So I’ve been at Barts for 2 years since I was diagnosed with PAF and I’ve had 2 unsuccessful ablations under Dr Earleys team , I must say they have been brilliant all along and can’t fault them .
I have also been doing research re the mini maize and I’m close to going to Japan to have this procedure done under Dr Ohtsuka . A well known specialist who has carried out over 2000 of these procedures along with blocking off the left appendichure to avoid stroke .
so before I spend £18k I thought I would consult with the main man at St Barts first to see what he thought .
A) he didn’t know who this Dr was in Japan and more alarmingly he didn’t know what the mini maize was and asked me to explain it
B) he said blocking the left appendichure was the same as taking anti coagulation in regards to reducing risk stroke , although blocking is 95% and Anti co is only 70% . Chance of stopping it ?
C). He said the mini maize is the same as what they are doing so no real advantage of having it done . Every bit of research I’ve done says mini maize is better chance of success ??
D) I said can I try not taking Bisoporol as my BPM is 48bpm average on 2.5mg of bisop and he said yes reduce first and then see what happens if I take nothing . Does anyone else not take any beta blocker at all with PAF ??
I was really surprised by some of the responses I got and wondered what your views were on each of the above please .
I’m not looking to knock any Dr or start a which hunt as I know this disease is individual to us all and it’s medically fairly new in treatments etc etc but I found the answers I received a bit contrasting to what I’ve read on here and researched etc etc .
thanks
MattYou
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mjm1971
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OK - I can understand your confusion and sounds as though this Dr has undermined your confidence in going for the mini-maze.
1. Closure of left atria appendage - very personal opinion but I would be quite cautious about this as there has been some recent evidence that it can cause problems long term and is really only used for people who cannot take any anticoagulants. The latest report I read that some people still have to continue taking oral anticoagulants, even after procedure. I really don’t know enough about it but my understanding is that it is not intended to help stop AF - so I am with your doctor there! What that report did highlight was the people it may not be suitable for - I’ll see if I can find the report.
2. Mini-Maze is fairly uncommon in UK and many specialists tend not to know much about anything outside their own speciality - I’m sure you know that mini-maze is a surgical procedure performed by a chest surgeon and ablates hard to reach areas on the outside of the heart so lack of knowledge or lack of awareness of another doctor in Japan wouldn’t particularly worry me. What might is that he believes mini-maze to be the same as ablation - same technique - different method and ablation only goes inside the heart whereas many AF is caused by areas outside of the heart which catheter ablation doesn’t touch.
3) I stopped Bisoprolol back in 2014 for good, I had stopped taking it many times in the preceding years because it made me feel SO bad I couldn’t function at all. It took many rows with several doctors before a good reason was found why I MUST not take so there is now a Red Alert on my medical file to never be given ever. I don’t take any heart drugs but do have a pacemaker but still get AF and my HR does go high, but not nearly as high as it used to. My resting HR average around 65 so I can’t imagine how bad you must feel with low HR in 40’s. I have yet to hear a convincing argument for ME to take Bisoprolol but doctors seem wedded to prescribing ????🤷
The affects of beta-blockers in general I believe (very personal experience here) is detrimental to my health and well-being. Others will have different experiences and find them helpful - very personal and if they don’t help you I would push your doctor to stop - very, very gradually - better to have you doctor on side - I had 2 that just refused to treat me because I refused them.
Only you can choose what you think is right for you but choosing is difficult because you can’t go back, once committed.
I believe the best person to offer informed comment is MummyLuv , now I’ve tagged her hopefully she will respond.
There are ongoing studies that show that LA appendage closure has had disappointing results for some who have had to go back onto anticoagulants after developing clots forming around the device when something like Watchman is used, therefore the criteria for who is eligible needs revision.
Now this may not be relevant to the procedures talked about in this thread as I understand it, the LA appendage is removed? Even so, there is some concerns that the appendage can play an important role and not enough is understood about it’s role or consequences of removing. As always, the will always be differing views.
The statement also includes precautionary recommendations. It advises against using routine closure of LAAC-associated iatrogenic atrial septal defects and states that combined procedures with LAAC, such as structural interventions and pulmonary vein isolation, should be avoided because randomized controlled trial data are pending.
Hmmm. It is individual. However the mini maze Is different to catheter ablation. Am told by my specialist that the minimaze has a much higher success rate than catheter ablation because it can access more of the rogue impulses . Of course there is a maze operation which is open heart surgery which does the same thing and more of that is carried out in the UK. The minimaze is far less invasive and therefore has a shorter recovery time.I've just seen my surgeon and spoken to him on the phone as he is going to perform a mini maze on me. My best chance am told. There was no mention of any negative effects of the Atrial flap removal so can't help with that one. I'm pretty sure he would've said if it was a solid body of research.
As far as efficacy of stroke prevention. The flap removal definately has a higher prevention rate than anti coag. I was told by my surgeon I would not need to take anti coag post mini maze op.
Beta blockers. Well I tried three. They floored me and made me very ill. So instead I take a calcium chennel blocker Verapamil.
I think It really comes down to what suits your body best. Many find beta blockers hard going but not all.
Going with out meds..? Not possible for me. My heart would race at 130resting!! I felt pretty poorly before drug treatment. Unfortunately am getting worse so mini maze for me is my best option. I have been refused a catheter ablation.
All individual so you have to weigh up what is the best for you. My advice would be to consult different doctors. See the different takes on it and then you are probably better placed to make an informed decision for you. There will not be a perfect decision unfortunately, each has its pros and cons but I its what you can live with afterwards that counts.
Hi Matt, you already know my view on LAAO and sorry but I still dont agree to it being a good idea other than for a very few people who can't take anticoagulants for reasons already explained and then only as a last resort.
I know that Matt Earley is one of Richard Schillings team at Barts and on the few occasions I have met him at events he struck me as a "good egg".
I do find it ineresting that both Dr Wolf and Dr Ohtsuka seem to have such devout followers so either they have found something special or they have very good PR teams. Sadly, only you can decide if the considerable financial outlay is worth finding out.
hi Bob , thanks for the reply and I would like to state my post is in no way a black mark against the Dr’s or St Barts they have all been amazing to me
in my view it’s because their surgery is different, it’s actually not a mini maze at all, they don’t do a box on the back of the heart (maze). Their surgery does pulmonary veins and ganglionic plexi plus the left appendage occlusion. This approach works well for PAF and they can get more complete scarring from the outside than an EP using a catheter from the inside, they can also see what they are doing to position scarring in these areas and test for GP triggered afib using a pacing pen. So for those wanting a ‘one and done’ approach to PAF and are prepared for the longer recovery then it becomes a good choice. For people like me in persistent I’d need a follow up to their procedure by catheter to increase the lesion sets they do, in fact Dr O would not have accepted me as a patient as I couldn’t convert to NSR by cardioversion even for.a few seconds so his surgery would not have been effective for me. Most surgeons are doing a minimally invasive maze, they are not.
An interesting post Matt which will probably arouse a lot of comments. In truth, I know very little about the various mini maze variants other than what pops up here on the forum. Whenever I have raised it with medics, it tends to generate a response not too dissimilar to the one you got from Barts. For those who may not know, Barts is one of the leading London Hospitals which has a reputation for providing excellent treatment for all heart conditions.
Here in the UK, we seem to have a different approach on how we share information on our medical experts than they do in some other countries. Since 2014 I have had one cardioversion, two ablations and with a bit of help from Flecainide in the early days, I have been in sinus rhythm virtually ever since. Many UK members have had similar experiences and like me, have absolute confidence in the medics who treat them. Although we are happy to share our experiences with others as and when required, we tend not to adopt the same approach in promoting their skills as those who choose to share their experiences of some forms of mini Maze treatment outside the UK.
Of course there is absolutely nothing wrong with that, this forum is here to share any and all information which is likely to be of benefit to members from around the world. From the information we get from the UK, the mini maze treatments available in the UK are extremely difficult to access which for many is disappointing and unfortunate. If the benefits this form of treatment appears to give to patients with persistent AF is sustained, it is hoped the situation will change so that more will benefit.
You say you are considering following the footsteps of another member by having a procedure in Japan. As far as I know, the costs associated with this particular form of treatment in America and Japan have only been mentioned by one person. The figures quoted for the USA were $250,000 compared with £18,000 (including travel and accommodation for 5 weeks) which assuming the treatment is, in fact similar, it seems quite extraordinary and therefore might be worth exploring.
Many will have seen the relatively recent video where the two doctors involved with this procedure clearly have a high regard for each other but what was interesting was when it was mentioned that the procedure is not entirely embraced by EP’s in America either. It occurred to me that the two Doctors came across as pioneers in their field and as such, they have acquired a following of passionate supporters who seek to spread the word and only time will tell if the procedure is successful and becomes more readily available to the masses.
I like to think that I’m an optimist, and there are early indications that the procedure may be more effective for some patients with persistent AF but if I were in your shoes, my overriding fear would be, what happens if something goes wrong, by that I mean would the NHS pick up the pieces regarding treatment carried out in Japan.
Before I hit the send button, I checked and saw that you have received 4 very good replies. I echo CD’s suggestion that you talk to MummyLuv who has a very balanced view and appears not to be influenced by the hype….good luck with your deliberations.
You have a lot more faith in medics in UK than I FJ!
As I said previously - most EPs aren’t aware of mini maze because that wouldn’t be a procedure they would ever have experience of - it’s the thoracic surgeons who have. There was a presentation at Patient Day - circa 2015 - on joint approach I think it was Imperial?
I think the main reason it’s not common in UK is cost as it is a procedure which requires intense resources and therefore in times when resources are stretched it’s not going to gain much traction unless it can be proved it’s unlikely cost effective - times we live in.
hello 👋👋 we have chatted lots and lovely to hear you are close to making your decision.
I’m not aware that anyone at St Bart’s does mini maze or convergent procedures and so I am not surprised by your EPs response. Many EPs in this country will never have heard of a mini maze only the maze provides done by open heart (Cox maze) which there are many cardio thoracic surgeons doing when they are undertaking other heart surgery. Plenty of skills in open heart version here in UK.
Mini maze though takes a very skilled surgeon, there are very few who have invested the time to learn the technique. With two failed catheter ablations I personally would be considering mini maze. There is a surgeon at royal Brompton doing covergent and we have already chatted about my surgeon who given you are England you would access via the NHS with a GP referral. I do believe we will see hybrid growing in popularity in the UK (I shared EP training videos last year, full of great stats from research for both catheter and hybrid treatment).
I had top EP here locally, had never heard of mini maze. Told me and put in writing that I should not do mini maze. Now I have done it and he has researched it he now says he wishes he could offer it to his long term persistent patients here.
In answer to your other questions
B) I’ve struggled to find the figures you quote and I’ve heard dr wolf quote anywhere in a randomised trial. There are small scale studies on left appendage closure which are very positive and plenty of studies on warafin and more modern anticoagulants. The function of the left appendage is not understood and some hospitals will tell you this directly. However of those who have had LAA as part of open heart surgery the risks quoted in the research are surgical and no later risk has been identified (yet). I did not want to be on anticoagulants due to previous internal brain bleed and so for me it was the right thing to choose LAA. I’d be really interested to read the research you refer to CDreamer so I can be aware what to look out for in future if they have identified a risk.
C) that is absolutely not true! In the future it may be with new techniques, who knows what pulse field may yield but right now mini maze is able to get a more complete lesion from the outside of the heart than an EP can from the inside. In PAF there are studies that say that ganglionic plexi play a part in AF and these are on the outside of the heart, for persistent recent studies have shown that ablating GPs does not improve the surgery outcome and so most mini maze surgeons no longer do this . I could go on… depending on where your afib originates there are areas that a surgeon can’t reach (eg ismas lessions) and hence why sometimes a follow up catheter ablation is required.
D) I could not tolerate beta blockers and was put on digoxin prior to having my surgery.
Being in PAF you may not need the box approach (maze) that is done by the vast majority of surgeons in the world doing mini maze, you most likely don’t need a hybrid designed to do full cox maze, you may benefit from ganglionic plexi ablation which many don’t do anymore as they focus on mini maze for patients in persistent afib not PAF. Therefore I totally understand why you may opt for Dr O as he does GP ablation and pulmonary veins and does not do the box (maze).
It’s a personal decision. You’ve done your research. Don’t be put off by the EP as it will be ignorance rather than an educated position. That is meant in a literal way not derogatory.
Good luck, you will do what is right for you.
PS on the point someone made above when I was considering going to Dr Wolf in the US my EP even though he disagreed with the approach said he would do all my after care. Just make sure you ask so you know you have support when you come back
I had an RF for PVI ,Flutter and Box isolation by my EP. What is the difference between box isolation during the mini maze and box isolation during an RF ablation . I get a bit confused 🙃 . X
it’s actually quite hard for an EP to do a complete box from the inside of the heart. They have to be careful of oesophageal injury so they only achieve the box less than half the time. Surgery is much more effective (although if you need more than the box and need some of the other cox maze lines then these are done by an EP). You may well have a lovely complete box though 😍
Thanks for your reply! The EP only does this ( PvI, Flutter and Box all in one go) and does about 600 a year as opposed to just PVI with the first ablation. He hopes it stops people coming back too soon. It's sort of prevention as I didn have Flutter either . However I had Paroxysmal Afib so RF ablations are fairly successful in these cases. So far so good but I know it will eventually come back but I hope it is years from now 🤞🤞. But I follow your posts closely as it interests me if ever I get persistant Afib. Also Pulse Field seems very interesting.Take care and I hope you continue to be Afib free.
Having so much done in one go was a bit tough on the ticker - I think the vagal nerve was irritated and I had digestive troubles after and lost 12Ibs in 4 weeks . And some rhythm problems . But all is settled now phew!
I have had lone paf for 9 years now and it comes on exactly every 3 weeks, the times between getting shorter. My natural waking heart rate is about 44 Bpm and in afib prob gets to about 100. I can’t take anything at all other than apaxiban. As if I took bisoprol, and I did try it, my heart rate drops far too low
I have had 2 Ablations for afib and still get episodes so, like you, I'm thinking out of the box and getting the Wolf mini maze in September. I don't understand why people can't wrap their head around the fact that Ablations on the inside of their hearts doesn't work most of the time and we are at the same place where we started. I will never let them burn the inside of my heart again because it doesn't work. At least for me and almost everyone I talk to that has had it done. You are doing the right thing at trying to cure your afib. Blocking the appendage is probably the best thing you can do to to protect against a stroke coming from the heart and appendage can be a source of your afib too. The people I spoke with said the mini maze was the best decision of their lives. Does everyone have the same outcome? No, but look at the track record on the Cath Ablation. Not very good. Cheers and good luck with your decision.
research says catheter and mini maze have the same outcome for PAF, in the 80%s. For afib that isn’t PV or for persistent afib the catheter success rates start to fall and mini maze is around twice as successful. For very stubborn persistent afib a combination of both approaches is required. I don’t think it’s correct to say catheter doesn’t work for all
Well, when it doesn't work that means it doesn't work at all. Most of the people on this board haven't had good results the ones that do get good results comment very little because they want to move on with their lives and forget about Afib. Okay, it's fair to say the success rates are very low.
brandue I chose mini maze as I was persistent and the success rates are much higher. I still disagree that catheter ablation success rates are very low, that is only true for certain cohorts. I think it’s important those of us with unsuccessful catheter ablations who go on to choose mini maze don’t take away from the high success rate catheters have for earlier stage afib. I shared this set of videos which discuss many research studies through the different stages of afib .
I understand your point and appreciate your feedback, but I only had 3 afib episodes before I decided to get the Catheter Ablation. It didn't help and the episodes got more frequent. However, the second one a year after the first did help me for about a year and a half. Unfortunately it started again. I'm lucky because I convert back into sinus on my own. I'm at a point in my life where I'm done with them going in my heart. I just saying when you get repeated failures it's time to think of another option.
and given your history in my humble opinion you are making an excellent choice, Dr Wolf and Dr O’s procedures should have a very high success rate for you in PAFwithout the need for any follow up. I hope to follow your story over in Sandi’s WMM group
yes, Dr Ohtsuka he does the same as Dr wolf (who trained him) but uses a more minimally invasive approach, as you know 😂😂 coz you are going to him. I am always worried about misspelling his name 😍
yes I have had a zoom call with him but he only quotes me as 70% chance of cure . Not sure why as I’m only 52 with no other co morbidities . Others have said he always underestimates his results etc
I’m defo PAF and had 1 cryo and 1 RF ablation which have failed . I get AF once every 4-6 weeks which lasts anything from 6 hours to a few days ,
to be honest my brain is frazzled by it all and I don’t know what to do anymore . Stick with Barts and this ethanol injection they want to try next or pay £18k for a trip to Japan and Dr O 🤷♂️
I take it the ethanol injection is because they believe that your afib is coming from your vein of Marshall. It would be good for you to ask why they believe that, then check with Dr O that he will ablate your vein of Marshall if needed. I had mine ablated as part of my mini maze.
I will just voice my opinion from experience with the MiniMaze. I had PAF for three years beginning in 2019 with episodes every two months. I did research on ablations and followed this forum and I decided the for me the success rate of catheter ablation and the burning up of the inside of the heart was not for me. I pursued the WMM with Dr Wolf last year as my episodes were then coming every five days. I knew I was headed for persistent. Dr Wolf quoted me a 93% success rate and I haven’t had one episode since surgery.
I understand some people, especially with previous ablations get flutter as that is a side effect of ablation. There is an ablation that is done for that on those unfortunate ones and it seems to take care of it, at least from experience I’ve read of people going through that.
My understanding of the LAA is that it is the beginning of the heart forming in utero. It can be the cause of AFib in 20% of people and lots of people with high blood pressure have been able to get off bp meds after occlusion. I don’t think it’s understood why but it happens.
I would do the mini maze all over again without hesitation. Recovery for me was not any worse than what I read about ablation.
MattYou I can only share my experience with beta blockers for PAF. They are too toxic for me at any dose and I’ll never take Bisoprolol, Metoprolol, etc, ever again. They crash my blood pressure and bpm, to the point where I can’t walk, they negatively impact my vision, and most acutely and dangerously, cause coronary artery spasm which could rapidly kill me! Perhaps they work safely for some people but not for me!
I’m under Barts. His team as done many ablations for me in the early 2000s in fact one of the mentioned first diagnosed my arrhythmias and dilated cardiomyopathy. I received excellent care from them. They would always draw me diagrams and explain what’s happening with my heart and what they plan to do.
I’m going back to their team soon for VTs after being with the heart failure team for years, so I will see how things have changed. Just seeing their names brought back memories. Sorry I don’t know anything about mini maize procedures.
No I didn’t find what you said derogatory. You was explaining something about treatments I don’t understand because I haven’t had it done. I just felt an excitement hearing there names. This is a support group. I’m not on here to attack anyone just to support if I can. The only reason I responded was because their names took me down memory lane. I found what you’re saying interesting.
Please check out Drs Yisachar Greenberg & Israel Jacobowitz at Maimonides Medical Center in Brooklyn, NY in the States. Maimonides was where the first heart transplant in the US. was done, and while they may have mixed ratings overall, being in a very poor area, they are strong in cardiology. I
In 2020 I had what they call a convergent hybrid ablation, which involved basically a mini-maze procedure and ablation, with left atrial appendage closure. When I went back to see Dr Greenberg for a follow up last week he told me that they have further refined and updated their procedures with good results,
Just want to provide you with some other travel options!!
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Peer-Reviewed report by Dr Wolf (Wolf Mini Maze).
Paroxysmal Atrial Fibrillation without anticoagulant
