Where have the last 12 months gone? I honestly can’t believe it’s a year since I had my mini maze and a year since I last had afib!
I would do it again without hesitation. After 5 plus years of persistent afib and having been told by the EP who did my catheter ablation that I wasn’t capable of NSR, here I am.
The recovery from mini maze for me was easier than from my previous catheter ablation as the EP got too near my phrenic nerve.
I have had a small number of bouts of bigeminy and have some PVCs, not a burden that causes a concern. I think once you have afib you are so tuned into your heart that you notice everything. I remember having a discussion with my surgeon about a Link device to record my rhythm post mini maze, he said I wouldn’t need it, you will know and then catch a trace on Apple Watch or Kardia and he was right.
I am back exercising and drinking alcohol (not being silly) and coffee. I definitely don’t miss the breathlessness and flapping fish in my chest.
I am so glad I shared my journey on here as there are now over a dozen people who followed my journey who have had, have a date for or are waiting for a date to have mini maze in the UK. I have a small private group for us all to support each other so do PM me if you have been thinking about it and would like to join.
1 year does not a lifetime make and so I hope I will be posting again a year from now, still afib free.
Mini maze can be hard to access on the NHS, it is a postcode lottery but if you are in England you can get referred to one of the surgeons who does it. It is available privately for the rest of us.
Catheter ablation is a great solution for most people and especially those in paroxysmal afib, but when you become persistent like me the success starts to fall which is why I sought an alternative. Each one of us will make the choice that is right for us. May we all beat this afib monster in our own ways 😘
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MummyLuv
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Wow that year has gone fast. For me, your celebration is far more important than the coronation. Well done and congratulations on your 1st year of being AF free.
My atypical atrial flutter started just over one year ago and in January this year I had a surgical ablation with AVR, and LAA clip. Time certainly does fly and congratulations on your anniversary. Long may the peace within your chest continue x
sadly I don’t think ERI having raised my hopes are any further forward with their hybrid path. It’s the surgery side that have stopped training at the moment. I do hope they pick it back up when the pressure is off their waitlist a bit (she says hopefully)
I hope it’s an option for future patients. I have a feeling that it might be used more on younger people, and I will be in my seventies by the time it could be made available. One moment I’m coming to terms with being on rate control only now, and the next I’m railing against it. I was still going in and out of NSR until last October and it all seems too sudden. Yet I’m able to just get on I suppose, just slow on hills - and can’t really run for the bus.
Good to know! I guess it might be possible. I’ve been told there is too much fibrosis, seen due to being part of a study, so further catheter ablations would be unlikely to work. Then even cardioversions would require years on Amiodarone and are not advised. Still veering between acceptance and anger!
It really sounds like the mini-maze is a great treatment though - here’s hoping for widening availability for all!
Hi age is not really an issue. I am 71 was diagnosed with P-AFib Oct 2020. Ablation ruled out for me due to severe LA dilation. Most meds were ruled out, over time, to treat my AFib due to side effects. Over the span of two + years my AFib became progressively more severe, longer lasting and quite frequent. Was put on Amiodarone recently after being admitted ACU for 3days which was the only medication option available. This drug terrified me. I am not prepared to take it Long term.
Long a fib story but the best part of it is I went for consult with Mr Hunter in Sheffield Yesterday and he put me on his NHS list for mini maze procedure. Honestly, I did not expect this.
He truly is an amazing caring guy. I was blown away by the whole experience.
That is such amazing and positive news! The EP didn’t recommend Amiodarone for me as it would need to be long term.
It just shows that it’s worth pushing on to find a solution. I don’t think I would be eligible for the NHS option as I live in Scotland. I suspect that if rate medication works, this will just be me. I do get scared, having seen my sister become less and less active, taking falls, then eventually coming off the anticoagulants due to a micro-bleed on the brain - then rapidly having the massive stroke that ended her life. This has been pretty recent I guess, and it has made me so wary of just being in permanent AFib. I’m quite obsessive about keeping up the walking!
Hi Tplongy its rather a long story an dont want to bore you with to many details so i will keep it simple.May 2023 had 1st consult with Mr Hunter was put on his NHS waiting list. He estimated that i would be called up Nov 23 for maze.
Jan 24 i had call from pre op nurse which i could not follow up due to another health issue that i needed to discus with Mr H before i accepted a pre op appt. Pre op call indictated procedure was next.
10 Jan i explained possible new health issue to Mr H and he advised i get it investigated. Hence, i was taken off his NHS waiting list. He planned to do another telephone consult 6mths time but he also said i could contact him if i needed to do so before then.
My afib along with severe tachycardia got really bad, so i contacted him ran everything by him. Long story but pleased to say i received call today for pre op next Tuesday. If all goes well i will have maze procedure pretty soon.
Mr Hunter is trully a very caring human being and i have total confidence in him.
Thanks so much for responding so quickly... shame you weren't able to get it done in Jan but delighted that you r heading for it next week... amazing. Will be watching with baited breath to see how it goes, have also joined Mummyluvs Facebook forum....
Also interesting your comments on Amiodarone... ditto I also was terrified about going on this tablet at all and basically refused a 3rd CV with amiodarone because of the risks and the low chance of success.
I have persistent AF, 2 failed CVs (one lasted 10 secs, one 5 hours) but every single medication I have taken, Bisoprolol and now Diltiazem, in whatever doses, makes me feel diabolical. I have zero QOL and have had to resign from my job. My cardiologist is lovely and supportive, my EP not so much, but nevertheless scheduled for an ablation in 3 weeks time at NGH in Sheffield, but remain totally unconvinced that it will have any chance of success and feel my EP (who sent someone else to my 2nd appt so couldn't discuss it) has basically scheduled it for me just to stop me being a nuisance and banging on about being medication free... however I don't want an ablation for the hell of it! Thus am seeing Mr Hunter privately tomorrow to get his 2nd opinion on whether I should proceed with it or if I might be eligible for a mini-maze....
Many thanks....and fingers crossed all goes to plan next week
Hey Tplongy i not out to give you false hope but i am more than sure Mr Hunter will defo sort things for you. You tick so many boxes. I dont have permanent afib but going by my declining track record, since stopping amiodarone in August, afid could become permanent. Its severe, long lasting rapid tachycardia (26hrs longest) induced by afib, that prompted Mr H to gear toward maze asap. Bless him. Dont know what i will do if im no longer suitable for maze.Like yourself i no longer function in life at all. If i get emotionally excited by a beautiful sunset or annoyed by someone who treats a dog badly, i instantly go into afib, then comes the tachycardia. Hence, I now cut off from people, places and things that trigger an emotion...lol sort of like a reclusive zombie. I used to trek sandunes, woodlands, beaches for many hours on a daily basis. In total 30 miles a week...now im lucky if i manage to walk around the block.
Anyway at my first consult when afib was not as bad as it now is Mr H did not rate catheter ablation very highly even in my case with PAF So considering you have permanent afib its very unlikely he would endorse one for you.
Ohhh by the way i saw a private EP Dec 2023 who advised ablation. Regardless of being continually told by cardiologists for 2yrs that ablation was out of the question in my case i agreed to have it done in Jan at cost of £10,000. As luck would i received consult with Mr H in Jan so i cancelled the ablation. Pheww!
You have to wait a certain length of time for your heart to heal after an ablation before any other heart procedures can be done such as maze. Bear this in mind if you decide to have ablation while you are waiting for maze procedure with Mr Hunter.
I am not on any medication to treat afib....not allowed any due to severe side effects.
I wish you every success for tomorrow. Having said that, in all honesly i believe Mr Hunter will put you on his waiting list for maze procedure.
Yep i also in mummyloves facebook group so look forward to catching up with your there.
don’t want to hijack your post MummyLuv, don’t spose u can point me in the direction of any info on that? I am seeing Mr Hill consultant at northern general in June ... thank u
Congratulations, Alison. Wishing you much more success with your mini-maze and for being my friend during the bad and good times.
You have been wonderful in sharing your journey with us and you helped me to take the plunge about 6 months after you had your mini-maze in the UK.
In two weeks or so, I will be celebrating 6 months after my mini-maze in Japan, in NSR and psychologically healed from the worry of fainting from AFib. I will tell my story how it came to pass and what I've learned about the procedure.
I aim to celebrate on the 22nd May with a bang, and will attach to the post the story how I came to end up alone in Tokyo at 76, all the way from Greece.
It was a wonderful experience and I can't believe where I am today !
All is well Steve. I am saving myself for the 22 May, when I shall post the six month anniversary and the full details of the new heart odyssey. I hope you are well and I follow you closely with the apostrophe inquisition...
Outside the NewHeart Watanabe Hospital, Tokyo, December 2022.
Alas, no, Steve. Was 1.80 and now more like 1.75. Megumi who admitted me was smaller. Always wanted to be 1.88 or so, but we can't have everything...Hope that all is well with you.
Well, it will be better next week with a holiday on the wonderful Suffolk coast birdwatching and walking. A small op on a safe polyp near my rear end has made life very uncomfortable this last few weeks but, other than that, 1.25mg bisoprolol a day is keeping my heartbeat more stable. I started to take it as my GP felt it would be a good way to be sure I had no AF for the minor op whole I was off the anticoagulant.
So glad to hear you are afib free 🙏pls can i join your private group.im researching for my husband who is in consistant afib but no symptoms normal blood pressure etc has been told low risk but to go on blood thinners.we found nattikosine which are natural blood thinners so he takes them as clot risk worries him.but in future he may decide to try surgery but cardioversion and abslation do not appeal as so many ppl say it didnt work but i found Dr wolf who does mini maze in usa i think so reading your post was grt to know he can get done in uk privately if need be.thankyou
so pleased for you. If I was younger I think I would try for a mini maze too, but I have so many things wrong with my heart and my age against me, no chance. It would be nice to not be breathless and always struggling against the times of tachycardia as well as the afib
Have a good coronation weekend snd long May your good health last
That's brilliant news...AFib free for one year. Yes year has flown over because you have been living a life and enjoying it AFib free. Phew, what a relief What a success story. Eureka!!! CONGRATULATIONS TO YOU...Charles will have to take a back seat.I went to see Mr Hunter yesterday in Sheffield...was blown away...he put me on his NHS list despite the fact that I was fully prepared to go private.
Thanks to you posting on here about your mini maze experience, I now have hope where there was fear...there is light at the end of the tunnel.
That's great. Seeing your post, I noticed that it is exactly (4th May) 13 years since my ablation. I was in AF 80% of the time, I'm now about 0.1%, to all intents and purposes AF free. I go to aerobics, Pilates and paddle board with my dog which I'm very grateful for. I hope yours is as successful!
We all need to hear success stories ! Long may nsr continue for you and hopefully more hope can be given for AF sufferers. It seems like a lot of heart issues are on a precipice of changing potentially better treatments. Hopefully they’ll work out how to reverse all heart issues in the not to distant future. Hopefully I’ll join you in nsr after my trip to Sheffield 🤞🏼
Long may it continue, do I remember a post where you said you had a paper describing the differences between a mini maze and an ablation? I'm in AF currently despite taking flec and biso and having had 2 ablations
Had to google bigeminy and PVC as I had these visions of someone with a plastic fetish and an uncontrolled habit of running out and marrying strangers at will!
I've just be scheduled to have my first ablation for July at Barts in London and am now frantic about my phrenic nerve having just googled that as well 😂 Unfortunately my flapping fish turns into a thumping kangaroo if I touch a drop of beer at present. I'd give anything for an occasional pint again!
Did you have all that done on the NHS, including the the mini-maze?
lol, it does sound like that! Catheter ablation on nhs and mini maze privately. Phrenic nerve damage is incredibly rare. Good luck with your procedure x
Oh blimey. Not made me too optimistic about mine in July!! I was hoping to evict the clog-wearing troupe of kangaroos currently practising routines from the River Dance inside my chest cavity. Why didn't you try a second one as a matter of interest? It's said the success ratio goes up to 70% for that, no?
Sorry to keep asking questions, but the only place I've been given any worthwhile info is on here. The medical people don't seem to have the time down here in London. I was paroxysmal for maybe 15 years and have only been persistent since the end of Feb. I know the longer you've been in AFib, the less chance you have of the ablation working, but the one thing my cardio guy did say was that they only count from when you go into persistent. Is that consistent with what you was told by what seems your wonderful consultant.
I was 5 years plus in persistent so my odds had dropped masively. My EP recommended I have a second catheter ablation despite the odds, he also told me not to do mini maze as it was a little known procedure. I am still under his regular care (as I had the mini maze privately) and he doesn’t feel that way now, he also knows a lot more about the mini maze too. Xx
what I would say to you is, do your own research and advocate for yourself. 😍. have a read of my post on ‘very interesting conference’ the videos there are full of research stats and will help you decide what is right for you
Many thanks Mum. Think I'll try my chances on the conventional (i.e. cheaper) one first, then have a look see. And thanks for taking time out to answer folk's questions on here still. John xx
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