For all who are interested in the keyhole mini-maze (thoracoscopic) technique, Dr Wolf and Dr Ohtsuka are hosting a live Zoom discussion.
For the record, I was a UK resident until I relocated to Greece. For the last five years, I suffered with AFib which became progressively worse and in the last months I passed out several times - once with an 8 second pause in heartbeat, when the heart was converting from AFib to NSR.
I travelled to Japan four months ago to have this procedure with Dr Ohtsuka.
I am three months + one week out since the operation and have been in NSR all this time, barring a few days of tachycardia immediately after the procedure.
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saulger
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Yes it was but it must have been going on for a while because I had dizzy spells many times just before I converted to NSR. I am glad that it is all over for me. Thank you.
Great to hear you are doing so well. I am relatively new ( and quiet) on the forum but have become very interested in both Mummyluv and your mini maze journey and success, wondering if it might be an option for me to pursue.
Thanks for posting about the presentation, do you know if those interested need to register or can you just click in on the actual day?
Thank you Jim. You will remember that I tried very hard to sort my AFib using the "natural rhythm method", but nothing worked and it was just getting too much. I did have an easy time of it. I was paroxysmal, but at least five years with episodes, which were every 2-3 days in September and October 2022.
You say that it's not for everyone, but there are very few conditions that would preclude its success. A 35 year old lady from Georgia (Danielle) who had been persistent AFib since age 14, I believe, just had it done in Japan and in NSR since the procedure.
Alison (MummyLuv) who was persistent for five years if I'm not mistaken is some ten months post-Op in London and in NSR.
I think one other fairly significant reason why it’s not suitable, or perhaps available, especially here in the UK, is that currently it unfortunately appears to be unavailable to virtually anyone on the NHS. The costs are such that the vast majority of AF patients here could neither fund the procedure or afford the level of private insurance necessary to have it done. In my opinion , this should not prevent anyone from be made aware of treatments which are available as long as they understand that unless they are prepared to rob a bank first, it is unlikely to be something which will help them in the UK any time soon. We can all pray that that situation changes……
I thought that Jim was referring to patients who are not suitable, leaving the cost and availability for another discussion. It worked for me, it was dead easy - I walked 10-12kms on the day that I was flying back (four weeks post-Op). I believe that MummyLuv wrote that it was not traumatic for her and Danielle, who had a mini-maze just 34 days ago, after some 20 years being persistent is also in NSR since the Op. Danielle was a lot braver than me, and a few days after her Op visited the hot springs outside Tokyo where the Snow Monkeys have a ball.
This is what she posted 3 days ago:
"32 days since my WOP!
Can I just take a moment to say how good I feel?
Got the boys up and ready for school.
2.5 miles on the treadmill.
Cleaned the whole house (dusted furniture, cleaned all mirrors and windows, wiped cabinets, counters, etc)vacuumed, swept, and mopped floors.
Prepped dinner.
Cleaned Paxtons room.
And…I STILL HAVE ENERGY. I’m not exhausted. I don’t feel like I need to nap.
Having a normal, functioning heart is THE BEST THING EVER! I feel like I am becoming more of a normal person as the days go on.
For so long I have felt like I was lazy- literally feeling like I have no energy to complete anything. The days before heading to Tokyo I was napping daily. I felt like I was never rested. Everything has changed now...and I am so so grateful. Life is good!"
I think everyone is really pleased for you Saul but perhaps you are one of the lucky ones who has the wherewithal to make it possibly. I’d love to have an Aston Martin but funds restrict me to my trusty Toyota Avensis which is cumfy, reliable and costs little to run. Not to dissimilar to the difference between the treatment you worked so hard to achieve and my Catheter Ablation which has kept me in NSR for the past 3 years or so.
Perhaps we should try promoting the benefits from having a catheter ablation…….stay well
FlapJack, I am not posting to gloat. I too deliberated for several years before I took the plunge and was pleasantly amazed how wrong I had been about what difficulties I might encounter.
And, of course I am lucky to have been able to afford the trip and also to have the time, energy, and support to undertake the long trek into the unknown there and back.
I just checked and my total costs were twice that of a 2012 Toyota Avensis 1.8 V-Matic (AutoTrader). As I walk everywhere in Athens or use the bus, I can live without the car...
I sincerely wish that all catheter ablations would produce 100% success rates but even Professor Schilling (gold standard to some) reported that in 2018 he achieved 63% success for paroxysmal and 58% for persistent, both after a single treatment. He reported better results lately.
I am sure we all want what works for us. Our individual circumstances, talents, and mindsets also vary widely but we aim for the highest common denominator.
I think Shilling's recent results are now over 80%. For me, that's good enough, with the benefit of a less invasive procedure, without a hospital stay, under conscious sedation versus general anesthesia. I second what FlapJack said, above. Many with catheter ablation, report the same results you and other mini-maze patients report. So, money aside -- I can get a mini maze for free with my insurance in the US -- I see pro's and con's for both procedures. If I was long term persistent, permanent, or had several failed catheter ablations, that would probably tip me more toward mini maze, but I do respect the decision you made and happy for your results.
Jim, you and I have spoken about this a few times before and also messaged each other. As I wrote to FlapJack whatever works for each person is the right route for them.
You wrote that it doesn't work for everybody and I was curious to hear what circumstances (barring expense and availability) would preclude a mini-maze (I know of just one - left atrium size >55mm).
When I said that mini maze "isn't for everyone" I was not talking about what "precludes" i.e. prevents it from happening. That would be a question for Dr. Wolff or whoever performs the procedure. I just meant it might not be what everyone chooses, even barring expense and availability. I gave some of my reasons in the previous post.
Be well Jim. I wish you the very best, as I do FlapJack and all of us who are under the cosh of AFib. My posts are intended as general commentary from my specific experience.
Ow, ow, ow Flapjack! Be grateful if you didn't pour icy water on this amazing outcome. Maybe its not been easily possible in the UK, so far, to get mini maze......but its amazing how things change & what may be difficult could easily be far more readily available in a few year time. Eg Gluten Ataxis......not possible, wasn't even tecognised a few years ago. Now an established fact with 2 centres in the UK specialising in it, with specialist tests.
I have to say if I'd been in Saulgers position I'd move Heaven & earth to find that funding, taking money out of the capital in my little home if necessary. You can't beat being well & I'd gladly forego a car anytime if I could have that.
When I started to pass out once the AFib was converting back to NSR. due to the heart stopping momentarily, it was a "heaven and earth" moment to take the plunge.
The best part is that it wasn't that expensive (I am 76 and long-retired) , and it was mostly painless after the first hours, with a very quick recovery.
The message that I try to convey is that, in may cases, AFib is not a life sentence and can be dealt with the a suitable medical procedure. So, don't give up friends, and best wishes to us all.
Absolutely Saulger. I seem to have been gathering health problems in the last 10yrs. Always fit and healthy before, no ops no nothing....lol....then a raft of them! It has led me to believe that doing your own research is incredibly important as is being prepared to look outside the box & jeeping an open mind. It's led me quietly (well not so quiet sometimes) to be assertive and take control & listen but take all I'm told with a pinch of salt. Consequently have found ways round medical problems that would not have been suggested to me, having to lead doctors, especially GPs through it & to walk away from so called specialists who were frankly very rude & arrogant! The good ones are never like that!
I'm so so so glad that what you chose to do worked out well for you. And may your health remain good here on in!!
And, I would challenge that Afib is, indeed, a life sentence. It changes you completely. Slowly, over time, you totally forget how it feels to have full heart health and a stronger life in everything you do. It even changes how others interact with you.
I have a dual chamber pacemaker - unfortunately, a decision was made years ago in order to tolerate the antiarrythmic meds but to no avail, However, because I still have the pacemaker, my EP can interrogate it and I can be assured that I have been afib-free for the first time in more than two decades! (WMM October 2021.) And the bonus: at my last cardiology appointment, a new cardiologist was surprised to learn I was 72 and thought I looked more like 55.
Bravo to you. Yes, AFib when you least expect it and at all hours of the day plays with your mind, not to mention the damage caused to the heart.
It seems that all is OK with you and you are AFib-free. I am also the same for the past three months + one week, after a mini-maze procedure, which is the longest period since I was diagnosed in 2018, and I hope that it will last for many years.
is your flutter typical flutter or atypical flutter? Atypical flutter is addressed during the mini maze as it is the left atria. Typical flutter is on the right and you are correct about probably needing a flutter ablation.
My question to you though and it’s just a question not to be antagonistic is why would you want to possibly have multiple ablations with lower success rate rather than one mini maze with possible flutter ablation with Dr Fahed who has tremendous success with the flutter ablations. I’m just curious as to you thought process. I know the recovery time is an issue for you but what else drives it?
I probably have typical flutter on the right side, but possibly atypical on the left. As you probably know, impossible to say unless an ep study is done by an ep with catheters. So I would still need a catheter ablation on the right side and I also am not sure that a minimaze will necessarily take care of atypical flutter any more than a PVI will, although in general, ablating the pulmonary vein has a good chance of stopping atypical flutter, but not necessarily. So given my situation, I don't see any fewer procedures with mini maze, but possibly more.
The recovery issue is not small potatoes. Five days in the hospital, a lot of pain and discomfort for many and aflutter requiring cardioversion for some. I'm getting this from patient stories on the WMM web site. Mini Maze is also done under general anathesia versus conscious sedation for cryo. These are not small issues, especially for someone in their 70's.
If I were younger. If afib was more of a burden. If I didn't have flutter. Then I might be leaning more to mini maze. I think it's a great solution for some, just not for everyone and not for me, at least for now.
Given that I haven't heard from my ep's office in over a month re scheduling an ablation. And if it wasn't for that fact that I also have flutter, which means I'd most probably need a catheter ablation anyway, I might be tempted to at least have a consult with Dr. Wolff. And I do understand your advocacy for mini maze. It does offer a lot to many.
Delighted for you Saulger........People like you pave the pathway for others so personally I am delighted for you. Enjoy........you bring hope for so many.
Waveyline, thank you again. Both MummyLuv (Alison) and myself had been researching the various options for many months. Three things were important in my research:
1. The success rate. What percentage of patients were AFib free after a single procedure. I am a self-funder and would find it more onerous to have multiple catheter ablations.
2. How many treatments has the medical professional carried out (lifetime and in the past year). 500 procedures lifetime and 50 per year was the minimum for me.
3. Can I read many first-hand testimonials about the first-hand experience of patients, their outcomes, difficulties, recovery, and long-term stories.
I would accept ANY treatment with a high rate of first-time success, with a very experienced practitioner, and the support of many dozens of ex-patients.
afraid not and manager says there not even scheduling any duel procedures. Emailed re splitting the surgery so minimaze first then atypical leftside flutter ablate later. What about you any news.
Sorry to hear that. All these delays must be stress, I know it would do my head in ! Currently no news or dates for me either. I’m just trying to get on with it and hope something comes through. 🤞🏼
So shocked at this attitude of the hospital. I had to have complex surgery which involved two surgeons.....they plan ahead for such events. You've been offered this procedure so it not on to say that theyre not booking dual procedures. I'd be inclined to contact the Consultant to express your concerns. Generally speaking I find hospital managers are a cold bunch who don't understand the impact of their decisions. Your surgeon will!!
Many thanks Paul. If I come across as brash, it is my exuberance that has taken over. I cannot say too much about the psychological relief at not having my heart at the forefront of my being. Previously, I was forever cocked to follow what the heart would be doing at any moment, and this is all in the past. I am no longer even aware that my heart is at work. It is all calm and peace. Not to mention my recent fainting spells because of pauses in heartbeat.
FlapJack is jokingly exaggerating that it is an Aston-Martin treatment. It is a very average price of a new car.
The total for me including everything for a five week stay in Japan, with flight, hotel, hospital, medications, tests, food and incidentals came to less than £18K !
Now thats cheap!Im glad you eventually,came out with the price,i visit the advanced prostate site on health unlocked & you see people going to the marsden hospital london & spending 80 grand for a course of 6 injections of lu 177 & no gurantee it will work,so 18 grand to sort your prblem was a snip, well done 😀👍
Dear Nugger. I was hesitating whether I should mention the money, but FlapJack (whom I respect) said it was an Aston Martin, so I had to say - not quite !
I have prostate issues and was quoted for an outpatient treatment lasting 20 minutes some £15K in Harley Street, and I was in Japan for five weeks all in !!!
Read below what Goosebumps wrote...I could have stopped off in Turkey.
It all worked out great and I hope it lasts and I also want to help, if I can, anyone who is feeling lost with their AFib. Best wishes, waveylines. Saul
So pleased that your mini maze has been a success. It must be so good to get your life back. I was and still could consider going the same route as MummyLuv with Mr Hunter.
For now, I seem to have things under control, having identified a good few food intolerances that were triggering episodes.
If this changes, then I will definitely pursue the Mr Hunter route in London.
Thank you very much Mrsvemb. I am also intolerant of high FODMAPs, which would lead to episodes. I had not touched alcohol and caffeine for several years because they would precipitate AFib episodes, and was able to drink a full bottle of wine over the past week, and two coffees yesterday with no episodes and no discomfort.
I’m having a mini maze procedure with Dr Hunter the same surgeon as mummy luv. And I’m on an nhs waiting list as I cannot afford the private costs.
I’m 47 and in persistent AF I’m fit and have spent 37 years surfing to a decent level. For me my persistent AF although well tolerated is affecting my quality of life and being on anticoagulants is making my pursuit of surfing far more dangerous.
On top of AF I’ve also been diagnosed with coronary artery disease with moderate stenosis of my LAD. For me it’s likely that at some point i will need a stent and more blood thinners aspirin and another anti platelet. When this happens if I’m on an anticoagulant at the same time my bleed risk is going to be very high. Triple therapy wouldn’t last for too long but long enough.
For persistent AF an rf or cryo ablation has much less of a success rate it can be lower the 50% it also often means taking anticoagulants long term and potentially having multiple ablations. Or if you’re tolerating your AF well they will certainly push for no more interventions and just take the pills.
If I didn’t have to take anticoagulants and or there was a safer drug that reduced stroke risks 90% + then maybe I’d just stay in persistent AF and tolerate it. I don’t have a very high heart rate. But with my coronary disease as well and the risks of triple blood therapy, then the occlusion of my left atrial appendage and the reduction of my stroke risk being over 90% is appealing if not scary.
Af affects us all physically and mentally in different ways it’s mongrel disease as Bob d points out. I’m scared to have the more invasive surgery against NICE guidelines but I also think these guidelines will slowly change especially in the treatment of persistent af.
Anyways that’s my two pence worth. Wish it was easier for all of us ! Current state of the nhs I will likely be waiting many more months before I get a date for my mini maze.
Great to hear you’re well Saul ! Long may that continue. Very brave travelling to Japan for such a big operation 🙏🏽
Hello Raff. I was lone AFib, paroxysmal and no co-morbidities and hope that Mr Hunter will soon be able to treat you and 4Chickens. I believe that if he accepted you then it will be successful.
I promised you an update: 3months+ 1week after my Op and I am in NSR all day and every day. I stopped taking the 50mg Flecainide maintenance dose and am not taking any medications at all. The left atrial appendage was removed and stapled and no anti-coagulants needed. Lucky for me as a heavy German fruit juicer fell on my head from the shelf two weeks ago and, who knows...
My cousin is visiting Athens this week and I drank a bottle of wine in two sittings this past week and two coffees yesterday, and not a dicky bird...
I am not posting my story to brag or gloat but to inspire confidence that there is much that can be done to improve the lives of AFib sufferers. No need to suffer alone and we must pool together.
Normal Sinus Rhythm without arrhythmia, seen as regulartly spaced heartbeats on the ECG. I was 53 RHR (resting heart rate) before my mini-maze and now it's 65.
My diet is quite difficult. I am intolerant to gluten, dairy and soya. I have not had alcohol or caffeine for 12 years. Have to avoid aspartame.
I do manage the diet ok. I like normal food, including spicy which I am ok on. No way could I give up meat and fish. That would drive me straight to a mini maze 🤣.
awesome Saul! It takes a bit of bravery to seek mini maze when the standard of care is catheter ablation 💕💕
it is correct there are similar success rates reported for catheter ablation and mini maze amongst those with paroxysmal afib, at that stage it is personal choice. Once you move to persistent esp long term persistent the mini maze has significantly higher results.
Sadly I agree with flapjack’s sentiment for now that whilst there are surgeons here in the UK who can do the mini maze and on the NHS (I’m waiting to hear when those speaking to Mr Hunter about mini maze only on NHS get their date) as it’s an elective procedure it is subject to cancellation. Hybrids seem a step too far for the NHS at the moment. It’s no different I suppose to some of the other elective procedures in the NHS just now. I need a hip replacement and my local hospital has a 4 year wait and getting longer… I don’t think mini maze will become truly accessible until our beloved NHS is back on an even keel.
These comments are not directed at you MummyLuv as you have always offered balanced views about Mini-Maze variants and their effectiveness, particularly to folk with persistent AF.
Contrary to what some are suggesting, I’m neither criticising the procedure, those who have benefited from one or am I trying to discourage anyone from finding out as much as they can about the various mini-maze variants. However, as a regular contributor, I think we also have a responsibility for making members aware of reality as it affects us here in the UK. Whatever the reasons, it’s sad to hear when members experience the disappointment of having their mini-maze procedure cancelled several times and to hear the affect this is having on them. Those around the world, who have been able to benefit from a mini-maze procedure have every right to shout about their successful outcomes from the rooftops. There is (absolutely) no shortage of positive information about mini-maze variants available on this forum which has been beneficial to everyone but I’m not sure that there is an understanding of the situation as it applies here in the UK.
The fact that hardly anyone, other than the usual regular few who contribute to these threads, should be a clue. This is not a political statement but what we are currently experiencing in the UK has not been seen to the same scale as it is now in my lifetime. In brief, the NHS is on its, knees, many are finding it difficult to find the money to feed their families, pay their mortgages or keep their homes warm. As you say, elective treatment has incredibly long waiting lists and we are even seeing delays for cancer treatments where speed really is crucial to getting good outcomes.
All I ask is that like you, people keen to spread the word, recognise that there is no magic wand here and just bear in mind that for the time being (and sadly for the foreseeable future) mini-maze variants are virtually unattainable for the vast majority of UK members. We are all fighting to make things better but sadly I feel things here will not improve anytime soon. That’s the situation as I see it and really have nothing to add…….
I understand FlapJack....I really do. I certainly would not want to limit my thinking by the current state of the NHS. The NHS has been very good to me over the years but I agree there is no doubt its on its knees because of being starved of proper funding for a very long time. Nevertheless there are very expensive highly complex surgeries ongoing in the NHS involving multiple specialists.
All surgery is elective unless it's an emergency.
And personally I think part of the role of such a lovely forum is to be able to look at ALL options to resolve Afib......even the ones not on the NHS. That way you can have a balanced view of what is current.
It's well known that the gold standard set by the NHS always lags behind medical progress, and in addition, by necessity these days, is influenced by cost & the skills they have inhouse. Some NHS decisions are not good such as there decision to increasingly narrow drug options available for clinicians to prescribe.
So the thought of being governed in my thinking by what the NHS will do does not fill me with faith that it will necessarily be the best for me.
Do I have lots of money? Absolutely not! I still want to know though....
I don’t think anybody would disagree with your logic and thinking. This forum hopefully helps to satisfy the wide ranging needs of many with AF. This, quite rightly, includes providing knowledge and experience of all aspects of treatment but unfortunately, the sometimes the hype exceeds the realities of availability which can, and does cause some people to become angry and despondent when they realise that their expectations are unlikely to be realised. It doesn’t happen now, but in the past, we have heard some in the pro mini-maze lobby openly criticise catheter ablations claiming they do not work and are a waste of time and that patients should demand to have a mini-maze variant instead. Waiting times for a catheter ablation vary across the UK but most have to wait well in excess of a year and that is virtually the only form of invasive treatment available in the UK that has a reasonable good chance of controlling AF symptoms. You can imagine how many of the members that were on the waiting list at that time reacted to being told ablations were a waste of time and energy. I will never forget the effect this had on one member and the efforts some of us had to make to help renew their confidence in having an ablation.
Around once a month, we hear about the M-M treatment as though it is some wonderful new invention. In fact it’s been available for donkeys years although the latest methods of treatment bears little resemblance to the original and can certainly be effective for those with persistent AF.
I think the problem is that whenever it is discussed, it often comes across either as a hard sell and features cleverly crafted videos designed to promote the services of the clinics involved or a more subtle “look what it’s done for me”. To some extent, the Zoom meeting referred to in this post may be a variation on a similar theme because the the main speaker and the panelist actually have a controlling influence in their respective clinics in Texas and Tokyo so it will not be surprising if it becomes yet another cleverly crafted marketing opportunity for the clinics concerned. If this is the case, then it may cause some to ask what is the motivation which enables these media events to advertised on a public forum with 27,600 members with an interest in AF.
Be that as it may, for many it will be a good opportunity for many to have a better understanding of what the procedure is all about so that they can assess whether or not they should find a way of raising around $150k in America or a remarkable £18k in Tokyo as sadly, the Wolf Mini Maze is not, and probably never will be available in the UK on the NHS
whilst agree with the sentiment Flapjack, I think it is more correct to say rarely available on the NHS in the UK as Mr Hunter has done nearly 300 mini maze procedures out of Northern General. Mr Dalrymple Hay has done just short of that in Plymouth then a handful of surgeons doing 25 or so each.
I just wish there were more surgeons willing to put the time into training on this as unlike open heart maze not only is it harder to do via keyhole the procedure is done on the beating heart which is where the real skill is. It’s interesting some surgeons in the US are doing a minimally invasive maze but on a heart lung machine so the heart is not beating which I suppose is a half way house.
I'm truly sorry Flapjack I didn't know the history & didnt realise I was hitting such a strong nerve. I respect you and others on here as I'm definitely no expert on this. I appreciate all the wonderful posts on here, the skill and knowledge of others is amazing. And I don't wish to upset anyone & not u Flapjack.
However for the purpose of accuracy only, the Mini -Maze IS being performed in this country and it does not have an excessively long wait. I have been told this just this afternoon by my EP Cardiologist who has actually recommended I have a mini maze as opposed to an Ablation. I am only reporting what he has told me. He told me a 6month wait. (Not sure I believe this) but he was adamant, even when I explained that I knew someone who'd been through two preoperative assessment & still hadn't had her mini maze by the same consultant he's referring me to.....NHS. He's said there are different variants of the Mini maze but yours would not be a long wait. He works with Mr Hunter & knows him well.
He also told me that in his opinion the mini maze would be less risky for me, more effective for me than an Ablation because Im likely to have a lot of rogue electrical impulse from cardiotoxicity from cancer treatment. In the mini maze this can be seen.....he cant see it & so with Ablation he have to do the cryo one first, then another one using the pattern mapping but he may still not pick them all up so could lead to a third Ablation.....therefore Mini-maze is less risky will deal with it all in one go. It could also deal with the issue I have with anti coagulation causing bleeding....ongoing issue.
This surprised me. I was expecting him to recommend Ablation.
He also explained that Mr Hunter is training others currently so it sounds like the mini maze option will be far more widely available in time to come.
I hope he is right.....but hearing what you've said I will have a low expectation!
Thanks MumnyLuv. Are you well? He was lovely. He agreed that for me anticoagulants might not be the best....& indeed its likely I dont need the same level of anti coag as others because research is based on population studies not individuals. Research is going on to look at this currently. Am gratefulvto the experienced GP who suggested halving the dose! He also said there is increasing evidence to show that a pill in the pocket maybe a better option for P-Afib than blanket daily treatment like I'm having.....but more research ongoing to look at this.
I felt encouraged because Ablation is his bread & butter so who would know better which option to look at further.
hi waveylines. I noticed your comment above on pill in pocket vs daily treatment. I couldn’t take Flecainide daily because it caused me other arrhythmias. My EP told me to use in PIP and it worked great for me every time I had an episode. I would take one 50 mg and then half hour later another one and my episodes ended within 2 hours every time. I don’t use it anymore since my mini maze but I wanted you to know it worked swimmingly for me!
Thanks Poochman. That's really interesting. I'm getting some "breakthrough episodes" EP words so if they get a bit much I might ask about it whilst am waiting. Thank you so much!
We are absolutely fine wavylines and you MUST accept the information as provided by your medical team as there will always be variations around the country. It also sounds as though you have a great team working with you so let’s hope you are enroute for a good result and I look forward to hearing a success story some time soon. I’m sure you will have seen the recent posts from were procedures have been cancelled several times but there may be reasons for that. We all hope that the situation will improve for everyone’s sake, all the very best…….
Thanks Flapjack. Yes indeed lots of cancellations across the board.....lol. Horrible waits and it is hard when you get cancelled because you're all psyched up to go. Happened to me once & we were half way to the hospital....!!! It was major surgery and involved lots of post hospital care......such a let down. Went ahead a month later but messed up my post op plans!
Waveylines. FJ is not reporting the facts correctly. There was a single lady (not a group or a lobby), with the moniker Bambi, who had the WMM and quoted statistics (some would say stridently) that showed that a single catheter ablation had a 50-60% chance of success of AFib remission for persistent patients after 12 months.
This is not far off the mark. Professor Dr Schilling himself reported that in 2018 he achieved 63% success for paroxysmal and 58% for persistent. I believe that FJ has had more than a single procedure in the past, as had BobD, our volunteer.
And, FJ made accusations that Bambi's first post was less literate than her later amplification, and that it was likely written by someone else. She was very disheartened and does not comment further on the AFA site (or very very rarely).
This is not what this forum is intended for. No one should be defaming honest posters in order to silence them. The availability of NHS procedures is not a criterion for discussing first-hand experiences and successes or failures in curing AFib.
FJ accused me of having an Aston-Martin treatment without having any basis for such a claim, and tried to walk back his mistake.
I reported his post to the moderators and hope that this will not recur.
It is really important that we all feel we have a valid voice and are respectful of everyone and their views even if we dont agree. Those views need to be aired in a level non judgemental way so no one feels put down. This is vital so people feel they can speak without fear.....& then we can all learn from each other & feel supported too. This is the way I try to operate....though the written word can be misinterpreted- occassionally I have messed up unintentionally or I've misunderstood. I feel really sad you feel like this. Especially as you posted with such delight & happiness your fantastic result....and I personally just wanted to cheer & clap your sucess. It feels like.your bubble was burst and that is such a shame. You deserve the celebration, acknowledgement after you have been so brave to seek a solution no matter where it led you. I admire you. I hope you can hang on to the responses that celebrated your sucess. You deserve that big, big cheer Soulgar.....am cheering you all the way.
Thank you waveylines. You are a wonderful person. Regrettably this has happened before and I stayed away from the forum. I have friends in this group and would like to encourage them and to also mention how I am doing. It does make me sad that on the one hand this same person says that "we must promote catheter ablations" and then accuses people who have written about their success with their mini-maze of "conspiring to promote it" for commercial reasons.
I am saddened but undefeated. If the moderators don't ask this person to stop casting aspersions willy-nilly, I will simply stay away.
Please don't decide to stay away Saulger. You are valued by others on here. Please stay. I certainly have a lot to learn from you & I like your openess honesty and the fact you shared your journey in this post. Please don't stop. It gave me hope. (Selfish of me maybe but there it is) If you read my profile you will see I've been in a long battle for health.....but I'm a stubborn soul no matter how many things my body throws up.....I fight back. You too have fought hard to get where you are. So please stay.
Just a couple of points. Up until 15 hours ago, the only figure that had been quoted for a WOLF Mini-Maze was I thought $100k but Saul corrected me by telling me it was actually $150k in the USA which is why I made reference to an Aston Martin. About 15 hours ago, Saul told Paul Bounce that his treatment in Tokyo was actually only a remarkable £18k which is a lot less than I was quoted for a RF Ablation at St George’s back in 2019! The other thing is that I meant to type in my reply to was “someone” in the pro mini-maze group but as you can see, I only typed “some”. I had met Bambi in New York in 2019 with her husband and she is a lovely feisty lady but she would often shoot from the hip. The original title of her post which caused a stir was “Ablations don’t Work” which she was encouraged to edit to something less provocative. She later admitted to cutting and pasting something which looked as if it had been typed by her. Although not obvious at the time, I now believe it was a genuine mistake but by then the harm had been done and the member I referred to reacted badly because he was on the waiting list for a catheter ablation. The points you make about problems communicating on forums are very true. It’s far too easy to get thing’s wrong as I know from my own experience.
I appreciate what you are saying Flapjack but its Soulger you need to address not me, who feels deeply hurt by your comments & surely you can see why?At the end of the day it was a celebration of a sucess not costings, availability or a press push for one proceedure over another thats what you raised & thought . Wrong post! I'd like to join the online presentation on it. I need to gen up. Generous of Soulger to offer the link if you ask me.
The joy of hearing a sucessful outcome was music to my ears and others judging from the comments made. Why rain on the parade?
The Mini Maze is part of new medicine coming our way for Afib....fantastic say I- I welcome wider options. And it seems my luck is in because a wider option is exactly what I need according to my EP.
Anyway we all need each other as we all bring different things to the group.
And I think you will find Soulger wanted to celebrate with us & share....and I think that's brave and should be honoured. And I'm going to have to leave it at that.
Are you accusing me of being in the pay of Dr Wolf or Dr Ohtsuka? Please be clear.
Do I belong to a lobby that is out to antagonise catheter ablation patients? Please be clear.
You have just insinuated, UNJUSTLY, that the four posters on this page who have had the WMM variants and have had their AFib cured, had an ulterior motive in telling of their personal experience.
I find you comments personally defamatory and have reported the matter to the moderators of this forum. I shall be seeking a legal opinion.
Do not ever address any comments to me directly again.
sorry Saul, I was not referring to you or anybody who has contributed to this post. I am well aware of the lengths you went to getting the treatment you needed and I thought I had made that clear and I apologise if that’s the impression I gave. I have never heard you or anyone else who has contributed to this post make any derogatory comments about the effectiveness of catheter ablations. MummyLuv for example has always gone to great lengths to explain how catheter ablation is often more effective for paroxysmal AF. I was referring to problems that occurred way back last year which have no bearing on this post.
I know in the past moderators have removed a number of videos from posts which have appeared to advertise services provided by clinics and to be honest, I could see a similarity regarding the zoom discussion referred to in this post but I thought I also referred to the benefits it would offer to members. I can only apologise if I have offended you or anyone else.
With respect to you and happiness for your success vs afib, may I say I feel that you are overreacting to Hidden 's comments. I think that most saw the Aston Martin comparison and other comments not as a personal attack to you, but as to the expense of the minimaze procedure, and of course its unavailability to many.
If I recall correctly (correct me) recently you were asked about your absence from the forum after being tagged by MummyLuv to share your WMM experience. One of your replies was "the forum seems to have an anti minimaze attitude" or similar words.
Anti minimaze can be easily perceived by many, but in reality I feel most would agree it is just legitimate inquiries about the procedure. Each may draw their own opinion.
I commend you and MummyLuv for your approach to discussing the WMM/minimaze without disparaging other procedures, unlike previous discussions which affected many.
I would encourage you to limit your discussion of "anti minimaze attitude" in my comment above and continue to discuss your tremendous success with the WMM procedure which is very helpful to many.
Thank you Mav7. Accuracy and fairness is what it is about. Why assume that I had an Aston Martin procedure if you don't know the facts? One could just as easily ask me what were the costs. Not so?
And people in the US don't pay anything (or just the supplements). Because they are insured, they can call on any available treatment with little expense, just like with the NHS. So, why keep bringing the costs into a discussion about medical treatments?
If it's not available on the NHS, it should not be mentioned? Can I ask why?
And why accept the mini-maze as performed in the UK as legitimate and those who had the MM performed outside the UK as being part of clever marketing?
Finally, the poster in question let the cat out of the bag when he said that "we should be promoting catheter ablations". Can I ask why we should be promoting anything? I wrote of my first hand experience that was easy, low cost, and effective. but I was not promoting anything. I often write that "what works for you is the right choice".
I don't think that I was over-reacting. My standards are high and I believe that posters should be accurate and not cast innuendos to belittle honest discourse.
Yes thanks, Saul. I was going to ask in that post whatever could have brought you to want to leave our cold and wet Brexit island for the sunny climes of Greece - but I thought better of it!
Yes, Steve. I was just speaking with my Greek neighbour and he told me that there were no systems at work to prevent this tragedy. Greece is at the top of the list in Europe in rail accidents per million kms travelled.
What brought me to sunny Greece, to Ouzo, Retsina, Souvlaki, Sirtaki, Rebetico - let me think...
Reminds me of the story of the waiter bringing up the room service to George Best's hotel room and seeing his naked Miss World girlfriend on the bed covered in fivers, who asked: "Where did it all go wrong, George?".
Congratulations saulger and MummyLuv for your continued NSR and good health! My husband had the WMM 8/22 and has been in NSR since then also! He had persistent AFib so he’s slowly weening off the Amiodarone, but Dr Wolf is pleased with his recovery! We’re blessed that he is now able to exercise, rebuild his strength, and enjoy days with much more energy! He’s also lost over 80lbs since 5/22 following Dr Jason Fung’s fasting recommendations! We’re forever grateful I found this community and he’s gotten his life back! Please share the link to join the zoom as I’m sure our Dr and several friends would love to join the zoom! Wishing y’all all the best and continued healing from Texas!❤️🩹🤠
Sure thing ! Once the link is made available I will create a new post ahead of time for all who wish to be present and perhaps participate in the Zoom discussion (I am not sure what the format will be).
Best regards to you and your husband for your success. Saul
Thank you for the (unearned) compliment. I try to raise awareness that AFib can be taken care of, and for many after just one ;procedure. I hope that it will be long term for us and I will continue to update. Best wishes. Saul
thanks Saul I'll be tuning in, I'm in NSR since late last year but looking down the track, and appreciate anyone who shares experiences here like you have. I am born in Australia of Greek background so I know if one can de stress anywhere in the world, it is there! I will see if anyone is experienced here in Oz and look forward to hearing of your continued success
thank you for this Saulger. My reasons for having the MiniMaze aside from having the insurance to pay for it in Texas, was A) the success rates of ablation bs MiniMaze, b) it’s a one and done barring a simple flutter ablation if needed which are very few and c) I did not want the inside of my heart punctured and burnt up with multiple ablations and going under anesthesia multiple times plus I could be off blood thinners and I wouldn’t have tiny specs that ablations cause going to my brain. But that’s just me.
My reasons exactly, and the fact that I could read dozens and dozens of first-hand testimonials most good and some having difficulties also helped. Finally, the huge number (5,000) of previous patients swung it for me.
I do remember how hesitant you were for a while. But it finally gets to a certain point where you will do anything to fix it. I was so excited when you finally pulled the trigger! And I am so elated at your new life!
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