Pace and Ablate v Medication

[Nannysue1]

Has anyone had a pace and ablate procedure for permanent AF or been offered one.? Any views on this?.

[CDreamer]

I had the Pacemaker implanted in preparation. I wasn’t in persistent AF but I was going that way with very symptomatic Paroxymal AF about every other day. I can’t take any heart rate control drugs so the concern for me was that without my HR was too high, for too long + the symptoms made functioning difficult.

It’s quite a decision to have the AV node ablated and I hesitated at that, as it turned out I felt so much better after the PM was implanted I cancelled the second part of the procedure.

Since the pacemaker was implanted I had 2 very short episodes of AF when I had an infection so for me, the pacemaker alone worked like magic, though it wasn’t without some problems in the early days.

The point about Pace and Ablate is that it won’t stop the AF for everyone but it will control your heart rate, you will have a regular pulse and hopefully, be much less symptomatic. As with everything, we all react differently and it does depend upon your personal circumstances.

Like all treatments for AF it is primarily to improve quality of life.

[Nannysue1 in reply to CDreamer]

Thanks for your reply and yes a big decision to have the AV node ablation, though I wasnt aware that you could have that type of pacemaker without it?. Something else that I need to discuss with my EP.

[CDreamer in reply to Nannysue1]

What type of Pacemaker? Do you refer to Re-synchronisation Therapy?

I consented to Pace and Ablate, had the PM implanted, benefitted so much from it that I cancelled the AV node ablation - which is always done 6 weeks later to ensure the bedding down of the PM and getting the settings checked and working for you. sounds like Bantam had a similar experience.

[Nannysue1 in reply to CDreamer]

Yes, I'm going to query this with my EP.

[1Chick in reply to Nannysue1]

I had the av node ablation in November, stopped my afib and have felt like a new man ever since. I do use a bipap machine nightly and have felt better than I have in the last two years!! 66yo

[Nannysue1 in reply to 1Chick]

Thankyou for your reply, that's interesting to hear, especially as we're the same age.

[bantam12]

I had a pacemaker fitted with a view to going on to ablation but the pacemaker allowed me to take the meds I couldn't before so ablation was put on hold. I do still get SVT and quite bothersome ectopics but I'm managing. I may need the ablation at some stage but I'm fine with that.

[Nannysue1 in reply to bantam12]

Thankyou for your reply. Somebody else who has had the pacemaker without ablation, this hasn't been mentioned as a possibility to me.

[BobD Volunteer in reply to Nannysue1]

A normal pacemaker will not stop AF be warned. There are more that one type of PM controlling either one or both chambers I understand. If going for P and A then the dual type will be used which as CD has explained did help her situation but that is not guaranteed.

[CDreamer in reply to bantam12]

Just checking - do you mean PV ablation for AF or the AV node ablation?

[Nannysue1 in reply to CDreamer]

I've been offered a pace and ablate for persistent AF. As I understand this ,it is a pacemaker, followed 6weeks later by an AV node ablation, thus making you totally dependent on the pacemaker?

[etheral in reply to Nannysue1]

You are correct.. An AV node ablation would leave you completely dependent on the PM. The intrinsic ventricular rate is about 30.

[bantam12 in reply to CDreamer]

Originally ablation for AF which I refused so then PM and AV node ablation was considered.

[Nannysue1 in reply to bantam12]

I'm not a good candidate for ablation as I also have a cardiomyopathy. Success rate is pretty low, even from a top Cardiologist/EP at St Barts pont of view. It's the AV node ablation which is such a big decision to make.

[Canada01]

Hi Like you i have been offered pace and ablate i am not sure what to decide yet but will need to very soon as ablation x2 and meds not working if i could just have a pacemaker and no ablate then i may feel better but not sure my Ep would agree

[Nannysue1 in reply to Canada01]

Yes I would feel much happier with just the pacemaker.

[BobD Volunteer in reply to Nannysue1]

Is this because you think you would die if the PM failed? You wouldn't! Your hreat rate may be extremely low but it will carry on working even if you are very weak. All heart cells have the ability to beat on their own without signals.

[Nannysue1 in reply to BobD]

Yes I've looked at this and read the same but it's still a scary thought being entirely reliant on a device . Much food for thought. Thanks very much for your input, so helpful to hear peoples views, although I'm aware that ultimately, it's my decision to make with my EP's advice.

[Canada01 in reply to BobD]

if that is true Bob then i would be happy to go for it but Ep intimated that my heart would be entirely dependant on pm after ablate

[BobD Volunteer in reply to Canada01]

Overly simple explaination from you EP. You probably would not be able to function but you wouldn't die. Lets say you are dependednt for normal life.

[Canada01 in reply to BobD]

Thanks Bob

[ETFCfan in reply to BobD]

Thanks for explaining that Bob, that’s exactly what I thought that if the pacemaker failed then so would I! I’m in permanent AF and this is the next step for me, you’ve put my mind at rest.

[CDreamer in reply to Nannysue1]

The trouble with having only the PM if the AF persists there would be absolutely no benefit for you.

I am much more confident now about having an AV node ablation, should the AF return, which more than likely it will at some point.

[Nannysue1 in reply to CDreamer]

From what I understand, the AF doesn't go away and you remain in AF but the pacemaker controls the rate?.

[CDreamer in reply to Nannysue1]

Exactly - that means your pulse will be regular which should result in your heart pumping oxygenated blood more effectively to your body.

[CDreamer in reply to Nannysue1]

The PM controls the ventricles - the lower part of the heart which is the big pump and leaves the atria to do it’s own thing but the AV node ablation cuts the connection between the atria and ventricles - the AV node - is severed so the irregular and fast (or slow) rhythm & rate don’t get transferred to the ventricles.

[Nannysue1 in reply to CDreamer]

Yes that's how I understand it.

[Canada01 in reply to Nannysue1]

Just to let you know I decided to have PM and i am now on the list, this is after another bad symptomatic AF episode x

[Nannysue1 in reply to Canada01]

Sorry to hear about your recent episode. Keep in touch and let me know the progress. I've now been offered ablation but have low odds of success 40-50% with first one and 60-70% with a second due to other problems with my heart. I was referred by my EP to a Professor who specialises in cardiomyopathy as well as being an EP. and would like to give it a try first. Hes going to do it together with my EP, so I'm going to give it a bash. No date yet but will let you know how it goes.

[Nannysue1 in reply to Canada01]

Meant also to say that I know how difficult the decision to have the pace and ablate is , so am wishing you well with that. From what some others on here have said, its maybe not as scary as we think. It will be the next step for me if the ablation doesn't work and I'm scared enough at the thought of them!. Take care

[Canada01 in reply to Nannysue1]

Thank u I could have had a 3rd ablation but only given 60% chance so after chat with my EP it seems I dont have any other alternatives as tried all the meds and none of them work. I have to have a heart echo as he said i may need a Biventricular PM if my left ventrical has been damaged by AF. I want to be able to make plans and do stuff with my grand kids and travel to see my family (when i can) they are used to me being active but the episodes are really debilitating. Hope it goes well with your ablation i will let you know how my journey goes. take care x

[RaySyl]

Thanks Nannysue1 for initiating this thread . I am up for Pace ands Ablate in June (all being well in the NHS) and was worried, initially, about the Ablate part - really drastic - but having read around this topic, on this site and elsewhere, there is nothing to worry about. If the procedures result in me getting at least some of my old 'oomph' back then it will be worth it - whatever the risk. For me it's TINA - there is no alternative!

[Nannysue1 in reply to RaySyl]

I hope all goes well for you. I haven't been given a date but told it will be in around 3 months, so maybe June as well. I'm still teetering on whether to go ahead with it though. Good luck Tina

[Betty57]

I had the pacemaker fitted in sept last year and the ablation 4 weeks later , for me they just could not control my heart rate at all , I had so many meds , cardio versions and ablation so , it was suggested this was my best option . For me it was the best thing I have done , I have has no issues with having this and my life is back to near normal . I walk every day .15.29 miles yesterday, so I’m happy with that ...

[Teddy66]

Hi Nannysue

I have Cardiomyopathy and had a AV

Node ablation 2 years ago due to permanent AF and for me it was the best decision with constantly being in and out of hospital with symptoms and 3 failed ablations and 11 cardioversions.

I already had a bivent pacer so it was quite a simple operation.

Good Luck Tina.

[Nannysue1 in reply to Teddy66]

Thankyou for your reply, it helps to hear from somebody who has similar problems and has a positive response. Has it made you feel back to normal? And is there anything that you find you cant do now?.

[Teddy66]

Well I was very symptomatic probably because of my cardiomyopathy.

I could hardly walk without pain and breathlessness so it was definitely the right decision for me, I can still feel the af but nothing like before.

[Sally_Scott]

I also had permanent Afib and landed up in hospital with heart failure and fluid on the lung and luckily they gave me another cardioversion so I had the pacemaker implanted 3 weeks ago. Don’t think I’m ‘turned on’ yet as feel no difference. I was told that they had set my hr to not go lower than 50 (which I don’t) I’m having an ablation to cut off the AV nodes in 3 weeks. I hope it gives me a better QOL. Altho you can still go into Afib apparently it doesn’t feel as bad as it does pre PM. You and I know only too well what it’s like being permanent Afib 😩. Good luck if you decide to take this route.

[Jennywren2953]

I had pacemaker fitted in October 17 due to constant AF. My specialist tried every drug to keep the AF under control but nothing worked.I had the AV node ablation the following May. Best decision I made. Every time I go for pacemaker check they say I am still in AF, I just can’t feel it.they say my battery has 11 years, I’m 67 so if will probably see me out.

[Nannysue1 in reply to Jennywren2953]

Thanks for your reply. Can I ask why you waited 6 months for the AV node ablation, as most people say they have that 4-6weeks after pacemaker insertion?. We're the same age , so glad to hear that this has helped. How often do you have to go to have battery checked?. Also can you feel the pacemaker and has it stopped you doing anything?.

[Jennywren2953]

I had an ablation to stop the AF a few months before I had the pacemaker put in. Unfortunately it didn’t work and my heart rate was up to 180. I went to emergency and was admitted. They put me on intravenous amerodion. After a few days they did a cardioversion, my fifth one, but my heart rate went down to 22, and wouldn’t come up, so they said pacemaker was the best thing to do. I think they thought that would fix the problem,so they tried me on various drugs, but I was still in AF and had episodes of high heart rate. My heart specialist said AV ablation was the last resort, that comment, didn’t make me feel very optimistic, but he thought it was the way to go. He told me they would set my heart rate to 80 at first then down to 60 and that I wouldn’t feel the AF. The reason I didn’t get it done sooner was I was hoping the drugs would work but after 6 months, snd hearing about some of the side effects of things like digoxin that I was on, I decided on the ablation. I have never regretted it, I can garden, play with my granddaughter and lead a normal life, before, I had to sit down to wash up, was breathless all the time snd had no quality of life. I am paced 100% of the time but I wouldn’t know it I don’t get any sort of palpitations, when I first had it done it was a strange feeling, everything went quiet, it had been so erratic for so long. Everyone is different And maybe I have been lucky, it doesn’t worry me that I am 100% paced , relying on a machine, other People are relying on drugs to keep them alive . I do have to take blood thinners but that’s a small price to pay in my opinion.

[Nannysue1 in reply to Jennywren2953]

Thankyou for that insight, it's very helpful. Glad it has all worked out for you. I too have grandchildren, 9 to be exact! And I travel a lot and like to swim etc, so need to check that a pacemaker would be an improvement rather than limit some of those things. I'm also a little squeamish at the thought of having it under my skin 🤮

[Jennywren2953]

I know exactly what you mean, my kids were a bit squeamish when I first got it, but I think they forget I have it now, they just expect me to keep up with them, but I tell them, I’m 67 not 30 😂😂😂

[dedeottie]

Hi. This is a very interesting post as I am due to discuss with my EP. Tomorrow. Can anyone tell me how the pacemaker copes with the extra requirement during exercise. I am talking about going for long walks with some hills/ pleasure swimming, nothing overly athletic! X

[Alphakiwi in reply to dedeottie]

Had that thought to as i to am awaiting same procedure. Have been a lifetime comp cyclist. dont expect to do thos now but want excersise for health. I thoughtbi remember there being a pacer on demand . maybe im dreaming or the stuff of the scientific future. Col.

[Palpman in reply to Alphakiwi]

The newer pacemakers are more intelligent nowadays and pulse on demand. Probably reading O2 content of the blood.

I'm hoping to get pace and ablate with one of these newer PMs.

I suspect I'm having episodes of total heartblock with a pulse of 32.

[Nannysue1 in reply to Palpman]

Oh that doesn't sound good. Let us know how you do. Wishing you good luck.

[Mike-tyson]

I have been offered a pacemaker then ablate at UHNM Stoke as advised the best option for me. But still waiting for appointment to see the pacemaker specialist 😡