I would be guided by your doctors and have confidence that your ability to exercise after an AV Node ablation will be enhanced.  Your AF seems to be holding you back.

AV node ablation

by vitdoc - 2020-01-27 19:53:59

When  you ablate the AV node you become 100% pacemaker dependent.  There is an escape rhythm which means that the ventricles will contract on their own if they don't get any impulses to contract.  However some people have no significant escape rhythm so that if there is no pacer impulse there is no heartbeat.  I am in that catagory.  So until the AV node is ablated and there is no impulse from the atria you don't know how the ventricles will behave.  In any event pacemakers are very reliable so the chance of a problem causing your heart to stop is still very remote.  I had AV block due to surgery for an aortic aneurysm and aortic valve replacement.  Been on a pacer for almost 14 years.   Suggest if possible getting a bi ventricular pacer.  The usual one is just pacing the right ventricle directly.  A biventricular has wires to both the right and left.  It is more physiological.  However unless you are in heart failure there is a reluctance to do biventricular pacing even though it is better.  There is even some thought that chronic pacing of the right ventricle alone may lead to heart problems.  Talk to the electrophysiologist.  

AV Node Ablation

by AgentX86 - 2020-01-27 23:20:28

I've had an AV node and His bundle ablation about two years ago.  I had both the ablation and pacemaker implant at the same time (and I do mean same time - two EPs, one working at each end).

I started out with AF in 2007 and after a cardioversion, was good until 2014, when all hell broke loose.  AF reared its ugly head and while they were dealing with that, found that I had four blockages, some 100%, and two not stentable.  Off the the OR for a CABG, for me.  While they had the hood open, the clipped my LAA and did a Maze procedure.  The Maze procedure failed, leaving me in permanent atypical flutter.  After two years I had three (failed) ablations in eighteen months and an AV/His ablation a month after the last.  I was having asystoles, so needed a pacemaker in any case and given my history of extremely symptomatic AF/AFL, it wasn't much of a stretch for me to go with an AV node ablation and be PM dependent.  I couldn't live with th eflutter any more and the drugs were killing me.  I do feel your pain.

That said, before anyone has an AV node ablation, you must be clear in your heart that there is no other choice.  It is the solution of last resort, you've exhausted every other alternative, and just can't live the way you are.  There is no going back and being PM dependent isn't a great feeling.  Most get freaked out about having a PM in the first place.  Living with the knowledge that your very life depends on that box would push them over the wall.  I was at the point that I simpy had to fix the flutter.  You must be too, in your heart, to make that choice.  You do have to go into this with eyes wide open.

As pointed out above, most do have some sort of ventricular escape rhythm but it's not unusual that it just doesn't exist.  You have two examples right here (vitdoc and myself).

He's also right that you should insist on a CRT (biventricular) pacemaker, though I believe it's SOP, now, for AV node ablatees (I have one and didn't know enough to ask). If you're in permanent AF/AFL you'll not have an atrial lead and will always be in AV dyssynchrony.  The atria give about a 20% efficiency kick to the ventricles, so you lose that much capacity  (more, actually because the atria will fight the ventricles).  An otherwise healthy heart as plenty of spare capacity to live a perfectly normal life, however missing that 20%, athletes will suffer a similar performance degradion. That's the way it is.

I don't know if it's just me (I had a slow AV node) or if it's SOP but my PM is set to a maximum heart rate of 130bpm and my EP isn't about to increase it.  That would make many here quite upset.  Again, it's enough to have a good life but it's something to consider if you're athletic.

Gemita, you really shouldn't even consider an AV node ablation until you've given a top-notch EP at least a couple of attempts at a normal ablation.  An AV node ablation really shouldn't be considered unless the lesser ablations have failed.  It matters who does your ablations, too.  It's not something that you should allow just any EP to do.  Your EP should have done a couple of hundred ablations, at least, before you consider him.  There is a huge difference between them.  It's really an art. n AV node ablation is not less invasive, though perhaps shorter.  It need not be, however.  They're very similar operations and have the same sort of risks (modulo pacemaker dependence). Neither are a big deal for 995 of the patients.  They only used local anesthetic for most of mine.  For one they used a twilight drug (not sure which one) but didn't realize that I was awake when they did a cardioversion.  I think I called their ancestors rather unnice names and put a hex on all progeny.

BTW, I was 65 when I had the AV node ablation.

Advice thanks

by Chris555 - 2020-01-27 23:55:17

Thanks Guys for replies. I live in the UK and our “NICE” guidelines (NHS standards of practise ) will not allow the EP to use a bi ventricular pacer unless I am in heart failure!! So it appears I have to wait until the single ventricle pacing creates some problems and only then will they be allowed to swap the box and add another lead to the other ventricle!

I am really in a corner with this, my AF is quite slow normally if I live a sedate life and not too intrusive. However if I try and exercise it feels like I have several fish in my chest flapping around and I have no power at all.

What to do??

Damn this AF!

Yes damn AF

by Gemita - 2020-01-28 03:13:13

I hear you and plenty of others do too.  What to do with AF and other arrhythmias when all we want is a quiet life (or active in your case) !   Quiet it definitely isn’t.

I feel there is no right or wrong way to proceed.  AF is not curable although some do have good control after an ablation for long periods but not in your case.  We have to do what we feel is right for us at the time.  You have tried meds, ablation and still you are troubled by the fish flopping in your chest as you try to exert yourself.  A decision has to be made because sitting on the fence isn’t an option any more.

When I was considering AV Node ablation my EP felt it was the in and out nature of my AF and the frequency of this occurring that was really so destabilising and he mentioned that an AV node would help stabilise me since he felt I would not feel my rhythm disturbances quite so acutely and my pacemaker would pace me at a nice steady rate.  I have AF with a rapid ventricular response rate and my rates can quickly get beyond comfortable, but things seem to have settled down nicely with my pacemaker set at 70 bpm and I am glad I made the decision to wait.  I feel I am being paced out of my slow ectopics and this is helping prevent these arrhythmias from slipping and deteriorating into AF, Flutter etc. 

You could perhaps always delay your AV Node ablation and experiment with pacemaker settings first to see whether you can improve your exercise tolerance ?  Just a thought.  You might be pleasantly surprised.  I am also in UK and attend a London hospital

 

the last resort

by Violet West - 2020-01-28 12:02:25

I, too, had a similar history of progressive AFIB, drugs, cardioversions, and ablations.  Finally, the "last resort"- AV Node Ablation and CRT pacemaker.  

Finally, it was a no-brainer, to prevent heart failure.  Worked for me rather miraculously.  I can't speak for vigorous exercise, since I exercise moderately, but it has restored my life and health to a great degree.

I can't believe that after 5 ablations, the NHS won't let you get a CRT dual lead PM.  I think I would appeal/press for that.  

Edit:  I am convinced (tho' may be wrong) that the 100% pacing is the way to go.  I see so many people on here and elsewhere that have had nothing but problems with other types of PMs, but mine just keeps ticking along.  

Hi Violet,

by AgentX86 - 2020-01-28 14:10:26

Could you expand on you edit some? I don't really get what you're saying here. The rest I understand and completely agree with. Big step. It has to be made with eyes wide open.

impression

by Violet West - 2020-01-28 17:49:01

Well, it's just an impression I've received from reading people's experiences.  I don't want to state this definitively, since I am a sample of one. 

It seems like people who are pacemaker dependent (meaning the PM is pacing all the time, as in the case of an AV ablation) have fewer problems with symptoms.   My symptoms were directly related to AFIB/Aflutter.  Lots of people have PMs for treatment of other cardiac problems, which I don't know much about, and their PMs react differently. 

Violet

by Gemita - 2020-01-28 18:19:48

So pleased you are having freedom from symptoms following AV Node ablation.  That is really reassuring.  I know it is a last resort after everything else has been tried, but it is always good to hear that there may be some light at the end of the tunnel after all our labours. I hope you continue to do well.

Can you still feel a fluttering/fibrillating feeling in your upper chambers or are you totally unaware of your arrhythmias Violet ?  I presume your ventricles are steadily paced and that makes you feel better ?  Do you have any symptoms at all from your arrhythmias ?  Many thanks

@Gemita

by Violet West - 2020-01-28 21:27:07

Nope.  Occasional fatigue only; otherwise no symptoms at all (now year and a half after PM).  Truly a miracle, as I was nearly disabled prior to implantation. 

Symptoms form AV ablation

by AgentX86 - 2020-01-28 23:06:10

I don't have anything serious either.  At first I had problems with bigeminal PVCs.  Awful but it was corrected pretty quickly with a rate increase and making sure I keep hydrated while exercising.  Perhaps the magnesim helps too. I also have some problem with stairs but walking is no problem at all.  I walk a lot.

No, I can't sense my flutter anymore, though I'm still in permanent flutter.  Even with the LAA clipped and a AV node ablation, I'll be on anticoagulants and metoprolol for life.

Violet and AgentX86

by Gemita - 2020-01-29 06:08:39

Thank you both.  That is what would really worry me to take out the AV node and then still experience arrhythmia symptoms.  And of course AgentX86, I am not considering this ablation while I have everything so nicely under control for the first time in years.  It is just helpful to hear from others what I might expect to happen after such a procedure.  I realise I would have to stay on anticoagulants but hopefully I could stop or reduce dose of beta blocker or get off any other arrhythmia meds I may need to take in the future.

Sounds good both of you.  I love walking too - but find stairs a challenge

AV Node ablation

by marie54 - 2020-02-08 16:23:31

Just joined this group.  I just had an AV Node ablation two days ago.  I did have a Dual Chamber ICD until 2 days ago. I now have a biventricular ICD with 100% pacer dependent. Had Mitral Valve repair in 2009 for a valve "falling down" causing 4+ regurgitation. Afib was first symptom. It improved after repair until around 2016. Then the A fib reared its ugly head. Had 3 ablations, 2 cardioversions, and many different meds.  Normal low BP has been a severe limitating factor. Tried numerous, but BP 70/40.  Afib has caused me to have heart failure. EF 35%  I am nervous now that I am 100% dependent. Have read it is rare for pacemaker to fail. The incision site is very sore and a bit swollen. Same as when I was in the hospital.  Tikosyn discontinued immediately and Metoprolol succinate decrease from 50mg three times a day to 12.5 once a day. Did your EF improve? How long did it take. How about your exercise tolerance after procedure? Thanks in advance.

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