recently diagnose permanent AF

[Midnight2022]

I saw a specialist in AF today. He said the solution to my permanent AF might be to have a pacemaker fitted. Has anyone else been prescribed this treatment for AF?

[mjames1]

"Permanent afib" is an agreement between you and your doctor that you don't want to take any further steps to correct it. From the wording of your post, it sounds like you may not have participated in this agreement/diagnosis.

Don't know your history and not a medic, so have no idea if a Pacemaker makes sense for you. For some it's been a blessing, but there are may be alternatives depending again on your individual situation.

For example, there's catheter ablation if you haven't done it yet, but if you're too persistent for that, there are surgical solutions like mini maze or a hybrid procedure. And of course, ablating the av node and a pace maker (pace and ablate).

So if you haven't already, make sure you go over all these options with your ep, keeping in mind that if they don't do surgical ablations at your medical center, they might not be familiar or encouraging. Several members here have had it and maybe they will chime in soon.

Jim

[BobD Volunteer]

A pacemaker alone will not stop AF.

It may enable stonger drugs to be used to control heart rate without it going too low but it won't stop AF. A pacemaker and AV node ablation where the natural pacemaker is burned away and you rely on the PM may enable your ventrical (paced by then) to maintain a regular beat but your atrium can still do whatever it wants and you may well be able to feel this .It is not a panacea!

[DawnTX]

There is no cure for a fib so you have permanent just remember it’s never going to get better and it depends how symptomatic it is for you. Some people speak about only having events a few times a year if you have constant and you feel your quality of life has been stolen from you, then talk to him more about the pacemaker. Did he mention AV node ablation? I just had both done in February, because meds, cardioversions, etc. Nothing Health, Nothing lasted and I was miserable and had no life. I could barely scuffle across the floor. I was just a lump on the couch. Getting a pacemaker for me. What is the best thing I could have done even though I fought the idea in the beginning. Be careful who you get information from. Because all of this stuff changes daily as far as new ideas and new devices so someone may talk about an older one. My pacemaker was just released not that long ago prior to this they did not have one that worked for me. Many people do not know about it and there are still doctors learning how to do the procedure because it’s not just the pacemaker it is the bundling of the nerves, etc. I am blessed my doctor is now teaching others.

Until you get used to having one there can be some quirky things but the odds are it’s you know with the pacemaker lol there are things I did not know were considered normal so they scared me so I called and got answers. That’s what you need to do. Call your doctors office. There is so many different things he can tell you if it’s serious or not chances are it’s just normal. when they told me they were setting me to 80 I thought it meant if I went above 80 then it’s not working lol I found out A) stop checking your heart rate and B) the pacemaker is made to adapt to what you are doing and anticipates the heart rate so if it goes up to 100 and you were doing active things it’s OK. I’m not sure if you shoot up to 100 when you’re sleeping, I think I’d call for help for that one. I also have a back up switch so people who worry about what if it stops, I can’t speak for all of them but I have back up. I also get monitored 24 seven and I also have a hotline 24 seven. At this point, I tend to forget it is there.

just to give you the reason why my doctor likes pacemakers. Cardioversions are to try to put you in NSR IT WORKS OR IT DOESN’T AND WE DON’T KNOW HOW LONG IT’S TEMPORARY I HAD 3 1/2 WEEKS OF HEAVEN THEN MY SECOND ONE DID NOTHING AFTER THREE SHOCKS. I’VE HAD JUST ABOUT EVERY MEDICATION THEY WORK UNTIL THEY STOP WORKING. USUALLY IT’S JUST A MATTER OF WEEKS, IF THE DOCTOR DOUBLES THEM, THEY STOP WORKING AGAIN IN ABOUT TWO WEEKS Sorry I don’t know why my phone changed my lettering, but it did

my doctor believes in giving quality of life ASAP. Not dragging us through testing everything if a cardioversion, med or anything else fails why keep trying it is his thought. I agree I wish I had the pacemaker sooner. I had almost a year of heart rate in the 150s constantly. That’s no way to live. Thank God I found this doctor. We all have different things wrong with our hearts even if we have a fib so you need to sit down with him. Let him tell you why he thinks it’s a better choice for you just picture only needing to see your doctor every three months or so just for a pacemaker check. And your EP once a year. I will be seeing my cardiologist every three months right now. You never know when you have to see them. It depends on what’s going on with you. It is just such a settled way of living as my doctor says my hearts, the same as anyone else now. I do have heart failure waiting for results of an echo so things from there a little bit different as I said we are all different. Wouldn’t it be lovely to not worry when you’re gonna get hit with the next attack of a fib?

[beardy_chris]

I was in permanent AF but suddenly started getting syncope (passing out) and heart pauses (for up to 20 seconds) which wasn't good! I had a pacemaker installed to deal with the pauses. It didn't stop the AF but it did stop the syncope and pauses. It actually does very little - I am paced less than 1% but it helps to keep me conscious which, on the whole, is a Good Thing!

So the question really is what does your specialist aim to achieve with the pacemaker?

[baba in reply to beardy_chris]

Same as my story, nice to remain conscious.

[Gumbie_Cat]

I can’t offer any other advice, but do hope you get this under control one way or another. I read your profile and see that your A Fib has become more persistent recently, but I imagine that your EP has gone through the other treatment options with you.

I am at a similar stage, as my A Fib worsened rapidly, following a Covid infection late last year. Prior to that, I was getting a month in sinus rhythm between episodes. Though the episodes did last for days - so perhaps I was already well on the way. Anyhow, my catheter ablation lasted just two days, and they found too much fibrosis to recommend further procedures. This felt a huge blow at first, as rate control is now my only option - with pace/ablate as a back-up if that fails. (I would definitely go for it if needed.)

Luckily, things do seem to be settling down a bit, with some energy returning and the rate being reasonably well behaved for now. The mini-maze isn’t available where I live, but others have gone for this or sought it out privately. I think that in some ways our decision making about that does vary with age. Not saying that they refuse to do the operation on older patients - they do - but for me the pace & ablate option sounds quite straightforward. Even though it’s a last solution when catheter ablation hasn’t worked. Pacing technology does seem to be evolving too, with the type of ‘conduction system pacing’ that Dawn mentions.

[Midnight2022 in reply to Gumbie_Cat]

Thanks for responding and I’m interested you also got worse after covid as that’s what happened to me. Before covid I was pretty fit and healthy for my age of 78 and only getting occasional attacks of AFib which always resolved with beta blockers. Now I’m a virtual invalid! what is mini maze and pace/ablate??

[Gumbie_Cat in reply to Midnight2022]

It is such a weird virus. I wasn’t very ill at the time, it was two weeks later that. I went into an AF episode, which turned persistent. It could have been due to happen anyway of course, I will never know.

Pace and ablate is as Bob describes above. Quite often a pacemaker is just used to stop your rate going too low though, with medications for the higher rates, Other times it is used to stop the atria affecting the ventricles - with an AV node ablation. (Different from the left atrial ablation which tries to stop those atria fibrillating.)

Mini-maze is done on the outside of the heart. There are lots of posts about it, if you use the search box at top right. Same with ‘pace and ablate’ etc.

This page is good for explaining treatments heartrhythmalliance.org/afa...

On that page, for mini-maze use ‘Hybrid AF ablation’. (As well as the external thing, a catheter ablation is done - hence ‘hybrid’.)

I tend to read up a lot on these things, but then I go with the EP’s advice, as I reckon he is the expert!

ETA - I found this interesting on some of the new ideas for pacing the heart. Dawn has had something like this with the ‘His bundle pacing’. Looks like it is still in the trial stage in the UK, though it’s good to see progress on these things. medscape.com/viewarticle/97...

[Nickibmibile]

I was in persistent AF for a lot of years. I had a pacemaker fitted ten years ago and it was amazing 😁 Unfortunately the AF came back and I am on Warfarin as well but it's still great for me and I would have it all over again if needed.

[Deejay62]

I have permanent Afib and other arrhythmias. I had an AV node ablation and a 3 lead device with defibrillator fitted CRT-D. My device resynchronise any abnormal arrhythmias and if there’s a dangerous one it would shock it back to normal.

It doesn’t sound like it’s definite because he said a pacemaker might be an option. I think you should ask your specialist to explain more the next time you see him and ask if there are any other options. Write questions down and answers. Ask for a report on what was discussed to be sent to you.

[Sisteract11]

I’m not too sure how the pacemaker would help as I already had a pacemaker before my AF

[Hidden]

You may want to research Dr Randall Wolf “Wolf Mini Maze” - there’s a doctor that performs this in the UK. We found him on this blog, and my husband had the Mini Maze procedure by Dr. Wolf in Texas in ‘22. He is now in NSR w/no meds, and we’re forever grateful we found him on this platform.

Link to Dr Wolf’s website:

wolfminimaze.com

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