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Hypothetical : Free mini maize or Hybrid procedure in next 6 months

mjm1971 profile image
63 Replies

so

please vote on the following

let’s say

You have an AFIB attack every 4.-6 weeks

When in AFIB it’s not debilitating but you get tired and feel like your going to faint quite a bit .

When in AFIB Your BPM ranges from 110. - 145 even after 8mg of bisop .

You have had had failed ablations

but your all now offered a mini maize on the NHS within the next 6 months ..

They give you an 80%+ chance of curing your AFIB

They give you 99% chance of stopping a stroke caused by AFIB

how many of you would actually take them up on the offer and how many would rather stay on their current treatment

Purely hypothetical I’m just curious how many of actually know enough about the maize/hybrid procedure and how many would go for it

thanks

Matt

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mjm1971
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63 Replies
mjames1 profile image
mjames1

How long do these hypothetical episodes last and have they hypothetically ether tried daily anti-arrythmics or PIP (as needed) conversion :)

mjm1971 profile image
mjm1971 in reply to mjames1

let’s say they last for 4 days and yes you would be on Bisop and a rhythm control tab

mjames1 profile image
mjames1 in reply to mjm1971

I guess the point I was getting to is that Mini Maze is a big procedure. Bigger than catheter ablation with longer recovery and more procedural risks. Also, I believe that in the UK, it's relatively new, so not a long track record, but stand to be corrected on that.

In any event, if you could get things under better control (reduce your afib burden) either by a PIP anti-arrhythmic like Flecainide that would shorten the episodes from 4 days to 1-4 hours -- or by a daily anti-arrhythmic, that would prevent the episodes in the first place -- I would probably try this route before mini maze.

If you do go ahead with mini maze, try and get as much info as possible about who is doing it, what are their success stats, what complications have they had, etc.

Hypothetically, of course :)

Jim

Buffafly profile image
Buffafly

No, I wouldn’t, but I’m 78 and have comorbities which might reduce the odds on success. I’d opt for pace and ablate and get on with my life. Even as a younger, fitter person I’d hesitate for the reasons given by Jim.

BobD profile image
BobDVolunteer

I think the important thing to remember is that ANY and ALL treatment for AF is only for quality of life. With a good QOL would I risk a complex procedure? Probably not these days.

mjm1971 profile image
mjm1971 in reply to BobD

hi Bob , you always quote that all treatment is for QOL only , yet there are people who have had ablations and mini maizes and have never had an episode again and don’t need drugs . Surely that is classified as cured . You are far more knowledgable than me but are you meaning that everyone will get AFIB back and that they are all only on a reprieve and it will return ?

BobD profile image
BobDVolunteer in reply to mjm1971

In that I quote Richard Schilling who is known to be one of the top EPs. My own experience is that after ten years AF free following my third ablation I developed a different arrhythmia but that is another story.

The point about QOL is that AF alone is not a fatal condition and many many people live happily with it with no degenerataion of life for many years. In fact many people are quite unaware that they have it until the stroke hits. One reason we are so keen on pulse checks and screening. In other words, provided rate is well controlled and stroke prevention dealt with the end point is the same whatever treatment.

mjm1971 profile image
mjm1971 in reply to BobD

When we treat something and say it’s for QOL I assume that statement to mean no cure but we will keep you as comfortable as we can with ongoing treatment .

drugs can keep it masked and reduce risk of stroke that is true but they all have an affect on QOL

Mini maize gives you a chance of no AF and no drugs for AF or stroke prevention .

That is a cure

Right or wrong That’s my mind set on it

BobD profile image
BobDVolunteer in reply to mjm1971

I wish you well and hope you get what you so desire.

mjm1971 profile image
mjm1971 in reply to BobD

hi Bob

Do you believe there is no cure and only reprieve ?

BobD profile image
BobDVolunteer in reply to mjm1971

You can cure a disease. Can you cure a condition Jim? Also we know the affect (symptoms) the condition creates but not why. For nearly thirty years doctors have been poking about claiming to be able to stop AF and for a few of us that worked. For all the others it maybe didn't do so well. Then as I found, if you have a particular design of heart one door closes and another opens. i e a different arrhythmia. The really long term effects of all these treatments has yet to be discovered I fear but when I was younger I went for all the latest ideas without question.

I have always been a great fan of ablation as most here well know but the older I get the more I do wonder. Right now I try to enjoy life to the full within the confines of my condition.

Mind you it is not me you should be convicing,

BeeBee79 profile image
BeeBee79

I’m 44 - used to be really fit and run 5 times a week until Afib made it difficult to do and I was diagnosed 2 years ago. After a failed cardioversion, 3 ablations followed on by a cardiac arrest in Crete, ICD fitted with pacing leads, symptoms attempted to be controlled with stronger drugs such as Quinidine unsuccessfully. Had a 4th ablation in Feb where they went everywhere, this gave me more AF afterwards and they then put me on Amiodarone which has been great but not a long term option given my age and the toxic side effects. The plan was to meeting in May and take me off Amiodarone but with my history they didn’t want to rock the boat and I’ve been reducing the dose and for the first time, I’ve been in AF for most of the day.

Plan B is that I’m eligible for this mini maze procedure so I can me on here for more info and yours was the first post I saw. Not answering your Q exactly but wondered what people would do in my situation

mjm1971 profile image
mjm1971 in reply to BeeBee79

Hypothetically I would be doing what I’m thinking of doing and going to Tokyo to have the procedure with Dr O

Portugal-2 profile image
Portugal-2 in reply to mjm1971

can you tell us who Dr O is and what is his full name. And where does he practice in Tokyo.Ty

2018NSR profile image
2018NSR in reply to Portugal-2

Dr Ohtsuka. He was trained by Dr Wolf in 2008. Has done over 2000 mini maze procedures with great results. Clamps the LAA . He is in Tokyo. I’d be happy to give you his contact info.

Poochmom profile image
Poochmom in reply to mjm1971

I guess I’m biased here because I had the mini maze a year ago. It was my first line of defense because I didn’t want the inside of my heart burnt up with an ablation and not very good odds of success from what I’ve read on here. I had lone AFib and knew if was a vagus nerve issue. I have been AFib free ever since, no meds, recovery was no worse than what I’ve read on here about ablation recovery and for me it was better as I was up and going in two weeks. I would do it all over again with no hesitation. My procedure was done I. Houston by Dr Wolf.

Nannysue1 profile image
Nannysue1 in reply to BeeBee79

Completely off of subject but which hospital did you end up in Crete if you dont mind me asking?

BeeBee79 profile image
BeeBee79 in reply to Nannysue1

Of course not. It was Ilias Hospital in Chania and after a week I was airlifted to a hospital in Athens which specialised more in cardiology for further testing

Nannysue1 profile image
Nannysue1 in reply to BeeBee79

Only because I was on Crete in agios nicholias when I had my first attack of AF and didnt know what the hell was going on. Heart rate 35 to 220. I was kept in overnight and they ran numerous checks with very antiquated equipment. The hospital was so poor but they were marvelous and i couldnt fault my care.

BeeBee79 profile image
BeeBee79 in reply to Nannysue1

I accidentally went this super private one where it was 1500 euros per night. Luckily I had taken out extra travel insurance just for myself as I when I checked our banking one, it actually didn't cover much and only offered £500 towards repatriation. I would have lost my home!

You must have been so scared :(

Nannysue1 profile image
Nannysue1 in reply to BeeBee79

Yes so scared, I'd never even heard of AF before that but as I say the cardiologist was amazing and so caring. I've always vowed that if I come into any money, I'll be off over there again to donate to that hospital. The xray machine was in a broom cupboard and I had to stand on a stack of books to have the xray. The pads used for the ecg machine were like huge light bulb suckers. The curtains were shredded and air conditioning was having the window open. Greek ladies arrived during the day with saucepans of cooking for their love ones. I felt more cared for there than here in my local hospital. The nurse even bought in a pair of sheets for my husband to make up a bed next to me so I didnt have to be on my own overnight. Unfortunately I have no Greek language and they had no english.

BeeBee79 profile image
BeeBee79 in reply to Nannysue1

Wow what an experience. I was warned by my insurance company that they may move me to a public hospital but because of the cardiac arrest, they couldn’t risk moving me. Our relative who lives there said that they don’t serve food and you have to depend on family bringing it in.

I’m glad though that although scary, it’s been a heartwarming experience. I think daily about the certain nurses who were kind to me. They even managed to sneak my daughter in for a visit despite there being strict Covid rules in place.

I hope you’re ok now xx

Nannysue1 profile image
Nannysue1 in reply to BeeBee79

Yes thankyou. 9 years on now. Ended up with pace and ablate but doing well on it thanks. Hope you get a good outcome too.

Megams profile image
Megams in reply to Nannysue1

~Bless their dear hearts - thank you for sharing hospital life in Greece with a/fib. Makes us appreciate what we have in our own country ~

Nannysue1 profile image
Nannysue1 in reply to Megams

Hello. Well the hospital didn't have all the mod cons and was very basic but the Greek people were so kind and the staff, from the nurses to the cardiologists, were so knowledgeable and professional, they more than made up for it. We love Greece and the Greek people and have visited many islands and different places on the mainland ❤

Megams profile image
Megams in reply to Nannysue1

~It was one place I would have loved to visit - don't think so now with health issues aplenty~

GranmaWendy profile image
GranmaWendy in reply to BeeBee79

oh that sounds so awful! Im sorry you are putting up with that, I think I would give anything a try if I was suffering like that

BeeBee79 profile image
BeeBee79 in reply to GranmaWendy

I can’t bear the thought of how invasive it is plus the risks but something needs to happen. My life has changed drastically and whilst I’ve been doing well on these drugs, I can’t stay on them for much longer. My son said to me “It’s like we have our old mum back” which broke my heart ❤️

GranmaWendy profile image
GranmaWendy in reply to BeeBee79

thats heartrending, I do hope it goes well for you xx

Mumursa profile image
Mumursa

I couldn’t tolerate a BPM at the levels in your hypothesis. Medication keeps mine at less than 100 resting and on low exertion

So if that wasn’t possible I would opt for the Mm/hybrid

I have had the MM/hybrid on the NHS. I knew why it was suggested, who would be doing it and what would be done (more or less)

I would definitely be in your 20%, and I have to continue edoxaban, but I feel stronger, although I have an af burden it is less, and I don’t for a moment regret it

Portugal-2 profile image
Portugal-2

Hi I’ve never heard of a mini haize can you explain what that it and how it is different to an ablation. Also what is the research of its success rate.

Tapanac profile image
Tapanac in reply to Portugal-2

look up mummy luv’s posts she is so informative and been af free since it was done. She had it done through Mr hunter up north somewhere like Sheffield I believe

KMRobbo profile image
KMRobbo

Yes

4chickens profile image
4chickens

yes, as long as I knew the surgeons track record, the amount of procedures they had performed and success rate. Just as well really, as I had one, five weeks ago.

Buffafly profile image
Buffafly in reply to 4chickens

😂

I’d consider it in those circumstances but would want to know more about the risks of the procedure itself. Every medical procedure has risks.

In my own case, I postponed having an ablation until my PAF was enough of a problem for me to accept the risks of an ablation, in particular the 0.5% of stoke during or after the procedure.

Singwell profile image
Singwell

Yes, I'd do it. If AF returns for me and is troublesome I'm considering going to Japan like Saulger did.

mjm1971 profile image
mjm1971 in reply to Singwell

that’s where I’m going with Dr O

Ducky2003 profile image
Ducky2003

I was offered the Hybrid last year, which I agreed to as Im very symptomatic when in AF, until they discovered a mitral valve issue. Now I'm on a list for valve repair and they will do a Cox IV Maze at the same time.Mummyluv and 4chickens have had the procedure done by the same person so they may be the ones to quiz.

Had it not been for the valve issue, I would have definitely gone for the hybrid offered to me.

Jalia profile image
Jalia

All things considered my answer would be no.

Kennyb1968 profile image
Kennyb1968

Go for it!

Tapanac profile image
Tapanac

after reading about mummyluv’s experience with the mini maze I would go for that definitely. Unfortunately I have never been offered it snd if you have on nhs definitely…

Ducky2003 profile image
Ducky2003 in reply to Tapanac

I think it's the kind of procedure you need to push for rather than be offered it. Mummyluv had hers done privately but 4chickens was nhs and had to request it.

Dancing135 profile image
Dancing135

I have done so much research on the alternative treatments for afib, having long term persistent afib and knowing an ablation and a cardioversion would have a very low short term success rate on me and I really hate the thought of taking meds the rest on my life. I was thinking of going to Japan for the treatment like Saulger to see Dr O until I discovered through mummyluv, on this forum, that they do do the minimal invasive hybrid procedure here in the uk on the NHS. So yes I'm going for it I'm on the waiting list.

mjm1971 profile image
mjm1971 in reply to Dancing135

are you under Dr Hunter at Sheffield then ?

Dancing135 profile image
Dancing135 in reply to mjm1971

Yes under Mr Hunter at Sheffield really nice guy. I see him in January just waiting for my date for the first stage Hybrid op. It shouldn't be to long now.

Mrsvemb profile image
Mrsvemb

I would go for the mini maze in a heartbeat. I can’t tolerate many meds, including flecainide.

This week for the first time I have had a five day episode of AF. I contacted my cardiologist after 3 days and he told me to increase Nebivolol to maximum dose of 10mg spread across the day. Yesterday I woke in NSR.

I had a telephone consultation with my cardiologist and he has agreed that I can go back to my normal dose of Nebivolol which is 2.5mg twice a day. The higher dose made me very breathless and nausea too.

My cardiologist had the usual conversation with me regarding ablation which I flatly refuse to have. I said how about the hybrid procedure that Mr Hunter does.

In another thread this week somebody said that a top cardiologist at Bart’s seemed not to know about this procedure. My cardiologist is Divisional Medical Director of the Essex Cardiothoracic Centre and Essex Cardiac Lead for East of England. He was talking of open heart surgery so clearly is not aware of the procedure that Mummyluv had.

Sadly, no time has been given to training surgeons in this procedure in the UK.

I will be seriously considering seeing Mr Hunter in London.

MummyLuv profile image
MummyLuv in reply to Mrsvemb

mr Hunter works with Mr Inderpaul Birdi who is a cardio thoracic surgeon also at the Essex heart clinic. Mr Birdi sat in on my procedure so it may be worth your cardiologist having a chat with him.

Mrsvemb profile image
Mrsvemb in reply to MummyLuv

Thank you. It’s all a bit complicated because I am going to be moving. My bungalow is going on the market this week.

MummyLuv profile image
MummyLuv in reply to Mrsvemb

good luck with your move 😍

DoggieMum profile image
DoggieMum

I know nothing about mini maize and the only hybrid I know is my car!!

CheriAlli23 profile image
CheriAlli23

Hi Matt,

I would do anything necessary to get rid of my AFib. I was just told that I’ve most likely been in AFib since January 2023 (landed in hospital while on vacation).

What is this procedure? Very curious.

Thanks.

CherAlli

Fryguy profile image
Fryguy

The procedure

Dancing135 profile image
Dancing135

At Sheffield General with Mr Steven Hunter.

Lakehouse1 profile image
Lakehouse1

I had an ablation 4 & 1/2 years ago, which eventually brought on Flutter. The inside of my heart was extremely scarred from the ablation. I refused to have another one and had the Wolf Mini Maze last October. Best thing I ever did! It may sound like a riskier procedure, but it’s not much different than healing from the ablation, and I still had to take the meds after the ablation.

After dealing with a-fib and flutter for over 12 years, I am off of all medications and in sinus rhythm. My only regret was that I didn’t do it years sooner!

kocoach profile image
kocoach

It would be whatever answer I received while praying. After all I can't see the future, only one can.

fibnum profile image
fibnum

The first step toward mitigation of Afib episodes is finding the conditions, behaviors and triggers that initiate them. Only then do you really know what behavioral changes and treatments are effective options. Subjecting yourself to generic, one-size-fits-all trial and error treatments seems risky and inefficient. Every individual faces subtly different issues and requires informed, personalized responses. Do your best to monitor your own experiences and try to pinpoint the unique set of interactions that brings on Afib for you.

Divining the source of Afib attacks seems to be an emerging , but still limited, skill set for physicians. You can help them by chronicling your intimate knowledge of your day-to-day life style and associated Afib symptoms.

My problems stemmed from gut issues and possibly too many BP meds.

I have dealt with those and reduced Afib episodes from about every two weeks to none in the last seven months. (knocking on whatever the laptop is made of).

My EP told me a year ago that my efforts to deal with the triggers for my Afib would not help. So far, that assertion seems to be unfounded.

Dippy22 profile image
Dippy22 in reply to fibnum

Someone I get a while back said the trying to find the reason for your AFib was the path to madness. At the time I poo poo’d that notion - I’m a firm believer that everything happens for a reason. However over the past six months I’ve not managed to identify any particular trigger - eat/don’t eat, then it can wake me up at 2am, then it’s triggered by me tripping up the stairs, or switches off by being shocked by a big spider! Then I thought it was cream cakes, but have eaten them since with no AFib. 🤷‍♀️

I’m completely flummoxed, although I’m pretty certain it’s vagus related.

fibnum profile image
fibnum in reply to Dippy22

I am not qualified to speculate about your triggers, but I believe that it is worth study and analysis of detailed information from your ongoing experiences with it. If you need treatment to protect you from harmful effects of your Afib, you should certainly discuss them thoroughly with doctors and consider them. I assume that your heart has been examined for any structural defect or damage that might be present.

Your examples seem to be connected to some kind of heart sensitivity to the startle reflex. There are a couple of related studies reported online. Look up "startle reflex heart". I don't think they connect the dots to your situation, but they might suggest a direction for further study. For me, it seemed to be irritation of the vagus nervous system from chest gas arising from constipation, bloating and indigestion, usually over a build-up over 2-3 days. I also suspect that my BP meds exacerbated my heart's susceptibility to the gas irritation. My theories are untrained, homegrown conjectures derived from my experiences with the onset of Afib episodes. All I know is that the reduction of those suspected triggers has meant the welcome absence of Afib for over 6 months.

I cannot assure you that you will find the answers so easily, but I wish you success.

ButchersPencil profile image
ButchersPencil

Hi mjm,Yes I'd probably go for it. Not heard of maze procedure before, so thank you.

MaryCa profile image
MaryCa

Mini maze...no AFib...no potential heart failure...

Dippy22 profile image
Dippy22

I’d quite happily go for it as my AFib is out of control and NO drugs are tolerated or have any effect.

I’m currently taking Amiodarone prior to having my first ablation on the 22nd June. Keeping fingers crossed I get ‘done in one’.

MummyLuv profile image
MummyLuv

key for me on your hypothetical situation is the failed ablations. If I was PAF I would give catheter a go first but if unsuccessful like you I would do mini maze. I’d look for a surgeon whose approach is suitable for PAF and who has experience as this is complex surgery on a beating heart

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