AV Node ablation for afib and subsequent exercise tolerance

Hi everyone, what a great forum this is. I have learnt so much through readings old posts in the last 24 hours, I feel I have already gained heaps from it!

However, I thought I'd make my own post just so there's an opportunity for some of my more specific questions to be answered if possible.

I am in afib and have been for almost a year. I have already had a LA ablation (2015) which reduced my afib episodes in frequency and duration until this episode. My left atrium is too large for them to attempt a second LA ablation and so I have ended up with an AV Node ablation as my next option. I already have an ICD and appropriate leads so that will just need to be re-programmed to act as a pacemaker as well so the ablation is the only procedure I require. I also have HCM which makes my afib symptoms worse.

I have two main queries ...

1 - From what I have read on here and other forums, as well as being told by my cardiologist, the AV Node ablation will quite likely reduce my current afib symptoms - massive palpitations, out of breath at the slightest bit of exercise (walking up one flight of stairs for example), general fatigue - I feel tired almost all the time regardless of food intake, sleep quality, exercise levels. I am just looking for some (more) confirmation of this from people.

2 - Exercise tolerance. I was quite active prior to this prolonged afib episode. Regular multi day hikes with full packs, regular calesthenics and yoga. Afib has knocked the wind out of me (literally!) and I struggle with just the slightest incline on a hike, just 100 or 200 metres and I need to stop to catch my breath. Yoga is a bit of a struggle too, depending on the pose, again I end up out of breath quite quickly. I appreciate there are no guarantees from the AV Node ablation and I won't get back to 100% again, yet I am looking to hear positive stories from people who have regained a good activity level post procedure.

All responses gratefully received!

Cheers
John


9 Comments

AV Node ablation for Atrial Fibrillation (AF)

by Gemita - 2022-06-10 06:57:44

John, firstly welcome.  I have not had an AV Node ablation, but many members of the Club have, some quite recently.  I did consider one at the time of my dual chamber pacemaker implant in 2018 when I was suffering severe symptoms such as those you describe.  I have paroxysmal AF with a rapid ventricular response rate and episodes at the time of my implant would take my breath away and trigger rapid swings in both blood pressure and heart rate, causing instability and intermittent syncope.

I asked your Question 1 at that time and my EP (electrophysiologist) said the following in relation to my condition (Tachy/Brady Syndrome):

Quote:  An AV Node ablation is not a perfect treatment as you know, since you would still get AF.   However your main symptoms are most likely due to a rapid heart rate and irregularity of your heart beat.  Both of these would be eliminated by the AV Node ablation.  However when out of rhythm, you might still have some minor symptoms but I suspect you would be significantly better and almost certainly would never feel the need to attend hospital during episodes.  

There is a small risk of developing heart failure (HF) following the procedure and you would be watched closely with regular ultrasound scans to check the pumping of your heart.  In the unlikely event that HF were to occur, we would offer you a pacemaker upgrade.  

An AV node ablation is successful first time in the majority of patients.  We do very occasionally have to repeat the procedure but this is very uncommon.  The procedure itself only takes about 20 minutes. Unquote

As you know an AV Node ablation is final and cannot be reversed, so you will be pacemaker dependent for life, but I see you have tried other options to try to stop your AF which has now become persistent/permanent.  Uncontrolled AF needs addressing, since pushing your ventricles too fast with your cardiomyopathy won't be helping at all.  

I have spoken with members here and to other arrhythmia patients in my clinic in the UK.  Many told me they wished they had got their AV Node ablation from the start instead of struggling and failing with meds and multiple ablations.  In my case my pacemaker and cessation of anti arrhythmic meds which had become pro arrhythmic for me, seem to have improved my AF without further intervention, but this is quite unusual.  When I met my EP he did say that I had bradycardia induced arrhythmia, so perhaps that is the reason why I am doing better now with a pacemaker keeping my heart rate steady and higher.  If my arrhythmias worsen in the future however, I will not hesitate to go down the AV Node ablation route, but then I am older than you.

It is a difficult decision but I hope you will come to the right one for you and that you will be able to resume some, if not most of your activities in the very near future.  I see you are a model railway enthusiast;  brother is too.  Good luck John

A-fib experience

by Old male - 2022-06-10 15:24:35

Welcome John.  Most members here have a Pacemaker as the group name implies.  I have an ICD.  Not to answer your specific questions but I have been in permanent afib over the past year.  Sometimes I can notice SOB during exertion and other times not a problem.  On my 2nd ICD since 2014 which has always been set to pace.  First few years it was set at 70 BPM, then revised to 80 BPM.  Also CHF with last reading  about 25 EF.  Tried 3 Cardioversions a few years ago and neither lasted for long.  Have been zapped by the Defibrillator twice....no big deal as it did what it was supposed to do.

I still work as a business owner part time and some days have mild to medium exertion.....gym member also.  Sure your exercise background is a major plus to your continued life.  Good luck with the treatments.

AV Ablation

by AgentX86 - 2022-06-11 00:16:42

HI John, Welcome to the club. 

I had AF since 2007, then had a CABG in 2014.  While they had the hood open, they a Cox maze and clipped my LAA.  The maze took care of the AF but traded it for (atypical) AFL.  I was highly symptomatic to both, so went through the catalog of drugs for the AFL.  My EP discussed a PM with an increase of drugs or an AV ablation. I chose to try the catalog of antiarrhythmics before trying a pacemaker.  Sotalol ended up damaging my SI node so I needed a PM.

Nothing was working.  I'd had three unsuccessful ablations for the atypical AFL in 2017/2018, and drugs were doing real harm (ameoderone damaged my thyroid). Since my SI node was wonky (SSS) I then needed a PM.  Nothing was working on the AFL and I was highly symptomatic (couldn't sleep).  My EP had been discussing it for months so it wasn't a large leap to the A/V ablation.

I've been symptom free since.  Of course my atria are still in flutter and because of the AV ablation they do nothing, or less than nothing.  I felt 100% better by the time I left the recovery room.

The atria don't do a lot anyway.  Their purpose is to aid in filling the ventricles.  At lower than maximum heart rate, they really don't do anything because the ventricles don't need help.

As you know, it's a one-way street.  If it doesn't give you the relief you expect, there is no going back.  The folks over on stopafib.org are really down on AV ablations.  They believe that with one of the "best" EPs (and one in particular is treated as a god), ablations can be successful in the vast majority of cases so AV ablations are dangerous and unnecassary.  IMO, the EP does a lot of LAA isolations which is how he gets the high success rate.  LAA isolations are also quite dangerous too but they seem to turn their back on that.  Your situation is a bit different but you might want him to look at your records and get a second opinion.

All that said, the AV ablation worked for me when nothing else did.  I couldn't have worked any longer because I couldn't sleep.  I worked another four years (just retired). It is a last resort and make sure you treat is as such.

afib node ablation

by pogerm1 - 2022-06-11 01:21:06

A Node ablation is the last result.  Try one more thing, go to the site  AFFIBERS.ORG and tell your story like you have on this site.  Carey is the moderator and his last ablation was his 6th, he went to Dr. Natalie in Texas who is well known for his success's doing ablations for his last Ablation. Carey has been in NSR for a number of years now.  Many people that have posted on the site have had ablations with this doctor and have had sucesses.

Pogerm1

by Gemita - 2022-06-11 02:11:11

Hello, I remember you kindly offered assistance when I first joined this Club.  Hope you are doing well.

My feeling is however good the ablationist, at best AF can only be held for so long, since it is usually not curable.  With that in mind I asked myself why would I want to go through multiple ablations in the hope that one might last?  Of course I accept that in the hands of an experienced EP long periods of respite from AF can be achieved through an ablation.  An ablation is certainly more effective than medication by far but multiple ablations for my several arrhythmias would definitely carry an increased risk too.  

I still feel we have a long way to go to fix the problem of AF which is why pacemakers and AV Node ablations are recommended as a last resort for some of us, and can be good treatment options too, providing long periods of respite.  There are many potential causes and triggers for AF (which is another subject I know) and since we cannot always control all of our triggers all of the time, I am afraid once started, AF is often here to stay, whatever we throw at it.

Although I have heard great things about Natalie in Texas, USA, John lives in New Zealand and I am sure there will be good EPs to consult closer to home if John decides to seek another opinion. 

AV ablation

by pogerm1 - 2022-06-11 16:53:47

The person that I spoke about as having 6 ablations, five of them were done by other doctors, the sixth was done by Dr. Natalie and the person has been in NSR since his ablation with Dr. Natalie.  A lot of doctors that do ablatons usually don't do a lot of ablations, Natalie does a lot of them. I am sure there are good doctors that do Ablations in Australia, you need to ask the doctor how many ablations does he do a year.

Dr. Natalie

by AgentX86 - 2022-06-11 20:14:27

Dr. Natalie is exactly the doctor I was talking about.  He does a lot of LAA isolations, which is a good part of the reason he's so successful.  Many of the unsuccessful ablations have a focus in or near the LAA.  An LAA isolation isn't the safest procedure and and many think an LAA isolation can raise the chance of stroke significantly.  Many EPs won't do them for this reason. A Watchman might help (jury is out) but it's certainly not the norm after any ablation. Do your research before any of these procedures.

 

Thank you so much for all your replies.

by JohnnieNZ - 2022-06-11 21:00:17

I thought I would just expand on a few things to clarify my situation.

My current cardiologist is an EP. I was referred to him prior to my LA ablation in 2015 and have remained as a patient of his ever since. Other people I know who have had afib issues have been referred to him as well. So he is the go-to afib cardiologist/EP for my area of New Zealand. I have never asked him how many ablations he has done but I suspect they are his main procedure.

Having said that, there is another specialist cardiologist/EP who carries out repeat LA ablations (i.e. not the first one). These two EPs have been discussing the feasibility of a second LA ablation and he recommends against it due to increased risk of something going wrong during the procedure plus the reduced chance of success. This second cardiologist/EP has a PhD on atrial fibrillation and flutter and has been published in the New England Journal of Medicine.

Further more, I just so happen to have a friend who is a doctor at a hospital in Germany. They kindly passed on my medical history to a cardiologist at the hospital and the cardiologist concurs that an AV node ablation is the way to go.

In short, I feel I have probably got the best people looking at me in New Zealand plus a second opinion from abroad. I feel that I have done my due diligence at least with standard western medicine!

I have indeed heard of Dr Natalie and if I lived in area near them I am certain I would have been to see them well before now! May be they would like a 'working holiday' in New Zealand!

I have been researching AV node ablations for about 8 months now and I am well aware of the 'no going back' outcome of the procedure but given the thoughts of the three cardiologists I have consulted I am of the conclusion that the AV node ablation is the best option for me. I did wonder if I could cope with afib as a long term condition but it not only affects my physical abilities but consequently affects my mental state too. I now feel that an AV Node ablation is the way forward for me.

Anyways, enough of all of that.

Gemita, thank you for the quote from your EP and the comments from other AV node ablation patients. And good luck to you too and to your brother with his model railway! I am from the UK originally as well - a Somerset boy, born and bred!

Old male, sounds like you are still able to carry on even with permanent afib, good for you. I wish you all the best and keep up the with workouts :-)

AgentX86, great feedback and glad to hear it worked out well for you - yeah, the afib has affected my sleep too, another reason I feel I just can't live with it

Pogerm1 - thank you for the comments, as I say I am unable to see Dr Natalie, but I do feel I have the best people looking after me that I can easily access

Thanks everyone :-)

John
 

AV ablation

by AgentX86 - 2022-06-11 21:20:16

"I did wonder if I could cope with afib as a long term condition but it not only affects my physical abilities but consequently affects my mental state too. I now feel that an AV Node ablation is the way forward for me."

That is all that need be said. You understand the issues and came to an informed decision.  I wish you well and hope you stick around and let us know how it all turns out.  We get people here fairly often who are considering AV ablations so some more people who can give their story would be good. It's a critical decision that must be considered from all sides.  It is often the right answer (it was for me too) but has to be the last option.

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