Couple of questions from a German afib veteran

Hello from Germany,
to make a long story short: I am 57 years old and have had atrial fibrillation for 25 years and two PVI as well as an isthmus ablation for atrial flutter. The first one in 2014, together with flecainide PiP, gave me 10 years of relative peace.
Then the attacks became more frequent again and in April 2024 I had a second PVI at the very experienced Leipzig Heart Center. This failed and afib quickly returned. Now I have weekly seizures, sometimes more frequently. I can reliably stop them within two hours with 200 mg flecainide pip.
The heart center in Leipzig no longer wants to perform radiofrequency ablation because I already have a 25% stenosis of the LIPV. They offer me pulsed field ablation. I'm not sure whether I should take the risk.

Now my questions:
(1) Would pulsed field be an option with a pre-existing pulmonary vein stenosis?
(2) Is it possible to take flecainide regularly for many years if I decide against another PVI? I tolerate flecainide well and have already taken it for several months during the blanking period.
(3) Would it be an option to take 50 mg flecainide for only a few days at times when I have more PACs? To bridge these phases without atrial fibrillation happening.
(4) I know afib is a progressive disease and the time might come when it won´t disappear. As I am relatively young, ist it an option to leave afib as it is and do nothing against it apart from stroke prevention and rate control? Is it possible to live an active life with it for say 20 more years?

Thanks and kind regards
Dirk

The answer is a qualified "yes" to all your questions. I would just add another option which would be a surgical ablation like the Wolf Mini Maze (WMM) or the latest minimally invasive Cox Maze, or a Hybrid procedure. These types of procedures often work when catheter ablation does not. Not sure what is available in Germany, but some have opted to travel to the US, UK or even Japan, where the medical standards are high, but the fees only a fraction of what you would pay in the US.

Jim

Thanks for your input. Mini Maze and hybrid procedures are available in big German heart center such as Leipzig, Berlin, Bad Oeynhausen and others.

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mjamesone
The answer is a qualified "yes" to all your questions. I would just add another option which would be a surgical ablation like the Wolf Mini Maze (WMM) or the latest minimally invasive Cox Maze, or a Hybrid procedure. These types of procedures often work when catheter ablation does not. Not sure what is available in Germany, but some have opted to travel to the US, UK or even Japan, where the medical standards are high, but the fees only a fraction of what you would pay in the US.

Jim

I didn’t know this. After three failed ablations I wasn’t told of this option by my EP. Instead I chose the drastic AV node ablation. My HR is pacemaker controlled (no longer 190++ tacky flutter) but I feel each AF when my atriums beat over 300 on monkey crack mode.

Plus side I no longer go to the ER which became so frequent that about 23 days out of 30 one month I was admitted and stayed in tachycardia and 54 ECVs couldn’t fix me.

My AV node ablation only took 20 minutes and they didn’t crack me open. However this type of ablation is a nuke job and considered the last resort.

I heard the medical care is superb in Germany. I took two years of medical anthropology where each country’s medical care was compared and dissected.

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susan.d
I heard the medical care is superb in Germany.

Yes, with all modesty, it is. We have quite a few big heart centers with each of them performing thousands of ablations yearly. PFA is being considered state-of-the-art in many circumstances and done regularly.

It is also very affordable, as this type of treatment is covered by health insurance for virtually the entire population.

A question about AV node ablation:

Is life better for you after this radical method than before? Are you afraid that the pacemaker might fail?



Edited 1 time(s). Last edit at 09/24/2024 01:51PM by Dirk.

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Dirk
.

A question about AV node ablation:

Is life better for you after this radical method than before? Are you afraid that the pacemaker might fail?

Sort of but I can’t obsess about it and I get no positive benefit from worrying. My main worry is the battery life. Medtronic recalled twice right before I had my emergency pacemaker (heart stopped up to 15 seconds every 5-10 minutes after an ablation for 2 days). One recall was a couple of months before my implant.
Pro-better quality of life.

Neg- being extra careful and I am super anal and wait at the airport TSA to be hand patted instead of going through the machines. I live now abroad when all government offices and hospitals and some stores have the machine. It takes time to plan to get it waived, so I found it facilitates matters by carrying my PM card. I get quizzed 95% at the airport when they ask for my card and then they quiz me on my EP’s name and date to confirm. Crazy because a pat down will show a bulge on my PM area. Small price to pay for a >60 minute delay.

However, accidents do happen. The bus doors slammed on me while entering and the bus driver didn’t open the doors but instead started to drive so my leg and hip was outside the bus and I was screaming and my PM/ribs were in a tight vise inside the bus. I’m just happy my neck wasn’t in a vise. The bus driver did not stop until the following stop. This is a Susan story because weirdness happens to me. I did go to the urgent care afterwards to get my PM checked out and chest X-rays for broken ribs to get peace of mind.

I used a local EP for the procedure with the promise he would not nuke my branch of Her which would act as a backup and give me a small pulse, enough time to get an ambulance. My EP decided to nuke it and afterwards test it to confirm I had zero pulse without the PM. If you ever decide you need the AV ablation as a last resort, get it in writing (consent form) not to nuke the branch of Her

Online they sell PM protective gear but I’m not wearing it.

I had no options on what brand of PM. The problem they had with two recalls were faulty battery levels during the routine download interrogations . The PM is supposed to warn one their battery is ending but instead they just stopped dead and some folks died.

Thank you, Susan!

Hi Dick
I was diagnosed with AFIB in 2012 during the recovery part of a stress test. Every year or so I'd have a physical exam and sometime the afib would show up in the ECG but not always. I also had 3 or 4 holter tests and for the first one I don't think afib showed up. But afib / aflutter became more noticeable and the % of time I was in afib increased in subsequent holter tests. But I never took any drugs or anti-platelets, much to the chagrin of the doctors. I carried on and did not change anything in my lifestyle. In 2023 I climbed Grouse mountain (2600 ft up over 1.5 miles) and tried to keep myself fit. Two months ago I had my first ever afib 'event' where my pulse jumped to 150 bpm and i had to get it lowered by amiodarone. So you can monitor it and if you're lucky like me, it won't bother you for a long time. Good luck and stay positive.