My experience so far of AV Node Ablation

[HatsOn]

Hi - when I was trying to decide whether to have the AV Node ablation, I struggled to find much in the way of positive news so thought I'd post details of my experience.

I just had my two month follow-up. Had an echo which showed my heart was fine no problems with ventricles (I have 2 leads) and a download of my PM which showed two AF episodes since ablation. Though I was aware 'something was happening' both times, symptoms were nothing like my past experiences of AF where I always had to do the ambulance/hospital scenario and where latterly, the episodes had made me feel quite ill. I'd come to the end of the road physically and mentally after 20 years and probably about 30 or more episodes. It's still early days but so far here are some positives - 1) I don't have that daily anxiety of thinking will this be the day I have to go to hospital 2) I don't feel the constant ectopics and tachycardia which plagued me and where I always felt I was moments away from an episode 3) my medication is reduced (10mg daily to 5mg daily of beta blocker).

I already had a PM fitted some 13 years ago so the procedure was straightforward and much quicker (1.15 mins) than the 3 x 5 hour ablations I'd had previously. I had a couple of weeks of feeling tired then I was back to normal except for breathlessness and chest discomfort when walking up an incline. My PM has now been tweaked to allow my rate to keep up with my activity - it showed on the download that I was staying pretty flat at 60 even when running for the bus (yes, I've done that too since the ablation!). So I'll see how that goes. I read somewhere that the key thing with the AVN ablation is to get the rate right for the individual and so I know things may have to be tweaked further.

So if I can live this way with AF - not having to go to hospital, going about my daily business, not taking so many meds (my cardiologist says I may drop further) - my only regret is not doing it sooner.

I hope this helps someone and if anyone has any questions, feel free to ask.

[Finvola]

What a lovely, helpful and positive post about a procedure that is an unknown quantity for many of us who may have to face it.

Thank you for taking the time to share and I wish you well with your new-found freedom of heart and mind.

[HatsOn in reply to Finvola]

Thank you Finvola. I’ll update in a few months with anything of interest B

[Teignfisher in reply to Finvola]

Yes I to have had a pace and ablate procedure 2 years ago and although I am now in permanent AF I can barely feel it only on odd occasions.

So I consider it a great success asI too was very symptomatic always an ambulance job and felt awful.

If AF is making your life intolerable then seriously consider pace and ablate

Good Luck

[HatsOn in reply to Teignfisher]

Isn’t it great to hear so many positive stories about this procedure. Your post has given me real hope for the future going forward.

[CDreamer]

Sounds really positive. It’s good to know that although it may be a last resort - it may also be the way to live with AF if you are very symptomatic and nothing else has helped.

I’ve had the PM implant in preparation for AV node ablation but that alone seems to have done the trick for me as I have only had 1 short, none symptomatic episode since so therefore have decided to hold off having the AV node ablation for now.

Best wishes CD

[HatsOn in reply to CDreamer]

Sounds like a plan. I was five years episode free and meds free following my PM implant in 2006.

[Shcldavies]

Thats well worth reading thank you.

[jeanjeannie50]

Good to read your positive post. The thought of having a pacemaker can be quite daunting and I think you may well have dispelled some of that for others now.

[booboo73]

Thank you so much. This may be on the cards for me at a later date so any positivity helps so much

I was terrified of the possibility of a avn ablation but to be honest the more research I do and posts like yours make it more appealing if needed it the future .... Thank you!

[cbsrbpm]

Thank you for posting this as I think this will be my last option and it’s a very scary thought.

[HatsOn in reply to cbsrbpm]

I was def never having it when my cardio suggested it about five years ago. But he was very patient and always ready to answer my questions. I just had to do something as my last few episodes had me throwing up constantly and feeling just awful. One of the doc I saw in emergency said to me - have it as it will change your life so I put my trust in that statement and my own cardio and jut went for it. You have to do why is right for you and you though but please don’t be scared of having it. It not a cure as we all know but it’s hopefully going to give me my life back.

[IanMK]

My 2nd ablation (not for AF) was carried out 6 months ago with the understanding that my AV node would likely be damaged in the process because of the location of the areas requiring ablation. Although the node was not fully ablated, I now have a 3 lead CRT-P device fitted too. I have to see my cardiologist again shortly to see to what extent my cardiomyopathy and HF have improved. I hope he will then let me come off my meds. I feel back to normal and have no regrets.

[HatsOn in reply to IanMK]

That sounds very positive. Good luck with your follow up appointment. I was a bit nervous about having the AVN ablated as I only have a 2 lead PM (since 2006) but this seems not to be causing any issues at the moment. I asked about a third lead but was told it was too risky. I guess they would do it if issues arise but so far alls well.