Three years later: I think its worth... - Atrial Fibrillati...

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Three years later

johnMiosh profile image
20 Replies

I think its worth posting this as a bit of good news makes a change at the moment.

I didn’t even notice this anniversary, but my daughter pointed it out to me; it is now three years since my mini-maze. I also had a catheter ablation for flutter and re-isolation of one of the pulmonary veins six months after this, but this was planned from the start. I have been pretty much AF-free since this procedure; I have had a few wobbly heartbeats picked up on the Kardia, but these were not accompanied by any symptoms and were generally dismissed as normal by the cardiologist.

My fitness has taken a nosedive; admittedly from a very high pre-AF base, although as endurance exercise was probably the cause of my AF, this may be a good thing. I have not tried to regain my original fitness level, worrying that this would also bring back the AF, but I have been out cycling and walking regularly. I started off very steadily, over short distances with no hills and gradually increased the intensity. Last summer I went back to the bike club, but for the social rather than the faster pace rides. Last year I did 2700 miles at 14.5 miles/hour, this is a 1000 miles and 1½ miles/hour worse than in 2015, but it is a comfortable level and I am very happy with my abilities, compared to where they could have been.

I was an unusual case; the mini-maze is not common in the UK. It was difficult and recovery was relatively slow. I did feel that the debilitating aspects of the procedure were not really made clear, and I think someone a little older or less athletic may have struggled. However, I have no AF and very few ectopics, my fitness is probably above average for my age and if anything my ECG is still improving. I take no drugs and due to the LAA occlusion, I don’t even need anti-coagulents.

The clinical trial I was part of has now finished, the report has not yet been published, but I know that in the UK at least the mini-maze has been markedly more effective that the catheter ablation approach. Although I would like to read the final report, I think that I would recommend the mini-maze wholeheartedly to anyone suitable, with the caveat about recovery being more difficult.

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johnMiosh
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20 Replies
BobD profile image
BobDVolunteer

That is really good news John and so glad you have accepted your new limitions, something many seem unable or unwilling to do. Well done and long may it continue.

Dawsonmackay profile image
Dawsonmackay

The mini maze procedure is head and tails better than any ablation; however, that said, the real difference is the min-maze requires a heart-lung machine because your heart is stopped during the procedure so that the heart surgeon can remove ALL conductive tissue from the pulmonary ducts almost down to the ventricle. In ablation it's a search and destroy for the electrical signals only. Glad that you made it. Here in the US, the Maze and mini-maze will no longer be performed by themselves. A patient has to exhibit other cardiac complications too.

CDreamer profile image
CDreamer

Excellent news John, as you say - good news is always worth sharing! I’m interested you say that the debilitating aspects were not made clear enough - I think that happens with many procedures and I’m not clear why that happens. My sister recently underwent hip replacement and as a nurse - thought she knew what to expect but has found out that recovery is a lot more complex than she realised and that it is taking her longer than she anticipated to recover fitness.

Sounds like you have now got good balance in your life - long may AF stay away.

GordonS profile image
GordonS

Excellent news John, always look forward to seeing your rides in Strava. Keep it up 💪

irene75359 profile image
irene75359

Thank you for returning to let us know how you are; great to hear you are feeling fit again after some pretty major surgery. Keep on in rhythm!

jeanjeannie50 profile image
jeanjeannie50

That's so good to hear, thank you for coming back and giving us an update.

I think the most I ever cycled in one day was 30 miles and I made sure the whole world knew about it!

Beaky-Pompino profile image
Beaky-Pompino

May ask John, how old are you?

johnMiosh profile image
johnMiosh in reply to Beaky-Pompino

57 now. I have been racing bikes since I was 12. My parents were also cyclists, my mother had undiagnosed AF for years.

Beaky-Pompino profile image
Beaky-Pompino in reply to johnMiosh

Thanks. There may be hope for me yet, though I don’t think the maze is available over here yet. First it’s the cardioversion for me

Singwell profile image
Singwell

Thanks for sharing. It'll be interesting to read results of research.b

AFCyclist profile image
AFCyclist

Well done John. Keep pedaling. I have 2 electric bikes now, which have helped me a lot, particularly on the hillier stuff around here. All about adapting your lifestyle to the situation.

johnMiosh profile image
johnMiosh in reply to AFCyclist

If its good enough for Sean Yates ...

AFCyclist profile image
AFCyclist in reply to johnMiosh

😊

👍👍👍👍

Nanopiano profile image
Nanopiano

So nice to hear of your mini-maze success! I had one done almost exactly a year ago today on my 70th birthday...anything to avoid someone throwing a surprise party! I found the post-surgical phase to be pretty easy (no pain, no real malaise). The only negative (if you want to call it that) episode was it took a long time for me to recover from anesthesia from being on the heart/lung machine for longer than usual. It was touch and go for awhile according to my family, but I was oblivious, being gorked out for about three days. Like you I have been afib free except for a few expected flutters mostly at night. The one time I definitely felt back in afib (and was according to my blood pressure monitor) was right after I had a pneumonia vaccine this February! It may have had absolutely nothing to do with it, but for the first time I took a Flecainide PIP and it subsided within an hour. The other bit of disappointment was my cardiologist suggested a transesophageal echocardiogram (TEE) about six months post-maze, just to make sure there was no residual pouch around the atrial appendage...and there was. Consequently, just to be safe, I still take Eliquis. No big deal considering the outcome of the surgery was a success. In response to Dawsonmackay, I had not heard that the maze and mini-maze will no longer be performed separately from another heart procedure in the US. I'm assuming it's because of the COVID situation and it's considered elective? If so, let's hope that's a temporary situation! Again, congrats!

johnMiosh profile image
johnMiosh in reply to Nanopiano

The TEE (TOE in the UK) was unpleasant, but for me it did show complete occlusion.

wilsond profile image
wilsond

Thank you for the positive post and update. Great news and useful information ! Stay safe

sfh3l profile image
sfh3l

Wow! That is indeed brilliant news. I must go away and read up on the mini-maze. I do think there must be mileage in getting the LAA blocked off. That seems to me to be a far more pragmatic approach for AF sufferers than actually trying to eradicate the AF itself. After-all, as I understand it the AF is never going to kill us, but the strokes it may cause just might. Hey ho - enjoy your anniversary and here's to many more!

johnMiosh profile image
johnMiosh

There is some doubt as to whether LAA occlusion effectively removes stroke risk; that's just one of the variables tested in the trial. But the results from Sheffield (unofficial and based on less than 20 people) show great success for the minimaze in stopping AF, so far. i also understand that the two catheter ablation group needed further intervention later. The full report will take some time to compile.

Aus19 profile image
Aus19

Thanks for this very instructive summary of your progress.

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