Av Node Abltion

[Fishpie37]

Hello everyone, I have had heart arrhythmia problems for many years and have had many treatments for this including 4 ablations, but now my Electrophysiologist is saying I can't have anymore Ablations due to to much scar tissue in my heart. Now he is saying my only option is a AV Node ablation which I am reluctant to have because of relying on your pacemaker and there is no guarantee it will work.Is there anyone who has had this procedure done and give some feed back.

[BlueJRW]

Hi Fishpie37, I've had one "standard" ablation treatment which worked for a while and I'm having a 2nd treatment in July. They have spoken to me about AV node ablation and like you I'm apprehensive about going down that road as I see my CRT-D as a backup to my heart - not the main control system. I hope whatever route you take works out well for you and will be keeping an eye open for future updates.

[Fishpie37 in reply to BlueJRW]

Hi BlueJRW, I have had 4 ablations but unfortunately they only worked for a me for a short period of time one of them lasted me for 2 years but then the Arrhythmia came back. The problem with the AV node ablation is once the AV node as been Ablated there is no going back and you are relying on your pacemaker all the time, like all procedures there is no guarantee it will work which I think is a bit of a gamble, hope all goes well with your next Ablation.

[paintbook]

Hello FIshpie 37, I am in a similar situation to you,. have had Paroxysmal A Fib for a long time. Had no ablations, but after the standard ,these days long wait. I now have a pacemaker ( was going to have a CRTP but at very last minute it was changed to pacemaker- don't know why. ) and when it has been checked in a few weeks I am supposed to have the AV Node Ablation. I find the thought of this as extremely scary, makes me very anxious when I don't suffer normally from anxiety. I asked the other day if anyone else had experience of this, I just got one negative reply which made me feel worse.

But I googled '"BHF, pacemaker, AV Node Ablation" and there were many comments over the past year or so and they were helpful and so many were positive replies, they made me feel feel much better about it all.

The trouble is, what other option is there?- have not been told of any alternative, It is all very complicated and no one to talk it over with, who can explain in simple terms what the implications are, what the success rate is and give some reassurance ; instead of me being scared and losing confidence.

But I am making myself have faith in the pacemaker, they have a good record for reliability. Good luck to you, I and others will understand how you feel., let us know how it all goes.

[Fishpie37 in reply to paintbook]

Hi Paintbook, yes this is very different times and trying to make the right decisions is difficult, like you I would like to hear from patients who has had the AV node Ablation and tell me how good it has been for them. Hope all goes well for you.

[Deejay62]

Hi I had a pace and ablate years ago because my arrhythmia was coming out of my AVnode. Like you I had many ablations before that. I had a CRT-P device fitted, 3 Leeds, because of heart failure caused by dilated Cardiomyopathy, then a month later I had the AVnode ablation. I was always awake throughout both procedures. More than 5 years ago I had a device upgrade to CRT-D as my battery was running low after 8 yrs.

It’s a decision only you can make. We’re all different.

All the best

[Fishpie37 in reply to Deejay62]

Hi Deejay, thank you for your reply, it is much appreciated. Lots of thing to think about.

[Hannah-Hay]

like you when pacemaker/ICD & AV Node ablation was offered as the only solution I was terrified at the thought of being totally reliant on a piece of technology to keep me alive. I sought opinions from others on here but couldn’t find anyone who had had it done. That was in 2020. After being so breathless & crawling up the stairs on all fours puffing & blowing I thought I had better take up the offer. I was still hesitating when it came to signing consent form but eventually went for it. I had the pacemaker fitted in Sep 2020 & in November had the AV Node ablation. In these 2 intervening months I didn’t feel much better & was very disappointed. I said as much to my Cardiologist who said I wouldn’t feel the full benefit until I had had the AV Node ablation. I felt really good after I can almost run up the stairs now & I don’t feel any atrial fibrillation although my Cardiologist says it is still there so still have to take blood thinners. You gave to be very careful after the pacemaker is inserted not to raise the arm above your head on the side where the pacemaker is for about a month to allow the leads to settle & not become detached. Also can’t drive for a month & for sone people I have read it can be 3 months. I am finding more people who have had the procedure done & are commenting. You have to advise DVLA. The wound all healed very quickly & nicely - you have to be careful not to get it infected. That’s like with any wound of course. I was fine. As there is not much flesh in the chest area where the device is fitted it is raised up under the skin & visible but with clothes on people don’t see it. You have to avoid magnetic fields so no going through airport or sea port scanners. I always point to my pacemaker site & say pacemaker & am directed to the side not through it for a pat down. You can’t have MRI scans & mustn’t loiter in shop/ premises security gates just nip through. Dentist hygienist’s use new sonic cleaning measures & for ICD patients have to use the old fashioned cleaning method of ‘scratching & scraping!’ Whenever I have any hospital procedure I always make sure they know I have a pacemaker/defibrillator. I hope I have covered everything but if you need any further help just ask. I know how worried I was before I had mine fitted. I go away a lot & am very active & it has helped me no end. Do sometimes think the way technology is advancing one day someone might press a button somewhere & all those with a pacemaker/defibrilators will drop down dead!!!!! Oh yes nearly forgot you don’t get the battery recharged. You have annual checks after the initial one a month for 3 months where they adjust the pacing rate gradually. you will be told how much battery you still have & when time comes the whole device is replaced but the leads are left in place just rejoined to the new pacemaker. I was told 8 years mine would normally last but as I am paced all the time it would be about 5. Have yet to have a replacement. Hope my experience helps you & anyone else with the same dilemma.

[Fishpie37 in reply to Hannah-Hay]

Hi Hannah, thank you for your reply, it is much appreciated, Lots of things to think about.

[Hannah-Hay in reply to Fishpie37]

I know. It’s not easy is it. Good luck

[Fishpie37]

Thank you fir your help.